Last month with the holiday break, less work, less working out and plenty of lazy living I gained a few pounds and had less “dystonic” episodes. The same thing happened last year. Then the new year begins and I go back to my workout routine and there I am again struggling to walk at times. First week back at the dojo and this is exactly what happened.
I’ve given up on doctors. I’ve given up on finding a cure. Nobody knows what this is. Its just a part of me. Sometimes I can’t walk right. Sometimes I struggle to breath. Sometimes I get dizzy and I fall. Sometimes I spasm for hours and I’m very very tired all day because of it. Sometimes all of the above at the same time. The pain in my muscles and joints isn’t as bad as at use to be when this all began or maybe I’m just use to it now. Either way when the symptoms begin especially the breathing difficulties or when I can’t talk because my jaw locks I cry or I get pissed or both. Then I try to calm down and I rest until it gets better and then I’m back to “normal”, except these days my new normal comes with that never ending fear of my symptoms being triggered by anything physical that I do.
I suppress the fear more often than not. Its the only way I can cope. I just keep going. I keep telling myself I’d rather try and move and live than atrophy. What else am I suppose to do, wither away? Am I suppose to just give up? Whatever this is: dystonia, stress, a chemical imbalance, or whatever it is, I can’t let it beat me? I have to keep going. When the doctors figure this out in 10 or so years I don’t want to be skin and bone and frail or 400lbs and bound to the living room sofa while my kids are all grown up and I miss out on their entire lives. I am worth something. I have a purpose. I have plans and a life to live.
I would rather spasm for a few hours than atrophy. When the spasms become too much than I take a longer break until they are gone and then I get back up and start moving again. It isn’t a fun way to do things, but it is what I believe is the right thing to do. This is just a part of me now so is school and work and family and love…
Symptoms for a few hours or atrophy is what I have to keep telling myself over and over and over especially when the symptoms are bad. Sometimes I give up for a little while. I mope. I cry. I eat chocolate and snack on crap. I go to sleep. I rest. I start to feel better. I force myself to get back up. I get up I get moving.
Earlier last week I had to bow out in the middle of my martial arts class because I began to seriously struggle to breath. My stomach and chest became so tight I couldn’t stand up straight any more. I rested for the rest of the class. After two or so years of this. They no longer question if I’m OK or not. They seem to be able to see the difference. They too have seen me on a bad day and since then I can see a mixture of pride and fear in their eyes each time I come back to practice.
Yesterday, I ran with my boyfriend. We are finally running together like we’ve been talking about for months. It took bad news from his doctor to really get him going. It was cold out, but a beautiful day. On the walk home after a successful run of ten laps it wasn’t until about half way home that my left leg began to twist inward and all my muscles in my left leg stiffened and stayed that way for several minutes at a time so, I struggled a bit to walk. It wasn’t bad though, in comparison to other times. It was tolerable. He watched me carefully, always an eye on my knee when my leg turns inward. He mentioned that when I slow down my symptoms creep back up. He confessed he feared I would struggle to breath as we got even closer to home. No issues breathing yesterday. Yesterday was a good day.