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Spoons! Support thread for CFS, ME & Lupus sufferers

937 replies

Grockle · 24/12/2012 23:30

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.

Xmas Smile

Spoon Theory here

OP posts:
Grockle · 05/02/2013 19:39

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.

OP posts:
buildingmycorestrength · 05/02/2013 20:31

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 · 05/02/2013 20:44

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.

OP posts:
buildingmycorestrength · 05/02/2013 21:20

Don't worry, assumed you were just being protective of your lovely helpful thread. Smile

fuzzpig · 05/02/2013 21:27

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 :o

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 · 05/02/2013 23:23

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 · 06/02/2013 10:09

smiling, that sucks. I know the lead feeling. Scary, isn't it. Hope you feel better soon.

Oh, and have a spoon --()

fuzzpig · 06/02/2013 10:40

Sorry you feel so shit smiling :(

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 · 06/02/2013 16:53

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 · 06/02/2013 19:26

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 · 06/02/2013 20:01

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.

ArbitraryUsername · 06/02/2013 20:02

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 · 06/02/2013 20:03

Salary I mean. Spelling gone to pot again!

magso · 06/02/2013 20:11

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.

ArbitraryUsername · 06/02/2013 20:24

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 · 06/02/2013 21:32

No I would imagine only the well and fit could!

garlicblocks · 06/02/2013 23:50

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 · 07/02/2013 00:25

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?

OP posts:
fuzzpig · 07/02/2013 07:53

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 · 07/02/2013 10:59

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 · 07/02/2013 12:17

Do you have a blue badge magso? (I'm not bothering as we don't drive)

magso · 07/02/2013 13:41

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!

ArbitraryUsername · 07/02/2013 13:59

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 · 07/02/2013 15:37

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.

OP posts:
ArbitraryUsername · 07/02/2013 15:54

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.