The Gift of Fibromyalgia

November 15, 2007

Without Fibromyalgia:

  • I never would have quit my job.
  • I never would have slowed down.
  • I never would listened to what my body was telling me.
  • I never would have learned to nurture myself.
  • I never would have started my blogs a few months ago.

Fibromyalgia forces change. It screams for attention. It refuses to compromise. It sends a message that says, “What you’re doing isn’t working. Do something different. Do something else–now.”

A few months ago, I was on leave from a job so stressful that my body refused to be a party to it any more. Walking down a flight of stairs became a major challenge. The fogginess was making it impossible to perform the simplest tasks. I was running (well, crawling) to doctors, trying to find a cure that doesn’t exist. In the meantime, I was jumping through hoops trying to make all of this easier on everyone– my employers, co-workers, the insurance companies, my boyfriend, friends, and family. It depressed me and wore me down.

“Find what you love to do,” urged my boyfriend, Tom. “Let yourself flourish. Then the Fibromyalgia will disappear.”

At first, I didn’t even understand what he was talking about, but it slowly began to sink in. Finally, I slammed on the brakes. No more, I decided. I have to learn to do this my body’s way. My spirit’s way. What I believed was most important– a decent wage at any cost, benefits, endlessly trying to please as many people as possible in any given situation–was wrong.

So now, after nearly eight years of spiraling with this syndrome, I’m doing what I love. I live in a little house with a kind man and a passive-aggressive cat. I listen to music, I paint, and I write. I look at the sky, notice the changing leaves on the trees and I feel grateful. I do chores when my body gives me the green light, and I try to stop when the light turns yellow.

A few months ago, I started two blogs– one for my “real” life, and one where I could rant and wail and cry about Fibromyalgia (this one). Immediately, blogging just felt right. At first, my goal was just some self-therapy, and to discipline myself to write every day. Never did I foresee what a gift it would turn out to be.

Through this process, I’ve met so many wonderful bloggers, and blog readers. They’ve given me much food for thought. We exchange advice, ideas, and encouragement. We laugh and cry together, and provide hope and strength. It was through blogging that I met Brian, Little Miss, Beth Z, Tammy, RM, and Wendy, among many others– writers, editors, and friends who encouraged me to start submitting some of my essays. This led me to try my hand at writing for a living. It feels very right, like I’m finally doing something that’s harmonious with who I am.

This week, one of my articles is on the front page of our city’s arts and culture magazine. Tom’s so proud that he nabbed several copies and brought them home. I don’t feel proud, I feel thankful. I’m finally learning to earn my living doing something that I love. In a roundabout way, thanks to Fibromyalgia, I think I may be flourishing.

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I am so sick. This is crazy. It feels like I’ve been bitten by a Tsetse fly or something. I’m sleeping all the time, my brain’s not working, and I’m so weak that I feel like an inflatable raft that’s had all of the air sucked out of it– I’m just a limp, useless thing right now, a noodle on a sofa. Frustrating.

I’d made a decision not to take the Lyrica anymore, because I no longer have insurance, and I just can’t afford it. But I was so achy earlier that I took one, and it’s helping a bit. Tom put a Lidoderm patch between my shoulders, and it’s masking some of the pain, which is great. I’ll take fake relief right now, thank you very much.

It just occurred to me that my Fibromyalgia flares up the worst in November. In the past, I’ve been in the hospital and on leave of absences twice, at exactly this time of year. I’m rolling with it this time, but I dread thinking that this is the same thing, or that it’s going to effect me in the same way this year.

This is like the flu times ten, without the fever. I just had to whine a little.

Human Doppler Radar

November 3, 2007

My body’s been aching like crazy, partly because of the tumble down the stairs last weekend, but mostly at this point, because of the weather. As winter approaches, I’m dreading what experience has told me is yet to come. My legs, hips, knees and back are burning, and there’s an intense, bone-deep achiness that’s hard to explain. The only adjectives that come to mind to describe it are “gross” and “disgusting.” I know that sounds weird, but it truly does feel so awful that it makes me want to crawl out of my skin.

Sounds crazy, huh? But this is what Fibromyalgia is like for me. I wake up in the middle of the night in immense pain, then I get a little freaked out because I know that lack of sleep makes it all worse. I’ve said it before, but it does sometimes feel like a cruel joke– a game that can’t be won, because the rules are so impossible to follow. “Don’t get stressed,” “Get plenty of rest.” “Exercise.” “Take it easy on yourself.” So I try to do all of this while I hurt and burn and become a dejected insomniac. I know that it will all get worse as the temperature drops. I can take all of the advice in the world about this syndrome, but until I’ve mastered the art of controlling the weather, I’m sort of up a creek. Or a glacier.

The pain got really bad yesterday. “The temperature must be dropping,” I told Tom, like an old lady with rheumatism and a trick knee. I went to let the cat in, and was hit by a blast of cold air, which confirmed my suspicions. I can tell when it’s going to rain now, and when it’s going to snow. I’ve come to dread seeing a gray sky more than I ever did, because now, it all means something different than simply, “Bundle up,” or “Carry an Umbrella.”

Today, it’s warmer. The sky is blue and beautiful, and I’m hopeful again. I’m going to try to catch up on my sleep a little, and attempt to regain some of my energy. And so it goes.