My illness will never go away

[Angst Filled Fuck Up]

Sometimes I really don't know how to reconcile the fact that I will never recover. I became sick shortly after my 30th birthday in 2014 and have all but forgotten what it's like to lead a normal life. My fatigue, brain fog and lightheadedness are crushing and soul destroying, especially knowing they're permanent. Even when I muddle through life and think I've done or achieved something meaningful, there is a lingering after-effect of exhaustion, delirium, etc. I feel tipsy, and like I have a form of dementia. Exertion in any form is unpleasant and will give me worsened symptoms in the days thereafter.

For the most part, I have accepted I will never get a diagnosis, but there is no relief anywhere. Nothing really makes it better, none of it is acknowledged or managed in any way. And society is just a bitch. We measure a person's value in terms of how productive they are, essentially how much they work. And with my condition, doing anything work-related is massively taxing and uncomfortable in every way. The more I push myself, the more I'll pay for it. The energy I expend, whether mental or physical, is directly tied to how much I'll suffer in the following days.

Basically I run on 15% and deplete that 15% over and over. I'm a worn out lithium battery.

I have been trying to work (rideshare), but now I'm paying the price. I have really bad symptoms at the moment. My legs are pounding, my head is spinning. I can't believe this is what I get for trying to be productive. All I'm doing is stumbling through a horrible life, and trying to squirrel away every penny I get because I know the future will be even worse.

But I'm tired of thinking about it. Tired of trying to ponder and worry about my future survival. I just want it all to stop.

Assuming I'll have a normal lifespan, I'm only 50% through this nightmare. I have absolutely no clue how to go on for decades more.

How can I do this? I don't have the fortitude to go on. Eventually this whole thing has to end, and I can't last until I'm 70 or 80. N is unsourceable and I'm reaching the end of my tether. What am I going to do?

 

[WhiteRabbit]

I can relate to this 100%. I also worry that the normal older age health issues eventually setting in are going to make an already bad situation even worse.

 

[hamvil]

Can relate with you... at 50% of my life path and lost all the energies and the motivations, really cannot imagine how to go on with this for another 40/50 years. I am here since a bit of time lurking and reading a bit here and there and I am starting to thinking that is time to really start planning the CTB

 

[again_noidea]

Sometimes I really don't know how to reconcile the fact that I will never recover. I became sick shortly after my 30th birthday in 2014 and have all but forgotten what it's like to lead a normal life. My fatigue, brain fog and lightheadedness are crushing and soul destroying, especially knowing they're permanent. Even when I muddle through life and think I've done or achieved something meaningful, there is a lingering after-effect of exhaustion, delirium, etc. I feel tipsy, and like I have a form of dementia. Exertion in any form is unpleasant and will give me worsened symptoms in the days thereafter.

For the most part, I have accepted I will never get a diagnosis, but there is no relief anywhere. Nothing really makes it better, none of it is acknowledged or managed in any way. And society is just a bitch. We measure a person's value in terms of how productive they are, essentially how much they work. And with my condition, doing anything work-related is massively taxing and uncomfortable in every way. The more I push myself, the more I'll pay for it. The energy I expend, whether mental or physical, is directly tied to how much I'll suffer in the following days.

Basically I run on 15% and deplete that 15% over and over. I'm a worn out lithium battery.

I have been trying to work (rideshare), but now I'm paying the price. I have really bad symptoms at the moment. My legs are pounding, my head is spinning. I can't believe this is what I get for trying to be productive. All I'm doing is stumbling through a horrible life, and trying to squirrel away every penny I get because I know the future will be even worse.

But I'm tired of thinking about it. Tired of trying to ponder and worry about my future survival. I just want it all to stop.

Assuming I'll have a normal lifespan, I'm only 50% through this nightmare. I have absolutely no clue how to go on for decades more.

How can I do this? I don't have the fortitude to go on. Eventually this whole thing has to end, and I can't last until I'm 70 or 80. N is unsourceable and I'm reaching the end of my tether. What am I going to do?

as for me, i'm just worried that i will make it worst by ctb.... however, this is a fear not based on science... i don't know, if things would just stop or get better, i mean if i would know, i would be gone within a month. Staying alive doesn't make any sense to me. on the other hand, a human body can endure so much before it gives up, so to just wait until that happens naturally means accepting a lot of suffering. You see, i don't know either, like so many others around here. there is just no rational do decide, when it is enough it is enough, but nobody can tell you when that moment arrives for you. I'm scared, i'm tiered, above all I am sad and alone, i wan't to go, leave this mortal coil, just vanish or be in a better. i really don't know how other people do it.

