Winter fuel payment petition

seven-day-weekend

I'm sorry Trilia if I have not understod your condition. Sorry to jazabelle too. I suppose it's like my feelings about the menopause; I have sailed through it so when other people complain I wonder what all the fuss is about. I suppose we have to accept that people suffer differently.

One thing I have had for over thirty years is Restless Legs Syndrome. This is a little-known and little-understood condition that you can't even explain to people properly because the symptoms are so wierd. You can see them thinking 'well if she has to keep moving her legs, why is that a problem?' And you try to tell them that it means you can't lie in bed so you don't get any sleep; you have to keep walking around so you don't even get any rest - I have had a week go by sometimes with no sleep and then fallen asleep (in the daytime) from sheer exhaustion - that it can really diminish your life because your head is in a state due to the sleep deprivation - but people don't understand, why should they?

So what I'm trying to say is I suppose if someone says their condition is a disability, even if another person does not find it so, then to them it may be and we should accept that. I'm sorry for dismissing one of your conditions as 'simply' painful periods, it would be like saying my Restless Legs are merely 'fidgety'.

I'm glad to say that I now have what I call my Magic Tablets for my RLS, they are a very low dose of a Parkinson's drug (although it's not related to Parkinson's), they have only been licensed for RLS treatment for a couple of years, and they are wonderful. I still get RLS but it is normally just for the hour before my next tablet is due, and the occasional bad night, I can cope with that, the relief is indescribable.

I'm sorry again that I was less than gracious to you.

jazabelle

seven-day-weekend wrote: »

I'm sorry again that I was less than gracious to you.

I really appreciate that post, thank you. That's what we've been trying to get across.

RLS does sound like a horrible condition, and yes it is very much like someone dismissing it as nothing when you know how awful it can be.

I'm very glad you've found some relief - it must be an amazing feeling.

krisskross

Trialia wrote: »

krisskross - regardless of your sarcasm, it would depend on whether you actually need help with care and mobility or not as to whether you were entitled to anything financially: disability in itself, as you are undoubtedly aware, is not an automatic passport to DLA.

I don't want any money. Just seems odd to me that I could conceivably be regarded as or describe myself as 'disabled'.

Trialia

seven-day-weekend wrote: »

I'm sorry again that I was less than gracious to you.

Apology accepted.

I doubt I could understand what RLS is like for you, but I do know how it feels to go through days feeling as though you haven't slept at all, whether you have or not, so I can sympathise there. I get some muscle twitches, especially when I'm dropping off to sleep, but they're not usually bad enough to keep me awake like that. I'm glad that you have found something that's treating it properly.

Trialia

krisskross wrote: »

I don't want any money. Just seems odd to me that I could conceivably be regarded as 'disabled'.

I didn't think that you did, I just thought it was worth saying. But yes, it's a weird feeling when it's first put forward to you, isn't it?

Been a long time since I lost my discomfort with the idea and learned to accept it - I was more or less forced to, as I became steadily more ill - but I do remember what it was like the first time I realised that there were things I used to do that I could no longer even entertain. Not quite the same thing, but just as weird.

tenmah

krisskross wrote: »

I don't want any money. Just seems odd to me that I could conceivably be regarded as or describe myself as 'disabled'.

You really don't get what people are saying do you?

If ignorance were a disability, you would definitely be paid for it

seven-day-weekend

I know of one person with severe RLS; she had had no sleep for ages and was meeting her fiance's parents for the first time - and fell asleep at the table with her face in her pudding.

I wouldn't call it a disability but it certainly affects your life.

tenmah

seven-day-weekend wrote: »

I know of one person with severe RLS; she had had no sleep for ages and was meeting her fiance's parents for the first time - and fell asleep at the table with her face in her pudding.

I wouldn't call it a disability but it certainly affects your life.

Oops, how embarrasing! Bet they have never let her forget it

krisskross

tenmah wrote: »

You really don't get what people are saying do you?

If ignorance were a disability, you would definitely be paid for it

Sorry what is it I don't get? Elucidate.

seven-day-weekend

tenmah wrote: »

Oops, how embarrasing! Bet they have never let her forget it

Even I, knowing what severe RLS can be like, laughed when I heard of this, because of the images it conjured up. But really, to fall asleep like that because a physical condition causes sleep deprivation to that degree, is not actually funny at all!