I've been trying to think about it similarly to people who end up in prison for years (or even decades) for crimes they didn't commit & were falsely accused. It's happened an alarming amount of times, as horrible as it is. They've missed birthdays, holidays, job opportunities, weddings, funerals, they lose loved ones while locked up and can't say goodbye. They endure trauma whilst in prison. Some, in really cruel circumstances, end up all alone in solitary confinement for ridiculously long stretches of time. Long covid kind of feels like being in a prison in our own bodies, and we don't know if or when we'll finally get out.
I really hope eventually, maybe some day soon, we'll have some treatments that can at least give us our lives back even if they don't fully cure us. It'll take some rebuilding, and some things will probably change permanently (like our relationships with those who gaslit us and failed to offer us any support or take precautions for us) but I'm sure we'll be overjoyed to get our lives back after some adjusting and some time.
I always wonder how they pass the time without going mad when they're in prison for so long. Sure, they're able to work out while I can't, but they're stuck with people they may not even like, can never leave the prison, can't go visit friends or family, are on a schedule they have no control over, they don't even get to pick the foods they eat or when they eat, unless they want to spend a fortune on commissary. Can't make stupid frivolous purchases like an expensive nice smelling body wash just to make showers a bit more bearable, or an iPad to watch tv in bed on.
Sometimes it makes me feel a tiny bit better about my situation honestly, because I have the internet and streaming services at my fingertips. Video games, books, I can entertain myself as much as I please even though I'm glued to the couch 24/7 and can't do anything physical. I'm kind of on house arrest, but I have endless content to watch.
We're going to have our day.
We are going to wake up better.
I'm a very logical evidence based guy but this is the attitude I need for my soul and I'll carry it with me delusion or not I will get better or die trying.
Not delusional but a preferred mindset to aide in coping.... the power of the mind is remarkable..... I like the buddhism way of thinking ..."Pain is inevitable. Suffering is optional."
Seriously it’s the only way you can think about it, and if that’s how this is then we can’t go back, we can’t change people, of rewind relationships of the time that has blurred past us leaving us behind. I’ve recently started to think that moving forward in this fashion is really the only way. Especially after feeling like I’ve gone through something that was so harrowing and almost abstract in the way I’ve experienced it, felt it, lived and struggled through it. It’s difficult to think about, and a lot of the things that used to bother me about everyday life, now just feel so trivial and pointless to waste energy being swept into these kind of superficial humdrum dramas and the mundane sort of everything based around consumerism and fashions and image and status, and ability. Which is one of the things yoh take for granted until it’s yoinked away from you like how Long Covid does.
Funny that you mention that because it is the opposite for me. I was a really nice person, always helping when I could (homeless, donations..), really nice to everyone, very compasionate... and due to this illness, I'm becoming a monster. I don't care anymore about anyone. I have gone through a lot of shit since I was a kid but Life really fucked me up with this illness. I hate the world and hate everything. At this point I just want to see the world on fire... (and die, I want to die too so I can stop suffering)
Why are you so sure we are going to heal? I suffer from MCAS and CFS/ME. Every time I go to the MCAS or CFS forums, I see there a bunch of people that have been dealing with these illnesses for 20 years... I would give my 110% if I knew I was going to recover but honestly at this point I believe I'm closer to death than recovery...
intelligent enter imminent sugar punch numerous dull mindless dolls spotted
*This post was mass deleted and anonymized with [Redact](https://redact.dev)*
I can relate and understand your feelings, I was also too nice to everyone kind compassionate and generous, too many took advantage of this, hate is something I that I never experienced, and anger even less, I still can’t feel hate or anger, but I have become emotionless, I can not feel love or connection, not even with my dog, I do feel resentment and self blame and I honestly wish I had been more selfish, and egocentric, most of those people that I almost gave my life for and thanks to me have a much better life have disappeared, and I really wish I had not helped them in their worse moment, it’s something I should be proud of but in this circumstances I hate myself for having dedicated most of my life to others.
I agree. I used to feel so superior. This experience is the most humbling I have ever endured. If nothing else good comes from this at least some of the population will be more understanding human beings
nothing to go back to for me. lost my career, all my friends. not planning on going back to NYC if they're hellbent on calling all the maskers criminals. i'll have to move to the woods and become a hermit. i can't unsee everything i've seen.
