Spoons! Support for those with chronic pain & fatiguing illnesses

[Grockle]

Spoon Theory here

Ledkr and Crapbag, welcome!!! im wondering if i should ring DLA i sent forms in in November had a letter to say they had recieved them but nothing since!!

mmmmm where did i burn put that letter??

Can I join?

Diagnosed with FMS about 10 years ago. Muscle spasms in back so bad that I tried botox injections, which caused nerve damage.

Been really low with a flare up the past few months, seems to be never ending.

I've found HTP helps with sleep (tryptophan - available from health food shops) and have just got a memory foam mattress topper which is helping.

Am one of the lucky ones - although I couldn't work for the first few years, manage to work now but it's just so hard to keep going.

Hello all. . It's nice to have new people, but it's really crap that there have to be so many of us in this situation. It would be much nicer if we were all linked by something nice!

I had my OH doctor assessment yesterday. It was good. He thinks I am fit for work but need adjustments to my workload and the expectations placed on me. He also suggested a sit/stand workstation which sounds very hi-tech! I feel a bit bad because I just applied for another job. It's almost identical to my current job but much, much closer to home. Still in a different city, but we're talking about a commute between (say) bath and Bristol rather than a distance between Glasgow and Dundee (although it involves none of these cities). I also feel bad because they run the two ticks scheme, which guarantees an interview if you have a disability (and meet the essential criteria for the job, which I do). I ticked yes to that because the OH doctor did say that I fit the DDA criteria for being disabled but I feel like some sort of fraud trying to circumvent the whole process and force them to interview me.

There's a job in this city that I need to apply for too (comparable to but not as good as much current job). I feel bad because I do genuinely like my job and my colleagues are great (and my employer is so much better than most people's seem to be). I just wish it was closer to where I live. And I can't move because the kids are settled here (and poor DS1 does not deserve to be made to move again). If only teleporting were an option!

Argh. That first paragraph sounds like something a 5 year old would write. And then the teacher would write something encouraging the use of more interesting words than 'nice'.

so... i rang DLA and enquired about my application, apparently i was sent a rejection letter in Dec........ i never got it, and because a month as lapsed since they sent it i cant appeal but have to reApply......... so i wont be bothering...thia is the second time i have been rejected, 1st timeit was becaose i didnt have a carer ( i lived a 100 miles away from family and friends i could hask to help, in a village with my ex his new girlfriend and all his family that would literally tunr there backs on me in local shop!!) so i made hardest decision of my life upsticked (which menat my DS choosing to stay so he could carry on at his high school) and moved home...im still not eligable, granted i do work (not sure how some day) but i go to bed every afternoon, and im in bed by 9pm at the absolute latest, my social life is planned to within a minute, so i dont end up in bed all weekend...... on a dad day i just dont get out of bed, i dont eat or drink or get washed (minging i know) unless someone helps me!!

sorry aboyt the rant...

AND HELP NEWBIES XX

Hello newbies!

I have a question ladies, I have really rubbish hands, I have bone deformities in both of them, no muscle in one and a partial fusion of the 8 wrist bones in another so they can't be treated the "normal way" and today they really hurt, my bones hurt and they feel like they're on fire.

I was just wondering if anyone on here used hand or wrist supports? And if so what sort? I have hand splints but they're useless for day to day stuff...!

belleshell - the same thing happened to me, I was initially turned down for DLA so appealed and was awarded HRM which was backdated but as I was considered 'fit' by the time the appeal happened it was stopped on that day.
Then a few days later I received a letter saying to reapply for DLA as on further investigation they felt I was still entitled to it. I filled in the DLA form again and sent it off but didn't hear anything, I phoned and they claim to have never received it and sent me another one. By this point I was so fed up I didn't even fill it in and left it for ages until one day I phoned and they said it had been refused and then sent me another form to fill in!
I have sent that one back and got a text message from DWP to say it would take up to 8 weeks.

The DWP are bastards, aren't they!

I'm dealing with my own nightmare forms, committees and 'evidence' thing at work (specific to my field). I need to prove a range of complex circumstances, all of which are accepted under equalities legislation but some of them are impossible to prove. For example, I am supposed to provide evidence that I breastfed DS2 for 2 years and that he would not take milk in any form at nursery when he first started and didn't bloody sleep til he was about 18 months old. They've asked if the nursery he used to attend might have records of the numerous trips I had to make during working hours to feed him when he wouldn't eat anything and was too young for solids. Yes, because they really keep records of that sort of thing for years after a child has left their nursery and moved far, far away.

