One of the more frustrating things, I find, is people really do not understand that when I say, "I cant" that does not mean I do not want to.
I have been told to "push through the pain", "suck it up. You can do it". With this disease that is not the case. If I find myself overdoing it then my wife and I will reap the rewards of my overdoing it.
I can give you can example, but this one was my fault. I wanted to play basketball a few years back, I had not had the disease very long, nor did I understand the consequences of what would happen if I participated in said basketball game. The game lasted about 20 minutes and it was probably 80 degrees outside, and about five minutes after I finished I knew I was in trouble. I could feel the twisting starting in my legs and by the time we got home my head was twisted around so I looked like an Owl. This went on for 3 hours, and it was a painful three hours, I decided that for 20 minutes of basketball this kind of pain was not worth it, but so many people had said push through, you can do it! there was a lack of understanding on my part and on the part of the crowed with which I found myself. I have since understood the times, although it may be difficult, I have to say I can't do something, and it is not because I do not want to it is because of the consequences that will arise after the activity is over.
I have come to terms, sort of, with the fact that there are times that I cannot do certain activities, but few around me see the consequences or have to live with these consequences so they see it as, I do not want to. Until you have walked a mile in someone else's shoes you cannot know nor imagine what will happen if I try to do something I know will cause the whole family to be in an uproar, just because I was selfish and did what I wanted, and did not consider my family and what they would have to go through afterwords. It is my duty as a husband and a Father to determine what is the best course of action for my family. Most of the time those decisions are very difficult! I can't be at church all of the time I want to, but cannot because I must think of my family, If I know I do not feel well and am going to have a seizure it would be irresponsible for me to go anywhere that includes church because my wife will have to try to get me in the car, and we will disrupt the church service people will turn around and stare as it is going on, and the people at church do not need that distraction, and their distraction will only be for a few minutes. My wife does not know how long she will have to try and take care of me, and I did it all because I was selfish. With this disease I cannot operate that way. Some may understand, some may try to understand, others won't care and will think I just do not want to do anything.
I cannot control what people think about this disease they do not have it, but I do. I would ask that you try to understand. If I say I cannot do something I really can't, and chances are if yo had the disease you would want people to be understanding of what the consequences are of overdoing it. I am trying to learn the limits of what I can and cannot do, and it is very difficult, but this is my everyday so we as a family have to try as best we can to manage it. all I ask is that people I come in contact with, people I know try to understand. I want to do all kinds of things during the week, but I can't do that either.
So the next time someone with Dystonia or any other disease says they cannot do something please just drop it. Do not keep begging them to do it because you do not see what happens after "the fun" is over! you get to go home and not think about what others may be going through, and we need to be reminded that others have pain physical and spiritual that we do not know about so just understand and let it go. Movement disorders are difficult and most of the time no one sees the pain or struggle everyday is.
If you have read this. Remember that tomorrow someone may not be able to get out of bed like you can, and be thankful, someone may not be able to go to work, and if you can be thankful! and if you know someone with a movement disorder try to be empathetic. I am trying to educate people on my daily life because it affects my whole family, and I think it it one that needs to be told.
Thank you and God Bless. If you would like to follow the blog you can click the follow button, or click the subscribe link on the page! thank you
I have been told to "push through the pain", "suck it up. You can do it". With this disease that is not the case. If I find myself overdoing it then my wife and I will reap the rewards of my overdoing it.
I can give you can example, but this one was my fault. I wanted to play basketball a few years back, I had not had the disease very long, nor did I understand the consequences of what would happen if I participated in said basketball game. The game lasted about 20 minutes and it was probably 80 degrees outside, and about five minutes after I finished I knew I was in trouble. I could feel the twisting starting in my legs and by the time we got home my head was twisted around so I looked like an Owl. This went on for 3 hours, and it was a painful three hours, I decided that for 20 minutes of basketball this kind of pain was not worth it, but so many people had said push through, you can do it! there was a lack of understanding on my part and on the part of the crowed with which I found myself. I have since understood the times, although it may be difficult, I have to say I can't do something, and it is not because I do not want to it is because of the consequences that will arise after the activity is over.I have come to terms, sort of, with the fact that there are times that I cannot do certain activities, but few around me see the consequences or have to live with these consequences so they see it as, I do not want to. Until you have walked a mile in someone else's shoes you cannot know nor imagine what will happen if I try to do something I know will cause the whole family to be in an uproar, just because I was selfish and did what I wanted, and did not consider my family and what they would have to go through afterwords. It is my duty as a husband and a Father to determine what is the best course of action for my family. Most of the time those decisions are very difficult! I can't be at church all of the time I want to, but cannot because I must think of my family, If I know I do not feel well and am going to have a seizure it would be irresponsible for me to go anywhere that includes church because my wife will have to try to get me in the car, and we will disrupt the church service people will turn around and stare as it is going on, and the people at church do not need that distraction, and their distraction will only be for a few minutes. My wife does not know how long she will have to try and take care of me, and I did it all because I was selfish. With this disease I cannot operate that way. Some may understand, some may try to understand, others won't care and will think I just do not want to do anything.
I cannot control what people think about this disease they do not have it, but I do. I would ask that you try to understand. If I say I cannot do something I really can't, and chances are if yo had the disease you would want people to be understanding of what the consequences are of overdoing it. I am trying to learn the limits of what I can and cannot do, and it is very difficult, but this is my everyday so we as a family have to try as best we can to manage it. all I ask is that people I come in contact with, people I know try to understand. I want to do all kinds of things during the week, but I can't do that either.
So the next time someone with Dystonia or any other disease says they cannot do something please just drop it. Do not keep begging them to do it because you do not see what happens after "the fun" is over! you get to go home and not think about what others may be going through, and we need to be reminded that others have pain physical and spiritual that we do not know about so just understand and let it go. Movement disorders are difficult and most of the time no one sees the pain or struggle everyday is.
If you have read this. Remember that tomorrow someone may not be able to get out of bed like you can, and be thankful, someone may not be able to go to work, and if you can be thankful! and if you know someone with a movement disorder try to be empathetic. I am trying to educate people on my daily life because it affects my whole family, and I think it it one that needs to be told.
Thank you and God Bless. If you would like to follow the blog you can click the follow button, or click the subscribe link on the page! thank you
This is exactly why I live my life the way I do. If I did everything I wanted, I might be able to accomplish a bit more. However, if I’m. Irresponsible, then my daughter and hubby have to deal with the consequences-not just me. Putting what i want first IS selfish. My hubby has shed enough tears, I don’t want to make life for those I love more difficult than it already is. They are the ones that deal with the worst, see me at my worst, yet still love and care for me.
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