Chronic illnesses are like a lifelong prison sentence, where only the sufferer can see their own shackles.

[Wrennie]

I almost couldn't read your post to the end. Had to stop and lie down a little, just thinking about the pain you had endured.

It is almost like all the problems of the world fell upon you.
I couldn't even think straight for a long time and still can't. I felt pain in my entire body, felt dizzy, I could simply feel all the pain you said and you actually didn't even described how it is and I would prefer that you don't, please.

There's simply nothing for me to write here, nothing at all. No words I can offer for you, for Kuri, for Persephone and for a lot of other people here like JustJudah, Journeytoletgo and a lot of others that I had the pleasure to meet, because all of you are heroes, this universe is not big enough to contain how beautiful everyone of you are

There's a lot that I wish to say here but it's something that would not heal any of your pain, take away not a second of what you went through and are still enduring.

Just how did you guys do it? And you manage to threw a little joke during your post. And I thought I could joke around even when things were bad.

I'm nothing compared to you. I wish I could sacrifice myself. If it could at least take away some of your pain, all of you deserves all energy I have left, which it does seem much for me, but I'm probably don't even know what I'm talking about.

I'm sorry everyone, sometimes I brag about my life here, but I'm probably an ungrateful fool.

I lost a lot and had having really a bad day today, simply thinking about my life and now ... I just wish I could do something to help and I can't.

Thank you for your kind words. This website is a space where I can find refuge & comfort in spite of my pain mainly because of the beautifully kindhearted/empathetic individuals such as yourself that reside here. You add value just by being you. Never feel the need to apologize for a "perceived deficit" in suffering. If you're present on a site such as this, I'm sure that your reasons for being here are perfectly valid and justifiable. You need not ever have to justify them to anyone.

It is a selfless and heartfelt wish to yearn for the ability to liberate others from the chains of suffering that bind them at one's own expense. Though, even if it *could* be done, I would not wish for you to sacrifice yourself in order to achieve it, for that would not eliminate the pain but simply shift it onto another blessed soul undeserving of torment.

I'm sorry that my post affected you in such a manner.
Unfortunately I still haven't even begun to touch upon my pain.

I used to be an artist & volunteered/taught at an art studio back in 2018-2019 before Essential Tremor stemming from my autonomic nervous system failure stole away my ability to draw. I can't even hold the pen steady in my hand anymore. Art was the one thing I truly prided myself on... I poured every fiber of my being into attempting to master it. Even as I was suffering from severe psychological abuse and invisible illness during my childhood, the one thing that kept me going were people complimenting me on my pictures and saying that they knew that "one day I would make something magical". Although my form of encephalitis drastically impacts spatial intelligence and made it substantially harder for me to improve upon my skills than perhaps many other artists in the making, I still kept at it & never gave up, because I had a dream. Something to cling onto when I felt myself slipping. But now all of my efforts have been rendered meaningless. It's as though I've been amputated, and a part of my soul severed along with it.

Example of how PANDAS affects one's drawing skills:


For a while after I jumped off of a building, immersing myself in my art was what kept me sane. How ironic that I'd lose that too, nearly a mere year post-incident. When I was undergoing involuntary ECT sessions while sectioned/imprisoned in a psychiatric ward (& simultaneously in the process of trying to recover from my traumatic injuries I'd sustained from the fall) I noticed a newfound deficit in the quality of the pictures I produced, and that was enough to throw me into a full-on breakdown mode (thankfully these specific ECT-induced side effects only proved to be temporary, since my tears borne of utter desperation didn't faze my mother into putting a stop to my brain electrocuting sessions). At the time I couldn't fathom a life without my art... Now, due to an entirely unrelated cause, my worst nightmare has become an objective reality.

I live in a perpetual state of fear that I'll continue to lose everything remaining in this world that I cherish. My diseases have stolen from me my body; its' functionality and its appearance. My hair is literally turning white (It completely skipped the grey phase). A family member commented that I looked like something out of the Holocaust and nearly fainted when she saw me (I rarely leave my room), but I've been deliberately starving myself... so that reaction made perfect sense on her part. I've severed all contact with friends & relatives (completely dropping off the face of the earth from their perspective) because I don't want them to see what I've been reduced to, nor would I be capable of deriving enjoyment from our interactions any longer.

