Having FMS means everything has changed and a lot of these changes are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about FMS and its effects, and of those that think they know, many are actually mis-informed.
In the spirit of informing those who mean the most to me, these are the things I would like for you to understand about me.
Please understand that being sick doesn’t mean that I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and even 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 my family, friends and work. And most of the time I’d like to hear you talk about what’s going on with you and your families.
Please understand the differences 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 not being miserable. So if you’re talking to me and I sound happy, It means I am happy. That’s all. It doesn’t mean that I am not in a lot of pain, or extremely tired, or that I’m getting better. I want you to understand that being able to (stand, sit, walk, be sociable, or think) for ten minutes, doesn’t necessarily mean that I can (stand, sit, walk, be sociable, or think) 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 FMS it gets confusing. I want you to 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 difficulty making it to the kitchen. Please don’t say “well you did it before”. If you want me to do something, then ask if I can? In a similar situation, I may have to cancel an invitation from you at the last minute. Please understand that “getting out and doing things” does not make me feel better, and can only make me seriously worse. Telling me that I need to exercise, join a gym, loose or gain some weight, or try classes..may frustrate me to tears and is not correct. Don’t you think that if I was capable of doing these things I would do them.. After all, if you know me at all, you know that I have always been the opposite of the way I am now. I am working with my doctor and physical therapist and already doing the exercises and diet that I am suppose to do. Another statement that hurts is “you need to push yourself more, exercise harder…” Having FMS also means that I have extra numbers of nerve endings in my body. This is why I feel pain so much more than the normal person. Some days certain smells make me so ill and give me the worst headaches. Then the next day I could smell the same candle or perfume and not have a reaction at all. FMS deals directly with muscles and because my muscles don’t repair they ways yours do, this does far worse damage than good and could result in a recovery time of days, weeks or months from one single activity. Also, FMS may cause secondary depression (wouldn’t you get depressed if you hurt and were exhausted for months and years on end!?) FMS is not created by depression. Depression is a result of FMS. FMS does not forgive. If I have to sit down, take medication, It means I have to do it now! Please don’t try and suggest a cure or treatment. Believe me if it’s out there I have tried to read it by now. FMS affects over 6 million women and men (yes men)
If after reading this you would like to read more or give me articles/books to read I am very open for suggestions. After all, I can’t possibly read everything out there. I depend on you, the friends and family who are not sick –I need you to visit me - call me – ask me out for lunch –Sometimes I may need you to shop for me, clean, take me to the doctor. You are my connection the outside world and as much as possible I need you to understand me. No matter what role you play in my life.
I love you all very much.
No comments:
Post a Comment