Skip to main content

Mental Anguish

I have yet another doctors appointment tomorrow at 9 in the morning. It seems to me that all I do is visit doctors. I think I keep the medical field in business or at least keep my doctor in his Mercedes. This time it is to discuss new medication for my Neuropothy, or at least that is what they think it is. I think my mental state is I have given up on doctors try to sort out what I have and what I do not have,  at this point I think they are just coming up with big words to describe symptoms that they cannot explain.
    So far no one has been able to explain why or what causes a Dystonic storm they just know it is not an epileptic seizure, and that it is not a seizure of any kind. It just when the brain desides to throe random signals around in your brain that cause your arms and legs to twist, and it causes some type of mental issues when it does, but in there defense the brain is very complex. I just wish sometimes they would say that they did not know, but as for anyone those words are hard to say.
    All I know is that when I have a Dystonic storm I can get very angry, and I am not an angry person normally my whole personality seems to change during the storm, and I have noticed with everyone that it takes longer to regain what I was, and I never return to the person that I was before this all started. I can tell you that my personality has changed since I got this disease, and my everyday normal.what ever that is, has changed, and with every storm I lose just a little more of what I used to be. If you knew me in high school you would have known me as a fun loving laid back guy, and if you were to meet me now I have totally changed from what I used to be. Thoughts that I have never had I have now. my mind has worked different than most peoples anyway. I try to stress to people when I can that my mental state sometimes is not good, and there is no good way to describe it. I am not angry at anyone although I may appear to be. My mind runs so fast sometimes that I can't keep up so I have to go somewhere quiet and try to collect my thoughts, if they can be corralled.
   Sometimes they can't so I may have to quietly slip outside and leave where ever I may be at the time. Sometimes I may appear confused, most of the time I am not confused I am just pondering things more than I used to. I talk less, and ponder more which most of the time is a good thing, but it is a change in my behavior non the less. Most people with Dystonia do not like to attempt to talk about the mental stress the disease puts on them they prefer to not discuss it, and I can understand that, but again, I am different I discuss how i feel and the symptoms that I am having on various days. Many people with Dystonia do not like talking about the mental stages of the disease for fear they may be called crazy. You may call me crazy if you like and it will not affect what I write or bother me in the least because there are times this disease will make you crazy. Thoughts, actions, and anything else you can think of.
   This is not an easy disease to deal with, and I will continue to say the reason that I write is so whomever reads this may get a glimpse into what Dystonia is and what it can do. Understand there is no cure for the disease they can just treat the many symptoms that come along with the disease, but most of time the mental part is left out and all that is talked about is the physical which in and of itself is painful as well.
     Just keep me and my family in your thoughts and prayers as we try to deal with this disease, and as my family tries to deal with the many mental phases of the disease that no one wants to talk about, but we all know are there. believe me there are many times that I think I am going crazy and my wife has to assure me that I am not that it is a part of the disease. There have even been times I thought my wife was trying to poison me, and yes that sounds crazy, but it is just one of the many things she family deals with on a daily basis, and I do not remember saying that I thought she was poisoning me she has to tell me later when I can comprehend what she is saying.
   I titled this mental anguish because that it the feeling I have today. Tomorrow may be different only God knows.


  1. Anyone who knows me, knows I don’t have a temper. I can honestly say I’ve never been mad at my hubby when clear minded ( dystonia free). Getting angry isn’t something that I have in my temperament. It’s why I don’t tell people who have a temper that it’s easy to control. However, when I have a seizure, I get mad, glad, happy, sad, and can be really mean. ( Scientifically, the neurons in my brain are not following the correct pathways). I’m so thankful my hubby understands because at times I have been so angry when he’s trying to keep me from hurting myself! God blessed me with two amazing caretakers who let things go, repeat things over and over because I can’t remember , and love me through the anger and the meanness. ...and I have felt like I was totally losing my mind quite a few times. There are other weird things that occur as brings humility...and thankfulness for the good times God gives. However, I don’t control my own brain, and that’s scary. I’m not the person I use to be, but God has changed many perspectives of mine and character traits along the way. I’m thankful for God’s grace and mercy and strength to face each new day. Love you...and know I understand and pray for your family.


Post a Comment

Popular posts from this blog

Living with Dystonia My Story. Follow me on my Journey for a cure

My Life With Dystonia It was about Ten years ago, My sister was going through a Hard time with this disease. I did not understand it. For some reason we don't take up a cause until we are affected by it. She had undergone DBS surgery you can read more about that from the Link. 
  She began to have Dystonic Storms, Link to what one Looks like to come later, I would take care of her it was a tough Job, but even tougher for her. I never dreamed I would later have the same disease. There will be more to come financial struggles, and yes there will be some triumph. I Just want to take you on this journey with me. this is a Terrible Disease it affects the whole family. Please this may be boring at first, but will you follow the Journey  

My Life With Dystonia These First few writings, or musings, I guess some would call them are going to be about My Daily life Some of the Struggles that People around do not Even realize we have. Close Friends do not Understand the Daily Struggle.     I was Working at Pioneer telephone and was a Network Technician. The Job was not always fun, But it was better than not having one at all. I was close to getting My CCENT for the techies out there they know what that it but just to say it would have meant very Much to me to get it. I was much like everyone else, but after work I noticed I was exhausted. It was normal at first, I thought, everyone was tired after work Right? Then I began to notice what my fellow employees could do after work. It was amazing to me and I began to wonder. at sixteen years old my sister Got the Disease, but she could handle it better, she was more equipped. I was a man who had to support my family. So I continued. Ignoring the signs of the Disease. Thinking i…

Springtime in "Tornado Alley"

Springtime in "Tornado Alley" Spring time in, "Tornado Alley as it is called, is not a particularly great time for those who suffer from my type of dystonia. The Electricity in the atmosphere can drive the electrical signals in your brain crazy. This will be a short post. Well, because of storms and electricity in the air. It is very hard to concentrate during these times.   My wife and I used to sit out on the porch and enjoy these "Lightning Shows" together, While we where rearing our six children, and it was a getaway for us after the children had gone to bed. That time is long past even lightening 10-20 miles away can cause a Dystonic Storms.., Like today. We have since moved into a house with a basement which helps,
and I can wear Puma hats because of some material in them that helps a little as well, But after awhile you get it feels like kind of a prison when you have on day to a week like these. It is hard on my wife as well because she is constantly ru…