Spoons! Support for those with chronic pain & fatiguing illnesses

[Grockle]

Spoon Theory here

Grockle.
I think you need to phone in sick and get an appt at the gp.
I don't say that lightly, as I know it would cause you issues with work, but you have to rest.
It's the only way to get better.
My ear is not so bad now, but I look very silly with a wodge of cotton wool poking out of my ear :)
Dh is away from tomorrow til nexy sunday and I cant get the drops into my ear canal myself so ds1 has done it for me. He is only 9 :( too young to be helping your mother with her medication :( :( :(
Dh has taken the boys swimming this morning and they are at the park playing football now.
It's just too windy for my poor ear to cope with.
Oh! And I wrenched my back this morning moving the dining table....sigh.

Grockle this may sound daft, but would you consider using the wheelchair every day?

On good days you might not be desperate, but you'll be conserving spoons which you're sure to need later.

You're certainly not being a fraud by using it - you're sensibly managing your condition. And frankly, fit people who drive a whole car a mile to the shops never feel the need to justify themselves for not walking, so why on earth should we who have genuine cause?

Glad your ear is not so bad, badvoc. Horrible to need DC to help with basic stuff, isn't it?

HandDived, if I could push myself, I'd use it but I'm not strong enough & ds is too small to push me. I've been looking at renting an electric one for a couple of weeks - at least then I could get DS to school & take the dog out. But how will I afford that on SSP?

What about applying for a grant for one?
There must be grants out there!

Occupational therapy department of social services would be the place to start re: wheelchairs, I would think. At the very least, they should be able to signpost you.

FWIW I don't think it's that terrible to be asking DCs to help, maybe it's a little different from normal chores etc but most DCs love feeling helpful and appreciated and independent, and IMO it's better for them than mollycoddling doing absolutely everything for them - in the long run they are more likely to grow into self sufficient adults. :) My DCs are little (5/3) but I want to teach them all that stuff. Unfortunately I don't always have the energy or patience but that's the plan anyway.

Today has been totally shit, am just on the sofa watching endless DVDs, being grumpy with the DCs. Not even in much pain (comparatively speaking), just exhausted and really, really low.

Hiring an electric wheelchair for a while sounds excellent, and will give you a good idea of how practical it is to get into the house, etc, or whether a mobility scooter will be better. I've been looking on eBay for second-hand scooters, and many are (for sad reasons) hardly used. They seem to start from around £100.

Are you a member of a teaching union? Do they have any kind of benevolent fund?

Also, if you do this sooner rather than later, would it help save your job?

Sorry if I sound blasé about the wheelchair, by the way.

I actually found it less depressing when I started thinking of myself as a disabled person who could do quite a lot, rather than as a non-disabled person who kept failing to be able to do things.

Thank you. Here is my plan tomorrow...

Work?
GP - ask him to put me down-- about help - occ therapy, social services. WTF to do & how to manage a child, illness & a job I am too ill to do but not ill enough for DLA A grant is a good idea... I will google (and then have no idea what I read because my brain is too fucked to actually retain anything)

I agree Fuzz, I like DS to be independent. And people often comment on how confident & capable he is... I think a lot comes from being a lone child with a lone parent.

I need this sweaty/ shivery thing to stop... it squeezes what little joy I have in each day & makes me feel miserable. I feel dirty all the time, all sticky & clammy but so bloody cold.

HandDived, I am in a union. I never thought of contacting them. I have occupation health assesment on Weds but have no idea what that involves or whose 'side' they are on... are they there to help work deal with me or are they trying to help me stay at work? But yes, it needs sorting sooner rather than later.

So sorry for being so self-absorbed atm.

There's very few powerchairs on ebay (unless I am doing it wrong which is quite likely) & none on gumtree but I will see what I can sort & look into second hand ones in mobility shops.

I think you're right about being an disabled person who can do a lot rather than an able-bodied person who can very little. That would help a lot.

One friend found that embracing the wheelchair meant he could go out with his kids to stately homes, etc, without paying too high a price.

Think you are doing great, Grockle. Don't give up on the tribunal yet, please! And good that you have a plan.

Could you also contact the ME Assoc or some such?

Goodness, don't apologise. You're being lovely even trying to think of other people at the moment - but you need your spoons to look after you right now.

OK. Meeting Weds. Sorry, don't know much about Occ Health role.

Start writing down now the things you know you want to talk about. If necessary, keep notebook and pencil in pocket in case you forget what you're trying to write before you can assemble materials.

Have just checked on eBay. I'm seeing some results under "powerchair", "electric wheelchair" and "mobility scooter". But they may not be local to you, and the chairs seem more expensive than the scooters. Googling for your local mobility shop sounds a great idea. They may have a regular turnover of secondhand stuff, too, so could call or email you if something suitable comes in.

OH should be there to protect your health! They are therefore on your side but may not be totally impartial. If they recommend that you have time off/ start late/have a chair/rest during the day- then theorectically your employer has to do their best to implement their recommendations.I saw a OH specialist at a london hospital (utterly exhausted by the time I got there) and he was suprised I was working at all. He said most people with my symptons would not be. (I did not have a dx of CFS at the time but had been very seriously ill I think I got CFS because I tried to do too much too soon) Hope it goes well Grockle.

