Sunday, June 3, 2012

When There's Nothing Left To Do

Sometimes you just have to wine.:(  Sorry, but I'm in a bit of a winey mood today.  It hasn't been a bad day, nothing has gone wrong.  In fact, I've had quite a nice day.  I saw the Grandkids for a while and made cookies with them.  Got my car washed which I've been wanting to do for a long time, inside and out.  Yeah!  And I ended the day in the hot tub-Ahhhhh!  Soothing my aching muscles. 
Which brings me to the point of this post.  I am often asked to describe what it feels like this Muscular Dystrophy that I have.  Many people confuse it with MS, due in part to my age and my sex and in part to the fact that I am ambulatory.  It is difficult to describe, especially because I have come to realize that everyone doesn't feel things the way that I do and have felt things for most of my life, so I have nothing to compare it to.
Recently though, I saw a commercial on TV for a lung disease\(COPD, I think) where a man is walkin around with an elephant beside him.  It illustrates two things, one that he feels like he has an elephant on his chest and two, that it is difficult to breathe.  It is a good illustration as it is descriptive without being too graphic but it clearly gets the point across.  I've tried to come up with a similar illustration and the best that I've been able to come up with is that of someone moving throughout their day with rocks strapped to their limbs, bottom and head.  Try to imagine what that might feel like if you will. Can you imagine how difficult it would be to walk up a flight of stairs, to reach for something above your head, dress yourself, sit in a chair?  In the most simplist terms, my muscles turn on and become 'hot' as though they are active and they don't know how to turn off.  So I can become quite stiff, sore and extremely tired.  Have you ever started a new exercise routine after not having worked out in quite a while and gotten up the next day feeling like you can't get out of bed?  Even your hair hurts!?  Yeah!  That's what it's like.  Some days its better than others.
This disease is also systemic and progressive, meaning that it can and does effective different systems of the body and that it can progress with time.  There is also some debate and there are studies going on right now trying to prove whether or not it effects the cognitive function.  I can tell yoou without a doubt that it does!  That is what bothers me the most.  I often find myself at a loss for words that have always come easily for me. Words, both written and spoken are like magic for me.  I love to be able to use them, to read them and to write them and to speak them.  Often I struggle to find words that for everyday things, my mind gets tangled and I can't get my mouth and my brain to coordinate.  It is inordinately frustrating.
Yet, I have hope.  I know that there is work being done every day, research that is constant.  Breakthroughs keep happening new technology will help further the fight.  And my biggest hope lies in my faith, as I know that I am not alone and that in my darkest hours, I will be carried through it.  So, there is always a light that shines bright for me.  I know that with Him I am strong.
I have really learned so much about myself since my diagnosis.  I've learned that I am strong that I had imagined.  I've learned that it's okay to ask for help when I need it and there is no shame in it.  And so much more!  I may not be able to beat this disease, but I can live with it.

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