7 ms·

Settling in for the long haul

65 points by MaysonL 4y ago

ok_dad 4y ago
Everything takes me way longer now due to a combination of brain fog, tiredness, and depression reducing my effective working time to about 2 hours a day. Unfortunately, US American society is already treating this like agent orange or gulf war syndrome: they think it’s fake or won’t admit it’s real so that millions will have to get by on our bootstraps. Lucky for me I can grind out some code everyday that’s minimally viable do I don’t get fired, but my small company isn’t doing so well, so hopefully I recover in time to job search.
- daneel_w 4y ago
  Curious how similar my situation is to yours. I don't know if I have had covid as I have had no symptoms suggesting so; no reasons prompting a random test. Yet here I am suddenly running on fumes, just barely being able to produce the minimum that my small somewhat struggling employer is asking of me, while hoping that I'll somehow snap out of it soon enough in case they suddenly decide to "let me go".
  - bigDinosaur 4y ago
    As difficult as it is to conclude anything based on a short description online, you just described what is more likely to be classic burnout rather than scary pathology. That said, burnout is really bad and not a minor problem.
    - daneel_w 4y ago
      I've been burned out twice before. This cognitive sluggishness is similar, but not identical. Lately there's nothing particular going on at work that has had a consuming or stressful effect on me, but that doesn't entirely rule it out.
      - bigDinosaur 4y ago
        Make sure you don't have https://en.wikipedia.org/wiki/Boreout https://en.wikipedia.org/wiki/Boreout as well, which I've actually experienced (it led to a lot of resentment and then led to classic burnout). It's always worth ruling out these things because they are more common than the really scary physical issues. That said, always worth getting physically checked out if concerned etc.
        lumost 4y ago
        I swear that Bore-out is an under-discussed topic with remote work. The pursuit of WLB can easily turn into a do nothing job. A significant portion of the population want to describe their job as "exciting" or "fast".
  - ok_dad 4y ago
    I definitely had Covid right before my symptoms. I’ve been burnt out but this is different somehow.
thenerdhead 4y ago
I also have an experience with long hauling. I recovered over 14 months. But can’t be sure it’s a full one. https://jondouglas.dev/long-covid/ https://jondouglas.dev/long-covid/
- deleted 4y ago
  [deleted]
pigtailgirl 4y ago
-- long hauler here - I used to be the smartest person people knew - everyone would always say "wow.. you're so smart" - my memory was extremely good - I could remember most conversations I'd had - how I'd learned the things I knew came with ease - I'd be the one people would always pull into conversations to help problem solve - now - I don't know how to describe it - I know the stuff is still in there - but it's like the map to the knowledge has faded - now I spend a lot of time remembering how to remember - it's been particularly difficult as - for better or worse - I really defined myself as the smart person in the room - I really wish I could get back to how I used to be - I've tried everything I can think of but so far nothing has really helped - to be honest when I first realized what was going on I became suicidal - now I've learned to accept it - however I still hide myself away from everyone --
- kirubakaran 4y ago
  Thanks for sharing that. If you don't mind sharing... did you suffer a lot of sleep deprivation?
  - pigtailgirl 4y ago
    -- in fact quite the opposite - I used to struggle to sleep - often I would sleep 5-6 hours and be just fine - since "recovering" from covid - I can't get enough sleep --
- hnxs 4y ago
  Is this due to long covid?
  - pigtailgirl 4y ago
    -- it started after I was diagnosed with covid the second time - the first time I had covid I was physically quite sick - but mentally - post recovery didn't struggle - about four months later I got covid again - this time my only symptoms were loss of smell/taste and some weakness - however I noticed I gradually started to forget things - it was like the lights got turned down in my mind - nothing came through clearly or quickly anymore - my thinking became a struggle not a joy - this decline lasted about two weeks and then hit the point it's at today - that was seven months ago and I've noticed little to no improvement on my cognitive facets - the weakness/sluggishness I can treat with caffeine tablets (I'd never been into caffeine/coffee perviously) --
ck2 4y ago
The easiest way to explain to outsiders CFS-ME and the versions of long-covid that present with years of chronic fatigue is that you are now instantly 80 years old overnight. You can still barely function, it's just that everything is 100 times harder and slower. The part you can still function is what confuses people who have never been seriously ill and never even experienced post-viral fatigue for a few weeks. And the age reference is apparently right in other ways, many diseases seem to leave long-term if not permanent DNA methylation problems which is exactly like "old age" https://clinicalepigeneticsjournal.biomedcentral.com/articles/10.1186/s13148-022-01313-8 https://clinicalepigeneticsjournal.biomedcentral.com/article... There's no cure for this because it would be like curing aging.
cjbgkagh 4y ago
