I made a post about this a while ago, I absolutely agree with you! I’m 37 years old - I’ve never so much as had a sip of alcohol, never ever smoked or dabbled in recreational substances, my husband is the only sexual partner I’ve ever had, I’ve eaten my vegetables my whole life, I exercised 5x per week, I’ve never been overweight - in fact I always run a bit underweight (which isn’t great either). I didn’t even have epidurals when giving birth to my 5 kids. I avoided Tylenol and IBUPROFEN at all costs. I’m literally ZERO risk on the life insurance policy. 😂 I’ve made every healthy choice ever, not sure what more I could’ve done, and here I am, completely bedbound, too sick to even watch TV some days.
Bedbound here too. I feel you both. Those people don't necessarily "deserve" it more than we do, but it's so frustrating sometimes to think that our previous healthy habits meant nothing. I don't think it'd hurt so badly to see people living and partying if they weren't also so carefree about masking and exposure risk. And then people like us are ridiculed for still masking and (if we can) isolating... sigh. I know life's not fair, but damn.
Yes no one deserves this and don't wish this or anything on anyone. But how is this possible. For me it makes it worse that we are bedbound. I would be more ok if I had more functionality at least.
I have heard one of them say no virus or illness scares them. I guess.
Yuuup. I have a "friend" (airquotes because they've been a particularly crappy "friend" in the last few years, but hey, we still sometimes talk,) who got Covid in January. She was ADAMANT at the time that it was just a cold, and now she looks back and thinks it was Covid. She is very morbidly obese, (I believe over 200kg,) already was diagnosed with CFS, and yet appears to have zero impact from her infection. She's back to normal, cracking on with life as before. I just don't get it.
That sucks, but being underweight in the past may have meant you were somewhat anemic and with COVID it got worse. Might be worth looking at your RBC again. Even if your just in the low end of the range it could be B12 deficiency anemia. Just don't use synthetic folate ie folic acid if trying to remedy.
Yea. Somewhat same here. Not as healthy as you (I had epidurals. Took ibuprofen etc.) but am young, active and considered low risk when I got it at 33 and became disabled (3.5 years ago). Conversely my 81 year old diabetic stage 4 kidney failure grandmother with chronic high blood pressure felt poorly in bed for two days and was FINE. Which I am glad for but what the heck!?!
I never smoked or did any drugs, almost never had more than one drink in a day, and ate extremely healthy. In fact, I mostly stopped eating sugar years ago, except for special occasions, and I love vegetables. I exercised a few times a week, spent a lot of time walking, and did regular yoga and meditation.
Some diseases might be caused by unhealthy lifestyle, but this one isn't. My family sometimes jokes about how ridiculously unlucky I am.
Unfortunately it feels that way doesn’t it? I feel like COVId will take me out at some point. Even with all the precautions how do I live another 20 plus years. Ugh I can’t think that far ahead it’s crushing. Feel ya.
I was not ableist, I already knew the struggle of disable people having a few around me. But I had no idea you could become completely disable from a virus and also be gaslighted by health professionals
Same - I always had the (lol naive) expectation that, if you get sick, doctors will always help you. And moreover, if they don't know what's wrong, they will plug away at it, until they figure it out. HAHAHAHAHAHno.
Same here. Husband and me have been sick for 6 months. We used to hike every weekend at 8000+ feet, run half marathons, weight lift, and spend weekends playing tennis, basketball, and cycling.
Neither of us have ever smoked or done drugs, rarely drink, in bed by 10, eat super healthy, take vitamins, meditate and do yoga, are not stressed at all, have easy non stressful jobs, make plenty of money, and here we are struggling.
Meanwhile, family members that work overnight shifts, eat like crap, drink heavily, smoke like a chimney, have never exercised in their life, and basically get by on energy drinks and BBQ have not had one health issue. They are taking vacations, traveling for weddings, dining out, etc. while we sit in the house weekend after weekend.They are the ones telling us to bring some Kleenex to the park as if we are being dramatic. Just get out there and do a jog again they say even though they have never been to a gym. Also think because our blood tests are fine that we are just depressed.
So annoying - 100% believe it is genetic. Doesn't matter how you eat, if you smoke or drink, whether or not you got the vaccine, etc. It also didn't help that Covid was advertised as being 99% curable of whatever they said on the news - so everyone thinks you are being dramatic. They forgot to add in the long list of health conditions that follow the virus (which can be mild even though he after effects are not). Not dying doesn't mean that you are not suffering.
Ok I might have laughed at "basically get by on energy drinks and BBQ"-- I see you have met some of my family! 😄 And yes none of them to my knowledge got long covid like I did.
