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Spoons! Support for those with chronic pain & fatiguing illnesses

931 replies

Grockle · 03/04/2013 13:48

Spoon Theory here

OP posts:
fuzzpig · 30/04/2013 14:20

The worst part of trying clothes on (or even just getting dressed) for me is the fact I have to put my arms up. It REALLY hurts and makes my arms feel weak and wobbly - not sure if that is more to do with POTS and poor circulation etc. I even really struggled with that as a child, during PE and stuff. It's like the blood just drains away instantly.

gallifrey · 30/04/2013 14:25

fuzzpig I sort of have the same problem with my arms, they go weak and wobbly when I am washing my hair x

Weegiemum · 30/04/2013 14:29

I've never see this thread before - but I'm very into spoons!

I've got either CIDP or CIAP, basically a nerve conduction problem, they're not quite sure which but even if they did know the symptoms and treatment are the same. It causes numbness in my hands and feet and lower legs, also around my mouth. I've got poor balance, no position sense (can't clap my hands with my eyes closed!) and the neurological fatigue is overwhelming sometimes. And I also fell (see - no balance) at the weekend and badly sprained my ankle.

Been reading through this - I'm glad to find some other people who understand that getting up, dressed and downstairs okay has totally wiped me out!

belleshell · 30/04/2013 18:46

Welcome weegie....nice to have you, sorry to hear how u struggle...

i was wondering all, do you struggle with insurance, i have holiday insurance through the bank but i have to pay a supplement, and my critical illness cover for my mortgage is so high, because i have had investigations for MS, even thou its not MS and a consultant wrote a letter stating so...all my insurances have a clause stating i cant claim for certain degerative neurological conditions...i just wondered how the rest of you fair with insurance!!!

magso · 30/04/2013 18:52

I have sympathy for anyone caring for littleones (especially 2 or more) with illness. Ds is older but because of his sn can be demanding to care for (and sleeps very little!) but at least he likes to watch TV or a film sometimes. I swear he is messier than a small child(the chaos happen faster and bigger now) but just thinking back to his toddler years makes me glad I did not get ill then!!
Solo sounds like you need the bank holiday. Hope you get some extra spoons!
My Dh is often away for work. I used to enjoy it when I was well ( its rarely for long at a time) because I could eat earlier with ds, go to bed early with a book and it was more relaxed, but now I often struggle and DH returns jet lagged and exhausted to a messy house and ds in need of running off his boundless energy.
I used to like window shopping given half a chance but now ofcourse it is better to browse online. Bras however need trying on. Having gone up a few sizes recently (I blame the ami) I ordered some into my local store to try on, and returned what did not fit. It worked quite well - I am lucky to live near an out of town store and can choose a quiet time to get in and out easily. Actually I find queing the hardest thing. I think I (and my drunk legs) are known there now! Its more a case of getting stuff to do the job (in an energy saving fashion) rather than things I like now.
Wishing extra ration of spoons to all.

magso · 30/04/2013 19:02

Hi Weegie (missed the last few posts) and welcome, but sorry to hear your ankle was injured in your fall. I had a bit of a black eye last week after banging my head. Are you any better than you were now the doctors are getting used to your condition?

Weegiemum · 30/04/2013 19:06

I have to phone our insurance company about our annual policy as we're going abroad in July for the first time since I got sick. I'm expecting either an excess or no cover for neuro things - my main issue is am likely to fall and I need cover for that.

Thanks for the welcome. It's nice to meet other people dealing with long term type conditions. In 18 months I've gone from being independent to no longer being able to drive, cut my working hours by half, having a Personal Assistant for housework etc (though over a year I've got a lot of the use of my hands back - can now write and sew again, am relearning to knit!).

It's the balance and the extreme fatigue that bothers me. Because my toes are totally numb, especially my big toe, I can't use them for balance. But they HURT if I don't take my amitryptaline. And I'm working up to doing a mile walk in the summer - from being totally off my feet in January 2012 I can walk 1/2 mile on a good day now. So pleased with myself.

