Please read it may help u with people that don't understan
Lenzi - Jan 19th, 2009 9:47 PM
[ Original Post ]

An Open Letter to All Who Do Not Have FMS

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 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 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 work 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'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 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 up for ten minutes, doesn't necessarily mean that I can stand up 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 a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting the act of standing with "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 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 doing things" does not make me feel better, and can often make me seriously worse. Telling me that 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 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 exercise 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 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!?) 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 do 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.

If you want to suggest a cure to me, 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 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 doctor. 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 help me with the shopping, cooking or cleaning. I may need you to take me the the doctor, or to the physical therapist. 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 might not get to see you. ... and, as much as it's possible, I need you to understand me.

Comment


 

mystyk71 - Jan 26th, 2009 11:58 PM

Thank you so much. You summed it up perfectly.


writerchick - Jan 28th, 2009 4:04 PM

Reading this made me cry ... again. I could not agree more and thank you for so clearly stating what so many of us feel. I struggle every day with the little things that are taken for granted- taking a shower and getting dressed without sitting down to rest, basic house cleaning, the list goes on. What keeps me going is the successes that happen every day. It might be that I was able to get out of bed and brush my teeth, and that's all. But it's something. Comparing life with FMS to life without it is useless, discouraging, and counter-productive. Instead I now choose to focus on the things I can do each (individual) day and not concentrate on what I couldn't do.

I have also moved away from destructive relationships, people that don't understand that you are doing the best you can don't need to be allowed access to bring you down. I fight the depression constantly, sometimes it's so hard to remember that you cannot compare yourself to your peers or even your pre-FMS self. I guess what I'm trying to say is that the fight IS the win.




irish - Feb 6th, 2009 5:55 AM

hi,im new.my frighting pains started after i broke my back for the second time while 31 weeks pregnent on my twin daughters,at first i put the back pain down to the new fracture.but more and more things poped up i found my wrists more so my left felt week to the point i couldnt mash a amall pot of spuds,my wrists felt so weak heavy that i taught they would snap.they would flare up at night the sweeling preasure was unbarable.as i have said the back pain i put down to the break but that pain was becoming frighting i have alwaya been used to back pain ever since i broke it the first time when i was a little girl put these pains were not what i was used to the heavy burning pains i would feel after just standing at the sink i started going to my doctor who delt with me as a child.she told me go back to work get out more join a gym ,go easy on the pain meds,my legs started to take a bad turn the sharp pains i alwaya got doubled my bons felt like they were black and blue.kneeling down i would get sharp pains up my knees like i was after knealing on something getting back up my feet were so weak i taught i would fall over.all in all i kept going back to my doc and she woud say the same things.she finealy agreeged to send me for a dexca scan which came back that i did have a form of brittle bone.i taught that was it least i no y i have this pain but no i was told the pain was in my head!that oistopino dose not cause pain.i became very low felt so alone ,my pains got worse i couldnt sleep i felt so tired i wanted to cry but couldnt.i went to see another doctor he sent me to a reumatoligest who after ruiling out artritis dignosed me wiht fibromyalgia that was for months ago,i taught not knowing was the worst that if i just new i could over come it deal with but i see now it wasnt .every day its the same same pains feeliongs same looks from family and i feel so lost so aloneif it wasnt for my girls i dont think i would go on now this new pain has start past ttree months before every period i am in un bareable pain going right up through me and its realy starting to scare me