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heylightiforgot

Experienced
Apr 30, 2019
256
I don't even know why I'm bothering to write this because I have given up on everything in such a profound manner, but maybe someone out there will care about my story.

My life is such an unendurable nightmare that it almost feels like some kind of personal, tailor-made simulation designed specifically to torment me.

I moved to Australia with my family from New Zealand about 9 years ago. My life in New Zealand, compared to this at least, was a paradigm of blissfulness -- I had a job, a creative outlet (as a writer), friends, girlfriends, a stable and happy home. I got on well with my parents and siblings and led some kind of independent existence. This is the happiness and image of life/myself that I cling to so desperately.

Comparatively, things in Australia very quickly deteriorated. The first (and major) problem was that our house was just too small/claustrophobic -- I have a severe noise sensitivity and this sent me into a state of hypervigilance, because I was suddenly confined to a small space with 4 other busy people. I had always been someone who was intellectual/introverted and enjoyed more quiet pursuits like reading, watching movies etc., but doing any of this became almost impossible at home. Additionally, I had experienced a strong onset of fatigue after moving which prevented me from getting a job, so that only compounded the problem because I was trapped in the house most of the day, but had few meaningful ways to spend my time while my family were all home. I never got to establish a life or existence here, never got a job, never made many friends etc.

While I was okay for a few years living like this, after about 5 years, I just couldn't endure it anymore. In addition to the fact that I couldn't really function at home, my mother is a raging narcissist and while this was less of an issue in New Zealand, she began to bully me in Australia for being unable to function (I suppose because I was no longer a source of pride for her). One day, I got so distraught and fed up with our living situation that I lay in bed helplessly for the day and refused to eat, so she ended up calling the cops and trying to have me forcibly hospitalized, which permanently traumatized me and left me feeling completely unsafe in my room from then on.

After being dumped by my psychiatrist because I was treatment-resistant, I kind of just gave up and became a lot more impulsive/reckless and began abusing prescription meds, doing anything I could to sleep the day away, using stimulants to stay up at night etc. I would force myself to go out as much as I could because home was so uncomfortable and not a 'safe place'. Sadly, what I didn't know at the time is that I in fact had chronic fatigue syndrome, and by pushing through my fatigue (which I thought was depression), I was in fact causing extreme damage to myself.

After living this way for about 2 years, I became very sick suddenly and my condition deteriorated into the 'severe' category. For anyone vaguely familiar with CFS, the most damaging thing you can do is to not pace yourself and push through the crashes, and so the stupid lifestyle I had led likely permanently damaged me. Thereafter, I was a true prisoner because now I was stuck in the same awful abusive living situation with almost no autonomy over my physical state and wellbeing. In addition, everything (noise etc.) would affect me physically and trigger a crash, so I was basically just left in a constant survival state around my family, having to please them because anything they did could have a devastating effect on me. At first, I was able to create some meaning out of this new dilemma -- I joined discord and made a lot of friends, fell in love with a girl who I would speak to on the phone. I could still do some stuff like watch TV late at night. But I always felt like a ghost or onlooker at other people's lives, knowing fundamentally that I was now trapped in this situation and wouldn't get out because I had become too sick for any kind of medical intervention and would be unable to move anywhere else or take care of myself. Additionally, it was still the same abusive/hypervigilant living environment, so I was never able to rest or properly take care of myself. I yearned so, so deeply for that sense of safeness/security that other people seemed to take for granted. What's more, I slowly lost more and more of the simple joys in life -- the ability to take warm showers, tolerate foods, eventually unable to watch TV etc. And also had to still make it through an entire day living around my family with few effective ways to fill my time, other than to just endure the distress.

To add to the nightmare, my mother even opened a daycare center at home, so now I had to find ways to try and sleep/cope with screaming children being around all afternoon. There is a point about a year ago where I deteriorated so far physically that I could not stand for more than 5 or 10 minutes. Of course, she screamed at me to get out of bed. If I had left things at that point, I likely would have died, but a friend online suggested trying hydrocortisone because it was likely that my body was simply not producing enough cortisol anymore. At first, it was miraculous -- I regained a significant amount of energy and was able to do things around the house again (effectively 'saving' my own life). But after about a year, it started having less and less effect (though was likely still keeping me alive). My parents took it for granted that I was able to function in such a severe disease state and basically just left me to my own devices, but after my condition deteriorated again a few months ago, I confessed to them what I had been doing. My father became enraged -- blaming me for recklessly using a steroid without medical advice (even though my doctor never offered any solutions). He has always despised me on some level, but alongside my mother will constantly nitpick at everything I do. I've lost a lot of weight and become intolerant to nearly every food, and they constantly blame that as the reason I am so sick (without realizing how much damage this living environment has done to me).

Because I lost even further functioning a while ago, but still had to figure out ways to sleep (because I can effectively die if confronted with too much stress), I became dependent on benzos, which are having less and less benefit and have sapped the last fragments of happiness and cognitive functioning I had left (like the ability to listen to music, podcasts etc.). I also took an overdose out of desperation and ended up trapped in a psych ward for 24 hours, which was awful with my physical condition. I convinced them to let me out, but this led to my parents even further monitoring every aspect of my life. They are trying to force me to eat foods I can't tolerate, giving me ultimatums about living here like having to see a psychologist (which would be almost impossible because I can barely survive in my own household, let alone attend medical appointments etc.).