You ask how I keep going... It's because I can't risk the consequences of failure. If I had a peaceful, guaranteed method at my disposal (such as one hundred 100 mg Seconal tablets) I would be in the ground right now. In other words, I suffer greatly solely to prevent greater suffering.

 

[Midgardsorm]

I'm sorry that my post affected you in such a manner.
Unfortunately I still haven't

It affected because I felt for you. There's no need to apologize. I'm glad to meet someone as brilliant as you.

About your story with art. I'm deeply sorry.
Crushed dreams are the worst.

I always wanted to sing. I used to play with some friends years ago, I was the vocalist, though I were never good at it and was only helping them to practice I enjoyed a lot.

They went on with their lives, I hope they're still playing, they were very good.

I wanted to improve and be a good singer, but, I developed some kind of breathing condition. It's not asthma but It makes me feel breathlessness all the time and I just can take a good deep breath. I fear I will never be able to sing again.

So I kinda can relate to your pain, not as nearly as you do, but I just wanted you to know that you're not alone in this.

 

[Cryptonite]

My life is little more than a hollow shell, any meaning that could have existed has long been scooped out. I eat, shit, sleep - all with substantial struggling - and that is it. It has reached a point where that is all I can manage right now. Were it not for this forum, I would have no outlet or connection to the world beyond my bedroom.

Even the mere act of being awake involves excessive energy, as though there is an invisible leech slowly sucking the life out of me day after day, feasting on my will to stay alive.

I am mostly bedbound, and going to the toilet feels like an achievement. A shower is a luxury, one often out of my grasp due to disabilities, chronic pain and fatigue, along with anhedonia, dissociation and utter hopelessness. Last time I showered, it took me three and a half hours, with breaks at frequent intervals to avoid falling or fainting. It is a laborious task requiring extensive exertion during and afterwards. By the time I have dried off and dressed myself, I am so soaked with sweat that I may as well have never bothered at all.

My physical and psychological illnesses all combine to create this constant intolerable torment. Every moment and every movement is a considerable challenge and everything I do must be carefully calculated, to fend off further fatigue and pain.

But no-one in my life understands this. No-one comprehends or accepts how debilitating my disabilities truly are, or how profoundly they impact every aspect of my life. They cannot fathom how unbearable it is to live with a plethora of diagnosed and undiagnosed illnesses, both physically and psychologically, with no effective treatment.

I have encountered so much gaslighting, ignorance and neglect from medical professionals that I have given up on the prospect of getting any substantial help. It is always the same, unsolicited cookie cutter advice from every doctor, every therapist, every friend and every stranger:

"Go for a walk."
"Lose some weight."
"Try X [insert medication, a type of diet, a supplement, yoga, mindfulness etc.]"

How am I supposed to go for a leisurely stroll or utilise exercise to lose weight if I am physically incapacitated to the point of being bedridden? How am I supposed to do anything if I cannot function or manage the absolute bare minimum? How is mindfulness or multivitamins going to cure my permanent physical disabilities, CFS/ME, chronic pain, Complex PTSD and everything else that is ravaging my body and brain with every breath I take?

I am not only sick of being sick, I am sick of being imprisoned by my own flesh, in these invisible shackles that only I seem to see. I am sick of being misunderstood and patronised by people who do not know the first thing about my life or the hellish misery I contend with every day. I am sick of being expected to do the exact same things that able-bodied, healthy and neurotypical people do with no problems and no support. I am sick of being expected to thrive in a society that was never built for the ill, the disabled and those who do not abide by the status quo. I am sick of knowing that the only key that will unlock these shackles is death, but being told that I must live no matter what, that I will get better (despite only ever experiencing deterioration), that I must fight and conquer my conditions. I am sick of hearing that I am too young to die, as though my anguish and pain and suffering only matters if I live to some momentous milestone, with no consideration for my capacity to survive another several decades or for the staggering deterioration and loss of basic dignity I will endure in this time. I am sick of being told that life is a gift, when it has felt far more like a curse, one that was thrust upon me through no choice of my own.

I am sick of being burdened by this life, and of my life being a burden. I just want to go to sleep. I want to curl up in a comfy bed with my cat purring on my chest and the only person I love holding my hand and go to sleep, for the very last time. But no. This society is an anti-choice, anti-death and anti-euthanasia conglomerate that would rather I die alone, afraid and potentially in pain - after a life of mostly fear, isolation and suffering - rather than calm, comforted and at peace.