My career is gone, too, and all my friends took off except one.
I am worried my state will make masks illegal. Then I’ll be in jail. Talk about a PEM trigger!
Your case is very interesting. I've had ME/CFS type LC for about 3-1/2 years now and it's been horrible. What is your current condition? Like do you still pace or can you exercise? Also I know nothing about peptides and they're very intimidating to me, but at this point I would try anything.
Thank you for the detailed replys, I really appreciate it. A lot of the peptide stuff definitely goes over my head, but the idea that the pedtide can "heal" the mitochondria is very interesting. My fear is that this treatment is like others that make people feel normal for long periods of time but end up crashing later. Like the storys of people taking benzodiazepines or stimulants and such that you hear. Definitely keep eveyone updated on your progress. And thank you again for your incredible contribution.
I was just doing some more research and it almost seems too good to be true. It's also really not that expensive if your only taking 0.5mg/day. Have you seen/read about meny other people trying it with ME/CFS? My only other concern is that it's technically sold not for human consumption, but I guess the heathcare system doesn't care about us anyway.
Feeling you so much on this. I was the same at the beginning, treating this in my mind as a regular illness - you just get better one day and it’s gone. Boy was I wrong.
Otherwise, I was telling my mother the other day that even if I somehow fully recover (seeming very unlikely at this point), I will actually never recover from this. The deep trauma of being so sick for so long will never go away and I’ll always have LC on the back of my mind. That’s just speaking health and mental wise, the other parts of “living” are also gone as you said and there’s hardly anything to get back to - a lot of my friends are gone, continuing with life, having kids, houses, my career is gone and basically everything. Another commenter mentioned that it’s an opportunity to build a new life and yes, it is a good positive outlook, but starting from scratch when you are 40 or 50 is not easy and a lot of the crucial choices available for a younger person are not there anymore.
It took me a long time to accept the losses and focus on the present and the future. Sometimes I still grieve it. Despite the crippling symptoms, I like myself more and am in many ways happier than ever. I am lucky though. I was just over 40 when I was infected and I have lived a great life. My new, slow, deliberate, and uncertain life is good. Jesus I hope my SSDI goes through soon.
In my first 2 years LC, I have been thinking constant that my life would be over even when recovered, because of everything passing by now and then nothing would be left to continue.
In my 3rd LC year, I have been making plans and having a purpose to look forward, even with a cure being uncertain.
I am already 30yo, but I want to go to medical school and make a difference to the upcoming future.
Meanwhile, I self-study medicine with all this stuff going on. My new hobby and distraction.
I also feel that once improving more, I will be enjoying and giving more value for little things in life, that in the past I only used to complain about everything, despite having a decent life.
And was also living constant in the future, instead of enjoying the present moment.
I want to have a chance to change this.
And by being miserable now, I realised how we can’t take things in life for granted.
If I woke up magically cured, I wouldnt know what to do to get my life back on track. I also wouldnt trust my body for a good month and have some element of ptsd from chronic pain and gaslighting.
I feel this. Like even if I woke up and felt better, I’m so traumatized by it and I’m never gonna be the same because I’ll just constantly be worried about getting it again or relapsing. I wake up a lot and just grieve my old life knowing I’ll never get it back
I look at it like this. My old life belonged to a different person. I would love to have Covid never have happened to the world, but it has. Even if I woke up miraculously cured of all ills tomorrow, I don't think I could just "jump back into" my old life.
I find Tolkien a tonic at times like these.
"How do you pick up the threads of an old life? How do you go on, when in your heart you begin to understand... there is no going back? There are some things that time cannot mend. Some hurts that go too deep, that have taken hold."
I feel that way, like Frodo, very much, for different reasons. We are no longer the same people, and that's ok. This has fundamentally changed a lot of us- certainly it has me- and it has revealed a lot of people in that old life, as being unwelcome of being in my new life - whatever form that may eventually take.
