Letter to Normals

[Guest guest]

Having FMS/MPS 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/MPS 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, you're 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 up for ten minutes,

doesn't necessarily mean that I can stand up for twenty minutes, or

an hour. And, just because I managed 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/MPS does to you.

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

(for me, it's 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,

if 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

that 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 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 can't be put

off or forgotten just because I'm out for the day (or whatever).

FMS/MPS 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 was

something that cured, or even helped, all people with FMS/MPS 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, 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 many 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 help

me with the shopping, cooking or cleaning. I may need you to take me

the the doctor, or to the physical therapist. I need you on a

different level too ... you're my link to the outside world... if you

don't come to visit me then I might not get to see you.

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

===========================================

I hope it is ok to post this...so many people have requested it, and

it sure did help me with a lot of people in understanding how i

may...and sometimes may not...work

Mare