Re: Lying about CFS

[Guest guest]

Yes one gets " battle fatigue " I think, from constantly having to not only

have our lives and bodies blasted apart, but having to fight the good fight

relentlessly. I have been known to flat out lie when it wasn't important and

say " MS " , but mostly I just say " a neroimmune disease " these days. It's

easier and I don't have to waste my energy standing around (at the store or

whatever) explaining. Just tired of it. It's really too bad you had to have

surgery with docs that don't understand ME as these things impact on the ME

- anesthetic and the trauma of the surgery itself. I wish you a good

recovery and better days ahead. And hey, you don't have to lie here. This is

the place we can be ourselves. Take Care, Aylwin xox

[Guest guest]

Well I can relate to that. I don't have CFS but I have Fibro. I have

limited energy and because I try to take as little pain meds as possible I'm

often too sore to do a lot. My energy has to be saved for working because

if I don't work I don't eat etc. So my house is a disaster area. I know

people don't really understand because I don't look like there's anything

wrong with me. So they just think I'm a slob. So I don't have people over.

I don't have energy to go visit anyone or hang out after work so I spend

alot of time with my neighbours sitting in the courtyard at night and that's

about it. I have online friends...most of whom are fellow sufferers with

chronic illnesses and I have one Christian Woman's group that I belong to

that are very supportive. Some days my computer is my lifeline because that

s the only time I can " talk " to people that understand what I'm going

through.

Bel

[Guest guest]

I, too, say 'Myalgiac Encephalomyelitis ('....and they all moved away

from me on the bench...' if you remember that somg by Arlo Guthrie..),

but THEN I say -with disgust in my voice- known here in the states as

CFS and then blah-blah I can go on if they ask me about it. sometimes

I'm amazed to meet others who know someone with it. other times,

someone who had it and is in remission, but usually it's .. well, I do

not have many friends. And -this is sick,I guess- I am almost USED to

it.I am the weirdo who talks to the dog. Although we DO have alot of

dog owner and dog friends at least...

Love, Jane, one with the hound

> I haven't lied, but I do opt for the Myalgic Encephlomyeltis

>explaination rather than saying CFS. I find that ME sounds more

>serious than saying I have " chronic fatigue " . I have also used the

>definition rather than the diagnosis when telling people what

>is " wrong " with me. Instead of CFS, I say " I have something wrong

>with >me neurologically. My brain doesn't produce the proper

>chemicals >that >are needed to function normally " . That one usually

>gets >recognition >and understanding.

> I certainly wouldn't feel bad about " lying " . However, I would pick

>something a little closer to the truth lest your new friend feel like

>you were completely misleading him/her. Saying you have

>a " neurological disease " is a good way to put it and it's a kin to the

>truth.

>

[Guest guest]

Hi Jane, I call it " falling down the rabbit hole " these days LOL..YES end

state AIDS, and I do know people with AIDS, who get all kind of services and

attention and expert treatment.and can run circles around me - same with MS

except in terminal stages.it's like this disease takes us up to the brink of

death (for us more severe types anyway) over and over - we walk through the

valley of the shadow.all our lives..good you could share so honestly with

your daughter. Yes we want to be strong, but kids always know when we BS

them. My poor kids were only 3 & 5 when I got sick, and after several months

admitted they thought I was going to die. I said of course not, but didn't

have a clue what was so incredibly wrong with me at the time. Glad you are

peeking your head up out of that hole! TC, Aylwin xox

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of Jane

Sent: Wednesday, June 13, 2007 9:33 PM

To: CFAlliance

Subject: Re: Lying about CFS

It's funny, I'm just coming out of a 'crash' as I call them, aka: THE

HOLE!!!

After one of my 16 y/o daughters friends had seen me twice over the weekend

( looking like crap as we do lol), she must have asked Miranda if I was

'sick again'.......Miranda said to me " Mom, I don't really know what happens

to you, so when my friends ask me, I just tell them your symptoms "

I realized how hard it was to really put into a nutshell, one that teenagers

will understand. I told her that was fine, just tell them my symptoms,

because in all honesty, I'm not really sure what actually happens either.

[Guest guest]

Jane,

The first main symptom I knew was Fatigue and yet I now have the

neurological symptoms of ME of which I was diagnosed. I wonder if in

many cases...one leads to the other? Food for thought anyway.

/Duthchie

p.S. Speakin of which, I am really wiped out now, goin to rest.

>

> I gotta admit, I have started using myalgic encephalomyelitis, just

because

>

> a) I figure it is the closest thing to the truth, if not THE

truth (with all the data, I'm still a bit lost! sorry)

>

> it " sounds serious " . I'm NOT demeaning ME becuz it IS VERY

SERIOUS!!!!! 99% of the general public have NO IDEA how serious it

is, but they know it " sounds " bad , it sounds REAL !!!! They don't

brush it off, or look at me like I'm nuts, or lazy, or trying

to 'pull a fast one' on the SSA.

[Guest guest]

I DID Aylwin, I DID peek my head out, just briefly, but it was GOOD!

She was 8 when this all started, so I can't imagine how scared they REALLY feel.

