KuriGohan&Kamehameha

KuriGohan&Kamehameha

想死不能 - 想活不能
Nov 23, 2020
1,692
Then what is the point of trudging on?

Health, love, contentment, passion, aspiration, learning skills, refining a craft, creativity, companionship, and curiosity are all core tenants of what makes life worth living, I believe.

There are people who exist with no love, yet their health remains intact. Likewise, a man can experience great love, whilst being in horrible health. If you have some of these motivations for living, it becomes easier to cope with the absence of the other keystones.

When you've lost all of these, it's hard to see a justification for continuing on with life. Often times, I am told my suffering isn't valid because I'm young, and there's a slim chance things may improve in a decade or so, when I've reached my 30s.

I've had to sit here and watch so many prospects be pissed away due to my illnesses and my lack of proper childrearing and familial support. While other people my age are out making memories, settling with partners or engaging in fun hookups, traveling, playing sport, chasing a dream career, I spent most of my time running on empty as a consequence of incurable diseases.

It really is no way to live. If I had a family that loved and cared for me, perhaps I could carry on, but proper support is seen as a frivolous accessory unless you've deterioriated towards the point of being trapped in a bed full of piss or reaching destitution levels of starvation, a scenario in which an institution will be held culpable for abandonment.

Like most people, I had dreams, but they were crushed as soon as I became sick and realized the world has 0 pity for people with invisible or misunderstood conditions. Today, in fact, some regular bloke was mouthing off on BBC Ulster radio about how CFS is a yuppie flu, basically treating it like a nothingburger made up delusion invented by "le heckin lazy milleneals who don't wanna work xx"

Every day of my life, I have to watch the authorities (who dictate the rules and influence public opinion) spit in the face of real world data and pretend illnesses like mine don't exist. I have to keep fumbling on with education despite massive gaps in my attendance and clear failures on my end to keep up with a schedule. I have to accept the reality that eventually I won't be invited to any social events because my health has lead to me having to say no one too many times. I have to wear the mask of a functioning member of society who isn't visibly ill, to not lose my livelihood.

When you are sick, infirm, and emfeebled in any way, life is not kind to you. While it would be nice if there was tangible support for those in my position, that's wistful thinking. I don't see anyone campaigning for systemic reform outside of this outlet, all anyone does is say we need better access to mental health services and people won't be suicidal anymore, regardless of whether or not your issue stems from a mental illness or not.

Every year, benefits are cut for those who rely on them, therapy is purported as a viable alternative to socialisation, and "mental health" charities rake in immense donations and profits which go towards newsletter bulletins, useless apps, and mindfulness social media posts. Newsflash, no amount of "cheer up" rhetoric is going to make my life worth living.

Until you have spend your late teens and your early 20s having to watch everything you love slip away, unable to be an active participant in the world, you can't understand it. Yet, every resource out there on the clearnet proclaims with utmost certainty that you must have something that makes life worth living, otherwide you're mentally ill.

Having no family, hardly any friends, no societal incumbent dedicated towards me not starving or ending up homeless as a consequence of my impairments, no talents, no future, a body that's been busted all to smithereens by the wear and tear of scuffed genetics, years of abuse, neglect, and the good old nit and grit hard work ethic that optimists love to praise so much - yes, there is so much to live for in these conditions!

Learning new things, having a goal to achieve, or finding people to enjoy things with- as simplistic as these desires are- were my reasons for existing. I have always been very passionate about science, and even when I had to drop out of university the first time, I didn't give up pursuing that path. Little did I realize that reality is far from the sophistication of high earnings, sleek, high tech facilities, and a culture of genuine curiosity that the media portrays this sector as.

Not to mention, many of the things I study are chilling and heartbreaking. The knowledge feels like a forbidden fruit, much like consciousness and self awareness is, at it's very core, something that should be off limits to the confines of the human mind. What I have learned, in my studies of the brain, is that there is a vast array of health conditions, malignancies, and disorders that are simply incurable as they have resulted from permanent damage and misfiring of the nervous system's immune cell functioning. At most, perhaps we will see preventative measures, but if you have a neuronal affliction in this day and age, you might as well be a medieval peasant suffering from a bacterial infection in an era where the advent of antibiotics couldn't even be conceived.