 

[noname223]

I am no expert and don't know the details but have you ever talked with a doctor about the chronic fatigue syndrome?

 

[Angst Filled Fuck Up]

I am no expert and don't know the details but have you ever talked with a doctor about the chronic fatigue syndrome?

The docs I've spoken to cannot or will not diagnose it as that. The problem is that with some of the more niche conditions, you get into dubious territory and they don't want to commit to a diagnosis that not all doctors can agree even exists.

I'm not someone who wants to just look at a website and go "oh yeah, I've got that" because frankly, there are a million conditions that can potentially cause my symptoms. In an ideal world, I'd want my illness properly diagnosed, but I've pretty much given up hope on that, like I say. And I've played doctor Google long enough.

 

[whatevs]

The only fucking reason I can't abandon this forum despite my wishes is that I relate 100% to your situation myself...

We're stuck between a rock and a hard place. It feels like drowning, like quicksand. You work so hard for so little and misery is always the default. I guess for me, I need more time to try something and lose all hope if nothing works . But all of us that are chronically ill will either kill ourselves or find relief, I don't see an in between personally.

I am no expert and don't know the details but have you ever talked with a doctor about the chronic fatigue syndrome?

Being diagnosed with THAT doesn't help things in any way. It's literally an incurable illness of unknown etiology... Completely useless. Even getting welfare if you're up for that is useless, if you have no wellbeing or energy the money is absolutely worthless. Just to keep you miserably alive haha.

 

[Pluto]

I agree with you all. I'm 41 and find it strange that fighting so hard for so long despite lacklustre levels of energy and motivation can only lead to an even worse outcome. Ageing with no time machine, a lack of anything to show for the years that have passed, burnout with life and no sense of compassion from the outside world.

 

[epic]

I am in the same boat as you. I have got a diagnosis but it keeps changing . Every visit to the doctor gets me thinking, what more bad news will come my way? Sometimes I fear I will get re-diagnosed with something even worse. Just that thought makes me very anxious. I am a pretty optimistic guy but I have given all hope of recovering from my disease as there seems to be no recovery.
Everything else you have written maps on so well with my situation and apparently many others on this thread.

All I would say is to make sure to get a diagnosis, what if it's curable? There's like a flicker of hope. I hope I had some better advice but I myself have not been able to come out of this situation.

Sometimes I really don't know how to reconcile the fact that I will never recover. I became sick shortly after my 30th birthday in 2014 and have all but forgotten what it's like to lead a normal life. My fatigue, brain fog and lightheadedness are crushing and soul destroying, especially knowing they're permanent. Even when I muddle through life and think I've done or achieved something meaningful, there is a lingering after-effect of exhaustion, delirium, etc. I feel tipsy, and like I have a form of dementia. Exertion in any form is unpleasant and will give me worsened symptoms in the days thereafter.

For the most part, I have accepted I will never get a diagnosis, but there is no relief anywhere. Nothing really makes it better, none of it is acknowledged or managed in any way. And society is just a bitch. We measure a person's value in terms of how productive they are, essentially how much they work. And with my condition, doing anything work-related is massively taxing and uncomfortable in every way. The more I push myself, the more I'll pay for it. The energy I expend, whether mental or physical, is directly tied to how much I'll suffer in the following days.

Basically I run on 15% and deplete that 15% over and over. I'm a worn out lithium battery.

I have been trying to work (rideshare), but now I'm paying the price. I have really bad symptoms at the moment. My legs are pounding, my head is spinning. I can't believe this is what I get for trying to be productive. All I'm doing is stumbling through a horrible life, and trying to squirrel away every penny I get because I know the future will be even worse.

But I'm tired of thinking about it. Tired of trying to ponder and worry about my future survival. I just want it all to stop.

Assuming I'll have a normal lifespan, I'm only 50% through this nightmare. I have absolutely no clue how to go on for decades more.

How can I do this? I don't have the fortitude to go on. Eventually this whole thing has to end, and I can't last until I'm 70 or 80. N is unsourceable and I'm reaching the end of my tether. What am I going to do?

