Checking in

It's been a while since I've posted.  It's been a combination of feeling like I've been hit with a Mack truck or being busy trying to catch up from being run down by said truck.  I was getting back to feeling like I'd been run over with a Volkswagen until the rain and cooler weather hit yesterday.  Oh my!!  When it hit it was quick and viscous. My pain went from my normal Level 5 to Level 9 in about 15 minutes. I was out running an errand and thought I was going to have to call a friend that lived close to where I was and see if I could veg on her couch until Bill got off work and could come pick me up.  I decided that I wanted my own bed and made it home driving slowly and on the back road.  Went to bed and only slept about 4 hours but it was enough to keep me up all night.  I've been up since about 8:00pm Wednesday night with the exception of about 2 hours this afternoon.  I'm headed to bed now to hopeful sleep more than 2 hours. 

Check out Apple Creek Cove, my blog where I'm going to attempt to write about ways that I've found to be able to maintain a semi normal level of domestic bliss in spite of my Fibromyalgia, Chronic Fatigue Syndrome, Myofascial Pain Syndrome, Peripheral Neuropathy, Peripheral Lymphedema, Sjogren's Syndrome, Arthritis, four herniated discs, Carpel Tunnel Syndrome, short term memory loss, sleep apnea and depression.  (I need to check my doc's notes because I feel like I'm leaving something out of my collection of diagnoses.)



As I head off to be at 4:13AM, here's my final thought for Thursday:

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.

 

September 4, 2010 Pain = 7

Today was fairly productive.  I was actually able to get out the door by 11 am.  Not bad considering I didn't get up until 8. It only took me two hours to drive 4 miles to the bank, make a deposit at the drive up window and then go to Walmart and pick up 6 items.  By the time I got home, my head was pounding but I stayed up instead of taking a nap so that maybe I can get my sleep pattern back on schedule.  My biggest accomplishment for the day was that I was able to  sort my button stash by color and match up sets if I came across them. 

Keep in mind that I got up at 8 am.  It's now 2.23 AM and I am just now beginning to get sleepy enough to go to bed and hopefully fall asleep.  I just don't understand how I can sleep 18 hours one day and the next not be able to fall asleep for 20 hours or so.  I did take advantage of being up and have showered and washed my hair for church in the morning.  Since I'm up so late, I'll need have as much prep done as I can to get there by 10:45.  Bill's ushering and I really want to go to church.  So I have to be ready to leave by 10:20 because ushers can't be late.  I don't want to take two cars because I think it's a waste of gas and because I am cutting back more and more of my driving because it's beginning to be difficult with the cognitive function problems

Good night all.