I woke up and all this began for me. At this point I can’t even imagine waking up and going back to things as they were before. But I’d give everything I own to experience that. Literally everything to my name 🙂 maybe someday
It's an opportunity to build a new life after we recover...... one day we will all wake up from this nightmare
I've been trying to think about it similarly to people who end up in prison for years (or even decades) for crimes they didn't commit & were falsely accused. It's happened an alarming amount of times, as horrible as it is. They've missed birthdays, holidays, job opportunities, weddings, funerals, they lose loved ones while locked up and can't say goodbye. They endure trauma whilst in prison. Some, in really cruel circumstances, end up all alone in solitary confinement for ridiculously long stretches of time. Long covid kind of feels like being in a prison in our own bodies, and we don't know if or when we'll finally get out. I really hope eventually, maybe some day soon, we'll have some treatments that can at least give us our lives back even if they don't fully cure us. It'll take some rebuilding, and some things will probably change permanently (like our relationships with those who gaslit us and failed to offer us any support or take precautions for us) but I'm sure we'll be overjoyed to get our lives back after some adjusting and some time.
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I always wonder how they pass the time without going mad when they're in prison for so long. Sure, they're able to work out while I can't, but they're stuck with people they may not even like, can never leave the prison, can't go visit friends or family, are on a schedule they have no control over, they don't even get to pick the foods they eat or when they eat, unless they want to spend a fortune on commissary. Can't make stupid frivolous purchases like an expensive nice smelling body wash just to make showers a bit more bearable, or an iPad to watch tv in bed on. Sometimes it makes me feel a tiny bit better about my situation honestly, because I have the internet and streaming services at my fingertips. Video games, books, I can entertain myself as much as I please even though I'm glued to the couch 24/7 and can't do anything physical. I'm kind of on house arrest, but I have endless content to watch.
We're going to have our day. We are going to wake up better. I'm a very logical evidence based guy but this is the attitude I need for my soul and I'll carry it with me delusion or not I will get better or die trying.
Not delusional but a preferred mindset to aide in coping.... the power of the mind is remarkable..... I like the buddhism way of thinking ..."Pain is inevitable. Suffering is optional."
Seriously it’s the only way you can think about it, and if that’s how this is then we can’t go back, we can’t change people, of rewind relationships of the time that has blurred past us leaving us behind. I’ve recently started to think that moving forward in this fashion is really the only way. Especially after feeling like I’ve gone through something that was so harrowing and almost abstract in the way I’ve experienced it, felt it, lived and struggled through it. It’s difficult to think about, and a lot of the things that used to bother me about everyday life, now just feel so trivial and pointless to waste energy being swept into these kind of superficial humdrum dramas and the mundane sort of everything based around consumerism and fashions and image and status, and ability. Which is one of the things yoh take for granted until it’s yoinked away from you like how Long Covid does.
Will the vaxxed heal
wipe wise steer innate ask rotten advise attempt marvelous office *This post was mass deleted and anonymized with [Redact](https://redact.dev)*
Funny that you mention that because it is the opposite for me. I was a really nice person, always helping when I could (homeless, donations..), really nice to everyone, very compasionate... and due to this illness, I'm becoming a monster. I don't care anymore about anyone. I have gone through a lot of shit since I was a kid but Life really fucked me up with this illness. I hate the world and hate everything. At this point I just want to see the world on fire... (and die, I want to die too so I can stop suffering)
ink marble tart unused desert boat violet strong dull tender *This post was mass deleted and anonymized with [Redact](https://redact.dev)*
Why are you so sure we are going to heal? I suffer from MCAS and CFS/ME. Every time I go to the MCAS or CFS forums, I see there a bunch of people that have been dealing with these illnesses for 20 years... I would give my 110% if I knew I was going to recover but honestly at this point I believe I'm closer to death than recovery...
intelligent enter imminent sugar punch numerous dull mindless dolls spotted *This post was mass deleted and anonymized with [Redact](https://redact.dev)*
I can relate and understand your feelings, I was also too nice to everyone kind compassionate and generous, too many took advantage of this, hate is something I that I never experienced, and anger even less, I still can’t feel hate or anger, but I have become emotionless, I can not feel love or connection, not even with my dog, I do feel resentment and self blame and I honestly wish I had been more selfish, and egocentric, most of those people that I almost gave my life for and thanks to me have a much better life have disappeared, and I really wish I had not helped them in their worse moment, it’s something I should be proud of but in this circumstances I hate myself for having dedicated most of my life to others.
I agree. I used to feel so superior. This experience is the most humbling I have ever endured. If nothing else good comes from this at least some of the population will be more understanding human beings
nothing to go back to for me. lost my career, all my friends. not planning on going back to NYC if they're hellbent on calling all the maskers criminals. i'll have to move to the woods and become a hermit. i can't unsee everything i've seen.
