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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

Grockle Mon 11-Feb-13 13:46:46

When I count spoons, I use mine for much smaller activities when I am really poorly:
getting out of bed = 1 spoon
walking/ crawling to the bathroom = 1 spoon
Climbing into the bat = 1 etc

When I am better I suppose each activity takes fewer spoons. So ironing today took 1, taking DS to the childminder was another.

And crying seems to use a lot... I don't know what's wrong with me - I just can't stop. Maybe my weight loss is through tears.

The snow looks really pretty.

fuzzpig Mon 11-Feb-13 13:53:12

I've not really counted my spoons yet. It's a good idea though. I was thinking of printing out the spoon theory and getting copies for everyone in my group (wasn't sure if the leaders might be a bit hmm though!)

I don't know how to count my spoons because it varies by the day - not just how many spoons I start off with, but how many spoons a certain thing takes IYSWIM? If I'm ok, I can get showered and dressed without even realising it, but on a bad day it takes a lot of work and would therefore be a spoon or two. If that makes sense. Maybe I'm overthinking it blush

I'm glad you're off today grockle. I'm sure they will understand as you collapsed recently! I really wanted to be off and in fact I nearly fell over while serving a customer blush - just got all dizzy, but I think it was low blood sugar as I feel a little better having had lunch. In terms of deciding whether I should be off - apart from the two separate months I've had off, where I had relapses following chest infections, I basically wait until I get a 'real' illness. So, a virus, gastro etc. I get ill a lot, my immune system is shit. I wish I didn't do it like that though - I want to be brave enough to say "my CFS symptoms are bad today". TBH I really wish I'd stayed off since last summer because now people expect me to be able to work all the time.

My DSDs are staying which is really lovely - they are doing their work experience at DCs' school/nursery! It is going to be a tough week though as our tiny 2 bed house is bursting at the seams and I don't get to flake out quite so much.

5 more hours at work to go <wail> sad

Grockle Mon 11-Feb-13 14:08:25

Fuzz, I am envious of your house, crammed full of DC. I love having everybody here but it is hard when it's a squeeze & you have to keep going and going.

Hope the rest of your day passes quickly.

garlicblocks Mon 11-Feb-13 14:13:56

I only get 1 to 4 spoons a day. Sometimes none angry sad Have been sleeping 14 hours a day for the past few days, trying to build up extra for today, but I've already used 2 - showered and did some work (and some MNing) - and am now going to have to magic another from somewhere, to be used excusing myself for the filthy house! I need to get in a calm zone and stay in it.

Grockle, I don't know how you do it. I'm a bit worried for you; so glad you stayed home today.

Lots of your posts have filled me with awe ... you do all THAT???!!! But comparison is unhelpful, so I'll just be impressed in a detached, Zenny sort of way wink

Thingiebob Mon 11-Feb-13 14:57:36

Can I join the thread? I know all about spoon theory. I don't have the illness listed in your thread title but I have Sarcoidosis. My consultant thinks I have had it for a very long time but it was only diagnosed back in 2006.

I am currently pregnant so that actually helps reduce my symptoms but I still get aches and pains and get totally wiped out. I have a toddler as well. Me and DH manage quite well until I have a massive flare up and then I feel terribly guilty that my DD is not getting the attention she deserves and that Mummy is lying on the bed offering to do 'quiet' activities with her like puzzles or computer games. It takes meds to get it under control and then I am able to look after her properly and go out to the park with her etc.

belleshell Mon 11-Feb-13 15:03:12

Fuzz my spoons alter a bit too, if i have pain or my lead suit on everyhting uses double spoons, but as im ok atm i have all 11 spoons, the spoon i lost after my last crash was used to work a longer work day IYSWIM, but now im left with 11 i have to work less hours but more days, oh the joy of pacing.........i do have to say i havent yet managed the extra day yet, i use every excuse in the book, atm i am using AL to make my working week 4 days not 5, but that all ends soon, im dreading 5 days, on my day off i use those sppons to do bits around the house...

Grockle, even if you were well, a break up would be very emotional, and use up alot of reserve, please dont be hard on yourself, i wish i was closer just to give you a proper hug, and a good talking to.....

you needtime off, proper time off where you dont feel guilty for been off, are young careres doing anything in half term that D could go to...

your body isnt going to cope much longer let alone your psychi... and then what will happen, who will look after D and the dog, when u CANT!!

please dont think im been harsh i am very concerned..

