I’m sorry if this post is a bit too long or emotional, but I would really appreciate if someone read it and told me their thoughts. I feel very isolated in my experiences, and I would really appreciate being heard....
I’m a man, though I suspect my young age and anxiety led to people labeling me as “just another teenager with health anxiety,” which undermined my position, despite how impossibly difficult it was to remain stoic.
As for my parents, that’s generally because I have toxic relationships with them and they are extremely hesitant to consider anything I think and believe. For example, despite my vehement disagreement, they told me that if I got vaccinated for COVID, they would kick me out onto the streets even though I had no financial footing and was struggling with my condition. Having no car or daily routine that would make it feasible for me to get vaccinated behind their backs, I eventually contracted the Delta variant and was forced to endure the full infection. I now have chronic cough.
Thanks for the suggestion, but unfortunately no, I don’t have local friends. My POTS makes it hard for me to be out and about for long periods of time (I get lightheadedness and brain fog after just a few minutes of standing).
I try to be the best friend I can be to myself and live life in the moment. I tell myself that how proud I am of myself and that it’s okay to be scared or sad. When nobody else will tell me these things and when I feel so dehumanized and isolated, I try to treat myself with warmth and compassion where none exists.
I feel grateful that I had the chance to experience life at all. I got to experience so many amazing things - incredible video games, a fulfilling programming hobby, and the cutest of cat pictures. I always wanted to live my life building cool and interesting projects, and I’ve already built a website that well over 100,000 people used, solved problems that nobody else had before, and got my work featured in several videos on YouTube by people I considered celebrities. I shouldn’t be ashamed if a health problem I can’t control cuts my life short, because I did the best I could and kicked major ass while doing so.
I think of the YouTube creators I really enjoyed whose lives were tragically cut short in their 20s. Talented, entertaining, and charismatic individuals who continued their passions and shined brightly until the very end. I think the most humane existence I can give myself, for however much time I have left, is to keep doing what I love too, for as long as I still can.
I’m not giving up, but I’ve also been making peace with death in the process.
All of my symptoms seem to be traceable back to one hypothesis: the brainstem, where the majority of nerve signals from the body converge, has been compromised. Progressive damage is causing it to send incorrect signals, resulting in random pain and symptoms over nearly every surface and system in my entire body, as well as the gradual breakdown of my autonomic systems, such as unconscious breathing and regulating bloodflow when standing. Unfortunately, every new symptom that happens only reinforces this theory, with many of the explanations for them being brainstem or cranial nerve damage. Sufficient damage to the brainstem is known to result in death, and brain damage itself isn’t directly fixable. All of this has led me to believe that this has a fairly high chance of being terminal with no medical recourse. Not 100%, but high enough that I cannot ignore it. The writing is on the wall.
Instead of pretending everything is going to be okay, I have chosen to accept this possibility and enjoy the time I have remaining. I can’t control when I die, but I can control how I react to it, and I want my final days to be peaceful and nostalgic, rather than horrifying and distressing. And hey, if I survive for longer than expected, I’ll take it.
Society has already failed me. Capitalism made me push through the pain that led to my injury, and the medical system gave me the middle finger. I was one of the few young people who slipped through the cracks. It’s very sad, but it happens. I hope that after I’m gone, people continue to push for a better world and develop the technology to finally diagnose and rectify damage to individual neurons, so nobody will ever have to experience what I went through, and go on to live happy and healthy lives.
I noticed that a lot of the posts on Lemmy are news, memes, and interesting discussions. I like the regular flow of content we have, and I find a lot of it engaging....
u/totallynormaluser: “I’m sorry, but as an AI language model, I don’t have personal preferences or emotions, so I don’t have the ability to have a favorite video game.”
It feels like people are a lot nicer here than on Twitter and Reddit, and even when people disagree, it’s generally civil and not an all-out flame war. Also, there’s no algorithm promoting outrage all the time....
I assumed just German memes but I was always afraid to ask on Reddit. Is there a specific style of humor, or jokes about things only Germans would understand?...
My guilty pleasure when browsing the “All” tab is putting these posts into a translator to read them. Since I don’t know German, it feels like I’m viewing content that I’m not allowed to see lol
How would you spend your final days on Earth?
Hey Lemmy,...
autoimmunity rule (sh.itjust.works)
How do you advocate for yourself when you have very strange (and possibly dangerous) health problems?
I’m sorry if this post is a bit too long or emotional, but I would really appreciate if someone read it and told me their thoughts. I feel very isolated in my experiences, and I would really appreciate being heard....
Is Lemmy a good place to share personal projects and art?
I noticed that a lot of the posts on Lemmy are news, memes, and interesting discussions. I like the regular flow of content we have, and I find a lot of it engaging....
Whoops! (lemmy.ml)
"Sir, this is a Wendy's" logo (sh.itjust.works)
Source: Dall-E 3...
She loves to help breakdown boxes! (i.imgur.com)
Free service rule (sh.itjust.works)
Key moments rule (sh.itjust.works)
House centipedes are pure evil (sh.itjust.works)
I introduce: Tiger, basking in the sun (lemmy.bleh.au)
She has come so far, especially in the last three years. She’s gone from being really aggressive, to incredibly placid and loving ❤️
BotDefense is leaving Reddit (arstechnica.com)
Title says it all. If you think Reddit’s been trending down lately, just wait.
It's so much easier to comment on Lemmy because it isn't a toxic cesspool waiting to tear you apart
It feels like people are a lot nicer here than on Twitter and Reddit, and even when people disagree, it’s generally civil and not an all-out flame war. Also, there’s no algorithm promoting outrage all the time....
Lemmy Just Reached 1 Million Posts (lemmy.world)
Lemmy just reached a new milestone: 1 million posts, across 1,323 servers....
zucc rule (sh.itjust.works)
So, I guess Threads is officially spyware... Not at all shocked, but, Jesus that's a lot of data they're wanting. (media.kbin.social)
defederating from meta rules (sh.itjust.works)
what is ich🙃iel? German
I assumed just German memes but I was always afraid to ask on Reddit. Is there a specific style of humor, or jokes about things only Germans would understand?...
lemmy rule (sh.itjust.works)
I swear it's impossible (sh.itjust.works)
No matter who you are, thanks for being here.
It really feels like Lemmy is alive because of you....
Electric rule (sh.itjust.works)