The docs I've spoken to cannot or will not diagnose it as that. The problem is that with some of the more niche conditions, you get into dubious territory and they don't want to commit to a diagnosis that not all doctors can agree even exists.

I'm not someone who wants to just look at a website and go "oh yeah, I've got that" because frankly, there are a million conditions that can potentially cause my symptoms. In an ideal world, I'd want my illness properly diagnosed, but I've pretty much given up hope on that, like I say. And I've played doctor Google long enough.

Same. I have googled diseases and then asked the doctor what he thinks ,he will brush it off. I will ask about new symptoms I have developed and he will brush it off. Maybe you could do the same(google and ask), maybe it will help them make a diagnosis.

 

[makethepainstop]

I can relate to this 100%. I also worry that the normal older age health issues eventually setting in are going to make an already bad situation even worse.

I'm terrified of brain problems, not knowing who you are, recognizing no one.

 

[Sadly leaving]

I have extreme Tinnitus and Hyperacusis both severe I'm house bound and cannot talk without pain or hear any audio. I don't sweat and get pins and needles feeling when my body changes temperature. This is pure hell. Everyday noises hurt my ears like voices or most things. Nothing I do works out air bnbs are disasters and outside my window there building apartments. Noise puts me in pain in my traps and neck and ears also my Tinnitus rings so loud and zaps my ears electric shock like. I have everything I need to leave here in these pills 4 of them fent. I can't understand why God isn't here with me anymore or why I been forsaken. I'm not perfect and have done things in life but to have to sit in closets and drink ensure because chewing food hurts my ears and make them feel like shredded cheese I don't feel like I deserve this. I'm terrified of hell. I don't see any healing coming. Damn. This is so fucked up I was healthy and eating right working out then COVID and vaccine and my mouth got very dry and eyes wouldn't water then this started after Prednisone.

 

[chocolatebar]

Sometimes I really don't know how to reconcile the fact that I will never recover. I became sick shortly after my 30th birthday in 2014 and have all but forgotten what it's like to lead a normal life. My fatigue, brain fog and lightheadedness are crushing and soul destroying, especially knowing they're permanent. Even when I muddle through life and think I've done or achieved something meaningful, there is a lingering after-effect of exhaustion, delirium, etc. I feel tipsy, and like I have a form of dementia. Exertion in any form is unpleasant and will give me worsened symptoms in the days thereafter.

For the most part, I have accepted I will never get a diagnosis, but there is no relief anywhere. Nothing really makes it better, none of it is acknowledged or managed in any way. And society is just a bitch. We measure a person's value in terms of how productive they are, essentially how much they work. And with my condition, doing anything work-related is massively taxing and uncomfortable in every way. The more I push myself, the more I'll pay for it. The energy I expend, whether mental or physical, is directly tied to how much I'll suffer in the following days.

Basically I run on 15% and deplete that 15% over and over. I'm a worn out lithium battery.

I have been trying to work (rideshare), but now I'm paying the price. I have really bad symptoms at the moment. My legs are pounding, my head is spinning. I can't believe this is what I get for trying to be productive. All I'm doing is stumbling through a horrible life, and trying to squirrel away every penny I get because I know the future will be even worse.

But I'm tired of thinking about it. Tired of trying to ponder and worry about my future survival. I just want it all to stop.

Assuming I'll have a normal lifespan, I'm only 50% through this nightmare. I have absolutely no clue how to go on for decades more.

How can I do this? I don't have the fortitude to go on. Eventually this whole thing has to end, and I can't last until I'm 70 or 80. N is unsourceable and I'm reaching the end of my tether. What am I going to do?

I still remember that day when I could barely type, and you related to the feeling, saying that your entire life experience is like that. Most of can't even imagine what it feels to be in your place...

a lack of anything to show for the years that have passed, burnout with life and no sense of compassion from the outside world.

This is what hurts me the most about everything. The feeling of being disposable...
people can tell us anything, but when it comes to acting, they will simply throw us away in their first chance, make ill intended comments, etc.

 

[Pluto]

This is what hurts me the most about everything. The feeling of being disposable...
people can tell us anything, but when it comes to acting, they will simply throw us away in their first chance, make ill intended comments, etc.