I cannot find peace in life, and I will only ever suffer as my health declines. All I want is to have autonomy and choice regarding my own body. All I want is to die with dignity. All I want is to rest in peace. Why is that too much to ask?

What a wonderful text. I especially resonate with the "doctors" part. Downplaying and ignorance of medical professionals is absolutely astounding. Due to my own severe spinal condition, I've visited 10-15 doctors and what I've seen and heard made me deeply hate doctors.

They complain about "googling patients". However, any patient googling their illness for a substantial amount of time will most likely know MUCH MORE about it than any doctor. After all, how much did they spend on studying your condition in college? Plus, did they update their knowledge since then? I highly doubt so.

Luckily, this can be to some degree overcome with Internet reviews. 5-star doctors will be probably much more knowledgeable and empathetic than 1 or 2-star doctors.

BTW, regarding ME/CFS: I've heard there is some big and promising trial on the way, maybe in Germany?

 

[SolomonKado]

As much as it breaks my heart to hear stories like this it makes me feel they will never stop. My story is another tragic one that I've finally lost the will to continue on. The things that should help me to carry on are not strong enough anymore. Some of them cause more pain anyways.

Maybe…if it wasn't for chronic pain I may have lasted longer, but when the pain lets me know it's there 24-7 it also reminds me of everything. What caused it, what it's caused, and the lack of understanding and help.

Unless you have a cast on or a Noticeable injury then lots of people think it's no big deal. Oh you have mental issues?…go see a doctor so you can work like everyone else who doesn't have these problems…you NEED to be like everyone else…a lot of things that caused more change were brought about my lawsuits…so it's an issue that has to be forced and even then it's still not followed…

The biggest thing in management is money and what will lose it. Mental and Physical Health of people doesn't save or make them money so they usually ignore it until they are sued. I freaking hate this world….the right thing is overlooked for the thing that make money. Why the fuck does a person need so much money they can't spend it all?!?! Greedy AF…..

 

[icantSleep]

My life is little more than a hollow shell, any meaning that could have existed has long been scooped out. I eat, shit, sleep - all with substantial struggling - and that is it. It has reached a point where that is all I can manage right now. Were it not for this forum, I would have no outlet or connection to the world beyond my bedroom.

Even the mere act of being awake involves excessive energy, as though there is an invisible leech slowly sucking the life out of me day after day, feasting on my will to stay alive.

I am mostly bedbound, and going to the toilet feels like an achievement. A shower is a luxury, one often out of my grasp due to disabilities, chronic pain and fatigue, along with anhedonia, dissociation and utter hopelessness. Last time I showered, it took me three and a half hours, with breaks at frequent intervals to avoid falling or fainting. It is a laborious task requiring extensive exertion during and afterwards. By the time I have dried off and dressed myself, I am so soaked with sweat that I may as well have never bothered at all.

My physical and psychological illnesses all combine to create this constant intolerable torment. Every moment and every movement is a considerable challenge and everything I do must be carefully calculated, to fend off further fatigue and pain.

But no-one in my life understands this. No-one comprehends or accepts how debilitating my disabilities truly are, or how profoundly they impact every aspect of my life. They cannot fathom how unbearable it is to live with a plethora of diagnosed and undiagnosed illnesses, both physically and psychologically, with no effective treatment.

I have encountered so much gaslighting, ignorance and neglect from medical professionals that I have given up on the prospect of getting any substantial help. It is always the same, unsolicited cookie cutter advice from every doctor, every therapist, every friend and every stranger:

"Go for a walk."
"Lose some weight."
"Try X [insert medication, a type of diet, a supplement, yoga, mindfulness etc.]"

How am I supposed to go for a leisurely stroll or utilise exercise to lose weight if I am physically incapacitated to the point of being bedridden? How am I supposed to do anything if I cannot function or manage the absolute bare minimum? How is mindfulness or multivitamins going to cure my permanent physical disabilities, CFS/ME, chronic pain, Complex PTSD and everything else that is ravaging my body and brain with every breath I take?