I've also been asked to estimate the percentage of time I actually manage to work given my symptoms. I said about 80% but the real issue is how effective I am during that time which I optimistically estimated at about 50% of what one might normally expect (although sometimes I struggle to cope with eating, washing and actually brushing my teeth but I guess they don't want me to factor in the times when my productivity is below zero.

It's like applying for stuff from the DWP, although the stakes are quite a lot lower (obviously). But it's the same pretending to care about equality while creating ridiculous administrative barriers that put everyone off.

I have hit the wall. So achy and exhausted.

Had the DCs on my own today, managed to put the tesco delivery away (in 4 short bursts) prepared simple lunch/dinner, threw away a bit of rubbish in the kitchen, and that is my limit :(

Dreading work tomorrow. Also first time leaving DCs with DSD - she is 15 and very sensible but I am still anxious. I will be out for 5hrs.

Gah.
Have got an ear infection, it's not my tooth at all!
So have got AB ear drops.
Am fed up.
I swear even my eyelashes hurt today :(

Anyone else find Fridays generally quite bad?? Fridays and Tuesdays often bad for me.

Yes.
Definately.
By Friday I am on my knees :(

I find Fridays bad too. I've been really unproductive today. I'm just exhausted. The PILs treated us to take away, which was wonderful. Wednesdays and Fridays are bad for me. And often Mondays, after a weekend doing family stuff.

I just want to curl up and sleep now.

Ear infections are grim, grim, grim, badvoc. Hope the ABs help.

Yeah.
I feel pretty sorry for myself :(
Prepare for some very self pitying posts next week from me...dh away in South America for 8 days, my mum has a hospital appt and my uncles funeral.
Sigh.
I hate feeling so sorry for myself.
It's pathetic.
So many more people - inc many of you on here - have things so much worse than me.
Aibu to get a hot after bottle and lie my face on it!?

Yy to Fridays being hard. I think it's the holding it together all week then crash scenario.
I've had dinner and wine and now just want my bed.

neriberi I wear supports pretty much all the time. I'm not sure if you get swelling but I find isotoner therapy gloves fantastic at compressing the swelling. They give some support but not so much that my muscles get weak. When things are bad, I pop wraparound wrist supports on top of them.

Sorry about your uncle badvoc :(

And the ear infection too - thankfully it's easier (and cheaper) to treat than a tooth problem although I know that's little consolation when it hurts so much. You may be onto something with the hot water bottle - what I do is fold up a flannel and soak it in recently boiled water, then compress it against my ear. Pillow gets a bit wet but it does provide some relief. You can put lavender oil on it too.

Hello korma, what's your new meds? How long will you be taking them for before you know if they work?

Glad you've for DLA, I'm sure if I get it I will be just as worried about it being taken away again. Still I would've thought having DLA would make it easier to get ESA? I may be imagining it though.

Thanks fuzz.
How long should the AB drops take to work do you think?
Had an awful night :(

I don't know as I've never had ABs in drop form! But when I take tablets they usually work in a few days. It is VERY important you finish the whole course though even if you feel better.

I barely slept last night. :( I'm pretty sure I have a chest infection. Being on a double whammy of immunosuppressant drugs, I should probably call OOH but I just can't face it. I'm going to go back to bed and see how I feel this afternoon. This couldn't be worse timing.

Hello, have finally given in and come for a whine, as am needy and terrified at the moment.

I've had ME/CFS for 10 years, and have improved from mostly bed/sofa bound to mostly housebound.

And I think I'm about to leave DP. Not his fault, we're just not right for each other. But I can't look after myself independently yet, never mind work.

I've been through so many incapacity benefit and ESA battles, and am in the middle of another right now. I have no idea whether I will get anything, and I don't know where I'm going to live, or how.

Sorry to whinge. I can't actually see a future right now. But it seems a small thing when others are in pain. Much sympathy to crashdoll and fuzzpig and korma and, well everyone, really.

BTW, this is my name for whining in. I've been around since the "Lightbulb moment: M.E.?" thread, but usually use MN for distraction rather than talking about M.E.