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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.


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

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 xmas day, i cooked all meat in roasting 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 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 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..


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

For the new thread, reposting these useful links.

Support for the severely affected - 25% group

Medical information

ME International Consensus Primer


TV news report on success of Rituxan drug trial (you may need to click on the captions)
more report about Rituxan

more mitochondria research


fundraise as you shop
Amazon shopping


Newsletters, latest is Dec 2012

film about severe ME

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 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 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>

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