I have to follow an extremely specific routine everyday designed around my family in order to literally stay alive. But now due my cognitive deterioration the time when I am away from them, late at night, is spent doing literally nothing other than lying in the darkness, waiting for the next day. I spend this time engaging in this rich, multi-faceted, tormenting fantasies about how my life could have gone if I had gotten away from them, and the self-care practices I would have implemented while living with my disease because it's like now I've been granted the knowledge of a diagnosis and how the condition should be managed and the opportunities out there when it's just too late. The most painful and tormenting crux of my existence is having to realize that, as a way to cope with living at home, I in fact caused myself irreparable physical damage and just kept myself trapped here, whereas getting out earlier would have literally meant the difference between life and death. I tried, tried so desperately to leave but since I was not a citizen, I never qualified for any kind of social assistance; I reached out to other family here but was rejected. And I watch my family living their lives -- going out, working etc. with such a profound sense of disgust; it's like all these hours I must now spend alone in the darkness are some kind of spiritual punishment I have to endure for their mistakes. And they continually gaslight me, blame me for my illness etc. They have total control over my existence because the minute I lost functioning, they would just dump me in hospital (where I'd probably be killed due to medical/psychiatric abuse). I notice that as soon as I leave the house and am not around them, my entire physical state just relaxes and I am now aware how damaging 8 years of constant hypervigilance must have been.

I feel like the lowest form of garbage on earth, because I don't get to experience anything a human being should -- social contact, friendship etc.As someone artistic who cherished so much about this world, I cry realizing I now don't get to access anything -- music, TV shows, movies etc. -- anymore. I'm not entitled to real medical treatment. I'm in a disease state where I'm theoretically dying but am also left to completely take care of myself.

And everyone, especially at home, thinks all I do is sit around lazily, doing nothing, not realizing that literally all I am doing is trying to survive and make it to the next day for no real gain. I don't even hate myself enough to want to die -- I'm attractive, intelligent, used to be funny and well-liked etc. Sometimes I will go out to doctor's appointments etc. and this glimpse of the 'outside' world I get is so haunting and painful because it's like I no longer belong or get to be a part of it; I feel like some weird hostage. I'll interact with Uber drives etc. and try to appear normal, knowing that once I go home again I'll just disintegrate into the same corpse.

I'm reminded of a Sylvia Plath quote: 'Perhaps when we find ourselves wanting everything, it is because we are dangerously close to wanting nothing.' It's like being so completely removed from life makes me simultaneously yearn for everything it holds, and in my fantasies I've created this parallel life of how things *should* have gone that I find it impossible to let go of, because I blame myself now for compromising every value I held dear (like looking after my health etc.) and can't accept that this wasn't really my fault.

I know people die and that the universe isn't fair, but it also feels unfair that I did not have to get this sick and reaching this point was completely preventable in theory. I was not suddenly stricken down by some cruel disease. My life was robbed from me (on every single level) by circumstances beyond my control, but I blame myself 24/7 for not saving myself.

My survival instinct is so strong and engrained because literally all I am doing is surviving all day, but at the same time, I'm living in a complete void and it's hard to accept all of this effort is just for nothing. If I had an impulsive method or a pill I could just take before bed,, maybe I would be gone now, but I have SN and even planning to attempt with that in my living conditions is nearly impossible, but I'm also deluding myself, knowing that I don't want to die. It seems like such an unfair trade-off -- to experience nothing after ... well, experiencing nothing for 4 years. There's no contentment in the idea for me.

I constantly doubt myself (I guess due to the family abuse) and tell myself this is my fault, none of my goals/ambitions/desires matter anyway. But suicide goes so against my own personal values that the idea of having to throw my life away at the expense of others is really sickening. I'm not someone who ever gave up (and, honestly, most people would be long dead after what I've been through) and I feel so angry that there is so much out there I could theoretically try for my anxiety/depression etc. if I was still in a milder/moderate disease state but no longer can. I feel like I failed myself and it's almost impossible to let go of life, seeing all this *possibility* out there that I just never explored or got to explore.

I'm just so sad and heartbroken; I know I have to let go eventually, even though I keep bargaining with myself (I ran out of benzos today, so promised myself it would have to be tomorrow, but I managed to get some from my doctor, and of course I'll panic again in a week when I run out). However, maybe a massive dose of Valium before SN will put me in enough of a stupor that I don't care about attempting anymore. It's just so fucking stupid and awful, and maybe I sound self-centered, but I can't imagine a worse possible set of circumstances created for someone who deep deep down wants to live (I think I just don't have suicide 'in me' at all). I'm trapped on literally every single level a person can be trapped. And now after being robbed of every form of safety (internal/external) all I want is to go back to a 'normal' life -- because all the things I guess 'normal' people take for granted feel so profoundly amplified now. I would give anything just to lie down in a bed and fall asleep normally or watch a TV show or play a video game or talk to a friend on the phone.

Anyway, I'm sorry this is so long. Again, I feel like writing about it or expressing it gives me some 'control' over the circumstances but it doesn't. I'm fucked. And tonight I'll spend hours in the darkness again entertaining my fantasies, then wake up in the same nightmare tomorrow expecting something to be different. I'm so, so sick of it.
 
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justwhy?

justwhy?

