Spoons! Support thread for CFS, ME & Lupus sufferers

[Grockle]

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.

Spoon Theory here

And now I can't sleep

jesscfs.blogspot.co.uk/2013/02/am-i-tired-well-no-not-really.html

"Tiredness is very different from the fatigue of CFS, I can't really describe it. It's not just the severity that's different- the 2 are qualitatively different. Tiredness after a busy day can be a pleasant tiredness, an easier-to-sleep tiredness, a job-well-done tiredness, whereas CFS fatigue is never pleasant. It's really hard to describe but it feels much heavier, much foggier, more dense. It's more like when you're ill with flu and everything is such an effort and you feel weak and sore and exhausted- it's that ill exhaustion, but even that doesn't feel the same."

Grockle, how is today? I've found the weird sleep patterns to be awful. So tired but no sleep...and never really had insomnia in my life, just the odd anxious night.

Have found Valerian helps, it is in those OTC sleep aids.

Am very dizzy ATM which is new. and bad.

Hope you got to sleep eventually Grockle. Sorry I had no words of wisdom last night, but I felt similar at times especially at first.
Building how are you now? I get dizzy quite often but that dreadful dizzy swirling nausia thing is horrid. Hope it goes as quickly as it arrived.

Kate, I had that conversation with my psych on Friday... that I'm exhausted. He asked if thought that if I slept properly would help & I said no - it's not like a sleepy tired, it's tired in my body, in my bones. I sleep as well now as I ever have, which isn't great but could be a lot worse.

Dizziness is horrible, building, I sympathise. Hope everyone is ok today.

Hi all, i have been watching from afar but my DS kidnapped my laptop and i cant post from my phone ( i dont know how to) Grockle you have had so much to put up with lately, and constant fatique makes everything worse..... I for one are glad you didnt die ( i didnt know you nearly had :( ) but i too have felt sometimes id be better off away from everyone i know because i feel a burden. I hope you all can find some kind of answers to the difficult times you are all having....life is shit then we die!!!!!

My DS is going throu a really toughtime atm and is finding his dad and fiance harder and harder to tolerate, once again ive asked him to come live here, but he says no...he did however come here for the weekend, last minute thing and it was lovely, i just wish he was here full time..

I get fed up with the tiredness comments. What parent isn't tired! It is not the same. It's not tired in feel really, I don't feel well. I think people think I am just a bit sleepy or something.

Grockle, sounds like things are really harsh just now, try and be gentle with yourself.

I'm glad you had a lovely weekend with DS, Belle. Maybe one day? At least he knows you are there, that he is more than welcome & that he always has somewhere to go if he wants to.

No-one understands the tired thing. There should be another word for the type of tiredness we feel. Exhausted, worn out, shattered.... they don't even cover it.

Can't believe it is Sunday night again. What do I have to do to get a break from work?

Grockle honey you sound easily ill enough to go off sick, do it if that's what you need.

Easier said than done though I know. I am unsure about tomorrow myself although I'm in a lot of pain.

Been lurking the last few days as I'm wiped out - Friday session at the hospital was great although emotionally draining, and three of us attended a CFS information afternoon after that.

I was thinking about the word 'tired' myself - I use it too much I think because if someone at work asks how I am I usually (barring 2 people I really trust) say 'just tired' but I know it's the wrong word - but they don't really want to hear a true description.

Also I was thinking that on the times I say "I'm ok" because I'm having a relatively good day, I still shouldn't say "I'm ok" because I'm not! Our version of "ok" is like a normal person's exhausted/ill, right?

Anyway typing on my phone is making my arms/hands hurt so goodnight all xxx

Well I phoned up sick, said I was in a lot of pain and got the reaction "what do you mean, a lot of pain" they know ME causes pain because I have told them, is it that hard to grasp the concept?!

I got on really well with my line manager before I got sick :( maybe I should talk to the overall manager about it. She is off all week :( but she understands when I say I am too unwell to come in and doesn't make me explain it further. It makes me want to go in tomorrow even though I'm not up to it, because having to defend myself is so humiliating I am now in tears :(

((Fuzpig)) If you are too unwell to work, you are too unwell! Perhaps the manager (by asking what you meant) was trying to work out how long you might be off for, or fearing you had an additional illness but it came across unsympathetic. I know I have come across unsympathetic when child carers have phoned in ill and my brain is already trying to think of cover!!
My knees and hips are playing up more than usual after the gentle pilates last week, but my back is less painful so I may go again but just avoid anything that upsets my knees!

