Monday, June 13, 2011

My Rollercoaster Life with Fibromyalgia

I've lived most of my life in the south.  I'm proud to be a Mississippian.  I grew up with no air conditioner and never missed it.  Before fibro, I camped, fished, hiked, all kinds of outdoor things in the summer heat.  Before fibro, the heat never bothered me. Today, it took every ounce of energy I had and I never left the house. The air is running full blast but I'm still hot.  Pre-fibro i would have been comfortable if not cool.  Not anymore.  Thankfully when I am asleep, I've got two fans blowing on me and I sleep well.  It's when I get up and try to do housework that it's bad. Today I ended up with a wet wash cloth on my neck. There wasn't much accomplished except a couple loads of laundry that still aren't folded. Days like this make me feel pretty much worthless. I miss the person I use to be.  I miss the being able to keep my house clean so that it's something to be proud of. Instead, I feel like it should be on one of those shows about messy houses.
My fibro pain has stayed down at a Level 3: Your minor pain is strong enough to get your attention. You resort to Over-the-Counter (OTC) medications for several days. I feel blessed for that but my Chronic Fatigue Syndrome has taken it's place. Last night I slept about 11 hours.  I saw my wonderful hubby off to work and went back to bed and slept another 3 hours.  Did I want to get up when I did?  Nope. Could I have slept longer?  You betcha. But I had to get up.  I had to get up, clean up the house, do the laundry and fix a good supper. Otherwise, I see myself as worthless. I'm feeling pretty worthless tonight.  I hope I can sleep but I'm not sure I will.  Between my emotional state and the burning in my legs, I don't know if it's possible.

I suppose the physical acceptance of my illness is easier because I can't argue with a body that refuses to move any more. For the most part, I feel like I've accepted that I am not and never will be the person I was.  I accept my limitations and move on the best I can.  Emotionally, I'm not so accepting.  Emotionally a part of me refuses to accept that I'm a very sick woman.  Most people I read about accept that fact with just a Fibromyalgia and/or Chronic Fatigue diagnosis.  Adding Chronic Myofasical Pain, Neuropathy and lymphedma would confirm it to anyone but me.  Doctors, friends and family tell me that I'm a sick woman and I need to accept it.  Why can't I?

Now that my edema diagnosis has been changed to lymphedma, I'm terrified. I have signs of cellulitis beginning on my lower legs.  The look on my doctor's face when she walked in the room last week terrified me.  Her talk of finding a vascular surgeon if the lymphedma therapy doesn't work has me terrified.  Reading that some insurance companies don't pay for lymphedma therapy has me terrified. Knowing that the pain of the Fibromyalgia and the Chronic Myofasical Pain in my legs may keep me from being successful with the lymphedma therapy has me terrified.  Knowing that once again I'll be running up even more medical bills that we can never begin to pay has me terrified.

On days like today, I feel like a failure and a burden.  I'm only 54 years old.  I shouldn't be a burden to my husband.  I shouldn't be causing him to daily live the "in sickness and health, for richer, for poorer" part of his wedding vows. That was for when we're 80 years old, not now.  Occasionally, I think that I should suck it up and go back to work. I know people who still work with their Fibromyalgia, so why can't I?  We desperately need the income. Then I remember working. 

I remember throwing up because the pain was so bad.  I remember falling asleep at traffic lights driving to and from work. Only by God's grace did I not fall asleep driving. I remember spending my lunch hour in the car sleeping to make it through the rest of the day. I remember being taught a new task and three days later not remembering how to do it or even having been taught to do it.  I remember the feeling of failure because I was no longer the "go to" person.  I remember the feeling of failure that I would never use the degree I had worked so hard for just a year before.

I truly don't know how I survived as long as I did at work when things started to get worse. They got worse quickly, before I really understood what was going on with my body.  My pain levels went up and didn't come down below a Level 7 (This level of pain is the kind that keeps you awake at night, makes it hard to think and act. Your prescription medication only dulls the pain for a short time. You limit your activities in order of importance. You really can't work well)  for almost six months.  Most days it was a Level 8: This is serious pain. You don't want to do anything or be bothered by anyone. You have taken so much pain medication you are unable to fully concentrate on anything. Work is out of the question.  Some days it was  a Level 9: Very serious pain here. You can not concentrate on anything but pain. You should not do business transactions or make any important decisions because of your limited mental state. You can not go to work and you shouldn't drive a car. At this point you begin withdrawing from the world around you.  My supervisor and co-workers were not sympathetic so I pushed myself to be the old me.  The me before the Fibro Flare from hell that lasted almost a year.  Bill was without a job because of the economic crisis at the time.  I had to work.  We had to have my income and my health insurance.  I pushed myself to go to work with Level 8 and 9 pain.  Until the day I could do it no longer. 

I can no longer ignore deny that my life is different.  I'm a sick woman.  I can no longer work.  Will today be the day I accept that?

The tears are coming...

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