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?

Sunday, July 09, 2006

Water, Water Everywhere And Then I'm In The Drink.

It was an incredibly warm June. Warm and dry. Our typical afternoon showers abandoned us here in Colorado and headed elsewhere. I returned to Colorado from an atypically hot dry Oregon, to rain showers. Fortunately the rain did not interfere with our landing, the lightening being a safe distance away.

It has rained every day since, and not our typical light afternoon shower. It has rained and rained and rained. July 4th we needed sweatshirts after a really strong rain cooled temps before sunset. It rained or sprinkled during our entire rafting trip. I was really glad we decided to splurge and rent wetsuits and splash jackets. It would have been miserable without them. One great thing about the rain is that it kept the bugs away. We could see them in the air, in the midst of pouring rain, tempting swallows to dart across the river for a wet feast, but the biting insects seemed to be missing.

The other plus is that sunscreen was unnecessary. The clouds were thick enough to keep us tan free.

I'll admit that I was concerned that I might not be able to pull my paddle enough to be a help and not a liability, but I did okay. At one point, hitting a rapid just right, and with the right surge of water, and all, I found my face in the river. I knew I was being thrown from the boat. One hand kept a grip on my paddle, while with the other I grabbed for the line on the side of the boat. If I was going in, at least I wasn't going to get away from the boat. I remember being surprised that the water wasn't colder. The rain felt colder than the river. Almost before I had a chance to process those thoughts, I was upright in the boat. The guide had grabbed my life jacket, and Steve had my foot. They kept me from going over completely. I'm not sure how much of me made it in the water, but my hair and hat were completely drenched, so my sense is that my whole head was under.

It was fun, but the jolt either of being thrown or being stopped so abruptly have given me some pretty strong aches and pains. About 6 or 7 on a 10 point scale. Not enough to scream, but enough to wince, moan, even cry a bit, and enough to send me to the Ibuprofen bottle, taking more than most could handle, or would need. A typical 400 miligrams does nothing for other than a mild headache with me, but 800 mg last night still didn't cut it. Today it was 1200 mg before I could move with ease. Oh the joys of FM. Before you ask, yes. It was worth it. Yes. I would do it again. I'm not sure I want to take a full-day trip, or to go on the stronger rapids. Your attachment to the raft is so minimal that it's a wonder we don't all wind up in the drink. To me anyway.

It's great fun though. It amazed me how concerned I was to pull my paddle properly for the benefit of everyone else. I was really impressed with our guide. Being right in front of her, I was able to see and feel how much work she put into the trip. She is the rudder, and knows the best paths down the river. While it might have felt like we were doing all the work, I could feel her straining to rudder the boat into the right path, the right current.

Just as a side note: Once your wet suit is wet, don't go to the bathroom until you have no other choice, because that suit is not coming back up without calling in the marines. For that reason, make sure you wear shorts over your swimsuit if you don't want to be exposed for the remainder of the trip. I'm glad was wearing those tangerine shorts under the wetsuit, that's all I'm saying.