People like me, dont cut it in science. However, I have invested everything into getting a degree, as my body could not handle hard labor any longer. I didn't realize that PhD candidates are forced to live on poverty level stipends, and work themselves down to the bone, for no recognition, no reward, and no respite from the publish or perish culture. Yesterday, I was told by a gleeful staff member that the future is so exciting for all of the students in my cohort. Sure, she had to do unpaid lab labour for months upon months while working another job, but it was worth it in the end to become an academic.

A person like me, who struggles to get out of bed, who suffers daily from constipation and pain, whose brainfog places stopgaps on socialising, mingling, and engaging in constant activity.. simply cannot survive in this cutthroat environment. Did you know, I had to send over 50 email enquiries just to get ONE professor to sponsor me to even apply for a job? Not selected for the position mind you, simply for the privledge of moving onto the application stage.

I can't even keep up with a low intensity part time job. How will I ever work at the pace of your average person? Yet, the powers that be demand it. I'm not allowed to die, but I'm not allowed to slip up and fail to produce labour for a world that's squeezed me dry. Perhaps all of this could be worth it, if it were true what my tutor and others said about university being a magical time where one forms lasting friendships and has barrels of fun.

Every day I have to live with the knowledge that life is slipping away from me and I cant engage with things that give life meaning and purpose. I'm not going to parties, traveling multiple times a year, making friends, learning skills, and having a life worth living. Seeing photos of people my age out with their friends, sight seeing, having chill nights out, making conversations, hurts and burns me to the core in such a visceral way that I cannot articulate.

I seriously don't know how people can say to me in good faith that it will get better when it is a fsct intrinsic to biology that one's health only declined with age. With time, my autistic traits have also become more pronounced which has lead to further ostracisation because autistic adults might as well be cannon fodder in the eyes of "healthcare heroes" who stop giving a damn the day after a child turns 18.
 
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Nightmare Painting

Student
Dec 16, 2021
121
I agree with everything you said and I frankly don't have anything useful to add. I've been disabled my entire life while people have just expected me to be functional because my disabilities are invisible to them so I understand where you're coming from. The world is indifferent to people who are disadvantaged and all the so called "help" only comes in the form of empty words or cruelty.
 
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FuneralCry

FuneralCry

Just wanting some peace
Sep 24, 2020
37,951
Your feelings are understandable. Health problems can be very awful and can torture people. I know that it is hard to carry on when you are suffering so much. I find it horrible that so much pain exists in this world, there is so much pain that is being experienced. I'm sorry you have to go through all this. Many people seem to be disadvantaged through no fault of their own. I wish you the best in whatever happens.
 
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whatevs

whatevs

Mining for copium in the weirdest places.
Jan 15, 2022
2,914
At least you have your verbal acuity going for you. Ain't that something. I could tell that you were autistic (like me) from paragraph one.

So what are your health problems, specifically speaking?
 
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jimmy7754

jimmy7754

I just want to be myself again
Dec 15, 2021
508
I don't want to do this anymore and I can relate.
 
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KuriGohan&Kamehameha

KuriGohan&Kamehameha

想死不能 - 想活不能
Nov 23, 2020
1,692
At least you have your verbal acuity going for you. Ain't that something. I could tell that you were autistic (like me) from paragraph one.

So what are your health problems, specifically speaking?
Autists seem to always attract each other, we can sniff each other out. It's like the spidey sense.

I've got cfs/me (chronic fatigue syndrome, neuropathic chronic pain, raynaud's phenomenon, headaches, ptsd, IBS that leaves me pretty much permanently constipated, and neurological issues (I assume stemming from cfs) that cause me to have extremely blurry vision, brainfog, vertigo, and a host of other unexplainable phenomenon, like feeling as if my head will explode every time I bend over. Being me is no fun, yet there are so many out there suffering from far worse fates, so I feel as if I can't really complain.
 
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LastFlowers

LastFlowers

the haru that can read
Apr 27, 2019
2,170
I agree with everything you said and I frankly don't have anything useful to add. I've been disabled my entire life while people have just expected me to be functional because my disabilities are invisible to them so I understand where you're coming from. The world is indifferent to people who are disadvantaged and all the so called "help" only comes in the form of empty words or cruelty.
I have both visible detriments and invisible discomfort and excruciating pain, nobody gives enough of a damn about either.
Especially if it upsets their world view or inconveniences them.
(They also both feed into and compound one another.)
If something is not publicly accepted as fact or if people have a motive in denying it as such, then those who suffer will never receive the proper care, attention, research, treatment, dedication, empathy, you name it.

