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Sitting in Silence

 Today my anxiety is at about Level 9 not sure why, but then again there never is a understanding of why things happen, and that was conveyed by my doctor yesterday, He said "your brain is wired differently than anyone else " so I am uniquely and wonderfully made although some would argue about the wonderful part.
   It is frustrating to go to a doctor and have them tell you that there are no answers. They do not know why I cannot feel electricity, or why I have storms at different times, or why my muscles twist and move at random, why anxiety comes with this disease, but the one thing he did tell me is that I am one of the most resistant people he has ever met to modern medicine, and that is because of the way my brain is wired, I picture little black and white wires running through my brain. is what he says.
  today I cannot figure out what is in my head I just feel trapped inside of it and not able to make sense of anything going on. I cannot take what is going on in my head and have the words to bring it out of my mouth, and it is very difficult on days like this for the family because I am distracted, or as my wife calls it "blah" because I have no personality on days like today, or at least it is hidden and I do not know why.
   At this moment my skin feels like it is crawling with fire, and no matter what I do it does not go away. It causes me to sweat profusely, but my doctor upped that medicine that is supposed to help that because he says a normal 8 hour drug lasts about 3 for me if even that long.
   My hands, arms and neck twist at random as well today more than usual so I look like an owl again, very painful, just in case you were wondering, but the good news is I have been able to stay away from pain medicine so far. I don't know how long that will last, but i am going to hold out as ling as I can.
    My symptoms seem to be all rolled up into one today. Most of the time I have one or the other, but today neither the mind or the body want to cooperate with each other. They seem to have a mind of there own and battle one another instead of working together to make the body work correctly.
    I woke up on Monday and had forgotten how to use the coffee maker, so my wife had to show me. I am not ashamed to admit that I have cried because I have this disease, and I get discouraged, I struggle with depression, and as I previously stated anxiety, but those are all human emotions sometimes I can control my emotions, and sometime my emotions control me, which is not a good thing so sometimes it is better to sit in silence rather than try to explain what is going on, and again I want to emphasize that is not me being rude, or not wanting to visit with people it is the fact that if I say something I am not sure what it is going to be, or how it will come across, because I have no Idea what is going on in my head. I just know that it is full and I don't know how exactly to express it. So it is better for me to sit in silence than to try to explain what is going on, because I truly do not know, and if I knew I would gladly tell someone. I feel lost that is the best way that I know how to explain it everywhere I go I feel lost, like a stranger.
   I feel like I do not belong here and I need to get out of this position that I am in, and what position is that you might ask, and the answer would be I do not know. that is the best way I can explain it.
   I am on an Island alone and there is no way off of it. No one knows that I am lost no one is looking for me there is no rescue coming I am just lost. So if at times I sit in silence maybe you will be a little empathetic, because I am on an Island that you cannot see or perceive and I am lost in my own head, and to be silent is the only way I know how to deal with it.
    This Post is one of the many reasons I call it the ramblings of an idiot, but i want you to be able to somewhat see the world and the mind through the eyes of this dystonia patient.
     I do welcome comments if they are appropriate, and there is a follow button on the top right of the page that you can follow the blog if you so choose. Thanks for Reading and God Bless


  1. Did the doctor tell you why drugs don’t last long in your body? They don’t in mine either, but I don’t know why. Silence is also a huge important factor at times...silence and no lights. I totally get the forgetting part as well. Thankful for patient caregivers. Still avoiding pain meds as well...hope and pray we both can continue!God bless.

  2. He said the brain is very different in patients with Dystonia so there brains Come up with " work arounds" which would make an ordinary 8 hour drug last only about 3 and 1/2

    1. That explains a lot! Drugs never last long at all...I know about the “work around” because it’s why I have to constantly change drugs and amounts. I also have to switch between liquid, chewable,etc. Thanks for the info!


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