(((((((((((((((((((((((((((((XXXXXXXXXXXXXXXXXXXX))))))))))))))))))))))))))))))

fuzzpig Mon 11-Feb-13 16:20:11

Welcome thingiebob thanks pull up a comfy chair! I don't think anyone here is really hung up on exactly what illness everyone has, since we all share a lot of symptoms and struggles.

Am on my afternoon break now, 2.5hrs left after that, and a horrible journey home as I have to wait ages for the bus. Thankfully I'm on a half day tomorrow, but I do get jealous of my colleagues who often do something nice on their mornings/afternoons off when I have to spend mine just recovering sad angry

Grockle Mon 11-Feb-13 16:34:04

Hi thingie, so sorry you have to be here but welcome. Congrats on being pregnant - I'm glad it helps your symptoms!

I don't know how I do it either...I'm running on empty & have been for a while. I'm not usually one to sit around doing nothing or to ask for help so I've been trying to get by the only way I know how.

All I've managed today is a phone call, a bath and a small pile of ironing (emergency) and now some pancakes but DS made & ate those with little help. I don't want to work tomorrow because it is so full on. If I had an office job where I didn't have to talk much, I'd be ok but I just don't want to go.

No young carers at half-term for DS. We're going to London with my mum and I'm dreading it. 3 nights away...I don't want to go. And she'll ask how DP is & I really can't bare to talk about it to anyone yet.

Thank you for being lovely.

fuzzpig Mon 11-Feb-13 19:20:10

Aww grockle, I don't know how you do it either, your job is so intense! I actually really wanted to be a teacher, was thinking of doing a PGCE after graduating (graduating? Ha sad) but I know it will just be wrong for me. Can't think about the future now really - we have to get through the now!

I manage at work by taking it slower, because my job allows for it and my manager did say I should. I was always the one getting things done super fast (though properly) and asking What's Next? But now I'm pacing myself and letting myself take longer especially if it's a task where I'm seated. I hate that I have to do that.

Will you be in central London? I'm going through Victoria on Fridays for 6 more weeks. I really love London but there's no way I could live there, it's too crowded, fast and trafficky! I'm quite pleased that as I have to go in peak time anyway (£36 for a travel card!) I can go very early to allow myself plenty of time, and have a rest at the station before getting the tube. It's quite surreal watching all the commuters rush past.

Grockle Mon 11-Feb-13 20:41:48

I manage because I have to, I suppose. My job is different to mainstream teaching because the needs of the kids are so different. So, if it's a really bad day, I can let them play with the toys a bit longer (because their goals will be to use small world toys appropriately or something). My team are supportive (1 also has fibro so off a lot too) & management are quite supportive too. It's just that I have to be aware all the time or I get bitten or lose a chunk of hair and if a child runs, I have to run after them, which I'm not good at atm. Funny, I always wanted to work in a library but I bet it's not the calm peaceful job I envisage.

We will be in centrral London but Sun - Weds so we'll miss you. Shame, we could have had a coffee or something. I love not being a commuter & watching them rush past while I take life a bit slower.

I was going to do a PGCE (in early years teaching) but decided to do a PhD instead. I would really enjoy teaching reception but I don't think I'd cope very well with it. I struggle enough with working in a university where no one expects me to squat down and be on my feet all day every day. Teaching is tough!

I saw the GP this afternoon. I've got another 2 weeks off work and more painkillers (this time acupan). I know have 4 different classes of painkillers that I can take everyday. The theory is that I might tolerate this better than tramadol and it will mean I won't need to take it anymore or at least only have to take it when things are dire. Here's hoping. Googling tells me that it often turns your urine pink, so that would be fun as a side effect.

The GP doesn't really have any advice really about the exhaustion though. I always end up in tears in the GP office (something about having to list all my problems and ask for sick lines just seems to set me off, and now I start welling up in the waiting room purely because I don't want to cry once I get there and then there are lots of tears). As a result of this, my GP is itching to diagnose me with depression (I think because he can do something to help that more than anythng else). I really don't think I am depressed though. I'm just exhausted and in pain.