People are usually a little more understanding when the suffering is of a physical pain nature (because everyone understands physical pain in some regard), but that understanding only lasts so long, and if you have a condition like OP's or a disability such as your own, where the complexities and consequences are less understood, less apparent/conspicuous and/or with possible stigmas to boot (no thanks to actual malingerers who misrepresent them and cause the true sufferers grief), then it's going to be a long and arduous road ahead in being heard and helped (truly helped, not another person's forceful and inaccurate definition of "help").

Being your one and only advocate in the world is exhausting and defeating, even when you know you're right and fully acknowledge your own suffering.
We are often not enough for ourselves and we don't have the means or tools-alone-to help ourselves, we are at the mercy of other people..so if they don't care, then we die.
We die on our feet and we die in our beds, the walking dead or the deceased beneath the earth.
Apathy expedites our demise.

You are absolutely right in that the world is ultimately indifferent to those who are disadvantaged, people become easily frustrated and don't have much stamina when it comes to caring about anyone other than themselves.

Very sorry for your predicament as well as OP's (well-put together post and thoughtful points as usual).
Autists seem to always attract each other, we can sniff each other out. It's like the spidey sense.

I've got cfs/me (chronic fatigue syndrome, neuropathic chronic pain, raynaud's phenomenon, headaches, ptsd, IBS that leaves me pretty much permanently constipated, and neurological issues (I assume stemming from cfs) that cause me to have extremely blurry vision, brainfog, vertigo, and a host of other unexplainable phenomenon, like feeling as if my head will explode every time I bend over. Being me is no fun, yet there are so many out there suffering from far worse fates, so I feel as if I can't really complain.
Has any medical professional been able to link any of these to an autoimmune disorder? (Even though I realize some may very well be stand-alone issues, and doctors can be extremely dismissive.)
Or is CFS considered an autoimmune related syndrome in and of itself?

I only ask because I also have Raynaud's phenomenon and I'm currently trying to figure out if it is the solitary "benign" type or perhaps indicative of a larger concern (which could help determine at least one possible reason as to why certain issues of mine have not resolved, although others would never be explained by autoimmune disorders anyhow unfortunately).
It's very tiring though, because when initial problems aren't resolved, everything builds up and becomes a giant pile of god knows what from god knows where.
(Not that he exists!)
I'm sure you know that burden well.

You may have already answered as much in other posts but my short term memory is failing me, sorry if I'm asking the obvious (like when someone tells a person with severe acne to wash their face or asks if they've seen a dermatologist..ugh, I don't mean to be that type of annoying lol).
 
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raghu1977

Nerd
Jan 29, 2022
121
I can't help or advice you on most of your issues. But for the constipation -
1. Drink lots of water. Even when you don't feel like it - make sure you drink at least 4 liters every day
2. Eat 2 bananas every day. Throw in other fruits and leafy veggies, but make sure you eat 2 bananas.
3. Take fiber supplements with water every night before you go to bed. Anything otc. Walgreens has an orange flavored, water soluble powder.

And in the morning drink a warm fluid. Warm milk, coffee etc.

These have really helped me a lot.
 
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LastFlowers

LastFlowers

the haru that can read
Apr 27, 2019
2,170
I can't help or advice you on most of your issues. But for the constipation -
1. Drink lots of water. Even when you don't feel like it - make sure you drink at least 4 liters every day
2. Eat 2 bananas every day. Throw in other fruits and leafy veggies, but make sure you eat 2 bananas.
3. Take fiber supplements with water every night before you go to bed. Anything otc. Walgreens has an orange flavored, water soluble powder.

And in the morning drink a warm fluid. Warm milk, coffee etc.

These have really helped me a lot.
Do you know the cause of yours?
If you don't mind my asking.

I think sometimes the usual remedies for such a thing may not work when there is an underlying condition or something else severely amiss with the body.
(Also certain foods and supplements can cause an upset if there are other factors in the mix, what may help one problem, might agitate another.)
But I don't want to speak for OP, maybe this could be helpful regardless.
And it's nice of you to offer your regimen.
 
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GentleJerk

GentleJerk

Carrot juice pimp.
Dec 14, 2021
1,372
I love reading your posts, you seem to have quite a way with words, and I always deeply resonate with every point and insight that you bring up. When you offer so much dialogue and dive thoroughly into each aspect of what you are talking about, voicing all the implications and describing the crux of the matters so well, I usually feel compelled to go through each paragraph and give a detailed response to every section. But you understand the subjects you are talking about to such a degree and explore them so well, and articulate them with so much clarity, that all I can really offer is understanding and 100% complete agreement on every level.

