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

Today was one of those days where I woke up feeling like a stranger in my own body. Dystonia had decided to assert itself more than usual, with muscles twisting and pulling in ways I couldn’t control. It’s a familiar dance of discomfort and unpredictability, but no matter how often it happens, it never gets easier. This physical turbulence was just the beginning, as it ushered in a deeper, more pervasive sense of depression. There’s an unsettling weight that accompanies these moments—a feeling like I’m being scrutinized by invisible eyes or that something ominous is lurking just out of sight. It’s as though a dark cloud has settled over my mind, casting long shadows on my thoughts and actions. I don’t know what’s coming, but the fear of it is enough to keep me constantly on edge. I spent most of the day in a quiet, reserved state, moving through the hours like I was underwater. Words felt heavy, and each sentence was an uphill climb. When someone asked me a question, my mind went blank

I had to go on disability three years ago today, and I was proficient in PHP, CSS, Python, Helped schools with WordPress issues, and set up and designed networks using DHCP  and also DNS worked with them helping with web design and front end and all of the backend work as well    Dystonia does not allow me to use those skills that I worked so hard to perfect, and it feels like all the time and effort I put in was wasted because now I can do it if i could do it. There are some days that I am fine and feel like I could go back to work and resume right where I left off and then there are other days that I couldn't     This is mentally taxing and discouraging knowing that you can do something, but not get the opportunity to do it. I actually loved what I was doing, and it was providing a decent living for my family, and now I cannot. I feel I have let them down because I am supposed to look out for them and there well being, but with everything getting so expensive I am not sure how

 Today my anxiety is at about Level 9 not sure why, but then again there never is a understanding of why things happen, and that was conveyed by my doctor yesterday, He said "your brain is wired differently than anyone else " so I am uniquely and wonderfully made although some would argue about the wonderful part.    It is frustrating to go to a doctor and have them tell you that there are no answers. They do not know why I cannot feel electricity, or why I have storms at different times, or why my muscles twist and move at random, why anxiety comes with this disease, but the one thing he did tell me is that I am one of the most resistant people he has ever met to modern medicine, and that is because of the way my brain is wired, I picture little black and white wires running through my brain. is what he says.   today I cannot figure out what is in my head I just feel trapped inside of it and not able to make sense of anything going on. I cannot take what is going on in my

   One Very new symptom for me to understand was stress. before I got this disease I really did not get "stressed" about things because I didn't understand it. I would go through my day and whatever would happen would happen, and I would leave it at work, and I would come home and my wife would be under stress, and I can remember asking her why? This disease gave me the answer I was looking for in that category.    Things that most people would not consider stress I , or should I say my mental state has caused me to see as stress, and when a Dystonic patient has extra stress added to there daily routine they are likely to feel worse and have more storms. For me any type of argument is hard for me to take if it is real, my brain does not deal with it well, and I do not know if this is the case with my other siblings or if this is just me. I can tell if 2 people are playfully arguing, but when it gets into a heated discussion my body brain goes crazy, and that is when I am

    I haven't posted in awhile because I have been on a roller coaster of emotional, financial, physical, and mental issues that all play a part in how a person feels Physically, and that is weather or not they have Dystonia.      There is always the question am I going to be able to get out of be tomorrow, and if I do what am I going to be able to do. Some days I can do more than others I just never know. I can feel perfectly fine one moment and the next feel terrible, and that my friend is how the disease works, and when the bad days come all you can do is lay in bed while everyone around you works. Just this week my wife had to feed me because my arms were to week to lift the fajita. sounds weird huh? Yeah, when your wife has to feed you because you cannot feed yourself it is a weird situation, at least for me because I like to be able to feed myself, but when your arms are twisting around your back it gets a little difficult, and believe me it took awhile for me ever to all

Imagine if you will that in the blink of an eye everything you knew changed. Everything you could do every exercise you enjoyed, every sport you Loved to play, and your job, that you say you hate, but really you don't want SSDI, was taken away. Put yourself there for a minute or even a second. Picture what your life would be like, the drastic changes that would have to be made the financial cuts of things you enjoyed were no longer affordable. If you played an instrument you may not be able to play it with this disease there is no end to what it can effect, or a sport you loved to play, no longer even an option, and all in a span of about 12 hours. This is my life.   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

We are now finally in the process of trying to get everything cleaned up after the recent flooding removed us from our room in the basement. It is now dry enough to start trying to seal the concrete again and get it ready to move back into. My wife cannot wait, she does not like clutter, but we have a basement full of clutter upstairs. A friend from our church has been kind enough to help us out, and through various donations we have enough to begin    We began the process this weekend. I should not say we because it has been so hot I haven't been able to do much. I am still having the problem with my skin feeling on fire, but that will get better, but probably never go away. because of this we have been going to bed earlier and the new medicine allows me to wake up earlier so I can enjoy a little bit of the day before the heat sets in.     We got the brick and mortar picked up so we can brick the outside of the finished part of the basement and seal it, that is where most of t

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 wor

I woke up this morning in an extraordinary amount of pain. The Neuropothy is still bothering me so it felt like mt skin was on fire, However the Dr. changed my medicine I am doing somewhat better in that regard.   I couldn't feel my left leg or my right had so I positioned myself in a way that I could see why. as it turns out my arm had turn itself all the way around at some point in the night and my leg had done the same thing so I little to no circulation in either. I used my left arm to turn my hand back around so it was normal again, talk about painful, I could feel my arm when I turned it around into the correct position. Turning my leg was a little but harder because I could feel my hip twisting which in turn probably caused the rest of my leg to twist. After awhile I managed to get myself untwisted, but I am still sore from that ordeal.This is not unusual for a Dystonia patient may times I find myself dreaming about having a Dystonic storm and sure enough when the pain wake