It's a sucky word isn't it? Means things don't get better, means instead of working harder & getting better you get to work that hard & if you're lucky you get to stay the same. Now, it's that a joyful thought? Woo hoo, bust your ass for status quo! Plus, it's not even guaranteed, you could work that hard every day & still go downhill. Well with all that can't you see why I signed up?
You may have noticed some sarcasm in that last paragraph. I hate knowing that this might be as good as it gets, that barring something real odd happening I'm not going to get "better". I hate that next month my doc & I will be discussing Social Security.
I just wish I knew where I'd be in 6 months or a year. How far down will I go? It's a bit like falling in to a hole & you can't see the bottm.
I wrote this the other day & for some reason didn't put it up, since I can't remember, I'm putting it up.
Showing posts with label fear. Show all posts
Showing posts with label fear. Show all posts
27 November 2008
29 September 2008
Things running thru my brain
Oh let’s see, how do I begin this. Around the beginning of this year I first heard of Ehlers-Danlos and began to consider a if I might have it. It seemed so farfetched to me, I had the pain I had problems but nothing that severe I thought. So I read more of a research more and asked questions, trying to learn more about this to prove to myself that I couldn’t have it and yet with each question I asked and with each thing I learned it seemed more and more likely that I did. When it finally became fairly obvious that that was what was wrong with me I had asked my neurologist if she concurred. She did. Then I went to Mayo was diagnosed. Thus began the attempt to transition my mindset from that of a person who was trying to figure out and fix what was wrong to one who now knew what was wrong and that it could be easily fixed.
It’s a strange thing trying to figure out what the normal is when what you thought was normal has nothing to do with what is normal. When I was young I thought it was really neat to be able to be so flexible to do the little tricks I could do with my hands. I always had pains but I thought everyone did, growing pains, headaches just plain aches. What kid doesn’t have those things? It turns out most kids don’t have them every day, I did. My sister and my mother had these things too, so in our house it really was normal. By the time I was in my teens I never even bother to mention these things. I’m no longer sought medical attention when I hurt myself by simply walking or just going about my day. I realized there was no point; an ace bandage and maybe a pain killer were all they had to offer. In my early twenties I learned that my tricks were good for a free drink. By my mid-twenties my pain went from I really could ignore, that I could push to the back of my mind if I needed, to something that often screamed, demanded my attention. This began the game of trying to find a doctor who would listen and value what I had to say. Finally I got to the doctors I have now and to the diagnosis I now have.
The hardest part for me is this transition, when do I get to the next stage, how do I move through this and except, because I don’t want to. I’m still me, just a version that is carrying an extra 20 pounds from meds and inability to be as active as I ought to be. I don’t want to sit here and accept that this is that, this is as good as it’s going to be, that I couldn’t get back to the level of activity and ability that I have five years ago. I don’t want to accept that I own a wheelchair, that the only way I can put all these feelings down is to use speech recognition software. (By the way if anything reads really strange chalk it up to the speech recognition crap rather than to me suddenly having horrific neurological conditions.)
Well I guess that’s enough of my ramblings for today.
It’s a strange thing trying to figure out what the normal is when what you thought was normal has nothing to do with what is normal. When I was young I thought it was really neat to be able to be so flexible to do the little tricks I could do with my hands. I always had pains but I thought everyone did, growing pains, headaches just plain aches. What kid doesn’t have those things? It turns out most kids don’t have them every day, I did. My sister and my mother had these things too, so in our house it really was normal. By the time I was in my teens I never even bother to mention these things. I’m no longer sought medical attention when I hurt myself by simply walking or just going about my day. I realized there was no point; an ace bandage and maybe a pain killer were all they had to offer. In my early twenties I learned that my tricks were good for a free drink. By my mid-twenties my pain went from I really could ignore, that I could push to the back of my mind if I needed, to something that often screamed, demanded my attention. This began the game of trying to find a doctor who would listen and value what I had to say. Finally I got to the doctors I have now and to the diagnosis I now have.
The hardest part for me is this transition, when do I get to the next stage, how do I move through this and except, because I don’t want to. I’m still me, just a version that is carrying an extra 20 pounds from meds and inability to be as active as I ought to be. I don’t want to sit here and accept that this is that, this is as good as it’s going to be, that I couldn’t get back to the level of activity and ability that I have five years ago. I don’t want to accept that I own a wheelchair, that the only way I can put all these feelings down is to use speech recognition software. (By the way if anything reads really strange chalk it up to the speech recognition crap rather than to me suddenly having horrific neurological conditions.)
Well I guess that’s enough of my ramblings for today.
Subscribe to:
Posts (Atom)
Posts
