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Spoons! Support thread for CFS, ME & Lupus sufferers

(938 Posts)
Grockle Mon 24-Dec-12 23:30:26

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.

smile

Spoon Theory here

smilingthroughgrittedteeth Tue 25-Dec-12 01:40:53

Hoping you have a happy christmas and plenty of spoons to you all

GoodKingWenSOLOslas Tue 25-Dec-12 02:37:10

Merry Christmas and Happy Spoons to you all.xxx

smilingthroughgrittedteeth Tue 25-Dec-12 20:10:10

I am exhausted sad

I've had a lovely day, my mum came over and we've had a nice chilled day, we went to midnight mass last night so I slept in till 10 then got up and we opened presents, DP helped me cook lunch then we took the dogs for a walk.

Mum has just gone and I'm ready to sleep, how am I going to manage to do it all again when DSC are here!

Hope you all had a spoon filled day

CajaDeLaMemoria Tue 25-Dec-12 20:27:07

This is a nice idea smile

Spoons wise, DH did a lovely job at looking after me. Unfortunately, I'm ill again. Like last night. I feel very sick, dizzy and ill. Just utterly terrible. Had a nap at 5pm and DP spent all last night in our room so I wasn't on my own, but I feel terrible.

I hope everyone else is doing a bit better!

belleshell Tue 25-Dec-12 20:58:39

oh dear i have been very merry today......check out FB...loving new thread title. hope you have all had a spoon filled day xxxxxxx

Grockle Tue 25-Dec-12 21:01:29

We had a lovely day. Up at 6 with DS (I'm amazed he wasn't up earlier), then presents with DP before he left to see his DS's. Dad & Dsis came round for big breakfast then DS & I had a couple of hours alone to do presents (and we wrote ALL our thank you cards!) then we went to my sister's for dinner. Just got home, exhausted.

I'm getting up to be at Boots at 8am for the sale (to pick up nice pressies for people throughout the year) then home for a day in our onesies.

Caja, I get very dizzy & nauseous when I get too tired. It's horribe. I'm glad your Dh has looked after you.

Hope everyone else has had a lovely, restful day.

belleshell Fri 28-Dec-12 07:25:00

I all.....this is your 5 second warning if you dont want to read my moan...and im not sure if i feel like this cos of an expected slump thats over due..i have managed to stay awake and alert over xmas,..(yaya)

so here goes the moan... this as been our first ever proper dysfuncional family christmas and i have loved it. DP as helped peel veg, wash pots etc BUT.......... i think i have learnt something new in him. and that is my opinion doest count..its his way or no way..ie.. xmas day, i cooked all meat in roasting bads....so we had 2 bags left of cooking juices. i put one in the bin that would be emptied later that day, when it came to DP i asked him to do same, and he said it would be better down sink ( that no one ever cleans and it drives me mad) i explained the bin theory and whilst i was draggin bin over floor for him down the sink it went....petty i know......then last night i cut pizza up fort ur allsorts tea ( my kids favourite tea) its just all left overs for picnin tea.so pizza i cu tit up not to his liking and he he went back and cut it again...aaarrrrrrrgggggggggghhhhhhhhhh, apparently i didnt cit the turkey right... i said id take tree down, he said we have to leave it up...my kids cleared all xmas stuff upstairs, granted its a tip but his kids are still in sacks on livinig room floor, which wouldnt be an issue if we didnt live in a two up two down cottage with 5 kids (my neicie is here too cos brother in having op) 2 larger adults ( aftrer all this festive cheer) and a demented dog....who doesnt know what the hell is going on.....

on top of all that, i have paid for all the xmas fayre.which i really dont mond, but if we go shpooing or out for meals etc, he stands back and i end up paying...he is on a low wage, and mine is better but i also have a house to pay for... he does contribute but i havent had anything extra over xmas... this week it is pissing me off... i think im due on and ike i sa the inevitable slump is due....all in time for me to go back to work on firday..

Sotty for moan i do feel better.

Hope you have all had a fab christmas and have saved some spoons for your self..

xxxxxxx

smilingthroughgrittedteeth Fri 28-Dec-12 10:08:07

belle no need to apologise for moaning that's what were here for grin

My DP also does the stand back and let me pay thing, it really bugs me but in his case its because he doesn't have any money after paying bills and his ex. I've always earnt a lot more than him. And he hasn't quite got the hang of the fact that I'm currently earning the same as him, yet I'm still expected to carry the financial side of our relationship, its more that he is rubbish at budgeting and if he has money he has to spend it but I'm finding his attitude to money really stressful at the moment.

We had a lovely christmas until last night when DP's ex kicked off and refused access, we are supposed to be picking kids up tomorrow but she says she can't afford to meet us half way like she usually does, she ranted that she has no money yet she brought dss aged 9 a laptop for christmas and dsd aged 14 got £250 worth of vouchers hmm we have spent £80 on them both because we actually are skint so I now need to find the money for DP to drive all the way to them to pick up and drop off next week an extra £80, they also need new school uniform which ex is refusing to pay for even though we brought them new uniform in september and my car is also due its mot in jan and I know it needs a new exhaust and I've just had to renew road tax, I'm so worried and stressed about money I feel sick!

The more stressed I am the worse I feel. I've agreed to babysit new years eve because we need the money but am working during the day so I will be doing approx 19hrs, It will break me but I can't see any other way of getting the money I need to pay the bills.

I'm at breaking point today, financially, emotionally and physically. We've been so careful with money, even turning the heating off to save money but I don't even know how I'm going to feed us all next month!

Yesterday morning everything was fine I got some christmas money and decided to treat myself to a tablet and was really happy to have finally got one, now I feel guilty and wish I'd used it to pay bills, although when I orderd it all I had to pay had been budgeted for so it was spare money a novelty in this house how can 1 text from his ex make everything unravel so fast sad

CFSKate Fri 28-Dec-12 14:12:06
belleshell Fri 28-Dec-12 18:32:42

oh smiling..........Is ur DP and ex, mine???? you deserve a treat you have had a shit time lately.........please take care doing all them hours NYE... do you think you will be able to nap, once kids are asleep.........

fuzzpig Fri 28-Dec-12 18:44:07

Hello all, just marking my place on lovely new thread!

Xmas was good, nice and relaxed. DSCs staying over new year so that will be like another Xmas. I'm really looking forward to it but unfortunately I will be working for some of it.

I have done 1.5 days now, am exhausted already and very sore.

Grockle Fri 28-Dec-12 20:08:43

We have picnic teas like that, belle. In our house it's called 'bits.' I sympathise with your moan. I often feel a bit cross about certain things. Money is one - I pay for everything (now DP hasn't worked for 18 months so I am the only earner in the house so I suppose I should. But still... it would be nice if he contributed a little. Or got a job...) Money is a huge worry for me & puts a lot of pressure on me to cope & manage being ill.

The pressure of having to work, manage a home, children & a relationship is an awful lot & so difficult at times sad

I'm so sorry you have to work NYE, smiling. What a long day. In the past, I've had to rely on a foodbank to feed DS so I know how horrible it is to be unsure about how to provide for DC sad Don't feel guilty about the tablet.

I saw my psych today who upped my amitriptyline a bit - 75mg to hopefully help me sleep better. He's been really helpful & supportive & quite understanding about a lot of things in a way that other people have never been.

Thanks for links CFSKate

smilingthroughgrittedteeth Fri 28-Dec-12 20:24:06

belle I'm babysitting for a 6mth old and he sleeps really well so once he goes to bed at 9 I can doze on the sofa

Grockle Sat 29-Dec-12 05:55:23

That's good, smiling.

Following on from another thread, are any of you hypermobile? (I am)

smilingthroughgrittedteeth Sat 29-Dec-12 08:34:11

I'm not hypermobile im not hyper anything I have the opposite problem, everything is stiff and unflexible

Grockle Sat 29-Dec-12 13:12:28

I seem to be hypermobile but stiff! When I dislocated my shoulder a few years ago, the physio said that although movement in the joint had been greatly reduced, I can still move it far more that the average person anyway!

belleshell Sat 29-Dec-12 18:21:08

only hyper i am is condriac!!!! Grockle.75mg is high, what time do you take it.. im on 25mg ( i take between 6-7pm) and 3.75mg of zopiclone.........if i didnt have the zopiclone id be on 50mg, but i cant drive the next day... we are all different i know, but just monitor your hangover next day.....

my big problem at the min is night sweats......if DP wasnt asleep at 4 am this morning i would have had to change bed..instead i changed pj and put a towel in bed.only to wake up at 9 am drenched again....bedding is now drying... god its awful........ im also sat with windows wide open and kids are shivering......... been to town today for an hour with dd and she was saying id be could i had a t shirt and cardi on thats all...im was in a lather like that too.....

so what have u all had for xmas............

and what have you had from sales..........

i got vouchers and money and a new cup for work (some one pinched mine!!) a new charm for bracelt and best of all pjs and slippers........

i did want new boots but cant owt i like sohad trusty old ones healed today

in the sales i have had xmas cards for next year!!!

i have also had new foundation........yet anothert pot i am hoping will be a miracle and make me look human..........and some soap and glory body butter.i love it??

fuzzpig Sat 29-Dec-12 18:57:16

I feel quite spoiled by DH for Xmas - I got some cuddly toys blush - pink panther, top cat and a rare marvin the martian! Some soap and glory stuff also - DH used to work for Boots and knows I love it.

Favourite present though was a print of this smile

Nowt in sales, haven't had the energy to go out as work has been hellish. I did nip through the mall after work today though to get a couple more bits for DSDs as we are having their Xmas tomorrow! Woman in black DVD, Big Bang theory series 5 and the hunger games book trilogy.

Interesting turn of events BTW - think I mentioned earlier, there were some PT jobs going at our much smaller partner library across town. However I felt it was too early to make such a drastic decision (this was before my dx). I have since regretted not applying though, as my job at the big library is making me very ill. The small library has much less manual work.

Anyway - the lady who took the job has now said she doesn't want it. So I am wondering if they will interview again and if I'll have a chance to apply.

Grockle Sat 29-Dec-12 20:34:12

I got Soap and Glory stuff too. I love the smell. I'm glad you had a lovely christmas, Fuzz. I love Banksy - I have picture envy envy! I think you should apply for the job, if you can. If you don't get it then you've lost nothing. But if you don't apply, you're not even in with a chance, are you? Go for it!

I'm going to start the new year with a different attitude. I'm going to be brave & take chances.

I'm in a big mess. I've just had a big argument with DP. Again. His 16yr DSs texted him yesterday to say they'd come & see him (at his mum's house, 30 miles away from here). So, without any discussion with me, he went to see them today. I had no idea what time he'd be home. DS kept asking about him all day. Of course, children come first - I've always said that. But, after 3 years, I expect there to be some sort of conversation with me. Not him dropping everything at the last minute because he has a better offer. He could have said 'Grockle, the boys want to see me tomorrow. Why don't you & DS come?' or something. angry AIBU?

I've bollocked him for ages and am now sitting crying. He wasn't there when DS fell & spent 3 hours having gravel pulled out of his face (which then led to plastic surgery), he wasn't there when I collapsed spent the day in A&E, he wasn't at DS's show, he wasn't there for DS's christmas play... he's never there when it matters. I've got a lot of things to think about and big decisions to make in 2013 and I think my future with DP has to be one of them. He's not going to change, is he? sad

belleshell Sat 29-Dec-12 20:52:56

I dont think he is going to change......... and if he doesnt make you feel safe and wanted and loved ???? however if he does then ????? my breaking point for leaving my ex was i knew if didnt have to be let down, at least alone, i knew i would have to do it all and not expect anything..instead of having faith in someone who always let me down.........like when i was 27 weeks pregnant with 1st child and discharged from hospital becasue i couldnt breath he pissed off for weekend with his brother and mates, or ALL of the kids concerts in school..the only one i can remember he came to was the year we split...... or ALL of kids sports days......... or crawling out of bed to take kids to school and crying at gates because i didnt know how i was going to get back to car when i had my 1st ever ME/CFS crash and everyone thought i was going mad and it was all in my head........oh god im on a role..

2013 im going to get some weight off!!

Grockle Sat 29-Dec-12 20:59:11

Oh belle, it's just like that.When I know DP isn't here, I am much more relaxed. I have no expectation of anyone helping so I manage what I can by myself. I hate feeling constantly let down and used.

I need to get some weight off too. Healthy eating is another of my resolutions.

smilingthroughgrittedteeth Sat 29-Dec-12 21:04:14

fuzz apply for the job you have nothing to lose.

grockle unfortunatly I think after 3 years you can safely say your DP isn't going to change, he should have at the very least asked you if you minded, but I would have expected to be asked to go along.

My mum spoiled me and not only gave me £150 which I used to buy a tablet but also Micheal Buble tickets grin

I got lots of books, smellies and chocolate.

My bosses gave me M&S vouchers so I got some new boots and pyjamas in the sale, I have money left on it so will use it for next months shopping.

I'm currently hiding in my bedroom crying, partly because I'm tired and partly because I've reached my limit with DP's ex sad

She has always been ademant that I'm not allowed to be at drop offs, which has always been fine I have better things to do then sit in the car for hours, but after the fuss she has made this week about not being able to afford to meet us half way we decided the only way we could do the 3hour trip there was if I went too, I had a hospital appointment this morning didnt realise they did clinics on Saturdays and I needed DP to come with me as the dr wanted to speak to both of us, would have been fine if he only had to drive the normal half way but he didn't have time to drop me off, we got stuck in traffic so it took 4hrs, I stayed in the car and kept my head down reading until we had pulled away, got home at 8.15 and she had text DP saying "she's fuck ugly and if you ever bring the cunt down here again ill finish off where I left off last time" she has harressed me by phone but never been in the same place as her so no idea what she's talking about

DP and DSC are downstairs but after 8hrs in the car I've reached my limit for noise hence why I'm hiding upstairs.

Anyone got any advic? Part of me wants to go to the police as its a threat and I want her to know she won't get away with it, but is that just wasting their time?

I wasn't planning on going with them on sat to drop off but now I'm tempted just so she doesn't think she's got her own way, I don't want to cause a scene in front of dsc though, even though I wouldn't get involved in any arguments It would upset them sad why does she have to be such a pain in the arse???

SirBoobAlot Sat 29-Dec-12 21:18:40

Signing in! Hello all smile

I have CFS / ME, also suspected Fibro, along with Poly Cystic Ovarian Syndrome, possible Endo, and Borderline Personality Disorder. Do enjoy having a different condition for almost every day of the week hmm grin

After waiting for ages, am finally seeing a CFS specialist for the first time in over three years this Thursday. Hopefully will have Fibro confirmed, and be able to discuss some management issues. Also have an MRI for chronic head pain (separate, I believe, as it has only started in the last year, and have had ME for five years now) on Friday, then back to mental health therapy on Monday, so is a week of hospitals!

Sending you all love, spoons and a sneaky glass of wine.

Grockle Sun 30-Dec-12 00:02:44

no advice from me, I'm afraid smiling but lots of love & hugs. nothing prepares you to deal with exes, step chchildren & in-laws. life is tough .

<waves at boobs>

GoodKingWenSOLOslas Sun 30-Dec-12 02:41:12

Hey all! Smiling I think you should ask the police for advice re his ex. She should not be able to do that to you.

Grockle your Dp will not change, they never do <expert here!!> and all he is doing is draining your every resource, your very soul. You will do better without him. It's like with my Dd's father; he was hardly ever at any of the social events that I went to, he was always busy elsewhere, so I felt like a spare part every single time sad until he wasn't in my life anymore, then I didn't feel lonely or out of place at these things as he wasn't supposed to be there with me. I felt better without him. Is your Ds his Ds?

If any of you want to lose weight easily, let me know and I'll point you in the right direction.

Hi Boobs grin

GoodKingWenSOLOslas Sun 30-Dec-12 02:45:56

Oooh! didn't tell about my Christmas gifts did I?!

Mum bought me what I asked for this year. She got me a Bosch drill!
Ds actually bought me a gift. A 4 CD set of Rod Stewart 'Storyteller'.
My friend bought me a Blueray player and a film.
Brother and SIL perfume (doesn't do it for me though) it's FCUK Friction.
Nephew Box of Milk Tray.
Niece a CD of Jonathan and Charlotte.
smile

belleshell Sun 30-Dec-12 07:24:43

Whose boobs are you waving at Grockle wink heeheh. xx Hi SIR welcome along.....

Smiling...........the only advice i would give is..........tell her you got what she hasnt and she aint ever getting it back so get over it ...................... ( i was gunna tell her to go get f*Cked) ...seriously if the threats continue i would go to police.........even if its only to record it. and no its not wasting their time, no one should have to put up with threats and you have more than enough to contend with........and if she does cause a scene in front of the kids she will be causing the upset not you.

Oh to be a step parent. Life must have been so much easier when we got married for life, because life actulaay ended at 35 ............

Right now pain killers have kicked in gunna try get back to sleep..

catch you all soon

Spoons and love to you all

xxxxxxx

Grockle Sun 30-Dec-12 10:00:33

Lovely, solo smile

Smiling, I think I'd be keeping notes of all incidents- dates, times, what happened etc.

It wouldn't hurt to tell the police. You can use your local number or even email. I've had an ongoing issue with a neighbour making threats & deliberately driving her car into mine etc. i informed the police because it kept escalating & I wanted a record of what had happened & how much it was bothering us. The police were really supportive.

smilingthroughgrittedteeth Sun 30-Dec-12 10:22:36

Ok got some sleep and feeling much more able to cope today, have just watched DSC open their christmas presents and had pancakes for breakfast, getting ready to go to mil's now for christmas dinner take 2 grin

I will call the police and log it because after 2 years of trying to keep her happy I've had enough, I'm going into the new year as I mean to go on and that's by not giving in, I will be going with DP to drop kids home if I could get DP to agree I'd be ringing her to say we can't afford to take them all the way so if she wants them she will have to meet us halfway belle the old me would have told her to go fuck herself but I don't have the energy for confrontation anymore and I try to keep the peace for my DSC, they don't deserve to be used as a pawn and I despise their mother for doing it, she wouldn't think twice about attacking me in front of them the only thing I could do is refuse to engage so that they see it isn't me or DP that cause the problems and hopefully she realises the only ones hurt are them sad

I love my DP and DSC dearly but sometimes I think life would be so much easier if I hadn't got involved with him. That's an aawful confession to make blush

SirBoobAlot Sun 30-Dec-12 11:00:49

<Boobs waves back grin>

Grockle they never change. I spent two years waiting for ex to change, and realised recently that some things aren't right with DP either. Bloody men, tempted to go on strike.

I'm seeing a friend I haven't seen for ages today as she's studying in Canada for two years, I feel like crap. Why are the bad days always terribly timed?!

belleshell Sun 30-Dec-12 14:56:02

oh god im dreading tomorrow.........1st day back at work..
Funeral... then NYE celebrations......... i dont think i can do it all...(repeats over and over .i can do it i can do it..)

what are your plans for NYE

fengirl1 Sun 30-Dec-12 15:36:14

Reading the Spoon Theory made me cry. My dd1 is about to turn 18 and was diagnosed with Wegeners 19 months ago. If anyone has it, or knows someone who does, I would love to hear from you. May your cutlery never run out! smile

smilingthroughgrittedteeth Sun 30-Dec-12 15:38:48

I'm working tomorrow and babysitting tomorrow night so my new years eve plans are to curl up with a 6 mth old and sleep until his mummy gets home

Grockle Sun 30-Dec-12 21:08:48

Smiling, there's lots of things I think about that if I'd done differently or avoided, life would be much easier. I guess life is never going to be easy. We just need to figure out how to make the best of what is thrown at us.

I need to decide if the positive bits about me & DP outweigh the negatives. I don't think Im in the best frame of mind to make big decisions atm but it is certainly something I need to address, and soon. Maybe I should join SirBoobs in a strike. That would solve a lot of problems grin

My amitriptyline was upped at the beginning of the week - from 50mg to 75mg & it's really thrown me. it knocks me out & leaves me hungover & foggy all of the following day. I can't remember if that is one of the side effects that gets better over time or not.

Tomorrow is odd for me: It's my DMum's 60th birthday on the 1st so we often get together on NYE to celebrate her birthday. I hate it & it's really bothering me. Tomorrow I'm leaving DS & DP at home to go to London with my sister. We're meeting up with family (including the person who abused me for years when I was a child) & having a celebratory meal in a posh restaurant. I've ummed and aaahed about going & have decided that I really need to try. So, I'm going. But I'm dreading it & would rather stay home with DS.

Belle, you've got a busy day tomorrow...sorry it's not all good stuff. Hope you have time to rest in between.

Fengirl - I have no idea what Wegeners is but I'll google. Sorry the Spoon theory fits your DD. It's awful that things like this effects people so young.

SirBoobAlot Sun 30-Dec-12 21:13:12

Fengirl - I don't have Wegeners, but fell ill at 16 (now 21). If your DD wants another young person who is dealing with a chronic illness to talk to, then please PM me.

Belle, sending you a big hug. x

Had a nice day with my friend, knackered now though. Hopefully have enough energy to manage a shower tonight.

fuzzpig Sun 30-Dec-12 21:15:42

Grockle you really really don't need to go if you will be seeing this monster. You are ill enough as it is. Xx

fuzzpig Sun 30-Dec-12 21:18:39

I was meant to be having a shower tonight too sirboob. Working tomorrow (4th time since Xmas FFS) but in a lot of pain tonight. Plus, Ripper Street is on. So, sod that. blush

Grockle Sun 30-Dec-12 21:27:11

I've given up having showers... I can't stand long enough to have one & I get so cold. If I have a bath in the morning, it helps the stiffness & wakes me up gently. Plus, I get to lie down for an extra 10 minutes.

I know I don't have to go tomorrow but I feel like I do. I should be there. Plus, if I go, he know's I'm in control. I want him to feel uncomfortable... I hope all this Jimmy Savile stuff has made him realise that I could, at any time, report him or say something. He broke me & it's had a huge impact on my life. But I don't want him to stop me doing things like celebrating my mum's birthday. If it's too much, I'll leave but I want to try. On the other hand, seeing him acting perfectly normally, laughing & joking etc makes me seethe & I want to kill him angry I'm not coping well with anything atm and I'm sure this is not helping!

SirBoobAlot Sun 30-Dec-12 21:27:22

No, really need to do it... Lol. My hair is vile. Keep it long so I can chuck it up (thank goodness for dry shampoo) but really needs a wash...

SirBoobAlot Sun 30-Dec-12 21:29:00

Grockle have you contacted your local adult SS? Mine have supplied me with several bits of equiptment to make life easier, including a shower seat, as I can't stand for that long either.

And a big hug for tomorrow. x

Grockle Sun 30-Dec-12 21:46:45

Thanks SirBoobs. I haven't contacted SS... I'm terrified of them taking DS away. I know they don't just come in & take children and there's no reason for them to do that but still. I think because exH took DS when he was a baby & refused to let me see him for weeks. He got all sorts of authorities involved, using my past & bouts of depression as reason to question my ability to parent DS. He then realised that being a parent is hard when you work so handed DS back to me when he got a job offer somewhere sunny.

Anyway, if I can put all that behind me, what can SS do? Can I contact them myself or do I need to be referred to them? I'd love a perching stool so I could sit in the kitchen whilst cooking!

SirBoobAlot Sun 30-Dec-12 22:14:57

I have a stool in the kitchen, a frame on the toilet, a shower chair, and a trolley / tray on wheels to move things from room to room.

They really could not have been more helpful. I called them (I think it was a tip from another disabled mum on here actually) and told them that I was disabled, had just moved in to a new house, and would they be able to help me at all. They were wonderful. Arranged a meeting here because their office was too difficult for me to get to. The woman was lovely. She came in, and I was very nervous. She started off by reassuring me that she was simply here to make my life easier. (I was more anxious because child social services had been involved during pregnancy / early post birth because of my mental health history, though again they were lovely, had no concerns, and closed the case after meeting DS for the first time.)

She took a medical history, then asked me some questions about the things I found hardest. She had a look around, took some measurements, and then told me her recommendations for equipment. She also said if I wanted to and could get permission from my landlord, they could install a lift to help me get DS out of bed, and a handle at the side of my bed for me to get out too. I said no to these, but the offer was appreciated.

The equipment was delivered within five days, the guy came in and put them all in place for me.

She also told me that if I felt at any time I needed anything else, be it other things for the house, or help with support with DS, to just give them a call. No questions about my mental health other than, "Would you like homestart or similar involved to give you any time off?". Again, I said no to that, because my mum is just down the road, and would rather their time was available for those who don't have any local support.

I didn't once feel upset, or embarrassed, or that I was at risk of loosing DS. She couldn't have been more lovely, and matter of fact about things. She called a week after to check everything had arrived okay, and to tell me again that if at any point I needed anything else to just give them a call.

Wow, long rambling post, sorry, but really, I couldn't praise them enough.

fengirl1 Sun 30-Dec-12 22:48:10

Thank you Sirboobalot and Grockle.
Sirboobalot - I'll ask her and let you know! It's so rare but an auto-immune condition. She's very stubborn!!!!!

Grockle Mon 31-Dec-12 04:48:04

Thanks sir boon, that's really helpful. I might try them in the new year.

smilingthroughgrittedteeth Tue 01-Jan-13 10:34:44

Happy New year everyone, here's hoping it brings an abundance of spoons for us all.

Got home from babysitting at 3.30am, am beyond exhausted

SirBoobAlot Tue 01-Jan-13 12:33:16

Happy new year all!

DP got here at 2am (family birthday meal two hours drive away) and we... ahem... saw in the new year wink However, I am now going to pay for it for a week <grumble> TMI here: I miss having sex without being a) knackered and b) in pain afterwards. A combination of ME, PCOS and suspected Endo make DTD less frequent than I would like blush <sulk>

Still, he got up with DS this morning so I got a lay in grin

Grockle Tue 01-Jan-13 15:25:54

Oh, sirBoob, I have the same problem. In fact, the last couple of times we had sex, I fell asleep before we'd properly finished blush Thankfully DP hasn't taken it personally! Even when I feel well, I know I will pay for it the following day and I also fear that I will be left in pain or get cramp in my hip. Does anyone else get that? It hurts! I've found that morning sex is best and if we so a spooning thing, lying on our sides, it is easier on my body. See..more spoons?! Sorry for far too much info grin

I survived last night. It was quite nice, if a little uncomfortable. I fell asleep less than a minute after midnight. My sister said it was as if someone had flicked a switch and turned me off. Knackered today so watching Mary Poppins with DS.

Grockle Tue 01-Jan-13 15:26:31

HAPPY NEW YEAR everyone.

Wishing you all unlimited spoons, happiness and smiles

smilingthroughgrittedteeth Tue 01-Jan-13 16:21:40

I get cramp in my hips too, more my right one than my left, DP always knows when it happens because I suddenly lay very still and start laughing, happens every time we have sex sad

We still have a very active sex life blush any position which involves backwards entry <sorry tmi> hurts so we are limited to either military or me on top, problem with me on top means I get tired quickly.

SirBoobAlot Tue 01-Jan-13 16:32:05

Its the internal pain after orgasm that is the worst for me (sorry!). I tend to wait until DP has fallen asleep, then sneak out of bed to find some pain killers. I have been known to cry with the pain afterwards at times sad Really bloody irritating.

Have had a very lazy day today as the rest of my week is busy.

smilingthroughgrittedteeth Tue 01-Jan-13 17:13:04

Its penetration at a certain angle that hurts for me, its like im being ripped apart
And deep penetration can leave me sore for days, ive been known to have a bath to ease the pain at 2am.

Weve had a relaxed day, played a board game and now were watching a dvd. Am off tomorrow but have got to take dss to get some wellingtons and new schooo trousers, the police are coming out to see dp and I tomorrow night, am working thursday and friday mil has arranged for us to gobto sil's so that she can get all the grandchildren together, im not happy about it sil lives about an hour away and it means we are going to have to take 2 cars as we wont all fit into 1, so I will have to drive, I dont drive further than to work anymore because the concentration involved is exhausting, plus we will be in the car for 8hrs on saturday taking dsc home.

Grockle Tue 01-Jan-13 19:37:41

What a frank discussion we are having! It's nice to be able to talk about this kind of stuff though so thank you.

Oh smiling sad The hip cramp thing is horrible, isn't it? I only get it if I am on top which is a shame because I prefer that although I get knackered too quickly these days blush

Deep penetration is painful for me too... I often wonder if I have PCOS or similar.

SirBoob... I once had horrendous internal pain afterwards. I was in agony and slithered accross the floor to the bathroom where I was sick. had awaful cramps and was contemplating calling an ambulance. The pain was horrific. I think it was caused by my period being 8 weeks late (my cycle is ridiculously irregular) and my uterus being, um, full. Sometimes having sex seems to cause my period to start if I am a bit late.

smilingthroughgrittedteeth Tue 01-Jan-13 21:09:06

I quite like being able to have a discussion about all the embarrassing things wrong with my body, I feel less weird knowing its not just me!

I get the hip cramp whether im on top or bottom but its worse on top and can be so painful it leaves me breathless.

SirBoobAlot Tue 01-Jan-13 22:26:29

If your periods are very irregular and you struggle with pain after sex, it could be worth asking to see a gynecologist. Am waiting for operation number two currently, which terrifies me because the CFS-induced sensitivity to GA was in full force last time. Took them hours to bring me round. Poor DP wasn't told anything other than "There have been complications, go home and we'll call you when we know what is happening" angry.

smilingthroughgrittedteeth Wed 02-Jan-13 09:30:38

I'd second asking to see a gynea, it took me 4yrs of pushing my last dr who just kept saying my horrific periods were normal and I should learn to live with it like other women hmm new dr got sidetracked by under active thyrod but once that corrected itself without meds because I'm allergic too synthetic thyroxine she agreed that I needed a gynea appointment.

He has been wonderful, and is fairly certain its endometriosis that is causing everything that is wrong with me, but then I've had other drs say they are fairly certaain its x,y or z and the tests always come back negative so I won't pin all my hopes on this diagnosis till after the tests.

The thing with endometriosis is that it has a wide range of symptoms and you might not have them all, I always thought it was irregular/painful periods, weight gain and painful sex, but the gynea says its a lot more and includes, cfs, thyroid problems, ibs, painful limbs, memory fog and more that I cant remember.

I have the memory fog, weight gain, cfs, a thyroid that either works or doesn't when it feels like it, cfs, ibs, painful/achy joints and heavy, painful periods BUT they are regular and sex is only occasionally painful.

All that is my rambling way of saying I think you should ask to see a gynea blush

belleshell Wed 02-Jan-13 14:38:23

im feeling a bit left out, either i arent doing the sex think right grin or i thankfully havent got gyne problems, which is a rare thing... i agree u should go see GP and ask for gyne review ( i know grockle your gp as been shit a ttimes)

today i have had a text from my mums friend (who died) son, asking if i knew if his dad was his real dad and can i help him find out..how the chuff do you reply to that!!!

GoodKingWenSOLOslas Wed 02-Jan-13 15:55:14

Look! It's me that's being left out! I haven't had sex in years!!! sad blush

weegiemum Wed 02-Jan-13 15:58:22

I'll join you. I've a neuro condition that's very rare and I get extremely fatigued between my treatments (once a month IV infusions).

I reckon I run out of spoons every day - I have lovely dh and 3 dc!

belleshell Wed 02-Jan-13 16:49:36

oooooooooo solo its not all its cracked up to be [ginn] welcome weegie......

we have a good old chaT on here, whats your condition called....xx

Grockle Wed 02-Jan-13 18:14:16

Solo, I went for a very long time without. And atm, I am not that keen as it's such a huge effort. I think DP & I are not going to last much longer so I will probably be joining you!

I didn't realise gynae problems could cause such a range of problems. Not once have I been asked about my periods or anything. I have added it to my list of symptoms to show the consultant but I'm not going to see my GP about it. I can cope, for now.

Welcome to weegie.

smilingthroughgrittedteeth Wed 02-Jan-13 19:16:55

Hi weegie welcome grin

I'm not sure if I've ever posted about why I went to the gp, if I have I'm sorry to repeat it.

I originally went to my gp 5yrs ago with low level tiredness and heavy/painful periods and was told to get on with it and put on the pill which made me bleed less but the pain was still really bad.

I gave up going to that gp but when I moved house 2 years ago I deliberatly chose a female gp practice, went to see them about my periods and the tiredness that never shifted still only low level at that point and they immediatly sent me for blood tests and a pelvic scan, the scan came back normal but the blood tests showed I had an underactive thyroid so that was what it was put down to, I took the thyroxine for about a week then got rushed to hospital it turned out I am allergic to synthetic thyroxine so was taken off it and put on the waiting list to see an endocrinologist, then the tiredness got worse, I couldn't get out of bed, felt sick and dizzy all the time, went to the gp and while there passed out, more tests showed that my thyroid was functioning fine, I then saw a cardioligist and had test after test after test until about a month ago when I went back to the gp and asked if I could see a gynea, we had got side tracked by the thyroid and other symptoms and had forgotten the reason I had gone to see her in the first place she agreed and refered me, I was lucky to get an appointment at my local private hospital and saw him 3 weeks ago.

Even my gp said its so easy to get side tracked by all the little symptoms that develop over time and sometimes you have to go right back to the very first thing that you noticed being wrong.

grockle if you are having pain during sex and painful periods then you really need to insist on seeing a gynea, I wish I hadn't let my first gp palm me off for so many years, perhaps if I'd persisted and refused to go away I wouldn't be at the stage I am now.

SirBoobAlot Wed 02-Jan-13 20:32:59

There are links between ME and PCOS / endo, unfortunately. I have been diagnosed with PCOS (lapraoscopy and blood tests) but still have all the symptoms for endo, as PCOS shouldn't cause pain.

