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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 Sun 24-Mar-13 20:48:05

Thank you arbitrary.

Grockle please don't feel bad, it's a relief to know I'm not the only one who forgets to do things, YOU DID NOT FUCK UP you forgot something, if anyone can understand about forgetting something it's us, I bet every single one of us forgets at least 10 things a day, I also bet all of us get frustrated with ourselves for forgetting to do things that we do every day.

Please don't feel bad, getting your card really cheered me up it was a lovely thing to do and I am eternally grateful to you for starting this thread because I need you all to get need through this horrible illness.

I can list 100 stupid things I've forgotten to do..........

Last week forgot to shut the rabbit hutch, came down in the morning to a cold wet very grumpy rabbit.

Forgot to pick up my mum's spare key and had to drive a 50min round trip to get them from her at work which I'd past in my way from my house to hers.

Put dp's pain killers on top shelf of medicine cabinet and went to work, Que a frantic dp calling me because he can't stretch and needed his pills

fuzzpig Sun 24-Mar-13 22:00:07

GROCKLE!!! DON'T YOU DARE LEAVE!!! <sternface>

I - we - need you and care about you too much to lose you from here.

If one of us was saying this, you wouldn't be telling us off for forgetting a stamp, would you? Please offer yourself the same courtesy.

You know it is the illness making small things (and it is a very small thing, it's what, 30p!) seem massive, that is what this stupid evil illness does, every bloody thing becomes such a battle. You know this, but the nasty fog of hopelessness is messing it up. When it's not such a bad day you will recognise it, and it won't feel so awful. Promise. thanks

Incidentally, I have forgotten what time my Very Important Meeting is. And haven't prepared for it (ie decided what hours I want) at all. Soooo you aren't the only one to make daft mistakes! blush

buildingmycorestrength Mon 25-Mar-13 07:52:27

My brain is sieve-like. Bad days are soooooo bad. About once a week I have to spend an hour of 'good brain time' when I would normally work, just trying to remember stuff I have to do and making lists.

Tbh, one of the ways I am coping is by not really doing anything optional. Nice cards to friends, baking cakes, popping to the shops, helping at fetes....all off the cards. I just prioritise radically and lots of things don't make the chop. I'm trying to survive. You are too, Grockle, with much less help from others.

Stamps, meh. We know the score.

smilingthroughgrittedteeth Mon 25-Mar-13 08:31:54

It's unanimous grockle you are not going anywhere we all need you grin

I am sat in my lovely private room at the lovely private hospital <yes I'm boasting> and am waiting for my surgery which should be at about 9.30. I am terrified I've been fine until saw the Dr and now I'm so nervous I feel sick.

The thing is Im not worried about the surgery or about them finding anything I'm absolutely terrified that they won't find anything, I can only admit that here because I'm sure you all get it, no one else would understand sad

ArbitraryUsername Mon 25-Mar-13 08:35:44

Oh yes. I understand. I hate any kind of medical testing because I know that it won't find anything. It would be so much easier if they could find 'objective evidence', but why would my body oblige them in revealing it. In my case, objective evidence would mean the NHS would cough up for the stupidly expensive drugs that actually prevent pain rather than just giving me painkillers to alleviate it.

fuzzpig Mon 25-Mar-13 08:39:42

Thinking of you smiling - hope it goes well x

magso Mon 25-Mar-13 09:07:50

Hope surgery goes well smiling. Don't know what you are having done but I know that hope of finding something treatable that can improve life! Are you staying in overnight?
Grockle please stay with us! You've had a tough week. Just letting you know I'm also thinking of you!

belleshell Mon 25-Mar-13 11:09:44

by the time you reat this smiling, im hoping you wont be in too much pain. Grockle.....xxxxxx
Fuzz what did you decided about your hours?

fuzzpig Mon 25-Mar-13 19:38:35

I wrote a long post earlier but my phone died angry

Basically agreed to do 16hrs over 4 days. Not sure exactly when those hours will be.

Getting signed off for another two weeks before that, though, as I am in massive pain/exhaustion at the moment.

magso Mon 25-Mar-13 20:10:50

Well thats a good start Fuzzpig . I don't suppose you will know till you try it if its right for you but 2 weeks off to recover from some of your set back gives it a better chance. Its taken quite a while for me to 'manage' my present reduced hours (less than you but I have a long journey). I'm sure you can increase youe hours in the future should you recover fully.

belleshell Mon 25-Mar-13 20:35:32

Fuzz 16 hours, over 4 days seems fair, and like magso said if you can and want to you may begin to increase in the future.... im teetering on the edge of 30 hours ( full contracted hours) but im dreading it!!! 4 days is do able..

