Hi,
Dysautonomia is to do with all the controlling nerves of the body that do what they are supposed to do without our thinking or input. My particular bent is Autonomic polyneuropathy which is the two main nerve systems of the body being compromised. So all the organs and all the extremities of the nervous system give me heaps of trouble when they like. My digestive system from top to bottom including bladder and bowel are permanently compromised which impinges on the amount and what I can eat or drink and get rid of. The other side is T2 neuropathy problems but luckily I have built up a high tolerance to pain and it rarely impacts my hands and feet, the chest pains are dealt with by ignoring them, knowing I have a good heart although enlarged helps.
For the last 13 months I have been reduced to a daily diet of no more than 6 slices of quality bread with a slice of shaved ham, the thickness you can see through and 6 cups of tea. Once a week I get to have a very small serving of peas, carrots a small sweet potato and a small piece of grilled chicken. By rights I shouldn't be able to do what I can do, my Dr tells me I'm just bloody minded, and I know that's what keeps me going. I'm finding I have to forgo more and more food types as this crippling disease progresses.
I am fortunate that other than the digestive symptoms the other symptoms are random and don't stick around to long each time, varying daily. I deal with what I wake to find and that can set the nature of my day ahead. It helps being retired and doing what I wish to do at my pace, usually at great rapid pace. The habits of a workaholic, I don't know how to slow down and probably don't want to. Keeping busy diverts the mind from the problems and allows me to move forward. I have found keeping moving helps more than sitting idle.
I can be paralyzed from the waist down glued to the spot for a few moments at a time, to being totally unable to cope with the body and brain not to function and anything in between. Usually the only thing I can do is wait them out until they resume transmission. I have even woken unable to remember how to speak with no concept of speech. Once the first time has passed the panic goes as next time I know what is happening and have to handle it.
In short it is like an electrical cable with a fault in it, sometimes it works and sometimes it doesn't, other times it can cause a lot of sparks! Dealing with it is relatively easy for me, I know it can stop the heart without notice and instantly. No different to anybody dying and we all do that eventually. Mix in all my troubles with a rash of TIA's last year and my life can get interesting to say the least. There being no alternative I have to manage it. It is permanent and progressive so I just let it do it's own thing while I try to fit in my things.
I don't think anybody is silly to be concerned about their health. I research everything I can about my ailments referring to recognised authorities and not the anecdotal stories. Once you know what the alternatives are it is up to us each how we deal with our illness.
I maintain I no longer care about my health, but the truth is I still am mindful of what I should and shouldn't do to preserve life. I'm not totally stupid, yet!
It took me a while to get past the death sentence with a diagnosis of CKD, but you do when you realise there are many of us dealing with CKD every day, just fine. Being told my kidneys had been inactive and shut down for over 18 hours didn't panic me. Being told I'm going to die from AKD did. Now I just have plain old CKD, life's a breeze, at least that is what I try to keep telling myself.
There is always the hope, I suspect that is why I keep going. It maybe missguided but that is it in a nutshell, I can't let go of hope.
Life is not too bad after all, I still wake every day ready to fight another round, stops me getting bored. It is kind of funny in that I'm testing my brain against my body, a fight I can't win.
Cheers