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Dystonia Unseen Pain

One of the hardest things I find in my day to day life with this movement disorder is exactly that. There is never a time when I am not in pain, and it is hard to describe. My ribs always feel like they are twisting my arm and leg muscles are either twisting or just jerking, sometimes this can be seen sometimes it cannot. As a patient I try to hide the pain that I am in because no one wants to really know the pain this movement disorder constantly gives.
  For example, I play the bass guitar for my church it is something I love to do I also play, or attempt to play the acoustic guitar as well. When I am playing the bass guitar I cannot control the leg movement so it may appear to some that i am having to much fun in church, it is a baptist church after all, but the truth is i can't control it. Sometimes my neck will twitch and get stuck in a certain position and it takes a little while to loosen, and afterwords it is very sore. I have had people ask me why I have to dance when I play the guitar, most of the time I will joke with them and tell them I love to dance, but the truth is I cannot stop it. There are other times where the movement feels more like a charlie horse in my legs or ribs or arms or take your pick of any of the muscle groups and it cannot be seen. These are more painful times.
   The thing I would like for people to understand is when you have a movement disorder such as dystonia there are things that you cannot control, and the pain is constant. I never thought that in my 40's I would need a wheelchair or the help of a cane to get around, or not be able to move at all but that is my reality. So I would ask for people to be a little bit more understanding.
   That is why I started to write my thoughts in the first place, because if people understand the disease they will understand why you are doing what you are doing and you cannot control it. Believe me being in constant pain is not fun. so i Just ask that if you know someone with any chronic pain, it does not just have to be Dystonia have a little compassion try to put yourself in their shoes, yes sometimes I come off as rude to people if I know I need to sit down because I may pass out or my legs may give out, but the intent is not to be rude or ignore anyone. I Just know what will happen, and the consequences of not getting to a chair fast enough will cause everyone more trouble because they will be trying to help me get up, or I know my wife will some might be laughing, and actually one of them might be me.
   With Dystonia you can laugh or cry you choose which one. because when the twisting becomes evident the positions that your body will twist and turn are very painful! sometimes I look like an owl with my head turned almost all the way around. Ask my mom or my dad or anyone who has seen a Dystonic storm, I am not lying or stretching the truth. They are crazy and they are painful.
 So if you see me playing the guitar in church or walking down the street, yes it may look like I am trying to do something stupid, but the truth is I cannot help it! Just remember this the next time you are visiting or talking to someone who is in chronic pain, have a little compassion try to understand, and if you know someone who can't get around because of chronic pain go visit believe me just a few minutes will help! Just to know that there is someone out there who will take the time to visit when I can't.
   If you have read this I appreciate it! I will continue to pass on what I feel because if people just hear about generalized Dystonia since there are so many they will not know what a day in my life is like, and as I have said before it helps me to write my thoughts.
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