My mind wonders what I could be doing if I did not have this disease where would I be working, would I have the same job as I did when I had to stop working. These are all questions that I have, but no answers. I think of how much easier my wife's job would be if I could do the normal things that a husband is supposed to do.
I have been looking for work that I can do from home, but those jobs seem to be few and far between, and I have not gotten a call back in 2 years on some that I am qualified for. Dystonia can take alot from you it can even take the identity of the person that you thought you were, and change your whole outlook on life. I constantly have to ask my wife to do things for me, or my daughter, and I do not like it. I feel like a burden to those who have to take care of me and how much easier there lives would be if they did not worry about me all the time, but from moment to moment no one ever knows what I am going to do, if my mind will go crazy, if I will have a seizure,or Just twist into a human ball, but someone always has to be on the lookout for these things because most of the time I cannot see the triggers, or I see them to late. This summer more than most my skin feels like it is on fire and I cannot seem to get that under control, and neither can the doctor, but I guess that should be expected. Doctors are perplexed by this disease, and there are some that say it does not exist. I guess if you ignore facts then you can convince yourself something does not exist, I do not know how they rationalize it.
Today has been a struggle, more so than most days, I am a little more discouraged today than yesterday, but I am trying to be thankful for the good days that I have. I need to learn to focus on the positive part
I know I do not have things as bad as others, but the reason I started this blog was to give people an insight to my family's day, and it helps me to write it. It seems therapeutic somehow, and maybe if people read it they might get a glimpse of what a day in the life of a Dystonia patient is like.
My family is struggling, and it is a hard thing to admit, but it is the truth. We do not know what to d sometimes. It is either laugh or cry one or the other. Sometimes I cry I will admit it. sometimes it is my wife that is crying, and I have seen my daughter cry even though she does not know it.
I am still twisting inside from the seizures that I had earlier my rib cage feels like it is being pulled to one side and my legs are tight it feels like a charlie horse in both legs. So sometimes it is hard to put that smile on and go out into the world, and pretend that everything is fine. Some days are easier than others today was not one of those days.