I have hEDS which for me comes with ME/CFS which a very similar condition to Long Covid. It is something I’ve had to deal with my whole life. Despite what doctors may say there are meds that help a lot. Low Dose Naltrexone (LDN) being the most likely to help brain fog, then meds for dysautonomia beta blockers etc. And other neurotransmitter meds to get going again. Doesn’t work for everyone but does work for many. hEDS affects a decent percentage of the population, can get quite debilitating, has been known about medically since Hippocrates, and yet according to doctors still doesn’t have a treatment. So I would advise against waiting for doctors to figure this out.
fny 4y ago
How is everyone so sure 12 month+ symptoms are due to COVID-19? Yes, I accept 3-4 month coughs and brain fog can be attributed (many papers on this, it is also well documented with the flu). Yes, I accept chronic issues evolving from pre-existing conditions and severe illness. However, we had 100M people in the US alone be infected with a virus in a two year span. Many people develop chronic fatigue, mental illness, and hosts of othe syndromes in normal times often without clear cause. These symptoms are at times written off as "made up" as well. It's extremely human to attribute the origin of inexplicable disease to a foreign agent like COVID just as much as people often search for the origins of their suffering in food, relationships, and other facets of life, but these are often not causal. To complicate matters further, COVID presented tremendous stressors beyond the illness itself: fear of COVID, lockdowns, social isolation, disruption in work/schooling, social pressures around reopening and beliefs, inflation. People died. Routines were disrupted. Lives were upended. The environment these past two years were a breeding ground for affective disorders. I only bring this up because a decade ago my mother began to suffer from fatigue and aches that to this day are a complete mystery. She was diagnosed with fibromyalgia which affects 2-4% of the population. Had this happened during COVID, she would have sworn on her life her symptoms were due to COVID. Even I would have agreed. Again, the scale and immediacy of COVID is wild. The entire world got sick at the same time. That's at least 600M people globally, 100M of those in the US. This means 1 in 100K and 1 in 1M events will happen. Now blend that with the natural incidence of every neurological and mental disorder... yikes.
- rcthompson 4y ago
  > How is everyone so sure 12 month+ symptoms are due to COVID-19? Our lab at Mount Sinai has linked gene expression patterns observed during acute SARS-CoV-2 infection with the subsequent emergence of long COVID symptoms that were still present a year or more after hospital discharge. The final paper is still under review, but you can read the preprint [1]. Multiple published papers have also reported similar associations between acute COVID and long COVID [2],[3] (these were published after the preprint was posted, but they are cited in the latest draft currently under review). More generally, long COVID is not "one in a million" (and it's not 500k individual "one in a million" events). Very very roughly, somewhere around 50% of people with symptomatic COVID report some kind of long COVID symptom, though not all of those last for 12 months [4]. [1]: https://www.medrxiv.org/content/10.1101/2021.10.04.21264434v1 https://www.medrxiv.org/content/10.1101/2021.10.04.21264434v... [2]: https://www.nature.com/articles/s41467-021-27797-1 https://www.nature.com/articles/s41467-021-27797-1 [3]: https://www.sciencedirect.com/science/article/pii/S0092867422000721 https://www.sciencedirect.com/science/article/pii/S009286742... [4]: https://www.science.org/doi/10.1126/science.abm8108 https://www.science.org/doi/10.1126/science.abm8108
helloworld11 4y ago
Anecdote, sure but I've had COVID 3 times so far across at least two strains (Delta, Omicron and maybe a newer mutation of Omicron) and no, no long term symptoms that I can identify. Likewise for at LEAST a couple dozen friends and acquaintances of mine. I'm sure that long COVID does exist, but I hesitate to give so many claims credence when they could easily also be the result of ambiguous things like general hypochondria, misatribution and sickness fetishism, all three of which absolutely exist too.
- squidsoup 4y ago
  It astounds me that someone could read this beautiful elegiac piece of writing and respond with something so completely devoid of empathy.
  - helloworld11 4y ago
    I didn't deny that long covid exists and I don't claim this writer is lying, but sentimentality aside, like I said above, all of the possible alternative causes exist too and why deny them for the sake of being polite?
  - ikiris 4y ago
    Its kind of amazing how much you can tell about a person sometimes from one sentence.
  - ck2 4y ago
    Something I wasn't expecting in all the comments on this post is the steady drone of denial, that long-covid might not be real, I came back the next day and sure enough it's all over the thread. Blows my mind that in this day and age people are still doing the "didn't happen to me, or I imagine I had/got over it in a week, so isn't a real problem for anyone else" I'd expect it on facebook/twitter but not on HN where the average coder/hacker is a bit more educated. But maybe the problem is lack of world experience, not grasping the massive difference in genetics between people, the different kinds of environment exposure. Definitely not wishing it on anyone but wow are people in for a surprise if it happens to them, then they'll "get it" but it will be too late. It's probably why the long-covid forums are full of suicides and suicidal declarations, they trivialized it until it happened to them and then feel boxed in to their own egos.
drewcoo 4y ago
Is a rambling lack of clarity a ME/CFS symptom? Because a decent (human) editor could clear that up.
- bluehorseray 4y ago
  Yep it more or less is I believe. Post viral brain fog definitely makes it difficult to express yourself as clearly as you may like

