Monday, July 20, 2009

And this is my body on fibromyalgia--

i think i've found a way to help my 21 year old son understand fibromyalgia.

It was all because of a conversation. One of the million or so we've had on the subject since i was diagnosed about 4 years ago. i understand it doesn't "show." All limbs are apparently still connected. i don't walk with a limp. But we've been going through this for some time now. FOUR YEARS. Roughly.

He was trying to explain to me how there were things i could do. What exactly? i questioned politely. Well, he said, if you just push harder at things then you get better and better at them. (i believe exercise was the subject matter--the skinny little high metabolism can eat anything and everything and never gain an ounce punk of a guy.)

This is where you are wrong, i say calmly (for how i felt, at least.) Think of it this way, i say.

The reason having fibromyalgia is as painful as it is comes from the actions of the central nervous system. You see, IT thinks i am in much more pain than i should be for the amount of effort my body has made. The nerves are over-sensitive. NOW: picture a girl. An angry, emotional girl. Because she over-reacts to things with sobs or anger, you do this one little thing, she over-reacts, and before you can blink she is screaming in your face. This is what my nerves do on fibromyalgia--i do one little thing, they over-react. A little of what seems normal movement causes screaming in my muscles and such. The next time i say "i hurt" i want you to remember that hysterical girl screaming in your face. THAT is my body on fibromyalgia.

Does he "get" it yet? i can't know for sure, or if he ever truly will.

And this doesn't even touch the brain or emotional issues involved.

But you can just bet i will tell both him and you about those as soon as i can think of a good way to explain. Trust me.

1 comment:

Connie said...

Good post, Julia. I think that's good way to start. I'm so glad the lines of communication are open with both of you.
Did you mention that to your MD ? I'd love to hear what the answer would be.
I was told was a sensitive person, and I am, so I think that has to be there for the groundwork. Sensitive can also be a positive if it is channeled into the right area. What used to work for me was tons of exercise, climbing trees, basketball, etc. I think it helps creativity as your brain gets flooded with ideas others never seem to have. If you take a big guy who nothing bothers, I wonder if he would have the same symptoms ? And why mostly women ? I never had a twinge when I was pregnant for 9 months and 4 hours later IT all returned. Hormones ? Most people grumble after a while, and I could have had 10 children (if I could have fed them)!
I am only sure of one thing -- it is like walking around with cement block on your legs and arms and the fatigue is unreal. No, we are not faking.. why would we. I could be out going back to school, taking cruises, vacations, etc. but I don't have the option. Staying home with your "thoughts" only exaggerates the pain. Sometimes it seems so simple to me, and other times
I get frustrated because of disbelief. I guess we take it a day at a time and turn off those nasty comments as best we can. Multiple allergies, you bet. If it was a cancer, there would be some attention to it, but I feel like others think we are --lazy, crazy but not dumb. I was so normal up to age 28, and my life changed forever. I'm sure your story is similar.
Keep me posted, my friend.