Re: Letter to Normals

[Guest guest]

whoops! Thia goes with the Letter to Normals...thought I copied it

with it...sorry!

Mare

This letter was modified (with permission) and published by a

Payne in 1996 to become the " Letter to Normals " . Since then it has

been printed in various publications (with and without permission).

Due to this fact, I would like to state that This " Letter to Normals "

be used to help other people with FM/MPS as long as proper credit is

given to a Payne and to Bek Oberin (Bek wrote the Open Letter To

Those Without CFIDS.) for creating it.

> 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