65 points by MaysonL 4y ago

Everything takes me way longer now due to a combination of brain fog, tiredness, and depression reducing my effective working time to about 2 hours a day. Unfortunately, US American society is already treating this like agent orange or gulf war syndrome: they think it’s fake or won’t admit it’s real so that millions will have to get by on our bootstraps. Lucky for me I can grind out some code everyday that’s minimally viable do I don’t get fired, but my small company isn’t doing so well, so hopefully I recover in time to job search.

daneel_w 4y ago
Curious how similar my situation is to yours. I don't know if I have had covid as I have had no symptoms suggesting so; no reasons prompting a random test. Yet here I am suddenly running on fumes, just barely being able to produce the minimum that my small somewhat struggling employer is asking of me, while hoping that I'll somehow snap out of it soon enough in case they suddenly decide to "let me go".
- bigDinosaur 4y ago
  As difficult as it is to conclude anything based on a short description online, you just described what is more likely to be classic burnout rather than scary pathology. That said, burnout is really bad and not a minor problem.
  - daneel_w 4y ago
    I've been burned out twice before. This cognitive sluggishness is similar, but not identical. Lately there's nothing particular going on at work that has had a consuming or stressful effect on me, but that doesn't entirely rule it out.
    - bigDinosaur 4y ago
      Make sure you don't have https://en.wikipedia.org/wiki/Boreout https://en.wikipedia.org/wiki/Boreout as well, which I've actually experienced (it led to a lot of resentment and then led to classic burnout). It's always worth ruling out these things because they are more common than the really scary physical issues. That said, always worth getting physically checked out if concerned etc.
      - lumost 4y ago
        I swear that Bore-out is an under-discussed topic with remote work. The pursuit of WLB can easily turn into a do nothing job. A significant portion of the population want to describe their job as "exciting" or "fast".
- ok_dad 4y ago
  I definitely had Covid right before my symptoms. I’ve been burnt out but this is different somehow.

