Venting chronic illness

[sunbleachedfliess]

part vent part question:

i'm wondering how many of us here are chronically ill (physically) - i have POTS, MCAS and ME/CFS, but it's the latter that makes me incredibly suicidal. is there anyone else here dealing with ME/CFS? for context for those who are unaware, there is no approved treatment for this condition as it is under-funded and under-researched, but it is the most horrible thing i've experienced (and i've been through a lot). being trapped in your body, trapped in a dark room, unable to do anything or care for yourself, is worse than death. i feel like i exist in a space between life and death and no one really understands because it's unfathomable to able-bodied and healthy people. i'm tired of watching people live their lives while mine has been reduced to nothing

 

[yabujin]

I have agoraphobia which is like, worse than cancer because I get panic attacks of going far away from home due to losing track or not being able to find a way back.
You barely live with this




Ik it's not physical but it makes you physically sick aswell
Yet I need to leave this shithole country let alone go outside.
I wish I was in a different country altogether

 

[WholeHereafter]

I'm so sorry you also have this and understand. It's truly a living hell. I have some resources from running the gamut with doctors and also being part of a research study. I haven't personally found relief with the limited treatments that I've been able to access, but maybe you could have better luck. Again, I am so sorry you're in this position.

 

[sunbleachedfliess]

I'm so sorry you also have this and understand. It's truly a living hell. I have some resources from running the gamut with doctors and also being part of a research study. I haven't personally found relief with the limited treatments that I've been able to access, but maybe you could have better luck. Again, I am so sorry you're in this position.

i'm so sorry you have this too, it genuinely is a living hell. thank you <3 i'm curious about what resources you have?

 

[PhDone]

part vent part question:

i'm wondering how many of us here are chronically ill (physically) - i have POTS, MCAS and ME/CFS, but it's the latter that makes me incredibly suicidal. is there anyone else here dealing with ME/CFS? for context for those who are unaware, there is no approved treatment for this condition as it is under-funded and under-researched, but it is the most horrible thing i've experienced (and i've been through a lot). being trapped in your body, trapped in a dark room, unable to do anything or care for yourself, is worse than death. i feel like i exist in a space between life and death and no one really understands because it's unfathomable to able-bodied and healthy people. i'm tired of watching people live their lives while mine has been reduced to nothing

Same. ME/CFS, POTS, dysautonomia. Overcome by it totally, all I have is crying and fear. Still have no idea how you are actually supposed to live with this thing. I mean, theres no 'life' per se, but keeping going and doing anything surviving requires? Impossible. Life is done for me.

 

[WholeHereafter]

i'm so sorry you have this too, it genuinely is a living hell. thank you <3 i'm curious about what resources you have?

The first thing that comes to mind are certain medications and supplements recommended by doctors, but it's very possible they're things you've tried. If you're interested in talking more about it feel free to send a PM

 

[sunbleachedfliess]

Same. ME/CFS, POTS, dysautonomia. Overcome by it totally, all I have is crying and fear. Still have no idea how you are actually supposed to live with this thing. I mean, theres no 'life' per se, but keeping going and doing anything surviving requires? Impossible. Life is done for me.

there seems to only be a life when these issues are mild. i was mild over the summer and it was amazing, but i'm severe now and life also feels over

 

[PhDone]

there seems to only be a life when these issues are mild. i was mild over the summer and it was amazing, but i'm severe now and life also feels over

Yeah at least with mild you can get out and do things. Albeit in a compromised way. I realise now I had it mild 10yrs ago. It just showed up as hypersomnia. Could still work but slept constantly outside of this. Came through it somehow. Then always needed good sleep. But didnt realise what I'd actually had. Or the extent of it as a sensitive illness ie. that I probably wasnt cured but just in a kind of remission, and that you could regress super quickly. Which i have. And now no life. I dont see the point in keeping fighting tbh. Maybe thats defeatist, plenty people survive with it for decades. Personally the only thing keeping me here is not wanting to hurt others or leave my cats. So how many days do I stay in pain to avoid their pain. They have lives, I sit here with nothing I can do, feeling gross and in utter torment. This is not something to live through.

