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Peek into the Dystonic Mind


The Mind of a Dystonic patient is very different from a normal one things that normally would not bother other people, they do bother me.
   I had another emergency visit to my ear doctor, I had seen him only three weeks ago, I had another ear infection it is the 6th one this year and the year is not done. He said, like so many other doctors before, that there is nothing he can do to prevent the infections i just have to get to him as soon as I feel one coming on. I get fungal infections in my ear because of the neuropothy. It does not matter how hot or cold it is outside I sweat, and my ear canals sweat and cause the skin to get infected, and then I get shooting pains up the side of my face. This is all to familiar the reason I am on Disability is because I had a staph infection in my left ear from which I have never recovered. He put a wick in my ear with a steroid and anti-fungal cream to kill the fungus in my ear, that is very painful I might add.
   When this happens my brain realizes something has changed there is something that is different and it does not like it so I begin to have more storms because my brain does not know how to cope with the change that happened in my ear. So not only am I dizzy, which I hate, I am having Dystonic storms at the same time, and from what the doctor says this will
just be one of those things I have to get used to.
     I have never gotten used to dystonia because the disease by nature does not like change. If my wife moves the silverware from one place to another I will always look to the first place that she had it. I will get confused as to why it is not there because I know it was there before, and then frustration will set in when I have to ask where the silverware is and she says, very calmly. sometimes, I told you I moved it and she proceeds to tell me where she moved it, but the next time I go looking for the silverware the same thing will happen again. This is frustrating for me and my wife, but it is one of the many things that has changed our lives since the Dystonia started. Not many people understand this particular part of dystonia because they do not live it. If more people lived it they would understand a little better of how just the smallest thing that changes can affect the Dystonic mind for years.
    Today my ears hurt because he had to get the fungus off of the ear drum and he had to move a tool around in my ear. Another thing most people do not know is that when a muscle gets pulled or strained or even hit during a medical procedure the brain goes wild. There is no telling how long it will take for that muscle to heal. That is why the recovery time for a Dystonic patient is so much longer than the normal person would be.
    My mind does not process change very well, and I am talking about things like moving furniture, silverware. Now if I get a simple cold or the flue and run a fever that is an automatic trip to the hospital. Most people can take Motrin or something of that nature and get over it, but not me. That is why I try to stay away from people who are the slightest bit sick, because to them it might just be a cold, and then to me it might be a week in the hospital with the doctors trying to keep my storms and fever under control.
    So try to understand the Dystonic mind if you can imagine living in a constant state where you are confused about where you live, how old you are, and then your wife telling you that you do not have a Job when you tell her that you are going to be late. I cannot count the times I have told my wife that I was going to be late for work, and she tells me I no longer have a job, and my heart sinks. I want a job, and I want to work to support my family and it is hard to know that I cannot do that in my current condition. It has been 3 years and I still haven't wrapped my head. It is tough and not many people can understand that.
    So I my sit in silence, and I may ponder things more than I did before, I may be discouraged,as I am admittedly today, and  I may not know what is going on in my my mind from time to time, but cut me some slack because I am pretty sure that if you were in my shoes you would feel the same way.
   I put Pictures of family because they are what keeps me going, and smiling, sometimes. So please do not Judge me to harshly. After all these are just the Ramblings of an Idiot.

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