Skip to main content

A Desperate Struggle

This week has been a particularly poor week for me physically and mentally. It started off with the diagnosis of neuropothy last week and it has begun to get worse through this week. I am only going on 2 hours of sleep because  Dystonia, along with many other diseases,  doesn't allow your mind to slow down everything just seems to move faster and faster in your mind as you lie there trying to get some rest, but rest seems to allude me.
   I know I am not supposed to dwell on what was, but sometimes that is easier said than done as with most things. I feel trapped in my own head and I cannot seem to get out! I dream of Dystonic storms now. When I am asleep I am dreaming about being awake having a storm, or not knowing where I am, and then ultimately it leads to my waking up and having a storm. I cannot tell you how many times I have been dreaming about having a Dystonic storm only to wake up and find out that it is real. It is very weird for me. This week has been so hot I haven't been able to step outside because my skin feels like it is on fire, and if I try to step outside it feels like it is boiling so what do I seem to do? O drift back to when I was younger, had a job and was able to go outside and play soccer with my boys. I even go back to thinking of High School When I was playing basketball, and even in the summer when it was 105 degrees outside I could play, and it never bothered me a bit, but slowly these things have been taken away, and I have a hard time accepting that I can't do those things anymore.
    I am sure everyone comes to a point in their life when they realize the days of there youth are gone, but not having enough energy to get out of bed to play with my grandson is a hard pill to swallow! I never know if I am going to be able to get up in the morning.
    Sometimes I feel lost not knowing which direction to take. I guess no matter what direction that is chosen someone is not going to be happy about it, after all how many of the decisions that you have made have appeased everyone,
    I know I have this disease for a reason! sometimes it is just frustrating not knowing what that reason is, but that is information on a need to know basis and I guess I do not need to know! I am thankful for my loving wife who has stood by me these almost ten years they have not been easy, nor do I expect them to get easier. I have read of many spouses that once there husband or wife is diagnosed with a life long illness they up and leave, but that is not the kind of wife that I have. Oh we have our days where we do not think we can take anymore, and if I am honest I have had storms that I prayed that the Lord would Just take me, but that is selfish on my part. I have a family that loves me and you cannot put a price on that!
   Remember there are some that do not have a family to share the hard times with, so if you have one be grateful because it is an awesome support system! These are just thoughts that I have had this week so do not judge me to harshly I am only human after all. Just an imperfect human, but I know there is a plan, a bigger picture that I cannot see, nor am meant to see. so no matter what you are going through right now if you have Jesus as your savior you know that everything that happens in your life happens for a reason. I probably have not learned whatever lesson He is trying to teach.
    I will end with this "a faith that is tested, is a faith that can be trusted!  God is not finished with me yet I have some purpose to serve, or he would not have left me here. My Dystonia, My life is not in my hands I do not control what happens to me, and neither do you! Be thankful for the health that you have! yes this has been a week that has been a huge struggle one problem after another, and I do not see any light at the end of this tunnel, but I must hang on to the only hope that I have. I am sorry if this appears to be just rambling thoughts. It probably is, but it was in my thoughts so I wrote it down or typed it up whichever you prefer! that is why I call it Ramblings of an Idiot! God Bless

Comments

  1. You, my dear gosling, get the idiot part of your personality from your Mother Goose. Remember the cookout that we had on Independence Day. It has been a long time since we have laughed and acted as silly. I don’t know whether we were both having a good day or a bad one. It just seems that we were having fun. It felt good to sit beside you and laugh. I don’t know how long it will be before we do that again but it is a good memory for me. I hope that we will be able to make more good time together. I am not sure that everyone else thought that we were funny but I hope that you did and will recall it in your sleep some night and wake up laughing. I want to leave you with happy memories!

    ReplyDelete
  2. It was awesome memory for me as well we haven't talked or laughed like that in as long time. It was very refreshing

    ReplyDelete
  3. Mommy shared that memory with me, and I must admit to being jealous of all of you together celebrating July 4th together. We do have a purpose, and i figure I have one so long as my family needs me. Love you! 💙

    ReplyDelete

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…