Has anyone heard from Grockle???

How you feeling smiling


fuzzpig Mon 25-Mar-13 20:46:06

I'm not sure, in some ways I think maybe I'll never manage FT - at least not this job, as it is quite physical.

Time is going so quickly ATM, I've lost track of how many weeks I've been off this time - I think it'll be 5 or 6 by the time I go back, which would make it the longest period I've had off.

I am getting a lot of pain in some of the pressure points listed in fibro criteria so am definitely thinking it could be worth pursuing - if only to demonstrate that the pain is often a worse symptom than the fatigue.

I just had a bath with Dead Sea salt, it does help, not a magic cure or anything but it is lovely just to get some respite from the pain. I probably mentioned it before but it's about £7 for 4 bath's worth (1kg) in boots.

Also really looking forward to my electric blanket tonight (last night DH and I both fell asleep downstairs!) - it is amazing how much the heat helps. I think it'll be great for period pain too as a hot water bottle really doesn't cut it.

magso Mon 25-Mar-13 22:38:40

Yes I like my electric blanket. I can only tolerate the lowest setting but it really helps to be warm. I like baths with epsom salts (magnesuin sulphate I think) and have found a pharmacist that sells it quite cheaply in a kg bag.

fuzzpig Mon 25-Mar-13 23:19:55

Thanks magso I only actually bought the Dead Sea stuff because I couldn't remember the name of Epsom salts! I will have a look.

I am also tempted to get a bath mat thing that blows air through it, like a removable jacuzzi/water massage thing. My parents had one that was fab, but it was £1500, I'm looking at cheaper versions though!

ArbitraryUsername Tue 26-Mar-13 08:13:46

We actually have a jacuzzi bath. The previous owners installed it (every single decision they made in the bathroom is very odd) but we've never used it. The pipes need a serious clean.

I tend to have a bath with DS2 before he goes to bed. He loves it and it helps me a bit. I can't put anything in it though, as he has eczema that reacts to everything. So I bath with Star Wars toys and octonauts and other such delights.

I'm going in to work today. Teaching this evening, so I won't be back til late. I have to go in tomorrow too for a meeting with my managers. I tried to avoid the 2 days in a row thing, but they couldn't do any other time. So I will be utterly wrecked by tomorrow night.

magso Tue 26-Mar-13 08:51:46

Yes I have accepted thay I am unlikely to manage FT again - so have set my ambitions much lower!
I hope you manage Arbitrary.- consecutive days are so hard. I wish I could find a way to lessen the post exertional exhaustion thing. Do you stop for Easter soon? I used to bath with Ds but he is much too big now (13). However I have to sit outside the open door to ward off spiders as he is extremely arachnaphobic (and autistic) which is not a very comfortable place to perch, but it is the only way to get him clean. The last time he saw a spider in the bath - (before my guard duties commenced) he ran naked down the stairs screaming in terror and straight out the front door (which we had only just stopped locking)!

Fab41 Tue 26-Mar-13 09:05:06

Can I join in? I found this thread on active this morning. I have fibromyalgia, and have been off work for almost two years. I enjoy lurking on mn, but generally stay quiet.
Struggling a bit just now because I fell downstairs and cracked a rib three weeks ago, and have had to give in and take pain killers to be able to keep moving. The cold weather doesn't help much either!

smilingthroughgrittedteeth Tue 26-Mar-13 09:25:19

Hi fab welcome grin

Hi everyone I am home, I'm sore and tired and it was all for nothing because they didn't find anything sad

I know it's a good thing but I so wanted an answer and haven't stopped crying all morning.

Has anyone heard from grockle?

magso Tue 26-Mar-13 09:37:49

Welcome Fab! Sorry you in the same struggling world as the rest of us. Cracked ribs are so painful you poor thing - on top of everything else! A difficult combination I am sure. Hope you are healing well. Might be worth taking vit D to help your bones as its the end of a long winter of not enough sunshine.

magso Tue 26-Mar-13 09:42:42

Oh Smiling, cross posted with you. I am so sorry they did not find anything to put you on the road to recovery. Take it easy. GAs can make you a bit down until you get the stuff out of your system. It was not totally for nothing - some things have presumably been ruled out - so onward and hopefully upwards. (Hugs)Take care - is someone giving you some TLC?

fuzzpig Tue 26-Mar-13 09:59:39

Oh smiling I'm really sorry. I hope they continue investigating now that more stuff has been ruled out.

