Fibromyalgia Awareness

May is the month for fibromyalgia awareness. Many of us are aware of it all the rest of the time as well. It touches the lives of family, friends and co-workers. I share my experience in hopes of helping others who are affected in some way by fibromyalgia.

Imagine waking up in the morning after a short, restless sleep. Your body aches like the flu is coming on, yet there is no flu. You can't move your head without feeling stabbed in the neck, and your lower back aches when you roll over.

You get out of bed and take a pill for pain, have a little decaf, and wait to feel like a human being. In a couple of hours, you're already exhausted and need to rest. On top of that, you feel kind of useless and guilty for not accomplishing nearly as much as you feel you ought to, and this makes you feel sad. Welcome to a day in my life when fibromyalgia is in full bloom. It may vary from person to person, but one thing in common is pain.

I've always been tired, but figured it was from keeping house and chasing two little boys plus sometimes daycare kids around all day without a break. Eventually my fatigue was diagnosed and treated as depression. I couldn't keep up with the kids very well anymore, and was thankful that they were no longer needing me to do everything for them. I could take a nap once in awhile, or sit down while they played without having to jump up every couple minutes, as toddlers seem to require parents to do.

I think I was supermom, at least for awhile. But there were a couple of turning points that told me I was slipping. My youngest had lost a tooth and put it under the pillow for the tooth fairy. Both boys ALWAYS got a silver dollar for each tooth (we went broke when my oldest had to have 13 surgically removed all at once, as he had supernumerary teeth like a shark). But this time the tooth fairy messed up and didn't get up in the night. The next morning, the poor little guy checked under his pillow and my heart sank. I forgot. I failed.

A similar occurrence was when one son had an awards ceremony at school that I was to attend. I forgot, and he called me from his teacher's cell phone, almost crying. I threw on some clothes and rushed there in time to see him get his award.

I feel that I failed my sons in so many ways. When they were older and their dad and I were split up, it seems that so many of the times I tried to spend with them I was having pain... really horrendous pain in the belly. So I'd just sit with them and talk. I was so depressed and exhausted, I couldn't "parent" them the way I feel a parent should do. Anxiety.. guilt.. What was wrong with me? My sons were the most important thing in my life!

Fibromyalgia can cause depression and anxiety. I've been depressed on and off since I was a child, and had some strange pains in the ribcage. Those were diagnosed as "growing pains" when I was about ten years old. Sharp, stabbing, doubling over pains were for growing? I was an overachiever, a perfectionist... so maybe it was stress-induced. Through my teens and twenties, monthly cramps were incapacitating, causing dizziness and being unable to stand. The only relief was bed rest, massage and heat for about a day and a half. I got lectured at school over my absences, and how that's not a valid excuse to stay home. I was taken to the doctor when I passed out at school, and was told that I "passed out from pain" and released. At nineteen, my fatigue was diagnosed as "weakness illness" (whatever that is) and was inappropriately put on anti-depressants that made me sleep 14 hours at a time. I missed too much work. In my thirties I had migraines where I felt my head would explode. Some days I'd feel like there was hot acid rushing through my veins. Again, dismissed as depression.

Back in those days, it seems that fibromyalgia was not recognized at all. Thus, the patronizing and dismissive diagnoses of "growing pains" and "weakness illness" were made.

Today, fibromyalgia is what's left after they rule out everything else. I had just about every test imagineable.

There is no cure, just management of symptoms.

On a good day, I can get some things done. But if I do too much, I pay dearly the next day.

On bad days I have to ration my energy out to basics, and take naps. The dust will wait. Prioritizing is important, and things-to-do lists are mandatory but flexible. I find that I'm becoming more forgetful all the time, and that does scare me.

There are no miracle cures.

As far as I know, most fibromyalgia sufferers do not want pity. But we'd gladly accept some help with the housework, cooking, a shoulder massage, or just a friendly visit.

Family comes first, even if it's only a phone call or email. There's never too much pain to hear news like my son(s) buying a new car or getting a promotion at work, or to have time with my husband or sing with my grandson.

With parenting, love is not enough. But sometimes it's the best one can do.

Fibromyalgia Awareness Day - May 12, 2010

Fibromyalgia is a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and multiple tender points. It may cause sleep disturbances, morning stiffness, digestive disorders, anxiety, TMJ, cognitive or memory impairment, visual disturbance, and other symptoms. The cause is unknown.

©2011, Mary Lou St. Lucas

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Mary Lou St. Lucas is a former stay-at-home mom who has participated in custody and divorce-related support groups. She often speaks out through impassioned letters to local newspapers regarding issues affecting quality of life for children and families. She has experienced divorce, including the heartbreaking decision to give up daily contact with her two sons for what she believed was their best interest at that time, as well as the societal stigma attached to being a non-custodial mother. She emphasizes the importance of kids having BOTH parents in their lives on a regular basis, even if the parents cannot or will not be married anymore. She hopes other parents will see that there may be alternatives to the standard custody arrangements, depending on the individual situation. She writes from her perspective of today instead of revisiting and dwelling on the painful emotions of her past. She strives to live a full life in spite of a recent diagnosis of fibromyalgia, and believes a sense of humor is mandatory. mlstuff.blogspot.com/2007/08/male-bashing-t-shirts.html or E-Mail.

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