The words you write just need to be read. Not only by people on this site, but by as large an audience as possible imo. I feel like you are speaking for me, and a lot of others too. I'm sure there are many people aside from myself who share similar experiences or deeply resonate with what you say, not just in this post but in many others, but they might unfortunately lack the energy or ability to describe everything as excellently as you do- particularly in the ME/CFS community.

I hope that as many people as possible can read what you write. I don't know anything about publishing books or blogs, but It would be a crying shame if your words ever fade from view.
 
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_Seeking

_Seeking

I'm only here for this moment
Dec 16, 2021
205
I have a lot of your same medical conditions (though it didn't really hit me until my late 20's) and you put it all so eloquently. I am so sorry for all that you are dealing with, life is so unfair and I'll never make any sense of it.
 
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GentleJerk

GentleJerk

Carrot juice pimp.
Dec 14, 2021
1,372
.

*I should add, this is just a recent experience I had- I'm suffering from an illness that has auto-immune like symptoms, and one of the more recent problems I started having was constipation, not the normal hard-to-pass type, but a complete lack of motility. The intestines basically just suddenly stopped working. I even stopped eating because of it. After 2 weeks of no movements, doctors being of no help, I ended up in hospital from pain, where they told me that unless I have a bowel rupture and start dying from sepsis, there is nothing they would do, and just keep eating and taking even more laxatives and hope for the best.

I have a patch of skin on my hand that looks like it has been burned by fire, its been there for over a year slowly getting worse. A dermatologist said I have 'touched something' and gave me steroids which did not fix the problem and ultimately came back with a vengeance, so there is apparently nothing that can be done about it. Well, I tried rubbing some virgin coconut oil on it- and to my surprise it helps way more than the steroids. I have started rubbing coconut oil on it every day over the last few months and slowly, but surely, it is healing and has almost visibly disappeared.

Around the start of January I had the thought, what if it is possible something similar is happening internally? That might explain the worsening GI symptoms. So i started eating a teaspoon or so of virgin coconut oil 2-3 times a day. And increased the dose of a combination of laxatives. Amazingly, I have slowly been able to regain function and for the last couple of weeks, things almost move normally and I have been able to stop taking the laxatives. It hasnt cured any other symptoms, but I'm going to the toilet again at least once a day. At the moment I take the coconut oil by mixing it with peanut butter. It seems to be protective, helps heal both internally and externally.

I also discovered that prune juice from the long life juice aisle, is equally or more effective than the stimulant type laxatives including Senna based meds that I was taking. So I make sure to drink at least a cup or two of prune juice every day now.

I don't particularly like it when I get random advice from people about how to help with health problems, so please don't be offended. But if you decide to try virgin coconut oil + prune juice and it helps that would be great. I just wanted to share what I've experienced. And what raghu1977 said about drinking plenty of water is also very true, when I found out that I need to drink a minimum of 2L per day, I started filling up 2 x 1L bottles each day and trying to finish them- when I had the amount measured, I was shocked to find that unless I force myself to drink, I naturally consume less than 1L some days.

Best wishes,
 
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Nina1

Member
Feb 8, 2022
60
Then what is the point of trudging on?

Health, love, contentment, passion, aspiration, learning skills, refining a craft, creativity, companionship, and curiosity are all core tenants of what makes life worth living, I believe.

There are people who exist with no love, yet their health remains intact. Likewise, a man can experience great love, whilst being in horrible health. If you have some of these motivations for living, it becomes easier to cope with the absence of the other keystones.

When you've lost all of these, it's hard to see a justification for continuing on with life. Often times, I am told my suffering isn't valid because I'm young, and there's a slim chance things may improve in a decade or so, when I've reached my 30s.

I've had to sit here and watch so many prospects be pissed away due to my illnesses and my lack of proper childrearing and familial support. While other people my age are out making memories, settling with partners or engaging in fun hookups, traveling, playing sport, chasing a dream career, I spent most of my time running on empty as a consequence of incurable diseases.

It really is no way to live. If I had a family that loved and cared for me, perhaps I could carry on, but proper support is seen as a frivolous accessory unless you've deterioriated towards the point of being trapped in a bed full of piss or reaching destitution levels of starvation, a scenario in which an institution will be held culpable for abandonment.

