Spoons! Support thread for CFS, ME & Lupus sufferers

[Grockle]

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.

Spoon Theory here

So was feeling a little more positive toda, until i find out my dp is loosing his job

That will teach me for thinking things were looking up a little. I know i sound like a really pessimistic person and i really dont want to but life just seems to shit on me alot of the time.

Not sure how we are going to cope financially if he doesnt get another job which is going to be difficult, it took 2yrs to get this one. I an definately going to apply for DLA although i know i eill prob get turned down, does anyone know where i need to start?

Hello everyone

Arb I'm sorry you got sick too, that's the problem when your looking after kids you inevitably catch everything from them.

Grockle I'm sorry things are so horrible at the moment.

I don't have the energy to read back and reply to everybody but I hope you are all doing ok.

I have a poorly horse and spent all night at the stables, I've been there almost all day apart from 3 hours when I had to go to work and have just got home, I am beyond tired I'm freezing and my throat hurts so much. I did manage to sleep a little whilst curled up in the corner of the stable but I just want my bed.

Oh, justtired, so sorry. For DLA, just contact the dept for work & pensions & request an application form. Do A LOT of research before you complete it.

Sorry about your horse, smiling. Hope you can get some rest tonight.

Hi Saltire, sorry you are so ill & low. I am too. Not in a good way at all so I empathise. I've never had sinusitis but constant pain and feeling crappy is miserable.

Confusedpixie, I never mentioned it to my dr so have no idea what they would have recommended. I don't think I could have trained my bladder...it was fine then went wrong and is now fine again. Something was not right & fixed itself. Goodness knows what but I am glad I am no longer like a 2 yr old in constant need of the next toilet stop! Days out were a nightmare!

Icepole, I don't know what to say. A full timetable is a lot. Have occupational health agreed to that?Maybe if they see you struggling, they'll realise you are not well enough? Or do what you can & then be signed off. I don't have many tips but I try to do as much as I can in school, using quieter times to do planning, assesment, record keeping etc. My planning is pretty non-existent but that's mainly because the children I work with need a lot of repitition so there is less need for new lessons every week. They make good progress so I don't feel so bad about lack of amazing plans.

I had my report from occupational health which says that they doubt my ability to work as I do now & we need to discuss reduced workload & fewer hours

Ofsted is now over but I am feeling really unwell. Tomorrow should be an easy-ish day though so that helps.

Grockle I am amazed you are thinking of tommorrow after such a difficult few days. Hope you get a chance to rest up.

Thanks Grockle, no they didn't agree to it, they said I needed longer to phase in and that I should have timetable modification until the summer. My senior classes are manageable, I can be low key with them but the junior ones are hard and the behaviour just now us horrendous. How I can get to summer I really don't know.

Magso, I think I am on automatic pilot now. I feel dreadful & look it, as everyone keeps telling me.

Icepole, I think all you can do is keep talking to management. Let them know how you are feeling. Can you contact your union for advice? I hadn't thought of that for myself but perhaps I should.

It's really despicable that management are ignoring occ health, icepole

Glad I'm off at the moment as tummy is really bad. Might be the antibiotics. Hope it's better by tomorrow as I have my last group session.

Icepole I agree with Grockle that you need to tell management you are not ready for FT yet, and that doing too much is likely to set you back or make you ill again (relaspe). Remind them of the advice given by OH. If they still insist on FT then you must go off sick at the first sign of relaspe. Be very careful with your health.
Fuzz hope you are feeling better by tomorrow.

Can anyone advise ? have had loads of blood tests nothing conclusive slight anaemia low blood stores but have been feeling exhausted f or a while now have been taking extra iron but nothing shifting it GP keeps mentioning ME as I think we are running out of ideas just really wondered how you know if you have it , I don't have any aches pains my only symptom is this complete wiped out feeling but it does come and go sometimes just low level tiredness which is my new normal now, but at other times complete wiped out exhaustion keep resting have been off for 3,weeks now but it's not really gone its always there really feel I have to go back to work next week but very scared in case I get the crashing exhaustion any ideas anyone?

