Spoons! Support for those with chronic pain & fatiguing illnesses

[Grockle]

Spoon Theory here

I've never seen a rheumy, I was (quite lucky I think) referred straight away to the CFS team. I don't know if I may need to see one at some point as the joint pain/stiffness is very bad at times (I used my castle door analogy at work today!)

Crash doll don't be embarrassed about celebrating your blue badge! It is such a massive deal. My home start volunteer has one and a motability car (I'm not sure what disability she has as I didn't want to pry) but it has made a huge difference to her and is now making a difference to me too as she can take us out :) also the libraries in my county are now collection points for blue badges (they don't send them direct any more in an attempt to reduce fraud) so I see the huge impact they have on our customers. :)

Evans your terminator analogy made me :o (IYSWIM) - I have a movie analogy too! In xmen origins: wolverine, the bit where they plunge him underwater and inject his skeleton with adamantium and you see it flood his body and cause a wave of agony. Yep. That's what it feels like when it hits :(

I've never seen the terminator movies (I'm not generally into action type movies, xmen is a rare exception) but DH has them so I will watch that one with him next time to see what you mean!

Fuzz - it's towards the end. I haven't seen Wolverine, but will look for it now! I so understand the flood wave analogy, too.

And I definitely jinxed myself with my first post here as the pain today has been bloody awful. Am counting down to all my pain meds

CFS team, I didn't know that existed. I saw an occupational therapist which was just a group thing teaching us more about it. I did see a neurologist who was a twat and very patronising. I then got referred to a psychiatraist who told me I wasn't depressed (which is all the neurologist would say) and that is definitely was CFS. I also did have CBT which wasn't remotely helpful.

fuzz I worked for a mortgage company, doing office type work.

Oh, something to cheer everyone up. A copy of my OP that I just started in Chat all about ESA. Its a fecking joke!!!!!

"I have been on Incapacity benefit for a number of years now, for having M.E./CFS and not being able to work. I have just been assessed for the new ESA and have received a letter telling me that I have been placed in the work related activity group and I am expected to attend interviews etc with them looking at getting me back to work. I wrote to tell them I disagree with the decison, they haven't changed it so I need to formally appeal.

I phoned the DWP today to ask them why they have put me in the WRAG as I am not fit for work. She then told me that they have found me unfit for work based on my form and they agreed that I could not work. The letter doesn't actually state this.

The bit that really got me was when she said that they could come up with a cure in 2 years time so you can only get ESA in the WRAG for 365 days. Only people with terminal illness go into the support group (according to her). Yes there could be a cure, it could be 10 years away but you can only claim this benefit for 1 year, even though they agree that I am unfit for work. In 1 year my money will stop. She said I may be able to get the income related ESA but I said we don't qualify as my DH has a full time job. She said the government say that you don't need any more money after this. I actually laughed and said that my DHs wages don't cover our outgoings as its not a great paid job (not minimum wage, but by no means a good income). She didn't care obviously.

She said they have passed a new law that means you can only claim ESA for 1 year. But they do agree I am unfit for work, but I still have to attend interviews with a view to looking at returning to work!!!

So for everyone who thinks the government are doing the right thing. No they are bloody not!! A blind person isn't terminally ill, so do they not qualify? People with things like Parkinsons, MS are not terminally ill. Do they only qualify for 1 year as well?

I am so angry right now."

I don't think every place has a CFS specialist - my nearest one is a good few towns away. I actually got referred to St Bart's in London though (am in West Sussex) - I should have been referred to the nearer one, and I'll never get to find out why my doctor went above that, as he left soon after :( but I suspect it is because they use different diagnostic criteria and under one criteria (Oxford I believe) I wouldn't have been dxd. I may be wrong though. Maybe he just thought the London one was better - either way he had to get permission from my PCT to refer me so far away.

In terms of specialists I have seen a cardiologist - before I got very ill with the CFS, I had been having what I now realise was severe POTS symptoms, had a 24hr trace which showed nothing. I also saw a neurologist when I had a phase of awful headaches - again that was before the CFS got really bad, but by the time I saw him I knew it was probably CFS and he agreed it was just a symptom of that.

I am hoping to be referred to a POTS specialist because it is separate to the CFS, and maybe ENT as my tonsils are completely shit. I am supposedly going to see a psychologist in my town as well (had plenty of that in my teens including psych hospital stay so not a big deal) but my CMHT are seriously rubbish and I haven't heard anything. I will be seeing more of the CBTherapist at st barts though so am not bothered about waiting for the local service.

Totally knackered after work this evening, relieved I have tomorrow off although have to do two school runs (12 and 3pm) - that stuff is supposed to be what you do when you are a parent, I hate that I find something so simple so impossible!

