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Even Those Closes to Us Do Not Understand - random thoughts

       It still amazes me that even the family that are closest to me still do not seem to  understand the mental part of Dystonia. Sometimes the mental toll that this disease takes is far worse than the pain that is causes trying to deal with depression is hard enough. I can be in a room full of people and still feel alone. My mind can't keep up with certain things to which I never gave a thought. keeping track of a certain train of thought, or just trying to remember what you were going to order at a restaurant can be difficult.
    The pain with this disease often cannot be seen so you look just fine, but your muscles are twisting like crazy and it is very painful just to stand, yet they will continue to ask to to do things thinking you are lazy, or just do not want to help, which is certainly not the case. I want to help, I want to work, but so far the Lord has not seen fit to let me go back. it is what I want, but as the saying goes we don't always get what we want.
   Sometimes even the smallest things that can keep your mind busy irritate some people, because like I said in the above comment they don't understand. They constantly get frustrated with because they cannot understand what we are trying to say, or trying to get across.
   This Disease has a huge learning curve. I am not there yet, I am still learning and will be learning until the day I die. The disease has affected my Mother and Older Sister far worse than it has affected me.
     I was lying in the dark last night as sleep escaped me, as it often does, I started thinking back to what I was doing before the dystonia hit. I was an IP Technician, had been a Systems Administrator, and now I am reduced to not knowing what a day will hold, or what I might say that might offend someone when that was not the intent,or what my mood is going to be tomorrow because I never know. We can make plans, but we can rarely follow through. It is all my fault.
   Music is something that the Lord has given me to get through the dark days, and believe me there are days where the smile is fake, and i am sure that could be said for all of us. but this mental part is very difficult to explain, thoughts are difficult to keep in track, but music will comfort me. He will speak to me through music it is a very special tool during those days. but I will talk about that another time.
       For family of Dystonia patients Just remember that mentally they may be having trouble keeping it together. I am a think talker, which for me it seems that I disagree with more than half of the things that come out of my mouth. I keep it shut more than I used too. I am not the same person, not as outgoing. People would not call me fun loving any more Probably. I know this "season" in life will pass or I will pass one or the other, but God is constantly teaching! we need to be constantly learning. He gave us his word and that is a great comfort because when no one gets you He does. He made you. He made me. I may not be normal in your mind but God made me this way for a reason and I have to trust he will get me through. I hope one day to get back to work weather it be work from home or work in an office. I Love web programming. I love programming in any sense because of the creative part of it, not a fan of the templates that have seemed to take over the Internet, but that is just me. Only the Lord knows if I will go back to work, but i would like to see people have a more understanding of the mental aspect of the disease. We have seen mental disease is not something to be taken lightly, so maybe be a little more understanding, don't look down on those who have mental illnesses, try to understand. They need help just like with any other disease.
    Again If you read this, thank you, these are just the thoughts and ramblings of an idiot probably, but if you want to continue to follow please hit the follow button on the top right of the page. or you can subscribe by email.


  1. It is true that those around us - even in our family - can’t possibly understand what a person with Dystonia walks with every day. No one else understands the chronic pain, soreness, muscle spasms and other physical symptoms that go along with Dystonia along with other neurological issues and what it does to your mind.,Being in chronic pain contributes to a feeling of being alone, saying things that aren’t meant to be hurtful but are, forgetting things that we should remember and a dozen other things. That doesn’t mean that we aren’t loved and that others didn’t wish that they understood. I love you with all my heart and wish that I could help you feel better. Our Lord suffered such pain for us that we could never understand and did it willingly because he loves us. He understands how we feel and has promised to be with us until the end. I love you and wish that I could help but I know that only he can so I will trust him to meet all your needs and comfort your soul.

  2. The part of dystonia that even I don’t share. It can be scary sometimes...especially when huge blocks of memory are gone. So much of this I so you...and pray that God teaches us what he needs us to learn.


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