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 most likely to have a Dystonic Storm because my brain does not process all of the arguing well.
Another thing that is new is the ability to feel stress between people. If 2 people are upset with one another I can tell,
and again it causes my brain to run is what I call it. There have been situations since I have had this disease that I have had to get up and go outside and just sit and do what I call "Pondering" think about something else, because the stress in the place I was is to much for me to handle. In these cases it does not necessarily result in a storm, but there have been many times that I thought about running away and not coming back. It was real at the moment, and I still have those because somehow I think it would be better even though I know it would not. In that moment I am not thinking rationally, nor can I be under any amount of added stress.
Another interesting development that just recently came up after almost 10 years of having the disease is the ability to follow people in conversations. Sometimes it seems they jump from topic to topic and then connect it somehow and my brain does not pick up on where they connect they seem like two different trains of thought. I know this is just me because other people can follow just fine. I cannot, and it puts added strain on my already stressed mental state, and I don't get it as people would say.
These days I spend many hours alone thinking about different aspects of my life. I think of how I have changed from the happy go lucky guy to a much quieter person, and that is not all bad it is just different for me. I had never been one to spend much time just thinking about life, and purpose, stress, and sometimes I do this to avoid stress.
I want people to understand that this disease changes who you were. so if you meet me somewhere and I am not as happy to see you as you might think that I should be. It might just be that my life has changed so dramatically I am not the person that I once was. I get discouraged much easier now, which is not easy to admit, but it is the truth. My financial situation is not what it once was which adds stress, and this is constantly on my mind, and I am not sure anyone understands the weight that it carries. I cannot support my family I have to rely on SSDI to do it, but in some ways that is good. We have never gone without we have friends and family that help us out, but pride gets in the way and if we need help I hate to ask. I think we all are that way. Pride is something that needs to disappear in our lives if we are ever going to be the person that God intended us to be. There is no room for it.
So if you see me sitting in a chair just lost in thought, that does not mean I do not want to talk to anyone. It just means I have alot to think about and at that moment in time it is overwhelming and I do not know what to do about it. weather to stay or run sometimes is the question in my mind and I have to constantly fight the urge to run, and again I do not know if these things are true with my other siblings I just know how I feel, and sometimes it is downright discouraging, and not many people around me understand that, and sometimes I think that they might feel better if they did not
These are the Ramblings of an Idiot. Just the thoughts today of a Dystonic patient that is feeling overwhelmed by everything that is going on in my life right now! It is tough, but I know that there are those who have it worse than I, but today my mind is racing and I have no way to stop it so I continue to fight the urge to run.
If you are a reader of this blog please click the follow button at the top right of the page. I do not know how may people read it, but it helps me to write, and it would help me if I knew people were reading. thank you and God Bless.
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 most likely to have a Dystonic Storm because my brain does not process all of the arguing well.
Another thing that is new is the ability to feel stress between people. If 2 people are upset with one another I can tell,
and again it causes my brain to run is what I call it. There have been situations since I have had this disease that I have had to get up and go outside and just sit and do what I call "Pondering" think about something else, because the stress in the place I was is to much for me to handle. In these cases it does not necessarily result in a storm, but there have been many times that I thought about running away and not coming back. It was real at the moment, and I still have those because somehow I think it would be better even though I know it would not. In that moment I am not thinking rationally, nor can I be under any amount of added stress.
Another interesting development that just recently came up after almost 10 years of having the disease is the ability to follow people in conversations. Sometimes it seems they jump from topic to topic and then connect it somehow and my brain does not pick up on where they connect they seem like two different trains of thought. I know this is just me because other people can follow just fine. I cannot, and it puts added strain on my already stressed mental state, and I don't get it as people would say.
These days I spend many hours alone thinking about different aspects of my life. I think of how I have changed from the happy go lucky guy to a much quieter person, and that is not all bad it is just different for me. I had never been one to spend much time just thinking about life, and purpose, stress, and sometimes I do this to avoid stress.
I want people to understand that this disease changes who you were. so if you meet me somewhere and I am not as happy to see you as you might think that I should be. It might just be that my life has changed so dramatically I am not the person that I once was. I get discouraged much easier now, which is not easy to admit, but it is the truth. My financial situation is not what it once was which adds stress, and this is constantly on my mind, and I am not sure anyone understands the weight that it carries. I cannot support my family I have to rely on SSDI to do it, but in some ways that is good. We have never gone without we have friends and family that help us out, but pride gets in the way and if we need help I hate to ask. I think we all are that way. Pride is something that needs to disappear in our lives if we are ever going to be the person that God intended us to be. There is no room for it.
So if you see me sitting in a chair just lost in thought, that does not mean I do not want to talk to anyone. It just means I have alot to think about and at that moment in time it is overwhelming and I do not know what to do about it. weather to stay or run sometimes is the question in my mind and I have to constantly fight the urge to run, and again I do not know if these things are true with my other siblings I just know how I feel, and sometimes it is downright discouraging, and not many people around me understand that, and sometimes I think that they might feel better if they did not
These are the Ramblings of an Idiot. Just the thoughts today of a Dystonic patient that is feeling overwhelmed by everything that is going on in my life right now! It is tough, but I know that there are those who have it worse than I, but today my mind is racing and I have no way to stop it so I continue to fight the urge to run.
If you are a reader of this blog please click the follow button at the top right of the page. I do not know how may people read it, but it helps me to write, and it would help me if I knew people were reading. thank you and God Bless.
I have never handled confrontation well...yes, I’ll admit-if I can, I leave. More frequently than not, I can’t leave so I’m stuck and nervy. I don’t handle tension in a room well, and I feel it strongly. My daughter says it’s quite strange how well I sense a situation and get impressions of people. I’m not sure why I’m so keen to it...but I feel it. If I’m stuck in it, I will start talking fast and not stop. It’s known to my family...once i start talking fast, they get nervous. My mind is racing. I’ve discussed with you the problem of talking and then it’s as if they aren’t speaking English, at least thats the best way I can explain it. Also remember, you are dependent on God for your sustenance...not SSDI. He owns the cattle on a thousand hills and he is taking care of you. I wish I could help...I would lie beside you and listen if I was there. Just like “the good old days” back in highschool. I miss those talks...and I miss you. I wish i could give a top on controlling the running of the mind, but I have yet to figure that out. Strangely, I’ve had many of these symptoms since long before any diagnosis of dystonia. I’m proud of you for being so open...I’ll admit I’m not. Perhaps that’s a fault...or perhaps it’s just a character trait. Thanks for giving us a glimpse into your life...because even if we have the same symptoms ( which we don’t) , we aren’t all going to be the same or handle it the same way. I’ve had days when I wished I could walk along the river alone ... with just my thoughts. I can’t be alone unless I’m home...even then no one wants to leave me alone. I get the running part ...I always called it a fleeing type instinct....it’s become natural to me. We don’t all handle this life the same, tho, because we are different people, with different environments, with different needs, and different personalities. Love you! 💗💗
ReplyDeleteRunning. My body cannot even walk slowly let alone run. I don’t know when was the last time I ran. I can’t remember if I have - ever. I suppose I have at some time in my life - perhaps when I was a child. I know that you talk about your mind running. I don’t think that has ever happened to me either. I suppose that since I am Mother Goose, it is my lot to waddle. I explained the Mother Goose thing in a comment on this blog once. I have never seen it since and have wondered if anyone else has. Have you seen it, Joshua? If you have, perhaps you can tell me how to find it. It is probably wherever my mind is.
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