Spoons! Support thread for CFS, ME & Lupus sufferers

[Grockle]

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.

Spoon Theory here

Are you not terrified that yoga would be overdoing it, though? Just because I would be.

I had been unable to do any sort of exersize so the pilates class I did last week (my first class for quite some time) was a taster class. All floor work. I have lost a lot of flexibility and am very weak but could do some of it (there were harder versions for the fitter). Being mostly on the floor lieing down and not energetic I could just about cope. I hope to go next week as well. I agree I could not do yoga (especially bicram yoga which I have heard is very hard) or anything that needed strength or balance or energy. I have a lot of trouble with my back ceaseing up so want to get more flexible 9whilst in a better phase), but it is not long ago that walking was often beyond me. I hope your weekend is more restful than you fear building. Arbitrary does the exersize help do you think? I stopped research and teaching before I became ill (gradually -because ds has SN) but it has been hard to accept I will never go back to it.
It is confirmed I have PoTs but otherwise my heart is fine - one more thing ticked off. I guess for me walking my snails pace (with a HR of 160) is aerobics!! However cannot treat the tachicardia with betablockers as I have asthma which was brittle for a while. So its salt and lots of water! I have developed a taste for salted chocolate. I wonder if that could count as a health food!
Hope the day off has helped Fuzzpig. It makes me feel tired just thinking about you all working FT.

Yes, building, I am frightened of that! But I also would hope that it might help. I remember how good I used to feel after it. But I also know that I seem to be pullng muscles all the time - just walking the dog to the end of the road hurts my arm and neck for days so I am not sure how my body would cope with Yoga. I need to try it to find out.

I love salted chocolate.

I have to do the yoga, otherwise everything gets much, much worse. It helps to keep my joints moving and by reducing the stiffness helps with the pain. The breathing/relaxation techniques are also useful for that. Worst case scenario with my condition is that the bones in my spine (and possibly) elsewhere will fuse together and then I really won't be able to move them ever again. So I just have to find time/energy for yoga. It also helps to strengthen my core muscles and support my back and pelvis. I dread to think how painful it would be otherwise.

I'm actually supposed to do 4 hours of cardio each week as well as yoga/pilates but I just can't do it. I drag myself to yoga most of the time and feel exhausted afterwards but I do need to go. Sometimes I can't. Sometimes I just have to lie down and try to pretend it doesn't hurt (problem is not moving makes it hurt more). It's a bit of a vicious cycle thing: tired because I'm sore, resting makes me more sore so I end up more tired and have to rest more and so on.

So I do the yoga, and pilates, and just accept that it means I have less energy for other stuff. Depending on how bad I am inflammation/pain wise, I can actually bend quite a lot. And after all my tramadol related weight loss I look really quite fit and healthy to the untrained eye, particularly as I often seem to have rosy cheeks for no reason (it's more a rash than anything else). Look closely and the dark circles under my eyes give it away though. Or see me at home when I am completely useless and have to crawl up the stairs and stuff.

At least some of my lower back pain is caused by my hypermobility. I have no core strength which puts a lot of strain on my spine. Pilates was meant to help with that but I got too ill to continue pilates. I think it would have helped flatten my tummy too.

Also the breathing bits of yoga are useful because my ribcage becomes very stiff and painful, which makes breathing much harder. So I'm supposed to do daily breathing exercises to expand my rib cage and keep everything moving as properly as I can get it to.

It really eats into my day though, especially as the middle of the day is the best time for me to exercise (I'm stiffer and have more pain morning and evening). But I don't really see what else I can do.

Haha. Yes, it probably would have. Since Christmas I have accidentally gotten a very flat tummy. I still have little appetite so I'm still losing weight. It's not a good thing.

Have you lost your apetite because of the tramadol?

Ah, crawling up the stairs... I did that this evening! Being off work seems to have made everything in my body crash. It's so weird, and I wonder if I'd feel the same if I had forced myself to go in. It's almost like I've given myself permission to crash.

Magso, good news (well sort of) about the POTS dx. Although people are more aware of ME than POTS, I've found it easier to explain the latter and people seem to understand it better than they do ME. I feel that is worse than the CFS a lot of the time - I really cannot tolerate standing for many minutes, and on a bad day today it's a limit of about ten seconds. :( I am pretty certain I want to try and get a referral to a POTS specialist. Although the advice I got from my CFS specialist has helped (the salt etc) it is an illness in its own right and if I can get any more help for it I will try!

I'd quite like to try Pilates or yoga. I have a stretching DVD from the hospital which I haven't got around to yet .

My day off has been rubbish, I've just been on the sofa playing on my phone and watching DVDs, but I do feel it is better than forcing myself through yet another day at work. Hospital group tomorrow so I should really be in bed.