Can't wait for ds to go back to school tomorrow, it's been 16 days and I am so tired. My pain levels have gone through the roof, and I have had to resort to tramadol twice in the past few days to cope.
I felt sorry for DH who had to make dinner and do everything yesterday and today, after being at work. With me being off for two years now, I always feel its the least I can do, but somedays that's just too much.

Hopefully tomorrow will be better.

Oh god crapbag that sounds awful and really fucking wrong

Fab I was sort of glad DCs went back to school today (DD has been asking "how many sleeps" since the start of the holidays!), they have been bored at home because we can barely go out.

I think it's amazing you can cook at all, that's really good and there's nothing wrong with skipping it some days! I am hoping to get my perching stool tomorrow not that there's any room for it in our tiny kitchen - I will be very happy if I can contribute to the meals.

I lost you for a bit there. I have been doing well as on holiday and I find I manage as long as I stop as soon as I start to feel unwell and I try and do one day on one day off activity wise. Back at work now though so dreading the return of feeling crap. Meeting at work tomorrow to discuss OH advice with HR, not looking forward to it.

mum mum suffers from epilepsy.......not terminal but has fits daily and cant work....her ESA stopped last month cos her year was up!!!

so shit

ESA is one big debacle, isn't it. Sorry you're having such a frustrating time crapbag.

I was feeling a bit better, I think. Not brilliant, but a bit better. But now I'm back to stupidly exhausted and in pain. I think all the emotional stuff I have to deal with right now are not helping at all.

My H is now back from his week pissing about in the USA. His parents are really embarrassed at how crap he was at contacting us while he was away. Apparently he couldn't use FaceTime on the conference hotel wifi and was unable to walk to Starbucks to use the wifi there even though he managed to walk there for breakfast and this also made it impossible to phone and speak to his 3 year old son who missed him. He's being an arse to me really, but that's no change really. There's still a hold on £1500 in our account from his hotel bill nonsense and apparently it's all my fault because I haven't checked the bank balance.

I just spent an hour or so talking to FIL about it and crying loads. He was really supportive and keen to stress that he considers me and the boys family and that will never stop. He also advised me about making sure I'm OK and thinks I'm doing exactly the right thing in trying to get a job in this city, not least because it means I no longer have to wait while H tries to get a job elsewhere so he can run off an be single decides what he wants to do. You know it's bad when your FIL is advising you on how to make sure his son can't fuck you over.

H has been less than forthcoming about what he got up to while he was away. It's all about how 'we never got in til 3/4am', 'I went for breakfast with some people', 'i was sitting next to someone i know on the plane' and (about his room) 'well it was just me in there'. This is odd as it's either detail you'd never supply (I knew he wasn't sharing a room) or there's a suspicious lack of detail when I do actually know (most of) the people he was with. He did manage to get in some sort of dig about how i wouldn't have enjoyed it anyway as it was sitting around in the conference all day every day then standing about all night til silly o'clock (and i can't do that because i am ill). I am not starting a thread in relationships about this as I don't have the energy for it. We're scheduled to go to therapy tomorrow and I'm dreading what he's got in store for me to hear when we go.

Take your fils advice.
There is a great a quite that the fantastic people on the relatio ship boards use...
"When someone tells you who they are, listen"
He is an excuse of a man and you and your ds deserve much, much
Better x his own father is telling you that!

I have just ordered some Epsom salts for my bath in a desperate attempt to help my muscle pain.
They won't help the bulging L3 disc, but I am really hoping they help with the rest!
I - stupidly - fell over the kids bloody toy train set yesterday morning and now my whole foot and ankle are swollen and hurting.
Ear is ok, got to carry on with the AB drops til tomorrow.
Am due on so feeling nauseous and tearful. Great.
Also got what I think is thrush?...(sorry if tmi) the area round my bits is sore and red :( been putting canesten on.
Does anyone else get that?
Hope you are all getting some sunshine x

Hello I haven't been on here for awhile because I simply don't have the energy to read all the posts from all the new people on the thread and found myself getting a bit lost.

I'm back at work after my operation but still have an infection and feel awful, dp is being an arse because he's fed up with being off with his back, it's been 11 weeks Im struggling to keep my patience with him and my lovely gp has retired, my house is a mess and I don't have the energy to tidy and I just want to give up

I get thrush often. It's crap.

I know there are great people on the relationships board, but I just can't cope with it right now. I think you have to be in a position to act, otherwise it's just overwhelming. I also can't face the inevitable shagging about/having an affair speculation that would come with it. (Because it's hard to figure out why else he'd be so cagey about who he was with). I'll deal with that as and when I have to.

