Sunday, June 12, 2011

Sleep, Pain and Fibromyalgia

My sleep study seemed to go well.  The doctor will give me a call Monday or Tuesday to let me know if there were any changes from my first one.  My only complaint was that the nurse woke me up about 5:15 this morning. Had she disconnected the electrodes and let me sleep even another hour, it would have been so much better. I finally got awake enough to drive home and climbed into bed as soon as I got here.  I'm not sure that I slept at all.  Once sleep is interrupted, it's hard to go back to sleep. Sometimes impossible.  Many times, I have been awake for 24 - 36 hours because the pain is so severe that it is impossible to get comfortable enough to sleep.  When I finish writing this, I'm going to bed, hopeful that I will be able to sleep.  I'm definitely tired enough. I only had 6 or 7 hours of sleep.  I need almost twice that.

I feel very blessed that my pain has remained at a Level 3: Your minor pain is strong enough to get your attention. You resort to Over-the-Counter (OTC) medications. Had it not stayed low, I'm not sure how I would have been able to sit still long enough for the nurse to glue the electrodes onto my scalp (and my hair).  While she worked, we talked about Fibromyalgia, what can cause it, how it is diagnosed and how it is treated.  Her mom suffered a disabling injury at work several years ago and shows all the signs of having Fibromyalgia. Like most of us, she's having a hard time finding a doctor who will listen to her.  It's sad that that we have to fight so hard to get the treatment we need and deserve. It's sad that family, friends, employers and even doctors are not willing to believe that we are in the severe pain that we truly experience.  We are no longer able to do things that we once could do. Instead of the support we need as our pain changes quickly and severely, we are called lazy and drug seekers.  

I did nothing today but sit and relax, hoping to maintain my pain at Level 3.  We went to the Saturday night healing service at church tonight.  Our priest held my head and prayed for healing before he anointed me with oil.  Next he prayed for Bill to have the strength he needed to care for me. I thank God every night for my wonderful husband who sacrifices so much for me.  I am no longer the woman he married.  No longer the woman who loved to hike, hunt and fish with him. No longer the woman who loved to keep a clean, organized and inviting home for him. No longer the woman who loved to cook healthy, good tasting meals for him. I am now the woman who sits with her feet propped up to keep her pain down to a manageable level, in the midst of a cluttered home.


1 comment:

  1. I'm also blessed to have a husband who is understanding of my illness. It took a few years for him to "get it", but I just kept feeding him articles about FMS and CFS.
    We're coming up on our 11th anniversary and I am no longer the woman he married. I was active, a good cook, and kept a clean house. Now I too am the woman who sits with her feet propped up to keep the pain down.


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