They didn't find any endo during my last op, but to be honest (look away now if you are squeemish!) I had a grapefruit size dermatoid cyst that ruptured during surgery, so loads of gunk and hair shock went EVERYWHERE, along with my ovary being twisted around to the other side of my uterus, and the falopian tube twisted damn tight, so I am not entirely convinced they had the opportunity to look properly. There were then issues with my blood pressure and bring me around from the GA, so all in all it went well hmm

Now just waiting for them to cut me open again. Have already been warned about the possibility of loosing the ovary / tube that were twisted tightly, and the ironic thing is that is my 'better' ovary. It only has 12 cysts on it hmm and wasn't the one with the giant cyst (named Peppa Pig by DP because it was hairy!!!!). That was has around 20 cysts.

Hope none of you threw up blush grin

Managed to get through work today, though so drained now. Thinking I will have a reasonably early night, though I struggle to sleep before midnight. Appointment with the ME specialist tomorrow, am anxious. Haven't seen a specialist since I was pregnant.

Grockle Wed 02-Jan-13 20:39:22

Hope all goes well tomorrow SirBoob. Will be thinking of you. I am speechless about your surgery! I hope whatever is wrong is fixed easily & painlessly.

smiling, that is certainly food for thought.

smilingthroughgrittedteeth Wed 02-Jan-13 21:51:30

Good luck tomorrow sirboob

Police have just left after asking lots of questions but the text message from ex has been logged, dsc are in bed and dp left for work so I am making the most of having the sofa to myself before i can't put off the trip up the stairs anymore hmm

I still haven't recovered from babysitting on nye, I fell asleep this afternoon, sitting upright at the table blush, I can feel myself heading for a big crash but hoping I can hold it off till dsc go back to their mums on sat.

Working tomorrow then off again till monday grin

Grockle Sat 05-Jan-13 01:22:19

how are you, smiling?

and how was Mri, sirboobs?

just wondering if any of you have bleeding gums? mine bleed when I brush them & when I wake in the morning, I have dried blood on my lips shock

Solo Sat 05-Jan-13 01:54:31

No bleeding gums here. You should visit the dentist; make sure everything is good.

Grockle Sat 05-Jan-13 02:24:30

hmm, I'm going in a couple of weeks so will mention it . I'm bruising easily atm so wondered if it might be related? (also, the bleeding after sex thing) I'll add it all to my list of ailments .

smilingthroughgrittedteeth Sat 05-Jan-13 10:06:47

My gums bleed, dentist says my teeth are perfect <preens> so he doesn't know why they bleed, sometimes they are so tender I have to use a soft childrens brush to clean my teeth othertimes they are fine hmm

Just getting ready to take dsc back to their mums, fingers crossed she doesn't kick off we've had a lovely week and would hate for her to spoil it by making a scene sad DP worked last night and has had 2hrs sleep because she wants them back at 2 so I will be driving while he sleeps, or I would happily be curled up on the sofa with the dog.

Went to sil's yesterday which was nice but am sore and tired after spending 2hrs in the car and could do without another 8hrs in the car today.

I have an appointment for my laproscopy and hysteroctomy in march

fuzzpig Sat 05-Jan-13 10:07:57

Just briefly signing in again... have been off work since NYE. All of us got a bug (thankfully not as bad as norovirus but still enough to wipe me out). Am very lucky to have had lie ins every day though.

smilingthroughgrittedteeth Sat 05-Jan-13 10:09:35

Oh fuzz hope you feel better soon x

SirBoobAlot Sat 05-Jan-13 12:13:15

When I saw my dentist a while back, she was lovely, and said its quite normal for ME sufferers to get bleeding gums, and for their teeth to be in a worse state because we tend to snack instead of eating big meals, and sometimes just don't have the energy to brush our teeth. My gums bleed on occasion, I just make sure I brush them extra well for the week after blush

There are two cream eggs in my house somewhere, they are hiding from me...

MRI was terrifying, frankly. I kept as calm and as still (thank you, valium) as I could so that it was over with ASAP. Kept my eyes closed for a lot of it, didn't like it when the machine was shaking. At one point in the mirror on the head cage, I could see the doctors in the office frowning and pointing to the screen, where just before they had been laughing around. So I'm frightened now. Was also told to make sure I call for results by Wednesday, and was told previously it would be weeks. God I am so scared. Really hoping they were just playing farmville or something, and because its the new year there isn't much wait.

However. We managed to have a lovely day in an odd way! Went to the British Museum first (I'm an Egypt geek, and am slowly brainwashing DP wink), then to lunch, then to the hospital, which was highly disruptive to out plans grin By the time I got out of there, it was nearly 6pm, and because we got off peak returns, and there was no way we would get back to Victoria in fifteen minutes, we then had an hour and a half to spare. So we were sat on the bus, wondering what to do, then DP looked at me and said, "I'm taking you for tea at The Ritz." I laughed at him, but he was serious. So that's what we did. We stuck out like odd thumbs, and paid £13 for a pot of tea, but we didn't care. It was great fun, hilarious (we were making lots of jokes about them wanting to hide us in a corner etc!!) and very nice tea. We giggled all the way home.

So actually it was worth doing.

Just got my fingers crossed for results now.

smilingthroughgrittedteeth Sat 05-Jan-13 14:51:16

sirboob your DP sounds lovely grin

I've always had MRI results within a week so I would try not to worry to much, if there was a problem I'm sure the dr would call you before wednesday.

Have just dropped dsc off at their mums and been called a cunt again sad I have never been called a c**t in my life and now its happend twice in a week

belleshell Sat 05-Jan-13 16:56:48

smiling she obviously has a limited vocabulary...... and Boobs what a lovely unplanned day they are often the best....
We have a planned evening tonight we are going out for DP friends 60th......... does anyone else panic at the thought of nights out........i was never ever like this, but recently i dread them till i end up making myself worse or cancelling and today im trying not to do either......its not because i dont know anyone or im driving, i jsut dread the thought of waking up tomorrow and feeling crap.... my head is banging tonight for no reason ( other than i dont want to go.........i actually otherwise feel ok.)

its not that i dont ever go out we called at the pubs in the village last night but was home y 730 which is great, but the thought of going out at 730 terrifies me........

Fuzz ive been wondering where you are, hope you are all feeling better.

i joined weightwatchers this morning.....im 40 in June and dont want to be fat and 40...my problem is i dont fancy hot food, so snack on biscuits etc....... i really need to get out of this habit and eat better... im a contrdiciton in terms, my job is to advise people on diet exercise etc.........but i really dont take my own advise.. i have managed to walk dog ( well 10 mins round block) 3 times this week.........not sure it will protect my heart, but its a big improvement for me ME wise.

Grockle Sat 05-Jan-13 19:00:42

My teeth are perfect too so I don't know why my gums bleed. I shall investigate further.Interesting what your dentist said, Sirboob.

Sorry she's so vile, smiling sad I hate that word & would never use it for anyone. What a horrible woman. Add it to your list of things to keep for the police.

Sorry you've been unwell, fuzz. Feel better very soon.

Oh SirBoob, that sounds scary. They never got back to me about my MRI, so it must have been fine. In fact, my last one was definitely fine as the consultant sent me a letter to say what they've done, what tests they've done, what they've ruled out etc. He says I DON'T have Lupus. So, that's good, I think? confused I'm glad you had a good day otherwise.

Belle, I have the same problem. I can't eat hot food so snack on cereal, toast, biscuits etc. Which means I have got very fat. I have decided to begin this year with a different attitude - if I tell myself I am not unwell, maybe m,y body will believe me. So, I'm going for another walk in the forest tomorrow & I'm going to plod along as I used to & hope that it doesn't all backfire & make me really ill.

magso Sat 05-Jan-13 20:52:07

Hello all. Happy new year to you all. I lost the old thread and have only just noticed this one.
I guess it is good Grockle that Lupus is back off the maybe list. I will confess to disapointment when this happened to me as I just want to get well and anything treatable has to be a start.
I have got rather podgy too- having always been petite in the past. It used to be difficult to find cloths small enough but today I went shopping and all the nice clothes were too tiny by miles. I think I feel faintish and snack because in the past it was a sign of needing food - now is just the ME. Also I think some of the medicines make me hungry! Any suggestions where to start with loosing weight but keeping as well as possible?
Tea at the Ritz sounds lovely*SirBoob*. Hope you are feeling better Fuzzpig.

SirBoobAlot Sat 05-Jan-13 21:08:04

Forgot to say I saw the ME team on Thursday. They were nice, but basically said they couldn't help me. Did tell me to alter my diet and try to eat three meals a day. When asked about it, realised that some days I barely eat anything.

Have managed to eat two small meals today and feel bloated as hell!

smilingthroughgrittedteeth Sat 05-Jan-13 21:09:11

I've also put on weight, I'm only 5ft 2 so any weight gain makes me look massive, I've always been a size 12 bottom and 14 top big boobs and been happy at that, I'm now a 14/16 bottom and 16/18 top sad

I hardly ever eat breakfast, often skip lunch and just don't have the energy to eat dinner so I graze on food all day long, just eating whatever is handy that doesn't take any effort to make or eat.

SirBoobAlot Sat 05-Jan-13 21:31:48

I lost a huge amount of weight when first ill, then struggled loosing baby weight, because I couldn't exercise it off sad

Grockle Sat 05-Jan-13 23:56:13

That's the difficult bit... I do as much as I can but it's really hard to do more physical activity because it hurts & I'm shattered. I really need to concentrate on it now & be firm with myself. I don't like feeling all wobbly.

I don't want to go back to work on Monday! I'm just beginning to feel well again, after 2 weeks off. I know that after 2 weeks at work, I'll be literally dragging my feet & feeling really awful. I don't know what to do about it. If I could stay at home, I think it'd be manageable - I'd still have bad days but fewer of them, I'm sure and I wouldn't have the guilt I feel now if I go to work & can't do much or have a day off sick. But I can't stay home so I have to get on with it sad

fuzzpig Sun 06-Jan-13 00:23:05

Apologies in advance for selfish rant. I am in a bad way at the moment. Can't sleep which is happening more lately and very annoying because getting decent consistent sleep was the one thing I was doing pretty well. For the first time in ages I am in a lot of pain. Was hoping to go back Monday but what's the point really? It is really getting me down now and I just want to shut the world out.

Grockle Sun 06-Jan-13 00:39:50

Oh fuzz, it's horrible, isn't it? My sleep has gone all silly again. I wonder if it's a January thing. No advice really, because I feel pretty much the same as you but don't go back til you are ready. Gentle hugs for you & lots of spoons.

WhereTheWildOnesSnow Sun 06-Jan-13 10:40:02

Hi all and Happy New Year. I'm finding everything really hard work ATM and just want to sleep all the time. I have ME and am waiting for referral for fibromyalgia.
I'm also having lots of problems with my periods, had a miscarriage in may and since then they have been really irregular. I had an internal scan after miscarriage where they said there was a lump/cyst but it was nothing. My periods(when I have them) are extremely heavy so I'm worried I may have some other problems there :-/
I'm hoping that once the children go back to school and my routine (which is key for me) goes back to normal I will start to feel better but I'm dreading the early mornings, it's getting to the point where I can't even get up with the children which is worrying.
Can't believe how much I have just waffled on, think I need to get stuff off my chest.

justcrazy Sun 06-Jan-13 10:53:32

Hi everyone, I am new to mn and have just read through this thread and feel like I am home! I have ME and depression, I work full time with SN children and have two teenagers.

My sleep at present is awful mainly I think from stressing about returning to work tomorrow and how am I going to manage. DH has been off over the hols as well and I have been getting up late and having afternoon naps.

Hugs and love to you all.

smilingthroughgrittedteeth Sun 06-Jan-13 11:12:38

Hi WTWOS and justcrazy

Someone please tell me to get up, I've done so well all week at ignoring the aches and not giving in to the tiredness but can't seem to fight it today.

justcrazy Sun 06-Jan-13 12:13:43

Hi smiling, you've done fab all week and if you can listen to your body today and rest as much as you can. X

belleshell Sun 06-Jan-13 15:59:53

well i survived the night out.... even thou i didnt know anyone and really wanted to be at home tucked up on settee or in bed we stayed out till 10 ish.....not great but its a start at trying to overcome my sat night phobia.......(well its any night that involves going out of house after 6pm)

im also doing well with the weight watchers thing...... planning meals takes the chore out of deciding whats for tea...

i wonder if i will feel any better a stone lighter........probably not but wil fel better about myself..

spoons to you all and welcome new MN...sorry you it into our bunch but glad your here to join the support these fab peeps offer!

smilingthroughgrittedteeth Sun 06-Jan-13 17:43:09

Glad you survived belle I hate going out in the evening and get really panicky about it, the only time we go out is on Tuesdays to a pub quiz, but we live opposite the village pub so if I get tired I can be home in 30 seconds plus we know everyone there so If I'm not overly sociable nobody thinks I'm being rude they know I'm having a bad day.

I slept till 1pm, got up and popped to tesco then slept from 2.30 till now, am going to cook DP a nice dinner to make up for being a useless girlfriend (he says I'm not but I feel it on days like today)

fuzzpig Sun 06-Jan-13 18:08:45

I just realised I haven't been outside the house this year. In fact since I came home from work on 29th Dec.

belleshell Sun 06-Jan-13 18:33:14

oh Fuzz, go down garden or somet........ hope you feel better soon..

Grockle Sun 06-Jan-13 19:48:53

Hi WhereTheWildOnesSnow, sorry you are struggling. Welcome justcrazy...I'm also having a big panic about work tomorrow. It's INSET for me so I am eased in gently but still...work is very, very hard for me (also work with SN children).

Belle, that's the same idea as me - I may or may not fell better a stone lighter but I will certainly feel better about myself which is important.

Fuzz, not being outside for that length of time would make me very depressed. I NEED to get outside. I hope things feel better soon.

fuzzpig Sun 06-Jan-13 20:58:27

I tend to get more insular the more I'm inside. I don't even want to go out (and have no garden anyway). Not decided about work tomorrow yet.

belleshell Mon 07-Jan-13 17:14:49

Hi All just wondered how work was for you all.....im back tomorrow.xxxxx

fuzzpig Mon 07-Jan-13 17:16:32

Didn't go. Which means I need a sick note, and can't get an appt til thurs. I am worried they will refuse to write one.

magso Mon 07-Jan-13 17:32:40

Can you get a telephone consultation or just write a note explaining to the GP that you do not feel well enough to work. I needed a sick note after my surgery (the hospital could only give 14 days and recovery needed longer) but when I eventually got an appointment the GP said I could have written or asked for a telephone consultation so yours may be the same Fuzzpig. Hope you feel stronger soon.

Megsdaughter Mon 07-Jan-13 18:14:29

Did anyone hear the bit on Jeremy Vine on Radio 2 today? It was the first time I have heard Lupus discussed on main stream radio.

It was about 1.25 if you listen to it on Iplayer.

smilingthroughgrittedteeth Mon 07-Jan-13 18:14:55

I ended up coming home early I nearly threw up on a tesco drivers shoes, its just
tiredness but I couldnt carry on anymore

SirBoobAlot Mon 07-Jan-13 19:31:01

Struggling with my mental health condition this week. Hoping to read through what everyone has written tonight if I can.

Much love to you all, sending spoons.

NurseJackie Mon 07-Jan-13 22:30:57

Hi hope I can join you? I've had ME for ten years and was functioning quite well working part time as a nurse. I have a 3 year old DS. Since oct I've been going through a relapse although seem to have picked up a bit in the last few weeks and plan to get back to work soon. Have been reading through the thread and can really identify with a lot of what you have all said. I've found this relapse tough looking after my son and trying to pace along with the feelings of guilt and frustration but recently have been trying to let go of all of that and praise myself for what I can do. Look forward to chatting.

Reenypip Tue 08-Jan-13 08:45:06

Hiya everyone! I've posted in other topics on here but never in here.
I've got multiple health problems, one of which is possible ME.
After a spine and foot operation, I caught MRSA which got into my blood causing septicaemia and then I caught C Diff too.
Since then I've never been the same.
They haven't done any tests to rule out anything else. And my GP said it was ME because of the symptoms since I was seriously ill. It's been 3 and a half years since it started.

I have a 20 month old boy and pregnant with my second at 21 weeks.

I joined AYME but now I'm 26, I've had to leave. I haven't joined the graduates.

confuddledDOTcom Tue 08-Jan-13 08:53:29

I thought I'd mark this thread. I'm mobile so will post more when I'm on properly. I have antiphospholipid syndrome (Hughes for short) and a small selection of complications to go with. also got a daughter recovering from CFS.

smilingthroughgrittedteeth Tue 08-Jan-13 11:31:22

Hi to all the newbies grin

I'm out of spoons, optimism and the ability to drag myself through sad this morning I stood at the top of the stairs and seriously considered throwing myself down them, I am not suicidal but I desperatly want to have a valied reason to to not have to go to work or even get out of bed.

I'm due to do jury service on the 21st and I am so panicked by it that I can't sleep, which makes me feel worse, they've already had a letter from my gp in november which is when they deferred me to January, I can't get through the day without sleeping or fainting, I have ibs and dizzy spells, I can't remember what I walked into a room for, how can I be trusted to sit on a jury? Appparently I'm not ill enough to be excused.

I'm a horrible girlfriend, a bad nanny/employee and I'm failing everyone and everything I do sad

I just want to curl up in bed and hide from the world

magso Tue 08-Jan-13 13:12:39

Smiling, sorry you are out of spoons, wish I could give you a couple of mine (Ds went back to school today so not as tiring as holidays). I know what you mean about wanting an 'valid' reason to be in bed that others will understand (such as a non debilitating but highly infectious illness, or a foot injury that requires bed rest to recover). Often I feel as ill as did when in respiratory and cardiac failure (due to pnuemonia) - but now the debility is not recognised. You are not horrible - you are ill girl - and feel horrible! Big difference!

I've not done Jury service (was called up once but excused as ds had just arrived and needed me) but know that I would not have coped with a full day of anything until recently. Assuming you cannot be excused (can the GP write to help excuse you I seem to remember my excusal was quite late before it was definate?) Are you able to rest sitting up? Would taking notes help you concentrate? Are there anythings that could help you stay comfortable ( such as a back cushion?). Find out about breaks - is there anywhere you could rest properly? Anything that could help you manage and most importantly feel you are managing. (hugs) and spoons

Hello to those new to the thread.

smilingthroughgrittedteeth Tue 08-Jan-13 14:20:59

magso thank you

I have just woken up having fallen asleep on works sofa blush thank goodness I have understanding bosses. Have got half an hour to wake up before school run.

I rang the court and spoke to a lovely lady and explained that I am unwell I told her about the fainting and dizzyness, I couldn't help crying she must have thought I was crazy, I am waiting for someone to call me back

fuzzpig Tue 08-Jan-13 14:28:36

I hope you get excused from JS smiling. I've always really wanted to do it but there's no way I could cope with it right now - I hope I don't get called up until I'm much better.

Nice to see so many new faces thanks

belleshell Tue 08-Jan-13 15:10:52

hello all you newbies.......sorry your here but happy to have you along..Smiling you are not horrible, but ill... and i too at times wish i could have a valid illness, thing is you have we just dont have a flashing light showing that, and we tend to just try to get on with it..... i really struggle withthis time of year as all the disruption to normal routine really upsets me, add that to all the running around we do at christmas, im usually heading for a crash...i do however feel quite well( well well for me) this week, so fingers crossed i have done something different this year.

hope everyone else is getting on ok back at work.

smilingthroughgrittedteeth Tue 08-Jan-13 15:49:23

What's getting to me most right now is that everyone except DP and my mum keep telling me I look better, its like they think that because I don't look as tired as I did 6mths ago when I was so unwell I couldn't get out of bed for 6 weeks that I'm fine now and they are expecting more and more from me and getting annoyed when I don't have anything to give them sad

fuzzpig Tue 08-Jan-13 16:15:21

I know what you mean smiling. I am not as ill as I was in the summer so people expect me to be fine, but I am really really not.

belleshell Tue 08-Jan-13 17:04:08

funny i was told today i look well..........mmmm shame about the constant headace, numb face, poor sleep, constipation, tingly fingers and wonky leg!

Grockle Tue 08-Jan-13 20:30:18

Welcome NurseJackie, confuddledCOTcome, & Reenypip. Sorry you are on this thread but it is a lovely place to vent & chat with people who understand.

Smiling, you are none of those things. I feel like an awful mother, partner & teacher... I can't do any of those things properly. And now I am unfit & fat as well as lazy & sleepy. So sorry you can't get out of jury service. Maybe you'll be dismissed on the first day? Well done for calling. I have a phone phobia so I wouldn't even have considered phoning them! I've always quite fancied doing jury service.

I often have people telling me I look well now... I think because I have a bit of colour and have had minimal pain for a couple of weeks (coinciding with being off work...) people think I'm ok. But I'm very not ok.

When I get really unwell, I start to wish i could be hit by a bus & fantasize about all sorts of horrific things that could happen to put me in hospital or bed for several weeks. I'm not suicidal either (although when you have a history of that, Drs are very quick to think that you are a liability)

SirBoob, hope you are ok. I know it's difficult.

fuzzpig Tue 08-Jan-13 20:37:58

We are in a pretty bad way at the mo. DH is asleep on the sofa already and I'm really worrying about him getting a job.

Am back in my wrist support and feeling dizzy. I would love a 'real' reason to be off too. Feel so bloody pathetic! angry

Grockle Tue 08-Jan-13 20:46:39

I always feel pathetic too but you know you're not. It's awful, feeling so unwell. And with DH being ill too... If you were closer, I'd offer to come round & help in some way but I'm too far away. If there is anything I can do from afar, I will gladly help.

belleshell Tue 08-Jan-13 20:47:00

well i have cancelled my CBT, i havent got the energy to complete a 4 page questionaire, and a diary about activity....... i know what makes me tired, its work, but i love my job and HAVE to work..... i cant have a 10 min break every hour....im not sure anybody that worls can, but when you work with people its near on impossible. So i cant see point in CBT. im not saying it wont work for others, but im not sure this counsellor understands im not depressed, i have CFS! like i have said before its not that i dont look forward to thinks because im depressed tis because i havent got the chuffin energy!!!

Grockle Tue 08-Jan-13 21:05:09

Yep... I think a lot of people don't realise that... that you can feel unhappy & not look forward to things because you're knackered & have no spoons left.

I'm going to listen to the Lupus thing on Jeremy Vine

fuzzpig Tue 08-Jan-13 21:50:41

I hope the lupus thing is interesting. My auditory processing is shit at the best of times so any talking on radio/audiobooks etc is a total no-no for me - and it's even worse with the brain fog of course.

I am a bit behind on the conversation here, I'm sorry I haven't been supportive for a while and have been very self indulgent. Mood has been really terrible. Bad time when post Xmas slump and PMT fall in the same week! Appetite has been freaking huge as well.

My POTS symptoms have been really bad the last few days - I've decided to try and keep an eye out to see if it is period related.

Also, I was briefly looking at something online about POTS symptoms being improved by tilting your bed? Putting blocks under the head end or something? Wondering whether to give it a try. There are certainly occasions - like tonight - when I don't want to lie flat in bed, and prefer to be on the sofa, where I am propped up.

SuffolkNWhat Tue 08-Jan-13 21:54:00

Hi another newbie, SirBoobs sent me the link to this thread.

I have CFS and have had it for 13 years. I am a part time teacher, have DD who is 3 and training to be a breast feeding peer supporter with the BfN.

SirBoobAlot Tue 08-Jan-13 22:17:39

Suffolk, so glad you found us, was worried I had scared you off grin I love my peer support work, good luck with your training.

Belle, I quit my CBT for the same reason. It got right on my tits. Know lots of people (with mental health issues and or ME) who think it has been really helpful. But it just made me more frustrated. I was told to take three 40 minute 'therapeutic rest' breaks per day. I have a three year old hmm

Smiling, know what you mean. When people say that to me now, I say, "I look good because you're seeing me on a good day. In reality, I feel as crap as you would look with the worst bout of flu you have ever suffered,".

Reenypip, I was in AYME too. Do hope you're holding up okay with the pregnancy as well, sounds like you have a lot on your plate.

Hello to all new joiners smile So nice to see you, but so sorry you have to join us at the same time.

Two mini rants: Firstly, my period is starting tonight. I know it is because the pain has started in my left leg, and I feel like I am going to vomit. The pain will get worse over the next few hours, will probably be sobbing by 3am.

Second. DP believes in me. He has a lot of faith in me, and hopes that I will recover. But it pisses me off. We saw an old friend on the bus today, who I haven't seen for a while, he asked what I was doing, I said X Y and Z, sadly no <insert career that I would have gone into without ME>. DP gives me a squeeze and says, "You give up too easily. I still believe you will do it. You're so bright, I know you will manage." He is trying to help, and yes, it is wonderful to have someone so much behind me. But what I would have gone into is incredibly physical; I can't even cope with the academic side of things now because of the brain fog. Know he is trying to keep me feeling positive, but if it was that freaking simple, I would already be there!!! GRRRR. Wish he would be bloody rational about it.

SuffolkNWhat Tue 08-Jan-13 22:39:45

YourDP sounds wonderful xx

NurseJackie Tue 08-Jan-13 22:42:53

Sorry I'm on my mobile so apologies that I can't reply to everyone individually. Sirboob I can sympathise I am due my period in a few days and feel really wiped out. Also have a chesty cough so maybe going down with something hopefully that rather than another relapse...
The lupus phone in on Jeremy vine sounds interesting will listen on I player.
It's a tough illness when you have a toddler to look after, I never thought I would be this unwell again. It feels like its happened at such a difficult time. An active only child and a mum who is struggling to keep functioning isn't a good combination. I'm so pleased that he has been enjoying drawing and games recently but feeling guilty re the amount of TV he's watching blush

SirBoobAlot Tue 08-Jan-13 23:15:45

Oh Suffolk, he really is. Really really is. But it is just a bit of a kick in the teeth every time I'm asked about it, I guess, and his ''it will all work out'' is helpful in a lot of circumstances. Not when it comes to things I know will never happen. I haven't told him it upset me, because I know he meant well.

Jackie don't feel guilty re TV. Cbeebies (and the Beatrix Potter ballet....) seem to be on constantly here. Needs must.

fuzzpig Wed 09-Jan-13 08:56:36

We have DVDs on loads here. As you say, needs must. I am lucky they have each other to play with though, and DH is getting a bit fitter physically now (although nowhere near his pre-injury long-distance-running standards sad) and in any case is much better at playing with them than me, especially when it comes to small world/pretending. I just can't do it blush as an Aspie I am much happier with jigsaw puzzles and Lego!

I'm really panicking about the prospect of being a SAHM, DH could barely rouse me just now (to watch DS while he walks DD to school) - how the heck will I manage 3 school runs a day without collapsing in between? DH has been brilliant doing everything in the house but he will be exhausted when he returns to work and I don't know if I could cope with doing it. And the worry about the last shreds of my self esteem, which had been so boosted by my job, but ripped apart again by this illness. I might lose a part of my identity if I give up - but then most of the time all I want is just to rest, and enjoy spending time with DS as I did when DD was little (I started work before DS was 2), and just read lots and write a book or something, because I would actually have the energy and time. That sounds lame, I have only been working 18 months FFS.

I know what you mean about the annoying optimism BTW - DH can be similar and it drives me up the wall sometimes. Although I have to say he's not been like that around the CFS - I think seeing me this ill has really scared him, and he too is panicking about returning to work because he won't be able to look after me. However with other things - for instance when he was having the operation and I was panicking - he is very "it'll all be fine". I can't blame him, he had such a shit time as a child that he would have given up without blind faith! I OTOH am a pessimist (though I prefer realist grin) - it is self protection for me, I always think the worst because that way I can't get hurt.

Sorry about the period symptoms, I've just had mine and the pain was a lot worse this time, no idea why.

Sorry for the waffle blush

smilingthroughgrittedteeth Wed 09-Jan-13 10:41:40

I've gone from being a nanny who spent the day doing crafts, running around the park, making dens, running errands, making up stories, without sounding big headed I was a bloody brilliant nanny and worked hard.

Now I don't even get paints out because I don't have the energy to tidy them up sad

I'm lucky that I didn't get this ill until my youngest started school because I can now coast to some extent and my job is now more about being a taxi service to school and activities but I feel so guilty.

NurseJackie Wed 09-Jan-13 14:34:47

Hi thanks for the reassurance about the TV! I always vowed that DS wouldn't watch it but doesn't every parent say that...
I can empathise with the optimism. DH is like that in fact just probably too laid back to worry about anything! But he has been a star the last few weeks so shouldn't complain. Fuzzpig is there anyone around to lighten the load for you in terms of helping you with the kids or housework? I'm seriously considering a cleaner for when I go back to work in a few weeks. I phoned work today to arrange my date to start back on based return and now feel panicky sad my period has arrived so hopefully I will pick up a bit. My poor friend came round yesterday on her birthday and I could barely string a sentence together!
Smiling the guilt is awful isn't it but the fact that you are there for them is the main thing.

fuzzpig Wed 09-Jan-13 15:02:14

There isn't anyone really Jackie. I am not good at making/maintaining RL friendships (a myriad of mental health problems mean I am very shy and have trouble trusting people), and those friends who are close all have big families and have loads on. A couple of friends dropped round lots of meals when DH had surgery last year but I couldn't keep asking that of them now. No family around either.

In fact I have related news - had a letter from HomeStart today saying they can't give us a volunteer after all. They had been certain they'd have somebody - due to training up new people - especially as our need, while hopefully temporary, was more immediate than others as we were referred when DH was about to have a major operation.

What it has really brought home though is the fact I have pretty much resigned myself to having no help now. I want to cry about the letter but I can't, I am too wiped out and even though I really thought it was the one thing that would work out (as opposed to all the social services things which we have not been eligible for) in a way I'm just not surprised because I'm so used to getting knocked back.

belleshell Thu 10-Jan-13 16:39:56

Hi all

hope your spoons are lasting this week. im in work again tomorrow. im back to 4 days a week.not sure how im going to get on im buggered, and started with pain in hands again (usually a big warning to slow down!!!)

fuzzpig Thu 10-Jan-13 17:57:59

I'm back on Saturday for the first time this year - went to the doctor today (my first time outside the house in nearly two weeks blush) and got my sick note with no trouble. I am not looking forward to it really. OTOH I did manage the uphill walk home without too much pain so that is positive.

I found out there is a vacancy at our smaller partner library so need to consider if it's worth applying. Our family outreach worker came today too and is organising some help for DH in finding work, and can also get some help in applying for DLA with the form etc.

Anyway, the big news is, my last blood tests (coeliac, plus repeats of stuff like iron, ESR etc) have all come back clear, so they are going to fax them back to St Barts who presumably will then make my dx of CFS official, and things will move forward a bit with work etc.

SuffolkNWhat Thu 10-Jan-13 18:11:33

Another home with plenty of DVDs & TV. The start of term is always hardest for me so DD has been watching lots of TV (we did do a bit of painting), luckily she had a nap so I caught some shut eye then. Mostly I've been blogging today curled up in my favourite chair.

belleshell Thu 10-Jan-13 19:52:46

oooooooooohhhhhh sulfolk what you blogging about? as for tv....ive put dd in bed with me recently to watch movies on a sunday afternoon..........she is 11... and snored very very loud! hehehe

SuffolkNWhat Thu 10-Jan-13 20:22:09

I'm blogging about decluttering our house, it's my NY resolution. It's hard working and having CFS but slowly things are improving on the clutter front!

Grockle Thu 10-Jan-13 22:18:22

Hello - I have read the thread but have forgotten what I wanted to say blush

Fuzz, so sorry about homestart but good news, ish, about the blood tests.

The one benefit of my being ill is that DS gets to have pyjama days. Usually, we have little time at home doing nothing but I've realised that he really benefits from time at home & it's good for us. We can be in our pyjamas at lunchtime but have fun playing monopoly or watching films together. It's noce to chill out without feeling too guilty.

I'm off to look for suffolk's blog.

Solo Thu 10-Jan-13 23:43:07

Hi all! sorry I haven't been about.
Hello all new people smile

Well, I am struggling big time atm. My ME is horrible and I've gone back to bed for a couple of house for two mornings this week and I shouldn't be as I am working at sorting my house out (another clutterbug here Suffolk and I've let my house go too ~ big time) and am running out of time before my return to work ~ which I am dreading! especially as I chatted with a colleague yesterday who told me that it is so bad at work now, that if I could find another job, I should take it! shock and I really wish I could! the training is going to kill me and the actual work thing is going to do me in too. Apparently, there is no moral at work whatsoever!
I've just got Ds to agree to doing the caring thing for Dd when I go back. So it'll mean that he'll get her up and ready for school, take her there and then pick her up from school, although there will be a slight timing problem there, so I am going to try to get someone to collect her from school and Ds will pick her up soon after...I will pay him for it, but it has to be cheaper than a cm. The only thing is that it's a massive responsibility for a 14 year old, especially as there will be times that I don't get home before 11pm.
My poor kids sad

fuzzpig Fri 11-Jan-13 09:34:01

Blogging sounds great. I've tried it a couple of times but I am useless at it! My house is a nightmare too. Did get some decluttering done last year but still an awfully long way to go. I feel mentally a lot more ready - the hoarder-tendency switch in my head has finally flipped (basically because I realised how much my symptoms are worsened by having a messy inefficient house) but I don't have the energy to carry it out. If I do use up too much energy on it then I won't be able to work. DH just said if he gets a FT job then I have to let him deep clean the house before he starts - this would be great but he has to consider his health too, if he injures himself again we are completely screwed!

Your return to work sounds scary solo sad but don't worry about your DCs - loads of teens round here take on similar responsibilities.

