A Letter to Normals from FMS person

[Guest guest]

A Letter To " Normals "

Having FMS/MPS/CFS means many things change, and a lot of them are

invisible.

Unlike having cancer or being hurt in an accident , most people do not

understand even a little about FMS/MSP and its effects, and of those that

think they know, many are actually mis-informed.

In the spirit of informing those who wish to understand......

These are the things that I would like you to understand about me before you

judge me....

- Please understand that being sick doesnt mean I'm not still a human

being. I have to spend most of my day in considerable pain and exhaustion,

and if you visit I probably don't seem like much fun to be with, but I'm

still me stuck inside this body. I still worry about school, and work and my

family and friends, and most of the time I'd still like to hear you talk

about yours too.

-Please understand the difference between " happy " and " healthy " .When you've

got the flu you probably feel miserable with it, but I've been sick for

years. I cant be miserable all the time , in fact I work hard at not being

miserable. So if you're talking to me and I sound happy, it means I'm happy.

That's all. It doesnt mean that I'm not in a lot of pain, or extremely

tired, or that I'm getting better, or any of those things. Please, dont say

, " Oh, your sounding better! " I am not sounding better, I am sounding happy.

If you want to comment on that, you're welcome. Please understand that being

able to stand for ten minutes doesn't necessarily mean that I can stand up

for twenty minutes ,or an hour. And, just because I manage to stand up for

thirty minutes yesterday doesnt mean that I can do the same today. With a

lot of disease you âre either paralyzed, or you can move. With this one it

gets more confusing.

-Please repeat the above paragraph substituting " sitting " , " walking " ,

" thinking " , " being sociable " and so on.... it applies to everything. That's

what FMS/MPS/CFSdoes to you.

-Please understand that FMS/MPS/CFS is variable. It's quite possible (for

me, its

common) that one day I am able to walk to the park and back, while the next

day I'll have trouble getting to the kitchen. Please don't attack me when

I'm

ill by saying " But you did it before! " if you want me to do something then

ask if I can. In a similar vein, I may need to cancel an invitation at the

last minute, it this happens please do not take it personally.

-Please understand that " getting out and doing things " does not make me feel

better, and can often make me seriously worse. Telling me I need a treadmill

, or that I just need to loose (or gain) weight, get this exercise machine,

join this gym, try these classes... may frustrate me to tears, and is not

correct....if I was capable of doing these things , don't you know that I

would? I am working with my doctor and physical therapist and am already

doing the exercise and diet that I am suppose to do. Another statement that

hurts is, " You just need to push yourself more, exercise harder... "

Obviously

FMS/MPS deals directly with muscles, and because our muscles don't repair

themselves the way your muscles do this does far more damage than good and

could result in recovery time in days or weeks or months from a single

activity. Also, FMS/MPS/CFS may cause secondary depression (wouldnt you get

depressed if you were hurting and exhausted for years on end!?) but it is

not

created by depression.

-Please understand that if I say I have to sit down/lie down/take these

pills

now, that I do have to do it right now...it cant be put off of forgotten

just

because I'm out for the day (or whatever). FMS/MPS/CFS does not forgive.

-If you want to suggest a cure to me, don't .It's not because I don't

appreciate the thought, and it's not because I dont want to get well. It's

because I have had almost every single one of my friends suggest one at one

point or another. At first I tried them all, but then I realized that I was

using up so much energy trying things that I was making myself sicker, not

better. If there was something that cured, or even helped , all people with

FMS/MPS/CFS then we'd know about it. This is not a drug company conspiracy,

there

is worldwide networking (both on and off the Internet) between people with

FMS/MPS/CFS, if something worked we would know.

-If after reading that, you still want to suggest a cure, then do it, but

dont expect me to rush out and try it. I'll take what you said and discuss

it with my doctor.

In may ways I depend on you....people who are not sick....I need you to

visit

me when I am too sick to go out....Sometimes I need you to help me with the

shopping, cooking or cleaning.

I may need you to take me to the doctor, or the physical therapist. I need

you on different levels...you're my link to the outside world...if you don't

come to visit me then I might not get to you .

and, as much as it's possible, I need you to understand me, and still love

me.

I miss my former life...I miss everything I used to do that I can't now. I

grief for

those things.....in a way you cannot understan.

Please just be there.....