Aspiring Poet, heartfelt thoughts.I Have Dystonia, bipolar, and an Avid Southern Gospel Music fan

 I am willing to admit that with this disease there comes some mental issues, and things that I cannot help. As much as I try to put on a face of everything is great in my life and I have no problems at all.   No one and I mean no one understands the mental issues that I have! I have been told I mope, and I use it as a cruch not to do anything, but what is missing and what they do not understand I exist in 2 different reality's. My mind exists in one and I in the other, and sometimes I do not know which is which.   Really all anyone ever does is get upset when I do something they do not like, or maybe wrong, but for me in the moment I cannot help myself. weather it is buying a hat, or Playing a video game for Long periods of time. This is not something I enjoy, but I do not know how to stop it, and neither does my therapist!     yelling at me or saying that I am doing this on  purpose is frustrating! for a moment put yourself in my shoes, just for a sec...

I do not have much for updates, except summer is coming which means my health will take a downward turn. I cannot do much in the summer because the moment I step outside into the sun I feel like my skin is boiling, very unpleasant, as you can imagine, While others around me enjoy the summer, and the nice change of pace, I enjoy the Winter or fall, but here we have 2 seasons winter and summer no fall no spring.   It is quite interesting the take I have on the quarantine now that people have been that way for a few weeks, they are starting to get restless, and protests are breaking out all over the country, because people can't feel trapped, I might remind you that this is my everyday, there is no when it is over we will get back to normal and be able to go back out and do all of the things we love to do, because for me the truth is when this blows over nothing will change. I will still feel trapped, I still won't be able to go to most places because of the loud noises. I will b...

    I know this may come as a shock to you, but all of the stay at home orders and the social distancing haven't changed my life my much. I Couldn't go much of anywhere or do anything before this started. So I have not really noticed a difference in my day to day non-activities, and many people are probably like me, and their Lives haven't changed much either.    To those of you you who are always on the go and suddenly had to stop you might just contemplate and remind yourself that there are people who must live like this all the time, and then you can appreciate what you can do once this has passed.     I did not write a single word in March, because I had something else on my mind. I was thinking about my beautiful granddaughter whose birthday was in March she was on my mind this March more than most, and I am not sure why, but it was so. I wonder what she would look like, what she would be doing, and I know she would be a papa's girl. I did not know ...

  Today in my Dystonic journey has been a little rough I cannot seem to get across what I am trying to say to my wife or anyone else in the family. Sometimes with this disease I cannot elaborate on what I am feeling, or it may take me a second or two to answer a question. I am not Ignoring the person that I am talking to I am just trying to process what they said and then I can answer the question appropriately.    When I first noticed this particular symptom my wife would ask me a question or be talking about a certain subject and I would start talking and it would have nothing to do with the conversation that we were having. This can come on suddenly or I wake up and know that it is going to be a long day. Today was one of those such days.     I can seem to write, but I have to stop and think quite a bit about what I want to type or what I want to say. I feel what I call brain zaps where if feels like electricity is fire off in my brain and I cannot control ...

I had my Doctors visit yesterday, and it was interesting as usual. My neurologist knows his stuff, but he is a little Qirky.   I got some news I did not expect though. He is going to send me to a DBS specialist because he thinks that it will help with my type of Dystonia, even though he will admit he is not sure what kind we have.   This movement disorder specialist is supposed to be one of the best in the country he can install the DBS Device and program it. They say it is a new DBS system, but the only thing new about it is the placement of the leads, and they are not Positive it would work. Another Downfall is I would be in a Coma for about three weeks, or however long the Device took to start working, because they do not want me to wake up and have a storm, Which for me brings up another question? If he can program it why can't he stop the storm relatively quickly with the device.   I do not have to have the device put in, but with the medications I am on he has to...

Interesting Day so far in my world of Dystonia. I woke up and couldn't move at all. I was trapped, which happens from time to time, but a little scary none the less. I was aware of what was going on around me. but no one else could tell. a full body charlie horse is what I would refer the pain as. My body slowly came around to where I could move except my legs. They had decided they were not going anywhere for awhile. and that pain in a twisting pain. If feels like every muscle in your legs are twisting and turning.   As you can tell I was finally able to get up and around, but very slowly. usually I am not in this much pain on a Daily basis the pain seems to come and go, but it has not subsided today, and there is no reason for it.   I guess a good day as any for a Dr. Appt. I imagine he won't have any answers either.    My mind had become so erratic! I never used to get angry or frustrated at things, but that part of my personality had changed. I read my post fr...

I am not going to lie. I have had 2 months that have not been good on the physical or mental side. I do not want to be on disability, I do not want to depend on the government to try to take care of me, and I cannot seem to wrap my mind around the disease that I have.   No one even wants to give a chance to someone with my condition, why? am I that worthless? It is beginning to look that way to me. There is no one other than those that have this disease that can relate. they say they "understand. but they don't how can they. Family doesn't understand if the symptoms are not the same.    I am struggling to put into words what I feel, but it can be very difficult at times, because I am not sure what is going on. There are some days I do not believe I have Dystonia and should be able to stop all of the pain, storms, and everything that comes along with it. Is this Disease even real or is it something I have created in my mind?    I cannot convey to you in this a...