I was athletic. I was in martial arts. I ran. I worked out. I spent time outside and gardened, walked stairs instead of rode elevators. I parked far away to walk farther. I practiced yoga. I was fitness instructor….
Now, I am afraid. I am afraid that after a walk or run or a workout, if I make it through the workout (I often do) I will go home and suffer. More often than not I am perfectly fine, with maybe just mild symptoms, but on other days I struggle to walk and deal with multiple spasms and twisting and pain or worse… I struggle to breath.
This year, it’s the struggling to breath that has kept me from consistently putting on my running shoes or my running clothes, even to go for a walk. Except for martial arts, which I practice about twice a week these days at tai chi pace, I hardly work out at all anymore. Even going to class for martial arts makes me nerves, but I love how supportive everyone is and how several of my instructors have learned to helped me adapt to modify for my left side or how they’ve learned when I am having a bad spell from a terrible spell. They remind me to do what I can and rest when I need. They know I’m the type to push myself hard so sometimes, they’ll whisper in my ear to take it easy when they see the symptoms begin. They knew me before dystonia… Don’t get me wrong I can still defend myself, but I will suffer for it later.
My sanity is being tested by this latargic fearful lifestyle, all for the sake of breathing. It isn’t the workout itself. I am still fairly functional enough to excercise, but it’s the “side effects.” It’s when my body starts to slow down, to rest to recover that my body goes haywire and I squeel and cry and groan as my stomach and my chest and my arm and leg and face tighten and lock and twist and bend or hyperextend. The air won’t come in and it won’t go out. And then finally it’s as if my body says “ha ha jk!” and every muscle in my body relaxes enough for me to gasp for air. I begin to feel alive again thankfull I can breath, but then just as quickly as I gasp and feel alive my muscles tighten back up and I can’t breath in or out again. This happens several times over and over.
If I am lucky enough to have it happen when I am home when my boyfriend is there, he is there by my side stroking my hair softly, gently telling me to calm down when he sees me begin to panic. Sometimes he says nothing at all and he just lays next to me, his warm body next to mine until it’s over. Than he tells me he loves me.
In the beginning he use to panic too. He thought I was going to die. Now he understands differently.
In the past if I was worried or stressed or just had a ball of energy to expend I would go for a run or a walker or a hike or whatever and now it excercise that is my biggest triggers if not the cause. My best outlet is gone and I am screaming inside craving for it, itching for it. I want it so bad, but I can’t seem to get out there anymore without memories of not breathing haunting my brain.
I laugh when people tell me to try yoga. I wish I could. Should I tell them I was taught and certified to teach yoga just a bit over a year ago… I wish I could find a style of yoga that was nonweight bearing on my left side and didn’t require balance or any stretching of my muscle on my left side. I wish I could find a yoga that would not irritate my foot or hip when my ligaments/tendons are swollen and painfully throbbing as if they are about to explode from the inside out.
The pain of those swollen tendons/ligaments is unbareable. Something as simple as walking can leave me with swelling for days and the pain is intense, undescribally painful. It makes me agiitated, tired. All I want to do is lie down to alleviate the pain, but the pain takes days to disappear and then I feel like a lazy ass for just lieing around so much at home.
All my energy has to go to my work, my school, tending to the kids, getting the kids to school and from here and there. Then at home I just want to put my legs up.
When I have less pain or none at all and my energy is back, I get up and I do things. I remind myself to take it easy. I do take it easy, but then at the end of or near the end of whatever I am doing, when I still feel good I say to myself, “I can go a little longer” and forgetting about the side effects I do. And it feels great! I get stuff accomplished. I finish projects that have been staring at me in the face from my bed or my sofa. I am happier. I have plans. I have goals. I workout, easy of course, but I work out. I am normal again and oh it feels so wonderful. I do it again the next day. Maybe for a week or more or less I continue this, because one day at the end of the day I am a bit too tired. I mean, oh man I am really tired. OMG I am so tired, so so tired. Maybe I went too far. I can’t really tell where. Honey, I am really so tired. Do you mind making dinner tonight or can we go out to eat. Or maybe we can just pick something up because I’m too tired to go anywhere. I am so tired. Why am I so tired. They tell me to just rest, relax. They have it covered. So I rest, relax and then I can barely get up for dinner. My mouth…I… my arm, my leg…oh shit I over did it.
Sometimes I have small episodes. A goodnight’s rest, maybe even a nap will help me recover. Other days I have storms, those too can vary in severity, but they last longer and I need a lot more rest after.All of them I can handle, deal with, manage except for the breathless ones.
Please no matter what just let me breath! Please just let me breath!