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.
|