Letter to people that don't have FMS/MPS/TN and more....

"Live my life in my shoes before you judge me."

Having Fibromyalgia, Myofasical Pain, Trigeminal Neuralgia Pain, Atypical Facial Neuralgia Pain, Charcot Marie Tooth Disease Pain means many things change, and a lot of them are invisible. Unlike cancer or being hurt for a moment or a hour, most people do not understand even a little about what all I have and it's effects, and of those that think they know, many are actually misinformed. 

In the spirit of informing those who wish to understand why I am not able to do certain tasks, housework, outside yard work and much much more.....

These are the things that I would like you to understand about 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 constant pain and exhaustion, if you visit I probably don't seem like great company or fun to be with, but I'm still me stuck inside this body. I still worry about things in life, kids, my service dog Rusty, my loyal cat friends and my family and 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 am not in a lot of pain, or extremely tired, or that I am getting better, or any of those things. Please, don't say, "Oh, you're 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 standing up sitting up, walking, thinking, being sociable and so on for two to five minutes, doesn't necessarily mean that I can for ten minutes, or an hour. And, just because I managed to stand up from time to time or thirty minutes yesterday doesn't mean that I can do the same today or the next day.  It's quite likely that doing all that yesterday or today, has exhausted my resources and I'll need to recover If I fall asleep while sitting up then it is time for me to lay down and rest -With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing. Please, don't say "But you were fine yesterday or a little bit ago." or "Why can't you do this, why why why.

Fibromyalgia, Myofasical Pain, Trigeminal Neuralgia Pain, Atypical Facial Neuralgia Pain, Charcot Marie Tooth Disease Pain, Please understand that are 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  out of bed, to the bathroom or 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, ask if I can and I'll tell you if I am able or not and please don't keep asking me why not. In a similar vein, I may need to cancel an invitation or have to go lay down on the bed at the last minute, if this happens please don't 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 that i need the exercise, that I need some fresh air, or that I just need to loose (or gain) weight, you need to walk more and get out of the house, join this gym, do more housework, try these classes....may frustrate me to tears, and is not apprieciated and not correct...if I was capable of doing these things, if I could do it I would. I am working with my medical doctor and my specialists and I am already doing the exercise and diet that I am suppose to do and your non medical expertise advice is not needed and not apprieciated. Another statement that hurts is, "You just need to push yourself more, exercise harder, walk more,...." 

Please understand that if I say I have to sit down/lie down/take a nap/take these pills now, apply heat or cold now, that I do have to do it right now - it can't be put off or forgotten just because I'm doing something or I'm out for the day(or whatever). Fibromyalgia, Myofasical Pain, Trigeminal Neuralgia Pain, Atypical Facial Neuralgia Pain, Charcot Marie Tooth Disease Pain (MD), does not forgive.

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 because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with everything that I have then I'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Fibromyalgia, Myofasical Pain, Trigeminal Neuralgia Pain, Atypical Facial Neuralgia Pain, Charcot Marie Tooth Disease Pain. If something worked we would KNOW and our Professional Medical teams would tell us because the last thing they would want, is us to keep being in extreme pain like right now. 

If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don't expect me to rush out and try it. If I haven't had it suggested before, I'll take what you said and discuss it with my doctor.

 In many ways I depend on you - people who are not sick - I need you to visit me when I am to 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 to one of my specialists. I need you on a different level too...you're my link to the outside world...if you don't come to visit me then I may not get to see you. But most importantly, I need a friend that cares about me and loves me for who I am inside. And as much as it's possible, I need you to understand me.

(this was copy and pasted and not all typed out by myself. - I am not able to type long periods of time.)