Student
Sep 27, 2019
151
Tough situation. You have my sympathies.

Have you maintained any of the relationships you had in NZ? Seems like you just need someone to lean on there until you can get on social security, from which point you might be able to rebuild your life. I understand that even getting back to NZ might not feel feasible right now but if you can find the wherewithal to line the ducks up it seems like your family would gladly pay for your plane ticket. As you say - it would be a huge shame to ctb due to external factors.
 
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heylightiforgot

Experienced
Apr 30, 2019
256
Tough situation. You have my sympathies.

Have you maintained any of the relationships you had in NZ? Seems like you just need someone to lean on there until you can get on social security, from which point you might be able to rebuild your life. I understand that even getting back to NZ might not feel feasible right now but if you can find the wherewithal to line the ducks up it seems like your family would gladly pay for your plane ticket. As you say - it would be a huge shame to ctb due to external factors.

I was too unwell to move back even 3 years ago. Now I'd never be able to look after myself, I'm way too sick. Wish I'd left before this all happened but as I say had no idea I had CFS; hindsight is 20/20.
 
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BlueWidow

BlueWidow

Visionary
Oct 6, 2019
2,179
I'm so sorry for your suffering and torment. I can relate so much to your struggles with your health. I have similar issues and have been diagnosed with chronic fatigue syndrome as well. I'm not sure how much of my issues are chronic fatigue related and how much is thyroid related. I've been told they are connected some how. I can't imagine being stuck in a small space with my family. . . . And your mother opening a daycare center. . . . . I would be going crazy. I don't like loud noise or lots of people or activity going on around me either. And what you said about how difficult it is for you to attend Drs appointments -- yes, I totally get it. I have the exact same problem. And people think if you just get up and move around or force yourself to do things despite how difficult, painful or exhausting it is you'll feel better; but you don't feel better. It actually makes you feel worse, but people can't get that through their heads, so they keep urging you to get up and push yourself beyond your limits. It's frustrating!
I can't offer you anything but my sympathy and the knowledge that you are not the only one struggling with these issues. I'm so sorry you can't even enjoy tv, music, or movies anymore. I can't imagine being in the condition you're in & still having to deal with your family. Your family sounds similar to mine. I didn't get my CFS/ thyroid problems until after I had left home. I can't imagine being that sick and also stuck with my family and at their mercy. I'd rather be dead. I hope you find some peace and comfort some how. I wish I could help or I had an answer for you. :heart: :hug:
 
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heylightiforgot

Experienced
Apr 30, 2019
256
I'm so sorry for your suffering and torment. I can relate so much to your struggles with your health. I have similar issues and have been diagnosed with chronic fatigue syndrome as well. I'm not sure how much of my issues are chronic fatigue related and how much is thyroid related. I've been told they are connected some how. I can't imagine being stuck in a small space with my family. . . . And your mother opening a daycare center. . . . . I would be going crazy. I don't like loud noise or lots of people or activity going on around me either. And what you said about how difficult it is for you to attend Drs appointments -- yes, I totally get it. I have the exact same problem. And people think if you just get up and move around or force yourself to do things despite how difficult, painful or exhausting it is you'll feel better; but you don't feel better. It actually makes you feel worse, but people can't get that through their heads, so they keep urging you to get up and push yourself beyond your limits. It's frustrating!
I can't offer you anything but my sympathy and the knowledge that you are not the only one struggling with these issues. I'm so sorry you can't even enjoy tv, music, or movies anymore. I can't imagine being in the condition you're in & still having to deal with your family. Your family sounds similar to mine. I didn't get my CFS/ thyroid problems until after I had left home. I can't imagine being that sick and also stuck with my family and at their mercy. I'd rather be dead. I hope you find some peace and comfort some how. I wish I could help or I had an answer for you. :heart: :hug:

Thanks. Logically I know I'm better off dead but I think being abused for so long keeps me trapped in fight mode. But I'm fighting for nothing? I have no future now thanks to them. I just live out of instinct/fear. It's just senseless and cruel. I find it hard to fathom such a state of hell exists on earth. I know I deserved better.
 
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piupianissimo

Member
Nov 27, 2019
25
I am so, so sorry for you. Sending much love and hugs, and hope that you will be able to find some type of emotional and physical relief very soon. You're such a strong person and I admire you greatly.
 
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BlueWidow

BlueWidow

Visionary
Oct 6, 2019
2,179
Thanks. Logically I know I'm better off dead but I think being abused for so long keeps me trapped in fight mode. But I'm fighting for nothing? I have no future now thanks to them. I just live out of instinct/fear. It's just senseless and cruel. I find it hard to fathom such a state of hell exists on earth. I know I deserved better.
I understand the fight mode you are talking about. "I find it hard to fathom such a state of hell exists on earth" . I understand that sentiment too. Abusive families are the worst. They set you up for a lifetime of struggle, pain, and difficulty. I believe most of my emotional and physical problems are the results of how I was treated by my family as a child and all the trauma and stress I endured. It's true, you never feel safe anywhere. You have to be constantly on guard all the time, for years and years. It wears you down emotionally and physically and makes you more susceptible to serious illness, particularly illnesses caused by extreme and prolonged stress.
 
