Spoons! Support thread for CFS, ME & Lupus sufferers

[Grockle]

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.



Spoon Theory here

[smilingthroughgrittedteeth]

Hi to all the newbies

I'm out of spoons, optimism and the ability to drag myself through this morning I stood at the top of the stairs and seriously considered throwing myself down them, I am not suicidal but I desperatly want to have a valied reason to to not have to go to work or even get out of bed.

I'm due to do jury service on the 21st and I am so panicked by it that I can't sleep, which makes me feel worse, they've already had a letter from my gp in november which is when they deferred me to January, I can't get through the day without sleeping or fainting, I have ibs and dizzy spells, I can't remember what I walked into a room for, how can I be trusted to sit on a jury? Appparently I'm not ill enough to be excused.

I'm a horrible girlfriend, a bad nanny/employee and I'm failing everyone and everything I do

I just want to curl up in bed and hide from the world

[magso]

Smiling, sorry you are out of spoons, wish I could give you a couple of mine (Ds went back to school today so not as tiring as holidays). I know what you mean about wanting an 'valid' reason to be in bed that others will understand (such as a non debilitating but highly infectious illness, or a foot injury that requires bed rest to recover). Often I feel as ill as did when in respiratory and cardiac failure (due to pnuemonia) - but now the debility is not recognised. You are not horrible - you are ill girl - and feel horrible! Big difference!

I've not done Jury service (was called up once but excused as ds had just arrived and needed me) but know that I would not have coped with a full day of anything until recently. Assuming you cannot be excused (can the GP write to help excuse you I seem to remember my excusal was quite late before it was definate?) Are you able to rest sitting up? Would taking notes help you concentrate? Are there anythings that could help you stay comfortable ( such as a back cushion?). Find out about breaks - is there anywhere you could rest properly? Anything that could help you manage and most importantly feel you are managing. (hugs) and spoons

Hello to those new to the thread.

[smilingthroughgrittedteeth]

magso thank you

I have just woken up having fallen asleep on works sofa thank goodness I have understanding bosses. Have got half an hour to wake up before school run.

I rang the court and spoke to a lovely lady and explained that I am unwell I told her about the fainting and dizzyness, I couldn't help crying she must have thought I was crazy, I am waiting for someone to call me back

[fuzzpig]

I hope you get excused from JS smiling. I've always really wanted to do it but there's no way I could cope with it right now - I hope I don't get called up until I'm much better.

Nice to see so many new faces

[belleshell]

hello all you newbies.......sorry your here but happy to have you along..Smiling you are not horrible, but ill... and i too at times wish i could have a valid illness, thing is you have we just dont have a flashing light showing that, and we tend to just try to get on with it..... i really struggle withthis time of year as all the disruption to normal routine really upsets me, add that to all the running around we do at christmas, im usually heading for a crash...i do however feel quite well( well well for me) this week, so fingers crossed i have done something different this year.

hope everyone else is getting on ok back at work.

[smilingthroughgrittedteeth]

What's getting to me most right now is that everyone except DP and my mum keep telling me I look better, its like they think that because I don't look as tired as I did 6mths ago when I was so unwell I couldn't get out of bed for 6 weeks that I'm fine now and they are expecting more and more from me and getting annoyed when I don't have anything to give them

[fuzzpig]

I know what you mean smiling. I am not as ill as I was in the summer so people expect me to be fine, but I am really really not.

[belleshell]

funny i was told today i look well..........mmmm shame about the constant headace, numb face, poor sleep, constipation, tingly fingers and wonky leg!

[Grockle]

Welcome NurseJackie, confuddledCOTcome, & Reenypip. Sorry you are on this thread but it is a lovely place to vent & chat with people who understand.

Smiling, you are none of those things. I feel like an awful mother, partner & teacher... I can't do any of those things properly. And now I am unfit & fat as well as lazy & sleepy. So sorry you can't get out of jury service. Maybe you'll be dismissed on the first day? Well done for calling. I have a phone phobia so I wouldn't even have considered phoning them! I've always quite fancied doing jury service.

I often have people telling me I look well now... I think because I have a bit of colour and have had minimal pain for a couple of weeks (coinciding with being off work...) people think I'm ok. But I'm very not ok.

When I get really unwell, I start to wish i could be hit by a bus & fantasize about all sorts of horrific things that could happen to put me in hospital or bed for several weeks. I'm not suicidal either (although when you have a history of that, Drs are very quick to think that you are a liability)

SirBoob, hope you are ok. I know it's difficult.