I was trying to explain what I mean by tired to my mum a few days ago, she is of
the everyone who works is tired so just get on with it frame of mind

I was trying to think of a better word but there isn't one, dp always says I'm like a toy that's battery has run out one minute I'm working the next I'm not.

I have hidden how unwell I've felt for the past couple if weeks but it's getting harder to, today I look ill, I'm pale and look exhausted, my eyes are black holes in my head, I know this because everyone's told me, every mum I saw at the school, dp, the Tesco delivery driver and my boss all felt the need to tell me I look tired, I don't know whether to cry with relief that I look ill enough for people to believe me or to scream with frustration that I have to get to this point before people notice.

Also why do they feel the need to comment, telling me I look tired and I'll does not help it just makes me feel even worse. my boss has arranged cover for tomorrow afternoon so I can finish early so I know I must look really unwell.

I'm trying hard not to phone in sick as its only 3 weeks till my operation then I'll be off for 2.5 weeks but it's so hard to keep pushing myself, every little thing takes more energy than I have, I sobbed whilst brushing my teeth this morning and I haven't felt like that for months. I can cope with the pain and nausea and bleeding gums and sore ears etc etc etc BUT I can not handle this bone deep, foggy, word slurring exhaustion!!!!!!!!!!

I'm so sorry to hear that you're all having a really horrific time. It's absolutely dreadful when you're almost looking forward to an operation because it will give you 2.5 weeks off work (which feel more 'legitimate' because they're for immediately obvious to everyone medical issues). I'm glad your boss has arranged some cover for you, smiling.

Grockle: I'm also glad you didn't die. It is so hard to be positive when every day is painful and exhausting. And, yes, the language available just does not cover it. It is impossible to explain to people quite what you mean when you complain of fatigue, or how relentless it is.

Fuzzpig: I'm sorry your manager is being so difficult. I'm not sure that people really get what your talking about with chronic pain either. When you live with pain every single day you don't mention that to people, so when you have to complain of pain, it's usually really bad. I sometimes struggle to get DH to understand that I'm talking about the sort of pain that makes it impossible to sleep or even sit comfortably (or do anything) even though you've taken all the (very strong) painkillers you have at your disposal. And most people don't have as many painkillers at their disposal as I do!

The last GP I saw (not my actual GP) felt the need to remind me that I will always have pain and the painkillers are supposed to manage it so that I can get on with my life. I don't think people realise quite how low your threshold for quality of life gets. Or that you don't expect to ever wake up and have a totally pain free day ever again. I would love to wake up and not have any pain at all.

I've just spoken to one of the deputy head's in my department (as the HoD is away ATM). She was lovely. Really supportive. She made some tentative suggestions but said I didn't have to commit to anything until after I've spoken to Occ health. It looks like their desired course of action is to phase my workload back in gradually (rather than to phase in days), beginning with tasks that require no contact with students. That sounds like something I can manage, and will minimise time spent on trains. I'm glad they're being flexible. Although I suspect employers often start out flexible but become less so as it becomes more obvious that you aren't just going to recover and one day be bouncing around pain free and full of energy.

It sounds positive Arb, hopefully that phasing in schedule will work well for you.

Thanks for the kind words all. Actually feel a bit better having had my scheduled phonecall from occ health today. It was a tiring phonecall, but she said she is going to recommend reduced hours and tell them that the expectation of no absence is unrealistic due to my condition.

I just hate that some people don't get it (to clarify, the general manager is quite understanding, it's my line manager (one below general manager if that makes sense) who seems to have given up on me). It is so frustrating trying to explain when due to the condition you are already fucking exhausted and can't be very articulate.

A colleague was discussing reducing my hours the other day, I mentioned the fact that I have no life outside work and she said "that's FT work for you" - she said it sympathetically, she works PT, but it was frustrating because she didn't understand the seriousness of "no life" - I don't mean 'too tired to go out every Friday and Saturday night' etc, I mean literally cannot open my eyes or mouth enough to read my kids a bedtime story.

Smiling sending u some hugs (((((((((((((((((((xxx))))))))))))))))))). im with u the pain i put up with, the indescribable exhaustion kills me, today i got up with dd for school, got back into bed for an hour, got up again to go meet a friend but rang and cancelled....im now still in bed, my head feeels like its too heavy for my body.... i only have 3 more mondays off work before im back to my 30 hours, i had alsorts planned for today, including catch up with friends.instead my annual leave is spent on bed!!!

I love my job, but how the hell i will manage 30 hours is beyhond me.. oh well one day at a time, this time tomoz i will be on my way home after working my shift.....