I dragged myself to my yoga class tonight where I was utterly crap at everything. I've got no strength and everything is painful. The little snooze at relaxation time was nice though.

Grockle Mon 11-Feb-13 22:13:47

Arbitrary, my GP was adamant that I had depression. I knew that I didn't. It took a referral to a psychiatrist to get the right diagnosis so was actually really helpful in the end. I could just have done without the months and months of trying various ADs & them not ever helping, despite having been a godsend when I was depressed in the past.

Luckily he doesn't seem to want to push it on me. He knows that i am in lots of pain and I'm already under rheumatologist care. I was taking amitrylptiline for pain relief for months but it did little to nothing so my rheumy took me off it (and decided on the tramadol that floored me recently), so the GP is aware that this didn't do anything much for my mood.

It would help if I'd stop crying every time I see the GP! It's now got to the point where I know it's going to happen but I can't stop it. So I sit there wiping tears away with a tissue and explaining that I am not actually upset about anything, I just get teary when I'm tired and in pain (like a toddler!). I can absolutely understand why irrational crying rings the depression alarm bells for the GP, but I am pretty sure that I'm not depressed. If I woke up tomorrow with no pain and the levels of energy I used to take for granted, I'd be completely fine.

garlicblocks Mon 11-Feb-13 23:28:46

Weird - I don't cry and I am depressed! Have completely given up on trying to figure out the depression/CFs <-> egg/chicken conundrum and, given the resounding lack of knowledge about ME/CFS/etc, reckon it might not matter that much. I was sent for diagnosis by a psychiatrist, too, Grockle. Apparently it's still the most route of referral - which goes to prove the only members of the medical profession who don't think it's all in our heads are the psychiatrists! confused and hmm

Last autumn I told my GP "never mind what it is, let's address the worst of the symptoms". This has resulted in a flurry of referrals, which is nice and helpful, but to my mind proves they had me down as a hopeless whiner, all in her head angry I recently realised they haven't even tested for things like MS or various family cancers, and have only done the superficial tests for diabetes and thyroid. I'm really crap at being 'entitled' on a good day; I don't have those any more so finding the energy to insist on increased medical effort is mostly beyond me!

I'm feeling very GRRR about politics (today we lost the right to a fair & open trial) and my continued ishoos with the DWP and council. I actually think I have good reason to be depressed sad

So, have just dumped it all on you lovely women and am sure you could all do without other people's moaning blush
Sorry! thanks thanks thanks thanks thanks thanks

Grockle Mon 11-Feb-13 23:44:46

Your GP sounds nice, Arb.

Interesting garlic! I was made to feel like a hypochondriac and that I was imagining all the pain. I spent a lot of time questionning myself. It was such a relief when my psych actually listened & was sensible and supportive. Fighting for tests & stuff is a nightmare when you feel so unwell.

So sorry you have so much going on. Money problems are rubbish & you really don't need the stress of everything that you are dealing with on top of not feeling well. Feel free to moan on here, that's what the thread is for. And goodness knows I moan a lot grin

I was wondering what meds do you all take? And what works for you?

I take Tramadol which I don't think helps. Maybe a little but I'm still in pain. And I take Amitriptyline at night to help me fall asleep. It works for that but I still wake up a million times.

garlicblocks Mon 11-Feb-13 23:58:49

Thank you, Grockle smile You don't moan enough imo!!! Self-compassion, v. important!

I have a good tolerance of pain so am only using OTC stuffs. Despite knowing what's happening these days, I'm fairly poor at managing my energies. I think I'm doing okay-ish, then suddenly start being unable to stand up vertically, hurting like fuck. No change since my so-called "well" years in the beginning, then, except that it now takes a few hours instead of days. Hrmph! I'm on a very high dose of Venlafaxine, which has been shown to be analgesic (another thing my GP didn't know). I've an affinity for opiates blush so would rather sacrifice time to sleeping than get prescription pain meds ... or would I? ... [devil] [devil] !

It is quite funny that psychiatrists are the ones that take the physical symptoms of ME/CFS most seriously. Or it would be if it didn't make the whole diagnosis and treatment process so much more difficult.

I've got: naproxen, paracetamol, tramadol and now acupan.

