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Anyone suffering ME/CFS/FM will be able to identify
with the following extract taken from -:
A Letter to Normal’s from a Person With Chronic Pain
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, sometimes I probably don't
seem like much fun to be with, but I'm still me, stuck inside this body. I worry about
school, my family, my 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!" or "But you look so healthy!" I am merely
coping. I am sounding happy and trying to look normal. If you want to comment on
that, you're welcome. being able to stand up for ten minutes doesn't necessarily
mean that I can stand up for twenty minutes, or an hour. 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 everyday. It can be like a yo-yo. I never know from day to day, how I am
going to feel when I wake up. In most cases, I never know from minute to minute. That
is one of the hardest and most frustrating components ……. "sitting", "walking",
"thinking", concentrating", "being sociable" and so on, it applies to everything.
…."getting out and doing things" does not make me feel better, and can often make
me seriously worse. You don't know what I go through or how I suffer in my own
private time. Telling me that I need to exercise, or do some things to "get my mind off
of it", may frustrate me to tears, and is not correct. If I was capable of doing some
things any or all of the time, don't you know that I would? Another statement that
hurts is, "You just need to push yourself more, try harder". Also, chronic pain may
cause secondary depression (wouldn't you get depressed and down if you were hurting
constantly for months or years?), but it is not created by depression.
If you want to suggest a cure to me, please 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 likely, if you've heard of
it or tried it, so have I. In some cases, I have been made sicker, not better. This can
involve side effects or allergic reactions …. it also includes failure, which in and of
itself can make me feel even lower. If there were something that cured, or even helped
people with …. then we'd know about it. There is worldwide networking (both on and
off the Internet) between people.... It's definitely not for lack of trying.
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 to help me with the shopping, the cooking
or the cleaning. I may need you to take me to the doctor…. You are my link to the
"normalcy" of life. You can help me to keep in touch with the parts of life that I miss
and fully intend to undertake again, just as soon as I am able. I know that I asked a
lot from you, and I do thank you for listening. It really does mean a lot.
Reprinted from USResolve.org - Adapted from a work by Bek Oberin.
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