I don’t know what it is that has caused me to have multiple episodes of dystonic storms/attacks over the past two weeks. I don’t know if its stress as my cocky neurologist (who saw me for five minutes) deemed it to be. I don’t know if it was the painful time of the month I had last week. I don’t know if its just progression of this disorder. What I do know is that it is scary in a way only people with movement disorders can understand.
How do I set any goals? How do I make any dreams? How do I go outside with confidence and pride if at any moment dystonia decides to take over and show me how much more powerful she is.
There is no cure for Dystonia. Most doctors don’t even know what it is and there are waiting lines that are months long (sometimes years long) to see doctors that do know something about dystonia, but not much more than you or me, or don’t know what they can do about it. Most of us are just waiting, waiting to be told what is wrong with us only to finally see someone who tells us its is all in our heads, pschologically. They take our money. They take our health insurance. They take our time. We pay for medications that only dull our symptoms, but don’t take away the problem. We fear losing our jobs if we haven’t lost them already because of the fatigue and the spasams and…
Of course I am stressed. Here I am in school trying to get ahead in my life, for my kids, for me, for my family and trying to study after a spasm attack is like….. Its like asking me to go a few days without sleep and then open a book and take in what I read. I cannot focus. I can’t even concentrate. All I want to do is sleep even if I just woke up.
My boyfriend thinks I forget things easy these days. I tell him I feel more figity. I can’t focus. Even trying to write this entry is proving to be very difficult. I cannot collect my thought and order them and I didn’t even have a spasm today, well a super tiny one in my arm. How am I going to make it through school. Sunday evening after a lesiurley walk in the park, 20 minutes into the walk I began to siginificantly slow down and struggled to lift my left leg until I couldn’t even get my foot off the ground. I stood there for a moment. Then I do what I learned to do and I turned myself around and I walked backwards to the nearest bench. My left foot dranging like dead weight. My balance was terrible, but still I made it to the bench. My boyfriend, who knows I have a lot of pride pretended not to watch me from afar. I made it to the bench and took a rest. Each one of my kids passed by, taking another round on their bikes, asked me if I was ok. I assured them I was, I just needed a break. After about 5 minutes I got back up and did what I could to lift my left leg. It twisted inward, but I was just happy I could move forward without having to do it backwards. My boyfriend caught up to me and walked next to me for the next two rounds that I was determined to walk. We were arguing again so we walked in silence. But he couldn’t help but ask, “Whats going though your head”. I shook my head and said, “I can’t even walk anymore”. He argued, “You can still walk. You aren’t in a wheel chair.” He said a few other things, but I didn’t hear clearly because it wasn’t what I meant and I wanted to point out that I have been temporarily in a wheelchair because of this. He was right though. I was still walking. Painful as it was becoming to do so I was still walking. I walked to the park like a perfectly healthy normal human being and then about 20 mintues later dystonia said NOPE! you’re going to struggle to walk.
So after 1 round of healthy and two more rounds of zombie walking we began to walk back home. Standing straight was so hard and breathing was painful. My boyfriend even turned to me and said, “you are in a lot of pain aren’t you”. Struggling to breath I confirmed with a nod. Had he not been helping me watch the kids ride safely across the streets on their bikes, I think he would have carried me home. Instead he rubbed my back with his hand and continued to walk very close to me. I told him to catch up to the kids and get them home quickly and he could come back and get me. He refused to leave my side.