March 25, 2012 will be thirteen years that I’ve been disabled. What began as an eight week medical leave from work to have an abdominal aortic aneurysm repaired turned into a lifelong chronic illness called fibromyalgia. I remember in the beginning I was very angry at God and told him I really wished he would have just taken me home rather than leaving me here to deal with all the pain and problems that go along with this disease. Now looking in the rear view mirror of my life, I am thankful to be alive today and able to think and write.
My life is much harder than it once was, but I’ve learned how to live within the boundaries that this illness has set for me. For instance, I know I only get 2 to 4 hours a day when I feel well enough to do anything. So I need to write in the morning before my shower if I’m going to write at all. Depending on my schedule I can devote fifteen minutes to two hours to this task. If I have a doctor appointment or need to go to the grocery store I need to factor that into the equation.
By 1:00 pm or 2:00 pm I need to be on the couch and napping for at least an hour or three. (The amount of time depends on how I feel that day.) If I don’t nap during the day I will NOT sleep at night because my body will be too tense and fatigued to fall into sleep. I had to fight doctors and physical therapists on this because they all said I would sleep better at night if I didn’t nap during the day. That is not the truth for my body. Anyone who has fibromyalgia needs to figure out what their body needs and wants by listening carefully to their body. Doctors and physical therapists have been a great asset in helping me to cope with this illness but there were some things I had to figure out for myself. Sleep was one of them.
Conclusion for Today: I need to pave my own path in this life. Whether it be through the woods with a chronic illness or what to write on a particular day. I need to see each day as an exciting new challenge to learn something new about life and myself.