Like most people, I had dreams, but they were crushed as soon as I became sick and realized the world has 0 pity for people with invisible or misunderstood conditions. Today, in fact, some regular bloke was mouthing off on BBC Ulster radio about how CFS is a yuppie flu, basically treating it like a nothingburger made up delusion invented by "le heckin lazy milleneals who don't wanna work xx"

Every day of my life, I have to watch the authorities (who dictate the rules and influence public opinion) spit in the face of real world data and pretend illnesses like mine don't exist. I have to keep fumbling on with education despite massive gaps in my attendance and clear failures on my end to keep up with a schedule. I have to accept the reality that eventually I won't be invited to any social events because my health has lead to me having to say no one too many times. I have to wear the mask of a functioning member of society who isn't visibly ill, to not lose my livelihood.

When you are sick, infirm, and emfeebled in any way, life is not kind to you. While it would be nice if there was tangible support for those in my position, that's wistful thinking. I don't see anyone campaigning for systemic reform outside of this outlet, all anyone does is say we need better access to mental health services and people won't be suicidal anymore, regardless of whether or not your issue stems from a mental illness or not.

Every year, benefits are cut for those who rely on them, therapy is purported as a viable alternative to socialisation, and "mental health" charities rake in immense donations and profits which go towards newsletter bulletins, useless apps, and mindfulness social media posts. Newsflash, no amount of "cheer up" rhetoric is going to make my life worth living.

Until you have spend your late teens and your early 20s having to watch everything you love slip away, unable to be an active participant in the world, you can't understand it. Yet, every resource out there on the clearnet proclaims with utmost certainty that you must have something that makes life worth living, otherwide you're mentally ill.

Having no family, hardly any friends, no societal incumbent dedicated towards me not starving or ending up homeless as a consequence of my impairments, no talents, no future, a body that's been busted all to smithereens by the wear and tear of scuffed genetics, years of abuse, neglect, and the good old nit and grit hard work ethic that optimists love to praise so much - yes, there is so much to live for in these conditions!

Learning new things, having a goal to achieve, or finding people to enjoy things with- as simplistic as these desires are- were my reasons for existing. I have always been very passionate about science, and even when I had to drop out of university the first time, I didn't give up pursuing that path. Little did I realize that reality is far from the sophistication of high earnings, sleek, high tech facilities, and a culture of genuine curiosity that the media portrays this sector as.

Not to mention, many of the things I study are chilling and heartbreaking. The knowledge feels like a forbidden fruit, much like consciousness and self awareness is, at it's very core, something that should be off limits to the confines of the human mind. What I have learned, in my studies of the brain, is that there is a vast array of health conditions, malignancies, and disorders that are simply incurable as they have resulted from permanent damage and misfiring of the nervous system's immune cell functioning. At most, perhaps we will see preventative measures, but if you have a neuronal affliction in this day and age, you might as well be a medieval peasant suffering from a bacterial infection in an era where the advent of antibiotics couldn't even be conceived.

People like me, dont cut it in science. However, I have invested everything into getting a degree, as my body could not handle hard labor any longer. I didn't realize that PhD candidates are forced to live on poverty level stipends, and work themselves down to the bone, for no recognition, no reward, and no respite from the publish or perish culture. Yesterday, I was told by a gleeful staff member that the future is so exciting for all of the students in my cohort. Sure, she had to do unpaid lab labour for months upon months while working another job, but it was worth it in the end to become an academic.

A person like me, who struggles to get out of bed, who suffers daily from constipation and pain, whose brainfog places stopgaps on socialising, mingling, and engaging in constant activity.. simply cannot survive in this cutthroat environment. Did you know, I had to send over 50 email enquiries just to get ONE professor to sponsor me to even apply for a job? Not selected for the position mind you, simply for the privledge of moving onto the application stage.

I can't even keep up with a low intensity part time job. How will I ever work at the pace of your average person? Yet, the powers that be demand it. I'm not allowed to die, but I'm not allowed to slip up and fail to produce labour for a world that's squeezed me dry. Perhaps all of this could be worth it, if it were true what my tutor and others said about university being a magical time where one forms lasting friendships and has barrels of fun.

Every day I have to live with the knowledge that life is slipping away from me and I cant engage with things that give life meaning and purpose. I'm not going to parties, traveling multiple times a year, making friends, learning skills, and having a life worth living. Seeing photos of people my age out with their friends, sight seeing, having chill nights out, making conversations, hurts and burns me to the core in such a visceral way that I cannot articulate.