They lack any life experience that would let them feel genuine empathy for us. They dismiss us rather than face the fact that these situations actually can happen to perfectly good people. They selectively empathise with others so they can feel better about themselves. None of this is of any help to us.

 

[Spiritual survivor]

Sometimes I really don't know how to reconcile the fact that I will never recover. I became sick shortly after my 30th birthday in 2014 and have all but forgotten what it's like to lead a normal life. My fatigue, brain fog and lightheadedness are crushing and soul destroying, especially knowing they're permanent. Even when I muddle through life and think I've done or achieved something meaningful, there is a lingering after-effect of exhaustion, delirium, etc. I feel tipsy, and like I have a form of dementia. Exertion in any form is unpleasant and will give me worsened symptoms in the days thereafter.

For the most part, I have accepted I will never get a diagnosis, but there is no relief anywhere. Nothing really makes it better, none of it is acknowledged or managed in any way. And society is just a bitch. We measure a person's value in terms of how productive they are, essentially how much they work. And with my condition, doing anything work-related is massively taxing and uncomfortable in every way. The more I push myself, the more I'll pay for it. The energy I expend, whether mental or physical, is directly tied to how much I'll suffer in the following days.

Basically I run on 15% and deplete that 15% over and over. I'm a worn out lithium battery.

I have been trying to work (rideshare), but now I'm paying the price. I have really bad symptoms at the moment. My legs are pounding, my head is spinning. I can't believe this is what I get for trying to be productive. All I'm doing is stumbling through a horrible life, and trying to squirrel away every penny I get because I know the future will be even worse.

But I'm tired of thinking about it. Tired of trying to ponder and worry about my future survival. I just want it all to stop.

Assuming I'll have a normal lifespan, I'm only 50% through this nightmare. I have absolutely no clue how to go on for decades more.

How can I do this? I don't have the fortitude to go on. Eventually this whole thing has to end, and I can't last until I'm 70 or 80. N is unsourceable and I'm reaching the end of my tether. What am I going to do?

When these issues began did u have any medical interventions of any kind? It could be linked.

 

[Sad_Sack]

I can relate to this 100%. I also worry that the normal older age health issues eventually setting in are going to make an already bad situation even worse.

Same with me. I can't imagine throwing anything else in top of this.

 

[LookingforAnswers]

Sometimes I really don't know how to reconcile the fact that I will never recover. I became sick shortly after my 30th birthday in 2014 and have all but forgotten what it's like to lead a normal life. My fatigue, brain fog and lightheadedness are crushing and soul destroying, especially knowing they're permanent. Even when I muddle through life and think I've done or achieved something meaningful, there is a lingering after-effect of exhaustion, delirium, etc. I feel tipsy, and like I have a form of dementia. Exertion in any form is unpleasant and will give me worsened symptoms in the days thereafter.

For the most part, I have accepted I will never get a diagnosis, but there is no relief anywhere. Nothing really makes it better, none of it is acknowledged or managed in any way. And society is just a bitch. We measure a person's value in terms of how productive they are, essentially how much they work. And with my condition, doing anything work-related is massively taxing and uncomfortable in every way. The more I push myself, the more I'll pay for it. The energy I expend, whether mental or physical, is directly tied to how much I'll suffer in the following days.

Basically I run on 15% and deplete that 15% over and over. I'm a worn out lithium battery.

I have been trying to work (rideshare), but now I'm paying the price. I have really bad symptoms at the moment. My legs are pounding, my head is spinning. I can't believe this is what I get for trying to be productive. All I'm doing is stumbling through a horrible life, and trying to squirrel away every penny I get because I know the future will be even worse.

But I'm tired of thinking about it. Tired of trying to ponder and worry about my future survival. I just want it all to stop.

Assuming I'll have a normal lifespan, I'm only 50% through this nightmare. I have absolutely no clue how to go on for decades more.

How can I do this? I don't have the fortitude to go on. Eventually this whole thing has to end, and I can't last until I'm 70 or 80. N is unsourceable and I'm reaching the end of my tether. What am I going to do?

