Sunday, August 20, 2006

Fibromyalgia - No days without Pain

Today is Sunday and I haven't posted in two days. I make no excuses for that. As I mentioned on Thursday, we were expecting a visit from our 15 month old grandson, Brandon. My husband used his entire posting on the anticipated visit. As it turned out, we actually had him for two nights. It has been horribly hot here in Oklahoma and my son's air conditioner never really worked that well and it finally went out completely. We told them to let Brandon stay with us while it was being fixed. It was fun but exhausting especially since we had all of them here - all four grandchildren and their parents - on Saturday for a birthday party. Since we enjoy playing games with Ricky and Glynda each weekend, we stayed up really late playing Lord of the Rings monopoly. Talk about fun - especially when you win - and I did!

So I have been in granny heaven the last few days and have spent today basking in the glow of being a grandmother.

But as in all things good - there is often a price to pay and I am paying that price today. My plans were to catch up on the laundry, do the grocery shopping and clean house. Well, I got the grocery shopping done and I managed to do the dishes and two loads of laundry but that's all. I am in too much pain to do much else.

Ten years ago I was diagnosed with Fibromyalgia. At the time I had no idea what that was. I only knew that everything hurt. Well, as I sit here today the pain has not lessened as I half expected it to. In fact, it has gotten worse. Now, I don't know how much you know about this affliction but I have learned far more than I ever wanted to learn about it. Here is what I know:

  • Every minute of every day I live with pain
  • There are good days and bad days but the good days are more like good bad days
  • Sleep deprivation makes it worse
  • Pain makes it hard to get a restful night's sleep
  • Sleep deprivation makes it worse
  • Stress causes more pain which makes it hard to sleep which causes more pain which creates more stress
  • Family members don't always understand your limitations
  • You refuse to accept your limitations
  • Not respecting limitations causes you to overdo which causes more pain which creates more stress which deprives you of sleep which creates more pain
  • It will never, ever, ever get better and it will never go away.
For ten years it has been a vicious cycle which I have fought vigorously - refusing to give up. My sister-in-law was diagnosed with the same thing several years ago - she is on disability now. I just can't do that. When I interviewed with Joel Comm for my job, we discussed another position I had been offered. It was with a company I knew well and it would have been a nice, relaxing job with little stress. I asked Joel point blank if he could see me relaxing - he didn't hesitate when he said no.

And that's me. My mother once told someone that I would have been the first kid to cross the Mojave desert in a day. My sons come by their ADHD honestly.

The truth is, I thrive under pressure and the Fibromyalgia has just sharpened that part of my personality. When I discovered I could no longer do it all - I began to learn how to say no and how to restructure my life so that the important things would get done. I do my dishes and keep the living room and bathrooms presentable - my bedroom is almost never spotless and forget about my office. My husband has always loved having a clean house but he has learned to either clean it himself (when I'm not around because it makes me feel horrible that he is doing it when I should) or just live with it. The days I come home to find that he has cleaned the bathrooms top to bottom and mopped the kitchen floor are very special days for me and they aren't rare - it is my husband who is rare.

Over the years, he has learned to care for me in ways that are not always evident. I know he loves to barbecue but he allows me to do it because I want to. He allows me to handle the finances even though I am not as good at it as he is because he knows that this makes me feel like there is something in my life that I can control. He even lets me drive if I want to - a lot of men would feel less manly - but he knows without being told, what I need to make my days bearable.

So when I wake up in the morning too sore to move (like this morning), he doesn't make me feel like a slug because I can't make him a huge breakfast - he accepts his toast and eggs and sausage with pleasant surprise that he isn't eating cereal. He knows I will pay for it all day but he finds ways to make my life easier because I cared enough to take care of him.

Living with Fibromyalgia has taught me to trust others with the things that matter and to give up control of the things that don't. Somehow God has taken a negative and turned it into almost a positive. I don't like living everyday with pain but it has made me appreciate those days when the pain is less and I can do more.

I'm going to a specialist on Thursday and hopefully he will have something up his sleeve that will make my days less painful. But if not, I have survived the first ten years okay - and now I have my grandkids to ease the stress so maybe things will get better - one can only hope.