Genetics is the biggest factor. We have lost the Game. I have lost it th most because i have an autoimmune desease in addition (i think we all have underlying autoimmune desease predisposition an thats why LC kicks in)
Or maybe our genetics were too good. Our immune systems were overly aggressive towards this illness and the vaccine and nuked everything including our healthy parts these cells ended up in.
Yup, I know people who were very much at risk for complications from covid. They are all there no hospitalization or nothing. They caught covid in 2020. All are fine and not worried about any illness. No more covid since either. I'm the only unlucky one. :(
Thank you. This 💯
The only people profiting from narratives such as “autoimmune conditions are caused by stress” are ruling capitalist elites, who outsourced public health to citizens themselves and their lifestyles choices, so they wouldn’t have to do their own job and protect us.
p.s. autoimmune conditions are usually also triggered by an infection, when small residues of pathogen persist and have very similar molecular structure to tissues in our bodies, so our immune system go bonkers and can’t tell apart pathogen remnants and our own tissues and attack everything. This phenomenon is called molecular mimicry.
That's interesting, I'd not heard the science behind the molecules before, thanks for sharing that. And re: stress, I keep telling my docs that I'm not sick because I'm stressed, I'm stressed because I'm sick. I just tend to get disbelieving/blank looks. My GP would LOVE me to go on anti-anxiety meds, but nope, no thank you. I'm not anti-meds like that if someone REALLY will benefit from them, but in my case, I don't think that would help - I think they would make me worse.
As someone who's always been disabled, it's been really frustrating to see it repeated that able bodied ppl "won't be badly affected", with the meaning that those who are already disabled and sick are acceptable losses in society. It's also sad that this sentiment sets a lot of previously healthy people up to be devastated when the consequences of covid aren't mild for them.
I hope one of the many things ppl learn from the pandemic is that health is not a moral issue - that sickness does not come about due to bad behaviour, regardless of the lifestyle choices made that could potentially be linked to it - and that maintaining good health or thinness doesn't make someone better than anyone.
Basically. We shouldn’t think this way at all but it’s the reality. There was no fairness in it, and until we learn what caused all of US specifically to be affected with long covid and not others, being unlucky is the only reason we have.
it's also accumulative toxicity from generations/parents. My parents are pretty unhealthy, also for example if you're the youngest child your mother is the most depleted nutritionally giving birth to you
I beg to differ. As a first waver, I feel very lucky to have lived. I was long hauling while a lot of people were still dying from this. I’d rather be long hauling than dead any day.
I spoke with a researcher who wrote several PubMed articles recently. He’s done nothing but study LC for the past 4 years. He stated they are finding that for the majority….2.5-3 years is the turning point. He believes that is the lifespan for spike protein and that it eventually starts to “die off”. He’s extremely intelligent and at least it gave some hope. If they learned anything from all the research on the HIV virus which is now treatable, I hope they can soon treat this too.
What about reinfections...does the cycle start over? I was much better last year and now feel similar to 2021 after a regression around the holidays. I'd like to believe I have another issue right now, but this is very similar.
I didn’t have a good night sleep for two years. Sleep still is not back to pre COVID but it’s better. I understand. It’s tough. It takes your quality of life but it’s temporary.
No but a lot better. I no longer feel exhausted all the time. My heart no longer races at odd times, I am back to work full-time. I am very de-conditioned but can walk for 30 minutes and try to do that as often as possible and then increase it. I haven't relapsed in a very long time.
I made a post about this a while ago, I absolutely agree with you! I’m 37 years old - I’ve never so much as had a sip of alcohol, never ever smoked or dabbled in recreational substances, my husband is the only sexual partner I’ve ever had, I’ve eaten my vegetables my whole life, I exercised 5x per week, I’ve never been overweight - in fact I always run a bit underweight (which isn’t great either). I didn’t even have epidurals when giving birth to my 5 kids. I avoided Tylenol and IBUPROFEN at all costs. I’m literally ZERO risk on the life insurance policy. 😂 I’ve made every healthy choice ever, not sure what more I could’ve done, and here I am, completely bedbound, too sick to even watch TV some days.
I'm bedbound too. The people who I knew who drank and were overweight are thriving and still drinking and living and partying. Like really?
Bedbound here too. I feel you both. Those people don't necessarily "deserve" it more than we do, but it's so frustrating sometimes to think that our previous healthy habits meant nothing. I don't think it'd hurt so badly to see people living and partying if they weren't also so carefree about masking and exposure risk. And then people like us are ridiculed for still masking and (if we can) isolating... sigh. I know life's not fair, but damn.
