From diagnosis to learning to live with Fibromyalgia

I recently joined my local Fibromyalgia support group. I probably will not be able to join their meetings very often. I now have links to others who are living with this condition everyday as I am.

In among st the welcome letter I received ,was a letter addressed to “Normals”.

I have tried to discover the original author and despite my best efforts, have been unable to do so. Please if anyone knows of the original author of this letter I am about to share with you, please let me know, so I can give them full credit for it. I have not edited this letter but rather dictated it as it is presented to me.

A Letter To Normals

Having FMS means many things change, and a lot of them 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 misinformed.

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 amounts of 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, work and my family and friends. Most of the time I’d still like to hear you talk about your’s too.

Please understand the difference between “happy” and “heathy”. When you have the flu you probably feel miserable with it, but I have been sick for years. I cannot 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 does not mean that I’m not in a lot of pain or extremely tired, or that I’m getting better or any of these things. Please don’t say, “Oh you are 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 for 10 minutes does not necessarily mean that I can stand up for 20 minutes or an hour. Just because I managed to stand for 30 minutes yesterday doesn’t mean that I can do the same today. With a lot of disease you’re either paralysed or you can move. With this one it is confusing.

Please repeat the above paragraph substituting “sitting”, “walking”, “thinking”, “being sociable” and so on – it applies to everything. That is what FMS does to you.

Please understand  that FMS is variable.  It’s quite possible ( for me, it’s common) but one day I’m able to walk to the park and back, when the next day I will 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 and 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 do 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 lose or gain weight,   get this exercise machine.  Join this gym.  Try these classes……may frustrate me to tears and it is not correct.  If I was capable of doing things don’t you know that I would? I am working with my Dr and my physical therapist and am already doing the exercise and diet that I am supposed to do.  Another statement that this is” .  You just need to push yourself more, exercise harder”.  Obviously , FMS  deals directly with the muscles and because our muscles don’t prepare themselves the way your muscles do. This can cause more damage than good ,could result and in recovery time in days or weeks or months from a single activity.  Also, FMS may cause secondary depression ( Wouldn’t you get depressed).  If you were hurting and exhausted for years on end?   It is not created by depression.

Please understand that if I say I have to down/lie down or take these pills now but I do have to do it right now, it cannot be put off or forgotten.  Just because I’m out for the day (or whatever) FMS does not forgive.

If you want to suggest a cure for 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 because I have had almost every single one of my friends suggest.  At one point or another.  At first I tried them all, but then I realised I was using up so much energy trying things that I was making myself sick, not better.  If there was something that cured, or even helped all people with FMS 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.  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 Dr.

In many ways I depend on you people who are not sick.  I need you to visit me when I’m too sick to go out.  Sometimes I need you to help me with shopping, cooking or cleaning.

I mainly due to take me to the doctor or the physiotherapist.  I need you on different levels your mining to the outside world.  If you don’t come to visit me then I may not get to you.  And as much as it is possible I need you to understand me.

I have given this letter to many of my family and it helps them understand.

I sincerely hope by sharing this, you the reader can share it and understand too!

Many thanks for reading.


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