I have ordererd a new book from Amazon -from fatigue to fantastic (Teitelbaum). I have only read the free sample (on dhs kindle) so far but it looks useful. I will let you know if I improve. I did the energy anaysis program from the website (vitality101.com) which suggested a very long (and costly) list of suppliments and an equally long list of subjects to discuss with my gp (such as my PoTS, sinus trouble, adrenal and other hormones, sleep issues, pain etc (any british gp would have a fit!!) but I will try the least costly suggestions for now, such as taking my usual magnesium suppliments before bed and not being too hot at night. I think I will work on better sleep. Any one else read it?

"'If you have trouble remembering my name just think of a bag of crap."

Yes this was the inspiration for my name.

Thank you for the welcome. Wading through treacle is a great way to describe it. I am going to use that for my appeal.

Surprise surprise, I wrote a letter telling the DWP that I disagreed with their decision and they wrote back within about 3-4 days telling me they hadn't changed their minds. Still no call for an actual medical or they haven't bothered to ask my doctor anything. Now it is a formal appeal. I am going to send them pages and pages of descriptions about my days, what I do and can't do. How I live, what my symptoms are and how I feel. They NEED to GET IT!! Still not terribly hopeful really.

What other medical professionals do people see? I don't really bother my GP now, there isn't any point although I am on Gabapentin to help me stay asleep, else I constantly wake up. Ok I still don't feel rested in the mornings but at least I actually sleep. This week I have been popping quite a few paracetamol as my head has been killing. DS is off school for the holidays so I haven't been able to sleep when DD has had a sleep and it has affected me. Dreading the summer holidays!

So do people use wheelchairs even though they can walk? I never do but when me and DH take the kids out (no where near as often as I would like because it tires me out so much) I am exhausted and we often need to leave before I normally would like to just because of my exhaustion. I would feel a bit of a fraud though for using a wheelchair when I can actually walk around.

I wasn't aware that nightsweats was an M.E. thing? I thought I was just getting unusally hot, which is weird for me as I am always cold, especially when the tiredness really kicks in. Thats my main symptom too, the bone crushing tiredness!!!

Out of interest, what jobs do people do and how many hours?

I used a wheelchair at the airport recently. I am considering whether to use one next trip out.

Thing is, the kids need to get out run about and walking round a stately homes and garden would totally do me in. So...

I work freelance from home, about 15 he's a week when I have a project, I guess. Am considering whether I should not take on any more work. Can't afford not to but...we may need to move to a smaller house or something.

Oh god, yes, it took me ages to get over the "am I allowed to use a wheelchair" bit.

Yes, you are allowed.

We don't find it strange to take the pushchair in case the pre-schooler gets tired, or to see an elderly person get up from a mobility scooter. Both can walk, they just get tired soon and can be a bit creaky. It's perfectly OK to have help from wheels at any age - we're just much more used to seeing it with the very old and very young.

In more than 5 years with a wheelchair, I've had one person comment in a weird way, and he was joking in front of his mates. Everyone else - at cafes, stately homes, hotels, theatres, using taxis, on trains - has been absolutely fine. I even used to have friends wheel me down the sports centre corridor to a Tai Chi class, where I'd get up and join in, then wheel back! People have no difficulty with the explanation, "I use a wheelchair for outdoor distances" or "I'm not well and get tired quickly."

And as corestrength says, places like airports (and stations, supermarkets and garden centres) provide wheelchairs. It's expected that some ambulant people will find them helpful.

Yes, night sweats (and day!) very much an M.E. thing.

The film director Lord Puttnam has special permission to remove his jacket in the House of Lords, because of his poor thermal control from M.E.

CrapBag in terms of work I was doing 37hrs a week as a library assistant (so fairly physical) but it was quite soon after starting FT - a year ago now - that I got very ill. I recently got permission from occ health to reduce my hours to 16 (four 4hr shifts pw), with a view to making it permanent after a few months. I just started new hours last week after several weeks off sick due to relapse. Time will tell if said hours are manageable, although my first week hasn't gone well.

I heard someone say that they are a part-time wheelchair user. That seems sensible. I feel like a fraud when I wheel myself along but get up & push the chair down the steps or something. I feel like a Little Britain sketch! It did take me a while to get used to my wheelchair. I hate using it but I love that I can feel awful but still go out & about with DS. I know an electric one would be amazing atm. I will definitely get onto that. In fact, I spoke to my mum tonight & she said she'd help me buy one. She's lovely & offered to come over to help me but I don't think she really gets it... she always sounds cross (I think it might be concern) & I get stressed. I will ask her to come if I don't get better.

I was thinking, I've slowly been getting worse all year & have been quite bad for 5 weeks. 2 weeks off work hasn't helped... I think that is significant - if I;m not better after 2 weeks of pottering slowly at home without DS then I am really not well. I find it really difficult to admit to being ill because I don't have something visible or 'normal'.