Welcome fab! We are a friendly bunch smile and don't worry if you can't post much, lots of people dip in and out. Even reading/posting on a forum can be overwhelmingly exhausting with illnesses like ours.

Sorry about the awkward work days arb. Hope it goes well.

I am trying to decide what is better for me - mon-thurs with 3 days to recover (also meaning DH can always pick up weekend shifts) or spreading it out more. I'm not sure if doing it all in a block will result in a weekly push-crash cycle. Aargh it is all so difficult isn't it! And it looks like management will be creating my timetable anyway, which might include late nights, and I have to still do alternate Saturdays (thankfully DSDs have agreed to babysit if DH is working). And they said I still might have to do early starts if that is what they need me to do (even though I'd really just be one more person among about 5 tidying shelves hmm) although they know the amitryptiline makes it very very difficult. They are going to ask HR about it though. I have a feeling I am going to miss out on some training (that all my same-level colleagues have had) because I am cutting my hours, so I'd say my chance of career progression is now 0. sad

PainForLife Tue 26-Mar-13 12:17:36

hi all,
I'm soooooo tired today I can't even get myself out of bed. every part of my body is hurting sad fab41 I've been off work 3 years now bcos of fibromyalgia so ur not alone.

being a newbie on here I must apologise for not posting often I'm just lurking in the background (mental health issues get in the way most days unfortunately. a day ago I was pretty bad so was smacking my head in the wall so now.of course my head is very sore - sorry for TMI)

grockle from what I've read on here everyone is thinking of you and Ian worried about you so please come back smile

smiling sorry your hospital visit didnt go as u hoped. unfortunately sometimes it takes the professionals years before they work out what the problem is.

hope every1's day goes well smile

ArbitraryUsername Tue 26-Mar-13 22:48:39

Rory they didnt find any answers, smiling. It must be frustrating, but presumably they ruled out some horrible stuff too (which is, at least, something).

It's crap that your bosses are being difficult about organising your shifts, fuzz. I think I would struggle to choose between doing the hours over fewer days or doing shorter days too. It's really hard to judge. Early starts and late nights are not helpful ever. I hope the two weeks off and then reduced hours helps you.

I'm allegedly FT. I do work every day, but I never manage a full day. I seem to spend a ridiculous amount of time getting up, walking around and stretching. And I almost always fall asleep at some point in the afternoon when I work at home. I can't do that when I go in to work (and there's the bloody train journey and the fact that it's harder to go a-wandering every 20 minutes at work) so I'm more useless on the days after I've been in. So, I attempt to work FT and usually fail.

I have to go back in tomorrow. I would really rather not, but I have to. My hips are not going to be happy by tomorrow night. sad They're grumbling right now, which makes it hard to sleep. I'm waiting for some painkillers to kick in and (hopefully) help. On the plus side, I picked up my pay slip for March and I seem to have gotten an increment on my salary scale. I am considering using the extra money to buy first class train tickets instead of standard. It can't make the commuting worse.

Ah. My problems sound so petty in comparison to everyone else's. Sorry guys.

fuzzpig Tue 26-Mar-13 22:58:32

Not petty at all arb!

I am currently in bed lying on my front in the hope that the electric blanket heat will help my ridiculous tummy/hip pain. And for some reason my throat is hurting again. I finished the antibiotics last week and the tonsillitis has gone, but now... GRRRRR.

smilingthroughgrittedteeth Wed 27-Mar-13 09:54:48

Theyve ruled out endometriosis and cysts so it is good news but im so frustrated and sad that I dont have answers, then I feel bad because I shoud be happy, clearly I dont want to have endometriosis but at least id have an answer.

Im in a lot of pain and now my throat hurts, ive just had enough.

Fuzz I work 32 hours over 3 days, I do monday, tuesday and thursday, I struggle on tuesdays but it helps knowing that ive got a day off, I tried working every morning but the afternoons werent enough time to recover, I find having whole days off much easier to cope with, it did take me about 6 weeks to get used to it though so give yourself time to adjust.

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