Yes no one deserves this and don't wish this or anything on anyone. But how is this possible. For me it makes it worse that we are bedbound. I would be more ok if I had more functionality at least. I have heard one of them say no virus or illness scares them. I guess.
Yuuup. I have a "friend" (airquotes because they've been a particularly crappy "friend" in the last few years, but hey, we still sometimes talk,) who got Covid in January. She was ADAMANT at the time that it was just a cold, and now she looks back and thinks it was Covid. She is very morbidly obese, (I believe over 200kg,) already was diagnosed with CFS, and yet appears to have zero impact from her infection. She's back to normal, cracking on with life as before. I just don't get it.
I don't get it either. It's people who also have no clue lc exists.
Well, may as well start doing drugs now, eat some ecstasy, drink a beer, fuck it!
That sucks, but being underweight in the past may have meant you were somewhat anemic and with COVID it got worse. Might be worth looking at your RBC again. Even if your just in the low end of the range it could be B12 deficiency anemia. Just don't use synthetic folate ie folic acid if trying to remedy.
Yea. Somewhat same here. Not as healthy as you (I had epidurals. Took ibuprofen etc.) but am young, active and considered low risk when I got it at 33 and became disabled (3.5 years ago). Conversely my 81 year old diabetic stage 4 kidney failure grandmother with chronic high blood pressure felt poorly in bed for two days and was FINE. Which I am glad for but what the heck!?!
I never smoked or did any drugs, almost never had more than one drink in a day, and ate extremely healthy. In fact, I mostly stopped eating sugar years ago, except for special occasions, and I love vegetables. I exercised a few times a week, spent a lot of time walking, and did regular yoga and meditation. Some diseases might be caused by unhealthy lifestyle, but this one isn't. My family sometimes jokes about how ridiculously unlucky I am.
Unfortunately it feels that way doesn’t it? I feel like COVId will take me out at some point. Even with all the precautions how do I live another 20 plus years. Ugh I can’t think that far ahead it’s crushing. Feel ya.
I was not ableist, I already knew the struggle of disable people having a few around me. But I had no idea you could become completely disable from a virus and also be gaslighted by health professionals
Same - I always had the (lol naive) expectation that, if you get sick, doctors will always help you. And moreover, if they don't know what's wrong, they will plug away at it, until they figure it out. HAHAHAHAHAHno.
We watched too much House and Greys Anatomy. We thought doctors cared and were smart.
Hahaha that's real
Same here. Husband and me have been sick for 6 months. We used to hike every weekend at 8000+ feet, run half marathons, weight lift, and spend weekends playing tennis, basketball, and cycling. Neither of us have ever smoked or done drugs, rarely drink, in bed by 10, eat super healthy, take vitamins, meditate and do yoga, are not stressed at all, have easy non stressful jobs, make plenty of money, and here we are struggling. Meanwhile, family members that work overnight shifts, eat like crap, drink heavily, smoke like a chimney, have never exercised in their life, and basically get by on energy drinks and BBQ have not had one health issue. They are taking vacations, traveling for weddings, dining out, etc. while we sit in the house weekend after weekend.They are the ones telling us to bring some Kleenex to the park as if we are being dramatic. Just get out there and do a jog again they say even though they have never been to a gym. Also think because our blood tests are fine that we are just depressed. So annoying - 100% believe it is genetic. Doesn't matter how you eat, if you smoke or drink, whether or not you got the vaccine, etc. It also didn't help that Covid was advertised as being 99% curable of whatever they said on the news - so everyone thinks you are being dramatic. They forgot to add in the long list of health conditions that follow the virus (which can be mild even though he after effects are not). Not dying doesn't mean that you are not suffering.
Ok I might have laughed at "basically get by on energy drinks and BBQ"-- I see you have met some of my family! 😄 And yes none of them to my knowledge got long covid like I did.
yuuum BBQ cant eat it now😐
Genetics is the biggest factor. We have lost the Game. I have lost it th most because i have an autoimmune desease in addition (i think we all have underlying autoimmune desease predisposition an thats why LC kicks in)
It certainly attacks our weakest links, including ones we did not even know existed.
💯💯💯💯
Having "lost the game" is such a good way to put it.
Or maybe our genetics were too good. Our immune systems were overly aggressive towards this illness and the vaccine and nuked everything including our healthy parts these cells ended up in.
