Is sleep overrated?

Fall is here. The evidence is all around me - cooler days, the sun setting earlier than last month, pumpkins appearing on porches, ragweed blooming, and leaves blowing about the yard.

I have always liked the Fall season, mainly because Halloween and Thanksgiving are such fun holidays. Due to my fibromyalgia those holidays weren't as fun last year. My foot was in a walking boot due to plantar fasciitis. Wearing the boot threw my body into some odd position that seemed to aggravate my back and legs (I also have scoliosis), so I didn't sleep well due to the pain. Not sleeping led to massive fatigue. As usual, it started a vicious cycle.

I remember going to my doctor's office on a weekly basis complaining of fatigue. The first week he said it might be due to the blood pressure medicine I had just started for PACs, or the fact that I quit caffeine as the cardiologist suggested. I stopped the blood pressure medicine. The next week he said fatigue might be caused by low vitamin B12 or swollen sinuses due to ragweed; we tried B12 injection and steroids. The third week I went in crying, telling him that I was totally exhausted from head to toe, so fatigued that I couldn't lift my head off the pillow, yet in pain and couldn't sleep more than an hour  a few times a night. Going to work each day was draining the life from me. He did blood work to "See what was wrong". He called me the next day to say my blood work was fine and started me on Ambien.

At first Ambien was a godsend. I was able to sleep. Instead of being fatigued constantly, I was just a little groggy and tired the next day. I noticed I did not recall dreams while on it, and I awoke in the exact same position I collapse in. Then as winter approached I realized that I didn't remember what happened in the evenings at home - entire movies watched with the family erased from my mind, meals that we had eaten forgotten. The edges of my ambien nights, mornings and evenings, were a blur. I was only truly awake from noon to 8PM. As one can imagine, I soon became a zombie. I moved through the mornings and evenings with no awareness, clarity, or memory of the day.

I don't know how to explain it, but even though ambien made me lose track of part of my life, i was afraid to stop it. At least I had half a day. Before ambien I was so fatigued that I didn't really have a day. So stayed in it and lived the mechanical zombie life until my doctor suggested I see a specialist.

When I finally saw a rheumatologist, he asked me to stop ambien and try trazadone at bedtime. The switch made an instantaneous difference. I awoke refreshed and felt like I had slept for the first time in a year! I started recalling evenings and mornings. I got my life back.

As I watch the leaves fall outside my window today, I think of last fall, and how I missed so many months of last year while living in the constant zombie-like state of fatigue. Sleep is not overrated. It is necessary for life. Sorry Bon Jovi, it makes a great song (I’ll Sleep When I’m Dead), but in reality not sleeping turned me into the living dead.

I cringe when I hear people casually toss around the word "fatigue". A friend mentioned that she was fatigued from all the concerts and activities she attended over the weekend. She remembers what she did the night before, this morning, and over the weekend, her eyes are not sunken into her skull, her face doesn't look hollow. She is "tired", but not "fatigued".

Perhaps only someone who has experienced the life-sucking power of fatigue can understand the difference. I think I will sit here with my cup of decaf and watch the pretty colored leaves fall off the trees, and remind myself to be thankful later today when I am able to remember what I did this morning.

What is the secret to coping with fibromyalgia?

Humor! Humor is the secret to coping with fibromyalgia. I have to laugh at myself once in a while to keep from crying. I plan to post Fibro Funnies when something makes me laugh. I invite you to share your fibro funnies too.

Just the other day I had a humorous conversation with my family as I opened a bottle of vitamin D3 to take with my evening meal.
Me (what I thought I said): There are 100 caplets in this bottle.
Family's Response (as they laugh out loud): Well, let them out.
Me (what I actually said): There are 100 catholics in this bottle.

My son continued to laugh hysterically as we discussed what I said vs what I thought I said. He thought that I mentioned the neighbors by their last name. He couldn't imagine why I thought they were in the bottle. I felt a bit relieved, because I am not the only one who makes mistakes.

Fibro Fog oftens causes me to say one thing when I mean another. Sometimes it causes me to spend minutes trying to find the word I want to use, because I know the word that is trying to escape from my mouth is incorrect. Often I end up staring back at folks who are looking at me strangely, as they attempt to figure out what the hell I meant to say. Fibro Fog is my nemesis.

Why hang on tight?

I was at a concert Saturday night (yes, I paid for it on Sunday and Monday) when Emily Saliers introduced a new song as a happy, apocalyptic, typical Indigo Girls song about death. Obligatory laughter came from the audience, and as the song started I thought about one of my favorite genres of movies - apocalypse, post-apocalyptic, dystopian society type movies.

Why am I attracted to this type of movie or song? I believe that there is hope to be found in these movies and songs. The old saying goes, "what doesn't kill you makes you stronger." Fibromyalgia tries daily to steal the life from me, almost as if I were in a post-apocalyptic world of pain and chaos. The symptoms of my fibro are just varied enough to sometimes give me hope, the proverbial light at the end of the tunnel.

I do have some good days, days where I am reminded of what is was like before I had fibromyalgia. Days before every fiber of my being ached with stabbing pains and sleep was not elusive. For every good day, I have two bad days. But the good days, give me a glimmer of hope, a melody of a possible miracle. Could I possibly have two days in a row without pain? Maybe three? A week? A month? Maybe be healed?

I have seen enough end-of-the-world movies to know that one doesn't miraculously return to the pre-apocalyptic life. My fibromyalgia is not miraculously going to disappear. But many times in the movies, the folks work together to build a future that is good, that is better than the bad days.

Please join me in creating a community of people with fibromyalgia, auto-immune diseases, or chronic pain who are free enough to speak of the dark side, hopeful enough to acknowledge the good side, and smart enough to Hang On Tight.