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The Madness

I woke up this morning in an extraordinary amount of pain. The Neuropothy is still bothering me so it felt like mt skin was on fire, However the Dr. changed my medicine I am doing somewhat better in that regard.
  I couldn't feel my left leg or my right had so I positioned myself in a way that I could see why. as it turns out my arm had turn itself all the way around at some point in the night and my leg had done the same thing so I little to no circulation in either. I used my left arm to turn my hand back around so it was normal again, talk about painful, I could feel my arm when I turned it around into the correct position. Turning my leg was a little but harder because I could feel my hip twisting which in turn probably caused the rest of my leg to twist. After awhile I managed to get myself untwisted, but I am still sore from that ordeal.This is not unusual for a Dystonia patient may times I find myself dreaming about having a Dystonic storm and sure enough when the pain wakes me up my wife is already taking care of me because the storm had already started.
   She does not sleep as soundly as she used to because she never knows when I might have a storm, and this is the normal life for a caretaker and Dystonia patient. This is how it affects the whole family. My hip is still twisting it just can't be seen, and believe me it is painful, It will pop out occasionally and my wife will have to pop it back in, so if I am limping if you see me walk that is most likely why.
   In other news I am having one of the days Dystonia patients dread, because they are the worst type of days because I cannot remember anything. I have memory gaps, gaps in time that I do not remember, and do not know where the time went, I can remember before and after the event but not the event itself. My wife will ask me to do something and before I take 2 steps I cannot remember what it was that she wanted me to do. So inevitably I have to go back, or most of the time just turn around, and ask her what she had asked me to do. As you can imagine this can be frustrating for the caretaker and the patient as well because neither of us know how many times I am going to have to be reminded of what I was supposed to do.
    One of the more amazing things is I can still pick up the guitar and play music and remember all the words to a song that I learned when I was 4 or 5, for somereason music sticks with me, and for that I am thankful! there are many times that I am feeling discouraged that I can go play many of the Southern Gospel songs that I learned as a child and it gives me great comfort in trying to cope with this disease! it gives me the strength I need to keep going, and not to give up.
   I will not lie the thought of just giving up and to quit trying has often entered my mind because it seems it would be easier, but it would not I would just end up sinking into a deep depression, and I fight with that already.
   This Disease is a constant struggle with the mental and the physical, the mental being the most difficult to deal with. If you have never had mental issues thank the Lord because they are not a joke as most people treat them they are real, and until you have been where someone else is you cannot judge how you would act, feel, or react until put into that situation. You might know what you would think you would do, but thinking what you would do and being in the situation and knowing what you would do are 2 different things.
   This is the madness of Dystonia each day brings something different, and you never know what symptom is going to present itself tomorrow so there are sometimes I just do not want to go to bed! I figure if I stay up it will be the same day, but we all know that is not the case. Just another day in the madness of a disease called Dystonia God Bless, and if you have read this please click the follow button on the top right of this page I would be very grateful.


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