Sunday, February 29, 2004

My Fibromyalgia Life Story... 

The folks over at Fibrohugs (check out their site listed under "Links") are putting together a new book filled with the real-life experiences of people who have fibromyalgia, their doctors, friends and family. I naturally submitted a contribution. Here is what I sent:

Fibromyalgia Is My Teacher

I have had fibromyalgia since 1997. Its onset was fairly dramatic; I had what I believe was an allergic reaction to a medication, and instantly I went from being a healthy woman to one who would never know another day without pain or exhaustion. My mental clarity was forever banished, and the words that once flowed effortlessly from me now often languish without expression. I did not seek change; change was thrust upon me.

Once I was finally diagnosed three years later, I thought my suffering was over. I relaxed when I found out I did not have a fatal disease or even a disfiguring one. The printed material the rheumatologist handed to me was fairly glib and indicated that this syndrome was simply a product of stress and could be overcome by a positive attitude and exercise. In other words, mind over matter. Naturally, I put this approach to work immediately; I ignored my body's distress signals and forced myself to exercise no matter the agony it caused. I smiled and told my friends and family that my condition was under control and was a mere inconvenience in my life. For a year and a half, I made some progress: not the progress I and my doctors were expecting, but progress nevertheless. I was able to complete easy hikes in the mountains of up to four miles total, play an occasional game of volleyball, spend a day with friends. The symptoms were all still there, of course, but I rarely admitted to them and committed most of my energy to tuning them out.

Then the bottom dropped out. Unbeknownst to me, I was taxing my body beyond its capabilities, and it responded by succumbing to antibiotic-resistant bronchitis. Suddenly the pain and fatigue refused to stay in the background, and no amount of cheerfulness or activity could contain it. My doctors blamed my regression on laziness and depression, asking me whether my marriage was unhappy or whether I had a job that bummed me out. No one wanted to admit that the illness required anything more than an attitude adjustment. Thus began a two and a half year odyssey that eventually led to the discovery of the factors that were perpetuating my fibromyalgia: celiac disease, chronic myofascial pain, Sjogren's syndrome and hypothyroidism. None of these illnesses are cured by being cheerful, and as it turns out, neither is fibromyalgia. I still try to maintain a positive attitude because it is a very powerful coping skill, but it is only part of my overall treatment plan.

So I have had seven years to adjust to the reality of fibromyalgia and chronic illness. What has this ordeal taught me? This would be a sad tale indeed if I had learned nothing. Some of the changes have been to my lifestyle, others to my personality. Here are the ones foremost in my mind:

1. I have learned patience. When one is experiencing agony that would send most people screaming into the ER only to be told that the first available appointment for a pain management specialist is three months away, patience becomes a necessity.

2. I have learned to accept help from others and to do so graciously. I used to think I was morally weak if I did not fend for myself at all times. Admitting that I needed assistance with simple tasks such as opening packages, carrying bags or opening doors was a bitter pill to swallow indeed. But once I realized that that sometimes others feel good when you let them help, I learned to smile and say thank you and mean it.

3. I learned to ask for help. Ok, so I'm still working on this one. I have figured out, though, that there are certain activities that will do me more harm than good, so I get the help of someone else better able to do it rather than risk injury.

4. I have learned to worry less and focus only on what's worthy of concern. It takes most of my energy to get ready for work, prepare my meals and do my relatively simple job. I have none left over to wonder whether my boss has a hidden agenda, to fuss about the latest style, to fret about what others think of me.

5. I have learned to work on being healthy on the inside rather than trying to look good on the outside. Many times, makeup, pantyhose, fancy but uncomfortable shoes and tight clothing are not worth the extra effort that I can ill afford to spare. Instead, I concentrate on approaching the world rested, fit, smiling, functional and comfortable.

6. I have learned to appreciate the blessings in my life. Many people who are chronically ill do not have the awesome support that I do or the understanding of friends. I would not be able to function without a good job situation, a cooperative insurance company, trustworthy doctors, a husband who spoils me, a church who accepts me as I am and friends who listen to my endless rants.

7. I have learned to prioritize. When pain and fatigue dominate one's life, one must decide which pursuits are worthwhile and which must be shelved or delayed. Taxing my body trying to get all my errands done on the same day usually results in an exacerbation of symptoms, which will in turn preclude me from doing anything at all the next day, so I don't really gain by it. There are times that I decide something is important to my mental well-being, and I may sacrifice a bit more of my physical well-being than usual, but these times have become few and far between.

8. I have learned to quit putting all fun things in my life on hold for that magical time "when I am better". Guess what? That better day may never arrive, and indeed, I may only get worse to the point that I have squandered a valuable opportunity. So I make commitments from time to time as long as I am reasonably sure they won't unduly jeopardize my health. I am stubborn enough to keep my promises yet careful enough to not overbook. I plan to go to a comedy club next month, a baseball game this summer, and a vacation next fall. Mental health is just as important as physical.

9. I have learned to stop thinking of fibromyalgia as my creator's punishment for some wrongdoing on my part. I didn't commit a sin, I simply got sick. I no longer pray for relief from punishment; instead, I pray for the ability to cope with what I am given.

10. I have learned that it is possible to still be useful even when I can't leave the house. I can, via the computer, teach others about chronic illness, console someone recently diagnosed, commiserate with someone about the daily aggravations of fibromyalgia and occasionally even cheer someone up.

11. I have learned empathy. This did not come easily to me, and I still struggle with it. But there are occasions when I recognize in someone the pain they are trying to cover up, the weariness that overwhelms them, the struggle to gain control over one's own body. I am slowly learning to listen better and am more aware how much I can learn from others.

My journey is still fairly new. I have much more to learn from it.

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