[fuzzpig]

We are in a pretty bad way at the mo. DH is asleep on the sofa already and I'm really worrying about him getting a job.

Am back in my wrist support and feeling dizzy. I would love a 'real' reason to be off too. Feel so bloody pathetic!

[Grockle]

I always feel pathetic too but you know you're not. It's awful, feeling so unwell. And with DH being ill too... If you were closer, I'd offer to come round & help in some way but I'm too far away. If there is anything I can do from afar, I will gladly help.

[belleshell]

well i have cancelled my CBT, i havent got the energy to complete a 4 page questionaire, and a diary about activity....... i know what makes me tired, its work, but i love my job and HAVE to work..... i cant have a 10 min break every hour....im not sure anybody that worls can, but when you work with people its near on impossible. So i cant see point in CBT. im not saying it wont work for others, but im not sure this counsellor understands im not depressed, i have CFS! like i have said before its not that i dont look forward to thinks because im depressed tis because i havent got the chuffin energy!!!

[Grockle]

Yep... I think a lot of people don't realise that... that you can feel unhappy & not look forward to things because you're knackered & have no spoons left.

I'm going to listen to the Lupus thing on Jeremy Vine

[fuzzpig]

I hope the lupus thing is interesting. My auditory processing is shit at the best of times so any talking on radio/audiobooks etc is a total no-no for me - and it's even worse with the brain fog of course.

I am a bit behind on the conversation here, I'm sorry I haven't been supportive for a while and have been very self indulgent. Mood has been really terrible. Bad time when post Xmas slump and PMT fall in the same week! Appetite has been freaking huge as well.

My POTS symptoms have been really bad the last few days - I've decided to try and keep an eye out to see if it is period related.

Also, I was briefly looking at something online about POTS symptoms being improved by tilting your bed? Putting blocks under the head end or something? Wondering whether to give it a try. There are certainly occasions - like tonight - when I don't want to lie flat in bed, and prefer to be on the sofa, where I am propped up.

[SirBoobAlot]

Suffolk, so glad you found us, was worried I had scared you off I love my peer support work, good luck with your training.

Belle, I quit my CBT for the same reason. It got right on my tits. Know lots of people (with mental health issues and or ME) who think it has been really helpful. But it just made me more frustrated. I was told to take three 40 minute 'therapeutic rest' breaks per day. I have a three year old

Smiling, know what you mean. When people say that to me now, I say, "I look good because you're seeing me on a good day. In reality, I feel as crap as you would look with the worst bout of flu you have ever suffered,".

Reenypip, I was in AYME too. Do hope you're holding up okay with the pregnancy as well, sounds like you have a lot on your plate.

Hello to all new joiners :) So nice to see you, but so sorry you have to join us at the same time.

Two mini rants: Firstly, my period is starting tonight. I know it is because the pain has started in my left leg, and I feel like I am going to vomit. The pain will get worse over the next few hours, will probably be sobbing by 3am.

Second. DP believes in me. He has a lot of faith in me, and hopes that I will recover. But it pisses me off. We saw an old friend on the bus today, who I haven't seen for a while, he asked what I was doing, I said X Y and Z, sadly no . DP gives me a squeeze and says, "You give up too easily. I still believe you will do it. You're so bright, I know you will manage." He is trying to help, and yes, it is wonderful to have someone so much behind me. But what I would have gone into is incredibly physical; I can't even cope with the academic side of things now because of the brain fog. Know he is trying to keep me feeling positive, but if it was that freaking simple, I would already be there!!! GRRRR. Wish he would be bloody rational about it.

[NurseJackie]

Sorry I'm on my mobile so apologies that I can't reply to everyone individually. Sirboob I can sympathise I am due my period in a few days and feel really wiped out. Also have a chesty cough so maybe going down with something hopefully that rather than another relapse...
The lupus phone in on Jeremy vine sounds interesting will listen on I player.
It's a tough illness when you have a toddler to look after, I never thought I would be this unwell again. It feels like its happened at such a difficult time. An active only child and a mum who is struggling to keep functioning isn't a good combination. I'm so pleased that he has been enjoying drawing and games recently but feeling guilty re the amount of TV he's watching

[SirBoobAlot]

Oh Suffolk, he really is. Really really is. But it is just a bit of a kick in the teeth every time I'm asked about it, I guess, and his ''it will all work out'' is helpful in a lot of circumstances. Not when it comes to things I know will never happen. I haven't told him it upset me, because I know he meant well.

Jackie don't feel guilty re TV. Cbeebies (and the Beatrix Potter ballet....) seem to be on constantly here. Needs must.