Fuzz heres a hug for you too ((((((((((((((((((((((((((((xxx)))))))))))))))))))))))) its shocking that we are afraid to say how we feel.....

Grockle hope tyoday wasnt too bad

and to the rest of you

Spoons

xx

Erm....can i join you all please??
Im a longtime regular on MN cant believe ive only just found this thread. Plus ive recently been shown 'the spoons' how strange!

Occ health have just called and rescheduled my appointment for next week. Oh well.

Hello justtired.

welcome justtired!! wish i was just tired too

Welcome justtired. Do you have CFS? (Not that it's an entry requirement :o)

Hi justtired welcome to the thread

Ah thanks everyone!

Yes I do have CFS, i had it originally 10yrs ago after a bad bout of glandular fever. Over the years ive not had it too bad just spells of symptoms but pretty manageable.

Since about last September its been gradually getting worse and worse. I broke down to my doctor in Dec and am now waiting to go and see and M.E specialist at the hospital (didnt know these existed) so hopefully get some help then.

Just wanted to talk to people in a similar position as RL people dont really get it! X

JT your right people in RL dont get it! the ME specialist are scattered all over the country, and basically help with pacing and symptom management. I know fuzz is attending clinics currently and appears to be gaining from the course (i hope thats right fuzz). where in the country are you ( you dont have to say if you prefer not!!) we are all spread all over the country, so all have different experience from the health service provision. Did something happen in sept that caused you to crash? do you work? if so how are you finding it? oooo sorry so many questions ill stop...SORRY

today i feel my head is going to explode, ive just got up because DD is starving!!!! and wants tea now...... she will have to wait DP is out with his DD and we (they i think i might throw up if i eat today) dont have tea till after 7...i have offered her fruit, yoghurts etc but they are rank!!! oh and now she is off to live with her dad!!!! dont you love days like this!!!!!

Yes just wanted to say I am definitely benefiting from the help I'm getting (at st barts hospital in London) - it is group sessions at the moment where we do a mix of cognitive behavioural therapy/mindfulness and acceptance/graded exercise therapy. It's not a magic wand and the sessions are tiring, but it is great especially to meet more people with it. CFS is SO isolating - I really don't know how people cope if they don't use wonderful threads like this!

Anyway when the group course is finished I will then be getting individual CBT to work through some issues from childhood which have shaped me so much that it made me vulnerable to CFS (abuse --> anxiety/poor stress response etc) and I hope that I will start doing GET properly soon especially if my hours are reduced.

belleshell - No worries about all the questions, its nice that someone wants to know tbh. The specialist is at Bristol Frenchay, its an initial one to one consultant where I talk through day to day life etc. then I think a course of action will be arranged afterwards, so fingers crossed!
I cant really pinpoint anything much that made it worse to be honest. I was diagnosed with Rhumatoid Arthiritis after having my 2nd DC in 2011 and that has seemed to get worse, plus I had some gyane problems which made me anemic along with cold after cold (that will be the non existant immune system) and it started off with having a couple of naps in the day (DP works evenings) and then got worse and worse really.

Thats great to hear Fuzz- like I said I had no idea about this service so its great to hear a positive experience. I have had CBT for a different reason (OCD/anxiety) and I can highly rate it so hope you find that helpful!

I know this is a bit of a personal question and I dont mind if nobody wants to tell me, but is anyone getting DLA for CFS/M.E? Only I was going to look for part time work when youngest DC starts nursery but the way things are looking there is no way I would be able to work but I know they have cracked down on DLA so wondered if anyone had any problems with applying??

Thanks everyone. Sorry for being so mopey. I wish I could be signed off for a term so I had a couple of months not worrying about when I was back in work. Just time to be ill, get better & get my head back together. Before this, I'd had 3 days off in 10 years - I never get ill

Welcome, justtired. Sorry you have to join us but this is a lovely cosy place to talk to people who understand. I've just been refused DLA & am appealing. I won't get it but I need to try.

Sorry you were too unwell to work Fuzz, and that your line manager was so weird about it. Some people just don't get it.

People always say I look ill, smiling. Am I ok? Has something happened? Can they do anything? And that's on days when I am well enough to work. I look shit the whole time & being reminded that I look shit isn't very helpful. Sorry people are noticing that you are ill too. It kind of reassures me that I am actually ill though & that if other people can tell then I feel like less of a fake.

Abitrary, I'm glad your deputy was supportive. The return to work thing sounds like a good plan.