I know she was always much more visibly shaken than either of her older brothers

and she has just become accustomed to helping me out. Yesterday, I took her and

a girlfriend out to pick up new swimsuits, I could feel the crash coming, you

know the feeling, weak in the knees, wobbly, slurring words, dizzy, ears

screaming and just about to pass out, so I fumbled my way to the snack bar and

she came and helped me to the checkout, put out her arm for me to steady myself

as I drove her and her gf back to the pool of course! Her gf was very open and

asked me questions...........this was the first time I'd ever Fallen into the

hole right in front of her........she was amazed how fast it happens.

YUP!!!!! Welcome to my world baby! LOL

I know I am truly blessed by having Miranda, she is understanding, not

embarrassed by me in front of her friends, when the words won't come out or are

completely garbled, she smiles and translates for me. SHe is an angel to me

(well...............most days, she is 16 you know! LOL)

Thanks for listening, I'm really just rambling on here. You take good care in

your hole................as I will in mine! LMAO!!!!

STL Jane

Aylwin wrote: Hi Jane, I

call it " falling down the rabbit hole " these days LOL..YES end

state AIDS, and I do know people with AIDS, who get all kind of services and

attention and expert treatment.and can run circles around me - same with MS

except in terminal stages.it's like this disease takes us up to the brink of

death (for us more severe types anyway) over and over

[Guest guest]

Hi again Jane, actually in a way you are very fortunate that Miranda really

got to see it like that. It is a comfort to have a witness sometimes, and

then she really gets it. My daughter Katy was wonderful when I relapsed

living where she does, last year - bussed 1-1/2 hrs (because I could not

drive, too impaired) after work to get me groceries, walk the dogs etc.

Bless our kids hey? Aylwin xo

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of Jane

Sent: Saturday, June 16, 2007 1:35 PM

To: CFAlliance

Subject: Re: Lying about CFS

I DID Aylwin, I DID peek my head out, just briefly, but it was GOOD!

She was 8 when this all started, so I can't imagine how scared they REALLY

feel. I know she was always much more visibly shaken than either of her

older brothers and she has just become accustomed to helping me out.

[Guest guest]

OH, I thank God everyday for her, as I'm sure you do Katy too!

TODAY, is a family reunion, and I have not gone in 4 years, becuz summer is my

hardest time, I don't tolerate the heat at ALL! BUT, I'm a bit weak, aches and

pains everywhere and garbled speech already this morning - and I know it will

get worse- BUT I am going anyway!!!!! Part of it is I know, a bit of

embarrassment, even my closest family members have not seen me at my WORST!

Siblings I mean, and today, EVERYONE is going to see it........I just don't care

anymore. WHY should I be ashamed of it? If it were MS, or AIDS, or cancer, I

wouldn't be ashamed, everyone would understand. I think part of it is the

stigma of the Dreaded CFS title and part of it is facing the fact that I am NOT

the same person they have always known me as: Bubbly, energetic, humorous,

friendly and very social. Then the third part: the EXPLANATION, the looks, the

whispers, that uncomfortable feeling of them not knowing how or what to ask,

when I'm certain questions will be popping up in their

heads.

Wish me luck, off I go!

STL Jane

Aylwin wrote: Hi again

Jane, actually in a way you are very fortunate that Miranda really

got to see it like that. It is a comfort to have a witness sometimes, and

then she really gets it.

[Guest guest]

Way to go Jane!!! Sounds to me (from your post about it) like a true

personal triumph. Love, Aylwin xoxox

[Guest guest]

That is wonderful Jane. I know it must be hard to let folks see you in

your condition, but a relief to know that your family understands now

what you are like and can be supportive. You're right, it is like

coming out. LOL. You sound like you've got fantastic kids, how lucky

you are.

Sandrea

[Guest guest]

Suggest focusing on the blessings instead of the loses. Even if only a

single blessing, treasure it! If you have run support groups and etc.,

then consider how you have helped the lives of others. You have been a

blessing. I don't see people who are " well " running support groups for

CFS/Fibromyalgia. You have done what they won't do. Everyone misses

stuff - there is just not enough time to do it all. Some do more than

others. Yes, you/we are limited much more than average US man or woman,

but you have value, and in your case, you have given to others. That is

commendable with your limitations. Praise you. Bless you. Pat yourself

on the back.

Can't condone lying. Why explain if you don't need to? If you need to

" explain, " just say you have a chronic illness and don't want to go into

it. I actually have interacted with people for years that never knew

anything was wrong with me - just never brought it up. They didn't see

me much, but when they did, I just was. Most people are too worried

about themselves to be concerned about you. The phone is a blessing. I

have developed deep long term close relationships just through frequent

phone conversations. Only need a couple to help you feel alive and

valued.

Maybe you need a different doctor, one that will work with you striving

for better functionality and health rather than one that discounts your

problems and blames you for them.

You are a valuable individual who deserves honor, respect, understanding

and appreciation. If no one else will give it to you, then be your own

best cheerleader. Yeah, Jan. Hugs and cheers for you. May God bless

you and keep you and smile upon you.

On Mon, 04 Jun 2007 21:55:26 -0000 " jan_couture "

writes:

I have fought this DD for over 25 years now. I have run support

groups, researched articles, tried to educate the general public and

nearly every doctor I have met..........and yet no one seems to " get

it " !! And I am so weary of " the looks " and of people saying " you look

great " ! Even my closest friends (of which I have precious few left)

and my family, have little understanding of how much I have missed due

to this DD!