I'm back tomorrow and really worried about getting up. On Saturdays I don't need to leave til 7.50, so that's just about doable, but in the week it's 7.30 which means I have to get up at about 6.30 especially as I have to dress smarter (Saturdays are casual) and navigate around DH getting the DCs ready for school etc. DH has been wonderful at giving me lie ins - I only get up at 8.10 to watch DS while he takes DD to school, and 10ish on weekends. But it's so hard for him to wake me at 8, I feel so groggy. I was hoping to increase my amitriptyline again to 50mg, but I think it might push me over the edge into unwakeable!

Lottiegal Fri 11-Jan-13 13:23:30

Hi all, just wanted to say hello, as I think I may be a cfs. Apologies for copying and pasting from the 'aibu' thread but wanted to canvas opinion on what I'm going through. I'm Jo by the way...

Probably should be in the health section I know but might pop along there in a mo. Brief history, I had some kind of 'crash' or chronic post viral thing while I was working 6 years ago, and ever since I've had some relapses when I get tired/run down. I haven't ever got a solid diagnosis of this from the doctors, even though I've moved a couple of times and been to different surgeries. I have also had three children in the interim (which I know is tiring) I'm now a sahm.

Since moving in the past year I have been ill on and off for months with various virus etc, but I have also been getting chest pains which have scared me. While I know this could be something to do with a virus, I wanted the docs to run some tests for heart problems and any other related things like thyroid/anaemia, and an ecg and chest xray, which was fine. They all came back clear.

Then over Christmas I was really poorly and the chest pains very bad so I went back and they still said they could find nothing wrong with me. That was almost three weeks ago and I still feel very tired as if I still have flu so went back to the docs yesterday and he was getting a bit shitty, listing all the things they have done to rule out anything serious, then he said are you depressed! He now wants me to do a test for depression and anxiety. I am in no way depressed (well only that I can't find out what's wrong, but anyone who know me would say I'm not, and I don't feel depressed)

I actually feel really angry with the doctor and feel like he doesn't believe I have genuine chest pain. Do you feel this is unreasonable? P.S I did have depressed as a teenager, which is his premiss for insinuating I have depression, but for that very reason that is why I know I am not depressed now iykwim.

belleshell Fri 11-Jan-13 14:32:39

Lottie, the anxiety and depression score will show you are severly depressed, (even thou you arent) just by the nature of the question. things like in the last 2 weeks have you loked forward to things...the answer will probably be no but not because you are depressed but probably because you are s tired or have so much pain, you cant look forward to anything...

Is there another GP in the surgery you can go to? if not take the NICE guideliens to the GP and say this is how you feel can he refer you to the ME/CFS clinic. some anti depressents help with pain releief, i take duloxetine, and i have to be fair and say when i dont take it my pain is worse. Im so sorry no one is listening, most of us have been through the same. it took me 10 years to get a diagnosis, after lots of misdiagnosis!

Fuzz...could you take ami a little earlier i take mine at 6pm..

fuzzpig Fri 11-Jan-13 14:42:12

I already take it at 5pm Belle sad

Hello Lottie, sorry you are not being listened to. I think I was really lucky with the doctor I originally saw - he was very trusting and believed that as I had plenty of experience with depression, I knew the difference. I hope you can see a different doctor within the same practice.

It does sound very like CFS especially as you've had so much ruled out. Have your blood tests included autoimmune system? The abbreviations are ANA and ANCA - they test for illnesses like lupus.

fuzzpig Fri 11-Jan-13 20:55:04

By the way do any of you lovely ladies use a footstool? Quite tempted...

Grockle Sat 12-Jan-13 03:26:26

Lottiegal...that is pretty much what happened to me. I was eventually referred to a psychiatrist which turned out to be a blessing. He asked lots about my symptoms & history & referred me to rheumatology which, after 2 years of problems, really got the ball moving with further tests, X-rays, ECGs etc. a year on, I still don't have a firm diagnosis but am now close, having had a myriad of other conditions ruled out.

It is very frustrating, I know, but please persist with your GP. smile

Grockle Sat 12-Jan-13 03:31:53

Fuzz, I recently had my ami increased from 50-75mg & found the change really hard. I was groggy & yucky the next day. But, after a couple of weeks, it has settled down & I feel ok. It's a but of a nightmare with work, but if you can bare it, it knight help?

Solo, lovely to see you here again. So sorry about the DC. It's a nightmare, isn't it? DP doesn't live with us so DS has to help me out a lit more than a 7 yr old should. He now has support from Young Carers. Would that be any good for your DS? They've been brilliant with mine.

<waves at Belle>

Grockle Sat 12-Jan-13 03:40:40

Also, does anyone else get:

* sore bits on their scalp? I get bumpy bits on top which hurt and then I pick them and they don't go away.

* sore bumps at the baseof their skull, so it feels like someone had hit you over the back of the head with a shovel?

* dry, swollen eyelids?

I realize I sound utterly hideous and that's not far from the truth blush

My insomnia is bad, can you tell? grin

fuzzpig Sat 12-Jan-13 08:10:08

I get the odd bump but I figured they are just spots.

What does confuse me is that every now and then I get a tingly bit on my scalp, like pins and needles but concentrated in one really small area. Always in the same place too hmm

On the bus to work at the moment. Feel so crap and struggling to stay awake!

smilingthroughgrittedteeth Sat 12-Jan-13 08:46:25

Yes to the bumbs on head, although like fuzz just assumed it was spots.

I get a sharp pain at the base of my skull to, its like having a hot spike stuck in there then it goes away.

My eyes are always dry and irritated especially near the end of the day and I have sore ears its not earache they aare just sore

Does anyone have sore feet? This is fairly new but they hurt all the time, even when I haven't been standing on them.

belleshell Sat 12-Jan-13 15:38:18

3 days in work= manageable
4 days in work= saturday in bed and lead suit is backsad

fuzzpig Sat 12-Jan-13 17:31:58

Aww belle sad sorry to hear that. It's hard finding the balance isn't it. Even if I did manage FT (and I'm starting to accept that I almost certainly won't) I would hav absolutely no life other than work.

I found myself wondering today, given the way in which CFS makes us suffer for exertion, if there was a mathematical formula to describe the relationship between time spent 'overworking' and 'increase in illness time overall' ie does working one day mean I will then be ill for an extra week?

<geek emoticon> blush

Anyway. Survived my first day back, it was quite nice although my paranoia ruined much of the morning as I get so scared that I don't fit in anymore (and therefore start wondering if they ever actually liked me in the first place!). Developed a horrendous headache at lunchtime which just won't shift angry haven't had one this bad for ages, and it's similar to the recurrent ones I had early last year (before I had my first major CFS lapse) which resulted in neurology referral, except this is on both sides not one. Really hoping dinner and sleep will fix it!

Grockle Sat 12-Jan-13 17:48:41

My feet are about the only thing that don't hurt. Thank you for all the responses to my questions.

Belle, I think that's the same for me. 3 days is manageable, 4 pushes me over the edge. I think come September I might try to change to 3 days a week & just deal with the financial impact.

I love the idea of a mathematical formula, Fuzz. I'm glad to hear you survived the first day. I hope dinner & sleep sort your head out.

smilingthroughgrittedteeth Sat 12-Jan-13 19:15:31

Im another that finds 3 days manageable but 4 days wipes me out, right now I cant imagine ever going back to the hours I used to do.

Financially 3 days is really tough to manage on but its better than ssp which we had to survive on when I pushed myself to hard and ended up off sick.

Ive had a tough week but want to thank you all for not judging me when I needed to moan and rant earlier in the week, ive had a nice relaxed day and am feeling a bit better.

belleshell Sun 13-Jan-13 16:00:30

i go to 5 days in feb!!!!!!!!!!!!!!

fuzzpig Sun 13-Jan-13 16:06:54

Oh no belle sad

5 days is killing me. Yesterday was ok except the headache, but I'm really suffering today (for ONE day FFS) I feel like my muscles are on fire. I managed to hang out one basket of washing on the airer and had to stop. It's like burning inside when I overdo it, I don't know how else to describe it!

I went really wobbly earlier, my hands were shaking and I got a weird ache in my arms. I've had that every now and again for years though. It happens when I forget to eat blush but it wasn't even lunchtime and I'd had breakfast! When I get it I just need to eat something quickly.

fuzzpig Sun 13-Jan-13 16:07:22

And smiling don't worry about thanking us we all support each other smile x

belleshell Sun 13-Jan-13 18:11:48

yeah fuzz my hands are burning too and i have my lead suit on again!!! thats how iknow ive done too much, although im not sure what ive done that was too much!!! sad

Smiling thats why we are all here cos in the real world others dont quite get it!

Grockle Sun 13-Jan-13 20:59:25

Eeek, 5 days, Belle. I have to do 4 1/2 some days this term & that will be hard. 5 days is very definitely too much. Even the 4 days I do is a struggle as I have no life other than work & ferrying DS about.

Fuzz, you don't sound well at all sad I get the burning muscles but not the arm thing you described.

I have my lead suit on & am fresh out of spoons sad Praying for a snow day but tis highly unlikely down here... the palm tree in the garden always looks funny in the snow.

magso Mon 14-Jan-13 10:26:32

I feel very lazy in comparison to all of you. I only work one (short) day a week (plus caring for SN child) but occasionally do a second. I am just getting to the point where a second day at work will not cause a full on crash but still struggle to talk/think/walk on the second day. It has been a very slow increase from only managing a couple of hours (nearly 3 years back) to today. I know I am lucky to be able to work so little- for me accepting that I could not return to my previous hours was hard (read guilt) but I think needed to stabilising my health.
I get heavy aching arms like I've been weightlifting but for no reason - but it sounds different to you Fuzzpig. I do however have symptons which in the past meant I needed to eat so (misinterpreting) I eat and have got podgy in the last year.

I am hoping to be assessed (to see if well enough) for exersize therapy this week. I can walk much better than last time and even got up 2 flights of stairs (without a long rest part way up) so I am so hopeful. It is now more that a year since my initial CFS clinic assessment - and I have made a lot of progress in stabilising my pattern of keeling over from total exhaustion. In fact I don't think I have fainted/lost consciousness for a whole year now! Progress! Had a 24 hour tape done last week (for cardiology) and felt on top of the world (for me) that day so I am sure it will show absolutly nothing ( apart from mild tachicardia). The 24 hour tape (well its about 20 hours really) misses the early morning which is when I am most likely to get the almost faints and 'drunk' legs. The day after the tape was a different story and I was back to the lead suit Belles described and struggling to get upstairs. I think it was a minicrash from the 2 (local)hospital trips so perhaps I should have done something the day before rather than save my energy (as we all have to) to manage the hospital trip the next day.

Sorry every one is so unwell at present. Wishing you all improvements and extra rations of spoons all round.

SuffolkNWhat Mon 14-Jan-13 11:58:19

Blimey Belle that will be tough!

I've got a virus and a high temperature which means of course my body has crashed and I'm in bed. I ache all over, I think I overdid it this weekend as well which hasn't helped (we are redecorating).

Megsdaughter Mon 14-Jan-13 12:10:10

Hi Dont join in much sorry (used to be shoshe) but in a really bad flare with Lupus at the moment.

Discoid Rash over my torso, really painful joints.

Been put back on Steroids which really pissed off about as started to diet after Christmas and have lost a stone. Steroids are not going to help that!

Just want to rant really.

It seems one step forward two behind at the moment.

magso Mon 14-Jan-13 13:11:19

Megs rant away - I sympathise with the steroid weight gain and shape change! I have had loads of high dose steroids which has really messed with my body shape and weight ( and self esteem). Hope they knock your flare up on the head though. Are you likely to be on them a while?
Suffolk hope you recover properly and quickly from your virus.
Belles the idea of working 5 days a week whilst ill is unthinkable. However I know in the past I would have tried too.

Megsdaughter Mon 14-Jan-13 14:00:14

Mags, got to see the Dr again next week, I have a weeks worth now but last time I was on them for ages.

I was diagnosed ten years ago, and up till now was pretty much under control.

But the last year or so gradually getting worse.

I was working full time as a nanny until September, now I only do term time , and private school terms at that, anymore and Im wiped out.

Always been bloody minded and it wasnt going to take over my life, but it finally is beginning to.

belleshell Mon 14-Jan-13 20:15:22

Megs im with u, this was never gunna beat me!!!! it has, Im 40 this year and my close friends are all celebrating in different ways, one is adopting ( it just seems to have fallen around her birthday) one is having a party and im panicking already at the thought f a night out...and another whose birthday is same week as mine and we have always shared celebrations as invited me to ibiza for 4 days...........obviously i cant go, she is a proper pary animal.... i told her a national holiday would suit me more!!! to which she laughed... i was deadly serious....

i hate ME

Solo Mon 14-Jan-13 23:31:49

Hello all!

ME wasn't going to beat me either; I just pushed myself harder sad stupid thing to do...

I'm back to work on Monday. Dreading it so much.

fuzzpig Tue 15-Jan-13 07:04:01

Hi meg thanks

I am kind of the opposite in that I've never been one to really push myself physically. I am optimistic in that I do believe I won't have ME forever, but I do think that for the moment it is going to beat me, if that makes sense?! I feel like I just need to let it take over for a while, and just STOP.

Various things I've read have had sufferers saying that they only really started getting better when they admitted just how ill they were and actually slowed down/stopped properly to give their bodies a chance to rest and recover.

But then I get worried that if I stop totally I will never be able to start again because I will get deconditioned... Argh!

I managed an 8.30-7 day yesterday and had a hellish journey home in freezing rain angry thankfully today is just a half day.

Megsdaughter Tue 15-Jan-13 08:19:55

I have Lupus not ME, although I do have Fibro with it. I find when I'm off and not busy I feel worse.
My boss is fantastic tho and insists that when the LO is sleeping I sit down for a hour.
To be honest my job is fairly easy. Only one at home and one at school.
We go out to groups and such in the morning. And play at home in the afternoon, or weather permitting the garden or park down the road.

I will be 54 in feb and I think once these children have grown I will retire. I was suppose to when I gave up full time childminding 3 years ago but got bored to quickly smile

magso Tue 15-Jan-13 09:23:49

Well I have a day at home today - so no more excuses to avoid the chores.

I think I have accepted I have CFS/ME and must listen to my body and go with it and avoid gettting so tired I cannot talk/stay upright. What I have not accepted is that we just have to put up with it. I just think medical science has not yet established the cause and treatments yet so we have to find our own way. I think in the early days the searching took up quite a bit of my energy - now I know there is no fast fix - just a hopeful search to find my way slowly to a better level.
How are you Solo after going back and Fuzzpig hope you are alright this morning after your long day.
An understanding boss is good - although I think all should be. Rest you should Megs but it so much easier when you know your boss insists on it. I am sure you do not get 'lunch breaks' - so it is sensible to have your break when your young charge is sleeping. Don't feel guilty! I had a collegue who used to remind me to rest when ever I needed (even when we were busy) which made it easier to actually stop.

SuffolkNWhat Tue 15-Jan-13 14:33:28

magso I can identify so much with your post.

I know I have CFS but I don't have to like it and the fact we just have to wait it out?! I am having more and more crashes (in one at the moment) and to avoid them it seems I will have to give up work and looking after my daughter because that is what causes them but there is no way I can either, especially for my daughter's sake. I hate that she is only 3 and already understands that Mummy hurts a lot and can't take her out as much as I'd like. Thank goodnes for my wonderful DH and in laws.

Grockle Tue 15-Jan-13 20:17:06

Oh megsdaughter, sorry you are suffering. I remember you from years ago. I think you live in my neck of the woods. I'm glad your job is not too tough atm, that makes a difference.

And Suffolk too sad This is the perfect place to rant though... feel free smile

How is everyone else? Belle, Magso, Fuzz, Solo, smiling?

I'm doing ok. I did sleep in the car on the way to work this morning and again when I got to work. My boss came in and woke me up blush

Megsdaughter Tue 15-Jan-13 20:22:01

I did indeed Grockle but over over a county now grin

Feeling better today. steroids are working and skin isnt so itchy.

DH is away at the moment so I am coming home from work, having a meal from the freezer (DH does all the cooking and has left me meals already done) and curling up on the sofa with the dogs.

We organised a dog walker for while he is away, I dont think I would have coped working then having to walk them.

Grockle Tue 15-Jan-13 21:07:27

A dog walker is a good idea. My poor girl doesn't go if I am ill & DP away. That's very rare though & she does have 5-8 mile walks most days so I don't feel too terrible!

DS seems to be going through another bad patch but I don't know why.

confuddledDOTcom Wed 16-Jan-13 02:04:13

I marked my spot and never came back blush

OK, so here's the story. Until 2005 I didn't think there was anything wrong with me, apart from being a hypochondriac, being very cold and the fainting a lot! I had an early miscarriage but it was my first time so we weren't too worried, then I got pregnant again straight away and I went into labour at 19 weeks, our daughter was born alive so they knew something was wrong with me and I got lots of testing. From that we discovered the Hughes Syndrome and I went on to have 3 more little girls and just before Christmas our first son. All my pregnancies have been healthy although irritable and I deliver early. Our son is the earliest at 29 weeks, he's still in hospital which I'm finding a little strange and sad being separated from him and he's in another town so I can't see him often.

Anyway, a few days before the 19 weeker was born I had a nasty fall and have had PGP ever since, I've needed crutches for the last 4 years or so. I saw the Lupus clinic after my diagnosis (Hughes is generally covered by Lupus clinics as the nasty big brother) and they found out from there I get TIAs rather than fainting (hardly surprisingly starting at 13 when I went on the pill for my awful cycles) I have Raynauds which is why I'm cold and of course it explains all the general aches and pains I get and a few random things I never expected.

In 2011 I was pregnant with our youngest daughter and had a week where I could barely get out of bed, I could only do one direction on the stairs without ending up ill, so needed to go to bed every time I went to the toilet. I stupidly convinced myself I had a PE (stupidly because being a thrombophiliac I'm at greater risk so I should have got someone to take me straight to hospital!) but waited from Monday until my antenatal clinic on Friday before telling anyone! By that point I had ruled out a PE as I wasn't dead, I knew it wasn't asthma and pretty sure I didn't have a chest infection. As I see rheumatology when I'm pregnant they were the right people to see, they went through the same checks I had and came to the same conclusions, she then started to poke me in particular places and ask if it hurt... I had all but one trigger point for fibromyalgia. I had an assessment with an anaethatist to see if I could have an epidural as they'd failed in the past and he found that area of my spine is badly damaged from the fall.

Then last year I was out with Mum and my husband and was getting really bad sulphur burps. Convinced I was dying they rushed me to the out of hours GP. I knew I'd had it before but I guess I'd never gassed the car out before! They didn't really come up with an answer, gave me gaviscon to try and control it. I carried on like that for awhile, bloating up painfully after a meal, it hid my pregnancy for awhile as I looked about four months, I lost about a stone as I was unable to eat and losing everything I did eat pretty much straight away with painful runs. Calmed down in pregnancy but since the baby was born it's started up again. The GP thinks it's IBS but couldn't do much testing before as I was pregnant, I'm going back on Friday.

I currently feel like I'm falling apart, my back is painfully spasming regularly (which is new), the IBS (or whatever it is) is back with sulphur gas going both ways, my tummy constantly moving (for want of a better word), constant migraines (also new! I've had the odd one but nothing like this) and of course to top it all off I'm trying to express which is leaving my boobs tender.

My eldest had a couple of nasty infections last year which left her with CFS, she was on part time school for the last half term of the academic year but hasn't had a day sick this year grin she's still not brilliant, but she's working hard to keep going, the insoles she got a few months ago have really helped to reduce the pain she's in which has made her less tired.

Sorry for the essay blush just nice to get it all out because it's really getting me down at the moment. No one IRL seems to appreciate what I go through, I had a conversation with Mum who'd heard on a programme I think that TIAs are a sign of something and I should get them to check them out, I kept saying "Yes Mum, I have Hughes Syndrome!" but she doesn't appreciate what a nasty disease it is so she can't understand that it's about what you'd expect!

magso Wed 16-Jan-13 17:15:58

Hi confuddled sounds like you have had a tough few years.
Guilt at not being able to do as many active things with our children is something we all seem to share. My son is older (13) but because of his SN does not fully understand my limitations although like you dd Suffolk he understands when Mummy hurts- I cannot imagine how we would have managed if I had got ill when he was very small - at least he has mostly got over hi 'running' phase. He can be very sweet when I get wobbly and get me a blanket. Hope you are getting over your virus.
Good you are feeling a little less itchy Megs. Hope your flair up is soon under control. I had heard Lupus can improve with age, so it must be double frustrating for this flairup to be happening.

smilingthroughgrittedteeth Wed 16-Jan-13 19:22:09

Hello everyone, I dont have the energy or the attention span to read everything ive missed over the last few days so will try and catch up tomorrow.

Ive had a really stressful day, the jury people finally got back to me at 3.50pm today and said that unless I can provide them with a drs note by Friday I will have to report for jury service on Monday!

I obviously couldnt get a dr appointment today at that time and my gp doesnt work Thurs or Fri so I went into melt down, I asked the dr's receptionist if she could ask the gp to call me and she said she would pass the message on but couldnt promise anything, this caused me to completely shut down and dp found me asleep on the kitchen floor blush

Lovely gp rang at 6.30 and is writing me a letter and faxing it to jury service tomorrow, she is also chasing up an appointment with endocrinologist, so fingers crossed I will be excused from jury service.

I am exhausted and am in bed already, dp is making hot chocolate then coming up to watch a film with me.

magso Wed 16-Jan-13 21:41:40

Fingers crossed for you smiling.

Grockle Wed 16-Jan-13 21:44:13

Oh, confuddled sad Welcome. What a tough time you've had. And smiling... I'm glad you got a doctor's note & can be excused.

belleshell Thu 17-Jan-13 14:23:59

((((((((((((((((HUG))))))))))))))))))) confuddled and spoons to u all........ just popping bye to say hello.... and off to slap myself for making a bloody stupid mistake in work today.....

Grockle Thu 17-Jan-13 21:53:52

Oh Belle... you ok?

fuzzpig Thu 17-Jan-13 22:12:52

Oh no what happened?! (unless you aren't allowed to say obviously)

I have had a good day working at the smaller library, I was supposed to be applying for the job there tonight but I am still dithering because dropping my hours is such a massive deal and it scares me. Plus the fact I feel so massively unconfident that I don't think I've got a hope in hell of getting it anyway.

Finding the form exhausting but gradually ploughing through it and then the fucking website crashed... bollocks.

I am so very very tired and sore and generally in a shit mood.

magso Thu 17-Jan-13 23:02:22

Grr- computer did that to me once Fuzzpig and I never did go back! Dropping my hours scared me too so I fully understand. However for me it was the only workable option (except giving up completely which might have made more sense financially) - I did not want to stop work and loose the last bit of me to ME! If you apply for the little library post you have a chance - and can always turn it down if you decide against it. If you do change and then later want to return to longer hours you will be even more valuable ( having worked in several settings) and could apply for a fuller time post if and when.
Belles hope you are OK! Grockle how are you? CFS team are awaiting OK from cardiology before I can do physio and exercise - so a bit fed up but whats another few months?

Megsdaughter Fri 18-Jan-13 08:10:39

Dh away, and the dog walker cant get to me with the snow, I cant get to work, (middle of Salisbury Plain, its a bit white here) NannyBoss is a teacher and her school is shut so its ok shes told me to not even try.

Dogs will not be walked today, they can keep me warm on the sofa. grin

belleshell Fri 18-Jan-13 10:15:04

i made a medication error!!!! everything was ojk but i am cross with myself, because i was helping out in a different area, an thought something was amiss but didnt say anything until patient had gone!!!! he is ok, nothing untoward occurred but this is exactly why i need my wits about me, and my wits where elsewhere yesterday!!!!!

Fuzz, i think you should go for the job.... you have said yourself you dont think you can do full till atm, and at least u will still be working in a job you love, without the full time pressure...and if you dont apply u might regret it...regret is a terrible thing..
Good Luck

fuzzpig Fri 18-Jan-13 12:54:11

You are right of course. I was just feeling so exhausted last night that I felt 'what's the fucking point' y'know?

Anyway I woke up early and sat in front of our new heater wrapped in the blanket (slept downstairs as DD was in with DH) and did a bit more, then took my lunch into the workroom just now and have finished it. Thanks all thanks

Now trying not to panic due to snow. Manager being very accommodating though. Thankfully I'm only one bus away and so far (I keep checking the website) they are still running.

I have been asked if I'd hypothetically be free tomorrow as it is expected to get worse but there's no way I could walk in - an hour would half kill me!

smilingthroughgrittedteeth Fri 18-Jan-13 15:50:17

I have been excused from jury service, they have just rang, I am so relived I actually cried, dp thought they had said I had to do it and was all set to march down there and demand they excused me until I managed to croak out that it was ok grin

Im still exhasted, I dont think its helping that im 7 days late for my period and feel bloated and crampy (sorry tmi)

fuzzpig Fri 18-Jan-13 16:00:04

Oh thank goodness smiling! What a relief. smile

We got sent home early and I am now sitting on the sofa with the heater on, eating chocolate and listening to my newly-bought Corrs album while watching DH and the DCs play in the snow.

And THAT my friends is how you do a snow day. grin

Grockle Fri 18-Jan-13 16:19:11

Megsdaughter, sounds lovely. I walked the dog but only a very short walk. It's been lovely snuggled at home with DS. His school was open but i kept him home since the other 300 schools in the area were closed. I'm a teacher so should know better than to let him have a day off but I figured he'd benefit more from a day in the snow with me than another day in school.

Fuzz, I agree with Megs. And your day sounds lovely.

Great news, smiling. Phew!

fuzzpig Fri 18-Jan-13 16:36:54

I am actually thinking of applying for another job too BTW shock

It's in a school office, so better hours and school holidays off, and all seated without the physical exertion of library work. I really don't know if I should or not (and TBF I may not have a hope in hell of getting it anyway) but it doesn't close for another couple of weeks. I wasn't even really thinking of trying to change jobs but I saw it on the council website.

fuzzpig Fri 18-Jan-13 16:46:43

Oh and in really exciting news I think I have actually made a RL friend shock she is relief staff at work so not in regularly but we really get on well. Normally I'm so guarded these days and don't let myself get close to anyone in RL but I don't have that worry with her as she is very friendly and affectionate.

She actually had suspected ME before and does still get fatigued easily so it has been really nice for us both to be able to talk about it too.

Now all I need is for you lovely bunch to move to my town and I'll be all set grin

smilingthroughgrittedteeth Fri 18-Jan-13 18:14:43

No fuzz you are all moving here, I have it planned we are going to live in a huge house and look after each other, share dog walking, cooking and cleaning and when anyone tells one of us to work through it we are going to band together and beat them with umbrellas grin

We still havent got any snow so no snow day here sad it is -5 though so im huddled under a duvet

belleshell Fri 18-Jan-13 19:02:22

snow just startig here....im hoping i cant get to bradford tomoz for my exams.................. oh when we moving in grin

KatyMac Fri 18-Jan-13 19:08:27

Hi everyone - I've had CFS since '95 but I cope really well as long as i don't get too ill

But now DD is post viral & I'm a bit panicky as I don't want her to end up like me sad

Is total rest or graduated return the current thinking?

Sorry to hijack

Grockle Fri 18-Jan-13 19:49:23

KatyMac, no idea what current thinking is, I'm afraid but welcome.

Lovely that you have found a friend, Fuzz. The school office job sounds fab - that's what I'd love to do.

Grockle Fri 18-Jan-13 19:50:55

I love the commnue idea!

SirBoobAlot Fri 18-Jan-13 19:52:56

Hi everyone, hope you're okay.

Katy, read recently that the suggestion of 'graded exercise and CBT' may actually be more damaging for CFS sufferers. I think, do what works for you, though, as everyone is always affected differently.

Anyone else dreading going out at the moment for fear of falling on their arses?! grin

Megsdaughter Sat 19-Jan-13 10:45:31

SirBoob I just did smile

SirBoobAlot Sat 19-Jan-13 10:53:00

Oh no, are you okay?

fuzzpig Sat 19-Jan-13 11:03:50

D'oh! Hope you're ok.

I'm not too worried myself but I can really sympathise with the worrying because for the last couple of years DH was on crutches and it was quite scary. This time is ok so far though which is lucky as I now work FT so DH has to do all school runs.

DH has just taken DD in to meet her big [half]sisters who are babysitting for the first time ever! They are 14 and said last week they'd like to take her to the cinema with some other friends smile

As for me I offered to go into work today (even got up early and <gasp> had a shower just in case) but they don't need me (yet) so I am eating carrs water biscuits with salted lurpak - purely to increase my salt intake of course grin

CFSKate Sat 19-Jan-13 12:17:59

This year's London ME conference, discount registration has started

KatyMac Sat 19-Jan-13 15:36:49

Neither DH nor DD are taking the need to rest seriously

I am terrified tbh - she is only 15

SirBoobAlot Sat 19-Jan-13 19:13:26

Thanks for that, Kate, but seriously out of my price range... Surprised at the cost of the tickets, tbh. Seeing as the majority of ME sufferers are on a limited income, £45 as a concessionary rate is going to be impossible for a lot of people.

NurseJackie Sat 19-Jan-13 19:26:32

Hi KatyMac I would suggest rest, thats the only thing that helps me when I'm in acute stages (I never want to admit defeat but it really is the only way). It must be very difficult though at 15 to slow down when all you want to do is be a 'normal' teenager. CBT seems to be helpful sometimes. I'm familiar with CBT (im a nurse) so I use it on myself! But I would be cautious with Graded exercise. Action for ME have a site specificially for under 25s - might be worth checking out?
Smiling - glad you dont have to do jury service - what a relief!
Fuzzpig - the other job sounds good, I would go for it. And glad to hear about the friend you have made smile
Belleshell - we have all made mistakes, glad everything turned out ok. The cognitive part of ME-CFS is awful sad

Hi to everyone else!

Well my haemacromotosis (high iron) result isnt back yet, that was taken well before xmas!!! This GP is convinced there is something physical going on thats causing the fatigue but I'm not convinced. Having had it for ten years and it waxing and waning and also having lots of bloods done at other times, I think they would have picked whatever it was up by now! I'm going back to work phased return on wed and actually feeling ok about it. I seem to have picked up a bit in the last few weeks thankfully. I'm probably up to about 60/70% now which is a big improvement on the 30-40% I was in november.

Sending you all spoons and hope you are all as well as possible

KatyMac Sat 19-Jan-13 20:39:33

Oh NurseJackie - she doesn't want to be a normal teenager; she is a competitive Ballroom dancer with Ballet scholarship

I'm panicking unnecessarily as we are only a week in - but with my history you'll understand why

Grockle Sat 19-Jan-13 20:49:38

Just caught up - hope everyone is ok. I worry a lot about DS being unwell (either mentally or physically) like me. He's not doing very well at the moment & I worry about him being depressed. At 7. sad

I've managed a lot today. A lovely walk with DS to town for a coffee with my family & then a drive to the Forest where we did a big, snowy, muddy walk, looking for places to sledge. Then out for dinner but we had to come home because by 6.30, I was falling asleep.

SirBoobAlot Sun 20-Jan-13 00:24:29

<hands around spoons and hot chocolate>

Supposed to be going to (wait for it...) exP's mum's cousin's grandson's birthday party tomorrow. What actual relation does that make him and DS?! Never mind. I love the family, but I am so not in the mood.

Grockle Sun 20-Jan-13 04:38:08

Sounds complicated sirBoobs. Do you get on with exP & his family? Hope it is ok.

I've woken up in pain all over. I think that hiking through a snowy forest may not have been a good plan.

And I'm wondering how best to shift this extra stone I have put on. I can't believe I weigh so much sad

SirBoobAlot Sun 20-Jan-13 09:46:40

Snowed in, can't get there. Relatively relieved blush The family are lovely, actually, and I see them way more than exP does hmm but I feel really rough, physically and mentally. Can't form a comprehensive sentence today, much less have a discussion.

Hope pain eases off Grockle sad

Megsdaughter Sun 20-Jan-13 10:57:59

Grockle, Myfitnesspal! Ive lost a stone in a month with it. And Im never hungey or do without.

Example to day its homemade Chicken Casserole, followed by Apple Crumble and Custard for lunch, breakfast was porridge and tea will be Tomatoes on toast.

Plus fruit through the day as and when I need it.

fuzzpig Sun 20-Jan-13 12:53:42

Sitting inside again while everyone else enjoys the snow <sigh> felt reasonably well yesterday until the evening when I fell asleep early, but woke up in massive pain angry

My hips hurt a lot lately, especially at night/early morning, like I've been sleeping on a bed of concrete instead of a mattress?! What's that about?

Am watching our new futurama DVD though so not all bad - just hate hurting so much. Dreading tomorrow now as I'm doing 8.30-7 sad

SirBoobAlot Sun 20-Jan-13 15:51:02

Fuzz have you tried putting an extra duvet under your sheet? Summer duvets have a use in the winter. I have to build myself what DP terms my 'nest' before I go to bed - a cradle of pillows and cushions to support all my painful parts. Bless him, when he stays over, he to kind of mold himself around them...

Grockle Sun 20-Jan-13 15:56:00

I have installed my fitnesspal, whilst eating a wispa gold blush

I think it will motivate me so thank you for the recommendation. I know weighing less will make me feel better about myself mentally but I'm hoping that it will make my body physically better too. I wish i could eliminate a food type or something to fix this.

Grockle Sun 20-Jan-13 15:59:54

I make a little nest too grin pillows at certain angles in certain places.

