Believe me, the last thing that I wanted to do was rely on the government to provide for me and my family, and I never would have guessed at 42 I would be disabled and not able to work. I have been asked why I cannot work from home, and the answer is an easy one, because I do not know what days I could work and what days I could not work. I can have a decent day one day and a bad day the next, or I can go from having a good hour to my brain starting to misfire and the rest of the day I cannot do much of anything, and sometimes one moment I am normal and the next I am having a Dystonic storm it cannot be predicted, and getting people to understand this seems to be difficult for some reason.
I have had people ask me what it was like to be on a permanent vacation. To a disabled person what kind of question is that? Ask anyone that is truly disabled if it is a permanent vacation, or somehow fun. I can almost guarantee that they would rather be working, and one of the reasons is SSDI doesn't cover all the bills that you have even if you cut out most everything. So the caregiver has to seek out a way to make money, and at the same time take care of the Dystonia patient and this puts stress on the caregiver and the Dustonia patient, because in my eyes my caregiver who could be on disability herself if she had not chosen to stay at home and raise our children, which I am glad she did, has to find some way to make more money so we can keep our noses above water. She is happy to do it, but I want some way to contribute and believe me I have tried, but with Dystonia being so unpredictable even a work from home job is out of the question.
So sometimes bills have to be paid late. We get the calls that we are behind on certain payments or bills and I tell them the same thing."I will pay you when I can", because when you have about 35.00 to your name they do not want that. It is hard to split it between creditors.
I only bring this up because this is a huge cause of stress in the family and it aids in the depression that I fight. Yes, even though some say as a christian we should never be depressed about anything. I can admit that I am and have been. giving advice and then when put in a position where you have to take your own advice is a little more difficult.
Yes we make a budget just like everyone else, but the bills outweigh the income so we have to decide which ones to pay and which ones will have to wait, and that is not what I call a vacation.
If i could go back to work today I would! I would love to get up and be able to go back and do the job that I was doing 3 years ago, but I can't I became disabled three years ago October 16, 2016 I will never forget that day. I have been told to forget it and move on, but every year when that day comes around I will remember.
I do not like talking about financial things,but it is a strong component of what brings stress and everything else that is bad for a Dystonia patient.
Dystonia changes you, as I have said before I am not the same person I was before this disease. I see my family struggle to stay above water, and I see my wife trying to make enough money for us to get by. I see her taking care of me, and she worries about me when she has to leave. I Love her with all my heart and I know that she loves me because she is sticking with me when it would be easier just to leave. With all of the storms, and the quirks that I have developed over the last 10 years I could not blame her if she left, but she won't, and I thank the Lord for her, because on top of all the stress that I cause she has stress and problems of her own, and I hate her having to worry about finding enough extra income to make it work.
So the next time you complain about having to go into work, or working on a holiday remember there is someone who would love to have that luxury, and disability is not a vacation. It causes more stress and hardships than anyone can imagine if they have not gone through it themselves.