Posted by Heidi/Mermie When I was finally diagnosed with fibromyalgia syndrome (FMS), I was amazed that there was actually a name to cover all those weird and widespread body happenings that I was experiencing. I remember being truly blown away when I learned that other people had it too. I thought, "Wow, I am not crazy, I am not the only one". I am not the hypochondriac, sicko, put-on that some people thought me to be. I am not what various physicians, friends, family members, co-workers and, even I, sometimes thought or said. If you have fibromyalgia, by now you know that along with your diagnosis comes change. Because you have something that other people cannot see, you automatically become a full-fledged member of the "Invisible Chronic Illness Club". This is a club whose members do not want to belong. Initiation rites include pain (lots of pain), doubt, disbelief, shock, and even denial (NOT ME!). But at least you now have a name to attach to all the odd things your body has decided to do without your permission. You have fibromyalgia, a really big word, a mouthful as well it needs to be for all it entails. Now that I knew the name of what I had, I decided I needed to educate myself about it. When people said, "What is that?" (FMS), I knew I should be able to say more than "a pain". I needed to understand FMS for myself. So, I set about making it a priority. In those "Old Days" there wasn't much information readily available to us which meant investing a lot of time and effort in gathering knowledge. As I started, I learned new words such as Substance P, serotonin, allodynia, myofascial, as well as the "mere" fact that I had tender points. Later came strange new expressions like "Fibro-Fog", "Brain Fog" and even "Cerebral Flatulence", whatever that means! I also acquired new meanings to familiar words like pain, sleeplessness, energy level, and as time went by I even learned what NO really means. New words, new meanings to old words. This all seemed to point to another word: ADJUST. In case you didn't know, the word fibromyalgia really means adjust. I now must adjust my thinking, my lifestyle, and even my attitude. That's a lot of adjusting for one person to handle. That's when I realized uh oh, it wasn't just ME who had to adjust. There were also others, too, and that was the really hard part. I now reasonably understood that fibromyalgia accounted for my constant pain, my irritable bowel and bladder, my allergy problems, and also for my lack of endurance and non-sleep routine. I knew I had memory blanks, word mix-ups, and the basic "irritable everything." At this point I had a name for it, I had a personal, workable understanding of it, and I knew I had to make a lot of adjustments. Next I was faced with Mission Impossible, trying to get others to catch up with me. Lest you start out thinking, "I can do this", I am here to tell you, "Not so fast; this is not easy". The realization soon dawns that unless you have FMS, you cannot fully understand it, no matter how hard you try. So you settle for getting through just a little bit to anyone who is willing to listen, believe, or try to understand you. Some can accept and adjust; some cannot or will not. It has to be a very difficult thing for others to do. Look how hard it is for us when we really know how we feel and think. If you can find even one person who also has FMS, it can be a life ring in a stormy sea. Someone who says "Yes, I understand and know just what you are talking about" and you know they really do. I personally think the name of another FMS sufferer should be a prescription given with the diagnosis. As part of my "adjustment mode" I find humor a necessity. Believe it or not, there really is some still there, and some days I find it to be my salvation. I have a mental cartoon picture of myself in the morning as I lie in bed kicking the covers around and pulling and grabbing at them. That's enough to make anyone laugh. Actually, I manage to get some gentle exercise, and as a bonus when I get up the covers are pretty well straightened and the bed is a lot easier to make! I also have to really laugh at the cartoon image of me on a really bad FMS day when I need to sit on the toilet seat after showering and use my hair dryer to dry off my feet and legs. Funny for sure, but it works!
on 8/28/2007, 2:59 am
On Adjusting
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