I also have RA and Raynauds (all immunological issues) and have been tested for Sjogrens (got a numb bit on my lip from salivary biopsy, to go with all the other numb bits!

Weegiemum · 30/04/2013 19:09

I've not got worse, but not much better. Swings and roundabouts!

fuzzpig · 30/04/2013 19:46

Hiya weegie and welcome :) if you are who I think you are we are already FB friends? :o

We haven't been on holiday for a couple of years. My line manager told me about a nice and ridiculously cheap channel island cruise though and I'm quite tempted - particularly as neither of us drive, getting around on holiday would be incredibly stressful with my health as it is, and DS still being a bolter, so the idea of lounging on a boat is rather attractive.

Have to wait and see what happens with this JSA problem though. DH is going to a compliance interview in a couple of weeks, but he certainly did give them all the info (they evidently just didn't use it!) so hopefully it should be ok. Still making me very anxious though.

And OMG yes queuing! And waiting for buses. It's awful. The bus stop I go to for work has no seat. I would really benefit from a walking frame with the little fold down seat thing, not that I always need to lean on something to walk, but because I just cannot stand still for more than a few seconds (because of the POTS rather than the CFS). On a less painful day, I can walk down to the school, but the second I stop the dizziness just floods in - like a tidal wave, full body version of a head rush.

I guess even a stick would help as at least I could lean on that in queues. But I worry that people would see me not using it to walk, and therefore think I'm a fake? Because actually, when I'm walking, I prefer to walk as fast as I can manage, precisely because I can't stand up. If that makes sense. The faster I walk (which obviously isn't that fast due to other symptoms) the less time I have upright. So people might see me walking like a normal healthy person and totally judge me for suddenly getting a folding cane out of my bag once I get to the till/bus stop :(

This has really put me off using any walking aid so I just try and lean against something. I need to discuss it with a physio, I was supposed to be having a 'walking assessment' but haven't heard anything so need to chase it up.

Grockle · 30/04/2013 20:18

Hi Weegie

I haven't mentioned Firbo etc on my life insurance. My Meniere's is declared & I am not covered for any ear problems. I didn't think about informing them of new illness Confused

Is it ok to write to my consultant? I left yesterday, with loads of questions & no idea what will happen. There is no plan of further treatment & no discussion on whether I will improve or what. And I kind of need to know. For my sanity.

I am grateful that I didn't get this til now. I couldn't manage a toddler. DS is little enough to be snuggly & lovely but big enough to help a little.

One reason I use my walking stick or crutches is to lean on when queuing. I just can't manage otherwise.

OP posts:
magso · 30/04/2013 21:45

Grockle I work in a hospital and patients do write in with questions sometimes. I am wondering about addressing some inaccuracies in a letter from one of my doctors because I do not know if it is important or not.

When I looked at holiday insurance cover I was quoted for excluding any injuries/illness due to my conditions and also the excess for including each of them .

CFSKate · 30/04/2013 22:40

An hour or so left to vote, please if you can ask anyone else to vote please do so, a handful of votes could make all the difference, we are in 1st place, but only just.

ArbitraryUsername · 01/05/2013 09:24

Hello all. Sorry I've been so crap at keeping up. It's marking season at work, so I'm swamped. Sad I'm OK though, just trying to make sure I meet something resembling my deadlines.

buildingmycorestrength · 02/05/2013 09:15

Hi Arb

Lead suit day for me.