I seriously don't know how people can say to me in good faith that it will get better when it is a fsct intrinsic to biology that one's health only declined with age. With time, my autistic traits have also become more pronounced which has lead to further ostracisation because autistic adults might as well be cannon fodder in the eyes of "healthcare heroes" who stop giving a damn the day after a child turns 18.
Wow beautifully written and so immensely relatable. Sending love ❤️
 
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raghu1977

Nerd
Jan 29, 2022
121
Do you know the cause of yours?
If you don't mind my asking.

I think sometimes the usual remedies for such a thing may not work when there is an underlying condition or something else severely amiss with the body.
(Also certain foods and supplements can cause an upset if there are other factors in the mix, what may help one problem, might agitate another.)
But I don't want to speak for OP, maybe this could be helpful regardless.
And it's nice of you to offer your regimen.
I don't know the exact cause of my constipation, but I believe it was self induced. But I have multiple issues (hemorrhoids, abscess and fistulas) that becomes much worse with constipation. I was raped anally when I was a kid. That led to fissures, which eventually got infected and led to anorectal abscess which eventually led to multiple fistula tracts including to my testicles. And over the course of multiple surgeries - my entire abdomen is basically a bunch of scar tissue.

And of course due to the pain when I pooped - I would try to avoid pooping. I would drink barely enough water. And try to avoid pooping as long as I could. So - I would poop once a week. Basically induce constipation. And when I did poop it would be painful and bloody. And it would take me a day or two to recover.

That was not very smart. So right now - I pretty much baby my digestive system so I don't wind up with a colostomy. Make sure my stools are as soft as possible and that I poop every day in the morning.
 
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Licoricepasta

Member
Dec 21, 2021
8
There's some good advice for constipation here. I'd like to add:

There's a herbal supplement called Triphala, originating from the Indian subcontinent. I order it from one of the OG suppliers here in India, but you can find it in the US as well from what I know. I usually add one heaping teaspoon of it to a cup of hot water, and pretend I'm making a drink of SN, lmao

I have a physical condition that causes constipation, and I have noticed that Triphala helps even when my ailment is out of my control (it is a lot of times, due to my abysmal mental health, sadly)

Good luck, friend. Here's hoping things get better.
 
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Pain In The Ass

Pain In The Ass

Wizard
Feb 10, 2022
638
Then what is the point of trudging on?

Health, love, contentment, passion, aspiration, learning skills, refining a craft, creativity, companionship, and curiosity are all core tenants of what makes life worth living, I believe.

There are people who exist with no love, yet their health remains intact. Likewise, a man can experience great love, whilst being in horrible health. If you have some of these motivations for living, it becomes easier to cope with the absence of the other keystones.

When you've lost all of these, it's hard to see a justification for continuing on with life. Often times, I am told my suffering isn't valid because I'm young, and there's a slim chance things may improve in a decade or so, when I've reached my 30s.

I've had to sit here and watch so many prospects be pissed away due to my illnesses and my lack of proper childrearing and familial support. While other people my age are out making memories, settling with partners or engaging in fun hookups, traveling, playing sport, chasing a dream career, I spent most of my time running on empty as a consequence of incurable diseases.

It really is no way to live. If I had a family that loved and cared for me, perhaps I could carry on, but proper support is seen as a frivolous accessory unless you've deterioriated towards the point of being trapped in a bed full of piss or reaching destitution levels of starvation, a scenario in which an institution will be held culpable for abandonment.

Like most people, I had dreams, but they were crushed as soon as I became sick and realized the world has 0 pity for people with invisible or misunderstood conditions. Today, in fact, some regular bloke was mouthing off on BBC Ulster radio about how CFS is a yuppie flu, basically treating it like a nothingburger made up delusion invented by "le heckin lazy milleneals who don't wanna work xx"

Every day of my life, I have to watch the authorities (who dictate the rules and influence public opinion) spit in the face of real world data and pretend illnesses like mine don't exist. I have to keep fumbling on with education despite massive gaps in my attendance and clear failures on my end to keep up with a schedule. I have to accept the reality that eventually I won't be invited to any social events because my health has lead to me having to say no one too many times. I have to wear the mask of a functioning member of society who isn't visibly ill, to not lose my livelihood.