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heylightiforgot

Experienced
Apr 30, 2019
256
I understand the fight mode you are talking about. "I find it hard to fathom such a state of hell exists on earth" . I understand that sentiment too. Abusive families are the worst. They set you up for a lifetime of struggle, pain, and difficulty. I believe most of my emotional and physical problems are the results of how I was treated by my family as a child and all the trauma and stress I endured. It's true, you never feel safe anywhere. You have to be constantly on guard all the time, for years and years. It wears you down emotionally and physically and makes you more susceptible to serious illness, particularly illnesses caused by extreme and prolonged stress.

And worst of all, it's so hard realizing I endured all of this -- circumstances that would have broken anyone a long time ago -- and that there is no payoff for the survival skills I learned; compared to this, I would have thrived so much in different circumstances. At best, I just die and my family hates me. That's it.
 
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SawItOnce

Member
Nov 13, 2019
98
Hi @heylightiforgot , your situation is so layered with difficulties that I find myself unable to find words to express sympathy without feeling that they are too shallow. I'm familiar with many issues that you mentioned, but that and being in the exact whole set of circumstances that you experience is a very different thing.

I add my heart to everything people have said here in reply, and I'd like to add one more thing, for what it's worth.

I see that you fight really hard. The fact that you don't get results and can't get traction is only because the outside resistance is matching your tremendous investment and efforts. You have a hell of an adversary. You being so focused on living, on overcoming, I wonder if a certain angle could help you make a crack in what is. The angle is finding the smallest ways that you are *not* trapped in and milking the hell out of them. What follows is what comes to my mind, but of course you know better.
I see how cfs is almost a 100% paralysing condition, it's debilitating, and in combination with the abuse is a complete nightmare, but try to notice and strongly cling to the fact that physically you are not absolutely incapacitated. You are able to move your legs, even if for 5 minutes a day. You hold the capability to create physical distance. Just look at this small treasure that you have and try to find ways to make it work for your survival. How far can you go, what can you reach by walking, by leaving? What difficulties would you meet, would they be preferable to where you are now?
Just muster all you can from anything that you can cling to. This is a major fight, my friend, and you've been very strong, you did well for what you've been faced with.
And worst of all, it's so hard realizing I endured all of this -- circumstances that would have broken anyone a long time ago -- and that there is no payoff for the survival skills I learned; compared to this, I would have thrived so much in different circumstances. At best, I just die and my family hates me. That's it.
It seems that I repeated what you already know. Sorry about that. Keep in mind though that in different, lighter circumstances you would've not built the survival skills that you've built.
 
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Ambie

Ambie

Member
Jun 13, 2019
46
I'm so so sorry youre in this predicament. You don't deserve any of this! Your post really spoke to me because Im in this same fucking hellhole with severe ME/CFS and abusive family situation .. Had to move back in with my parents recently because im way too ill to live by myself. Im living in a dark room 24/7, unable to walk or watch tv..constantly blamed for my illness. Ive experienced a lot of medical abuse by the so called "professionals" too. Its just so fucking unfair.
I dont have energy to write more but im sending you lots of love ❤️ i really hope things get better whether you choose to fight or ctb.
 
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heylightiforgot

Experienced
Apr 30, 2019
256
Hi @heylightiforgot
I see how cfs is almost a 100% paralysing condition, it's debilitating, and in combination with the abuse is a complete nightmare, but try to notice and strongly cling to the fact that physically you are not absolutely incapacitated. You are able to move your legs, even if for 5 minutes a day. You hold the capacity to create physical distance. Just look at this small treasure that you have and try to find ways to make it work for your survival. How far can you go, what can you reach by walking, by leaving? What difficulties would you meet, would they be preferable to where you are now?

What do you mean by this? I can move my legs for 5 minutes, but how does that benefit my survival? I'm basically living in a complete void with no form of growth or advancement possible, with all my behavior being completely meaningless; everyday is just this endless loop where I cling on desperately and endure while my family is awake/around the house; then my 'prize' for surviving the day is to spend all night alone and overly alert, lying in the darkness, fantasizing. This cycle of overstimulating myself to survive the day, then being up at night is just so damaging. And it's how I've spent the past 5 weeks. I obsessively research suicide but can never actually go through with an attempt, a) because I'm scared to die, even though it's either going to happen at my own hands or once I lose further functioning and get stuck in hospital, and b) because the consequences of failing would be devastating (kicked out of home, I imagine).
I understand the fight mode you are talking about. "I find it hard to fathom such a state of hell exists on earth" . I understand that sentiment too. Abusive families are the worst. They set you up for a lifetime of struggle, pain, and difficulty. I believe most of my emotional and physical problems are the results of how I was treated by my family as a child and all the trauma and stress I endured. It's true, you never feel safe anywhere. You have to be constantly on guard all the time, for years and years. It wears you down emotionally and physically and makes you more susceptible to serious illness, particularly illnesses caused by extreme and prolonged stress.

Well I'm convinced that it's my environment that pushed my condition into severe, and ironically kept me trapped here.

I want to shriek every moment I'm awake because, as I say, I've lost access to every basic and meaningful way to pass the time but paradoxically am never able to rest either with everything going on around me. I am CONVINCED that if I had gotten out of here years ago, I'd be immensely more functional and likely able to read, watch TV etc. and have something resembling a human existence. It makes me feel like human garbage because I'll obsessively read over CFS messageboards and see all the stuff people are trying out etc. and realize I don't get to do any of that anymore -- like I'm alienated from even just being a CFS patient. So I'm basically just on constant guard, as you say, terrified of crashing around my family. It's fucking exhausting and mind-numbing. I feel like it was impossible for me to grieve or even get 'tired' of life, because I've barely experienced it over the past 4 years; I'm just constantly hypervigilant, with never a moment to breathe.