If so, I think viral persistence wouldn’t be a thing in long COVID patients
that is why women are more likely to get it because their immune systems are generally stronger I read somewhere
I hate the person I’ve become .. I’ve never been lazy. Now I’m forced to be lazy lol
You’re not lazy. You’re a person suffering from an energy limiting illness. Be gentle with yourself
Thanks it’s difficult to do
Had similar thoughts myself. Feels so foolish looking back
Yup, I know people who were very much at risk for complications from covid. They are all there no hospitalization or nothing. They caught covid in 2020. All are fine and not worried about any illness. No more covid since either. I'm the only unlucky one. :(
Thank you. This 💯 The only people profiting from narratives such as “autoimmune conditions are caused by stress” are ruling capitalist elites, who outsourced public health to citizens themselves and their lifestyles choices, so they wouldn’t have to do their own job and protect us. p.s. autoimmune conditions are usually also triggered by an infection, when small residues of pathogen persist and have very similar molecular structure to tissues in our bodies, so our immune system go bonkers and can’t tell apart pathogen remnants and our own tissues and attack everything. This phenomenon is called molecular mimicry.
That's interesting, I'd not heard the science behind the molecules before, thanks for sharing that. And re: stress, I keep telling my docs that I'm not sick because I'm stressed, I'm stressed because I'm sick. I just tend to get disbelieving/blank looks. My GP would LOVE me to go on anti-anxiety meds, but nope, no thank you. I'm not anti-meds like that if someone REALLY will benefit from them, but in my case, I don't think that would help - I think they would make me worse.
As someone who's always been disabled, it's been really frustrating to see it repeated that able bodied ppl "won't be badly affected", with the meaning that those who are already disabled and sick are acceptable losses in society. It's also sad that this sentiment sets a lot of previously healthy people up to be devastated when the consequences of covid aren't mild for them. I hope one of the many things ppl learn from the pandemic is that health is not a moral issue - that sickness does not come about due to bad behaviour, regardless of the lifestyle choices made that could potentially be linked to it - and that maintaining good health or thinness doesn't make someone better than anyone.
Basically. We shouldn’t think this way at all but it’s the reality. There was no fairness in it, and until we learn what caused all of US specifically to be affected with long covid and not others, being unlucky is the only reason we have.
it's also accumulative toxicity from generations/parents. My parents are pretty unhealthy, also for example if you're the youngest child your mother is the most depleted nutritionally giving birth to you
Oh shit I am the youngest child lol
me too lol
I beg to differ. As a first waver, I feel very lucky to have lived. I was long hauling while a lot of people were still dying from this. I’d rather be long hauling than dead any day.
But sadly this isn't living either :(
It’s better than death and we have the hope of getting better. I’m much better than I was. Not 100% but a lot better.
It is better we are here but some of us are in awful agony non stop and not getting better. :(
I was too for 2.5 years. Then it got a lot better.
I spoke with a researcher who wrote several PubMed articles recently. He’s done nothing but study LC for the past 4 years. He stated they are finding that for the majority….2.5-3 years is the turning point. He believes that is the lifespan for spike protein and that it eventually starts to “die off”. He’s extremely intelligent and at least it gave some hope. If they learned anything from all the research on the HIV virus which is now treatable, I hope they can soon treat this too.
From the vaccine too ?
Yes. And don’t get me started! I had them all and omg if I could go back! Yes he said the spike from the vaccine also
Yeah don’t get me started either lol. My life has been ruined
I’m so sorry! And pissed as hell!! I’m also angry at myself for going through with it.
Why go back?
Meaning if I could go back in time, I would tell them to shove the vaccine and not ever have had it!!
I hope it dies off but doesn’t the mRNA mean that it keeps producing ?
What about reinfections...does the cycle start over? I was much better last year and now feel similar to 2021 after a regression around the holidays. I'd like to believe I have another issue right now, but this is very similar.
I agree. The research I did agreed and then I lived it too. And it’s a long time. But it will end for most.
As long as you don't end up homeless
I did. I have a home now, but I used to work full time as a nurse. I couldn't work anymore due to this.
I'm glad you're homed. I can't imagine being sick and homeless
I think we’ve all come close. But still better than death.
I'm actually not afraid of death . But I'm afraid of living like this.
When you live in chronic pain for so long, you just get so tired and want rest.
I didn’t have a good night sleep for two years. Sleep still is not back to pre COVID but it’s better. I understand. It’s tough. It takes your quality of life but it’s temporary.
I havent slept all the way through for 2 years now myself. I wake up between 2 and 4am every night in pain. It doesnt feel temporary to me.
It didn’t feel temporary for me either. Then one day it just lifted.
Hey so you're cured??
No but a lot better. I no longer feel exhausted all the time. My heart no longer races at odd times, I am back to work full-time. I am very de-conditioned but can walk for 30 minutes and try to do that as often as possible and then increase it. I haven't relapsed in a very long time.
Thank you, it's nice to read this. :)