When you are sick, infirm, and emfeebled in any way, life is not kind to you. While it would be nice if there was tangible support for those in my position, that's wistful thinking. I don't see anyone campaigning for systemic reform outside of this outlet, all anyone does is say we need better access to mental health services and people won't be suicidal anymore, regardless of whether or not your issue stems from a mental illness or not.

Every year, benefits are cut for those who rely on them, therapy is purported as a viable alternative to socialisation, and "mental health" charities rake in immense donations and profits which go towards newsletter bulletins, useless apps, and mindfulness social media posts. Newsflash, no amount of "cheer up" rhetoric is going to make my life worth living.

Until you have spend your late teens and your early 20s having to watch everything you love slip away, unable to be an active participant in the world, you can't understand it. Yet, every resource out there on the clearnet proclaims with utmost certainty that you must have something that makes life worth living, otherwide you're mentally ill.

Having no family, hardly any friends, no societal incumbent dedicated towards me not starving or ending up homeless as a consequence of my impairments, no talents, no future, a body that's been busted all to smithereens by the wear and tear of scuffed genetics, years of abuse, neglect, and the good old nit and grit hard work ethic that optimists love to praise so much - yes, there is so much to live for in these conditions!

Learning new things, having a goal to achieve, or finding people to enjoy things with- as simplistic as these desires are- were my reasons for existing. I have always been very passionate about science, and even when I had to drop out of university the first time, I didn't give up pursuing that path. Little did I realize that reality is far from the sophistication of high earnings, sleek, high tech facilities, and a culture of genuine curiosity that the media portrays this sector as.

Not to mention, many of the things I study are chilling and heartbreaking. The knowledge feels like a forbidden fruit, much like consciousness and self awareness is, at it's very core, something that should be off limits to the confines of the human mind. What I have learned, in my studies of the brain, is that there is a vast array of health conditions, malignancies, and disorders that are simply incurable as they have resulted from permanent damage and misfiring of the nervous system's immune cell functioning. At most, perhaps we will see preventative measures, but if you have a neuronal affliction in this day and age, you might as well be a medieval peasant suffering from a bacterial infection in an era where the advent of antibiotics couldn't even be conceived.

People like me, dont cut it in science. However, I have invested everything into getting a degree, as my body could not handle hard labor any longer. I didn't realize that PhD candidates are forced to live on poverty level stipends, and work themselves down to the bone, for no recognition, no reward, and no respite from the publish or perish culture. Yesterday, I was told by a gleeful staff member that the future is so exciting for all of the students in my cohort. Sure, she had to do unpaid lab labour for months upon months while working another job, but it was worth it in the end to become an academic.

A person like me, who struggles to get out of bed, who suffers daily from constipation and pain, whose brainfog places stopgaps on socialising, mingling, and engaging in constant activity.. simply cannot survive in this cutthroat environment. Did you know, I had to send over 50 email enquiries just to get ONE professor to sponsor me to even apply for a job? Not selected for the position mind you, simply for the privledge of moving onto the application stage.

I can't even keep up with a low intensity part time job. How will I ever work at the pace of your average person? Yet, the powers that be demand it. I'm not allowed to die, but I'm not allowed to slip up and fail to produce labour for a world that's squeezed me dry. Perhaps all of this could be worth it, if it were true what my tutor and others said about university being a magical time where one forms lasting friendships and has barrels of fun.

Every day I have to live with the knowledge that life is slipping away from me and I cant engage with things that give life meaning and purpose. I'm not going to parties, traveling multiple times a year, making friends, learning skills, and having a life worth living. Seeing photos of people my age out with their friends, sight seeing, having chill nights out, making conversations, hurts and burns me to the core in such a visceral way that I cannot articulate.

I seriously don't know how people can say to me in good faith that it will get better when it is a fsct intrinsic to biology that one's health only declined with age. With time, my autistic traits have also become more pronounced which has lead to further ostracisation because autistic adults might as well be cannon fodder in the eyes of "healthcare heroes" who stop giving a damn the day after a child turns 18.
I refuse to live a life, due to developing chronic pain, where government policy dictates whether I get to eat and pay my rent or not. I'd rather not live at all, than live with someone else controlling my life.
 
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ThriveOrDie

ThriveOrDie

We are already in hell
Jul 11, 2019
449
Magnesium oxide supplement is good for constipation. I have had chronic constipation for years. I have to take magnesium or an enema daily to stay regular. Eating really high fiber diet and lots of water doesn't help me.
 
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