And even worse, as I say, is that with my parents being home around all the time (and my mom working here), it makes even the *thought* of attempting terrifying, because I guess my physical condition and declining functioning means I only really get one shot at it. It also completely violates every principle I hold dear regarding my health, well-being etc. Nothing's changing for me, so I know deep down I either have to go for it or basically end up in a psych ward dying, and it's pretty fucked up those are my only two options left.
 
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D

Deleted member 1465

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Jul 31, 2018
6,914
I don't even know why I'm bothering to write this because I have given up on everything in such a profound manner, but maybe someone out there will care about my story.

My life is such an unendurable nightmare that it almost feels like some kind of personal, tailor-made simulation designed specifically to torment me.

I moved to Australia with my family from New Zealand about 9 years ago. My life in New Zealand, compared to this at least, was a paradigm of blissfulness -- I had a job, a creative outlet (as a writer), friends, girlfriends, a stable and happy home. I got on well with my parents and siblings and led some kind of independent existence. This is the happiness and image of life/myself that I cling to so desperately.

Comparatively, things in Australia very quickly deteriorated. The first (and major) problem was that our house was just too small/claustrophobic -- I have a severe noise sensitivity and this sent me into a state of hypervigilance, because I was suddenly confined to a small space with 4 other busy people. I had always been someone who was intellectual/introverted and enjoyed more quiet pursuits like reading, watching movies etc., but doing any of this became almost impossible at home. Additionally, I had experienced a strong onset of fatigue after moving which prevented me from getting a job, so that only compounded the problem because I was trapped in the house most of the day, but had few meaningful ways to spend my time while my family were all home. I never got to establish a life or existence here, never got a job, never made many friends etc.

While I was okay for a few years living like this, after about 5 years, I just couldn't endure it anymore. In addition to the fact that I couldn't really function at home, my mother is a raging narcissist and while this was less of an issue in New Zealand, she began to bully me in Australia for being unable to function (I suppose because I was no longer a source of pride for her). One day, I got so distraught and fed up with our living situation that I lay in bed helplessly for the day and refused to eat, so she ended up calling the cops and trying to have me forcibly hospitalized, which permanently traumatized me and left me feeling completely unsafe in my room from then on.

After being dumped by my psychiatrist because I was treatment-resistant, I kind of just gave up and became a lot more impulsive/reckless and began abusing prescription meds, doing anything I could to sleep the day away, using stimulants to stay up at night etc. I would force myself to go out as much as I could because home was so uncomfortable and not a 'safe place'. Sadly, what I didn't know at the time is that I in fact had chronic fatigue syndrome, and by pushing through my fatigue (which I thought was depression), I was in fact causing extreme damage to myself.

After living this way for about 2 years, I became very sick suddenly and my condition deteriorated into the 'severe' category. For anyone vaguely familiar with CFS, the most damaging thing you can do is to not pace yourself and push through the crashes, and so the stupid lifestyle I had led likely permanently damaged me. Thereafter, I was a true prisoner because now I was stuck in the same awful abusive living situation with almost no autonomy over my physical state and wellbeing. In addition, everything (noise etc.) would affect me physically and trigger a crash, so I was basically just left in a constant survival state around my family, having to please them because anything they did could have a devastating effect on me. At first, I was able to create some meaning out of this new dilemma -- I joined discord and made a lot of friends, fell in love with a girl who I would speak to on the phone. I could still do some stuff like watch TV late at night. But I always felt like a ghost or onlooker at other people's lives, knowing fundamentally that I was now trapped in this situation and wouldn't get out because I had become too sick for any kind of medical intervention and would be unable to move anywhere else or take care of myself. Additionally, it was still the same abusive/hypervigilant living environment, so I was never able to rest or properly take care of myself. I yearned so, so deeply for that sense of safeness/security that other people seemed to take for granted. What's more, I slowly lost more and more of the simple joys in life -- the ability to take warm showers, tolerate foods, eventually unable to watch TV etc. And also had to still make it through an entire day living around my family with few effective ways to fill my time, other than to just endure the distress.

To add to the nightmare, my mother even opened a daycare center at home, so now I had to find ways to try and sleep/cope with screaming children being around all afternoon. There is a point about a year ago where I deteriorated so far physically that I could not stand for more than 5 or 10 minutes. Of course, she screamed at me to get out of bed. If I had left things at that point, I likely would have died, but a friend online suggested trying hydrocortisone because it was likely that my body was simply not producing enough cortisol anymore. At first, it was miraculous -- I regained a significant amount of energy and was able to do things around the house again (effectively 'saving' my own life). But after about a year, it started having less and less effect (though was likely still keeping me alive). My parents took it for granted that I was able to function in such a severe disease state and basically just left me to my own devices, but after my condition deteriorated again a few months ago, I confessed to them what I had been doing. My father became enraged -- blaming me for recklessly using a steroid without medical advice (even though my doctor never offered any solutions). He has always despised me on some level, but alongside my mother will constantly nitpick at everything I do. I've lost a lot of weight and become intolerant to nearly every food, and they constantly blame that as the reason I am so sick (without realizing how much damage this living environment has done to me).