Sometimes I really don't know how to reconcile the fact that I will never recover. I became sick shortly after my 30th birthday in 2014 and have all but forgotten what it's like to lead a normal life. My fatigue, brain fog and lightheadedness are crushing and soul destroying, especially knowing they're permanent. Even when I muddle through life and think I've done or achieved something meaningful, there is a lingering after-effect of exhaustion, delirium, etc. I feel tipsy, and like I have a form of dementia. Exertion in any form is unpleasant and will give me worsened symptoms in the days thereafter.

For the most part, I have accepted I will never get a diagnosis, but there is no relief anywhere. Nothing really makes it better, none of it is acknowledged or managed in any way. And society is just a bitch. We measure a person's value in terms of how productive they are, essentially how much they work. And with my condition, doing anything work-related is massively taxing and uncomfortable in every way. The more I push myself, the more I'll pay for it. The energy I expend, whether mental or physical, is directly tied to how much I'll suffer in the following days.

Basically I run on 15% and deplete that 15% over and over. I'm a worn out lithium battery.

I have been trying to work (rideshare), but now I'm paying the price. I have really bad symptoms at the moment. My legs are pounding, my head is spinning. I can't believe this is what I get for trying to be productive. All I'm doing is stumbling through a horrible life, and trying to squirrel away every penny I get because I know the future will be even worse.

But I'm tired of thinking about it. Tired of trying to ponder and worry about my future survival. I just want it all to stop.

Assuming I'll have a normal lifespan, I'm only 50% through this nightmare. I have absolutely no clue how to go on for decades more.

How can I do this? I don't have the fortitude to go on. Eventually this whole thing has to end, and I can't last until I'm 70 or 80. N is unsourceable and I'm reaching the end of my tether. What am I going to do?

What happened after your 30th to spark this? I ask cause i fell ill right after my 30th as well

 

[KuriGohan&Kamehameha]

It is the worst sort of position to be in and few people can understand it until they become sick themselves. You bust your ass for little reward, constantly fighting battles against your body that can't be won while simeltanously not being taken seriously by society and institutions because your illness can't be pinned down to a specific clinical definition, no biomarkers exist, and the etiology remains unknown.

You try so hard to hang in there and take what you can get, but no one sees or acknowledges what a massive undertaking this struggle is. My heart breaks for everyone here who suffers with chronic fatigue, because it is one of the most grim situations to wrestle with.

No recognition from the medical community, which often results in the downstream effect of no support from loved ones since the vast majority would require you to have a "professional opinion/diagnosis" before they would take health problems seriously.. The consequences of this skepticism and lack of acknowledgement from the medical authorities are so far reaching and poisonous.

Understanding that effort doesn't equal results is a hard pill to swallow. You, whatevs, pluto, and many others here have fought hard for a very long time, testing different remedies and life changes to no avail. It's a testament to the resolve you have, many people do crack under the pressure of chronic illness, and it's a goddamned shame that hitting the breaking point of tolerating pain and suffering is seen as weakness or laziness, when it's the exact opposite.

As you know, I relate to all of this way too much and find it so unfair that others have to experience this hell too. At a certain point, it doesn't even feel like life anymore when you're sleepwalking through it. In my case, specific symptoms wax and wane, but the vision problems, impaired circulation, heavy feeling, inability to move my heavy tired limbs too much, and brainfog are a permanent fixture of my life 24/7. When I try to have any semblance of a normal life, I find myself chugging coffee all day, trying to ignore the physical pain and the added difficulties from autism, then promptly passing out as soon as my body touches a chair or bed.

The fear of aging and the "how the fuck can I do this for decades when things are so bad now and have been steadily getiing worse" truly resonates with me. The whole it gets better thing is nice in theory, but it completely defies the rules of biology which dictate that wear and tear will happen to our bodies and damage them over time, as if the case with all multicellular organisms.

My spine is degenerating, and it's only going to get worse alongside the mystery illness. I'm not allowed to have a proper opiate perscription yet, but physiotherapy said I am going to need lifelong pain management for my spine, and I'm only 23. Now imagine how wasted away it will be when I'm 30, or 40, or 50.

My body is eat up with inflammation too, and I'm currently waiting for a scan to find out if I have an oversized ovarian cyst or a tumor which has caused me immense discomfort, crushed my bladder, and made me swell to the level of a pregnant woman. My liver is showing signs of damage so I've had to wait a long time to get the scan because they were unsure if it was wise to inject me with the contrast or not. I'm falling apart faster than a microwaved taco bell chalupa and I'm only 23, what else could possibly go wrong? I don't want to live to see what else could happen.