DP is having yet another bout of bad depression. I never know what to do. He's so different to me when depressed, so passive and helpless. I find it really frustrating blush

Megsdaughter Sun 20-Jan-13 16:02:47

Grockle will do it with you f you like?

SirBoobAlot Sun 20-Jan-13 16:13:04

A lot of my friends have lost weight by eliminating carbs, but if you have a condition like ME it gets more complicated... GAH.

I'm sorry DP is depressed, Grockle. Does he have any professionals on board?

Grockle Sun 20-Jan-13 19:22:02

Ooo, would you, Megs? I'm much more likely to stick to it if I have to be accountable!

belleshell Sun 20-Jan-13 19:32:49

Im doing weight watchers...itsa week 2 but couldnt go cos of exams....so i will be good rest of week...i have been shocking last 2 nights (eating toast whilst dishing up tea...etc) but today done ok, gunna have horlicks and my stable rich tea...so im happy to support and really really need supporting when it comes to weight loss...

i have 18lb to lose...

just been looking over exam questions and what answers should be.....if i pass it will be a miracle...starting a new job, developing a service, ME/CFS crash 12 months in and a distance learning course i really didnt want to do isnt the right frame of mind to be in...still i have spent last 2 days in college and i have done assignment, so i have given it my best shot, and i have eventually got my head around the angiotensin-renin system!!!! its only taken me 17 years..

Grockle Sun 20-Jan-13 20:13:14

SirBoob, he has been discharged from the MH team so has his GP and nothing more. He's been off work for 18 months with it & I can't handle it anymore. On Thursday, school contacted me to say that DS had been upset because of problems with DP. They've been bickering lately and although I've tried to sort it out DS doesn't listen and DP gets cross because he sees me being stressed & that tends to make me ill. I don't know what to do - I've told DP to stay away for now. I really think I need to end things with him to help me be more stable, calmer etc but he does so much at home (if I write a list), we used to have so much fun together & he was fab with DS. And I love him blush. Why is everything so complicated?

Well done, belle smile

Megsdaughter Sun 20-Jan-13 20:16:24

Grockle have PM you

fuzzpig Sun 20-Jan-13 20:22:57

BOLLOCKS BOLLOCKS BOLLOCKS

Buses have been running absolutely fine all day - have been keeping an eye on website despite being in jammies all day! But now they are cutting out half of my village which means a long walk tomorrow, in snow and ice sad I was fine with this last year but this time it will be a real struggle.

Really hope we at least close early as I don't fancy plodding home in the dark. I don't think other people will realise just how ill it makes people like us. It's not like being a bit sore after the gym (which actually I used to quite like IYSWIM as it meant I had worked hard) it could be enough to cause a relapse FFS.

You know what really pisses me off is that on our nearest roads it's not even the snow that causes the problems, it's muppets who try and drive in the clearly impassible snow, and then give up after a few hundred metres because they inevitably get stuck and have to abandon their cars in the road. Means that even when the snow melts the buses can't get round angry angry angry

End rant!!!

Duvet nest sounds good boob - when I was pregnant my mum lent me a huge body pillow and even now sometimes I stick a pillow between my legs blush. I am trying to find a way of propping the head end of the bed up because it's supposed to help POTS, which is really bad ATM. DH had a door under his side of the mattress for over a year due to his back so it's his turn to put up with it grin

Katy, how's your DD doing?

KatyMac Sun 20-Jan-13 20:24:58

Miserable, thanks for asking & she is contemplating starting a MN thread to cheer herself up

Grockle Sun 20-Jan-13 20:27:04

Thanks meg, will read now.

Fuzz, I sleep with a pillow between my legs. No idea why it is more comfy but it is! Sorry about work & buses tomorrow. Sounds like a nightmare. I hurt a lot today after my fun in the snow yesterday but it was entirely my fault. If you were nearby, I'd give you a lift.

Grockle Sun 20-Jan-13 20:27:57

She should, Katy. Sorry she's not feeling great.

Solo Sun 20-Jan-13 23:40:59

Back to work tomorrow, wish me luck! catch you all soon.

Grockle Mon 21-Jan-13 01:42:38

Good luck solo x

fuzzpig Mon 21-Jan-13 06:56:18

Best of luck solo! Hope you can ease yourself in gently and that it's nice catching up with people.

Buses are running slightly nearer now, still got a bit of a walk but not nearly as bad. But as I thought the remaining problems are caused by badly parked cars hmm. It's not supposed to be snowing until tomorrow so hopefully the journey home will be ok.

Megsdaughter Mon 21-Jan-13 08:27:33

Grockle have messages you on MFP think I need your email smile

magso Mon 21-Jan-13 10:37:16

Another bed-nest builder here. Our bed is just too heavy to lift, so I have tried to use additional pillows to raise my upper body but its hard to get everything comfortable.

I will have a look at my fittness pal ( thanks Megsdaughter and Grockle) as I need to loose half a stone and more specifically shape up. I am disapointed not to start supervised exersise with the CFS team (modified GET I think) so might start a gentle program myself. Any one know anything about Mindfulness for ME. I have been offered a course.

Good luck Solo and Fuzzpig and every one else struggling to work in the cold. I had a long trip home from work ( train chaos) on Friday and DH (with ds) met me with the car and a flask of hot tea at the station (2+ miles away- no buses running) which was lovely. As Ds school had closed early Dh had come home and had the tea ready.

Looks like a day at home in the snow for ds and I as his school is closed again. The postlady managed to deliver a parcel with winter trousers and fleece for ds and warm hats for both. Ds old winter walking trousers were exposing most of his calves!

fuzzpig Mon 21-Jan-13 13:21:34

My journey was ok in the end, feel really shakey again now though so haven't gone over to the shops as I'd planned - it's DH's birthday and I wanted to get a (gluten free) cake. I hate feeling so wobbly.

Thankfully we have a cafe in the library although it's too expensive to go every day!

Grockle Mon 21-Jan-13 20:36:58

Replied, megs.

Hope you survived Fuzz & Solo. A cafe in the library sounds amazing!

I'm miserable. DS's school called me today & wanted a meeting this afternoon. So, I had to leave work early & go & see the head. She was lovely & so I really hope she can help DS settle & enjoy school again.

DP has kept away & I've not seen him & had little contact for 5 days. DS is now missing him. I'm torn between missing him & feeling incredibly angry.

My knees have begun to ache tonight which is a sure sign that I am too tired & need to stop. But I have a 10 hour day at work tomorrow sad

On the plus side, my scales seem to think I have lost several pounds overnight grin Magso, come and join us! I don't know how my fitnesspal works & am desperately hoping that you can't see what I've eaten. Healthy diet, it aint blush

I've done mindfulness groups in the past, not specifically focused on ME but it was very helpful.

smilingthroughgrittedteeth Tue 22-Jan-13 08:27:12

Bloody hell, could things get any worse? <sob>

DP slipped over on the ice at work last night and was rushed to hospital in an ambulance, he couldnt feel his legs, still waiting for scan and x rays

magso Tue 22-Jan-13 10:02:41

Oh Smiling! Thinking of you. ((Hugs))

Grockle and Megs- thanks -my first day using myfitness and I had too many calaries at dinner! There does not seem to be a way of selecting a half portion so it may not be as bad as it looked. Also had to clear the snow from infront of the car so I could drive it so put that down as gardening as that was the nearest to digging I could find. However my pace was very slow - having to rest between each couple of spades of snow so perhaps it adds up about right. Achy arms today. House work today.

fuzzpig Tue 22-Jan-13 10:43:17

Oh no smiling, hope it's not bad news!

I'm feeling like crap today, really sore throat like I might be getting yet another chest infection sad not sure if I should go and beg the doctor for ABs again.

fuzzpig Tue 22-Jan-13 17:59:51

Mini update - phoned surgery and got a phonecall from a doctor despite the receptionist being a grumpy cow and she actually prescribed me ABs without needing to see me shock she just looked back through my notes and agreed it was necessary. DH is going to pick them up tomorrow but I'm going to still try and get to work. I only had a half day today but it was really hard. The cold really isn't helping the chest pain.

Grockle Tue 22-Jan-13 19:48:15

oh smiling, how is he now?

Hope you feel better soon, Fuzz.

Magso, it's tricky on myfitnesspal... I never know what to put for my work - it is a very physical job, lots of walking, little sitting, lots of bending down & lifting. I've put that on as slow dog walking but I'm not sure that's really correct.

magso Tue 22-Jan-13 20:27:35

How is DH Smiling.
I silpped on icy steps years ago (knocking the triangular bone above the cocyx out of line) which shocked my spinal collumn and gave me some trouble but the loss of function was temporary. Thinking of you.

Grockle thanks. My job is quite active (no lifting) but as I only work one day a week I put sedentary as I rest as much as possible when ds is at school. However I like that I can put in non exersize activities such as routine household chores I am sure we all do.

belleshell Wed 23-Jan-13 11:14:22

i put sedentary too.......... seen as thou im still in my pj...and the furthest i have walked this week is to car and back....i am on AL! well ladies tonight is gonna be fun fun fun. my dd is singing at young voices, which is fantastic, the fun fun fun not is i get to spend the evening sat with her dad and his fiance!!

smilingthroughgrittedteeth Wed 23-Jan-13 11:20:40

Fuzz glad the dr gave you ab's hope you feel better soon.

DP has a severly bruised coccyx, spine and elbow. A broken rib and possible broken wrist which didnt show on the xray so he may have to go back for another xray in a couple of weeks.

He is in so much pain he doesnt know what to do with himself.

fuzzpig Wed 23-Jan-13 13:56:05

Oh no sad sounds horrible. Hope he gets the right treatment ASAP!

I haven't got my ABs yet, DH went down there today and the pharmacy wasn't open because the pharmacist hasn't turned up!

magso Wed 23-Jan-13 15:58:25

Oh smiling! All sounds very painful - and tricky to find a comfy position with the broken rib as well. Would arnica and cool packs help with the bruising? Hope he has some decent painkillers.
Fuzzpig hope you get your ABs soon. There ought to be a duty pharmacist somewhere - even tonight.
Belles good luck with the concert and company.

fuzzpig Wed 23-Jan-13 16:39:12

Have got them now thankfully - DH went back before picking DD up from school. I now feel more fluey than anything though, shivers, aches etc. GRRRRR I hate this

Grockle Wed 23-Jan-13 20:59:01

Ugh Belle - hope your evening was ok. Lovely to see DD singing though.

Am glad you have them now Fuzz.

Iamaslummymummy Thu 24-Jan-13 13:33:48

Afternoon all. Ive been putting off adding to this thread as I think I was hoping it would go away.

Anyway its not so here I am! I have cfs, thoracic outlet syndrome, scoliosis, hypermobility and depression. I feel likethe cfs is getting worse. I seem to be sleeping more and more. I seem less able to do things now. I've been off sickfrom work since November 2010. Got the letter yesterday saying that my contract would be terminated in may and they that were staying the assessment process for early medical retirement. Feels like everything is falling apart

belleshell Thu 24-Jan-13 13:41:45

Oh mummy welcome, despite the circumstances.. We might not have the answers here but at least we kinda know how u feel.... is your job physical? its so hard working and CFS...i feel our jobs give us an identity and make us feel like we belong, but in reality working and CFS is very difficult..

glad your here, and i hope we can at least empathise x

fuzzpig Thu 24-Jan-13 14:13:33

Hello mummy, sorry you have to join us (IYSWIM) but welcome!

Interesting you mention medical retirement, I have had that mentioned to me but turns out you have to be paying into the pension fund, which I had never got round to opting in (I'd opted out when I first started as my contract was only 1 year). Not sure if I should start paying in now.

What work were you doing? Mine is fairly physical, I enjoy it but it's not right for me at the moment. I don't know why I bother going back in when so far I haven't lasted more than 10 days!

Any idea why you are getting worse ATM? (((Hug)))

Iamaslummymummy Thu 24-Jan-13 15:49:16

I work as a business analyst for a bank so not at all physical. However I have to be completely mentally alert and travel. It seems to have been getting worse gradually. I had three lots of surgery in Sept 2011, October 2011 and March 2012. Infections after the last two. The first two were major (rib removal and Kung surgery). Also ds has been dxed with asd during the time I've been off. Just too much stress all round.

Iamaslummymummy Thu 24-Jan-13 15:50:12

Thank you for the welcome btw. I seem to have forgotten the social niceties!

Iamaslummymummy Thu 24-Jan-13 15:53:03

Not being at work also makes you realise that most people are just acquaintances not actual friends which is hard to take. I'm waiting to start a pain management program which encompasses get, cbt, pain physiotherapist and pacing. An 8 week course of every Friday all day. That should start in April

magso Thu 24-Jan-13 23:09:28

Hi slummymummy, I also have a son with ASD now 13. Sounds like you have been through the mill with your health. I agree a lot of the people you speak to from day to day when at work are colleagues rather than friends and when you are ill and off work ( and too ill to get out and about) there is a void. Sounds like you have a lot of therapy lined up.

Grockle Fri 25-Jan-13 03:35:53

Welcome, slummymummy. Sorry you need to join us. I also have hypermobility & depression & am currently struggling with big emotional problems. So sorry about work. Things sound really complicated and stressful for you. Rubbish, innit?

smilingthroughgrittedteeth Fri 25-Jan-13 09:18:30

Hello slummymummy, sorry you have to join us but everyone here is lovely and have really helped me through the last few months.

fuzzpig Fri 25-Jan-13 15:29:41

Aargh feel amazingly shit today, such a drama queen lying down with hot flannels on my head etc blush NOTHING is working, if I had the energy (ha!!!) to go to a&e and beg for a fecking morphine drip I would.

DH has just run me a hot bubble bath, I have been too tired to take one for weeks, in fact I can count on one hand the amount of showers I've had since new year blush

Phoned up sick again and they are so not impressed, I know it's frustrating having someone off sick but it's not like I chose this less-than-half life is it. I think they expected me to get better after the first 'lapse' in summer, I feel disobedient for not obeying them by being better! I wish I had the guts to just go off sick longer term as I do think that's what I need, but I so want to be there that I keep putting myself through it.

DH has got through the first stage for a sales job 22hrs, for the first time when he said "if I get this job you can quit if you want" I said yes because I just can't bloody do it any more. I don't even want to bother with the PT jobs I've been looking at because what's the point I'd just be off sick from there instead and I'd piss a whole new load of people off sad

Fuck sad

Grockle Fri 25-Jan-13 18:43:12

Fuzz, do consider having some longterm sick leave. It would give you time to slow down, not be stressed and to get better. There's be less pressure on you. By going back each time while you are still not properly well, I think you're just delaying the inevitable - more time off. Don't make yourself ill & miserable for the sake of a job. I know it's easier said than done.

Good news re your DH. Hope the bath helps.

belleshell Fri 25-Jan-13 19:04:14

oh Fuzz, that feeling of guilt is awful, but you arent well...!! and like grockle said log term sick would mean you could concentrate on getting well rather than well enough to get to work.

tODAY I HAVE HAD ANOTHER TO DO WITH MY EX... My DS as got into trouble for sending taxis etc to peoples house ( school boy prank!!) but Ex as gone mad. the trouble is its more to do with his parenting, my DS is left for long periods by himself, whilst ex goes out with GF or works etc. I wouldnt say he doesnt care for him but he does neglect him in other ways. anyway after another "discussion" ( argument) he said he will be more of a dad. I dont actually believe a word he says, hence one of many reason our marriage ended..... spoke to DS tonight and his dad is going t set up a bank account for him!!!!! How the |FUCK does that solve anything!!!!! i am lost for words

fuzzpig Fri 25-Jan-13 19:25:44

Hmmm being charitable I guess he wants to teach him some responsibility? confused Although I guess it depends where the money comes from.

You are both right of course. I was thinking about what I may be discussing with the psychologist on Monday - the whole boom and bust thing. I was kidding myself that I wasn't doing that, because I'm not one to race around doing everything... but I have to admit that I am in a bad cycle. My 'boom' phases aren't particularly boomy (IYSWIM!) but I am pushing myself too much. Oh bugger.

Really looking forward to seeing the psychologist, and I hope I will get a chance to find out whether I can have my dx officially in writing now that my last bloods are clear. Dreading the journey though.

Head still awful so signing off now. We are having a slumber party - because we are all ill we've covered the living room floor in mattresses smile

smilingthroughgrittedteeth Fri 25-Jan-13 19:37:08

fuzz I've just wrote a long reply and lost it but I agree with the others, I went to work for months feeling awful, I did my best to hide it from everyone and ended up making myself so ill that I was rushed to hospital after collapsing, I was forced to take 8 weeks off sick and spent 5 weeks of that doing nothing but sleeping, I don't even remember those weeks, the remaining 3 weeks were spent doing very little but that's what my body needed, I hadn't taken a single day off sick in 4yrs and admiting that I needed to take time was the hardest thing I've ever done, I felt like I had failed but now I look back and know it was the right thing.

I went back to work slowly, doing 9hrs for the first 3 weeks then 12hrs for the next 2 now I'm at 15hrs and for now that's my limit even an hour more leaves me exhausted.

Grockle Fri 25-Jan-13 20:24:29

Belle shock poor DS. Hope you are ok.

Enjoy your slumber party, Fuzz.

I've had a busy day was proud of myself for staying up so late til I realised it was only 8pm.

Grockle Fri 25-Jan-13 20:28:37

Sorry for moaning all the time. I'm really struggling. I've not seen DP for over a week now & he's not made any contact for 24 hours sad I don't know what I did or why he won't come home. Feeling mentally shitty which is a shame because I'm not making the most of feeling physically quite well.

smilingthroughgrittedteeth Fri 25-Jan-13 21:52:52

grockle you havent done anything, from what you have said about your dp he has his own issues to deal with, please dont waste energy or spoons on blaming yourself for anything x

belle your ex sounds like dp's ex , some people miss the point of parenting completely! She brought 9yr old dss a laptop for christmas, then made lots of digs about the toys/books or cheap shit as she called it that we had brought him, in the whole week he was with us he got the laptop out once the toys and craft stuff we had brought was out constantly, some people just dont seem to understand that children need more than money and expensive stuff.

smilingthroughgrittedteeth Fri 25-Jan-13 21:54:16

Oh and grockle 8pm IS late

belleshell Sun 27-Jan-13 14:57:09

Hi All, hope your weekend as been blessed with spoon.. mine as been quite quiet but had a rare night of just me and ds which was lovely, but cost me a new coat " mum ive seen a really nice coat....." back to work tuesday, but i have actually missed it but have loved creeping back to bed this week whilst everyone else was out....

belleshell Mon 28-Jan-13 11:31:15

GGGGGRRRRRRRRRRRRRRRR!!! MY EXH is such a twat (sorry but he is) DS has a lump on his face, its nothing serious (i hope) looks like a fatty lump, but it is getting bigger and he is very conscious about it. so i text twat last night and asked for him to make an appointment, he never got back to me, so i rang and he said he would. I havent heard from him this am, so i made an appt for DS in a few weeks when exH would be home from work, i rang to let him know and he screamed at me he had made it and its this afternoon. i just asked couldnt he have let me know.... that man causes me so much stress....I so wish DS would come live in Yorkshire... he told me at the weekend that if i lived near his dad he'd live with me....

Sorry for rant,

fuzzpig Mon 28-Jan-13 13:25:37

Aargh what a pain!!!

Just popping in briefly while my 3G allows it... just had my assessment with a psychologist who specialises in treatment for CFS, at st barts. Will explain more later.

Megsdaughter Mon 28-Jan-13 14:36:37

Just a quick hello. Been really busy trying to finish a quilt for a new baby. DH being away and being snowed in.

Grockle haven't forgotten our MFP have been reading your updates and your going really well smile

Grockle Mon 28-Jan-13 20:33:12

Oh Belle sad

Thanks Meg, it says I'm eating too little now but I've lost almost half a stone in a week. I'm not hungry & am not missing out. I just need to swap my high calorie snacks (mini crunchie, crisps, cake etc blush) for more nutritious things. Are you managing ok?

Hope all's ok, fuzz.

I've got my appointment with the rheumatologist on Weds. DP always comes with me but since he's fucked off not, I'll be on my own.

I'm exhausted & am beginning to ache again. My legs feel heavy & I am a little worried I am heady for a big dip & will get really ill again.

fuzzpig Tue 29-Jan-13 07:09:10

Sorry you are in a bad way. Possibly a good thing in terms of seeing the rheumatologist? Better they see you in pain than in a good phase IYSWIM. What are you expecting to happen at the appt? I've never seen one before so don't really know what they do. I hope they are helpful anyway.

Meant to come back last night but was so exhausted. Here's what happened yesterday:

Had my first meeting with the psychologist at the CFS clinic in st barts. From what I gather he's a specialist; at least I think he only sees people from the CFS clinic rather than doing general therapy. Basically it was an assessment to see how they could help. We talked for about an hour.

He thinks CBT will definitely help me deal with loads of issues - not just the CFS itself but all the MH problems I've had, the childhood abuse etc. He said I seemed very positive about tackling the issues. I think I am - I've been ignoring everything for about 7 years (since I outgrew CAMHS and therefore stopped seeing my brilliant psychologist there) and now I feel ready to confront it all. Unfortunately it's taken a serious illness to get to that stage!

The really exciting news is, I have a place on a group therapy course - starting Friday! shock It runs for 8 weeks (2.5hr sessions) and will be about 10 people plus a psychologist and a physiotherapist. There was no pressure for me to attend (as I'd already said I do find social situations difficult) but I practically bit his arm off! I can't believe I will be meeting more people with CFS. The group covers different topics each time but basically the aim is to learn to cope with symptoms better, and generally to manage the illness and be assertive etc. It's in the mornings so will cost somewhere around £300 in transport shock but I think it'll be worth it. After the course is finished, I will then be getting some individual therapy.

Got home pretty wiped out and my chest, which had been getting better surprisingly fast, was worse again yesterday. I blame the cold weather and traffic fumes. Anyway, I'd been asked to phone work, and we decided to count yesterday as Annual Leave rather than sick leave. I felt pressured to do this though. When I first mentioned yesterday's appt I was told that if I was well enough to go by train then I was well enough to be in work sad I don't think that follows really?! If I had a broken arm I wouldn't be penalised for going to an appt, would I? And if I had a car it seems nobody would've batted an eye hmm

Anyway I then said I will be in today which I then really regretted as after being home a couple of hours the day caught up with me and I am now in a lot of pain. Half day today though so I will push through. I also need to sort out my leave for the support group appts (thankfully every other Friday is my day off anyway, although goodness knows how I'll manage with doing something quite strenuous on my day off rather than resting).

Got to go now as I'm still in my jammies on the sofa and need to leave in under half an hour blush

Hope everyone has a good day xxx

smilingthroughgrittedteeth Tue 29-Jan-13 07:54:38

fuzz glad yesterday was successful and the group therapy course sounds interesting. My mum is a bit like your work in terms of logic, she keeps asking me how I can find the energy to do things like walk the dog but can't manage to work more than 15hrs. The poor dog is lucky to get a 10min amble down the lane with me sad its hard not to take comments like that as harsh criticism, before I got ill it wouldn't have bothered me, now I see double meanings in everything people say to me, I'm paranoid that people think I'm faking!

grockle sorry your not feeling great but I agree with fuzz its a good thing that the dr will see you when your in pain rather than you feeling ok when you see him.

I am exhasted, between working and looking after DP I haven't been resting as much as I should, everywhere aches and I feel like I could sleep anywhere, I'm sure I fell asleep on the school run yesterday standing up on the playground.

CFSKate Tue 29-Jan-13 11:19:07

SirBoobAlot - yes, the ME conference tickets are not cheap, but they do them as cheap as they can. At least 6 speakers are coming from outside the UK, so I guess that puts the costs up. They do usually produce a conference DVD for about £10 if you pre-order which is very well produced and watchable.

Grockle Tue 29-Jan-13 21:20:01

I'm so glad it went well, Fuzz. Well done.

I've got no idea what will happen at my appointment tomorrow but I'm hoping it will be a proper diagnosis for something & some good advice about what I should do to manage better & maybe some better sleep & pain meds.

Hope everyone is ok

Grockle Tue 29-Jan-13 21:23:44

Smiling, I sometimes fall asleep when standing or sitting upright. Hope you can rest soon.

fuzzpig Tue 29-Jan-13 23:01:32

In bad way tonight. Can't sleep for crying sad I don't even hurt this evening really, just feel so sad and alone. Work is shit. I don't belong there anymore.

Putting a DVD on the laptop to try and distract me enough to sleep. Long day tomorrow.

Good luck at your appt grockle, will be thinking of you. x

magso Tue 29-Jan-13 23:16:13

Oh Fuzz hope you get a good sleep and feel more positive tomorrow. We are expected to use annual leave for medical appointments and treatments too so it is not just you. It's because that's how it's done in Europe I think, the exception being those that relate to pregnancy. I always find appointments exhausting too.
Hope your appointment goes well tomorrow Grockle.
My attempts to loose weight are not going well and yes it's the unhealthy snacks that let me down.

belleshell Wed 30-Jan-13 14:24:03

Hi Fuzz, you fit here with the rest of us, who from time to time wonder just where do we fit in. As for work.......there is always and answer, going to work is making you ill. However i am aware of just how important work is to us sometimes no just the obvious financial benefit, but my job is what makes me me, i love been a mum, sister daughter, partner, but work is what i do for me........ long term sick would give you the time to get strong again, but without giving up your job. Maybe 2013 is fuzz year, to get strong, the group sessions are a starting point. ((((((((((((((HUGS)))))))))))))

Grockle hope appt went well.

Sppons to the rest of you xx

fuzzpig Wed 30-Jan-13 16:09:08

Well I'm coping ok today, DH came to see me at lunch which was nice. Taking it relatively easy. I really don't want any more time off before my interview on Tuesday (for the part time job)

Grockle Wed 30-Jan-13 20:28:09

Sorry you had such a bad night, Fuzz. I agree with Belle - make this your year...your year to get better and change things. Hope you have a better night tonight. I'm glad your day was ok.

My appointment was alright. I forgot everything I wanted to say and now have a million questions. It was one of those 'we'll see you in a couple of months' appointments. But at least I have a firmer diagnosis: Mainly fibro with a bit of Lupus hmm

fuzzpig Thu 31-Jan-13 08:30:25

Eh? How can you have 'a bit' of lupus?! confused I thought you either have it or you don't!

Good news about the FM diagnosis though, is it official? Will you be able to tell your manager etc?

I am really tired today and am taking DSDs shopping after work! (Clothes for work experience in a couple of weeks - they are both doing it at my DCs' school which is really exciting!)

fuzzpig Thu 31-Jan-13 10:47:16

BTW if anyone has a kindle or kindle app there is a book out called something like 'chronic fatigue syndrome treatment guide', it is currently £1.93 on kindle so worth a look if you're interested. It looks like a recent one.

Grockle Thu 31-Jan-13 20:21:29

Well, yes, fuzz, me too! He said my blood tests were iffy & indicate mild Lupus but that my main problems are probably from Fibro.

How did shopping go? I'd love a SD to go shopping with! Thanks for the book suggestion - I might have a look.

fuzzpig Fri 01-Feb-13 06:05:24

Didn't go shopping in the end as DSD1 is ill - hopefully we will all go on Saturday. Was actually relieved as I was really worn out - I was asleep on the sofa before 8!

Woke up at about 4 this morning though, have been trying to get back to sleep but have now accepted it won't happen as I have to get up soon anyway and get ready for London <eeek>

Wondering if I'll get a seat on the train or tube...

Grockle Fri 01-Feb-13 07:41:36

Hope London is ok Fuzz. Spoons to everyone.

I told my rheumatologist that I am in bed by 7 and often asleep by 8 & he said 'Well, that's not too early.' hmm I used to put DS to bed at 7 then go and start working again until 10-11 & then read for a while. I was rarely asleep before midnight & being in bed by 11 seemed like an early night.

I think it's all relative... he asked how I was doing & I said I was having a good phase... but there was no time to explain what that means for me. I'm still in pain every day and have to pace myself. I fall asleep at work...

fuzzpig Fri 01-Feb-13 16:37:07

I wonder if the rheumatologist was just trying to reassure you, about the sleeping at 7 thing. I've found that a few times - you tell them something but when they try and make you feel better it actually makes it feel worse, because what you really need is someone to say "yes, that's not normal at all, and it's not surprising it makes you feel bad" IYSWIM? It's like validation that you are ill.

I'm on the train home now, it was really brilliant. Everyone was too nervous to speak to each other before we went in but in the break we were all chatting over tea etc, and it really didn't feel like we'd only met an hour before! I had lunch with one of the others (everyone else had to get to work etc) and we ended up chatting for ages.

In the session we were mostly getting to know each other but also talking about what makes you vulnerable to CFS; they described the bio-psycho-social approach and we were discussing which category things went in. Got some stuff to read and an activity/sleep diary to fill in over the week, as well as yet another mood/symptom questionnaire.

Feel quite refreshed and positive. Only bad thing about today is my chest, it really was getting so much better but I am now wheezing and have vile tasting crap in my throat angry. Seeing as this happened on Monday too I am pretty convinced it's the air pollution that has this effect on me. I live in a quiet culdesac of a leafy suburb, so by comparison central London is literally the Big Smoke sad

Grockle Fri 01-Feb-13 18:32:12

Yes, I think that might be it, Fuzz. I did say that I felt like it was all in my head & he asked if him sending me a letter with what we've discussed would help, so that was nice.

I'm so glad today was ok. It sounds very promising. smile

Grockle Fri 01-Feb-13 18:35:13

Ooo, in other news, I had a letter saying I will have a medical at home next week - an ATOS thing for my DLA application. I don't know what happens but I'm fairly well atm so am very worried.

smilingthroughgrittedteeth Fri 01-Feb-13 19:40:04

Glad today went well fuzz.

I've had a busy day took fil to day care center this morning then helped my friend move then picked fil up and now home curled up with dp.

Friend is staying with us for a few weeks till she finds a house to rent

Dp's back is still bad the Dr thinks he has displaced a disc so he is in agony and unable to move much.

magso Fri 01-Feb-13 20:10:54

Grockle I had/have some markers (antibodies) for Lupus too. Presumably not enough to need treating/ diagnosing. Are you getting any treatment that might help with the pain?
Fuzzpig your course sounds interesting. I am doing a course on mindfulness. I am uncertain if it will help - too early to tell yet, but the best bit is meeting others. All determined courageous people. It is for people with chronic painful conditions. I have been doing better since icreasing my salt and fluid intake so am even more suspicious of POTS. But then lots of things (madnesium, vit D etc) seem to have got me a step further so its hard to know!
Smiling is your DH going to see a specialist.

smilingthroughgrittedteeth Fri 01-Feb-13 20:28:49

magso he has been referred to physio and to the osteo department at the hospital

Solo Sat 02-Feb-13 15:53:34

Hello all. Just dropping by to say hi. Dreadful access up in Rugby, so not able to get on here. I'm exhausted and in pain and that's all I'm saying.
Hope you are all ok.xx

Grockle Sat 02-Feb-13 18:56:57

I think mindfulness is really helpful. Smiling, I don't think I could handle a friend

I'm shattered. I met a friend for coffee this morning & spent 2 hours chatting & bitching about work. It was good to vent a little!

This afternoon we took the dog for a walk. I am back to needing my stick & every step hurts but it was such a glorious day that I didn't want to miss the sunshine. When we got home, I blitzed the house & hoovered & tidied.

It is Imbolc, a festival of purification & a time to clear away any last things which may be holding us back as Spring approaches. We always do a bit of a spring clean and light some candles to honour the growing light so we can ask for blessings for the coming year and make pledges. Although things are a bit rough for us at the moment, I am looking forward to the future.

Blessings & spoons to you all

smilingthroughgrittedteeth Sat 02-Feb-13 21:32:42

grockle she's a good friend and understands that I'm ill, she has been a great support over the last year and was about to become homeless so I said she could say.

So far she's cleaned the bathroom and cooked dinner as well as taken over all tea making duties for dp

Megsdaughter Sat 02-Feb-13 21:51:04

Im shocked, after seeing the Dr last week, she said she would refer me back to the Rhuemy. usually this can take at least three months.

Got a appointment today for the 27th!

Grockle Sat 02-Feb-13 21:58:52

Good news, about the appointment.

And what a lovely houseguest. If she needs somewhere else, I have a spare room & live by the sea...

smilingthroughgrittedteeth Sun 03-Feb-13 09:34:26

grockle if I get fed up with having an extra person here it will be dp I send round to yours grin

It's a bit difficult at times because my house is tiny (very small lounge, kitchen and bathroom downstairs) so with 3 adults and a dog it's a tight squeeze but hopefully it will only be for a couple of weeks.

megsdaughter good news about the appointment, I hate all the waiting for appointments its so frustrating when all you want is to see someone who can help and get better.

solo, fuzz and everyone else I hope your having a spoon filled weekend and not in too much pain.

I hurt all over and am spending the day in bed to try and get myself fit for work tomorrow

magso Sun 03-Feb-13 10:16:13

I am lazing in bed too- just to get fit enough for dh to go to work IYKWIM!
Good your appointment has come through so promptly Megsdaughter , hope they can help. Oh good to have a helpful house guest although I agree I would find even the nicest guest difficult. I will try to be more positive about mindfulness. I really want to get on to the next stage getting help from then physios and OTs as I have got very stiff but every time I try to improve things I either get a relapse or a facet lock up. It's all so slow, and the huge waits between appointments make it all so much longer than needed. Can you tell I am getting impatient?

smilingthroughgrittedteeth Sun 03-Feb-13 10:36:17

I think we all feel the same about waiting for appointments, my endocrinologist works at my local nhs hospital and waiting times between appointments can be 4mths so I feel I'm not getting anywhere.

On the other hand my gynecologist works at a private hospital and appointments take 3-4wks so I feel I'm getting somewhere and less stressed about things.