Grockle: maybe have a look at the specialised yoga for back pain programme. It's designed for people with arthritis (and with the expectation of low mobility, high pain, exhaustion and general illness, one would assume). There might be a class near you.

Yes, initially. I couldn't eat anything while taking it. Mostly I vomited a lot, and otherwise wasn't keen on eating. I haven't taken it for a fortnight now though (the GP gave me acupan instead, as it was clear that I wasn't going to be able to tolerate the tramadol) but I'm still not hungry much and can't eat very much when I am. It's hard to tell though because before that I was on amitriptyline, which does increase appetite and makes you crave sugary crap.

I saw my lovely psych today who suggested I apply for DLA! I told him I had & had just been refused & he said that I must appeal & that he'd write a letter to support me because people with Fibro/ CFS/ Lupus etc tend to be severely disabled at times and have to make big sacrifices in their lives in order to be well so are in great need of DLA.

I crave sugary crap. I never thought to blame the amitripyline. My dr suggested upping the dose to 100mg but I really don't want to. I am not convinced it helps.

Thanks for the link. Of course, I live in a county with no trainers but I will read more it.

Had planned a weekend away with children and husband with a kids group we are involved with...but am not well enough to go. Hubby taking kids so I will be on my own all weekend trying not to freak out,

Will have to adopt holiday mindset and watch movies.

Doesn't suck as much as some of your situations but am most annoyed! and sad.

I tried to go from 50 to 75mg and couldn't cope with the dry mouth any longer. It was horrifically, painfully dry. And 50mg wasn't doing much at all for me. It definitely gave me sugar cravings. I've never had an enormously 'sweet tooth' but amitriptyline just made me want to eat sugary crap all the time. It increases your appetite generally too.

That's crap buildingmycorestrength. I can understand why you're disappointed. Maybe watch the sort of movies you only ever get to watch alone, so at least it feels like there was some purpose to being on your own.

Oh no, building, so sorry. I hope you can make the most of the peace and rest.

The dry mouth thing is horrible. I've never experienced anything like it before. I might see about taking less amitriptyline and see how it effects the pain/ sleep/ dry mouth/ eating crap things.

Hope everyone has a spoon-filled weekend.

Hi everyone I'm wide awake so thought I'd catch up with what I've missed on here, it seems like everyone is having a bit of a crap time

I'm having a bit of a relapse, I think looking after dp for the past few weeks has caught up with me. My legs and arms are sore and I feel nauseous all the time, my throat hurts and I'm snappy and irritable, I'm exhausted I feel like I'm running on about 5 spoons.

Dp is being snappy because he's in pain and fed up of being unable to do anything and last night we had an argument over something stupid and now I can't sleep.

I feel so selfish because everytime he complains about being stuck in the house or because he hurts I want to shout at him " it's been 5 weeks and will be better soon how do you think I feel after all this time with no end in sight"

I know it's because I'm tired but I'm finding his attitude to being injured really irritating and having him home 24/7 is starting to grate especially since he seems to think it's ok to shout at me when hes feeling frustrated, my lovely caring dp has been replaced with a grumpy, stroppy child and I'm trying really hard to be understanding but I'm about ready to pack my bags and leave.

smiling, that sucks! I find it really hard to know how to communicate with my husband about it. I feel like I'm so booooring....don't want to complain, etc. Surely it is normal if you have a chronic condition...to get fucked off about it, and want a moan? But who wants to talk about that all the time?

After he had an infection recently I got very snippy, for reasons you can probably guess. If I've learned anything from this it is that life goes on, the dishes still need sorting even if you feel like death. So man up already!

Smiling, so sorry. It's awful when one of you is ill but when it's both of you, it's worse.

I try not to moan about feeling crap all the time and save it for here. People as how I am and I sort of sigh & say I'm ok because they don't really want to know how shit I feel.

I'm on the verge of tears. My house is a shit tip & I can't clean it. I need to take DS to a shop & I can't face shops. I'm tired & sad & don't understand how my life ended up like this. Really, really struggling, emotionally, mentally & physically

Oh, grockle. Big hug from me.

It is all very hard.

Any friend that could nip out for you? I made ,myself a written list of people I can call on because it is soooo hard to think when it all gets too much.

Thanks - I took him. It just all seems so hard. I don't want the rest of my life to be like this. I don't know what to do.

I know, that is the terrifying thing.

But it does go in phases, doesn't it. Not every day is this bad.

I do find myself wishing for weekend school though...

I don't know. I just wish I'd died before. I can't stop thinking about the peace I'd have if I died. Now I'm stuck in this hellish situation where I have to be here for DS but I'm useless & hurt & want to cry & wish I weren't alive. Then I feel selfish & pathetic. I don't know. I wish I could fall under a bus.

Sorry. I know everyone else is feeling crappy too. Love to everyone.

((Hugs)) Grockle