Justired when you fill in the DLA forms make sure you right about your worst days not your best......ie how do you manage meals when you are ill. if you can make a meal then put what you do if you cant then put you need help from whoever to cook your meal!!

Fuzz yakult and stuff live that is good to take when having antibiotics..

Icepole your managers are on very thin ice if they are going against medical advice. I would contact occupational health again, or do what you can then go off sick....

Away hi welcome along, ME is very different in so many people, but diagnosis usually goes on symptoms and the length of time you have been unwell.. it is also classified as mild moderate or servere, search NICE guidelines for chronic fatigue syndrome which lists the criteria for diagnosis... I hope for your sake it isnt, but if it is stick with us, we are a freindly bunch

Grockle You are a star, your determination is outstanding, just take care....

hello and spoons to everyone else xx

Justtired, like Belle says, write only about your worst days or what you are like most of the time, not on your better days.

Hi away... no advice, I'm afraid. Other than to rest.

I have finished work for the week, thank goodness. Spoons & love to you all.

I need an answer if you don't mind: my left side has been tremoring on and off in short bursts since I went to bed at ten forty five. Is this normal? I've been overly emotional as dp and I have had a heart to heart but I've never had this before. It's worse when I hold my arm closer to my body.

No idea pixie. It sounds annoying though.

I've noticed that I seem to have weirdly reduced skin sensation around my lower back, hips and arse (but plenty of pain sensations in the joints and muscles under the skin). It's not quite bad enough to call it numbness, but it's going that way and is much worse at night. It's also annoying. I lay awake last night wondering why I can't lose the sensation of pain instead. That would be excellent.

Sorry everyone else is having such a crap time. I hope you're feeling a bit better for not having to be at work, grockle. And I'm absolutely shocked at how your management are ignoring OH advice, ice pole. That is absolutely not on.

Not sure either pixie, sorry :( I've never had tremors as bad as yours sound. Any shakiness I tend to put down to trapped nerve or low blood sugar.

I am snuggled on the sofa having made it halfway to London. I had to get off the train early (thankfully I knew the station and knew it had bathrooms! ) and then went home again. Wish I'd stayed home as I wasted nearly £40 on travel that I can't claim back :(

Really gutted to be missing the last session.

We have 80 days to raise the funds to continue the Rituximab research in Norway.
Rituximab successfully treated two thirds of ME patients but we need to fund a bigger trial.

"However, with only 30 patients the study was too small to draw definitive conclusions. If the findings are replicated in a bigger study, this might be the most significant breakthrough in ME?s research history.

The scientists at Haukeland applied for support for a larger study of 140 patients through the Research Council of Norway (RCN). In December 2012, the RCN stated that the scientific quality of the application was worthy of support, but they failed to allocate funds for this study in favor of other projects."

"The crowdfunding campaign is being led by a medical doctor who is also an ME/CFS patient and who has a window of about 3 months before she expects her rituximab infusion to wear off and leave her bedridden again. She won't get another infusion - she was part of the original trial. She's using this slice of life available to her to campaign for funds for a confirmatory trial."

see here and here is the campaign page BTW if you donate it might ask you for the amount in US dollars, so it will be less in pounds.

She has already raised £52K and presented it to the researchers. She needs to raise £800K.

What a shame, Fuzz. Sorry you missed it. I hope you are feeling better. I can't help either, I'm afraid Pixie. I get the shakes from time to time & it's usually more pronounced on one side but it's not a huge problem. I hope yours is better today.

Arbitrary, my hands, feet & bum(!) go numb. No idea why! Losing the sensation of pain would be lovely, wouldn't it?

I'm much better today - amazing what a little food & a day off can do! I bought a steam cleaner this morning so have pottered about testing it on things. Nothing too strenuous but my house feels tidier which make my head feel more peaceful. Could do with a nap now!

ok so who as snow!!!!!!