I'm not moaning about the nhs they are overstretched and do a great job but I still find things frustrating and feel like if they were more organised I might actually get some answers

Grockle Sun 03-Feb-13 14:02:57

Waiting is a nightmare, isn't it? I always build my hopes up with each one, and spend the weeks leading up to it thinking, 'They'll give me a firm diagnosis & tell me how to get better & then it will all be ok.' And then, of course, it's very disappointing because I just get sent for more tests & am told that there is nothing they can do about night sweats, dizziness, pins & needs, numbness etc.

I'm really fretting over my atos medical too - mainly because I think they'll see that atm, I am fairly ok & not at my worst. I'm in pain but they can't see that.

CFSKate Mon 04-Feb-13 09:40:40

"Patient advocate Bob Miller, who's on the experimental drug Ampligen, has been urging FDA to approve the medication for ME by going on a hunger strike. He's been fasting since January 29th: six days"

www.cfscentral.com/2013/02/hamlet-without-hamlet.html

belleshell Mon 04-Feb-13 11:17:09

Hi all, im here just lost the link for some reason, you all have so much on fuzz im so glad you find the group thing helpful, grockle when they do the assessment just be honest, its fantastic you have an assessment i just keep getting refuse, make sure your chair and stick and any other aids are visable, also write a diary of pain, sleep what DS has done (OR ANYONE ELSE) to help, how you feel in work etc, it just helps when they are asking the questions, Hi to megs, magso, solo, smiling and everyone else. hope your spoons are been kind....

im dreading the week ahead, as much as i am feeling ok, i have 2 40TH BIRTHDAY parties this weekend. one is my best friend and one is DP so we have to go!!

today i will mostly be saving spoons

magso Mon 04-Feb-13 11:36:33

Another spoon saver here today Belles - because today(until after school) I can. I hope you enjoy the celebrations and have enough energy saved.
Grockle I hope your ATOS assessor is perceptive. What is routine for us is not normal for healthy people, so it is difficult to remember the differences let alone not play it down. Tell him/her you are in pain, and how exhausted their visit will leave you and for how long. Good luck.

chocaholic73 Mon 04-Feb-13 16:54:39

Hello All. Grockle invited me after I admitted I had lurked on and off. I am Mum carer to 1 DD aged 21 who has had severe CFS/ME for over 5 years and 1 DD aged 16 who has ASD, anxiety, Dyspraxia and also has a diagnosis of CFS/ME (although I'm not 100% convinced in her case). I really feel for you ladies because you're all looking after yourselves/children/holding down jobs and I really, really am gobsmacked at how well you all manage (I know you have no choice but it makes it very hard for you). I love the title of your thread - DD1 and I found this theory a few years ago now and it sums it up beautifully.

smilingthroughgrittedteeth Mon 04-Feb-13 18:29:16

Hi chocaholic welcome grin

I need a lecture please on pacing myself, Im at work and I've crashed, I've managed to feed the children and sat them in front of the tv but I'm so tired I can barely keep my head up, I hurt everywhere and I feel sick.

It's my own fault, here's what I've done in the past week....

Mon - worked 7.30-6.30

Tues - worked 7.30-6.30 and went to pub quiz

Wed - took fil to day center, car to garage, dp to Dr, picked fil up, did horses.

Thurs - worked 7.30-6.30

Fri - took fil to day care center, picked him up, helped friend move

Sat - went shopping, did horses, cleaned out rabbits

Sun - did horses, cleaned the bathroom, changed bedding

Mon - worked 7.30-6.30, helped in charges school this afternoon, put away Tesco delivery this morning

On top of all that looked after incapacitated dp

What was I thinking?????????

fuzzpig Mon 04-Feb-13 19:29:49

Oh smiling. Gentle telling off for you <stern face> smile not that you really need it - the pain of a crash is punishment enough isn't it sad

Welcome chocoholic smile thanks

I am on the bus home trying failing not to cry sad did 8.30-7 shift today, I really didn't feel well enough - my cough has been really bad, it's making my head hurt and making me feel sick. I don't think I slept more than 30 mins at a time last night because of it (very unusual for me).

Anyway, I didn't want yet more time off because I have my interview (for part time post at work) tomorrow and didn't want another absence fresh in their minds. Although I've missed so much lately it may not make any difference really sad

Legs are agony this evening, I would've sat down on the pavement by the bus stop if I'd had any hope of getting up again. It's just been too much today.

magso Mon 04-Feb-13 20:25:18

Fuzzpig and smiling so sorry you are both suffering. Gosh your week sounds busier than an althletes day Smiling.How is your DP doing? Also struggling today but I have not been a to work - I/m still recovering from my one short day a week last week - how pathetic is that? I get tearful when exhausted - nearly happened today - I made a mess of the shopping and H was annoyed although he is usually pretty tolerant of my forgetfulness and double purchases. Even ds (ASD so not usually perceptive of these matters) noticed I needed to sit down!

Grockle Mon 04-Feb-13 20:54:59

Welcome Chocoholic. Your poor DD's. And you sad

Fuzz, hope you have a restful evening. Hope all goes well tomorrow. You work very long hours.

My lovely DS has started saying things like,'No mummy, sit down. I'll get it for you. You're poorly' I love that he's so considerate but it makes me weep inside that at 7 that's how he has to think.

I am mourning the loss of my DP. I think I need to finally accept that he's never coming back. I've been very slow to realise & stupid in the past to let him leave repeatedly & then let him back. He was so lovely though. And such a help.

belleshell Mon 04-Feb-13 21:15:24

Hi Chocaholic, welcome its nice to have you here but under didfferent circumstance would be far better, Good luck tomorrow fuzz,

Grockle mourning a DP is hard but just think of how much u can really plan things now and not be let down, you are so lovely that when your ready im sure Mr Right will be there. and you never know that might just be a recovered DP.

Hello to everyone else...xx

chocaholic73 Tue 05-Feb-13 11:09:05

Thanks for the welcome all. Expecting a call from our local carers group for an advice call where they talk through the issues that you are going through and make suggestions of who might be able to help. Not sure they are going to come with much new ... but you never know! DD2 seems to have some sort of virus ....just to add to everything else ... she suddenly got tummy ache on Friday lunchtime ish and has hardly eaten since. She is drinking well but doesn't feel well in herself, but it is incredibly difficult to work out what is ordinary viral illness and what isn't.
Grockle do you have a real life friend you can offload too about DP? Sorry you are going through this.

buildingmycorestrength Tue 05-Feb-13 12:11:35

Hi all. Am completely out of spoons today. Can hardly get to the toilet. Have a sick son at home, but fortunately he is OK to just watch TV. Have had someone else take daughter to school and will have to arrange pickup.

Scary when it gets like this.

fuzzpig Tue 05-Feb-13 12:53:44

Woohoo I'm done. Don't think it went that well though. There are 7 people going for it and I am by no means top of the list of who 'should' get it IYSWIM (though not bottom either). So nothing to lose really.

Anyway I'm just glad I have a half day today and am off home now.

Sorry about your DP grockle. Am shocked he hasn't contacted you though... seems immature of him really. I think you'll see the positives of being let down by without him soon enough. xx

belleshell Tue 05-Feb-13 17:34:24

hI Corestrength,

wish i could send u some spoons, not that i have many left, well done fuzz, lets us know how it went, chocaholic hope DD feels better soon

x

buildingmycorestrength Tue 05-Feb-13 18:12:04

Feeling a tiny bit better now after being horizontal for about 6 hrs smile

Grockle Tue 05-Feb-13 19:23:37

You're probably right, belle. Life is always so hard.

How is everyone?

Grockle Tue 05-Feb-13 19:39:20

Oh, for some reason I didn't see posts other than Belles, sorry I missed some.

buildingmycorestrength...who are you?

Chocaholic - I do have a RL friend to chat too. I tend to keep myself to myself though & don't like sharing my problames. She's lovely though & very supportive.

buildingmycorestrength Tue 05-Feb-13 20:31:38

Hi Grockle. Didn't introduce as feeling so awful. I'm 37, with mostly great DH and two kids, 6 and 8. Have been quite ill for nearly a year now. Have consultants who have tried things which have helped, but in a bad patch just now.

Grockle Tue 05-Feb-13 20:44:46

sorry building, I didn't mean to be so rude... I presumed you were someone who'd already posted but changed your name. So sorry blush

Welcome. Sorry you are so poorly atm.

buildingmycorestrength Tue 05-Feb-13 21:20:00

Don't worry, assumed you were just being protective of your lovely helpful thread. smile

fuzzpig Tue 05-Feb-13 21:27:25

I'm glad you clarified Building - I thought maybe you'd been on the thread before but due to brain fog I'd forgotten! blush grin

Welcome to the thread. Sorry you are in a bad way though thanks

I've been trying to fill in my activity/sleep diaries but can't really remember what I've done today let alone every day since Friday!

Got my period today as well, which is annoying as day 2 is always the worst and tomorrow is my other long (8.30-7) day. Uggggh.

Off to bed now!

smilingthroughgrittedteeth Tue 05-Feb-13 23:23:47

Have had a bad day.

Somehow managed to drive home from work last night and went straight to bed, slept from 7.30 till 6.45 when I had to get up for work.

Got to work, somehow got the kids to school and then passed out on the sofa from about 9.15 till 2.50, picked them up and then got them straight into pyjamas and sat in front of tv.

Got home at 7 and went to bed, just woken up with stomach cramps and my arms and legs feel like lead, I've also got a weird pain going from my neck and across my shoulder blades, it's sharp and kind of makes me catch my breath.

fuzz good luck

buildingmycorestrength Wed 06-Feb-13 10:09:40

smiling, that sucks. I know the lead feeling. Scary, isn't it. Hope you feel better soon.

Oh, and have a spoon --()

fuzzpig Wed 06-Feb-13 10:40:16

Sorry you feel so shit smiling sad

Mini update - didn't get the job. A bit disappointed but not surprised and actually quite relieved - the job involved working alone (and it's in a high crime area) so I was quite nervous about that. At least I have a bit longer to decide what to do work-wise.

smilingthroughgrittedteeth Wed 06-Feb-13 16:53:04

Sorry you didn't get the job fuzz could you not do part time or a job share at your current work?

Have slept all day and feeling a bit better physically but mentally am frazzled and sound drunk because I'm slurring and stumbling over words and being forgetful.

fuzzpig Wed 06-Feb-13 19:26:30

Funny you should mention that idea smiling as I had an absence meeting today, I was really worried but my manager talked about reducing my hours. I'd thought this had been ruled out and I'd have to go for existing vacancies (hence applying for the job) but it seems that now I have my official dx it should be much easier. I'm being referred back to occ health so I guess I just need to see what they say first. I feel a bit more positive now though as I'd basically thought I was stuck in FT.

I've been asked to have a think about what hours I could manage etc but I'm really not sure as it's a minefield with tax credits etc, but then if I don't reduce them enough I'd still get ill a lot... I don't know!

magso Wed 06-Feb-13 20:01:17

Fuzzpig I wonder if the best way to decide what is right for you is to ( with occupationals healths support and whilst still on sick pay for the missing days) drop down to say one or two days a week. See how your body copes. If all is well for a while on that - increase. Once you start to struggle and get ill or symptoms increase you will know that is too much and you need to drop back to where you managed. This staging is commonly done for people returning after severe ill health, who are expected to return to full health. The trouble for us is that part time might be all we can forseably manage and therefore loss of salery is an issue. My work (a hospital) did this for me. After many months it became clear I could not return to my previous contracted hours and downsized ( salery as well of course). I hope one day to increase once (if) I achieve a better level of wellness. I am sorry you did not get the vacancy but maybe working part time in your present familiar library will be easier than beingalone in an unfamiliar setting. I am part of a large team and it means we cover for each other when one is ill.

Hello exhausted types.

Long whinge follows...

I don't have any of the conditions named in the thread title (as far as I know), but I do have something. I've had problems with my joints all my life and periods of ridiculous exhaustion in the past, and now. The rheumatologist (this time around) seemed to think it was ankylosing spondylitis but I think they're not so sure about this diagnosis now because all the bloods come back negative and they couldn't find any inflammation or joint damage on the imaging tests. The ridiculous amounts of yoga I have forced myself to do for the last 18 months also mean that I can now get my back to bend, which also seems to have made them question the diagnosis.

Regardless what it actually is I am in pain every day (in far too many different joints to list), have stiff joints in the morning/after sitting or lying in one position, have joints that get all red and hot (and more painful) for no apparent reason and at fairly random times, get really hot at night (to the point that DH has to retreat elsewhere to get some sleep sometimes), have itchy skin and come out in fairly random rashes, and feel utterly wiped out all the time. The feeling wiped out is absolutely the worst symptom.

I'm currently signed off work because it was all too much for me, combined with hideous side effects from the rheumy deciding that tramadol was a sensible thing to inflict on me. To be honest, it was too much for me before the drugs change. I work FT in a job that involved a lot of sitting around at a computer (which I find painful) but I can work from home 3-4 days a week. I find it very difficult to do a whole day's work though and will often have to sleep all afternoon. I also find myself utterly wiped out the day after I have to go into work. I do enjoy my job, but it's very hard to get any work done.

My doctors seem to get fixated on the pain management aspects and seem to dismiss the exhaustion. Partly I think they imagine that they'll fix the exhaustion if they can control my pain and stop me having disrupted sleep. The thing is, I can sleep all night (maybe waking up a coule of times, turning over but going back to sleep) then sleep all morning and then sleep most of the afternoon and still be utterly exhausted by 9. I also have access to less than helpful physios who mostly tell me that I need to do 4 hours of cardio exercise a week (on top of everything else, and a FT job and looking after a family). If I tried this one week, I'd be utterly ruined for the next several weeks. It's very frustrating, especially as being exhausted and in pain makes me tearful and so many of the doctors I see seem to want to tell me I'm depressed. I'm not though; fed up and exhausted, but not depressed.

magso Wed 06-Feb-13 20:03:18

Salary I mean. Spelling gone to pot again!

magso Wed 06-Feb-13 20:11:58

Hello Arbitrary and welcome! Sounds like you fit right in with us- although sorry you are ill. I think we have all had quite a lot of the don't knows from hospitals too. $ hours of cardio a week - would put me back to square one! I hope the rheumatologist comes up with something useful for you.

Thanks. Obviously I don't ^do* the 4 hours of cardio. I'd collapse in a heap, especially as she was adamant that it had to be 'proper' hardcore cardio none of your walking, household chores, gardening etc.

magso Wed 06-Feb-13 21:32:10

No I would imagine only the well and fit could!

garlicblocks Wed 06-Feb-13 23:50:30

Hello, and thank you for the thread Grockle. I've been keeping away because I'm trying different approaches to managing (haha) my recovery (hahaha) and sometimes reading other people's illness adds stress. But I'm having trouble writing my ESA, DLA and housing benefit appeals (yes, am living off loans from my mother and facing eviction, thanks DWP) plus my GP seems to think I'm a nuisance. Soooo I probably need to feel a bit less alone with this shit!

That was kind of a long-winded placemark grin

Grockle Thu 07-Feb-13 00:25:16

Hello garlic, Arbitary and building. Welcome. Sorry you have to join us but this is a lovely thread to moan and rant & seek advice. It is certainly a relief to know other people who have similar problems. Friend in RL are lovely but I am sure they get fed up of my limping & telling me I look shit (really, why is it ok to say that to someone?)

I don't do any really strenuous exercise - I play with DS, have a physical job where I am standing/ walking for 4-6 hours, and walk the dog as much as possible but that's about it. I hate going to the gym etc and would rather keep fit by doing stuff in my every day life. Plus, I'm too unfit! Cavemen didn't go to the gym, did they?

fuzzpig Thu 07-Feb-13 07:53:36

I used to really enjoy going to the gym. I was even learning to run before I got ill.

Magso unfortunately I can't try reduced hours while on sick pay, fair enough as I've already had 2 phased returns. So I do have to make a decision really. Boss did imply it was fairly flexible though; they would be covering my non-hours with relief staff rather than hiring somebody. She said if for example I started on 16 hours but then after a while wanted to try 20, I could. Thankfully she is understanding of the fact that CFS is so unpredictable so she knows why I am having trouble deciding.

magso Thu 07-Feb-13 10:59:14

Good your boss is understanding especially of the variability, Fuzzpig. Sorry had clean forgotten you had done the phased return bit. I have a similar arrangement with work - I can (once a vacancy exists) increase my hours (and pay) when I feel able. Been a bit out of sorts recently. Not sure why. Am doing the course and just going once a week to the local hospital (extra to my normal week) seems to have worn me out!! I drive but can never park near enough for my wobbly legs! Next week is busy and then it is halfterm!

fuzzpig Thu 07-Feb-13 12:17:16

Do you have a blue badge magso? (I'm not bothering as we don't drive)

magso Thu 07-Feb-13 13:41:40

No was turned down said I did not have a qualifying condition or a walking disability. I'm mostly OK on the flat. Hospital visits are a big problem for me as the hospital car par is usually full, but there are a lot of empty blue badge spaces. The worst is with my son who gets frightened because of his ASD and lierally drags his feet or refuses to budge!

I always hope it's raining when I have to visit the hospital. The car park is always full but it's opposite a park with free parking. The park car park is always full when the weather is anything other than completely hideous, but you can park there on horrible days.

I found out today that I didn't get a grant I applied for. No feedback yet, but I know what it'll say. It'll say I don't have a good enough post-phd research profile/publishing history (and I'll probably have been marked down because I didn't say I'd spend most of the 3 years on a jolly around the world under the guise of 'networking'). It's frustrating because I don't have the 'right' kind of profile because of my health but there's no way of having that taken into account. And the whole macho working 18 hour days thing in academia means that it can be hard to get anything resembling understanding from colleagues (even ones who see themselves as feminists or all about 'equalities'). It would be fine (just annoying) if I hadn't wasted 2 months (and what energy I had) working on the bloody application.

Grockle Thu 07-Feb-13 15:37:03

Good that work are being relatively flexible & supportive, Fuzz. I know it's shit having to make decisions about that.

Magso, Fibro (& I guess CFS) are on the 'decline a blue badge' list. BUT, if you appeal, they should give you an appointment with an occupational therapist who will ask lots of questions (how far you walk, if you use any aids etc) and watch how you move & then decide. Mine was lovely & told me there & then that of course I needed a blue badge & she'd be saying yes. So, it was good. When I am well, I don't use it. But when I am wobbly, hurty and really unwell, it is a blessing. I no longer have to walk across a huge car park, crying every step of the way. Also, ASD is grounds for a blue badge if it is an issue of safety. Most of my families at work have them.

Arbitrary, I sympathise. My exH is a research scientist but one who does 100+ hrs a week. He started working with high-profile people and got papers published in respected journals so is quite successful. I know how much work goes into a grant application. So sorry you got turned down. It must be a very tough job if you are not well. I know I couldn't have managed it even when I was well.

I had my ATOS thing this morning. Was ok - will write details later if anyone wants to know what happens. DP (well, exDP) came to help but took all his stuff and moved out, saying he wasn't leaving me as he handed back his key hmm which left me in floods of tears. I then went to work and passed out and it was embarrassing & horrible & has left me with a splitting headache. I feel very sick and yucky. Going to sleep for an hour before getting DS. I don't want to be ill any more. I just want a day when I am ok. I'm so very tired of hurting, not walking properly and feeling like a huge waste of space.

Sounds like an awful day grockle. My sympathies. I know exactly how you feel.

DH is also an academic. He works a lot more than me, but mostly seems to be ludicrously successful in publishing. I don't think he really understands quite how hard it is for me to get anything done, or why this is. Sometimes I feel like I lost my brain somewhere or that it's stopped working properly. It's annoying because I am really good at my job (when I can do it).

Luckily, being an academic comes with a very good pension scheme with decent provisions for ill-health retirement (not that I need this right now, and hopefully I'll never need it, but it's good to have). And my boss and the colleagues I work closely with are genuinely supportive. I actually burst into tears when my HoD told me that I should just be off as long as I need to and not feel guilty in the least.

On a more positive note, some flowers just arrived from my MIL (who is lovely) to cheer me up. smile

fuzzpig Thu 07-Feb-13 17:39:28

Sorry about the awful day grockle (BTW I just noticed that your name is now in my autocorrect dictionary grin) WTF is your (D)P playing at?! Hope you get the results you need from the assessment. I need to get round to applying myself <ulp>

Arbitrary I'm really sorry about the grant. How disappointing sad

I just got off the phone to a physio - I'm only in contact with her because of the research trial I'm in, but this scheduled phonecall was sort of a summing up and also an opportunity for me to discuss anything. Perfect timing really - we talked about reducing my hours. She reckons 24 may be too much and maybe something like 16 would be better - I need to really cut back and focus on getting better (mentally as well as physically - I have put the former off for far too long) and in that sense less is more! I need to stabilise my routine and that is impossible on FT hours. I felt guilty about not being able to do the GET trial properly but she was really nice about it and said it was just bad timing. I do want to try it once I'm on reduced hours. It's scary financially though.

belleshell Thu 07-Feb-13 18:17:05

Hi All, and welcome newbies... nice to have to have you here just a shame about the circumstance.... im sorry everyone seems to be having a shit time... id love to hear what they did Grockle at the assessment. Fuzz, my hours should now be back to 30, but i am doing everything in my power not to work 30...thankfully i am on 4 days a week (24 hours) for next few weeks as im using AL to take a day off.... as much as i am feel better than i was before xmas i am dreading 5 days, i really dont think i can do it.. still we will have to see, and if not then i need to discuss reducing my hours, which im not sure is possible, i only have 1 year left of my contract and i have so much to do in developing the service more!!!

oh well i best go do mums taxi duties, ill be back later

spoons to you all

x

belleshell Fri 08-Feb-13 04:42:48

oh ho im in trouble......wide awake and watching TV. Legs hurt, head hurts, infact it might be better to list what dosent hurt!!!

That's not good. Did you get any sleep? TV at 4am is generally awful.

Grockle Fri 08-Feb-13 09:18:04

It sounds like a great place to work Arbitrary. I'm so glad they are supportive.

Yay for being in Fuzz's autocorrect! My application for seems to have worked well - if it would help, I can let you know what I did or show you some of it or something?

Sorry you've been up all night Belle. I was too.

We've had no milk in the house for days so I went to the shop. It's a 5 min walk. I used both crutches but it hurt so much I had tears streaming down my face. I got the milk and dragged myself home & almost passed out when I fell through the front door. It took me 45 minutes.

I've gone from having a full time carer (I know I was lucky) to no help at all (& a broken heart...I know I'm being dramatic but it's really hit me hard that DP has left and I'm not coping at all well). I know some of you are lone parents... how on earth do you manage? I feel so sick. I don't know how to pick DS up from school.

fuzzpig Fri 08-Feb-13 09:40:17

(((Grockle))) that sounds so hard. I'm just wondering if you do grocery shopping online. I really couldn't manage without it. There's also a company called milk&more who are basically like a modern milkman but you don't subscribe to regular deliveries, you just order as and when for the next day. Worth a google - you need to make things as easy as possible on yourself.

Hope you got some sleep belle, I am lucky that my sleep is usually fairly consistent but now and again I have a night of insomnia. I find DVDs help, if it's something I know really well (futurama, Big Bang theory etc) I can just close my eyes and listen, which helps me relax.

I'm at Victoria about to get the tube round to st barts for the second group meeting. Only just finished my homework blush

Grockle Fri 08-Feb-13 09:49:38

I do grocery shoping online. I can't have milk&more... can't remember why but I trired to get that last year. I'll try again now - thank you for the suggestion. I think I just got used to having help & had never considered how I'd manage on my own.

Hope your meeting goes well.

We can't get milk and more either because they don't seem to cover our area (and we're not rural in the least; we live in a city). You might be able to find an independent milkman though. I think there's a 'find me a milkman' website of some sort where you can search by postcode. I might look into that myself. We've got no milk and DH was huffing and puffing about it this morning because I forgot to get some more yesterday.

fuzzpig Fri 08-Feb-13 14:30:16

We are trying to change our shopping routine to twice weekly deliveries rather than once a week (we have prepaid delivery so no worry about extra cost) - hopefully it will help us not run out of stuff towards the end of the week etc... needs planning though. I just really want to streamline my life as much as possible, because you can't waste energy on the little things like popping to the shops when you have so little in reserve!

BTW I seem to remember milk&more was a new thing when I first got it, so it may be that it was only in trial areas or something. I think you can freeze milk as well so maybe you could buy more and freeze a bit for emergencies? Or could you build the walk in to the school run so you don't have to go out twice? Once DS is older you can send him grin

Grockle I know what you mean about relying on somebody with housework etc, I do virtually nothing - I am lucky DH does it all although I feel a lot of guilt and shame (not his fault at all). Is there anyone who can step in even in a small way - doing a school run once a week, cooking you a few meals or something?

Has he said anything more about the status of your relationship now? And it's not being at all dramatic to be broken hearted, please don't minimise your feelings, they are perfectly valid. Of course it's painful! How is DS dealing with it?

Group was great, we talked about stabilising routines vs boom and bust cycles, and about sleep. Going straight home now but next week a few of us might have lunch after. We are repeating the activity recording thing so I must work harder on it this time - in particular recording specific activities at work, as it varies so much in intensity. It was embarrassing realising how little I do though. Work is so exhausting. I feel in limbo right now - I know I can stabilise my routine, and start building the other elements of life that I've lost, but I also know I don't have a hope in hell of doing that until I've got my hours sorted.

I'm really considering writing a diary, now that I'm becoming so much more aware of my thoughts and feelings and how my emotional and mental health impact so greatly on my CFS (and vice versa). My dad randomly bought me a gorgeous notebook ages ago (fabric cover with pop art on it), I think it's unruled pages so I can doodle on it too. I've been saving it for something special smile

Grockle Fri 08-Feb-13 16:06:51

I love the idea of a diary, Fuzz - the notebook sounds perfect. I'm so glad the group is helpful. I guess there's a lot of things we can do to streamline our lives but it's not always obvious when you're in the middle of it.

I used to have a prepaid delivery thing & I might do that again - could I really use it for a £10 shop or something if I ran out of milk, bread, cereal etc? That would help. Most of the time I can get to the cornershop but after my trek this morning, I know it's not always possib;e. If only DS would pay attention when crossing roads, I could send him. Won't be long I guess, then I'll complain about him being all grown up!

No idea re DP. I haven't told DS anything other than DP is poorly again so can't drive to be with us. I've literally begged DP to come over & help because I love him & miss him etc blush & he's ignored me, so I think that's a failry clear message. I don't know why I'm so distraught this time - ther previous occaions, I coped really well. Maybe it is being ill that is making me so needy. blush

Grockle Fri 08-Feb-13 16:07:48

Oh, £40 minimum shop. I'll see what milk&more can do - I called them & they said they'd sort out my account.

fuzzpig Fri 08-Feb-13 17:25:53

Yeah it's a bit annoying about the £40 minimum spend, basically though we usually spend around £80-90 a week though so we can just cut it in half.

If he's ignoring you you're better off without him really aren't you sad doesn't stop it hurting though of course. Go easy on yourself if you can xxx

Grockle Fri 08-Feb-13 18:31:01

Thanks. I know, you're right. sad

magso Fri 08-Feb-13 19:34:56

Grockle(hug) so sorry your dp has left and ofcourse you are grieving. Ds does not have a blue badge - in our area ASD only qualifies for a blue badge if child gets HRmob DLA - ds does not.
Arbitrary sorry about your funding disapointment. I had similar problems post doc and its such a let down after all the hard work. I could not do that now.

Solo Fri 08-Feb-13 21:32:04

Tired! Tired! Tired!!!

garlicblocks Fri 08-Feb-13 23:55:52

Moi aussi! I just painfully dragged myself the 4ft from table to worktop, muttering "Why doesn't anybody get what this tired means?" Then I remembered you lot wink

Grockle, I've been following your posts and am very sorry for what you're going through. I just can't handle much in the way of a reply, sorry blush
Don't plead with him to come back.
Do give yourself treats.
Un-mumsnetty xxxxx

Grockle Sat 09-Feb-13 03:32:19

Solo & garlic sad it's rubbish, isn't it. Why isn't there a word for the level of tiredness we feel? 'Tired' & 'exhausted' are used so much by everyone that they have little meaning now

smilingthroughgrittedteeth Sat 09-Feb-13 12:52:11

I do one big shop once a month, I keep longlife milk in the cupboard for when we run out of fresh milk, and try really hard not to go near a shop the rest of the month.

grockle I'm so sorry your dp has behaved so badly and that your hurt, I hope when your feeling a little less hurt and upset that you will realise the way he behaves is using to much of your energy and you will actually be stronger without him. Not that, that makes it any less painful so am throwing spoons at you for energy, hugs to make you feel better and flowers to cheer you up x

belleshell Sat 09-Feb-13 17:51:30

oh god round two of close friends 40th birthday bashes!!! i did last till 1030 last night.........didnt get up till 1030am today and went back to bed at 2 to be woken up by my dad who came to visit....tomorrow will defo be a duvet day, and maybe monday as well, i hurt today, my head is too heavy for my body, (does that make sense)..

Hope you all have some spoons left to enjoy your sat evening...

Well done. 10.30 sounds like more than late enough to me. Hope tonight goes well and that you enjoy your duvet day tomorrow. I love a good duvet day with the kids.

I usually put some milk in the freezer. And bread. We still manage to run out. We live less than 5 minutes walk from a 24 hour asda, a 24 hour garage with convenience shop and some other small corner shops and DS1 is 12 (so he can be sent for things - as long as I have some cash). The cash is usually the stumbling block; I never have any cash in my purse.

We went to a local NT place with the kids this afternoon. I'm totally wiped out from it. I can absolutely understand the head feeling too heavy for your body thing. Mine feels the same way. And the back of it feels strangely numb/sometimes a bit pins and needley. My poor neck is not happy at all.

fuzzpig Sat 09-Feb-13 19:36:45

I fell asleep before 7 yesterday blush ended up with nearly 12hrs sleep but still felt like shit today! I cried at work sad just in so much pain and had the walking through treacle feeling (although my arms were the worst). I pushed through though, had some brufen at lunch and managed to cope for the rest of the day somehow. Not moved off the sofa yet!

Poor you. It's absolutely terrible when you end up in tears at work.

DH (who keeps going on about how I we need to watch our spending at the moment) has just been to asda for some cookies and has come back with a PS3 game. Apparently he 'needed' it because I would just be going to bed really early. In better news, our local lib dems have delivered their periodical 'newsletter' which informs me that the really expensive furniture shop next to asda that I'd never even considered going in to is all set to become an M&S food. I told DH that I will be expecting much more exciting treats to be brought in when he decides that we must have some kind of dessert once they've opened that.

Grockle Sat 09-Feb-13 23:51:39

I like M&S food shop. We have one opposite Waitrose - 2 of my favourite places. Until very recently, DS(7) would sometimes request a trip to waitrose as a special treat grin

Grockle Sat 09-Feb-13 23:53:43

Fuzz, so sorry work is so hard. I'm not coping with mine either. I don't think I can face it on Monday...not after passing out on Thursday. I'm so embarrassed blush

We always have bread in the freezer but not milk. I do keep UHT in for emergencies too.

Hope Belle enjoyed the party & isn't too wiped out.

fuzzpig Sun 10-Feb-13 07:05:48

Arbitrary, DH and I often give in to bargain DVDs/games etc, so now we have a personal budget for it instead! It means we can spend it (£20pcm each) however we want without needing to justify it to each other, although sometimes we pool it if it's something we both want, and save it if there's something big we want. Works really well for us - we even record it all in a little cash book blush

fuzzpig Sun 10-Feb-13 07:06:57

In a way maybe it was good you passed out at work, however embarrassing, as at least it shows them how serious it is?

Grockle Sun 10-Feb-13 10:08:08

Maybe, fuzz. I don't know. I'm so tired of all this. I can't really remember what life was like when I was well...I want to be able to get up & take DS somewhere without worrying or hurting. I like your DVD budget idea. And the cash book smile

Well I don't mind him buying a videogame at all. I wouldn't have minded if it had been a full price one either. We can afford for him to buy one whenever he likes.

The thing that annoyed me was that he's been whinging all month about money to the extent that last weekend he followed me round the supermarket complaining about whatever I put in the trolley and he got really annoyed when I insisted on buying some smoothie despite his protestations. And this week he's been going on about how I need to make the food I bought last week stretch as far as possible because we need to save money. Yet, it's ok for him to just buy a videogame because he wants it (on top of the new shoes, new shirt and gym membership he's got for himself this month, and the haircut he's decided he needs - and the significant sum we paid out to tradesmen for work done in January too).

We either have money or we don't (and we do bloody have money). I am not going to put unnecessary energy into careful meal planning and food budgeting when DH seems to think saving money only applies to me.

garlicblocks Sun 10-Feb-13 12:05:24

Grockle, I agree with Fuzz. When you put everything into performing well at work, nobody thinks "Look how courageous she is!" Instead, they think you're taking the piss with your reasonable adjustments. I fell foul of this; the consequences were very bad indeed for my health (and income). Even if you think in negative terms like 'playing the disability card' and 'milking it' - do it! Pushing yourself beyond your safe limits is not being kind to yourself or at all clever.

Arbitrary - don't let him get away with all this inequality! He's manipulating the finances (or trying to, heh.) Might it be time for a rethink on how you split the money?

