Hey Lemmy,
Long story short, I got unlucky. At age 18, I got one of those nasty neurodegenerative diseases that slowly deteriorates the body's nervous system. Now at age 21, after ravaging my vision, bladder control, balance, memory, heart rate, cognition, and sense of touch, it is now taking over my breathing. My breathing simply doesn't work during sleep anymore. It slows down and stops entirely before restarting again. I read that this is likely because the disease finally reached the part of the brainstem that controls breathing, and that if it gets worse, it may be fatal. It would appear that I'm hanging on at 1 HP, and the next attack could be the one that does me in. It's getting uncomfortable knowing that every day is another roll of the dice, because I don't think mine have many sides left.
I want people to know that life was the greatest fucking thing to ever happen to me. I loved it all, even the parts that sucked, just because I got to take it all in. The highs of joy, the lows of sadness, the good, the bad. People will say "Too bad he never got to live a full life," but I say FUCK that! This was fucking incredible! This IS a full life because it's the one I got, and just the chance to experience this universe is so unbelievably goddamn beautiful. You think I'm going to complain when we are basically supercomputers, made up of incomprehensibly complicated microstructures, and we have the technology to experience the richest and most creative worlds other humans have to offer ON TOP of that?? HELL NO! From my perspective, there was nothing, and then there was the most beautiful, intricate, and awe-inspiring light show - incomprehensibly detailed, amazing, and endless. Whoever gave that to me, I just want to say that I fucking love you. Whether it's God, the creator of the simulation, the Flying Spaghetti Monster, or mathematical soup, there is no string of words in the English language to describe how grateful I am. How the FUCK did this happen?
I've been writing a lot recently in a note-taking app called Obsidian. I'm using it to record my thoughts about life and the person I was, because I want to share who I was with my family and the world. See, I was always sort of the black sheep in my family. I often kept to myself because I didn't always have the best relationship with them. That was all well and good... until now. I realized that once I die, the essence of my personality will instantly be gone, and my family will only remember the boring, inoffensive outer shell that I presented. But I want them to know the real me, even if I think totally differently than them and even if some differences upset them, because at least then they will know what my actual, genuine feelings were. Because I had a whole lot of them.
I also wanted to share them with my Internet friends and the hundreds of people in my community who enjoy my projects. I think it would be really cool if people could browse my thoughts like a wiki (save for a few personal pages for just my family). Perhaps I could use something like Quartz for the site generation and GitHub Pages for hosting? I'd prefer if it didn't incur cost. As for the notes for my family, I guess I could put them on a USB stick? The only problem is that it could decay or there could be a house fire or something like that.
One thing I'm a bit worried about is the idea that damage in specific parts of my brain could suddenly alter my personality or give me delusions that cause me to delete or remove everything out of some insanity that I can't comprehend. I feel like I have to physically give my family a copy for them to hide from me in case I become a zombie. But then, what if I want to write more notes for them? Maybe I can have it published to the cloud somewhere and they periodically download it?
I wanted to pose the question here, because I think others might have better ideas than what I'm thinking of right now. I'd prefer something I could do in one day, since I really want to avoid risking more days without this. I just want to write and ideally be able to sync everything pretty quickly. My thoughts will never be complete, but I'll have much more peace of mind knowing that people will at least see what I have written so far.
Have your neurologists agreed with your estimate of impending doom, or is this a conclusion you have come to on your own?
Disturbance in sleep breathing such as you are describing could be as simple as sleep apnea which is fixable.
In your previous post it seemed like the way you discussed your relationship with neurology was that the institution failed you and that you had come to your own conclusions regarding your issues being the brain stem, and mentioning new symptoms of breathing issues as being why you thought your time was limited but not indicating this was feedback you were getting from your doctors.
My concern is that the language you are using in describing your situation has progressed over the past month to the point you are now describing your fears about further progression as a top concern in combination with your fatalism around the ultimate outcome of what you have going on, even desiring a way to leave a lasting mark in only one day from now, which seems very alarming in that you might try to take matters into your own hands.
That may end up killing you quite unnecessarily when your issues, particularly the latest symptom, may not be as intractable as you think.
You'd mentioned before that the tests performed by the neurologists all came back as normal. This disconnect between symptoms and tests isn't uncommon, and you might want to look into finding a neurologist that specializes in functional disorders - if that's what is going on it can be treatable but the longer it goes on without treatment the more difficult it is to treat.
In any case, you absolutely should not be self-determining prognosis without it coming from a medical professional, and should never take matters into your own hands based on a self-determined prognosis. If your doctors have only given you a short time to live, so be it - but I get a strong sense given the progression of what you've said in your posts to date that this isn't the case and you may be in life-threatening danger from your brain, but not in the way you think.
TL;DR: Do your neurologists agree that your recent breathing issues mean you are likely to die soon?