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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