So, my question is, what would you want to do in your final days?

Honestly, that’s a good question that I don’t know the answer to.
I don’t know that I’d care doing anything super specific, but mostly that I’d want to spend at least some of that time with the people I love.
Not even as a goodbye, really.
There’s just something about connecting with people that is its own reward, for one more moment.

Maybe I’d like to watch the stars on a clear night, away from the big city lights?
Gazing at the light from a star from a billion years ago, there’s always been something calming to me about the sheer vastness of the universe. Our time here, almost a blip, but ever precious.

Know that whatever happens next, your story has touched me.

I really wish you the best.
Some people have survived unimaginable odds, and I hope you do too.

I remember reading a similar series of posts and comments on Reddit a few years ago and someone asked for the most beautiful music. People created a long comment chain of suggestions and someone compiled a playlist.

https://open.spotify.com/playlist/1FUbvTL8qQrxQ3veYhNJjH?si=W0Vcv3ZGRR-ZlXXF81fbxg&pi=u-X4vlOCRIQpax

I thought it was a fairly good listing of a variety of beautiful music of many genres … classical, pop, country, folk, etc

Only thing I would add to the list is opera especially with Luciano Pavarotti … especially Nessun Dorma

Also Andrea Bocelli with the song ‘Con te partirò’ or the English version ‘Time to say goodnight’

There’s many operatic songs I’ve heard over the years that are beautiful and I’ve tried to collect and study … But I’m just not a pro at it. I’ll try listing more later if anyone is interested.

It sounds like at one point you may not be able to do much except maybe stay in bed … at that point, I’d want to just be able to listen to music that I would enjoy or give me some kind of peace. While you are still well enough, create a playlist of music you like that can be played back for you … make it as big of a list as possible so as not to drive yourself nuts if someone ends up playing you the same five songs over and over.

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.

I would want to make sure I gave my company my all. They deserve my best work and I want to make sure the shareholders gain the most value for their investment.

Do anything that makes you happy. If you have seen Into the Wild, it says happiness is only true when shared. So if you can have time with important people in your life, I think that’s what matters. Once we are gone, we can still live in the minds of people.

Looking at this post, your last one, and some of your comments – is your iron low?

POTS, breathing issues, movement issues especially when sleeping, nervous system pain - there’s a ton of symptoms that can be associated with low iron and you check off a number of them.

And the numbers of what’s ‘normal’ are currently having their threshold lowered across various institutions. If you have a low serum ferritin, you might want to talk to a neurologist that’s open to the idea of some of your symptoms being caused by iron deficiency. It’s an easy fix (if you are low enough they can just jump you to IV iron).

Depending on how up to date your neurologists were, there may be a much simpler solution here than preparing for the end.

Given the normal test results, it may also have components of a functional neurological disorder, which is kind of where your brain gets used to abnormal behavior and extends it even if there’s not a separate mechanical issue going on. It’s not really treated seriously enough by most neurologists due to its history of being considered ‘faking’ neurological disorder even though that’s no longer how it’s seen by specialists and there really are mechanistic aspects to what’s going on.

The iron deficiency would be an easy fix that could be flying under the radar of legacy guidelines for deficiency. If there’s functional components, getting a referral to a functional neurologist would be important as the longer FND goes on the harder it is to treat.

I’m sorry you’re going through all this, but know that while it can feel hopeless, sometimes finding the right provider can make a world of difference, especially if what’s going on with you isn’t a cookie cutter situation.

I’m sorry to hear that. That’s some heavy shit that I won’t pretend to understand, but to answer your question: Nothing. I don’t mean that in a cynical way. Enjoy the “freedom” you’ve been given. The world is a tumultuous place right now, and there are days where I find myself indulging this nihilistic hope/fear that it will all just stop and I won’t need to worry about bills, work, maintaining relationships. Those aren’t necessarily bad things, but they become overwhelming when you look at everything else going on around them. All of that is to say that while I can’t relate to your situation, I understand the way you’ve said you’re processing it.

So enjoy the freedom to do nothing. Go sit in a park or on the beach or by a lake for hours. Or binge watch some great shows. Or power out some of your favorite old games. Or do none of these things! Through this fucked up turn of events, you’ve been given a small gift of absolute freedom (though I understand with the mobility issues that may be easier said than done)

Personally, I’d spend it doing the things I said above and with the people closest to me. You don’t need to spend energy or time finding new things to make you happy. Just focus on the things that you already know do.

As for the hospital/home question, it really depends on the condition. It sounds like the medical system has failed you, and I’m sorry to hear that, but you shouldn’t give up on a chance if there is one. When/if it gets to the point that you’ve been given a diagnosis and it’s just prolonging the inevitable, then it’s time to make that choice. Are 3 more months worth it if you’re confined to a hospital bed? Personally I wouldn’t think so, but again, I’m not in that position and can’t honestly say how I’d react if I were.

I hope you can get the help you need. This internet stranger is sending all the good vibes I can. Keep your head up, your loved ones close, and keep focusing on the good, as you’ve proven quite adept at doing already.

I can’t speak for you: for me, Spend my time at a Cliff side beach house, enjoying the naturez the border between land and sea. Have dinner parties, play games socialize as best I could.

Find comfort in meditation watching nature as best I could.

Being a do it yourself kind of person, I’d make sure I had a exit strategy setup, so I could meet the next step on my own terms.

I would take a different drug every day, starting from the softer to the hardest. And the last day make a great party with all my family and friends say goodbye, I love you all, and then go to my room and take a final dose of fentanyl.

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.

I recommend LSD or Mushrooms. Meditation. Old school zen poems on death. Every day we all practice dying, anyone reading this could die today, nothing is certain.

Everything is impermanent Human suffering is caused by desire

So it goes

Have you tried magic mushrooms? I’m on no way saying that it’s a cure-all, but a good friend of mine has cluster headaches (also called suicide headaches) seasonally, and before she had to take an extremely pricey drug, that did only help shortly, but now she self medicated with magic mushrooms and the headachee are either gone or the symptoms have receeded massively. She just takes a little bit, as she doesn’t like the psychedelic effects. Maybe it could help you too :)

Your name will echo through time just as heros do. You offer kindness in an unkind world. I admire your strength. I would leave a poem. It’s art. A goofy group painting with loved ones helping. Then spend time watching nature. Encourage the helpers. Pass stories around the dying fire of my life as it’s reduced to smouldering embers floating into the night.

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.

i would show up in a country with universal healthcare and ask for help.