Hey Lemmy,
I haven't been doing well lately. I've had widespread and slowly progressing neurological issues for a couple years now - random pain and muscle twitching in my whole body, vision disturbances and damage, dysautonomia, and more. Virtually every individual thing my body could sense had weird, erratic behavior.
The U.S. healthcare system has been too slow to fully diagnose me, much less treat me.
I wanted to believe I'd be able to live with this condition, but recent events have changed that perception very quickly. This week, I lost the ability to breathe normally, and started having large-scale violent movements when going to sleep (e.g. my arms would fly off the bed or I'd suddenly lurch my body forward). At this point, I have to read the writing on the wall: there is something very wrong with my brain, there is an unknown, uncontrolled process damaging my central nervous system, and it has now gotten ahold of my vital functions. This very well may be the end, and I may leave this world at age 21.
My mind reacted to this news in a peculiar way. Instead of becoming extremely anxious or depressed, my mind suppressed these thoughts and started flashing some of the happiest memories back through my mind, telling me what I good job I did and achieved so much in what little time I had. I had so many meaningful and joyful experiences even if I could never lead a conventional life. There are so many amazing things to learn, awesome video games to play, cool projects to build, and adorable cat pictures to fawn over. My life was vibrant and filled with so many amazing and wonderful experiences. I loved being alive and I am so grateful for the privilege to exist.
So, my question is, what would you want to do in your final days? What kinds of things would you think about and do? What would you revisit? Would you like to spend your final days at home or go to a hospital and try to stay alive for as long as possible? It's getting a bit hard for me to think now, since I can't really sleep anymore, so I think some of your ideas will help me.
I think about this often. I keep a memento mori to remind me: since life is finite, we are all living our final days, it is only a matter of degree.
The best conclusion I've managed is not to spend final moments in regret (there are always more things to do, I would try to let go of that). I've never met anyone who, in their final days, regretted not working more. I've seen people regret not spending more time with people they care about, not developing their own talents, not experiencing (travel, food, cultures, etc.), and things left unsaid (apologies,admissions, etc.).
So I try to do my best at those things, as if living my final days. The first and last things are relatively easy -- don't leave things unsaid, and spend time with people you care about. I guess those are the biggest two I'd spend effort on. I'd perhaps write these things in letters, if it was more practical (although I would make sure they are kind letters -- if we leave behind something, why not kindness? All my bitterness can die with me.).
All that being said, an old friend of mine had similar symptoms as you, and it also took a long time to diagnose. Eventually they were diagnosed with idiopathic dystonia, received treatment, and mostly recovered (I'm not attempting a diagnosis here, only telling a story). The medical system can be slow and diagnosing the many things that can go wrong with our bodies is hard. As long as you're alive, and have not received a terminal diagnosis, a positive outcome remains possible.