[fuzzpig]

We have DVDs on loads here. As you say, needs must. I am lucky they have each other to play with though, and DH is getting a bit fitter physically now (although nowhere near his pre-injury long-distance-running standards :() and in any case is much better at playing with them than me, especially when it comes to small world/pretending. I just can't do it as an Aspie I am much happier with jigsaw puzzles and Lego!

I'm really panicking about the prospect of being a SAHM, DH could barely rouse me just now (to watch DS while he walks DD to school) - how the heck will I manage 3 school runs a day without collapsing in between? DH has been brilliant doing everything in the house but he will be exhausted when he returns to work and I don't know if I could cope with doing it. And the worry about the last shreds of my self esteem, which had been so boosted by my job, but ripped apart again by this illness. I might lose a part of my identity if I give up - but then most of the time all I want is just to rest, and enjoy spending time with DS as I did when DD was little (I started work before DS was 2), and just read lots and write a book or something, because I would actually have the energy and time. That sounds lame, I have only been working 18 months FFS.

I know what you mean about the annoying optimism BTW - DH can be similar and it drives me up the wall sometimes. Although I have to say he's not been like that around the CFS - I think seeing me this ill has really scared him, and he too is panicking about returning to work because he won't be able to look after me. However with other things - for instance when he was having the operation and I was panicking - he is very "it'll all be fine". I can't blame him, he had such a shit time as a child that he would have given up without blind faith! I OTOH am a pessimist (though I prefer realist :o) - it is self protection for me, I always think the worst because that way I can't get hurt.

Sorry about the period symptoms, I've just had mine and the pain was a lot worse this time, no idea why.

Sorry for the waffle

[smilingthroughgrittedteeth]

I've gone from being a nanny who spent the day doing crafts, running around the park, making dens, running errands, making up stories, without sounding big headed I was a bloody brilliant nanny and worked hard.

Now I don't even get paints out because I don't have the energy to tidy them up

I'm lucky that I didn't get this ill until my youngest started school because I can now coast to some extent and my job is now more about being a taxi service to school and activities but I feel so guilty.

[NurseJackie]

Hi thanks for the reassurance about the TV! I always vowed that DS wouldn't watch it but doesn't every parent say that...
I can empathise with the optimism. DH is like that in fact just probably too laid back to worry about anything! But he has been a star the last few weeks so shouldn't complain. Fuzzpig is there anyone around to lighten the load for you in terms of helping you with the kids or housework? I'm seriously considering a cleaner for when I go back to work in a few weeks. I phoned work today to arrange my date to start back on based return and now feel panicky my period has arrived so hopefully I will pick up a bit. My poor friend came round yesterday on her birthday and I could barely string a sentence together!
Smiling the guilt is awful isn't it but the fact that you are there for them is the main thing.

[fuzzpig]

There isn't anyone really Jackie. I am not good at making/maintaining RL friendships (a myriad of mental health problems mean I am very shy and have trouble trusting people), and those friends who are close all have big families and have loads on. A couple of friends dropped round lots of meals when DH had surgery last year but I couldn't keep asking that of them now. No family around either.

In fact I have related news - had a letter from HomeStart today saying they can't give us a volunteer after all. They had been certain they'd have somebody - due to training up new people - especially as our need, while hopefully temporary, was more immediate than others as we were referred when DH was about to have a major operation.

What it has really brought home though is the fact I have pretty much resigned myself to having no help now. I want to cry about the letter but I can't, I am too wiped out and even though I really thought it was the one thing that would work out (as opposed to all the social services things which we have not been eligible for) in a way I'm just not surprised because I'm so used to getting knocked back.

[belleshell]

Hi all

hope your spoons are lasting this week. im in work again tomorrow. im back to 4 days a week.not sure how im going to get on im buggered, and started with pain in hands again (usually a big warning to slow down!!!)

[fuzzpig]

I'm back on Saturday for the first time this year - went to the doctor today (my first time outside the house in nearly two weeks ) and got my sick note with no trouble. I am not looking forward to it really. OTOH I did manage the uphill walk home without too much pain so that is positive.

I found out there is a vacancy at our smaller partner library so need to consider if it's worth applying. Our family outreach worker came today too and is organising some help for DH in finding work, and can also get some help in applying for DLA with the form etc.

Anyway, the big news is, my last blood tests (coeliac, plus repeats of stuff like iron, ESR etc) have all come back clear, so they are going to fax them back to St Barts who presumably will then make my dx of CFS official, and things will move forward a bit with work etc.