Tuesday, July 11, 2006

Living With Fibromyalgia

Living With Fibromyalgia Or Any Other Chronic Pain Syndrome

I was 27 when the doc told me that Fibromyalgia was the name for the galloping pains I had developed throughout my body. It was strange to me that sometimes it would hurt to hold a pen, or to walk, or do any of the normal activities of life. The doc told me I could go on disability because of it. This is back in the days when a diagnosis was pretty certain, and not given lightly. Back when it was nearly impossible to get that diagnosis due to the lack of information, lack of understanding, etc. Some skeptical medical people today will look at the time of my diagnosis as a sign of an accurate assessment. At any rate, when the doc told me I could probably go on SSI, something in me rebelled. Part of it is the Viking in me, and part of it was just fear that I would climb into bed and never get out.

If other FM people read this they are likely to be offended, but I really believe that my determination not to be crippled is what has kept me from being crippled. Most of the time I ignore it. Sometimes I am trying to figure out why something aches and I will suddenly remember...oh, yeah. It's not exactly whistling in the dark, but something like it.

My experience has been this...FM is like a flower in the garden. Given enough attention it will likely grow tall and take over, but if I ignore it, it will likely survive, but will stay insignificant, except for those periods of monsoon rains, or if I leave the sprinkler on too long and allow it to get a full long drink. I don't know if that makes sense to anyone else, but for me, paying it attention allows it to be a much bigger part of my life than I want. It's bad enough when it forces me to take notice, but like other chronic conditions, do what the doctor says, but don't focus on it. Ignore it as best you can and keep going.

I refuse to let FM take things like rappelling or whitewater rafting away from me. Sure I might be crippled for a few days afterward, but I will have done it!

The unwilling concessions I have made to this condition are these: 1. Refrain from using power tools. The vibrations make my wrists ache so bad I want to cut off my hands. 2. Don't do too much housework at once. Suffering for housework is silly, don't you think? 3. When something big is coming up, take it easy for a while before you go. 4. Don't go building houses. I would love to go on the mission trip, building or renovating for underpriviledged people and churches, but for me to go, much as I want to, means that I'm taking the place of a fully able-bodied individual. Some of these people can do physical labor for 10-14 hours a day. If I push it, I've got a good 2 or 3 hours of physical labor. 5. Don't buy a farm unless you can afford help to run it. 6. There's no shame in asking for help, though sometimes I feel like there is. 7. Your chiropractor and massage therapist are not optional. 8. Ibuprofen, while not for everyday use, is a wonder, and comes in industrial size bottles at Sam's Club and Costco.

What would you do if you knew there would be pain afterward? I'd be willing to bet that most of us would do plenty. Would you give up all the fun and challenging things in life to be pain-free? No way! Pain is a good thing. It is our bodies way of warning us, and lack of pain is a serious and dangerous condition that you don't want! Can you say leprosy? Being unable to feel pain is a terrible thing.

Anyway, them's some of my thoughts on the subject. And remember...you only have to use the parts of your body you want to continue to function, okay?

2 comments:

Beth said...

You have all my admiration. You keep going when many people would have quit. I know other ordinary day to day heroes like you - my mother and other friends.

Several of you are just amazing!

Kim said...

That's a compliment I'm not sure I deserve. It is not heroic to get on with the business of living. You know me well enough to know that one of my most frequently uttered sayings is "That'd be fun!" Because I believe that life, in all it's serious business and hardship and trials can still be fun, I seek that part out. It is fun to be around friends and enjoy their company. If that means we walk a little further than is comfortable to me--so what? If I develop a small limp, I try not to mention it and move on. This is a small thing to overcome, and since I had no choice in whether to have or not to have this, it is just life. Heroics, to me, involves choices to go above and beyond for the benefit of others. I would like to be heroic, but so far, I don't think I've had the opportunity. But thanks for the compliment.