ME/CFS LINKS & INFO (*NICE Guideline Judicial Review High Court11/12th Feb 2009*)

Millburn_farm

I have ME; have had for 17yrs

I get high rate mobility indefinitely (awarded 7 yrs ago) and have very recently gotten a 5yr IB50 award

My advice; when it's time to fill in the forms;
1) Get proffesional (CAB or Advice worker support)
2) Take a few hours to be totally honest with your-self
3) try to tell the benefits people just how it is

I used my computer with my IB50 form and printed off what I wanted to say; it mean't no spelling mistakes I also talked and listen to my healthy friends and my step-kids, to remind myself what being well was like



As for the "therapies" well !!!!! what to say; I remember one that seems to have died; but was 3-6 yrs ago a biggy; reverse therapy; I live a few miles from where it started; and my Dr's who actually know me (side effect of rural Scottish life) never ever suggested it; the other versions I push myself anyway; as do most people I know with this illness; we push, we manage emergencies; we collapse

We are usually doers, and doing makes us happy, so being "cured" but only til the up outweighs reality

Nice I live in Scotland; bored:p

mardatha

I'm rural Scotland too, is nice when you have the gp who knows you and your family. But mine just sits back in the chair, folds his arms and says THERES NOTHING I CAN GIVE YOU lol! They once sent me to Edinburgh to an infectious diseases specialist at teh western general. God knows why -- I think they were desperate to get rid of me.
After about 2 hours of questions/poking/prodding he told me I wasnt infectious. LOL !

CJ

Rural Scotland too. Big problem when your GP thinks they know you even if he doesn't see you for 2 years. At one point 25 years ago one of them did think about sending me to the Western infectious diseases specialist but he lost interest, did we have the same Dr??
We had a speaker that came to our group to speak about Reverse Therapy but she wasn't allowed to discuss any of the details with us which made a lot of sense. Another womans daughter had done it but wasn't allowed to discuss it with her family as it would undermine the therapy I do know that the 2 originators of the therapy split and opened separate ventures because they didn't agree so that didn't give much confidence

mardatha

Anything that aims to train my mind can go and fiddle. My mind isnt the problem, its the bloody rest of me !

CJ

My language on the matter would be much stronger but I don't want to be banished from the forum!
My neighbours all seem to think it is mind over matter and the more they tell me this the better I will get. Maybe one day if I allow myself to fall flat on my face in front of them and hang the pride and embarrassment they will get the message

daska

CJ wrote: »

Maybe one day if I allow myself to fall flat on my face in front of them and hang the pride and embarrassment they will get the message

Don't count on it. Last year I collapsed outside my next door neighbours house and was there for an hour and a half before someone was prepared to stop and help. During that time I heard people go past berating me for being drunk :mad:.

This neighbour had a drive and they had three cars - the neighbours the other side also had three cars. If this were me and someone disabled moved in next door and was waiting for a parking bay I'd have been offering my drive to them to use in emergencies. But he and the other neighbour ganged up to make life as difficult as possible from day one. They were so awful that on more than one occasion they deliberately stopped me parking in empty bays outside where we lived.

Two weeks after I collapsed I got home and couldn't park anywhere near where I lived but didnt' have my phone to call for help. I parked in front of his bay - between his daughter's and her boyfriend's cars. I had literally just got in through the front door and was handing the keys over to DH to move the car when my, ever so helpful and pleasant, neighbour started yelling at me. He didn't want to go out, he just wanted me to park on the pavement on the opposite side of the road - but walking that distance was what had led to my collapsing before - and he knew it:mad:

CJ

Well as I have mentioned before my husband of 20 years retired from the police in May and left me in Nov because he needs his freedom and to think. Still thinking 3 months on no-one offers me any help. I don't drive and he was my main 'carer' in as much as he was responsible for my mobility and the shopping but I did everything else for him. I have to ask my neighbour in his 80s to drive me to the local shop when he goes otherwise that's about it.
I am surrounded by people I have known most of my life and they wouldn't miss me if they didn't see me for a week which is very scary.I now speak to the cat and dog more often than a human being, maybe thats a better option!

Mojisola

CJ wrote: »

Well as I have mentioned before my husband of 20 years retired from the police in May and left me in Nov because he needs his freedom and to think. Still thinking 3 months on no-one offers me any help. I don't drive and he was my main 'carer' in as much as he was responsible for my mobility and the shopping but I did everything else for him. I have to ask my neighbour in his 80s to drive me to the local shop when he goes otherwise that's about it.
I am surrounded by people I have known most of my life and they wouldn't miss me if they didn't see me for a week which is very scary.I now speak to the cat and dog more often than a human being, maybe thats a better option!

Have you spoken to anyone at Social Services? You are entitled to help if you need it.

CJ

My ME nurse specialist has asked for a joint assessment by the social work dept but that hasn't happened yet and as he is the only one in Scotland he only has time to see me once a month and can't give me the support he would like. GP not interested says he will see me in a few months, nothing changes on that front so I shouldn't be surprised.
I have just been awarded DLA on first application but I don't know how long 'the thinker' intends to keep on paying the bills so it may have to go towards that and not therapies and taxis and the stuff it should have been going on that would make me more independant
Just in limbo at the moment

daska

Magenta wrote: »

I have had M.E since 1994. My dear husband also went away to think, can't blame him really as I also had my first lot of cancer at the time. Poor, poor man.

I live in the UK and am totally alone, I have tried to find out what help there is available, but there is none and it seems to be impossible to find any!! I have to order my shopping on the Internet and it is left outside my front door. Risky I know to leave it outside, but I have no other solution..You would think that neighbours would wonder about seeing shopping outside for days at a time. I was ill for almost 8 weeks with pneumonia last year and there were a couple of parcels outside for all that time. Makes you wonder.
I think they see me as the mad woman who never opens her front door...in fact I heard them saying so one day a few years ago.
So where is that miracle cure? lead me to it please....:(

If only there were...

What really gets to me about neighbours is that I've had such wonderful neighbours nearly everywhere I've lived. So why do we have these pockets of nastyness.