I wish none of us had to commiserate here like this. In an ideal world, there would be proper research funding, awareness, and a genuine sense of urgency surrounding the investigation of these diseases, to ensure that no one gets stuck in this situation. However, the cynic in me knows that this isn't going to come to fruition any time soon, because we're told to simply get on with it and that chronic fatigue isn't so bad. It makes me so angry that your partner and your family don't seem to even try to understand the awful predicament you're in.

 

[Angst Filled Fuck Up]

What happened after your 30th to spark this? I ask cause i fell ill right after my 30th as well

I had mono and then not long afterwards a very severe food poisoning, for which I was admitted to hospital because it went on for days. Once I got discharged, I started feeling this way. It's been with me ever since.

It is the worst sort of position to be in and few people can understand it until they become sick themselves. You bust your ass for little reward, constantly fighting battles against your body that can't be won while simeltanously not being taken seriously by society and institutions because your illness can't be pinned down to a specific clinical definition, no biomarkers exist, and the etiology remains unknown.

You try so hard to hang in there and take what you can get, but no one sees or acknowledges what a massive undertaking this struggle is. My heart breaks for everyone here who suffers with chronic fatigue, because it is one of the most grim situations to wrestle with.

No recognition from the medical community, which often results in the downstream effect of no support from loved ones since the vast majority would require you to have a "professional opinion/diagnosis" before they would take health problems seriously.. The consequences of this skepticism and lack of acknowledgement from the medical authorities are so far reaching and poisonous.

Understanding that effort doesn't equal results is a hard pill to swallow. You, whatevs, pluto, and many others here have fought hard for a very long time, testing different remedies and life changes to no avail. It's a testament to the resolve you have, many people do crack under the pressure of chronic illness, and it's a goddamned shame that hitting the breaking point of tolerating pain and suffering is seen as weakness or laziness, when it's the exact opposite.

As you know, I relate to all of this way too much and find it so unfair that others have to experience this hell too. At a certain point, it doesn't even feel like life anymore when you're sleepwalking through it. In my case, specific symptoms wax and wane, but the vision problems, impaired circulation, heavy feeling, inability to move my heavy tired limbs too much, and brainfog are a permanent fixture of my life 24/7. When I try to have any semblance of a normal life, I find myself chugging coffee all day, trying to ignore the physical pain and the added difficulties from autism, then promptly passing out as soon as my body touches a chair or bed.

The fear of aging and the "how the fuck can I do this for decades when things are so bad now and have been steadily getiing worse" truly resonates with me. The whole it gets better thing is nice in theory, but it completely defies the rules of biology which dictate that wear and tear will happen to our bodies and damage them over time, as if the case with all multicellular organisms.

My spine is degenerating, and it's only going to get worse alongside the mystery illness. I'm not allowed to have a proper opiate perscription yet, but physiotherapy said I am going to need lifelong pain management for my spine, and I'm only 23. Now imagine how wasted away it will be when I'm 30, or 40, or 50.

My body is eat up with inflammation too, and I'm currently waiting for a scan to find out if I have an oversized ovarian cyst or a tumor which has caused me immense discomfort, crushed my bladder, and made me swell to the level of a pregnant woman. My liver is showing signs of damage so I've had to wait a long time to get the scan because they were unsure if it was wise to inject me with the contrast or not. I'm falling apart faster than a microwaved taco bell chalupa and I'm only 23, what else could possibly go wrong? I don't want to live to see what else could happen.

I wish none of us had to commiserate here like this. In an ideal world, there would be proper research funding, awareness, and a genuine sense of urgency surrounding the investigation of these diseases, to ensure that no one gets stuck in this situation. However, the cynic in me knows that this isn't going to come to fruition any time soon, because we're told to simply get on with it and that chronic fatigue isn't so bad. It makes me so angry that your partner and your family don't seem to even try to understand the awful predicament you're in.

My heart goes out to you so much. You have such terrible pain, which is at least the one thing I don't have (yet). But yeah, absolutely, who wants to wait around for this shit to get progressively worse?

Of course we're all going to die, but to be in discomfort every moment up until that point? It's a death beyond death. You're not supposed to have this much trouble simply by being alive. It's not worth it.