Re:aging with CFS/ME

[Guest guest]

Sorry to say that of late I have only been " lurking " here, but now I have a

request:

I am 77 yrs. old...contracted this darn disease in the winter of 81/82, and

led a support group for several years while in Florida.

I now have many medical problems, as well a the problems of aging.

I blame most of my health problems on CFS/ME and/or the medications I have

taken to fight it.

For years my hope that a cause/cure for this illness was all that kept me

going....but my hopes have died in the past few years.

If I posted to the list, I would have nothing positive to say.

What I need so badly right now is to find some other " senior citizen " who

has had this DD for 25+ years with whom I could exchange notes.

If you are out there please drop me a note :janco@....

Kind thoughts to all of you.

[Guest guest]

Jan

Glad you posted not in that position as I am only 28 and have had CFS since 02

and glanular fever in 99 but I do have other disabilities and I have come to

terms with the fact that at this point there is no cure (sorry to say that but

its true) I think most people with this condition manage their symptoms to have

some kind of qulity of life and basically that is what I try to do. it is made a

lot worse cause I also have generalised dystonia which causes spasms and tremors

and movemnts and I have to use a wheelchair for mobility. Trust me the comments

and the way I am treated by people in the community is WORSE than having to use

the wheelchair. I hate that part of it the stigma and stereotype part its

disgusting.

Anyone else feel this way?

When people tell me that in my position I should be placed in a nursing home god

knows why i would do THAT! I am married and 28 I live in the community in my own

home which I purchased when I was 19 when my mum passed I have lived here since

I was 8 years old and I am surviving. MY husband has epilepsy and he had

seizures a couple weeeks ago and is not 100% and the stupid agency doesn't see

this as an issue. BUT I have an advocate and I also have an MP (I am in

australia by the way) and I am trying to get into a different agency with better

care.

So while I am not your age I just wanted to say hi and say welcome to the group

and I hope you find someone else in your position. I reckon I have been thru it

all i am only 28 yo

from

----- Original Message -----

From: Jan Couture

Sorry to say that of late I have only been " lurking " here, but now I have a

request:

I am 77 yrs. old...contracted this darn disease in the winter of 81/82, and

led a support group for several years while in Florida.

I now have many medical problems, as well a the problems of aging.

I blame most of my health problems on CFS/ME and/or the medications I have

taken to fight it.