Grockle Sun 10-Feb-13 12:45:38

Arbitrary, that would bother me a lot. Like you said, either you have money or you don't but the rules need to be the same for each of you. Food is a fairly basic necessity so if there's scrimping to be done, I would have thought that luxuries like games etc would be the first to be hit. Maybe you should make him live on beans and toast for a week grin

Garlic, you are right... and I need to prioritise DS & my health over my job. I just hate having so much time off- they are quick to complain about that and make me jump through hoops with HR but rarely notice that I am there when I am really not well enough. People always ask how I am, saying I don't look well (thanks!) & I always say that I'm ok or fine. They don't want to hear a list of ailments and problems, do they?

garlicblocks Sun 10-Feb-13 13:23:43

I have a tiny confession, Grockle wink

I am not a crier or a fainter. I've done both, but have to be practically at death's door. Stoicism can be inconvenient.

One time, I went into work with an opportunistic mouth infection. Was painful; face swollen and grey. Two people said not looking well. Boss heard, gave hard stare, ignored. Already on adjustments AND warnings, couldn't send self home without risking job. Self-referral to company doc disallowed as had regular checkups. I went into the ladies' and lay on the floor until someone found me!!

Well ... they make the rules, you have to play them ...

Grockle Sun 10-Feb-13 14:02:26

grin

Well, needs must, garlic. It's terrible that it comes to that... no-one should have to fake something. I often feel that if I faked had an obvious illness, it would be so much easier.

Grockle Sun 10-Feb-13 16:04:14

How do you decide when enough is enough & you really shouldn't/ can't go to work?

My legs hurt SO much & I really can't face a day with lots of people, lots of walking around, lots of questions about how I am, why I am at work, what happened etc. I don't want a day where I have to be totally aware & on the ball & where I shuffle around like the miserable cow that I am. But I can't decide if I am just being lame or if I actually need time off. If I can go every day this week, that'll be a whole half-term without any sick days.

garlicblocks Sun 10-Feb-13 16:25:25

Oh, Grockle sad

Get up tomorrow morning and do a spoon inventory while you're in the bathroom. If you can't work you can't work.

Sometimes we have to let life go where it takes us ... and that can be very far from what we imagined for ourselves. My therapy with CFS team was all about adjustment; it was nasty medicine but (I didn't want to admit) necessary. Where do you & H stand on provisional plans for if it all gets worse? I'm sorry to be asking this. All my financial planning rested on the assumption I'd get better in a year, two years tops - my doctors had led me to believe it angry In the long run, that assumption cost me literally everything.

Looking at the immediate term, have you been in touch with Shopmobility about renting an electric wheelchair? Costs a fortune round here, but I know in some regions they're readily available. Alongside the energy that could save you, there's the political advantage that you'll "look disabled" at work.

Grockle Sun 10-Feb-13 18:27:58

Spoon inventory in the morning is a good plan. I really have so little desire to go to work. It's a hard job at the best of times & when I'm physically & mentally not great, it makes it hard. I have to be very quick on my feet and really aware, so brain fog and pain make it hard. An electric wheelchair would be amazing. I might look into that over half-term. I couldn't use it at work, but I can use my stick. I just don't want to because I'm too embarrassed blush

I'm so sorry you've lost so much. My finances are ok... not linked to DP at all so if we decide we're over then I'll be ok. As long as I continue to work. I have no idea what happens if that's no longer an option. I daren't think about it.

belleshell Mon 11-Feb-13 08:38:08

Grockle i think enough is enough, you have been struggling for such a long time, and with the DP situation, i really think you need to give your self a break the saying that i use at times like this is "stop the bus i want to get off".I really think you need to look after you now!!! and once you are well then you will feel so much better. Go see the GP tell them your crashing and you know from experience it takes a month at the least to recharge.. this gives you a month without worrying... You are such a lovely lady and life is just been shit.................. now is GROCKLE time!

Grockle Mon 11-Feb-13 08:45:33

I didn't go in blush I'm so tired of pretending to be ok when I feel like shit. I need to go in tomorrow, weds & Thurs & then I'm off for half term. I will reasses things then & if I'm really no better I will beg to be signed off for a bit. Life is hard, isn't it?

I stayed home partly because the house is such a tip & I haven't ironed my uniform...I thought I'd try & do it today but I'm already back in bed & feeling sleepy.

I hate feeling this guilty - like I'm skiving. HTF do I clean my house?

How're you doing, Belle?

Don't clean the house! Honestly, no one is going to die of a little bit of clutter and a few more days without hoovering, etc.

Sleep instead and take care of yourself.

My mum and stepdad have just left (they visited yesterday and stayed the night). I feel quite bad because I had to let them sleep on the couches in the living room. We'd been out at the Chinese New Year celebrations in town all day (while DH 'went to work' because he didn't want to spend time with my family). He came home at Ds2's bedtime and as soon as he was in bed announced that he was 'going to the pub with friends'. We have a blow up mattress and stuff for guests but I couldn't find it and didn't have the energy to go searching the garage for it, so I had to issue my mum and stepdad with blankets and leave them to it (while I went to bed).

I have no idea what to do with him. He seems to be getting ever more selfish (and he was never exactly selfless). Although, given the problems you're having with your DP, grockle, DH seems perfectly reasonable.

I'm going to the GP's this afternoon to see if they'll change my medication and get them to sign more off for at least another week. I'm not getting up til this afternoon though because I am very sore and very tired. Annoyingly, getting up might help with the soreness but I'll just be more exhausted (and that lowers may pain threshold). No win situation.

garlicblocks Mon 11-Feb-13 10:08:41

WELL DONE, GROCKLE! smile

Please listen to Belle & Arbitrary.

Arbitrary ... take your own advice wink

Landlord coming for house check this afternoon and am under eviction notice. Have turned heating up in hopes of cleaning the worst of the dirt without crippling self - wish me luck.

smilingthroughgrittedteeth Mon 11-Feb-13 10:15:16

grockle don't worry about cleaning the house, just rest, curl up and watch daytime tv, nap when you need to and order takeaway for tea.

I'm freezing, I've got the heating turned up to 30 but I just can't warm up.

I've got an appointment on Friday with the endocrinologist hopefully he will have some answers for me but I won't hold my breathe

Yes. My life would be much better if I'd just live it as I'd advise others to live their own!

Today I am going to mess about online, sleep, possibly watch a film on sky anytime (if I can find anything worth watching), have a bath and visit the GP.

I have no intention of cleaning the house, however. Or anything else housework shaped. It's perfectly fine in here. Quite clean and tidy actually. I could even have people round (although id have to get dressed for that). I'd just like DH to pull his head out of his arse and look around himself occasionally. Last night he seemed annoyed at me that I didn't ask him if I could come to the pub with him. Because going out, sitting in a pub and talking to a bunch of people I don't know sounds like such fun after a day (well afternoon really) out with the kids.

belleshell Mon 11-Feb-13 11:04:06

Do you knowhowmany spoonsyou have???i used tohave 12 but after mylast crash imdown to 11...
Gettin up and getting DD to breakfast club 1 spoon.
Getting towork and walking to office 1 spoon
Work4 spoons
coming home and getting DD 2 spoons
Making tea 1 spoon
Getting ready for next day (packups, homework soreting DD) 1 point

1 pt left.....

i use that to do shopping ( which i actually enjoy)
Driving DD to manchester to meet her dad 2 points but its usually fri night so i come home and do diddly squat
Taking DD to guides etc
Tidying round ( bare minumum ie taking washing up stairs on way up anyway etc)

Grockle dont waste any spoons today on cleaning, if everything needs to be tidy like me then short sharp shocks on loo breaks etc

Arbituary, your DH sounds alot like my eDH, i could cope with his selfish ways when i wasnt ill, but as i got progressivley worse i couldnt, in the end i left ( i dont advice that) and as much as been a single parent with ME was tough i knew exactly what i had to do without ever been let down

I now have an amazing DP who gets it, and helps, and if i need to rest lets me get on with it, no expectations, no stress, no pressure...

Work all your spoons out it really helps!

Grockle Mon 11-Feb-13 11:42:52

i've been asleep again. I wish I felt better when I woke up though - I just feel groggy & yuck.

Arbitrary - do you have an electric blanket? I have one that is on pretty much every day & it really helps with the achey pains. I'd love a heated throw but they are about £100 so not an option. And yes, take your own advice grin

Sorry you've got so much to do garlic - I hated renting because of constantly having house checks and leases being ended just as soon as we'd got settled. I'm not good with uncertainty.

I have to get up to iron or neither of us will have uniform for work/ school. I hate ironing - I do it sitting down but it makes my arm hurt so much.

I don't think I have any spoons today. Maybe a couple. I think I'll get up, do the ironing with TV on downstairs then have a hot bath. Then back to bed. I'm feeling so unsettled atm and a future as a lone parent with fibro & lupus seems very daunting & not very enticing. If I wasn't depressed before, I think it's fair to say that I am now.

Grockle Mon 11-Feb-13 11:43:33

Thank you all for being so lovely and supportive. I'm so grateful to you...it makes such a difference knowing that someone, somewhere will understand.

smilingthroughgrittedteeth Mon 11-Feb-13 11:54:25

Getting up and ready for work 1spoon
Driving to work 1spoon
Getting kids ready and to school 1 spoon
Putting away Tesco delivery 1 spoon
Making and eating lunch 1 spoon
Helping at school 2 spoons
Getting kids home and doing homework etc 1 spoon
Cooking tea 1 spoon
Driving home 1 spoon
Saying hello to dp and dog, eating tea and climbing the stairs to bed 1 spoon

Counting out my spoons gives me 11 too, that's what I can manage on, I don't have a 12th one in reserve anymore and I can't carry spoons over to the next day like I used to be able to, even after a day off I'm
Completely exhausted.

The scary thing is I wouldn't consider myself to be having a relapse right now, I'm actually having a good for me few weeks sad

I think I'm spectacularly bad at counting spoons. I'm doing ok and suddenly I seem to have none left.

How many I need depends on what I'm doing. If I work at home I need:
1 spoon for getting up and ready
Up to 6 spoons for doing actual work (my brain seems to just shut down often and I become incapable of coherent thought after a while though or I just end up falling asleep)
2 spoons for the exercise I have to do (3 if it involves getting to an exercise class)
1 or 2 spoons for making dinner (which I often can't eat anyway at the moment as I feel a bit sick)
1 spoon for getting tidied up after dinner
1 spoon for getting the kids to bed
1 spoon for helping with homework
An extra spoon if I have to pick DS1 up from scouts (usually because DH acts like it would be unreasonable to let my nearly 13 year old do the c.10 minute walk home at 8.30 through a very safe and well light part of the city)
1 or 2 spoons for interacting with DH/watching TV, etc.
1 spoon for getting ready for bed

If I have to go into work, the number of spoons required massively increases. My work day is much longer (I have to teach in the evenings, so sometimes I don't finish until 8.30), I have to teach, squeeze in as many meetings as possible with people and generally interact with people all day, and I have a 2 hours each way commute (plus a bit of waiting around and walking between places) which requires many spoons, especially if the weather is bad or the trains are late. I usually have to borrow these spoons from the next few days. It was worse when I had to go into work for two consecutive days every week, but now I would only have to go in once every week (but there are always other meetings/events/etc that I have to go to).

This is mostly why I'm off work at the moment. I could probably manage to do some work if I never had to go in to work (or deal with students, who require so much of my energy) but not going in is not an option. We can't move either because the kids are settled here (we've had to move around a lot and I couldn't force yet another school move on DS1, particularly not one that involved changing school system again), DH's job is here (although he's always complaining because he works at a new university and periodically talks about applying for jobs at the other end of the country) and property prices in the city where I work are ludicrous. Then again, if we did move, I'd be expected to go not work all the time and interact with people/go to meetings/all the other bits of work that really exhaust me.

smilingthroughgrittedteeth Mon 11-Feb-13 13:02:30

I am so lucky with work, my bosses are very understanding and as long as the children are happy, dropped off and picked up from school on time and fed they generally let me take things at my own pace, some days I manage to tidy up, make beds etc other days I drop the children off and sleep.

In some ways the timing of me getting ill was perfect as my youngest charge started school so I have been able to still work whereas if he was still home all day I couldn't have coped. Next week is the first time I have had to work a half term since becoming ill and I'm dreading it, the last few I've only had to work mornings as grandma has covered the afternoon's but she's on holiday.

I didn't really have any notice of getting ill I was a bit tired for a few months then suddenly I collapsed and couldn't get out of bed, I had 8 weeks off -- not ideal for a nanny to be off for that long-- when I was
Ready to go back my bosses took al so that I could return gradually I did 1 morning the first week then 2 mornings the second then 1 and a half days the third week which we stayed at for about a month, we finally had to agree that Im nowhere near ready to do my normal 4 days so my boss arranged to work 3 days a week and a day working at home so I could stay at 3 days for the foreseeable future we have to reassess it in may so she can speak to her bosses again but she has never complained or made me feel like I'm not pulling my weight.

I work 7.30-6.30 and even half an hour more is too much.

belleshell Mon 11-Feb-13 13:21:59

Im not working today so spoons are spent slightly different, the 4 work spoons have been spent on batch cooking, shep pie etc. we usually have a ready meal once a week. crap i know but it just gives me a break from thinking about whats for tea.....well after the horse meat saga ( im so fussy with meat) i have cooked my own instead, plus im on use up, i cant believe i dont get paid for 2 weeks, im skint, so im eating the freezer down!!.. sorry back to the tale, i have walked the dog 2 spoon, one cos i needed milk two because the poor thing was fair asking for a walk...now i am sat on settee, hot water bottle and blanket, and neededing a rest...

work out your spoons properly, honest if i leart one thing from the CFS group it was that, and i know 11 is my limit...i use them all every day and i cant carry them over, this is why i am so crap at socialising anymore, and if its after 7pm pffftttt not a chance, cos i have used all them spoons on something else.......

so my survival guide to get me through the party weekend was sleep as long as possible that way then i wont use spoons.......... but i was stillk tucked up by 11pm both nights, (late i know but for a past party goer i was usually just getting going at 11pm.....

Grockle Mon 11-Feb-13 13:46:46

When I count spoons, I use mine for much smaller activities when I am really poorly:
getting out of bed = 1 spoon
walking/ crawling to the bathroom = 1 spoon
Climbing into the bat = 1 etc

When I am better I suppose each activity takes fewer spoons. So ironing today took 1, taking DS to the childminder was another.

And crying seems to use a lot... I don't know what's wrong with me - I just can't stop. Maybe my weight loss is through tears.

The snow looks really pretty.

fuzzpig Mon 11-Feb-13 13:53:12

I've not really counted my spoons yet. It's a good idea though. I was thinking of printing out the spoon theory and getting copies for everyone in my group (wasn't sure if the leaders might be a bit hmm though!)

I don't know how to count my spoons because it varies by the day - not just how many spoons I start off with, but how many spoons a certain thing takes IYSWIM? If I'm ok, I can get showered and dressed without even realising it, but on a bad day it takes a lot of work and would therefore be a spoon or two. If that makes sense. Maybe I'm overthinking it blush

I'm glad you're off today grockle. I'm sure they will understand as you collapsed recently! I really wanted to be off and in fact I nearly fell over while serving a customer blush - just got all dizzy, but I think it was low blood sugar as I feel a little better having had lunch. In terms of deciding whether I should be off - apart from the two separate months I've had off, where I had relapses following chest infections, I basically wait until I get a 'real' illness. So, a virus, gastro etc. I get ill a lot, my immune system is shit. I wish I didn't do it like that though - I want to be brave enough to say "my CFS symptoms are bad today". TBH I really wish I'd stayed off since last summer because now people expect me to be able to work all the time.

My DSDs are staying which is really lovely - they are doing their work experience at DCs' school/nursery! It is going to be a tough week though as our tiny 2 bed house is bursting at the seams and I don't get to flake out quite so much.

5 more hours at work to go <wail> sad

Grockle Mon 11-Feb-13 14:08:25

Fuzz, I am envious of your house, crammed full of DC. I love having everybody here but it is hard when it's a squeeze & you have to keep going and going.

Hope the rest of your day passes quickly.

garlicblocks Mon 11-Feb-13 14:13:56

I only get 1 to 4 spoons a day. Sometimes none angry sad Have been sleeping 14 hours a day for the past few days, trying to build up extra for today, but I've already used 2 - showered and did some work (and some MNing) - and am now going to have to magic another from somewhere, to be used excusing myself for the filthy house! I need to get in a calm zone and stay in it.

Grockle, I don't know how you do it. I'm a bit worried for you; so glad you stayed home today.

Lots of your posts have filled me with awe ... you do all THAT???!!! But comparison is unhelpful, so I'll just be impressed in a detached, Zenny sort of way wink

Thingiebob Mon 11-Feb-13 14:57:36

Can I join the thread? I know all about spoon theory. I don't have the illness listed in your thread title but I have Sarcoidosis. My consultant thinks I have had it for a very long time but it was only diagnosed back in 2006.

I am currently pregnant so that actually helps reduce my symptoms but I still get aches and pains and get totally wiped out. I have a toddler as well. Me and DH manage quite well until I have a massive flare up and then I feel terribly guilty that my DD is not getting the attention she deserves and that Mummy is lying on the bed offering to do 'quiet' activities with her like puzzles or computer games. It takes meds to get it under control and then I am able to look after her properly and go out to the park with her etc.

belleshell Mon 11-Feb-13 15:03:12

Fuzz my spoons alter a bit too, if i have pain or my lead suit on everyhting uses double spoons, but as im ok atm i have all 11 spoons, the spoon i lost after my last crash was used to work a longer work day IYSWIM, but now im left with 11 i have to work less hours but more days, oh the joy of pacing.........i do have to say i havent yet managed the extra day yet, i use every excuse in the book, atm i am using AL to make my working week 4 days not 5, but that all ends soon, im dreading 5 days, on my day off i use those sppons to do bits around the house...

Grockle, even if you were well, a break up would be very emotional, and use up alot of reserve, please dont be hard on yourself, i wish i was closer just to give you a proper hug, and a good talking to.....

you needtime off, proper time off where you dont feel guilty for been off, are young careres doing anything in half term that D could go to...

your body isnt going to cope much longer let alone your psychi... and then what will happen, who will look after D and the dog, when u CANT!!

please dont think im been harsh i am very concerned..

(((((((((((((((((((((((((((((XXXXXXXXXXXXXXXXXXXX))))))))))))))))))))))))))))))

fuzzpig Mon 11-Feb-13 16:20:11

Welcome thingiebob thanks pull up a comfy chair! I don't think anyone here is really hung up on exactly what illness everyone has, since we all share a lot of symptoms and struggles.

Am on my afternoon break now, 2.5hrs left after that, and a horrible journey home as I have to wait ages for the bus. Thankfully I'm on a half day tomorrow, but I do get jealous of my colleagues who often do something nice on their mornings/afternoons off when I have to spend mine just recovering sad angry

Grockle Mon 11-Feb-13 16:34:04

Hi thingie, so sorry you have to be here but welcome. Congrats on being pregnant - I'm glad it helps your symptoms!

I don't know how I do it either...I'm running on empty & have been for a while. I'm not usually one to sit around doing nothing or to ask for help so I've been trying to get by the only way I know how.

All I've managed today is a phone call, a bath and a small pile of ironing (emergency) and now some pancakes but DS made & ate those with little help. I don't want to work tomorrow because it is so full on. If I had an office job where I didn't have to talk much, I'd be ok but I just don't want to go.

No young carers at half-term for DS. We're going to London with my mum and I'm dreading it. 3 nights away...I don't want to go. And she'll ask how DP is & I really can't bare to talk about it to anyone yet.

Thank you for being lovely.

fuzzpig Mon 11-Feb-13 19:20:10

Aww grockle, I don't know how you do it either, your job is so intense! I actually really wanted to be a teacher, was thinking of doing a PGCE after graduating (graduating? Ha sad) but I know it will just be wrong for me. Can't think about the future now really - we have to get through the now!

I manage at work by taking it slower, because my job allows for it and my manager did say I should. I was always the one getting things done super fast (though properly) and asking What's Next? But now I'm pacing myself and letting myself take longer especially if it's a task where I'm seated. I hate that I have to do that.

Will you be in central London? I'm going through Victoria on Fridays for 6 more weeks. I really love London but there's no way I could live there, it's too crowded, fast and trafficky! I'm quite pleased that as I have to go in peak time anyway (£36 for a travel card!) I can go very early to allow myself plenty of time, and have a rest at the station before getting the tube. It's quite surreal watching all the commuters rush past.

Grockle Mon 11-Feb-13 20:41:48

I manage because I have to, I suppose. My job is different to mainstream teaching because the needs of the kids are so different. So, if it's a really bad day, I can let them play with the toys a bit longer (because their goals will be to use small world toys appropriately or something). My team are supportive (1 also has fibro so off a lot too) & management are quite supportive too. It's just that I have to be aware all the time or I get bitten or lose a chunk of hair and if a child runs, I have to run after them, which I'm not good at atm. Funny, I always wanted to work in a library but I bet it's not the calm peaceful job I envisage.

We will be in centrral London but Sun - Weds so we'll miss you. Shame, we could have had a coffee or something. I love not being a commuter & watching them rush past while I take life a bit slower.

I was going to do a PGCE (in early years teaching) but decided to do a PhD instead. I would really enjoy teaching reception but I don't think I'd cope very well with it. I struggle enough with working in a university where no one expects me to squat down and be on my feet all day every day. Teaching is tough!

I saw the GP this afternoon. I've got another 2 weeks off work and more painkillers (this time acupan). I know have 4 different classes of painkillers that I can take everyday. The theory is that I might tolerate this better than tramadol and it will mean I won't need to take it anymore or at least only have to take it when things are dire. Here's hoping. Googling tells me that it often turns your urine pink, so that would be fun as a side effect.

The GP doesn't really have any advice really about the exhaustion though. I always end up in tears in the GP office (something about having to list all my problems and ask for sick lines just seems to set me off, and now I start welling up in the waiting room purely because I don't want to cry once I get there and then there are lots of tears). As a result of this, my GP is itching to diagnose me with depression (I think because he can do something to help that more than anythng else). I really don't think I am depressed though. I'm just exhausted and in pain.

I dragged myself to my yoga class tonight where I was utterly crap at everything. I've got no strength and everything is painful. The little snooze at relaxation time was nice though.

Grockle Mon 11-Feb-13 22:13:47

Arbitrary, my GP was adamant that I had depression. I knew that I didn't. It took a referral to a psychiatrist to get the right diagnosis so was actually really helpful in the end. I could just have done without the months and months of trying various ADs & them not ever helping, despite having been a godsend when I was depressed in the past.

Luckily he doesn't seem to want to push it on me. He knows that i am in lots of pain and I'm already under rheumatologist care. I was taking amitrylptiline for pain relief for months but it did little to nothing so my rheumy took me off it (and decided on the tramadol that floored me recently), so the GP is aware that this didn't do anything much for my mood.

It would help if I'd stop crying every time I see the GP! It's now got to the point where I know it's going to happen but I can't stop it. So I sit there wiping tears away with a tissue and explaining that I am not actually upset about anything, I just get teary when I'm tired and in pain (like a toddler!). I can absolutely understand why irrational crying rings the depression alarm bells for the GP, but I am pretty sure that I'm not depressed. If I woke up tomorrow with no pain and the levels of energy I used to take for granted, I'd be completely fine.

garlicblocks Mon 11-Feb-13 23:28:46

Weird - I don't cry and I am depressed! Have completely given up on trying to figure out the depression/CFs <-> egg/chicken conundrum and, given the resounding lack of knowledge about ME/CFS/etc, reckon it might not matter that much. I was sent for diagnosis by a psychiatrist, too, Grockle. Apparently it's still the most route of referral - which goes to prove the only members of the medical profession who don't think it's all in our heads are the psychiatrists! confused and hmm

Last autumn I told my GP "never mind what it is, let's address the worst of the symptoms". This has resulted in a flurry of referrals, which is nice and helpful, but to my mind proves they had me down as a hopeless whiner, all in her head angry I recently realised they haven't even tested for things like MS or various family cancers, and have only done the superficial tests for diabetes and thyroid. I'm really crap at being 'entitled' on a good day; I don't have those any more so finding the energy to insist on increased medical effort is mostly beyond me!

I'm feeling very GRRR about politics (today we lost the right to a fair & open trial) and my continued ishoos with the DWP and council. I actually think I have good reason to be depressed sad

So, have just dumped it all on you lovely women and am sure you could all do without other people's moaning blush
Sorry! thanks thanks thanks thanks thanks thanks

Grockle Mon 11-Feb-13 23:44:46

Your GP sounds nice, Arb.

Interesting garlic! I was made to feel like a hypochondriac and that I was imagining all the pain. I spent a lot of time questionning myself. It was such a relief when my psych actually listened & was sensible and supportive. Fighting for tests & stuff is a nightmare when you feel so unwell.

So sorry you have so much going on. Money problems are rubbish & you really don't need the stress of everything that you are dealing with on top of not feeling well. Feel free to moan on here, that's what the thread is for. And goodness knows I moan a lot grin

I was wondering what meds do you all take? And what works for you?

I take Tramadol which I don't think helps. Maybe a little but I'm still in pain. And I take Amitriptyline at night to help me fall asleep. It works for that but I still wake up a million times.

garlicblocks Mon 11-Feb-13 23:58:49

Thank you, Grockle smile You don't moan enough imo!!! Self-compassion, v. important!

I have a good tolerance of pain so am only using OTC stuffs. Despite knowing what's happening these days, I'm fairly poor at managing my energies. I think I'm doing okay-ish, then suddenly start being unable to stand up vertically, hurting like fuck. No change since my so-called "well" years in the beginning, then, except that it now takes a few hours instead of days. Hrmph! I'm on a very high dose of Venlafaxine, which has been shown to be analgesic (another thing my GP didn't know). I've an affinity for opiates blush so would rather sacrifice time to sleeping than get prescription pain meds ... or would I? ... [devil] [devil] !

It is quite funny that psychiatrists are the ones that take the physical symptoms of ME/CFS most seriously. Or it would be if it didn't make the whole diagnosis and treatment process so much more difficult.

I've got: naproxen, paracetamol, tramadol and now acupan.

The naproxen helps with the stiffness mostly but doesn't do much pain wise. And the paracetamol isn't hugely effective (but is useful for taking between doses of anything else).

I hate the tramadol. I don't find it enormously effective for pain. I think it actually causes me neck pain. I do find that it makes me feel generally bad and destroys my apetite (I have lost loads of weight since being prescribed it), so I try to avoid taking it unless I'm in agony. I didn't take any tonight though (took the acupan instead) but I've now woken up and can't get back to sleep. I don't generally suffer from insomnia (I get woken up by pain but can usually get back to sleep within a reasonable time frame, once I find a comfortable enough position to lie in). An unwelcome development, hopefully not something that'll happen again.

I took amitriptyline for about 6 months. Initially it helped to make me sleepy but stopped doing that even with increasing the dose. My GP tried to take me up to 75mg but the dry mouth was just too much to cope with, so the rheumy decided not to bother with it any more.

I think it's much easier when your doctors recognise that there is pain. All the doctors I saw as a teenager could never figure out what was wrong with me (partly because I wasn't able to describe the symptoms in a way that made sense to them and partly because spondyloarthritis presents differently in children, with knees pain rather than back pain).

This time around the rheumatologist was pretty certain it was arthritis and proceeded from there. It took a long time (and much nagging from DH who visits the GP for anything and everything) for me to go back to my GP about the pain because of my experience as a teenager.

I'd've just believed anyone that decided it was all in my head (because the experience of lots of investigation and no diagnosis really does make you feel like a fraud). However, having had problems as a teenager meant I got a rheumatology referral straight away.

smilingthroughgrittedteeth Tue 12-Feb-13 08:26:23

My GP is amazing and is convinced its an endocrine issue unfortunately the endocrinologist doesn't agree so GP keeps sending me back and endocrinologist keeps trying to discharge me.

My gynecologist is convinced it's endometriosis and I also think it's some kind if gynea issue.

I don't seem to suffer with the same level of pain as most if you, the pain is only when I've pushed myself to much and am
really really exhausted, on a daily basis I just ache. When the pain is bad I take diclofenac.

I cry a lot too, I get tired and weepy and burst into tears at the smallest thing, I never used to cry.

The endocrinologist tried to diagnose me with depression but fortunately my gp agreed with me that I'm not I'm just tired, frustrated and in pain, why do so many drs instantly assume your depressed?

Grockle Tue 12-Feb-13 11:24:45

Morning all. I'm not in work, again! I feel so tired & woozy & kind of dizzy. Pain wise, I'm a bit better so have done some tidying & feel a bit better about the state of the house. I could do with someone hoovering for me. I don't really have many close friends here so I find it hard to ask anyone for help.

If you have any history of depression, all medics seem to attribute everything to that. And if you haven't had it in the past, I think it's easier to say it's probably depression than actually think about what else it could be. I don't know, I'm not a dr so I shouldn't really judge but when I collapsed last year and was in A&E, they were concerned and doing all sorts of things until they read my notes...then they sent the duty psych down to talk to me. I didn't collapse because I was depressed hmm

I hate the dry mouth with amitriptyline... I never used to cry either.

Hope everyone has a spoon filled day.

Having a shocking day here. DH came home after dropping the kids off to tell me he wants to split up. I'm devastated and everything is a mess (horribly complex logistics). I'm so glad I don't have to go to work for at least 2 weeks.

Grockle Tue 12-Feb-13 12:15:46

Oh, arbitrary, I'm so sorry. You know I'm going through similar so I sympathise. If I can do anything at all, please let me know. I'm sure you're in shock right now. Did he explain why?

garlicblocks Tue 12-Feb-13 12:18:38

Arbitrary, I'm so sorry. Start a relationships thread. Go to your GP for more time off (they routinely sign people off for relationship breakdown). Make sure you eat and rest. Have a hug from me ((( thanks )))

smilingthroughgrittedteeth Tue 12-Feb-13 13:14:48

Arbitrary I'm sorry, do you have anyone in
rl to talk to and help you?

Big hugs from need too x

fuzzpig Tue 12-Feb-13 13:15:23

Oh no arbitrary sad I'm really sorry. Sending you spoons xxx

buildingmycorestrength Tue 12-Feb-13 13:49:52

Arbitrary, that is awful. Awful. Big hugs. I feel so much for you.

Just wanted to say that I have a history of mental health issues and I have found it very helpful to be able to say to doctors, 'No, it isn't in my head because I have been there and dealt with that, and spent at least four months since developing these symptoms wondering if it was psychological and using my very helpful CBT techniques, etc etc.' Although, actually, not one doctor has suggested it is depression or otherwise in my head. I live in a fairly enlightened area, I think.

Also having a bad day for personal but not as bad as your, Arbitrary. Really, really horrible.

fuzzpig Tue 12-Feb-13 14:24:25

It's really a lottery with doctors, IME. I was SO lucky with mine, he asked about my very sketchy history and basically trusted me when I said "this is different". In fact (and I've said all this before I think so forgive me for repeating blush) I'm pretty certain that's why I got referred to St Barts instead of my more local specialist clinic. There are a few different sets of diagnostic criteria for CFS, and one (I believe it's the Oxford but I may be wrong) does not allow diagnosis if the patient has had a previous major episode of depression shock so I wonder if my doctor knew my local clinic used this, and deliberately sent me somewhere else so I wouldn't be fobbed off. It is pretty disgusting IMO that some people will be told they can't have CFS if they've had major depression in the past - especially given it's now understood that mental health issues, and poor stress response etc, make you more vulnerable to CFS!

belleshell Tue 12-Feb-13 14:49:31

Arbitrary,im so sorry (((((HUGS))))) mens timing is shit isnt it.

Hi all as for the depression thing, i too have been depressed ( Im not depressed now) but it as been banded about very frequently in my illness, recently i was having CBT counselling and was told week on week my depression score where high......time and time again i tried to explain i wasant depressed but the fatigue stops me from looking forward to things, (mainly because im too frigging tired, or in pain and dread been out socially and having to make even more excuses to come home!!!) in the end i ditched the counselling it was more work than it was worth, Nevertheless, some AD do have nerve pain relief as a bi product, i take duloxetine and forgot one day last week, my legs took the flack and stopped working properly i was in agony for the whole day.

the trick with pain relief is to take it regularly,because if you take it as and when it takes longer be effective if you take it regular it doesnt dip into the pain level, so is more effective...( WISH I COULD DRAW YOU A PICTURE, THATS WHAT I DO IN WORK TO TRY EXPLAIN THINGS) sorry didnt mean to shout.....

im buggered today, not sure why but my ears feel like they are touching my shoulders im so tense!!

Thanks all. I'm doing ok, considering. In these circumstances I think crying all day is the appropriate response.

It mostly seems to be a case of DH doesn't love me, and probably never has. I think he is depressed, but he also does not want to be with me. I know he really means it because he isn't putting up a fight about custody of DS2. And he knows that I have to move hundreds of miles away with the kids (so that I can have a proper support structure around me, and actually get to work without a ridiculous commute). He must really, really not want to put up with me if he's willing to live hours from DS2.

His timing is beyond dire. He could easily have decided this while I was we'll enough or before we bought a house (and spent lots of time and money making it lovely - I thought this was going to be the house my kids grew up in and where I grew old). All those hopes and dreams...

I feel awful for the kids. DS1 in particular has been moved around so many times. This was supposed to be the last move, and his final school. But, we can't stay here (I would if I could get to work; I can easily afford the mortgage on my own). Poor DS1 has to move school systems (again), which will be particularly horrific and I need to restart the OP referral process for him once we move. DS2 was supposed to be starting school here in September (August baby). But now I'll need to find a nursery place for him and he won't start school until August 2014 in Scotland. It's more expense that I don't need and he'll be very disappointed about having to stay at nursery. I have to move by August too. I cannot have DS2 start reception down here and then have to go back to nursery. He'd be devastated.

I have no idea what DH is going to do. He doesn't want to stay here on his own. There are several jobs he can apply for elsewhere, but that'll just take him even further away from DH.