Because I lost even further functioning a while ago, but still had to figure out ways to sleep (because I can effectively die if confronted with too much stress), I became dependent on benzos, which are having less and less benefit and have sapped the last fragments of happiness and cognitive functioning I had left (like the ability to listen to music, podcasts etc.). I also took an overdose out of desperation and ended up trapped in a psych ward for 24 hours, which was awful with my physical condition. I convinced them to let me out, but this led to my parents even further monitoring every aspect of my life. They are trying to force me to eat foods I can't tolerate, giving me ultimatums about living here like having to see a psychologist (which would be almost impossible because I can barely survive in my own household, let alone attend medical appointments etc.).

I have to follow an extremely specific routine everyday designed around my family in order to literally stay alive. But now due my cognitive deterioration the time when I am away from them, late at night, is spent doing literally nothing other than lying in the darkness, waiting for the next day. I spend this time engaging in this rich, multi-faceted, tormenting fantasies about how my life could have gone if I had gotten away from them, and the self-care practices I would have implemented while living with my disease because it's like now I've been granted the knowledge of a diagnosis and how the condition should be managed and the opportunities out there when it's just too late. The most painful and tormenting crux of my existence is having to realize that, as a way to cope with living at home, I in fact caused myself irreparable physical damage and just kept myself trapped here, whereas getting out earlier would have literally meant the difference between life and death. I tried, tried so desperately to leave but since I was not a citizen, I never qualified for any kind of social assistance; I reached out to other family here but was rejected. And I watch my family living their lives -- going out, working etc. with such a profound sense of disgust; it's like all these hours I must now spend alone in the darkness are some kind of spiritual punishment I have to endure for their mistakes. And they continually gaslight me, blame me for my illness etc. They have total control over my existence because the minute I lost functioning, they would just dump me in hospital (where I'd probably be killed due to medical/psychiatric abuse). I notice that as soon as I leave the house and am not around them, my entire physical state just relaxes and I am now aware how damaging 8 years of constant hypervigilance must have been.

I feel like the lowest form of garbage on earth, because I don't get to experience anything a human being should -- social contact, friendship etc.As someone artistic who cherished so much about this world, I cry realizing I now don't get to access anything -- music, TV shows, movies etc. -- anymore. I'm not entitled to real medical treatment. I'm in a disease state where I'm theoretically dying but am also left to completely take care of myself.

And everyone, especially at home, thinks all I do is sit around lazily, doing nothing, not realizing that literally all I am doing is trying to survive and make it to the next day for no real gain. I don't even hate myself enough to want to die -- I'm attractive, intelligent, used to be funny and well-liked etc. Sometimes I will go out to doctor's appointments etc. and this glimpse of the 'outside' world I get is so haunting and painful because it's like I no longer belong or get to be a part of it; I feel like some weird hostage. I'll interact with Uber drives etc. and try to appear normal, knowing that once I go home again I'll just disintegrate into the same corpse.

I'm reminded of a Sylvia Plath quote: 'Perhaps when we find ourselves wanting everything, it is because we are dangerously close to wanting nothing.' It's like being so completely removed from life makes me simultaneously yearn for everything it holds, and in my fantasies I've created this parallel life of how things *should* have gone that I find it impossible to let go of, because I blame myself now for compromising every value I held dear (like looking after my health etc.) and can't accept that this wasn't really my fault.

I know people die and that the universe isn't fair, but it also feels unfair that I did not have to get this sick and reaching this point was completely preventable in theory. I was not suddenly stricken down by some cruel disease. My life was robbed from me (on every single level) by circumstances beyond my control, but I blame myself 24/7 for not saving myself.

My survival instinct is so strong and engrained because literally all I am doing is surviving all day, but at the same time, I'm living in a complete void and it's hard to accept all of this effort is just for nothing. If I had an impulsive method or a pill I could just take before bed,, maybe I would be gone now, but I have SN and even planning to attempt with that in my living conditions is nearly impossible, but I'm also deluding myself, knowing that I don't want to die. It seems like such an unfair trade-off -- to experience nothing after ... well, experiencing nothing for 4 years. There's no contentment in the idea for me.

I constantly doubt myself (I guess due to the family abuse) and tell myself this is my fault, none of my goals/ambitions/desires matter anyway. But suicide goes so against my own personal values that the idea of having to throw my life away at the expense of others is really sickening. I'm not someone who ever gave up (and, honestly, most people would be long dead after what I've been through) and I feel so angry that there is so much out there I could theoretically try for my anxiety/depression etc. if I was still in a milder/moderate disease state but no longer can. I feel like I failed myself and it's almost impossible to let go of life, seeing all this *possibility* out there that I just never explored or got to explore.

I'm just so sad and heartbroken; I know I have to let go eventually, even though I keep bargaining with myself (I ran out of benzos today, so promised myself it would have to be tomorrow, but I managed to get some from my doctor, and of course I'll panic again in a week when I run out). However, maybe a massive dose of Valium before SN will put me in enough of a stupor that I don't care about attempting anymore. It's just so fucking stupid and awful, and maybe I sound self-centered, but I can't imagine a worse possible set of circumstances created for someone who deep deep down wants to live (I think I just don't have suicide 'in me' at all). I'm trapped on literally every single level a person can be trapped. And now after being robbed of every form of safety (internal/external) all I want is to go back to a 'normal' life -- because all the things I guess 'normal' people take for granted feel so profoundly amplified now. I would give anything just to lie down in a bed and fall asleep normally or watch a TV show or play a video game or talk to a friend on the phone.