And first CBT for CFS session in a bit. One on one. Have had so much therapy in my life that I'm not holding out a lot of hope for this to be magical. I know myself pretty well now. But, will take the support with both tired weak aching hands, thanks!

magso · 02/05/2013 09:56

Well since you have loads of work, I hope you have somewhere comfortable (feet up) to mark Arbitrary, so at least your body is not straining too hard.
Hope your CBT session is useful Building. I had a couple of 121 CFS councelling sessions (not called CBT) to get me pacing better. I was not too hopeful because I thought I was pretty good at it already, but looking back it was good - although I was shocked at how little I was supposed to do! The most useful thing was sorting out I was ill not lazy IYKWIM.
I have a heavy cold, and haven't told dh about the car dent yet. Its odd how nowadays I tend to not realise I have a cold (since feeling feverish, achy, ill and sore throats are common for me) till the bunged up gunky stage.

ParsingFancy · 02/05/2013 10:13

Best wishes to all, and we all have as good a day as possible.

Sorry I haven't been emotionally supportive on here. I'm so empty at the moment I don't feel I have much left to give.

On the practical side...

ParsingFancy · 02/05/2013 10:15

Ha. Sorry, name fail!

DameFanny · 02/05/2013 10:22

Hello. Jumping in without reading the thread, which I will do in a bit.

Having a fibro flare, which started before I discovered I've been diagnosed with fibro. Which is odd.

Got into a defeatist state and got signed off work till next week, which is - hurrah - only a 4 day week.

So now I need to somehow work out what's fibro pain and what's hypermobility. And do exercises and that. And work out how to pace. Which isn't me. At all. Gah.

gallifrey · 02/05/2013 10:37

Hi everyone hope you are all ok today xx

I feel totally exhausted today, every part of me aches.
All I did yesterday was go out for the afternoon with my daughter. By the time my DH came home I was almost in tears trying to cook dinner.
He was also knackered because he had been driving for 4 hours back from being up north.
I was a bit pissed off because he stood there saying why are you so knackered then, what have you been doing? Did you go out then? Why is dinner so late? I've been driving for 4 hours I'm more tired than you!!

magso · 02/05/2013 12:54

Ooh Galifrey its so hard when ones nearest and dearest cannot empathise. Dh is understanding except when he is exhausted. Perhaps your dh is the same - as are we all really.Its always a bad combination when we both are ill and shattered - all the logic goes. Dh health seems to have suffered since I became ill- we are regularly late with dinner too.
Dame Fanny welcome (not my thread but as I'm around I'm sure Grockle won't mind) but sorry you are experiencing a flare up.

Weegiemum · 02/05/2013 13:13

I'm totally wiped out today. Lying on sofa with feet up to manage my very swollen ankle. And got to be ok by 4 when the dc get in as dh is on-call tonight so not coming home. Going to have a crappy tea out of the freezer night tonight. But as nail varnish gives him a headache, dd1 (13) is planning to pedicure me tonight!

Fuzz pig I can never remember which mn people are on my Facebook! I'm very likely your friend if you recognise my symptoms, though!

buildingmycorestrength · 02/05/2013 13:45

CBT session was brill. Really good.

Partly because he just GOT IT. He's obviously been working with people with this condition for some time.

He said I'm doing all the right things and I know I am generally coping okay psychologically for the most part, but he suggested tweaks.

Rest before I get tired...it is 'worth more' to my system.

Top up don't catch up...so don't get to the stage where you are running on empty, but keep topping up your 'rest' levels.

So I'm to keep an activity diary (he didn't say I should particularly but I thought it might help) and plan four lots of 30 min rests spaced through the day.

Am also waiting for my brother's genetic test results. Am on tenterhooks...amazingly slow and drawn out process this has been. Sad.

HandDivedRaspberries · 02/05/2013 13:51

building that's fantastic. And Thanks for sharing the advice.

Heh, weegiemum, cunning use of DH-free time. What colour are you going?

Grockle · 02/05/2013 14:07

Not caught up with thread so apologies for missing things. I've been on hospital all morning because of chest pains & racing heart. I am sure they'll come back & say its depression because, well, everything is. Bored.

OP posts:
HandDivedRaspberries · 02/05/2013 14:14

Oh Grockle. ((( )))