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.