A Letter To Normals ~~~ for those who need support system to understand

[Guest guest]

BlankSubject: A Letter To " Normals "

Having FMS/ME 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/ME and its effects, and of those that think they know, many are

actually misinformed.

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 doesn't 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

can’t 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

doesn't 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, don't 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

doesn't mean that I can do the same today. With a lot of diseases you're 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/ME does

to you.

Please understand that FMS/ME 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

were 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/ME 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/ME may cause secondary

depression (wouldn't 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/ME 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 don't 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 were

something that cured, or even helped, all people with FMS/ME 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/ME, and if something

worked we would know.

If after reading that, you still want to suggest a cure, then do it, but don't

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.

The great art of life is sensation,

to feel we exist even if in pain.

~~~Lord Byron

gentle hugs,

Fibronurse aka Pat

fibronurse@...

petfarm@...