Myalgic Encephalopathy (M.E.), DLA & debt

bigzippy

Good luck for the medicals. I had mine a couple of weeks ago and got really upset afterwards cos it suddenly dawned on me just how ill I was! Sounds ridiculous doesn't it? But just doing the simple: stand, lie, lift, arm up etc etc was enough to knock me really sick and dizzy and I hadn't realise I was that feeble... IYKWIM.

I've recently been awarded the lowest DLA but no mobility. I went to CAB and spoke to their "specialist" in the area - who told me it wasn't worth trying to appeal as they'd just end up taking off me what they'd just agreed to give me! She spoke about it as though £17/wk was a fortune... :rolleyes:

Seakay

My sister has had ME for some years now, and has found a lot of good information and advice on http://www.foggyfriends.org/

"

Foggy Friends is privately owned and was largely funded and created by two ME/CFS sufferers, Daniel & Tigger. Our aim was to provide a place where ME/CFS sufferers, their parents, carers and friends could all unite and gain friendship, help and support.

Some people have gone against our wishes and have caused many arguments, much upset and bad feeling which left us no option but to close registration which has left the genuine people who need support isolated.

Registration is now open although we will not hesitate in banning trouble makers or closing registraion if we need to in the future. Please remember, membership at Foggy Friends is a privilege and not a right."

fiestafantastic

Tobruk
Hi Tobruk I did appeal and it was upheld. I managed to claim severe disablement bemefit instead which I still get but is not open to new applicants. I am very worried about this new benefit because SDB is comes under Incapacity Benefit (even though I am not eligible for free prescriptions) and if they want to move all current claimants on to it what will try to do with us. If they assess according to what you are able to do, I can do things at home with periods of rest in between but evem one of their advisers couldnt find me a job like this. Also there is competition for these very rare work at home jobs so I am really worried as they are not on your side by giving you advice to help rather to save the government money.

MediSin

Ames wrote: »

The council houses round here are more likely to have damp and mould, minne's terrible for it and I know others have the same problem. Most people in council houses can only dream of double glazing!

Please don't be put off applying for housing! A lot of it depends where you live. Our council sold off all their properties to housing associations 5 years ago, but I got my flat while it was still council. It's bloody fantastic. I have a decent sized flat with a nice big kitchen, whereas all the proper houses round here have those nasty depressing little galley kitchens. The rent is hugely cheaper than private renting (I pay less for my 2 bedroom flat than I used to for a mangy bedsit with a leaky toilet and no hot water), the lifts almost always work, there's security cameras and good parking and double glazing, and heating that works. Best thing is that if anything needs fixing, they do it really quickly and I don't have to pay for it. So it's always worth investigating council or housing association places.

I was brought up in north London, quite near a terrifying council estate where everyone got mugged and stabbed and 12 year olds would hassle you to buy crack, but they are not all like that, honestly! (esp. outside London...)

Give it a try - it's cheaper, you don't need to save up a deposit, they are governed by rules (unlike private landlords who do whatever they want), and if you're on benefits, it's just easier than private renting. Don't let the stereotype put you off

Ames

Wow, people on my estate can only dream of all that! I prefer living here as the people are great and there's a real community. I just wish I had decent heating, no mould and a kitchen big enough for both a cooker and a washing machine. Double glazing would be fab too!

hjb123

phew, have just had the letter through today to say my IB is continuing and that I passed the medical, am so relieved

bails

That's great news hjb, really pleased for you! Just sent my DLA form back so we'll see what happens there...

bigzippy

Congrats hjb. It's such a relief innit!

MissLauren_2

just wanted to add ive had ME since i was 13- took 8 years to be diagnosed in which time i had to leave school and have since been housebound- went through the usual 'its in your head, its your age' routine and have seen alsmot every unit in my local hospitals, as well as private and out of area- have managed to rack up 6 different illnesses now but help for none of them- but I have managed through distance learning to do 3 as levels and am now 1.5 years into a psychology degree with the OU. I also work for various charities from home including the me charity mefreeforall.

Have had all the similar experiences i think anyone with a hidden or non hidden disability has- being questioned if you really are ill, is it all in your head, how can you be ill- you look fine etc- was recently shouted at when my mum (the only way i can leave the house is if she can drive me and its not a long distance to walk) parked for my hospital appointment in a disabled badge sapce (i have a badge) when i got out, a woman started shouting at me because i wasnt disabled and cant park there and why should i get free parking etc etc- i felt absolutely awful and will admit to bursting into tears once i got round the corner- felt all sick and awful and havent been out since!

As for the name- theres still the debate over whether CFS and ME are seperate illnesses- i dont know tbh, i say ME to most people because chronic fatigue doesnt represent all of the various symptoms i have and ive found in my experience, people belittle it with 'well your just tired then' when in reality there are times during very severe relapses when i cant swallow, can barely move and cant stand and i know alot of other people who dislike the name CFS for the same reason especially the carers of children with severe ME, as its a life destroying illness and people wrongly assume your just not sleeping properly (the chance would be a fine thing!)

Thought i'd point out a few good ME charities in case you havent heard/seen them including the ME Association, Action for ME, AYME (the assocation of young people with me) and Tymes Trust (the young ME sufferers trust).

Just thought I'd add my little bit- always lovely to find other people who know what your gonig through (the OU ME forum is a godsend- we can all sit and moan about things no one else would understand like when you really really want a cup of tea but know you cant actually make one!)

bigzippy

MissLauren wrote: »

Have had all the similar experiences i think anyone with a hidden or non hidden disability has- being questioned if you really are ill, is it all in your head, how can you be ill- you look fine etc- was recently shouted at when my mum (the only way i can leave the house is if she can drive me and its not a long distance to walk) parked for my hospital appointment in a disabled badge sapce (i have a badge) when i got out, a woman started shouting at me because i wasnt disabled and cant park there and why should i get free parking etc etc- i felt absolutely awful and will admit to bursting into tears once i got round the corner- felt all sick and awful and havent been out since!

I can completely understand, I feel awful when people look at me with that "you're only young" look...or even worse, say it. (I'm "only" 26) Don't let the barstewards get you down though.
There's some debate as to whether fibromyalgia is a symptom of ME, another condition, or wrapped up in the ME package -but either way I have that on top of ME and have found the fibromyalgia forum on here very good, come join us if you like? There are people on there without diagnosed fibro but with very similar symptoms. Like you said, it's nice to know you're not on your own.