Thank you any way :) It carried on through yesterday on and off in the end. Not badly, but on occasion. The only reaosn I posted was because it really freaked DP out, and that in turn freaked me out He could feel it through the bed and got really worried. I thoguht it was because I was feeling emotional but apparently not. My shoulder still feels funny Maybe it is a trapped nerve or something.

Does anybody else struggle with typing? I am getting worse and worse recently as my fingers decide that they don't want to move as fast as my mind!

belle: No snow, we had five minutes of half snow half rain though which was funny!

justtried: I hope filling in the forms hasn't been too difficult :)

Yeah we've got snow although it doesn't make a difference as we'd be stuck indoors anyway. DH is working today; he had originally turned down an extra shift tomorrow too (he can turn down as much as he wants because it is casual work) because I'm not well but I told him we need the money, so the DCs are stuck with their grumpy mummy all weekend. :(

Confused I don't think there is any harm going back to the doc with those new symptoms. It is important to keep on top of the condition if it develops, I think. Just because you have CF doesn't mean you can't have something else as well. I get all kids of weird tingling and numbness and stuff, worse if I get very tired. But I make sure to tell my doctor if I get new symptoms like palpitations or anything.

We have snow Very pretty. Glad I am inside though.

build: I cancelled my nurses appointment last week So will see a doctor after I've seen the nurse and explain the new symptom to the doc too. I kind of put everything into the fibro basket these days, I probably shouldn't as it might not be!

We haven't got snow. We're stuck in the house anyway because H took the car key out with him when he went to work this morning. His university are having yet another open day. It's not snowy but it's cold and I can't be bothered with public transport with the kids to get anywhere. It makes everything more complicated and difficult. We've been watching men in black and making pop corn. DS2 wants to watch Star Wars now though.

I have trouble with typing. It hurts. I'm getting some voice recognition software from my employer.

I don't know what that trembling muscles is Pixie. I get odd shakes but not that . I struggle with typing and even more so with writing, as my fingers are heavy and get left behind and do odd things that cause wrong keys to be touched or untidy wiggles in writing. I also forget how to spell things - as if I never knew, but other times it will be different words that stumps me. I have trouble with numbness in my hands wrist feet and ankles and which feels different to the painful numbness of trapped nerves - which I also get (longstanding). I get knumbness in my nether regions (saddle zone) if I sit still for long such as on the train which I think is my spine playing up as it is longstanding. I don't really know what is caused by the CFS.
We have snow. Its pretty but melting on the roads and has mostly stopped for now. Had to take ds to respite this morning so had to go out clear the snow of the car. Ds (who is almost as tall as me) wisely refused to assist. He had already been out in the garden and got cold.

im to common for voice recognition, my car has it to call people, when i got car i tried it lots and even tried to talk posh.it called DP mam whilst she was at a funeral and ExH wife to be......then i couldnt make the bloody think hang up.... My wrists ache with typing and it makes me nauseous!!!

the snow is unreal here......deep cold and not very nice i need to go get DD soon from her friends, she slept over.think it will be a PJ day for rest of day!!

Belle - I'm sorry but I did smile at your voice recognition thing calling exH's wife to be

No snow here. I live too close to the sea, I think. The clouds seem to blow over us before raining half a mile away. It's drizzly and very cold though. I was going to take the DC to the play trail in the forest tomorrow but I think it'll have to be a cinema day.

I struggle with typing but it is much easier than writing by hand. I have to write every day at work and find it really hard - my fingers cramp and the go weak & can't hold the pen. Everything I do now is much slower & more awkward than it used to be. I often can't open bottles & jars & can't chop veg etc.

Fuzz, I'm sure DC won't think they are stuck home with a grumpy mummy. I bet they like being home with you. I always feel guilty that DS is stuck home with me but he actually really enjoys it. We snuggle up & read books or watch a film or he plays on the wii while I sleep

I called my rheumatologist & the earliest appointmemt available is the end of April.