@chrisfd
Hi,
Don't be scared, better the devil you know than the one you don't.
I have had time to get used to my fate and am at ease with it. I look at my fate knowing we all die sooner or later, and there are people fare worse off than I. The beauty of my health issues is I only feel really deep pain and that isn't that painfull either. I try not to think about the consequences ahead of me and focus on what I can get through each day The brain is a wonderful bit of equipment that will try to work around obsticles throw in it's path given half a chance. All I do is work with it. I use Google AI as an index to all the medical books I don't have time to read. Yes, I don't believe everything it throws at me but as an index it is brilliant. It has allowed me to pin point what I thought was happening so I could challenge Doctors with my result and ask point blank do or do I not have this. It helped in focusing their thoughts and giving them the keys to unlock my health issues. My persuit was and still is relentless with AI. It gave me the clue to look at a J tube insertion as a work around for a stomach that takes 2 days to digest anything and a bipap machine that could keep me alive long enough to get a J tube fitted. Daily the body goes into self protect mode and shuts down the body closing the resperation for seconds before the brain realises it is also killing itself and kick starts my breathing again. Scarry the first time but knowing and trusting it will recover itself until it doesn't, which I likely won't know when It happens. I fill my brain with activity, researching and doing work to stop worrying about my pending fate, There is always a chance medicine might throw up some help. Read the other day there is hope for regenerating the nerves meylin coating through a new drug. Sadly not in time to help me but eventually it has enormus possiblities for many people. I have been in the end zone for some weeks now and I rely heavily on keeping the brain active, hopeful it doesn't have the time to try and shutdown. Likely won't work but it keeps me going. There is always hope, keep pushing for the answers which will then give you something to focus on.
Cheers.