Anyway, I'm sorry this is so long. Again, I feel like writing about it or expressing it gives me some 'control' over the circumstances but it doesn't. I'm fucked. And tonight I'll spend hours in the darkness again entertaining my fantasies, then wake up in the same nightmare tomorrow expecting something to be different. I'm so, so sick of it.
I can really sympathise with all this. That's one tough situation. I'm in a similar situation, left alone to look after myself even though I can't. Housebound but still expected to go out.
Our specific circumstances are different ofc but I can empathise with the loneliness and feelings of worthlessness. Life really isn't fair and hope is a luxury born of luck and delusion.
I lay awake all night too, that really sucks!
And I fight on too. My si has become so strong because it needs to be to make it through each night. I've spent four years like this now.
I can't offer any advice or practical help, I wish I could. But fwiw you have people on here who can at least try to understand. I wish we could all do more for each other.
 
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Moonicide

Moonicide

ᴘʜᴀꜱᴇꜱ ᴏꜰ ᴛʜᴇ ᴍᴏᴏɴ
Nov 19, 2019
802
I am so sorry, love. Reading this absolutely broke my heart... Like you, I grew up in unfortunate circumstances. Was raised in a abusive household with dysfunctional and mentally ill parents. Parents have no idea what they do to their children.. I also started becoming ill and deal with chronic fatigue along with a cocktail of different mental illnesses. I was told for the longest time it was all in my head, that I could still do basic things so I wasn't sick. Like you, it got so bad to the point my body gave up on me and I couldn't leave the bed for days... I struggled with feeding or even cleaning myself. Getting up to go to the bathroom was all the energy I could muster up and even then, I felt so faint. I wouldn't wish that on anybody. But I just want you to know that you aren't alone and your story has touched my heart...

I hope one day you can be at peace, because you deserve it so much. We both do. :heart:
 
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WilliamKline

WilliamKline

Flâneur
Sep 16, 2019
135
Feel for you buddy. I know the total inability for others to understand CFS, I suffer from it myself, it's a torment. In a 'normal' situation it can be unbearable to see yourself deteriorate, not being able to do things you used to enjoy, see all of your dreams shrivel and die, see others be healthy, happy and attribute it to themselves while it's just a matter of chance really.

Your situation sucks, plain and simple. I also know the devestating effects of not pacing yourself and thus getting stuck in quicksand. I often wish I had a 'serious, observable' disease instead of having this mostly invisible one that at best doctors don't understand and at worst doctors don't take seriously or even deny its existence.

I feel I've gotten to the point where I've more or less accepted that most of my potential has been wasted, things will not get better and I'm not to blame for it. Just want you to know there's folks here that truly do understand you, that's important to know, especially being stuck in a surrounding of ignorance and disinterest.

My heart goes out to you, feel free to PM me if you want to talk
 
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H

heylightiforgot

Experienced
Apr 30, 2019
256
I am so sorry, love. Reading this absolutely broke my heart... Like you, I grew up in unfortunate circumstances. Was raised in a abusive household with dysfunctional and mentally ill parents. Parents have no idea what they do to their children.. I also started becoming ill and deal with chronic fatigue along with a cocktail of different mental illnesses. I was told for the longest time it was all in my head, that I could still do basic things so I wasn't sick. Like you, it got so bad to the point my body gave up on me and I couldn't leave the bed for days... I struggled with feeding or even cleaning myself. Getting up to go to the bathroom was all the energy I could muster up and even then, I felt so faint. I wouldn't wish that on anybody. But I just want you to know that you aren't alone and your story has touched my heart...

I hope one day you can be at peace, because you deserve it so much. We both do. :heart:

Thanks, I appreciate that. I guess because I'm so enshrouded in a fog of abuse at home, and have abandoned all social contact with friends etc. (even online friends who I used to voicechat with), I've lost the sense that my life matters on any level. And all I do is ritualistically torment and blame myself for ending up here. So I guess I wanted to share my story in the hope it made some difference .. even though it doesn't change or improve anything for me; I won't give anything in the world just for some basic autonomy in terms of how I'm able to spend my time. Maybe my death won't be totally futile. But the fundamental, tormenting, spiritual anguish I live with every minute is that I couldn't save myself .. that I let myself down. And that I betrayed the very nature of the person I used to be.

It actually baffles me how fucked up my parents are because they will literally deny and invalidate every single thing I try to tell them; yesterday, I tried to explain to my dad that part of the reason I believe I ended up so sick is because of my severe noise sensitivity, and he got angry and said "how do you even know you have a noise sensitivity?!" LOL. Like I'm not even permitted to trust my own personal experiences. Being exposed to that constantly just fucks your head up and makes you chronically self-doubt everything you experience. Two days ago, my mother came into my room and said "if you don't get the fuck out of bed, I'm sending you to the psych ward"; later, when I brought it up, she said I'm a liar and that she never said that to me. I can't really win with them. Everything I say or do is wrong. They're horrible people and they've broken me on every level. I was a gifted academic, published writer at 21, graduated first in my college degree; now I piss in bottles because I'm too scared to leave my room.
 
