There is simply no way for anyone to understand what is going on internally with the Fibromyalgic body. Because you look absolutely normal, yet you feel like you will never perform normally again. No one can see what the problem is. And since it is not such a known illness such as cancer it does not get the respect that people with cancer would get. No one would question a cancer patient about his or her illness because everyone has heard of it. If you have bad days because of your illness with cancer no one would question it. But because Fibromyalgia has not been classified as a disease or given notoriety (such as a famous person getting FMS) it is relatively unknown.
Several years ago Fibromyalgia was a disability categorized as "psychological". It's hard to understand how it feels to be told you are mentally having a problem when your body will not perform what you are asking it to do. How can that possibly be mental? Patients were, in effect, being told it was "all in your head". Fortunately, the medical field has produced enough research to re-classify it as a true physical disability that is often paired with studies and treatments for arthritis and rheumatism.
People with FMS have the additional stress and frustration in their lives of trying to explain (all the time) why today they can do almost anything and the next day they can barely get out of bed. Depression is a frequent side-effect of FMS and who can question it? Living with a body-wide toothache-like pain constantly is something only fellow sufferers can truly understand. When we have "bad days" the pain can feel like there are hot curling irons jammed into our muscles. Can you even imagine that? Also imagine the fatigue of your muscles being so bad that it feels like they have turned to Jell-O. And no matter how much you try to exercise your muscles never feel normal again. It's always like battling Jell-O to make your body perform.
Here's a letter I like to use to inform people about my condition. I have Fibromyalgia and completely understand what you are going through. Copy the letter below and give it to your boss. This might make her wake up and realize that your situation is different.
Letter to people that don't have Fibromyalgia (FMS) and/or MPS:
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 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, "sitting", "walking",
"thinking", "being sociable" and so on ... it applies to everything. That's what FMS/MPS does to you.
- Please understand that FMS/MPS 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 loose (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/MPS 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/MPS 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/MPS 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 were something that cured, or even helped, all people with FMS/MPS 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/MPS, and 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 to 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.
2007-07-02 03:15:49
·
answer #1
·
answered by Cherokee Billie 7
·
0⤊
0⤋
I know what I would have said to her
"oh did you have a fall too, or I was not aware you had Fibromyalgia".
She trivialised your pain, because she lacks the understanding or knowledge of what Fibromyalgia is, or she is just a cow.
So give her information on what Fibromyalgia is, and how it impacts on your well being.
I would also ask her what she is planning to do, to prevent further injuries to staff. As there is an expectation (law in some countries) that employers prevent, preventable accidents via policies and procedures, including how to manage spills within the work place.
Good luck and hope the pain from the pain settles sooner rather than later.
2007-07-01 19:35:21
·
answer #2
·
answered by Georgie 7
·
1⤊
0⤋