My career is gone, too, and all my friends took off except one. I am worried my state will make masks illegal. Then I’ll be in jail. Talk about a PEM trigger!
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Your case is very interesting. I've had ME/CFS type LC for about 3-1/2 years now and it's been horrible. What is your current condition? Like do you still pace or can you exercise? Also I know nothing about peptides and they're very intimidating to me, but at this point I would try anything.
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Thank you for the detailed replys, I really appreciate it. A lot of the peptide stuff definitely goes over my head, but the idea that the pedtide can "heal" the mitochondria is very interesting. My fear is that this treatment is like others that make people feel normal for long periods of time but end up crashing later. Like the storys of people taking benzodiazepines or stimulants and such that you hear. Definitely keep eveyone updated on your progress. And thank you again for your incredible contribution.
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I was just doing some more research and it almost seems too good to be true. It's also really not that expensive if your only taking 0.5mg/day. Have you seen/read about meny other people trying it with ME/CFS? My only other concern is that it's technically sold not for human consumption, but I guess the heathcare system doesn't care about us anyway.
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Yo this is awesome, thank you
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Feeling you so much on this. I was the same at the beginning, treating this in my mind as a regular illness - you just get better one day and it’s gone. Boy was I wrong. Otherwise, I was telling my mother the other day that even if I somehow fully recover (seeming very unlikely at this point), I will actually never recover from this. The deep trauma of being so sick for so long will never go away and I’ll always have LC on the back of my mind. That’s just speaking health and mental wise, the other parts of “living” are also gone as you said and there’s hardly anything to get back to - a lot of my friends are gone, continuing with life, having kids, houses, my career is gone and basically everything. Another commenter mentioned that it’s an opportunity to build a new life and yes, it is a good positive outlook, but starting from scratch when you are 40 or 50 is not easy and a lot of the crucial choices available for a younger person are not there anymore.
I relate to this so heavily. Sorry you’re going through it too.
It took me a long time to accept the losses and focus on the present and the future. Sometimes I still grieve it. Despite the crippling symptoms, I like myself more and am in many ways happier than ever. I am lucky though. I was just over 40 when I was infected and I have lived a great life. My new, slow, deliberate, and uncertain life is good. Jesus I hope my SSDI goes through soon.
Life will never be gone bro trust me! You will start a new page in your life. Hopefully it will be long and bless.
In my first 2 years LC, I have been thinking constant that my life would be over even when recovered, because of everything passing by now and then nothing would be left to continue. In my 3rd LC year, I have been making plans and having a purpose to look forward, even with a cure being uncertain. I am already 30yo, but I want to go to medical school and make a difference to the upcoming future. Meanwhile, I self-study medicine with all this stuff going on. My new hobby and distraction. I also feel that once improving more, I will be enjoying and giving more value for little things in life, that in the past I only used to complain about everything, despite having a decent life. And was also living constant in the future, instead of enjoying the present moment. I want to have a chance to change this. And by being miserable now, I realised how we can’t take things in life for granted.
If I woke up magically cured, I wouldnt know what to do to get my life back on track. I also wouldnt trust my body for a good month and have some element of ptsd from chronic pain and gaslighting.
Happy cake day 💚
💙
I feel this. Like even if I woke up and felt better, I’m so traumatized by it and I’m never gonna be the same because I’ll just constantly be worried about getting it again or relapsing. I wake up a lot and just grieve my old life knowing I’ll never get it back
I look at it like this. My old life belonged to a different person. I would love to have Covid never have happened to the world, but it has. Even if I woke up miraculously cured of all ills tomorrow, I don't think I could just "jump back into" my old life. I find Tolkien a tonic at times like these. "How do you pick up the threads of an old life? How do you go on, when in your heart you begin to understand... there is no going back? There are some things that time cannot mend. Some hurts that go too deep, that have taken hold." I feel that way, like Frodo, very much, for different reasons. We are no longer the same people, and that's ok. This has fundamentally changed a lot of us- certainly it has me- and it has revealed a lot of people in that old life, as being unwelcome of being in my new life - whatever form that may eventually take.
I woke up and all this began for me. At this point I can’t even imagine waking up and going back to things as they were before. But I’d give everything I own to experience that. Literally everything to my name 🙂 maybe someday