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Moonicide

Moonicide

ᴘʜᴀꜱᴇꜱ ᴏꜰ ᴛʜᴇ ᴍᴏᴏɴ
Nov 19, 2019
802
I understand that. I've been communicating with my friends still and I feel absolutely nothing. It's hard to want to communicate with others when you're struggling so bad. I've been so fixated on my death and when will it happen. It's all that matters to me now. I very much spent most of my existence living for people... I just want you to know that none of this was your fault. Your living situation, the circumstances you grew up in, your illness that heavily weighs you down on a daily basis, that is not your fault, love. I know it's easier to blame and hate ourselves, but here's a reminder it isn't your fault. And many more people in this community would say the same exact thing. I appreciate you sharing your story with me so much and it has made a difference. You make me feel less alone and my heart goes out to you in every which way.

I've felt that too. How I've let myself down and how disappointed the old me that was full of hope, life, and dreams would be at me right now. But the thing is, so many people in our lives have let us down. We lacked that fundamental foundation we very much needed while growing up. We lacked stability and consistency. It is so hard to grow and develop into an adult when you lack all of those things. Our loved ones have let us down. The people that were supposed to guide us and keep us safe, have let us down. That reflects on them, and not you. I am sorry you had to deal with such invalidation. Your experiences and emotions are very much real and valid... I had to deal with it too. They broke me too. There are some people, especially our family, are very much unwilling to look at themselves in the mirror and realize the pain they have caused to others, let alone admit to being responsible for it.

But here in this community we stand together. :heart:
 
D

Deltrus

Member
Mar 20, 2019
65
I have moderate and sometimes severe CFS. I can tell you some things that greatly helped my relationship with my parents. They too completely disrespected how I felt, ignored sound sensitivities, told me I just had depression, etc.

- Elucidate and emphasize the difference between depression and cfs. Depression is all about mood and motivation, while cfs is all about body and energy. In depression you can push yourself and get good results because you simply don't want to move, there is nothing stopping you other than yourself.

In CFS it is like runnng your car with the engine light on, there are real, mechanical problems with energy metabolism, and every cell in the body is like a little engine, or a factory. Many people don't understand that cells literally make up your ENTIRE body and energy is what keeps them from collapsing. Energy maintains the negentropic gradient that makes the inside of the cell more orderly than the outside. Without energy this gradient breaks down, making a person very very sick. There are real, physical downsides to running out of energy, based on basic foundational science.

People tend to only look at the emergent aspects of a human, they look at how a person walks, how they think, how they talk, but behind all that is the real mechanics that seperate them from dirt: cells, dna, chemical reactions, metabolism. Your parents simply do not look at you like you are a product of billions of tiny factories in a symbiotic relationship, they just see you.

- Emphasize your boundaries and energy limits, but stay positive. Positivity is all about making the best out of a situation and making a better future. If people think things aren't so bad, they wont be so desperate to "help" you by sending you to the psych ward. You will be effecting them negatively mentally less. They will think you aren't crazy and aren't depressed. They are probably very worried that you will commit suicide because your life has no meaning. Show them otherwise. Tell them you wont give up.

How to be positive: don't bring up your illness in a negative light ever. Just state how things are, don't say how bad you think they are. Tell them how you are doing your best, how you are very limitted but doing things to better yourself within that limited framework. Find ways to grow as a person and tell them.

Optimism is not about lying to yourself, it is about finding deeper truths and principles, ones that EMPOWER yourself to create the best possible future.

Do NOT focus on your disease. Do not think about the disease. Where the focus goes, the energy goes. If you make a physical disease mental, it will become who you are. I don't identify with my disease. I identify as a person who is living life on hard mode, learning about the negative aspects of life in order to be more positive and a better person all around. Disease is honing my heart, teaching me to believe in myself, never put myself down, teaching me how to deal with negative destructive energies etc. Grow AROUND your disease, like a plant growing through concrete or around a fence.

The more you focus on your disease, the crazier and more depressed you will sound. Smile every now and then even if it is fake, but real smiles are better.

Positivity will inspire your parents to be better. You will lead by example. I really think who I am has rubbed off on my parents, making them more positive, loving, respectful, less toxic etc.

- Show your parents unrest on netflix or wherever. Show them there are many others like you.

- get both noise cancelling earplugs and noise cancelling ear muffs.

- make yourself and your room presentable. This can be incredibly hard with so little energy but will make them respect you so much more.

- practice gratitude. Tell your parents how grateful you are for them making you meals and giving you a place to live. Tell them you are grateful for them putting up with your needs and accommodating you. Don't just say it, mean it. Every person deserves gratitude because life is hard.

After all this, my parents are much more respectful. They do not constantly try to fix me or label me as crazy. They tell me to exercise frequently but accept when I decline. They keep the TV or music down when I ask. They don't force me to do chores or cook food. They realize I'm in a very tough situation but I am trying my best within the framework given to me.

I still suffer a LOT or else I wouldn't be on this forum, but I try to let the suffering flow through me and move on. Lots of times I'm clenching my jaw and fists in bed because I'm feeling so much suffering and I want to die so much. But I don't obsess over it and let it pass as best I can.
 
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