Over the last few days I have gone from thinking from one point of view to another. The reason for this is that on Friday and Sunday night I fell. Both falls set of many hours worth of seizures and spasms. Sunday nights fall was the worst. No one was in the room with me when I fell, and I have little memory of the day itself so we can only guess what happened. However one thing I am sure of is that is I really hit my head when I fell. What I hit my head on we don’t know it could have been the piano, the computer, the box or my bed. I am lucky that I didn’t do myself any real damage. However that fall in particular caused a lot pain, which consequently meant that I spent the majority of Monday unable to feel my right leg as my brain had disconnected from it, which was not an enjoyable experience. On both Friday and Sunday night, I experienced moments where although I was conscious I was unable to communicate properly. I found that I could not form words or get my mouth to move. Sometimes I was lucky and I could wiggle a finger to tell my mum I was conscious. This really freaked me out and got me thinking. The following picture describes best how I have felt on and off over the last few days.
I need to learn how to balance having some sort of normality whilst also making sure that I do not push my body over the edge. Like everything in life it is simply a learning curve, one that with time I shall eventually master. I need to remind myself often that I have only been suffering for about 8 months, I am still at the beginning of a very long road. I need to have patience and trust that everything I go through will give me the strength to keep on battling everyday, and eventually beat Dystonia. So for now I shall take deep long breaths, stay calm, and keep fighting on.
One day I shall beat my little Dystonia alien once and for all.
Rebecca, I see the topic of “normality” coming up so frequently and certainly I’ve struggled with this concept most of my life. My conclusion is that “normal” is a rather elusive concept that differs for everyone. I’ll put to you that we can lead a “normal” life cluttered with the challenges Dystonia brings our way. That’s just our “normal,” or perhaps your “new normal.” Life is fluid: human beings evolve, our health ebbs and flows, friendships form and change. 8 months into Dystonia at age 20, you have a remarkable attitude and are finding your way beautifully and poignantly. There is so much for you to be as you are, yes a different, more challenging life but not a lesser one. -Pamela-