KuriGohan&Kamehameha
想死不能 - 想活不能
- Nov 23, 2020
- 1,740
I have had multiple people tell me over the course of several years tell me that I should continue to live even if I can never have any of the components which I deem necessary for having a happy and fulfilled life. Time and time again, I've been told to compromise any modicum of happiness, simply to endure a listless existence. I believe that's a deeply unfair trade off, for so little reward.
One of the things I enjoyed about life, as a child, was reading. I used to be hyperlexic, learning to read at a very age before most children do- probably because of my autism- and was very engrossed in literature. I could read multiple books a week, and would spend all my free time reading. Now, I can barely read a paragraph without having to re-read it several times to glean any sort of understanding or comprehension, and I never remember anything.
Gaining knowledge was something dear to my heart for most of my life, but now I am too sick and stupid to accomplish any of the goals or career paths that I wanted to embark on. I tried for many years to learn programming and software development, and was ultimately rubbish about it. I will be graduating with a degree that is basically useless without further postgraduate study, and have barely scraped by because I cannot handle the rigor of it.
I truly loved and enjoyed science, discovering new things, but my incompetency becomes a liability. As my chronic illnesses have progressed and went on for years, I am unreliable and cannot hold full time work. My attention span, concentration, and memory are completely shot. My ability to learn new information is shot. I am permanently fatigued mentally and often physically, as no matter how hard I try, my legs don't get stronger and are permanently weak, heavy, and numb. I wake up every morning never feeling rested, with sore, tingling legs. It never ends. Even when I am not in pain, I am permanently uncomfortable.
For my degenerating spine, I will have to wait 2 years for a pain management referal, and doctors won't do shit for me when the pain gets bad. They told me to take Iduprofen, even though I have a massive amount of scar tissue in my abdomen from surgery, and shouldn't be taking NSAID medications. I have a permanently pinging nerve that runs down my spine to my toe, and it is the most annoying thing ever. Yet, I'm told to just get the hell over it.
In spite of me trying over 20 medications and so many different things to try and fix my life and my health problems, nothing ever gets better. Multiple people have told me to just cope, and accept that I will have to live a very limited life, but I refuse to accept this. The people around me want me to get a stressful and isolating work from home job, be happy with not being able to have hobbies, be happy with having no family or a fulfilling romantic relationship, and basically skimping on anything that would make life remotely tolerable.
I worked very hard for many years to escape low wage, high stress jobs, because I wanted to work in science and academia and escape my cage. I physically hurt myself by working manual labour jobs while I was sick, just tying to survive. I wanted to actually carve out the path I wanted for myself. Now, everyone tells me to go back to the cage, and be happy with no satisfaction or freedom.
People seem to act like I could actually do x or y, and it is simply low self esteem that leads me to believe these things, but this is absolutely not true. Would "low self esteem" make my legs permanently numb, or my vision permanently blurry, or my memory complete rubbish to the point where my IQ score dropped over 30 points? The aphantasia that I was born with? I'm sick of hearing this nonsense from people who have never had neurocognitive problems and want to gaslight you into thinking your illness is a figment of your imagination.
I've been sick for over 6 years now.. I'm almost 24 years old, and have had to watch my life slip away like sand ticking away in an hourglass. At this point, I know my chronic fatigue isn't getting any better. Other people know this too, but they either ignore this reality or dismiss it entirely and pretend my problems are fake. After a life time of being traumatised over and over again, watching multiple family members die until I have no one, abusive relationships, losing friends and opportunities, I am sick as hell of this misery.
I understand that some people can be happy with the simple pleasures in life like the serenity of being in nature or hearing a bird chirping, or a nice cup of coffee. But if I have to live the rest of my life with illness, no family, no ability to succeed in hobbies or a career, no talents, no close friends, and no romantic connection, WHAT IS THE Point? To me, life as a basal state of being is not valuable, it is the things that bring one joy and meaning that can make life valuable and worthwhile, and I've consistently been deprived of those resources.
I can't wait to be out of here.
One of the things I enjoyed about life, as a child, was reading. I used to be hyperlexic, learning to read at a very age before most children do- probably because of my autism- and was very engrossed in literature. I could read multiple books a week, and would spend all my free time reading. Now, I can barely read a paragraph without having to re-read it several times to glean any sort of understanding or comprehension, and I never remember anything.
Gaining knowledge was something dear to my heart for most of my life, but now I am too sick and stupid to accomplish any of the goals or career paths that I wanted to embark on. I tried for many years to learn programming and software development, and was ultimately rubbish about it. I will be graduating with a degree that is basically useless without further postgraduate study, and have barely scraped by because I cannot handle the rigor of it.
I truly loved and enjoyed science, discovering new things, but my incompetency becomes a liability. As my chronic illnesses have progressed and went on for years, I am unreliable and cannot hold full time work. My attention span, concentration, and memory are completely shot. My ability to learn new information is shot. I am permanently fatigued mentally and often physically, as no matter how hard I try, my legs don't get stronger and are permanently weak, heavy, and numb. I wake up every morning never feeling rested, with sore, tingling legs. It never ends. Even when I am not in pain, I am permanently uncomfortable.
For my degenerating spine, I will have to wait 2 years for a pain management referal, and doctors won't do shit for me when the pain gets bad. They told me to take Iduprofen, even though I have a massive amount of scar tissue in my abdomen from surgery, and shouldn't be taking NSAID medications. I have a permanently pinging nerve that runs down my spine to my toe, and it is the most annoying thing ever. Yet, I'm told to just get the hell over it.
In spite of me trying over 20 medications and so many different things to try and fix my life and my health problems, nothing ever gets better. Multiple people have told me to just cope, and accept that I will have to live a very limited life, but I refuse to accept this. The people around me want me to get a stressful and isolating work from home job, be happy with not being able to have hobbies, be happy with having no family or a fulfilling romantic relationship, and basically skimping on anything that would make life remotely tolerable.
I worked very hard for many years to escape low wage, high stress jobs, because I wanted to work in science and academia and escape my cage. I physically hurt myself by working manual labour jobs while I was sick, just tying to survive. I wanted to actually carve out the path I wanted for myself. Now, everyone tells me to go back to the cage, and be happy with no satisfaction or freedom.
People seem to act like I could actually do x or y, and it is simply low self esteem that leads me to believe these things, but this is absolutely not true. Would "low self esteem" make my legs permanently numb, or my vision permanently blurry, or my memory complete rubbish to the point where my IQ score dropped over 30 points? The aphantasia that I was born with? I'm sick of hearing this nonsense from people who have never had neurocognitive problems and want to gaslight you into thinking your illness is a figment of your imagination.
I've been sick for over 6 years now.. I'm almost 24 years old, and have had to watch my life slip away like sand ticking away in an hourglass. At this point, I know my chronic fatigue isn't getting any better. Other people know this too, but they either ignore this reality or dismiss it entirely and pretend my problems are fake. After a life time of being traumatised over and over again, watching multiple family members die until I have no one, abusive relationships, losing friends and opportunities, I am sick as hell of this misery.
I understand that some people can be happy with the simple pleasures in life like the serenity of being in nature or hearing a bird chirping, or a nice cup of coffee. But if I have to live the rest of my life with illness, no family, no ability to succeed in hobbies or a career, no talents, no close friends, and no romantic connection, WHAT IS THE Point? To me, life as a basal state of being is not valuable, it is the things that bring one joy and meaning that can make life valuable and worthwhile, and I've consistently been deprived of those resources.
I can't wait to be out of here.
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