Love & spoons to you all.

Morning all. I can't offer the same level of support as some of you on here, but I can share some tips I've picked up, so if you haven't heard of it, I keep seeing night sweats being mentioned, I'm not sure what meds it can be taken with but the herb Agnus castus (vitex or chasteberry) is really good for night sweats. I got so fed up with my night sweats & my gp not helping that I started taking vitex, I've been on it a month or so and its helped

It's also meant to help with fibromyalgia, migraine, headaches and some joint pain

fuzzpig I was working 37 hours a week when I got diagnosed. I was signed off for a month at one point and I asked work if I could go part time but they wouldn't let me. I carried on and was always phoning in sick or dragging myself into work, just for them to send me home again. In the end they had no choice but to let me go part time. I went down to 3 days instead of 5 and I managed it for about 8 months but I felt awful and it just got worse and worse. When I mentioned it to my doctor at the time she told me I shouldn't have been doing full days at all so I changed to 5 half days (we were trying to keep my hours at 22 because of money). I lasted 3 weeks and my doctor said I shouldn't be doing every day either. I ended up signed off until I moved onto Incapacity Benefit and I left work officially after being off sick for 9 months. I really tried to keep it going as long as I could but it just made me worse and worse.

After a good few years I thought I felt well enough to try some work and I did it under the permitted work rules. I went back to college which was 1 day a fortnight (to train to become a TA) and 6 hours a week in a school. At first I done 1 school day. Then the school offered me some work in the breakfast and after school club so I could earn money whilst I was training. Breakfast club was every day for an hour and a quarter. After school club was once a week for 2 hours and I changed my classroom hours to 2 mornings as I was struggling with the full day but I still needed to be doing 6 hours in a classroom.

It was ok for a while but it soon became apparent that I was getting worse again. I started off with 6 hours, gradually increased to 14. Then dropped the classroom when I qualified (which took 9 months to do 2 NVQs so I was doing all my work at home for college) so was doing 8 and a quarte hours. Then I dropped the after school club as it was starting at 3 until 5 and this was not my best time of day. So I was down to 6 and a quarter hours a week and I had to give it up.

Sometimes it can take quite a while for you to realise that new hours aren't working. Hopefully you will be ok but just be aware. I worked for 9 months part time after my original full time hours and it took me all that time to admit that it wasn't working. This was before children so I could sit at home resting. Now that isn't an option so I have to be extra careful. I know I can't work, nothing has changed and I haven't got any better. Its a shame that the DWP can't see that. I even told them about my attempts to return to work but they clearly aren't interested.

That sounds really stressful crapbag. I am bricking it about the whole DLA thing. And I guess ESA if I end up off sick long enough for SSP to run out. It's ridiculous how many hoops we have to jump through when we can barely walk! :(

I am really unsure of my new hours. I'm glad I got them but as you say it will take a while to really know if they're ok. I don't really feel I've recovered from this latest relapse but I was under a lot of pressure to go back. I'm not going to quit, but I am starting to accept the fact that it might get to the stage where they get rid of me if I reach a certain level of absence.

I'm doing 3-7 tonight but I had to take DS to a speech therapy group - although DH doesn't work Mondays, he will soon be doing a training course on Mondays so I need to do it. It will also mean doing the nursery run at midday. I don't know how that'll work - am exhausted now and I didn't even have to do the nursery run bit as DH met me at the bus stop. It was only a slightly longer walk home (like 6 mins instead of 3!) but I felt wobbly and dizzy and achy and almost gave up sat on the grass to wait for DH to come back and prop me up.

This is such a cruel, humiliating illness.

BTW what did you do before you trained as a TA crapbag?

(I have no idea what I want to do when I grow up )

Blue badge arrived in the post today. I celebrated but in a way, it is a celebration because I'm getting even more independence.

oooooo look what i found

Vast Range of Wheelchairs From Sue Ryder A Brand You Can Trust. www.SueRyderForLife.co.uk

Belle and Grockle - the sweats are truly awful aren't they? No wonder we don't sleep well.

Hand - "poor thermal control" - that's me. I can't stick being slightly cold (I literally seize up just like the baddie Terminator in T2 when he walks into the dry ice - I can almost feel my legs and ankles breaking when I try to move them) but sweat at the though of getting warmer. My old doc described me as having a faulty thermostat. OH says I radiate more heat than the sun, yet I'm shivering!

Crash - know how you feel about the Blue Badge. My doc had to write in for mine as I don't qualify otherwise. I still freak out at the thought of it, though. I've used my wheelchair very infrequently (I'd rather stay in than go out in it tbh) and am petrified that having a Badge will tempt fate that will put me in a wheelchair permanently. I have the utmost respect for those that live their lives in theirs and am devastated to think that some people will lose their benefits, cars and possibly even their Blue Badge due to these new benefit cuts.

I've recently started on Agnus Castus in an attempt to get what seems to be menopause symptoms (extra fun, long-lasting PMT and even more extra fun two periods a month! I didn't even think that it may help with sweats - fingers crossed!

Anyone here see a rheumatologist?