Re: loss of friends/family

[Guest guest]

Hi, I don’t know if I’ve ever

posted before, but I read

often, when I am well enough

to do so. I was really struck

by the question of family and

friends and how they relate to

CFIDS/ Fibro. This is the

story of my life, or that’s

how it feels to me. First of

all, my sister (who has fibro)

has no respect or

understanding of my

CFIDS/Fibro at all. She thinks

I should be up and about and

fighting it. I have been sick

for over 12 years and am now

on two canes and barely get

around at all. My boyfriend of

17, almost 18 years has always

had a low tolerance level for

my problems and I have no idea

why he stays with me, except

he may realize that if he

leaves I will most probably

die since I live in Vermont

and have no way to do most of

the things it takes to spend a

winter here. In 2006 I had a

serious break in the left

humeris involving nerve damage

and he had absolutely NO

patience or understanding of

that at all. It was all about

him and he couldn’t see

anything about my situation as

being a problem. I only have a

couple of friends left but I

do think they will stick by

me. They stuck by me through

everything else. (I have lost

two of my three children to

death.) The rest of my friends

are gone. I never get out, or

hardly ever. I HATE this

disease.

I noticed the Provigil

discussion. I have had

considerable success with

Provigil and now, after three

years I am finally out of bed

and able to sit in a chair all

day long. For a while I was

able to do a 10 hour a week

job (low stress, maximum

enjoyment) until the broken

arm. The problem with Provigil

is the price. With the value

of the dollar now you can’t

even afford it in Canada (and

I live only ½ hour from the

border). Most Canadian doctors

don’t want to deal with

Americans any more anyway. I

know this has sounded like a

giant whine – but I am coming

to the end of my rope. I have

no REAL support from anyone in

my family or close loved ones.

I have two friends and a

physical therapist who

understand me and who care

about me which is something I

am extremely grateful for. It

would be a big help if those I

saw every day would be a bit

more compassionate and

accepting and understanding in

terms of what CFIDS/ME/Fibro

does. They seem to think I’m

having a good time. Can you

believe it? Thanks for

listening, Taffy

" And the consequence of our

existence

Is the reason for our

being. "

Stuart Todd 5/27/71 -

3/13/90

" God be between you and harm

in all the

empty places you must

walk. "

Jill Riley 4/24/63 -

10/12/00

[Guest guest]

Taffy..first off you aren't alone. I'm Joi and am in Mass. I can

appreciate the things your family are putting you through. Mine has

the same attitude. Their idea of helping me is " retail therapy and

breakfast " What was needed was the ER and my cardiologist. The one

person that I thought would have the hardest time with it was my 86

yr old dad. He has been there when I have lost sensation in both my

feet and 1/4 up my legs. [the drs have no clue why]

Are you receiving Medicare or SSI ? if not why? Speak with you dr or

therapist about it.

I understand the feeling of being alone in this one...but you are not

alone..I am but an email away. I am not going to let you give up.

nope thats not even in the cards.

joi

-

-- In CFAlliance , Taffy Todd wrote:

>

> Hi, I don't know if I've ever

> posted before, but I read

> often, when I am well enough

> to do so. I was really struck

> by the question of family and

> friends and how they relate to

> CFIDS/ Fibro. This is the

> story of my life, or that's

> how it feels to me.