this post was submitted on 02 Dec 2023
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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.

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[โ€“] Catsrules@lemmy.ml 6 points 1 year ago

That is a hard one, honestly as someone who has been health all of their life I don't think I can comprehend what your going though and can't put myself in your shoes.

Sorry this will be the most boring answer but personally I would spend my final days with my family and friends. I don't think it really matters what I do with them. We could go on a trip or say home and binge watch a TV show, go out to eat play video games whatever.

I do think I would continue to try and figure out what is wrong with me. I am naturally curious and want to try and fix things or at least figure out the cause. I would probably grab a Steam Deck and play some games at the hospital. Kill two birds one stone.