Hi,
After fighting for better health over 12 years and now finding there is no cure, no treatment and hence only platitudes left. Being a realist it is time to stop as nothing more can be done, despite what people suggest. The Dysautonomia has a firm grip of me and is not letting go. You need to appreciate that the autonomic nerve system controls the organs. Dysautonomia is the corruption of the signals sent and received to and from the brain interfering and or controlling the body functions. Being polyneuropathy as well it incompasses both of the two main nerve systems in the body. With that lack of control I'm just along for the ride and no amount of side issues will change that. None of which can make me anymore comfortable from the dysautonomia effects. I appreciate the suggestions are made for help. They have all been tried with varying results.
Am I better to treat all the side issues which have little influence on ANS or abandon hope and live what time I can squeeze out as best I can( no pun intended when you read further). Everyone about me seem to think I should live a life of discomfort and misery to satisfy their quest for life. I don't, I'm the one having to deal with this disease by the hour, daily.
All those important to me have been advised of my decision, none of them like it but do have some sort of understanding of what it takes for me to get through a day. This includes my Dr, and what do I get. You are depressed, you need laxatives, even my wife is chiming in on that now. The reality is I don't need more laxatives, all I need is for the signals to evacuate the bowel and bladder to work and no I'm no depressed. Infuriated and frustrate to say the least but resolved to live as I see fit.
A good test to feel just what I'm putting up with is to not clear your bowels and bladder for at least 3 days and then not be able to move the bowels, then you might understand what life is like for me. It makes no difference if I'm constipated or have diarrhea, the evacuation is incredible difficult to achieve. Then add in a digestive system that takes twice as long to digest anything than anyone with normal digestion takes. Just when you think you have that licked throw in some restricted breathing through a throat that likes to start restricting air from time to time, because it can.
I'll leave the brain fade and instability problems with the vertigo and poor cognitive skills alone for the moment. By now any right thinking person would have had enough. Now consider, this is every day of my life now.
Believe me I'm a fighter but I know when I'm beaten and it is time to take it on the chin.
Cheers