This is the reality for every Dystonia patient and if they are old enough to remember they remember when everything changed. for me it was October 16, 2016. I started like a normal day except I had ear pain. I went to work thinking nothing of it assuming that it was one of my ear infections that I usually once or twice a year, and I would go to the doctor and he would prescribe and antibiotic, and I would feel better in about a week. I was wrong. I went to the Doctor, and he did prescribe antibiotics, but this time was different. I just did not know it at the time.
So I carried on with my day I had to drive to Ada ,which was about three hours, to troubleshoot a network issue. Little did I know that it would be the last. I got back about five having the job completed and the issue resolved, and said goodbye for the night to my coworkers whom I thought I would see the next day. Yeah was I wrong.
That night I had a Dystonic storm that lasted about three hours so we decided to call an ambulance to get me to the hospital because there is a combination of medicine that can stop the Dystonic storms, and again I thought it would stop I would go home, and start work the next day. I was wrong again.
|Can't beat good friends|
After I was released things felt different my mind was not there all the time, I could not focus. I would describe it to my wife as fading in and out. on the way home I remember being in the car leaving the hospital, and the next we were home. I have no memory of riding home, but my wife said I was talking the whole time, but with a glazed look over my eyes. The next Monday I went to the Doctor not feeling well still, but figuring he would release me to go back to work, but he did not that is when he informed me I needed to fill out short term disability papers, because I may not be going back to work. I did not know what to say this is not what I had envisioned, but it was now my reality.
|My Wife and one grandkid|
My wife of 21 years has stood by me no matter what stupid things I have said or done. If we have to leave early from an activity she will encourage me. I feel like I have ruined the whole day because I cannot do anymore than what we have done, but she does not see it that way. She sees that on the good days she gets to spend time with me, and she is not concerned how long it lasts. She is just happy we have the time we do.
I still struggle with depression I suppose I always will some days are better than others, but since I have a form of dystonic neuropothy I cannot go outside on hot days because my skin feels like it is going to boil, so I have to stay in a cool place, and not do too much or I will give myself an extra Dystonic storm, and I usually have 2-3 a day anyway. I do not need any extra.
|My Daughter and 2 Grandkids|
The purpose of this post is that if you are healthy enjoy your reality because others are not so fortunate. My life is not terrible, yes I go through periods of depression, and we have financial struggles, and I have mental struggles, but things could be worse
, but this is my reality. As you go through your day today be thankful if you have a Job don't always be waiting for Friday. Enjoy being able to get up, some do not know if they will be able too. Enjoy the sun for me I cannot. Enjoy your reality because it can change in a heartbeat.
If you read this blog please click the follow button at the top right of the page so I know if this is worth continuing. If you have read feel free to comment I do have the right to not publish the comment if I deem it inappropriate. I hope today you will enjoy your reality as i will try to enjoy mine. God Bless.