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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'm not sounding better, I am sounding happy. If you want to comment on that, you're welcome. Please understand that being able to stand for 10 minutes doesn't necessairly mean that I can stand up for twenty minutes, or an hour. And, just because I manage 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 paralysed, 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 does to you.
Please understand that FMS 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 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 I need a treadmill, or that I just need to loose (or gain) weight, get this excercise 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 excercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder...."Obviously FMS 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 weeks or months from a single activity. Also, FMS may cause secondary depression (wouldn't you get depressed in 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 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 does not forgive.
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, cooking or cleaning. I may need you to take me to the doctor, or the physical therapist. I need you on different levels...you're my link to the outside world...if you don't come to visit me then I might not get to you.
...and as much as it's possible, I need you to understand me.
Fibro.