thenerdhead 4y ago

I also have an experience with long hauling. I recovered over 14 months. But can’t be sure it’s a full one. https://jondouglas.dev/long-covid/ https://jondouglas.dev/long-covid/

deleted 4y ago
[deleted]

pigtailgirl 4y ago

-- long hauler here - I used to be the smartest person people knew - everyone would always say "wow.. you're so smart" - my memory was extremely good - I could remember most conversations I'd had - how I'd learned the things I knew came with ease - I'd be the one people would always pull into conversations to help problem solve - now - I don't know how to describe it - I know the stuff is still in there - but it's like the map to the knowledge has faded - now I spend a lot of time remembering how to remember - it's been particularly difficult as - for better or worse - I really defined myself as the smart person in the room - I really wish I could get back to how I used to be - I've tried everything I can think of but so far nothing has really helped - to be honest when I first realized what was going on I became suicidal - now I've learned to accept it - however I still hide myself away from everyone --

kirubakaran 4y ago
Thanks for sharing that. If you don't mind sharing... did you suffer a lot of sleep deprivation?
- pigtailgirl 4y ago
  -- in fact quite the opposite - I used to struggle to sleep - often I would sleep 5-6 hours and be just fine - since "recovering" from covid - I can't get enough sleep --
hnxs 4y ago
Is this due to long covid?
- pigtailgirl 4y ago
  -- it started after I was diagnosed with covid the second time - the first time I had covid I was physically quite sick - but mentally - post recovery didn't struggle - about four months later I got covid again - this time my only symptoms were loss of smell/taste and some weakness - however I noticed I gradually started to forget things - it was like the lights got turned down in my mind - nothing came through clearly or quickly anymore - my thinking became a struggle not a joy - this decline lasted about two weeks and then hit the point it's at today - that was seven months ago and I've noticed little to no improvement on my cognitive facets - the weakness/sluggishness I can treat with caffeine tablets (I'd never been into caffeine/coffee perviously) --

ck2 4y ago

The easiest way to explain to outsiders CFS-ME and the versions of long-covid that present with years of chronic fatigue is that you are now instantly 80 years old overnight. You can still barely function, it's just that everything is 100 times harder and slower. The part you can still function is what confuses people who have never been seriously ill and never even experienced post-viral fatigue for a few weeks. And the age reference is apparently right in other ways, many diseases seem to leave long-term if not permanent DNA methylation problems which is exactly like "old age" https://clinicalepigeneticsjournal.biomedcentral.com/articles/10.1186/s13148-022-01313-8 https://clinicalepigeneticsjournal.biomedcentral.com/article... There's no cure for this because it would be like curing aging.

cjbgkagh 4y ago

I have hEDS which for me comes with ME/CFS which a very similar condition to Long Covid. It is something I’ve had to deal with my whole life. Despite what doctors may say there are meds that help a lot. Low Dose Naltrexone (LDN) being the most likely to help brain fog, then meds for dysautonomia beta blockers etc. And other neurotransmitter meds to get going again. Doesn’t work for everyone but does work for many. hEDS affects a decent percentage of the population, can get quite debilitating, has been known about medically since Hippocrates, and yet according to doctors still doesn’t have a treatment. So I would advise against waiting for doctors to figure this out.