 

[sunbleachedfliess]

Yeah at least with mild you can get out and do things. Albeit in a compromised way. I realise now I had it mild 10yrs ago. It just showed up as hypersomnia. Could still work but slept constantly outside of this. Came through it somehow. Then always needed good sleep. But didnt realise what I'd actually had. Or the extent of it as a sensitive illness ie. that I probably wasnt cured but just in a kind of remission, and that you could regress super quickly. Which i have. And now no life. I dont see the point in keeping fighting tbh. Maybe thats defeatist, plenty people survive with it for decades. Personally the only thing keeping me here is not wanting to hurt others or leave my cats. So how many days do I stay in pain to avoid their pain. They have lives, I sit here with nothing I can do, feeling gross and in utter torment. This is not something to live through.

you sound a lot like me - i was mild for months and thought i was in the clear, but it was just temporary remission. i regressed overnight. i also stay so that i don't hurt others, but i came across a tiktok yesterday of someone who was severe for 10 years and then recovered for no reason in a matter of weeks and is able to have a much better quality of life now, so there is hope…. but it's very hard to fight

 

[PhDone]

you sound a lot like me - i was mild for months and thought i was in the clear, but it was just temporary remission. i regressed overnight. i also stay so that i don't hurt others, but i came across a tiktok yesterday of someone who was severe for 10 years and then recovered for no reason in a matter of weeks and is able to have a much better quality of life now, so there is hope…. but it's very hard to fight

Shit, so sorry you've experienced that severe decline too. Its crazy i didnt really know what it was I had until it was too late. I even thought I'd adjusted my life to be more balanced. Too late now.

Thats crazy re the recovery story. Its def a weird as illness. My encounter with it mildly did just disappear after several months. No idea why. This time I'm deep down the pit though and pretty confident theres little chance of a way back. Too much torment and life insecurity to have the nervous system calm enough to come back as well. Maybe that negativity is the ultimate no hope. I'm ok with realising I cant bear this, or the non-life that goes with it.

 

[sunbleachedfliess]

Shit, so sorry you've experienced that severe decline too. Its crazy i didnt really know what it was I had until it was too late. I even thought I'd adjusted my life to be more balanced. Too late now.

Thats crazy re the recovery story. Its def a weird as illness. My encounter with it mildly did just disappear after several months. No idea why. This time I'm deep down the pit though and pretty confident theres little chance of a way back. Too much torment and life insecurity to have the nervous system calm enough to come back as well. Maybe that negativity is the ultimate no hope. I'm ok with realising I cant bear this, or the non-life that goes with it.

i'm sorry that you've felt this pain but it's also comforting to not be alone in it. and i think it's okay to accept that you can't bear this "life", i think that few people can. i won't tell you to hold out hope because i know how incredibly hopeless it feels and i know it would just felt empty, but i do hope that this illness eases up on you soon at least

 

[Aspiring Mushroom]

I have cystic fibrosis. When I was a baby I wasn't expected to live past 10, I had my make-a-wish trip when I was 7. I miraculously stayed alive, going to the hospital every other month for three weeks at a time. I learned to live with this reality, and I became content with the life I had. I was ready for it to be over.

Then Trikafta happened. This gene modulator that was approved by the FDA in 2019. It completely changed my life. I was 23. I wasn't going to the hospital all the time anymore, my lung function became better than it's ever been. Everyone was so happy.

I wasn't happy. I don't believe in god, but I prayed, I begged, for this to not be real. I am not cut out for this. I dropped out of high school, I never had a job, I was ready to go. But my family were so fucking happy. So I tried.

I miraculously got a job at 24, my friend convinced her supervisor to give me a chance. So I started my first job at a medical clinic. I started to be happy. I started to believe that maybe I could actually have the life I had given up on so long ago.

Then I trusted the wrong people, and I let them tear my life into pieces. I fell in love with a man who used me for two years. I got drunk with a coworker who allowed me to be raped by his friend. I lost my best friend because she tried to warn me, and I didn't trust her judgement. I devoted myself to a man threw me away like I was nothing.