I am not only sick of being sick, I am sick of being imprisoned by my own flesh, in these invisible shackles that only I seem to see. I am sick of being misunderstood and patronised by people who do not know the first thing about my life or the hellish misery I contend with every day. I am sick of being expected to do the exact same things that able-bodied, healthy and neurotypical people do with no problems and no support. I am sick of being expected to thrive in a society that was never built for the ill, the disabled and those who do not abide by the status quo. I am sick of knowing that the only key that will unlock these shackles is death, but being told that I must live no matter what, that I will get better (despite only ever experiencing deterioration), that I must fight and conquer my conditions. I am sick of hearing that I am too young to die, as though my anguish and pain and suffering only matters if I live to some momentous milestone, with no consideration for my capacity to survive another several decades or for the staggering deterioration and loss of basic dignity I will endure in this time. I am sick of being told that life is a gift, when it has felt far more like a curse, one that was thrust upon me through no choice of my own.

I am sick of being burdened by this life, and of my life being a burden. I just want to go to sleep. I want to curl up in a comfy bed with my cat purring on my chest and the only person I love holding my hand and go to sleep, for the very last time. But no. This society is an anti-choice, anti-death and anti-euthanasia conglomerate that would rather I die alone, afraid and potentially in pain - after a life of mostly fear, isolation and suffering - rather than calm, comforted and at peace.

I cannot find peace in life, and I will only ever suffer as my health declines. All I want is to have autonomy and choice regarding my own body. All I want is to die with dignity. All I want is to rest in peace. Why is that too much to ask?

i Can say i understand exactly how is it feels like ...
sorry for this and for evrything happend to you in your life the existing its just a hell loop and waiting for it to stop make it worse i wish you'll get what you want and rest in peace x.

 

[HD72]

Neglected as a child. Years of psych meds. Now I have akathesia dystonia dyskinesia gastroparesis and agoraphobia. The benzos aren't working I can't sit still my face contorts I wad up into a ball. I can't eat. My drs won't help. They just tell me how sad it is and have a nice day. I'm trying to get someone to help me with a way to go that won't leave me in more pain. I'm terrified. Absolutely terrified and very alone. I am worthless.

As much as it breaks my heart to hear stories like this it makes me feel they will never stop. My story is another tragic one that I've finally lost the will to continue on. The things that should help me to carry on are not strong enough anymore. Some of them cause more pain anyways.

Maybe…if it wasn't for chronic pain I may have lasted longer, but when the pain lets me know it's there 24-7 it also reminds me of everything. What caused it, what it's caused, and the lack of understanding and help.

Unless you have a cast on or a Noticeable injury then lots of people think it's no big deal. Oh you have mental issues?…go see a doctor so you can work like everyone else who doesn't have these problems…you NEED to be like everyone else…a lot of things that caused more change were brought about my lawsuits…so it's an issue that has to be forced and even then it's still not followed…

The biggest thing in management is money and what will lose it. Mental and Physical Health of people doesn't save or make them money so they usually ignore it until they are sued. I freaking hate this world….the right thing is overlooked for the thing that make money. Why the fuck does a person need so much money they can't spend it all?!?! Greedy AF…..

I see you. I care. I'm so sorry I can't help. I want someone with me when I go. I have agoraphobia and can't get out to get a tank. I want to go peacefully on my terms. I want something once in my life to be on our terms.

 

[reborn87]

I feel ya, gurl. No matter what the SJWs say, our society is not truly enlightened and progressive if it doesn't allow a painless death to its members,

Our society is torture there needs to be dignity for those sufferring in pain and not just tell us to get help and call some number

What a wonderful text. I especially resonate with the "doctors" part. Downplaying and ignorance of medical professionals is absolutely astounding. Due to my own severe spinal condition, I've visited 10-15 doctors and what I've seen and heard made me deeply hate doctors.

They complain about "googling patients". However, any patient googling their illness for a substantial amount of time will most likely know MUCH MORE about it than any doctor. After all, how much did they spend on studying your condition in college? Plus, did they update their knowledge since then? I highly doubt so.

Luckily, this can be to some degree overcome with Internet reviews. 5-star doctors will be probably much more knowledgeable and empathetic than 1 or 2-star doctors.

BTW, regarding ME/CFS: I've heard there is some big and promising trial on the way, maybe in Germany?

I have full spinal conditions. Was beaten by relatives. Shoulders hips messed up wrists elbows I'm in so many braces. Knees ankles hips. It's all too much.
I'm in so much physical pain I can't drive and showering is chore can't even get to doctors. And then they dismiss u. Need dignity