I don't have anyone down here to talk to. We've had to move so often that I haven't been able to make any proper friends, certainly not the kind you sob your heart out to because your world is falling apart. More the take your preschoolers to soft play together type of friends. I don't want to talk to my mum either (she's difficult).

I think I will start a relationships thread, once I've gotten up the courage too. Thanks for listening and sympathising.

belleshell Tue 12-Feb-13 15:39:08

well in RL you may not have anyone physically about but here in MN world you have friends and we have poured our hearts out about alsorts in the past.... dont be alone, alot of us have been in this situation ( i moved 100 miles away from exH 18 months ago, and left my 13 year old DS with his dad, because he didnt want to change school or leave friends...i was devastated, i still am, but i have poured my heart out on here and had nothing but supporrt)

Just do 1 day at a time.... tomorrow is a new day, with a new challenge, im so sorry the timing is shit.....

Wow, that was brave and selfless of you belle. It must have been so hard.

DS1 will probably be looking forward to moving despite everything because it'd be going 'home' (where I grew up, where he was born and lived for 5 years, where his dad lives, where his grandparents live, where he still has the accent despite now being 12). Moving schools will be tough but he gets some pay off.

Ds2 is only 3 and he'll be moving away from his dad, so it'll be far less positive for him. He'll benefit from seeing my mum more often and adapt (because that's what 3 year olds do). I couldn't leave him. He's so small and I need to look after him.

DH did try to suggest that he had Ds2 and I took Ds1 but he's agreed that isn't fair on me. This is not my decision and I have to move or give up my job (which would mean I couldn't stay in this house anyway). It's impossible to commute and be a single parent. So DH has conceded that I will have both children.

Grockle Tue 12-Feb-13 16:37:08

Arbitrary, I will never understand men who don't want to fight for their children. DS's dad wanted sole custody of him & fought & fought me to get it... until he had a job offer in California. Then suddenly he didn't want DS any more angry

Like you, I've moved so much that I don't have any close friends here, just lots of aquaintances and I never want to tell my family until I have accepted what is happening. That's where MN is good. Belle's right, it's a one day at a time thing. The DC will be ok and you will too.

What a nightmare about school/ nursery for poor DS2, it would be ridiculous for him to have to move from reception - nursery.

I don't think it's that DH doesn't want custody of DS2. I think it's more a case of him being realistic about the situation and how completely unfair it would be if he did. This way the two boys stay together (and they adore each other) and I am a good mother.

It might be different if it hadn't been entirely his decision to split up. But he can't unilaterally shatter my world and then take my son away (and it would be a case of that, as I'd hardy ever get to see him). He's got plenty of faults but he isn't a total arsehole.

He is pretty devastated about me having sole custody of DS2. But it's the right thing to do for everyone (where there is no possibility of shared residency due to distance).

Grockle Tue 12-Feb-13 16:55:54

Good, arbiitrary. At least DH is realistic.

Fuzz, you sound like you've been really lucky to have such a great GP. I'm amazed that once you've had depression, you are not allowed to have any other physical illness. And we're bound to score highly on a depression scale because the physical illness makes it so hard to exist.

icepole Tue 12-Feb-13 17:12:49

I posted this else where and was directed here, hoping for some advice.

I have been off since oct with this. Occupational health advised me that once I was up at home I could start a slow phased return to work. Work said they would give me a maximum of 4 weeks.

I have been up since Thursday and my line runs out this week. I feel a lot better than I did but get waves of feeling bad during the day, they pass if I rest.

When I feel good I feel ready to get back to work. I am just a bit apprehensive. Just wanted to hear from others. I don't want to set myself back but would like to go back. I am a teacher, no place to hide if in suddenly feel unwell.

fuzzpig Tue 12-Feb-13 17:43:43

Welcome icepole! It's lovely (IYSWIM) having lots of new people.

Do you think 4 weeks will be enough for your phased return? It doesn't seem like much if you've not even been up at home for a while. I was given 6 weeks, although I actually only did 4 and then had annual leave anyway (DH had surgery). I then had reduced hours again (but due to the surgery) and got sick again - I was off another month and then had another phased return but they only gave me 2 weeks that time. It felt like a punishment for 'failing' the first time! I have just managed 2 weeks of FT which is the most I've done since July. I really wish I'd taken a long time off rather than just a month at a time and then bits and pieces.

Re: the depression thing, I am definitely depressed anyway as I still have a lot of issues from my past/social anxiety etc that I've never dealt with, but I do feel lucky that the specialists I'm seeing are looking at the full picture - although they are primarily 'interested' in the CFS, they want to help me deal with the rest as well as they see it as linked.

MN is so great. I feel really well armed if that makes sense, I have learnt so much about my illness thanks to people here - the specialists seem surprised I knew so much. I really wish we could all meet, I am crap at making friends and don't have anyone really close here despite having been here nearly 5 years. OTOH at least we all understand each other and that includes not being able to travel etc - much easier than explaining/excusing ourselves to existing friends who might not 'get it'.

Grockle Tue 12-Feb-13 17:53:09

Welcome icepole. My work only do a 4 week phased return too - am a teacher also. What do you teach? The LA say that if you're not able to build up and be back at work on normal hours after 4 weeks, then you're not ready to be there at all. hmm When I went back last time, I did a couple of mornings one week, then all mornings then 2 full days & 2 half days before going back to my usual 4 full days. I lasted about 7 weeks and am now off again but trying to go in tomorrow - don't know why, I have my lead suit on. I think that's what made me pass out last week...if I'd told my boss that I keeled over because my lead suit was too heavy, they'd probably have brought in the men in white coats.

This is such a wonderful group - it's gone far beyond my original moany OP all those months ago.

I'm waiting for DS's childminder to drop him home (she'd fed him too!) so we can go to bed. He loves snuggling in my bed & having a story which suits me perfectly!

belleshell Tue 12-Feb-13 18:06:56

Arbiturary, my exH was and still IS selfish, i too have now moved home, but i stayed in the village he lived with all his family and friends around(non of which spoke to me and i became very isolated in a village i had lived for 15 years) for a year after we split, the reason being he said i couldnt bring the kids home with me, andhe would fight me every step of the way and use my illness against me.... It was my psychologist that made me realise ( and in a way gave me the permission i so needed to come home) that my exH had no hold over me and infact if i had stayed there i would lose my kids anyway because my illness would get worse and worse due to my internal conflict, and desperate need to be around my own family and friends. My exh knew that i would never drag the kids through court. So i got very brave, and told him i was coming home and the kids wouldnt be dragged through court because we would ask them where they wanted to live, not who they wanted to live with. Hence my beloved DS chose to stay with his friends and at his new high school, my DD choose to come with me, and she as settled really well. Its hard really really hard, the kids are split (might be a blessing in disguise) and i miss DS daily, but we do have a fab relationship, i am still very involved in his life and treasure every minute i spend with him..

So stay brave,make you happy not your DH, your right your youngest DS is far too young not to be with you, thats where i went wrong my exH promised me we would eventually move closer to my family, but he told me he never had any intention of doing so when we split.....TWAT !

belleshell Tue 12-Feb-13 18:11:18

Whoops sorry Icepack for being rude, welcome......

I am still on phased return i went back to work in November!!!! im back to 24 hours and soon to achieve the 30 hours im contracted... im a nurse so no hiding place for me either... work with occupational health do it slowly, and best wishes in your returning....

Alot of us on here love our jobs but struggle daily to do them.. but the support here is fantastic, stick with us...

Welcome ice pole. Sorry your work are being inflexible about a phased return to work.

Belle: that was incredibly mature and reasonable of you. It is proof that you really do put your children first.

I ate a couple of pancakes earlier and now I feel really queasy. I don't understand what DH is up to at all though. He keeps coming up and asking me for a hug, he offered to have sex with me to 'make me feel better' hmm, and he stood in the doorway while I was getting changed to have a bath with DS2 until I told him to go away and shut the door. He doesn't get to dump me and have any access to my body. It's all or nothing. Then, after we'd put DS2 to bed he asked me to come and talk to him in the kitchen where he asked me if I'd be willing to sell this house and get another one in this city. That's just cruel, considering that he's already made it clear that he doesn't love me (apparently I fill him with bitterness). He was just sad that his decision to split up means he won't get to see DS2 every day. He'd better go to work tomorrow and leave me alone in the house.

MIL texted me to ask how it went at the GP's. I didn't know what to reply. Turns out that DH has already told her (obviously a version of the tale where it sounds like he's a poor ickle hard done by soul). I have no idea how he can be at the telling people in RL stage of this. I guess it's because he's not broken hearted.

I'm off to start a thread in relationships where I'm sure everyone will get annoyed on my behalf. I think that might help me a bit.

Grockle Tue 12-Feb-13 20:01:30

I am in awe of Belle... what a terrible position to be put in. I know it's really hard now but I am sure it will be worth it... and the fact that your relationship with DS is so good is testament to how amazing you are. I live in fear of DS announcing that he wants to live with his Dad. I don't know what I'd do.

AU, your DH sounds like he doesn't know what to do. I laughed at the offer of sex to make you feel better, sorry! Only a man would think of that. He's obviously had time to think about all this... it's not a big shock for him because he's been mulling it over and talking with his mother already. But for you, it's very raw. Be clear about your boundaries.

Oh I was clear about my boundaries. I told him uncategorically that we will never have sex again. He did apologise for it, but really it's not difficult to anticipate that an attempt to have sex would go down badly.

The thing about DS2 is that I think in his planning he seriously thought I'd say, 'oh yes, you should definitely have him and I'll just move away' or something. He also told me that he thought I'd be really happy when he told me. I think his head is still up his arse.

belleshell Tue 12-Feb-13 20:46:34

oh please dont be in awe, i feel like the worst mother in the world, but my kids are my world..... and i was a child from a broken home, and it ruined my life, and ability to trust men ( or maybe thats just cos exH was a TWAT!!! whoops there is that word again) i promised id not ruin my kids life in the same way, so maybe im just ruining it in a very different way..........

AU,if i had my time again id just pack my backs asap and go... let DH sort the house out, its his choice, i tried to be the reasonable one......i became the mug and in turn missed the chance to bring both my kids home....if i had brought DS home when we split up, as hard as it would have been he'd be here with me now...

ICEPOLE im so sorry for 1. not welcoming you along initially and the 2. calling you ice pack......CFS brain and PMT i fear....

No. It's a very good mother that can do what their kids want even when it's not what they want. Truly.

I'm not going to do anything too quickly though. I am taking both kids with me no matter what. It's better if I let DS1 finish out the school year here and then start school up in Scotland in August (although he'll get very little in the way of a holiday). I don't want to make it harder on him than necessary. And it gives me time to (a) turn down DS2's school place, which will mean he'll have no school to start and (b) organise a nursery etc up there. It's also better to sell the house and then move. I know both areas well enough to buy straight away and it'll be better for the kids to have a more permanent home. I should be able to afford to do so.

Grockle Tue 12-Feb-13 21:00:10

My parents were divorced too & I promised myself that I'd never do that to DS. So, when he was 4 months old, I became a lone parent hmm

Perhaps 'in awe' wasn't the right term... I know you didn't chose that but I think a lot of people wouldn't have given DS the choice... and you did. Even though it was not what you wanted. That's not an easy thing to do & I'm sure many people would not be so selfless as you.

My parents divorced (very messily) too. And I became a line parent when DS1 was less than 6 weeks old. It was all very amicable though, and always has been. I really feel like I've let the kids down in all this.

icepole Tue 12-Feb-13 22:34:11

Thanks all for the welcome.

Belle I quite enjoyed ice pack, made me laugh.

Occupational health wrote a really supportive report saying that I should be phased back over 6-8 weeks with timetable modification until the summer. School say this is just a guideline and they can only give me 4 weeks. I am not at all confident I can be ready to be full time in 4 weeks, when I feel ok it feels possible, when I feel unwell it does not.

I did too much today, now feel grim. I feel under pressure to go back. I feel that people see me and I am ok. The problem is I don't stay ok all of the time. If I don't do much I actually can feel pretty good and then I feel bad for being off.

icepole Tue 12-Feb-13 22:37:40

Grockle I teach drama, so very practical subject.

Does anyone else have on going pain in their throat/glands?

magso Tue 12-Feb-13 23:07:04

Yes Icepole I have a nearly constant sore throat and swollen glands and sinuses. I have not found any magic cure as yet! With respect to going back to work, I would delay until you feel more confident that you could cope with a whole week at work. I was advised to wait till I felt well enough to run for a bus. I thought that was rather over the top so went back to work when I was very far from being able to run and have never got back to managing my previous part time hours (or being able to run for a bus fo that matter!). I did not realise I had CFS at the time.
I had my BP measured (by ENT) both laying down then suddenly standing, and it dropped dramatically. So I have OI for sure. I suspect I have had OI for years and its just more obvious now due to CFS. I had lots of other balance related tests ( just as well I had not had breakfast) and found I could not keep my balance walking heel to toe with closed eyes at all - any one know what that means. I have to go for an MRI and am still waiting to see cardiology about tachicardia ( I think PoTS is more about Tachicardia than falling BP). Any one else have balance difficulties?
Arbitrary and Grockle I am so sorry. CFS is enough to deal with.

icepole Wed 13-Feb-13 07:26:04

Thanks Magso, yes it is my glands that are sore. I could probably run for a bus but I wouldn't feel well afterwards! There is a long weekend here, will wait till afterwards before I decide. I actually don't think I am ready but I feel everyone thinks I should go back.

fuzzpig Wed 13-Feb-13 08:02:23

Hey magso, welcome to the OI club grin FWIW, my specialist did mention both the tachycardia and the low BP when he told me I had POTS, so I assumed both are equally important. The sudden standing was the only test I did for it though. I've actually been wondering about asking to be referred to a specialist for the POTS as well (I know of a good one as I had a PM from a MNer) - it may be related to the CFS, but it is an illness in its own right. Some days it's far worse than the CFS symptoms.

It's funny I was just thinking about running for the bus yesterday, I wouldn't do it now. On my long work days, there is a bus at 7.07 that I can occasionally get - I did on Monday as we got out early but I had to walk really fast and it hurt. But if I miss it I don't get home til nearly 8 and that's bad too of course. It confirmed though that I'm doing the right thing by pacing my journey through Victoria on hospital days - it's just not worth rushing and I get to visit the Krispy Kreme stall grin

Just wanted to say WRT feeling like you've failed by being single parents... NO!!! Honestly, being in an unhealthy, even toxic relationship, is much much worse on the DCs in the long run.

fuzzpig Wed 13-Feb-13 08:18:52

TBH icepole if you go back too soon and then go off sick again - which you will, if this is happening too soon - then it will show them that they are rushing you. It is abysmal that your employers aren't taking occ health reccomendations seriously. angry My manager actually said the opposite - that if she felt they were too harsh (eg not agreeing that I should reduce my hours) she could still decide to be more lenient. Maybe that's just as bad as she would still be ignoring OH but at least it understands how bad my illness is.

I don't get sore throats all the time but I am very prone to tonsillitis and chest infections. Unfortunately it seems like my 3yo DS is going the same way already sad

Ice pole: it sounds horribly difficult. I can absolutely sympathise with the problem of people seeing you and thinking you're ok, but they don't see you when you're not. This is the really big problem with our kind of condition. People see that you can (sometimes) go to the supermarket, take the kids to the park, commute to work and teach brilliantly, but they don't see all the pain killers and effort that it took to do it (or how much of a happy face you had to paint on) and they certainly don't see you when you collapse at home and can't do anything for hours/days afterwards (depending on how bad it is/what you've done).

It would be much better if the school could phase you in and then let you come bak properly after the holidays. My line manager seems to think this could be something that might work for me. She said it was ok for me to have this semester off and come back for a fresh start in the next academic year.

Fizz pig: you are absolutely right. It is not a failure. I absolutely know it's not. It just feels like one. But I'll get over that.

Grockle Wed 13-Feb-13 11:13:32

Icepole, occ health (atos) said the same to me & then the local authority said the same as your school.

I have frequent sore throats - about 10 per year but no problems with glands, I dont think.

I'm at home again! I'm kind of proud of myself for actually saying I am too sick to work. I will go in tomorrow but the thought of it is making me will. My lead suit is heavier than ever and I'm so bloody tired.

What is the different between CFS & fibro? I'm just wondering how the decide you have one not the other.

icepole Wed 13-Feb-13 11:30:16

The pain in my throat is my main symptom, or my first one anyway. I get pain in my glands and then I feel nauseous and tired. I have seen a throat specialist but they couldn't see anything.

Everyone around me is fed up. I could probably manage the first week, it's after that I am worried about.

icepole Wed 13-Feb-13 11:55:28

Grockle how did you find the four week return? Did it seem fast to you? I have some difficult classes, terrified of being unwell and having to deal with them.

Grockle Wed 13-Feb-13 12:13:17

4 week return was ok for me at the time... I felt that the only way to see what I could do was to try it. I could have spent 8 weeks building up to it to find that I couldn't manage but I wanted to do it quickly so that I knew one way or another. And I did manage for a while but my quality of life is crap... we get up, I drop DS at childminder's, go to work., pick DS up, take him to his activity, feed him then we both go to bed. I don't plan properly or anything - I have told work that but they just care if I'm in school or not.

It helps that I have a small class (so less paperwork) and a lot of good TAs to help me during the day.

I'm back to being in a lot of pain, exhaustion & confusion... I know I pushed myself too far and my body couldn't handle it and I'm now paying for it. I want to work tomorrow so that
a) people see me & realise that I look shit & am not skiving
b) I have done a day before half-term which hopefully will mean I won't get too used to being at home (where I function much better)
c) to see if I can actually manage
d) so that senior management see that I am trying very hard to be at work

fuzzpig Wed 13-Feb-13 13:59:55

WRT the difference between CFS and FM - I am certainly no expert but as I understand it a lot of people think they are actually the same, but with emphasis on slightly different symptoms. With CFS the main symptom is fatigue (some of the diagnostic criteria I mentioned earlier also say you can't be diagnosed with CFS if you say the worst symptom is pain) but with FM the main one is pain. It's a certain type of tissue (wiki will explain it better than me!) and you also have sensitivity in various places on the body.

I have a diagnosis of 'arthralgia' as well as CFS and POTS so I guess the specialist felt the huge amount of joint pain I have is actually not entirely due to CFS. It's not FM either (although I have wondered if I have that as well due to other pain) as the pain in FM is not in the joints. Or something. confused

My GP tends to call what I have 'polyarthralgia' when he can't think of anything better. The consultant's letters have a diagnosis of undifferentiated spondyloarthritis but say that it's early days in the investigation. I think that's because undifferentiated spondyloarthritis is what they call ankylosing spondylitis until it meets certain criteria (they need evidence of inflammation and possibly joint damage on imaging tests). I doubt they'll find this evidence. I've had joint problems since I was about 13, so there'd probably be damage or inflammation to see by now). Of course, I can find plenty of evidence of inflammation in the form of pain and red hot joints. It doesn't seem to count though. There'd be more treatment options (not a cure, but more than just symptom/pain management) if they found the right kind of evidence. But I doubt they ever will.

I don't carry the gene markers that are usually associated with AS either (although, as with all these things, some people just don't and many of those with the marker don't have the condition). At least that means that it's far less likely that the boys will develop the condition. Because of the generic link, it does tend to run in families (and is more common in men, which means there of loads of advice on maintaining a sex life with the condition, written from the point of view of men with the condition. Obviously this shows how to have sex in such a way as to utterly cripple women with the condition).

Grockle Wed 13-Feb-13 20:09:40

I've had various things on my sick notes...arthralgia, fibromyalgia etc. They don't really cover the pain (joint, muscle) & fatigue. I slept this afternoon and thankfully set an alarm to fetch DS from school. I neatened myself up before I left the house & was met by another mum who said, 'oh, you look awful, so tired...' Um, thanks.

Dreading work tomorrow.

Does anyone get really cold extremities? My hands and feet and nose are always freezing, even when bundled up. My fingers go white & hurt even if I've only been outside for a few minutes - I find feeding the chickens really difficult or anything that involves using my fingers in the cold. Ouch.

fuzzpig Wed 13-Feb-13 20:47:24

I find my hands fingers get incredibly cold sometimes and it really makes the pain in my knuckles very bad. I've even been known to wear fingerless gloves at work.

My sick notes have usually had the 'real' illness (IYSWIM) so chest infection, gastro etc, although the times when I've been off longer I've also had 'post viral fatigue' until I got my official dx.

I'm lucky to have a couple of colleagues with whom I can be completely honest - the rest are very nice but I tend to gloss over things a bit (or else I say too much and then feel uncomfortable). Anyway, one of my closest work friends said yesterday that I am very brave. I told her today she was wrong... if I was truly brave I would just phone in sick and get my doctor to sign me off for a month. Because that is what I need, but I'm too scared to stand up for myself. That's why I wait for a 'real' illness so I feel justified in being off sad

Grockle Wed 13-Feb-13 20:57:47

Oh fuzz, it's horrible, isn't it? Last year, when I was really ill & had a bit of a breakdown, I was desperately trying to think of ways to have a 'proper illness' DP refused to run me over with the car & I so I was always thinking 'if I fell in front of that bus, I'd get hurt & could legitimately have a break'

It's never good to have to wait for a more 'legitimate' reason.

icepole Wed 13-Feb-13 21:12:21

How horrible to have to think like that. I kept wishing they would find something concrete.

I don't really get my work. OH said I would need timetable modification until the summer but they expect me to be sorted in 4 weeks confused

fuzzpig Wed 13-Feb-13 21:23:07

Thankfully (!) I never have to wait long as my immune system is so useless right now that I pick up every bloody thing going. But then perhaps if I had some proper time off to really recover I wouldn't get so many bugs.

It is bad that I do it like this though because now people expect me to be ok if I 'just' have CFS and not another temporary illness as well. But I just don't have the strength to fight it right now.

Icepole TBH if they make you fit with their ridiculous time frame then they will regret it as you are bound to need more time off sick. A shame it has to come to that, but maybe it will make them realise how serious the illness is.

fuzzpig Wed 13-Feb-13 21:28:20

Also I am really struggling with mornings just recently. I have had trouble getting up for ages but I keep getting all shaky mid morning. I can almost set my watch by it! But then after a break I feel better and get through the rest of the day... until of course the next day when I feel like shit again. It's weird.

Grockle: the white painful fingers in the cold is probably Raynaud's disease. It's commonly associated with lupus.

My fingers get very cold and painful sometimes, but not in the same way. They also swell up and get very red, hot, painful and itchy if I get too hot or due to temperature changes. My feet/toes do it too. It's definitely not chilblains (I've had chilblains before and this is very different). I have no idea what it is but it's not pleasant.

I also get ludicrously itchy skin from time to time, for no apparent reason. I end up with loads of scabby scratch marks all over my back and sometimes on my face from scratching in my sleep. And my cheeks get very red and hot for no reason sometimes (the skin goes a bit scaly too). It doesn't seem to be related to anything I eat or put on my face. It just happens. Neither the scabs nor the red cheeks are enormously attractive.

I also get the bumps on my scalp and the back of my head that you mentioned down thread, grockle. And I tend to scratch and pick at the bumps too. I think they're probably spots. I wish I would grow out of that.

magso Wed 13-Feb-13 23:22:14

Fuzzpig I also am more likely to get wobbly in the morning. I do wonder if the OI is worse then -perhaps BP varies with the circadian rhythm I don't know.

fuzzpig Thu 14-Feb-13 06:51:21

Magso I have to get out of bed really slowly, I think because I've been lying down for several hours it's more of a shock to the body. I've read that it's good to sleep at an angle, eg putting some breeze blocks under the head end of the bed.

I think I may have actually had POTS for most of my life because I've always had problems with standing/dizziness/racing heart etc.

smilingthroughgrittedteeth Thu 14-Feb-13 08:30:50

I get really cold hands and feet, lately the whole of me is cold I just can't seem to get warm.

I struggle to get out of bed in the morning and this morning I cried the whole time I was getting up and dressed it was such hard work, I think I must have used most of my spoons just doing that. DP kept telling me to phone in sick but I can't it leaves my bosses without childcare.

My throat hurts all the time but I don't have painful glands.

I seem to have permanently blocked sinuses.

I get the shakey sick feeling at 3pm every day, doesn't matter if I've eaten/slept/drank I still get it, it passes if I lie down for awhile but if I'm working its right over school pickup time so not possible to just rest and ride it out.

I have also considered throwing myself down the stairs or in front of a bus, when I was very unwell last year I remember begging DP to push me down the stairs so that I could have a real reason to feel so awful.

DP has been signed off work for another 4 weeks with his back and starts physio on the 8th of march.

My poor friend who's staying with us has been brilliant and really helped. Im so glad she's around to help but Im looking forward to having my house to myself again, with her staying and DP being home all the time I'm starting to feel a bit suffocated.

magso Thu 14-Feb-13 08:35:33

Yes I too have a long history of keeling over since adolescence, it never occurred to me it was not normal. Before illness it was running upstairs on a cold morning or getting up in night for the loo that knocked me down, now ( running up stairs is not even possible) I get up slowly. The tachycardia is only since I was ill. I get a low around mid afternoon also when my legs get extra wobbly and I just want to lie down. Just in time for after school -poor ds! I wonder if the PoTS makes us more prone to CFS?

magso Thu 14-Feb-13 08:43:41

Cross posted smiling! Sorry you are feeling so low today. Interesting you too get low at 3pm too. Hope the physio helps your dh. It is awful to feel you have to get up even when exhausted. I,ve got yet another sinus infection, but since my surgery at least the gunk can drain -oh joy!

fuzzpig Thu 14-Feb-13 10:55:23

Yes I get really bad when getting up in the night too. Thankfully the amitriptyline knocks me out enough that I now only get up to pee once or twice a night rather than several times (which is how I've been since first pregnancy in 2007!). I always check on my DCs before going to the loo and if I get up too fast, by the time I've got to their room it is spinning around me.

magso Thu 14-Feb-13 11:09:38

I wonder why sleeping with a slightly raised top end helps. Could it be it forces the body to see this as listing flat so increases blood volume slightly?

fuzzpig Thu 14-Feb-13 13:11:15

I assumed maybe it's because it's less of a shock to the body but I am crap at science so I don't really know. I was also told (by a lovely MNer who sent me a PM with info about her DD's treatment regime for POTS) about drinking a sports drink (I have lucozade sport) for all the electrolyte replacement etc. I also try and eat more salt and have more water (to increase blood volume) - that was recommended by my CFS specialist.

Grockle Thu 14-Feb-13 20:25:53

I went to work today...I was told frequently that I look ill & should be at home. I fell asleep this afternoon at the computer. blush

Is there such thing as TMI on this thread? If so, you might not want to read the rest of my post grin

Following from what Fuzz was saying... I pee all night! Well, I used to - I must've been up 3-4 times some nights & 20+ times during the day. I don't do that any more and can go all day without a wee... I don't know what the reason for my overactive bladder but I'm glad it's settled. I wouldn't have minded but as soon as I'd leave the toilet, I'd be bursting to go again & would have to rush to find the next one. Days out were not much fun.

I have my period again & it's made me wonder if this awful week is in part due to PMT. It's ridiculously heavy. I think this is where using a mooncup is handy because I know exactly how heavy the flow is. I don't know why all of a sudden it is so heavy, it's never been like this til my last couple of periods.

garlicblocks Thu 14-Feb-13 20:57:37

Hmm ... even more TMI. Read your 'up in the night' posts with interest, as I am fucking incontinent when tired. Up in the night often means not making it to the loo, which is always fun when you're trying to get more sleep. I've noticed it's worse around my period, but so is everything. I've become a heavy consumer of old-lady pads, to my despair, and even they aren't enough last thing at night sad

There, I've confessed.

Grockle, what age are you? Change in periods could be perimenopause?

Grockle Thu 14-Feb-13 21:04:13

I'm 35, garlic. So fairly young for perimenopause, I think but certainly not impossibe. I'm not bothered if I am, I just want this to stop. It's carnage. I've never had blood dripping out of me before. Gross. It means I am reluctant to stray far from home in case of an emergency. Unfortunately, this coincides with our trip to London.

I have also not made it to the loo once or twice.

I have a mirena coil. No periods at all. Do you think that might help you?

garlicblocks Thu 14-Feb-13 21:52:25

Oh, I do sympathise. I bled like a battlefield every sodding month after coming off the pill - still do, but at least I'm missing the odd one now! You can get muscle relaxants and anti-clotting agents, which help. One's called mefanamic acid; I've forgotten the other. In my day, coils made periods heavier but I'm hearing a lot of good things about the Mirena.

Don't forget heavy periods make you anaemic.

I meant to congratulate you on letting work see you're unwell! It's criminal that it should be necessary - but, as you've said, you gotta do what works.

I'm having another incredibly early night, having used all my spoons on a walk round town while the SUN was SHINING! I barely recognised it grin

garlicblocks Thu 14-Feb-13 21:54:29

muscle relaxants and anti-clotting agents - actually that might have been clotting agents.
I'm no bloody use am I confused

I think the copper coil makes periods awful. The mirena has completely stopped mine now. I had spotting for a while after I got it but they then stopped completely.

Grockle Fri 15-Feb-13 03:07:35

I've never had a coil. Never even considered it but it sounds promising. Ill see how I go this week & think about seeing my GP. Ive not seen him for at least 6 weeks so I expect he's missing me now grin

smilingthroughgrittedteeth Fri 15-Feb-13 18:59:12

I'm supposed to be having a mirena fitted when I have my operation, I agreed at the time the gynecologist suggested it but am not sure anymore.

My periods are horrific, the pain is unbearable and I'm so heavy I can bleed through a tampon and towel in 10 mins, I've tried all kinds of pills but nothing works for more than a month.

I've always been against anything like the
pill which is hormon based so am struggling to accept having a mirena fitted.

I was in the pill (I tried several) but although they lessened the bleeding the pain was still as bad

belleshell Fri 15-Feb-13 19:13:55

hi all,lucky on the period front (thankfully after reading your posts!!) but i did try both coils and begged for both to be taken out!!!!!, my periods make my symptoms much worse.... i have had a stabbing headache for a week.... but due on any minute thankfully!!!

Grockle Fri 15-Feb-13 20:08:44

smiling, that sounds unbearable. I don't know what's triggered the change for me but having blood literally pouring out of me is a bit scary. I've bled about 100ml in 24 hours now but it's slowing down a lot now. Can you change your mind about the coil?

<waves to everybody>

Solo Fri 15-Feb-13 20:42:17

Hi all. I hope you don't mind, but I cannot read all your posts, I'm exhausted! (This is a TMI post from me)
I will say that I also have very heavy periods; I empty my mooncup every hour! which is a massive loss. I don't though, have monthly periods now as I'm peri menopausal. The Mirena was an absolute nightmare for me, with never ending dirty looking gungy blood, this went on for over 9 months and then I had periods whenever they decided to turn up ~ usually 2 or 3 times a month! and loads of side effects on top too sad

Yesterday, I was in training at work and was 'fighting' and I suddenly had a complete drain of all strength and energy. I've never felt it happen like that before and it was frightening. It felt like emptying out a jug of water or turning off a robot. Very scary...I'm completely knackered now.

fuzzpig Fri 15-Feb-13 20:56:35

Turning off a robot - what a brilliant analogy. That is SO true. My analogy only works if you've seen the movie X-men Origins hmm - where you see him under water in a tank getting his skeleton injected with adamantium. The heaviness suddenly spreads through me.

Sorry you feel so crap - did you have to stop partway through training?

I am pretty lucky with periods really, they used to be heavy but since having my 2nd baby they seem to have righted themselves, which I've heard can happen. I get one day of hell (although nothing like what some of you go through) and then it slows down and only lasts a couple more days.

I am really not sure about using hormonal contraceptives, as I am so anxious about changing things in my body (hypocritical I know as I willingly take ADs!) and the idea of something stuck in my womb freaks me right out.

fuzzpig Fri 15-Feb-13 21:00:09

BTW, the other medication is called traxenamic acid or something like that. I've never tried it, although I was given mefenamic acid as a teen.

Another interesting fact - although obviously heavy periods can make you anaemic, I've read that anaemia itself can actually cause heavy periods too confused

Grockle Fri 15-Feb-13 21:04:11

I'm funny about hormones & sticking stuff inside my body too, yet I take painkillers & ADs without question. [hmm[

I think what I've gleaned from this conversation is that I need to have a DC2 grin This would mean, no periods for 9 months + however long it takes them to return & then, going on Fuzz's experience, my periods will be much more normal.

Now, just need a man...

smilingthroughgrittedteeth Fri 15-Feb-13 21:14:30

I can change my mind about having it.

Ive read up on it and the experiences of women whove had it is really varied some love it and have no problems whilst others have constant bleeding, im torn because on one hand I desperatly want something to help but on the other im terrified it will make things worse.

DP is to squeamish to discuss it with me and just says do whatever I want so have made an appointment with gp to discuss it

Tbh I hated mine for the first few months due to the spotting. It wasn't painful, just annoying. Then the periods went away and it's great. I'll get another one fitted when this one is done (whether I want any contraception or not) just for the lack of periods. I used to have horrible, heavy, painful periods. I'm not keen for them to return.

I'm certainly not having any more children. I find it hard enough to get enough sleep as it is!

DS2 has decided on his own to get dressed this morning. It involves many trips to see me to tell me about it. He needed help with his tshirt, he puts his boxers on backwards (just like his big brother) and is working on the trousers at the moment. I bought him new red trousers and a Star Wars hoodie yesterday and he's super keen to wear them. It's very cute.