And now I am nothing. I am a shell of a person. My health has declined, I've missed so much work that I might lose my job, and when I tried to get help from my doctor she prescribed an unsafe amount of antidepressants and I almost died from serotonin syndrome.

I was never cut out for this life. I was too fucking naive. Now I will never be able to trust a man again. I will never have the life I wanted. And yet I'm still stuck here, staying alive just to keep my family happy.

 

[PhDone]

I have cystic fibrosis. When I was a baby I wasn't expected to live past 10, I had my make-a-wish trip when I was 7. I miraculously stayed alive, going to the hospital every other month for three weeks at a time. I learned to live with this reality, and I became content with the life I had. I was ready for it to be over.

Then Trikafta happened. This gene modulator that was approved by the FDA in 2019. It completely changed my life. I was 23. I wasn't going to the hospital all the time anymore, my lung function became better than it's ever been. Everyone was so happy.

I wasn't happy. I don't believe in god, but I prayed, I begged, for this to not be real. I am not cut out for this. I dropped out of high school, I never had a job, I was ready to go. But my family were so fucking happy. So I tried.

I miraculously got a job at 24, my friend convinced her supervisor to give me a chance. So I started my first job at a medical clinic. I started to be happy. I started to believe that maybe I could actually have the life I had given up on so long ago.

Then I trusted the wrong people, and I let them tear my life into pieces. I fell in love with a man who used me for two years. I got drunk with a coworker who allowed me to be raped by his friend. I lost my best friend because she tried to warn me, and I didn't trust her judgement. I devoted myself to a man threw me away like I was nothing.

And now I am nothing. I am a shell of a person. My health has declined, I've missed so much work that I might lose my job, and when I tried to get help from my doctor she prescribed an unsafe amount of antidepressants and I almost died from serotonin syndrome.

I was never cut out for this life. I was too fucking naive. Now I will never be able to trust a man again. I will never have the life I wanted. And yet I'm still stuck here, staying alive just to keep my family happy.

Omg I'm so sorry. This is so awful. Honestly its hard to face so much suffering. I'm constantly shocked by what people are going through that share on this forum. Equally I'm in awe of the compassion and deep humanity of everyone. I cant reconcile the "dont hurt others" thing. For myself I literally cant fathom what months or years enduring life would have to now mean for me. Endless torture and trauma?

I wonder if you having had a positive upturn can give you hope that this could happen again? Like get through the shit thats happened to you and find a new life without asshole people.

 

[Chronicallyunwell]

I have a chronic uti, it's a living hell, I have tried everything and too scared to kill myself in case I end up in an even worse situation.

 

[Aspiring Mushroom]

Omg I'm so sorry. This is so awful. Honestly its hard to face so much suffering. I'm constantly shocked by what people are going through that share on this forum. Equally I'm in awe of the compassion and deep humanity of everyone. I cant reconcile the "dont hurt others" thing. For myself I literally cant fathom what months or years enduring life would have to now mean for me. Endless torture and trauma?

I wonder if you having had a positive upturn can give you hope that this could happen again? Like get through the shit thats happened to you and find a new life without asshole people.

I'm terrified of becoming happy again, honestly. Losing everything hurts so much, I can't go through this again. I can't handle it. I don't know if I'll survive this as it is, because the emotional pain is so bad that it's making me sick. And I have nobody to support me. When I was in the ER with serotonin syndrome they treated me like absolute garbage, when I could barely speak, and I had nobody there to advocate for me. I'm too fucked up to survive on my own, and I'm too fucked up for anyone to willingly attach themself to me.

 

[broken_stoic]

Have a few chronic conditions including ME/CFS. I think mine is not as far along as yours, maybe not as severe, but it's been getting gradually worse. And my immune system is shit so I've been spending literally months out of each year to sick to do anything. Did actually use Duloxetine for awhile, which did mitigate alot of the muscular pain from ME/CFS, but it sent me in a hell-spiral of feeling like I was living the same day over and over again. I've been on alot of medications over the years, so I didn't recognize what was causing that at first. That was fun.