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 know you didn’t ask about things that could be wrong, but I just want to make sure you have tried everything before you give up. The US healthcare system (and most healthcare systems, really) are not good at diagnosis for uncommon things. You got something that 20% of the world has? They’ve got you. But if you have an oddly presenting issue, there isn’t really a Dr. House to figure it out.
So I want to make sure you’ve checked the things you can. By the way the lurching going to sleep thing isn’t super uncommon. I twitch dramatically when drifting off to sleep if I have something or someone snuggled up against me, or even if I am on a small couch and my feet touch the ends. Seems like a response to an unfamiliar potential danger the body reacts to.
Anyways, have you moved in the last few years? Maybe there is mold or a small gas leak.
Have you tried dramatically changing your diet? It’s possible you picked up some horrible GI bacteria that your immune system attacks its waste or something. You could try high dose probiotics too. Many people with unrelated seeming symptoms like brain fog see improvements, and it’s an area that is totally understudied.
Did these symptoms start with a covid infection? Long Covid is still very poorly understood and seems to range from post exertion tiredness, to brain fog, and other neurological disorders.
I assume they drew labs to make sure your blood wasn’t high or low in anything. If not, ask what labs they can draw.
I feel like it’s even possible your water supply could be contaminated by something, so maybe switch to bottled water for a bit if you have a suspicion your building you live in may have bad pipes.
I suspect I would die trying all of these things, but if not, and I knew the end was coming, I would seek out and spend as much time as I could doing what was important to me. Before, I would have said hiking the PCT. Now that I am married and have a child I would spend everything I had to make as memorable a trip as I could to spend my last days with them. I might even steal a page from Violet Evergarden and write letters to be delivered to my daughter through various years of her childhood, and of course love letters for my wife.
Ugh now I’m all sad thinking about this. Hope everything turns out okay for you. There’s always things to try. It’s not over till it’s over.