DH has gone to work (it's an open day today), so the house is very quiet and relaxed. DS1 is quietly playing videogames in his room while DS2 amuses himself with getting dressed, watching DS1's games and playing with his octonauts. DH has accepted he's depressed and that his behaviour has been terrible for ages and is going to go for some therapy. He's applying for jobs very, very far away and seems determined that'll help him break out of negative cycles of behaviour/thinking. I doubt it, but it's his life.

belleshell Sat 16-Feb-13 11:20:39

Im funny about sticking stuf in my body too wink

icepole Sat 16-Feb-13 14:47:51

I had a coil when I was younger and did not get on with it at all.

Letter from the council this morning, sick pay has run out so I will have to go back. Don't feel good about it at all but there is nothing I can do.

Grockle Sat 16-Feb-13 16:08:17

I hope you enjoyed your quiet day, Arbitrary.

Sorry, icepole... I hate having to think about money when I feel so utterly ill. I try to work until I can manage no longer but I am nearing the limit of my sick pay too. I'll still be sick but won't be paid and then things will get messier. I know I'm really lucky to have a job that pays decent sick pay though.

We've been busy - my legs hurt a lot & I'm walking slowly with a crutch. I met my sister for coffee this morning then took DS & the dog out & am now hom making marmalade again. The chopping hurts so much but I'd bought the ingredients ages ago and I didn't want to waste all that fruit.

Not heard from DP since Thursday...I've typed several 'Ha! I can do this without you' and 'I love you, please come back' messages but not sent any <sits on hands>.

icepole Sat 16-Feb-13 18:51:52

I need to find a way to get out of the job. I can't do it feeling like this. The thought of back to back difficult classes fills me full of dread.

Can you chop with a food processor, grockle?

Well done on not sending the texts. You can do it without him. The whole limbo thing will be making it as bad as possible.

The quiet day was ok. The boys played together while I cleaned the kitchen properly (including taking the hob on the range apart). Then DH came home and wanted to go to the park. It was noticeably more tense with DH around. He seems to have properly decided that he's going to find himself a therapist next week, which might help with the whole dampening the mood effect he has at the moment. I do feel like I'm in limbo too. It's much easier if they do both of: telling you that it's over and move out. One or the other is confusing and unfair.

I've been trying to do all the housework (including the bits DH usually does). He did do the hoovering this evening, but I've done everything else. It's exhausting, but I figure I've got to get used to doing everything myself so that it isn't such a shock when there's no one there to help.

Grockle Sat 16-Feb-13 20:02:44

Icepole, I keep going through that... I don't think it's a job you can do if you're struggling with what we do. Between the pain, exhaustion & brain fog it's hard enough...add a stressful job, unpredictably challenging children & it's impossible. I have no idea what else I could do though.

I have just taken on another job... I've agreed to have an 11 year old foreign student come & live with us for 6 months. It's easy-ish money but another person to feed & look after. I can't really make her cook her own dinner so I'll HAVE to be better.

Arbitrary, I use the food processor to grate cheese but not veg...don't know why. I don't think it would handle orange peel but I should use it for carrots etc. That said, we so rarely eat proper food these days. I've just ordered frozen peppers & broccoli etc so that I have a stash of veg ready to add to things if when I cook.

I ended up sending a text that said 'I miss you... not whining or begging, just letting you know we were thinking about you & DCs' blush I'm no longer crying all the time & I'm much more ok than last week but I feel sad that I'll never have DP squeezing my hand or laughing with the DC again. And I miss his DC... when we were all together it was lovely - me and a house full of boys.

You're doing very well. Be proud of yourself.

Based on the 'frozen mash' thread, I went and bought mash, chopped onions, chopped garlic, ginger and some herbs for the freezer. Had the mash tonight. It's actually nice, and only takes 3 mins in the microwave. I didn't say anything until after tea, but DH agreed it was nice. And much easier than making it yourself. I used the onions and garlic in a stew I slow cooked in the oven too. I think there was also a mix of frozen chopped stew veg and herbs in the cabinet with everything else, which would have made it even easier.

My mum also bought me the Jamie Oliver 15 minute meals. There's no way I could do it in that time frame but it is a really good source of low fuss recipes. Most of the chopping is done in a food processor in all the recipes. And I can see ways to adapt others to make it even easier (e.g. Using frozen mash/sweet potato mash, ready chopped onions and garlic). It's quite salad heavy though, which might be a problem (none of the boys in this house are enormously keen on salad).

Grockle Sat 16-Feb-13 20:15:16

Thank you smile I want him back

Frozen mash? shock I will add it to my list. I feel so lazy because I used to be quite a foodie & made everything myself. I don't care any more, I just need a quick & easy way to provide a range of decent-ish food. More interesting that cereal/ toast that poor DS has been living on!

Be warned: the frozen mash looks horrific once you open the bag. It comes in pellets that you add a tiny bit of water (or milk) to, stick some cling film on top of and chuck in the microwave. You stir it half way (and it still looks dire) but it's fine once it's done. It tastes absolutely fine. I added extra butter and cheese and stuck it under the grill for a few minutes.

Don't believe the quantities on the packet either. I doubled the amounts it said to make for 6 and there wasn't really enough. Next time I'll at least triple it.

Apparently there is frozen sweet potato mash to be had too.

Grockle Sat 16-Feb-13 20:26:05

I have added it to my order. Thank you for the warning! I might add other things too. I really want to be able to make proper food again, even if I do it by cheating.

I have learned that there are more frozen (and quickly microwavable) possibilities than I thought possible. There's frozen rice too.

Grockle Sat 16-Feb-13 20:41:28

I'm amazed! Why have I not discovered this before now? I could do an entire roast dinner without ever seeing a fresh vegetable! That makes me a little sad and shocked but also very happy!

I know. I learn all this earlier in the week from a MN thread!

You can buy frozen gravy. You don't even need to do the granules thing.

Grockle Sat 16-Feb-13 20:58:13

WOW! Arb, could you link to the thread, please? It sounds amazing! Off to add frozen gravy to my list!

Grockle Sat 16-Feb-13 21:01:51

Ooo, found the thread now! Why am I so excited about frozen food? It's such a revelation!

garlicbreeze Sat 16-Feb-13 21:05:16

YY to frozen this, that and the other smile I started off buying them but can't afford that now, so do my own. I'm quite the DIY instant food virtuoso these days. I buy what's on special offer and prepare them when I've enough energy - for use when they aren't or I haven't!

Mash: cut spuds in the food processor, using a grater/thin slice disc. Freeze. Freezing breaks down tissues so they can be microwaved in a minute or two.

Carrots & peppers: I haven't got an attachment that cuts into chunks so slice them by hand in front of the telly, then freeze.

Onions: Chop finely in the food processor, freeze. Good for sauces. You can do this with any fruit, too - you'll get a purée when heated. Bananas can be frozen whole or sliced (delicious still frozen!)

Tomatoes: You can freeze them whole for use in sauces.

Herbs: I freeze whole & fresh. You can crumble them once they're frozen. Things like thyme and rosemary, the leaves come off the stalks with a shake.

I depend on frozen spinach, peas and sweetcorn. You can add frozen peas, corn and pepper to rice just as it's finishing - makes 'pretty rice' with only one pan to lift for all your carbs & veg smile

The slow cooker is my second-best friend, after my electric blanket! It's on every day that I can get things together and, if I can make a lot of stuff, I freeze extras for bad days. If I cooked meat with bones in, I put it back on with water & herbs for soup.

Unfortunately the Atos people think the fact I do the above means I "cook from scratch every day" which makes me very angry - yet another example of how coping with your incapacities leaves you vulnerable to accusations of skiving! Mind you, anything would. I thought I'd change this to "I microwave a frozen dinner most evenings," which is true although I made it in the first place. But they'll have me for something else, no doubt angry

garlicbreeze Sat 16-Feb-13 21:06:00

Ooh, link?? smile

Grockle Sat 16-Feb-13 21:22:17

Frozen mash thread

We have frozen peas (or corn) with pretty much everything. I am definitely going to get other frozen veg now. My hands ache when I hold a knife & any chopping takes forever because I have to keep stopping to rest my hand. Life's too short to do something that hurts if you don't have to. We won't be able to afford it forever but for now, I may as well take advantage.

garlicbreeze Sat 16-Feb-13 21:31:41

Thank you for the link, both!

Know what you mean about chopping! I had to abandon my pancakes due to whisking fatigue, dammit.

I get the kids to whisk pancakes. They love it.

Grockle Sat 16-Feb-13 21:42:00

I cheat and use the hand blender. Well, DS uses the hand blender. It's lovely when children are old enough to be interested and able to do things that help. DS, thankfully, loves being independent. He wants to cook & wash up etc by himself. It works well for me because I need him to help with those things & knowing he enjoys it makes me feel a little less guilty for being so crap that I can't even cook by child some dinner.

Think of it this way: you are teaching him incredibly valuable life skills. That's awesome parenting.

Grockle Sat 16-Feb-13 22:12:55

I try to think of it that way. He can now bake & decorate fairy cakes by himself & is good at freezer food & beans on toast. I do hope that he benefits from this & that it's not all so negative. Since he's made me realise how much he's struggled with me being ill, I've worried a lot.

garlicbreeze Sat 16-Feb-13 23:43:24

I can see why it worries you, Grockle, but food preparation is a life skill. Very many kids enjoy it. I often think it's a shame parents don't teach or encourage their DC to cook (and do basic DIY, sewing & housework, for that matter) as they're missing out on family activity as well as imparting crucial skills.

Could you figure out which 'compromises' are actually positives, and which burdens? That way, you'll feel happy about the positive ones and, perhaps, gain clarity over how to compensate for the negatives.

Just a thought smile

fuzzpig Sun 17-Feb-13 07:20:31

Will definitely be checking out the frozen thread. We take a lot of shortcuts already - frozen veg is brilliant, as is grated/sliced cheese.

I need to phone up occupational therapy (part of local SS) to see about getting the chair for the kitchen.

I agree that it's great you are teaching DS to cook. Especially as he's a boy (I am aware how sexist that sounds, but how many threads have you seen about husbands who can't/won't cook?!). I really want to start cooking with DD (5.7) but I find it really stressful as well as tiring (tiny kitchen).

Yes. It's amazing how many men cannot (and will not cook). DH is hopeless and FIL does not cook. I don't want my boys growing up not being able to cook.

DS1 loves DIY. DH never lets him help, but FIL (who is a handyman, professionally) does whenever he's up here doing any work. DS1 really impressed him last time by being strong, capable and imaginative (and figuring out how to do a tricky job quicker than FIL). FIL also let's DS1 loose with power tools!

CFSKate Sun 17-Feb-13 14:35:07
magso Wed 20-Feb-13 21:17:27

Does anyone else really struggle to sit still without feeling ill, dizzy and nausiaus? Could this be the OI/Pots. I have come to the conclusion that I find that awful dizzy struggle to stay conscious is worse than pain for me.

fuzzpig Wed 20-Feb-13 22:20:14

I find that standing is intolerable. Sitting up can sometimes be just as bad but usually it is a little better. I prefer being at home where I can lie down rather than sitting upright.

POTS symptoms have been really awful lately. I still haven't heard a thing from occupational health though. I've 'managed' full time for nearly a month, but at what cost?!

I feel horrendous at work but have got to the point where I'm scared to tell anyone (well, anyone senior who could allow me to rest or send me home - luckily I have a couple of colleagues who I can be honest with) so I just struggle on. And at times I feel ok at work, but then I know that cumulatively I'm making myself worse. I've not managed anything outside work, I have no life.

fuzzpig Wed 20-Feb-13 22:22:23

I get really dizzy and spaced out a lot. Don't have nausea often although I get the odd wave, and I am really off my food lately (to the point where I even found myself wondering if I had morning sickness hmm)

Grockle Thu 21-Feb-13 07:43:22

Interesting about dizziness. I have Ménière's disease, which causes intense vertigo (I have to lie on the floor & try to grab things to hold on to for up to 4 hrs) & frequent dizziness & spaciness as well as nausea. I asked the rheumatologist if it was likely to be linked to my fibro/ lupus & he said not.

I'm feeling rather crap about everything atm & struggling a lot. I'm just a big lump of woe & misery sad

buildingmycorestrength Thu 21-Feb-13 07:49:01

Grockle, I thought Meniere's disease had some kind of super easy, super effective treatment! I think my grandfather had it, and he said the doctor literally laid him on a table, twisted his head to an particular angle and sat him up. This dislodges the crystals that built up and eliminates the symptoms.

Have you heard of this?

I'm dealing with the possibility that I actually have some kind of muscular dystrophy...my brother is currently being tested and if he has it then there is a 50% chance I have it. sad I have some of the same symptoms.

He should know in a few weeks and I'm just having to use all my CBT training to try not to think about it too much. Bad day the other day but kept busy yesterday.

smilingthroughgrittedteeth Thu 21-Feb-13 10:05:23

Saw GP yesterday and she has been speaking to my endocrinologist they have a new theory they think I could possibly have addisons disease.

I'm sick of theorys I just want a confirmed diagnosis

fuzzpig Thu 21-Feb-13 13:42:04

Aww smiling sad how frustrating. I really hope they can confirm something soon!

Grockle Thu 21-Feb-13 14:02:41

Building, that's a different type of vertigo that can be fixed by moving your head - it's a positional thing. Mine is not like that & can't really be made any better. They can give you diuretics & anti-emetics etc but they've not really helped mine. The tinnitus that goes with it is permanent although it can be fixed with surgery but that is likely to lead to permanent hearing loss. I'd rather live with tinnitus & mild hearing loss!

Sorry you may have muscular dystrophy. What a worry. I know little about it so have no idea about treatment.

Smiling, it is so frustrating, isn't it? How do they confirm Addisons?

smilingthroughgrittedteeth Thu 21-Feb-13 14:24:35

By another blood test, they take blood then inject me with somthing then take more blood.

buildingmycorestrength Thu 21-Feb-13 16:04:49

Aw, man, I was so sure I had an answer! I'm so sorry to hear that it is so hard to treat.

Smiling, the waiting for tests is just awful. I am really having to just stop myself thinking about it at all or I get myself in a right old twist. Are you struggling?

smilingthroughgrittedteeth Thu 21-Feb-13 17:55:12

I was doing ok till I decided to google addisons disease now im a bit worried but to be honest im so worn down with it all I think it would be a relief to be able to say to people, "ive got addisons disease thats why im tired/dizzy etc" and they can treat it with medication for life so it isnt the worst thing they can diagnose

magso Thu 21-Feb-13 18:00:23

What a mixed bunch we are! I don't know anythying about MD, or for that matter Addisons although I have heard addisons is one of the illnesses that may need to be ruled out when CFS is considered. My ENT mentioned that I might have Meniers (the test for benign positional dizziness made me feel awful but did not elicit the diagnostic nystagmous). I agree standing still is extemely difficult, I just had not realised how awful sitting still is as well. I either lie down or sit with my feet up. At work I am up and down a lot. The mindfulness course Ive been attending requires sitting still, eyes closed with feet on the floor which makes me feel faint and ill. I may not continue. I am still not convinced it is right for me anyway.
Why are we all struggling? is it the cold/lack of sun shine? Extra ration of spoons needed I think!

icepole Thu 21-Feb-13 20:47:53

What does the spoon thing mean?

magso Thu 21-Feb-13 21:13:44

See spoon theory-link on grockles opening post.

Grockle Thu 21-Feb-13 21:17:51

Spoon Theory for icepole

Hope everyone is ok, aside from worrying.

I had a nice morning with friends, walking the dog at a country park but had to come home to sleep. So tired... of being tired. I want my life back.

Have any of you seen this M.E campaign? I might make a little film & send it in.

Grockle Thu 21-Feb-13 21:19:30

We are a mixed bunch, aren't we? All with similar symptoms but a range of diagnoses... and lots of us have other problems too. I was reading something earlier about ME & the high suicide rate. I can see why sad

icepole Thu 21-Feb-13 21:25:33

Ahh. Yes that is good. I particularly relate to the cost of things, one event means you can't do the next one type thing. Clever analogy.

Grockle Fri 22-Feb-13 08:32:46

Yep. I seem to have a spoon shortage today. I'm so scared about going to work next week.

Grockle Fri 22-Feb-13 08:36:28

Ooo, I thought you'd all be pleased to know that my frozen mash arrived last night! I'm really off food atm though, which has had the bonus of me losing a stone but means I don't like anything. I used to be a bit of a food snob.

Also, I now have an 11 year old Chinese girl living with me for 6 months. Not sure it was the best plan!

fuzzpig Fri 22-Feb-13 13:50:09

Just checking in as I had session four of group therapy just now. It was good but I feel a bit wobbly. I talked about the abuse a bit - not what happened but how it affects thought/emotions/behaviour as we were discussing the CBT model. We all went our separate ways straight after this time, and I know it is really irrational, but I feel like I scared them all off. Even though I know they had to get to work etc (and we had overrun anyway so no time for a quick lunch first). This is what scares me about having friends - I am terrified I will get dependent on them and push them away. We talked about 'inner critics' a lot though and I know that it is mine talking!

icepole Fri 22-Feb-13 20:49:42

Hey fuzzpig, my guess is that they are probably impressed with you being able to be honest and vulnerable like that. Everyone has their secrets and hurts and not everyone is so brave as to take the step to talk about them. I do think opening up can make you feel vulnerable though so make sure you are being gentle with yourself tonight.

I start a phased return Monday, very anxious about it.

Grockle Fri 22-Feb-13 21:11:55

Hope everyone is ok. Belle & Solo haven't been around for a while.

Fuzz, I agree with Ice...look after yourself & don't fret about everyone else. I expect they were impressed with your openess & honesty too.

I am funny about making friends. In a different & I don't even know why. I love the idea of having friends but find it hard to actually have them. I tend to keep people at a distance because I fear I will get hurt. I have lots of acquaintances, people to go out with, to meet for coffee etc but very few that I'd call close friends.

Good luck on Monday, icepole. I have done NO planning whatsoever. I am feeling so ill with fatigue each afternoon, I don't know what to do with myself. It comes on suddenly & I feel ver very drunk...like I am going to be sick. It slowly subsides but it feels hideous & I have to lie down. I am really not convinced that work & fibro/ lupus/ whatever is compatible.

fuzzpig Fri 22-Feb-13 21:28:10

Thanks both. I am pleased I opened up - I am used to talking about stuff openly to some extent due to previous therapy, although I haven't done it in a group session before so that was a bit odd. I am being kind to myself - I travel through Victoria station and that means Krispy Kreme grin

I had some pretty messed up friendships in my teens at school and I think that's why I struggle now. I have a few friends particularly from college but I still find it very hard to open up.

I actually have a 'friend date' (frate?! grin) with a colleague who recently moved to my area from far away - she's had a couple of rough years too although for very different reasons. But I am SO nervous even though for the most part we will be watching a movie and not needing to talk etc. It is exciting to think I might have an actual friendship with someone near (we moved here in 2008 FFS) but I am scared!

fuzzpig Fri 22-Feb-13 21:31:16

Forgot to say, will be thinking of you both on Monday. I am nervous too, although it's going into my 5th week in a row. It's getting harder and harder to actually admit that I'm really struggling. But in some ways it's easier to go in now that I haven't had any time off. Even though what I really want/need is, erm, time off. Confusing!

Icepole what kind of hours are you doing for your phased return?

Grockle Fri 22-Feb-13 21:42:51

Ooo, yum. I love Krispy Kreme. When I lived in the US, there'd be Krispy Kreme 'restaurants' on the side of the highway. If the red arrow on the sign was lit up, it meant they were cooking the doughnuts. If you go in, all the restaurants have glass walls so you can watch the entire process...and they hand out free hot doughnuts while you waited to order <drool> I feel all nostalgic now!

Your friend date sounds nice. I miss having friends to do that kind of thing with. My best friend is thousands of miles away so I don't see her very often any more. I don't know many people here & I've been here since 2009 blush Most people round here have lived here all their lives though so they all have long-term friendships. I'm a newcomer. I'm not very sociable anyway, I suppose... I don't like going out & am often feeling so crap that I'd rather stay home in bed.

The work/ time off thing is a nightmare to juggle. You've done really well, fuzz.

Solo Fri 22-Feb-13 21:53:11

<waves>

The new Krispy Kreme in Gateshead has a glass window/donut cooking contraption thing too, and they hand out free hot donuts too. It also means that we can get an unglazed donut for DS2, who will not countenance a glazed one.

The drive thru makes it impossible to get out of the metrocentre car park when it's busy though, which is irritating.

Grockle Fri 22-Feb-13 22:02:45

grin solo <waves>

I might need a trip to Gateshead! It is a very long way from me though.

icepole Fri 22-Feb-13 23:03:10

Three mornings the first week. My senior class are being verified so am very worried about that as they have done nothing while I have been off and paperwork has gone missing. My last verification was a nightmare so to get another in these circumstances is not nice at all. My higher class is in a mess too, there has been no cover.

I think it will set me back and I will just have to keep going. This is my fear, that and that by doing so I might do permanent damage to myself.

Grockle Fri 22-Feb-13 23:27:37

My class seem to do nothing when I am off. And paperwork goes missing... ALL my evidence for any progress, gone angry

I hope 3 mornings is ok for you... maybe it won't be so bad as you expect. I hope not anyway. Will be thinking of you.

icepole Sat 23-Feb-13 02:06:44

I hope so too! I can't believe my seniors have done nothing for so long and they still expect me to get all their paperwork done at all never mind for verification.

My space has been trashed too but I'm just going to have to live with it.

Grockle Sat 23-Feb-13 15:34:30

At least I don't have exams etc to prepare students for. I still haven't done any planning blush

belleshell Sat 23-Feb-13 21:32:19

Hi All, sorry i havent checked in for a while, ive actually been away for DP 40th birthday.... I hired a 1973 VW Camper van and we have been around the Dales...had a fab time but so cold and i am F**Ked now.... i did manage a 4.5 mile walk, with a few pub stops and now i can barely move, concentrate, focus, and today is DP actual birthday and i didnt get dressed till 4pm... he is now at the pub with the kids and im at home!!!!! ACE>

Fuzz, opening up is the right think to do......... i have read a thing today and it went a bit like this....how heavy is this half full glass of water ( it was a visual thing) the answer wasnt how heavy it was but for how long you held it... if you put it down straight away then its not heavy if you kept old of it for a day it would weigh u down but a week or a month........ our inner demons are the same...... this really rang true to me!

Grockle 11 year old chinese girl????

Icepole, good luck with monday..

and to you all spoons to you all

oh and ps we have a krispie kreme drive thru in leeds too

Grockle Sat 23-Feb-13 21:42:17

Do you Belle?! I may have to be in Leeds over the Easter holidays! I will have to Google Krispy Kreme.

Sounds like a lovely trip. Hope DP enjoyed it & that you are recovering.

I live by a language college so there are lots of foreign students around. They are usually 16-18ish & stay for 3 weeks but I agreed to have an 11 yr old for 6 months. I'm registered as a private foster carer so effectively have 2 children to look after now, one of whom barely speaks English. I agreed to do it because it is relatively easy money & DP was meant to be here to help. He's going to come and get the rest of his stuff tomorrow night sad & then he'll be gone for good.

I have mouth ulcers again & they hurt angry

The holiday sounds like it was fun, belle. Well done on the walk.

I get mouth ulcers all the time. They're just awful. I think it's the naproxen, but it might just be me. I'd rather blame the naproxen though. My dentist is always dreadfully concerned about the mouth ulcers, bless his heart. He's always trying to think of ways to help me with them. He's very young too, which makes him seem so very earnest.

I have decided to go back to work on Wednesday. I shouldn't actually have to physically go in til a week on Tuesday (hence my cunning Wednesday return), which further delays the bloody awful commute.

Sorry about your DP, grockle. I can't imagine you're looking forward to him picking everything up.

DH is being odd. He seems uncertain about whether he wants to split up or not. He's asked me to go to relationship counselling with him and I've agreed. I'm dreading it, tbh. Yet, at the same time, he just applied for a job in Bristol. He asked me today if I wanted to go part-time at work. I ended up really upset about it because I will never be able to do so since he's planning on leaving and he asked it in a resentful way. Apparently he actually meant that he thinks that I should go part time if we were to stay together (as it would make things better for everyone), but I think it's cruel and unhelpful to say things like that.

We're going to see the gruffalo's child at the theatre with some friends tomorrow. Or, more accurately, we're all accompanying our 3 year olds to it. It should be fun.

Grockle Sat 23-Feb-13 22:13:21

My rheumatologist suspected Lupus on the basis of mouth ulcers (& a couple of other things) - apparently it's quite common. I suppose we are all run down so more likely to get ulcers etc. I was reading about Fibro being an auto-immune problem (like Lupus, like AIDs etc)

I'm think I'm going to tell DP not to come tomorrow - the last thing I need before going back to work is a big fight with him. Sorry things with your DH are odd, Arb... I do think you need to do whatever you can to remain independent & financially ok, even if you do stay together. I agree that he is being unfair & unhelpful. I hope the counselling helps.

Enjoy the Gruffalos child. We saw the Gruffalo at Camp Bestival last year & I was drunk I think DS loved it

belleshell Sat 23-Feb-13 22:15:43

its on same industrial park as ikea, and home sense my 2 favourite shops!!!

im sorry tomorrow will be hard!!! but maybe a break will do u both good
xxx

Grockle Sat 23-Feb-13 22:18:27

Oooo, I used to live by there. We'd often go to Ikea for dinner on a Friday night when it was buy one, get one free on meatball meals. Yum!

My condition is an autoimmune disorder too, so it could cause the mouth ulcers. I still blame the naproxen though. I have to take omeprazole with it so that it doesn't destroy my stomach.

DH seems to be eternally annoyed that I get 'all the side effects' of whatever drugs they give me. He can't seem to understand that stronger pain killers tend to have horrible side effects. I tried pointing out to him that all the hideous effects of tramadol are listed as common side effects. If I was pretending to get side effects, it has plenty of even more hideous uncommon and rare side effects. Nor does he realise that I try to minimise how much he (or the kids) knows about how crap I feel all the time, so if I collapse in the kitchen (fr example), I really don't feel good.

fuzzpig Sun 24-Feb-13 04:24:37

You're supposed to take a stomach protector when you take naproxen?! Yikes, I didn't know that. I took naproxen for a while but gave it up - although due to lack of effectiveness, not side effects. I'm not generally too affected by side effects of meds, but then I've not taken anything really really strong.

So much pain ATM and having lots of bad dreams - I was on the sofa anyway as too exhausted to get upstairs last night, so I've put Big Bang Theory on the telly to distract myself. DS (3) has also come down at some point and is now asleep at my feet confused I do really love sleeping with my snuggly little boy but there is so little room on the sofa, and he was sleeping on my head earlier. He's like a cat hmm

I feel like I've done a six day week, having the hospital trip on my day off is just crazy.

fuzzpig Sun 24-Feb-13 04:27:31

Oh and good luck if dp comes over grockle.

I have some friends visiting today, it's usually very low key but DH will be out some of the day and it just feels like too much

That's a very cute description of your DS, fuzzpig. Sorry you can't sleep.

You don't have to take a stomach protector with naproxen. It's apparently one of the more gentle NSAIDs but they can all cause stomach issues, particularly with long term use. I was originally prescribed a longer lasting NSAID but my stomach can't cope with it even with omeprazole. I nearly gave myself an ulcer taking inbuprofen for flu when I was an undergrad. That was hideously painful and my GP at the time said I should avoid doing so ever again. So I wasn't surprised that my stomach didn't like NSAIDs when my rheumatologist prescribed them. Even with omeprazole I still get quite a bit of heartburn.

I have been having weird, very vivid dreams for a while. Sometimes they're outright horrible. I was struggling to go to sleep last night too because I didn't want fall back into the bad dream from the night before. I never had bad dreams before I was ill.

Grockle Sun 24-Feb-13 09:29:54

Aww, your DS is lovely, although I can see how it's not necessarily ideal for you, fuzz grin

Sorry neither of you can sleep. Bad dreams are awful. I often have very vivid & disturbing dreams but I'm sleeping much better now DP has gone

DS wants a pyjama day so we're snuggled under blankets, watching the Penguin programme. My student is out for the day so that helps.

Hope your visitors aren't too demanding, fuzz. I dread having people come over, mainly because I don't know when they'll leave! I have a well-meaning friend who turns up for coffee & is then with me til 11. She came over in the summer for a quick chat at about 2 and was still here at 7, waiting for me to cook dinner hmm when all I wanted to do was go to bed!

fuzzpig Sun 24-Feb-13 09:45:06

Ah thankfully this friend is a very busy person anyway and usually only stays for a few hours because she has so much else to do! smile

I'm her bridesmaid in May so will have lots to talk about, and I am super excited about her hen party - we are having a chocolatier class! grin A bit nervous about how exhausting all the wedding stuff will be but I hope I'll have my reduced hours set by then.

I've still not heard anything from occ health or even my manager about this. Grr. Life is just so stressful at the moment.

belleshell Sun 24-Feb-13 13:07:14

today i want to stop the world and get off for a while (tired grumpy and a bit emotional....not sure why)

Grockle Sun 24-Feb-13 13:38:40

A wedding should be something nice to look forward to, Fuzz. And reduced hours too.

Belle, I do too. I'm tired of life. Not in a suicidal way just a fed up, tired, it's too hard way. I don't have the energy for anything, I'm not interested in anything & I just want a break and for the sun to start shining & i can't help thinking that if I'd died years ago when I should have, life would be better for everyone. Maybe I am depressed actually confused

<Gentle hugs>

belleshell Sun 24-Feb-13 16:22:18

oooooo grockle (hugs) i do get what you mean, but im not sure why you should have died, and am very glad you didnt.... do you take any AD's.... i know you are on amitriptyline, but i mean AD for actual anxiety or depression... You have had so much to put up with lately, and you arent running on full stream, it might answer you loss of appetite....

would the foster thing help you reduce your hours if you did it more often, perhaps with older kids from the language school

i hope you have had a nice duvet day and the mars bar cakes were just as gorgeous as they sound..xx

Grockle Sun 24-Feb-13 17:15:27

Sorry, I'm always so whiney on here.

I'm not on ADs atm. This time last year, I tried going back on them (have been on them in the past for long stretches) & after trying several different ones & them not helping, it was agreed that if I could sort all my physical problems out, I wouldn't be depressed which is what I'd said all along.

Now, a year down the line, my physical problems are not sorted and may never be. Hmph.

I could drop a day's work if I have students here. I think I'm finding it hard to adjust to things. 3 months ago, I was with DP, he looked after me & helped with DS while I tried to go to work 4 days a week. I'm now a lone parent, trying to do 2 jobs, looking after 2 children & not doing anything very well. And that means that I don't have time or energy to look after myself.

belleshell Sun 24-Feb-13 17:30:05

GROCKLE your not whiney at all....

Dear all
if you could change one thing other than your diagnosis in your life what would it be???

Mine would be my job 4 days a week,

Grockle Sun 24-Feb-13 17:59:20

Um, I'd not work. At all. I'd do voluntary work, like I've done before & stay home & bake cakes all day. If only...

smilingthroughgrittedteeth Sun 24-Feb-13 21:37:07

Right now I'd change everything, I'm struggling and would like nothing more than to live on an island on my own where I can just sleep and rest without feeling guilty all the time

If I could change anything, I wouldn't work either (I'd want to keep the salary though!). I'd rest, do fun stuff, do voluntary stuff related to my area of expertise, have fun with the kids and generally be happier. I find work stressful, even more so because I hate not being able to do anything 'properly' (or at least as well as I can). I always feel like I'm letting people down and it is horrible.

Alas.

The gruffalo's child was ... Odd. A bit minimalist for an audience of small children really. DS2 came out saying that he wished they'd had proper costumes. My friend couldn't actually recognise snake at all. I think the kids enjoyed it, but DS2 said the book was much better.

belleshell Mon 25-Feb-13 13:26:28

funny isnt it that its all work related, today i wouldnt work either.... i have been to work, come home and now have a weeks worth of winter camping clothes to iron.... i could cry, i feel like i have blocks of lead on shoulders, and my usual iron trousers..... all this because i had a week away, with no kids, no ties, slept lots, and went for a walk.... my DD is having a minor op this week, so i need to be off 2 days with her.....i cant wait....i seriously need to look at permenant reduction of hours, but really not sure how i will do it finacially................

belleshell Mon 25-Feb-13 13:26:58

Sorry i came to wish you all that are returning to work today a spoon filled day....x

Grockle Mon 25-Feb-13 17:18:54

What a shame about the Gruffalo's Child. I feel like I've been cheated if I've paid for something that isn't as good as it should be.

I've been refused DLA. No surprise but they say it's because I can cook a meal for one (I can't - DS cooks his own dinners mostly) & because I can walk at least 100m. The dr who did my assessment watched me take 4 slow, shuffly steps whilst I grabbed the sofa then fell into the wall. hmm

Hope DD is ok, belle. Enjoy the time off.

belleshell Mon 25-Feb-13 21:31:44

hope everyone s ok??

That's crap about the DLA. The whole culture around benefits at the moment exposes national insurance as little more than a scam really.

I have to go and see the therapist tomorrow. Apparently he needs to see me alone first before seeing DH and I together (so as to hear both sides independently). I'm a bit nervous about it. I'm sure it'll be fine, but I'm not eager to go.

I dragged myself to my yoga class tonight and discovered that it was going to be mostly backbends. Gah. It is actually important for my spine (doing yoga for the past 2 years has done wonders for my mobility) but backbends are so hard. That is, of course, why i should practise them. It's particularly disheartening when I look round at women 30 years older than me who are considerably more flexible than me. The teacher's very good though, and specialises in back issues so she is very careful to ensure none of us do anything silly.

Grockle Mon 25-Feb-13 22:25:23

Best of luck tomorrow, Arb. I hope it's helpful.