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 allow my wife to feed me. I would wait until I could do it myself, but sometimes that never comes and you get hungry so you have to let the pride go.
We did have our basement flood this year which was fun, My wife and son had to rip up the floor and take everything out of the basement to avoid mold growing on everything. That was back in the last of April. We have had a great friend offer to brick the inside and the outside where the water was coming in, and the brick was donated, and for that we are thankful. It was difficult to have someone who was going to help do all the work because I cannot. I feel helpless, and basically all around worthless, but that is nothing new. This disease can and will discourage anyone who has it, but one cannot stay that way. for instance I was able to attend my church last Sunday and my whole family was there that has not happened in awhile because it was
always something with our health that prevented us from going, and I was able to attend the Wednesday before that so I need to focus on the things for which I am thankful.
I have a wife who has been with me for better or worse, and she has never wavered on the vows we said 21 years ago which is a Miracle in and of itself because most marriages don't last that long anyway despite my health issues. I had 2 storms last night and she woke up for both of them to take care of me and never complained at all, that to me is remarkable.
Still the nagging feeling of not being able to work to support my family never leaves it is always in my mind, and I assume that it will always be there. I feel like a burden to so many because I have to ask for help on just about anything that I would like to do and I do not want anyone feeling put upon because of my health problems.
Right now my wife is laying the floor in our basement, but I cannot help because of the heat. I hear her, I can even feel her exhaustion sometimes, but she keeps going and I cannot help her at all because right now it is to humid in the basement for me to go down there, and my skin still feels like it is on fire.
My hips are twisting at the moment along with my neck a portion of this I wrote sideways because my neck was turned, but that is just the nature of the disease, and there is no cure in site. This is the life that I have been given so I need to make the most of it, but it is difficult sometimes when you cannot play with your Grandchildren or have to leave thanksgiving or Christmas, or even church fellowship dinners because of the disease, or do not get to go at all.
These are just a few thoughts that were in my mind, I do not share all of them because no one wants to hear that. but just to share a few.
If you are healthy enjoy it because it can be taken away in a heartbeat. If you think you hate your Job think of not having one at all believe me it is not a constant vacation. There is a follow link at the top right of the blog please follow if you are interested in the life of a Dystonia Patient. I will try to post more frequently, and as my health allows. God Bless