Right now I need to concentrate on getting a job in this city so that I can take some control of the situation. Once I've done that, I'll be in a position to tell H to properly commit (and stop being an arse) or bugger off (and get on with being disappointed that the grass is not greener). If I work nearby, I can afford to look after myself and the kids, buy him out of the house and get on with living my life without having to rely on him. Tbh, once I've gotten to that point, H will have to radically change his attitude and outlook as I won't need him for anything any longer. Certainly, H's convenient ideas about swanning around the world doing what he likes and dropping in on family life when it suits him are not going to happen.

Must be hard with you both ill, smiling.

Oh AU, you sound so strong and sorted and yet so sad at the same time :(
You have hit the nail on the head, he will soon find out that the grass is just different grass, not greener or better.
I really hope,you find something job wise soon x

I've applied for 2 jobs. One of them will be bloody lucky to get me (let's hope they're smart enough to recognise that). The other is comparable to my current job. Hopefully I'll get one of them. I just can't move the boys as they're so settled, so I have to make sure that I am in a position to do it all myself.

I'm glad I sound sorted, as I feel far from it. I feel a mess. And it's easy to have all this resolve until I'm faced with H and have to deal with the fact that, despite everything, I do love him. But I can't live in limbo, and I figure it is best to have certainty and control over as much of your own life as possible. I can't make him want to be here and with us. And I can't make him happy. Only he can make himself happy (and he seems determined not to be).

No, you can't make him happy.
Is it classic mid life crisis do you think?
Whatever, it is hugly unfair in you and your ds.
:(

Well, I guess it could be a classic mid-life crisis, except that he's 29! He's turning 30 next week but it hardly seems worth having an early mid-life crisis over (I'm 32, so it's not like I haven't already turned 30).

Ah.
So he is just a knob then?
:)
I turned 40 last year and I have been having a mini one I think, but more to do with how the next few years might pan out wrt work, health kids etc.
On days like today (no dc) I have sat on the sofa all day watching bad tv and apart from a trip to the shops and sorting some washing out, that it.
How in earth do I think I will ever manage to hold down a job?
I am an idiot.

That's worth having a mid-life crisis over. An actual, real problem and everything.

Today I have done almost nothing. I marked 3 essays. Yes, 3. I'm supposed to be able to do 2 an hour or something and I managed 3 essays. I haven't even finished the comments for the third one, actually. So 2.5 is a more accurate description of my achievements. I have load to get through and an immovable deadline so I have to pick up the pace.

H insisted I went out with him and sat in Krispy Kreme donuts for 2 hours tonight. I had to work really hard to stop myself falling asleep at the table. So now I'm going to bed to sleep. I had the world's least satisfying donut too. It had minuscule amounts of filling and no glaze so it wasn't even sweet. It was like chowing down on crap bread.

You're not an idiot, btw. Being bloody exhausted is a completely different thing. I think it's easier to get over idiocy, and it certainly doesn't seem to prevent one from working. Indeed, in most places it seems no barrier to promotion!

:) ha! Yes you are right there!
Sorry of are finding things so hard ATM AU. Wrt to the donut thing...what would have happened if you just refused to go and had a warm bath and went to bed?
Today I have to get stuff done...I have to take some trousers to my mum to fit that need altering so I can alter them. Why she buys trousers that are too long for her I will never know! Then I must put a hair dye on my hair - I went grey at 17 so it's a very necessary job. I wouldn't be too bothered but it's my uncles funeral tomorrow and I don't want to go with dodgy roots :(
Ds2 is at pre school all day today so will need an early night at least!
Dh got to South America ok, but they lost his luggage...he is less than impressed.
My sympathy is somewhat limited as he sent an e mail to the boys boasting about having seen the amazon and that it was 26 degrees :)

belleshell did your mum appeal to try and get in the support group? What is she going to do now? I know we definitely won't qualify for the income related one because of DH working. The annoying thing is I done the benefits calculator based on me being a lone parent and we would be sorted! I won't do that as I am not breaking up our family and messing the kids around, but it is shit that that is the reality of our situation.

I actually don't know how we are going to manage. We live in a tiny 2 bed house shared ownership house, that we got before we had DD. We have a DS and DD sharing a room and whilst they are young it isn't a problem but its not something we anticipated being long term. We have been saving as much as we possibly can with the view of moving next year although it would be another shared ownership, but a 3 bed with some space to actually have a table and chairs but now we can't afford any more payments each month and I don't think we are going to be able to do it. The money we get now allows for an increase in our rent and mortgage but come next year there is just no way and we can't save a bigger deposit. There is no room to extend and the loft is too small to convert so it looks like we are up the creek. Does anyone have any advice or ideas? I am seriously stressing about it all. Our children with have no quality of life and things like buying them clothes and shoes will start becoming an issue.