The naproxen helps with the stiffness mostly but doesn't do much pain wise. And the paracetamol isn't hugely effective (but is useful for taking between doses of anything else).

I hate the tramadol. I don't find it enormously effective for pain. I think it actually causes me neck pain. I do find that it makes me feel generally bad and destroys my apetite (I have lost loads of weight since being prescribed it), so I try to avoid taking it unless I'm in agony. I didn't take any tonight though (took the acupan instead) but I've now woken up and can't get back to sleep. I don't generally suffer from insomnia (I get woken up by pain but can usually get back to sleep within a reasonable time frame, once I find a comfortable enough position to lie in). An unwelcome development, hopefully not something that'll happen again.

I took amitriptyline for about 6 months. Initially it helped to make me sleepy but stopped doing that even with increasing the dose. My GP tried to take me up to 75mg but the dry mouth was just too much to cope with, so the rheumy decided not to bother with it any more.

I think it's much easier when your doctors recognise that there is pain. All the doctors I saw as a teenager could never figure out what was wrong with me (partly because I wasn't able to describe the symptoms in a way that made sense to them and partly because spondyloarthritis presents differently in children, with knees pain rather than back pain).

This time around the rheumatologist was pretty certain it was arthritis and proceeded from there. It took a long time (and much nagging from DH who visits the GP for anything and everything) for me to go back to my GP about the pain because of my experience as a teenager.

I'd've just believed anyone that decided it was all in my head (because the experience of lots of investigation and no diagnosis really does make you feel like a fraud). However, having had problems as a teenager meant I got a rheumatology referral straight away.

smilingthroughgrittedteeth Tue 12-Feb-13 08:26:23

My GP is amazing and is convinced its an endocrine issue unfortunately the endocrinologist doesn't agree so GP keeps sending me back and endocrinologist keeps trying to discharge me.

My gynecologist is convinced it's endometriosis and I also think it's some kind if gynea issue.

I don't seem to suffer with the same level of pain as most if you, the pain is only when I've pushed myself to much and am
really really exhausted, on a daily basis I just ache. When the pain is bad I take diclofenac.

I cry a lot too, I get tired and weepy and burst into tears at the smallest thing, I never used to cry.

The endocrinologist tried to diagnose me with depression but fortunately my gp agreed with me that I'm not I'm just tired, frustrated and in pain, why do so many drs instantly assume your depressed?

Grockle Tue 12-Feb-13 11:24:45

Morning all. I'm not in work, again! I feel so tired & woozy & kind of dizzy. Pain wise, I'm a bit better so have done some tidying & feel a bit better about the state of the house. I could do with someone hoovering for me. I don't really have many close friends here so I find it hard to ask anyone for help.

If you have any history of depression, all medics seem to attribute everything to that. And if you haven't had it in the past, I think it's easier to say it's probably depression than actually think about what else it could be. I don't know, I'm not a dr so I shouldn't really judge but when I collapsed last year and was in A&E, they were concerned and doing all sorts of things until they read my notes...then they sent the duty psych down to talk to me. I didn't collapse because I was depressed hmm

I hate the dry mouth with amitriptyline... I never used to cry either.

Hope everyone has a spoon filled day.

Having a shocking day here. DH came home after dropping the kids off to tell me he wants to split up. I'm devastated and everything is a mess (horribly complex logistics). I'm so glad I don't have to go to work for at least 2 weeks.

Grockle Tue 12-Feb-13 12:15:46

Oh, arbitrary, I'm so sorry. You know I'm going through similar so I sympathise. If I can do anything at all, please let me know. I'm sure you're in shock right now. Did he explain why?

garlicblocks Tue 12-Feb-13 12:18:38

Arbitrary, I'm so sorry. Start a relationships thread. Go to your GP for more time off (they routinely sign people off for relationship breakdown). Make sure you eat and rest. Have a hug from me ((( thanks )))

smilingthroughgrittedteeth Tue 12-Feb-13 13:14:48

Arbitrary I'm sorry, do you have anyone in
rl to talk to and help you?

Big hugs from need too x

fuzzpig Tue 12-Feb-13 13:15:23

Oh no arbitrary sad I'm really sorry. Sending you spoons xxx

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