fny 4y ago

How is everyone so sure 12 month+ symptoms are due to COVID-19? Yes, I accept 3-4 month coughs and brain fog can be attributed (many papers on this, it is also well documented with the flu). Yes, I accept chronic issues evolving from pre-existing conditions and severe illness. However, we had 100M people in the US alone be infected with a virus in a two year span. Many people develop chronic fatigue, mental illness, and hosts of othe syndromes in normal times often without clear cause. These symptoms are at times written off as "made up" as well. It's extremely human to attribute the origin of inexplicable disease to a foreign agent like COVID just as much as people often search for the origins of their suffering in food, relationships, and other facets of life, but these are often not causal. To complicate matters further, COVID presented tremendous stressors beyond the illness itself: fear of COVID, lockdowns, social isolation, disruption in work/schooling, social pressures around reopening and beliefs, inflation. People died. Routines were disrupted. Lives were upended. The environment these past two years were a breeding ground for affective disorders. I only bring this up because a decade ago my mother began to suffer from fatigue and aches that to this day are a complete mystery. She was diagnosed with fibromyalgia which affects 2-4% of the population. Had this happened during COVID, she would have sworn on her life her symptoms were due to COVID. Even I would have agreed. Again, the scale and immediacy of COVID is wild. The entire world got sick at the same time. That's at least 600M people globally, 100M of those in the US. This means 1 in 100K and 1 in 1M events will happen. Now blend that with the natural incidence of every neurological and mental disorder... yikes.

rcthompson 4y ago
> How is everyone so sure 12 month+ symptoms are due to COVID-19? Our lab at Mount Sinai has linked gene expression patterns observed during acute SARS-CoV-2 infection with the subsequent emergence of long COVID symptoms that were still present a year or more after hospital discharge. The final paper is still under review, but you can read the preprint [1]. Multiple published papers have also reported similar associations between acute COVID and long COVID [2],[3] (these were published after the preprint was posted, but they are cited in the latest draft currently under review). More generally, long COVID is not "one in a million" (and it's not 500k individual "one in a million" events). Very very roughly, somewhere around 50% of people with symptomatic COVID report some kind of long COVID symptom, though not all of those last for 12 months [4]. [1]: https://www.medrxiv.org/content/10.1101/2021.10.04.21264434v1 https://www.medrxiv.org/content/10.1101/2021.10.04.21264434v... [2]: https://www.nature.com/articles/s41467-021-27797-1 https://www.nature.com/articles/s41467-021-27797-1 [3]: https://www.sciencedirect.com/science/article/pii/S0092867422000721 https://www.sciencedirect.com/science/article/pii/S009286742... [4]: https://www.science.org/doi/10.1126/science.abm8108 https://www.science.org/doi/10.1126/science.abm8108

helloworld11 4y ago

Anecdote, sure but I've had COVID 3 times so far across at least two strains (Delta, Omicron and maybe a newer mutation of Omicron) and no, no long term symptoms that I can identify. Likewise for at LEAST a couple dozen friends and acquaintances of mine. I'm sure that long COVID does exist, but I hesitate to give so many claims credence when they could easily also be the result of ambiguous things like general hypochondria, misatribution and sickness fetishism, all three of which absolutely exist too.

squidsoup 4y ago
It astounds me that someone could read this beautiful elegiac piece of writing and respond with something so completely devoid of empathy.
- helloworld11 4y ago
  I didn't deny that long covid exists and I don't claim this writer is lying, but sentimentality aside, like I said above, all of the possible alternative causes exist too and why deny them for the sake of being polite?
- ikiris 4y ago
  Its kind of amazing how much you can tell about a person sometimes from one sentence.
- ck2 4y ago
  Something I wasn't expecting in all the comments on this post is the steady drone of denial, that long-covid might not be real, I came back the next day and sure enough it's all over the thread. Blows my mind that in this day and age people are still doing the "didn't happen to me, or I imagine I had/got over it in a week, so isn't a real problem for anyone else" I'd expect it on facebook/twitter but not on HN where the average coder/hacker is a bit more educated. But maybe the problem is lack of world experience, not grasping the massive difference in genetics between people, the different kinds of environment exposure. Definitely not wishing it on anyone but wow are people in for a surprise if it happens to them, then they'll "get it" but it will be too late. It's probably why the long-covid forums are full of suicides and suicidal declarations, they trivialized it until it happened to them and then feel boxed in to their own egos.

drewcoo 4y ago

Is a rambling lack of clarity a ME/CFS symptom? Because a decent (human) editor could clear that up.

bluehorseray 4y ago
Yep it more or less is I believe. Post viral brain fog definitely makes it difficult to express yourself as clearly as you may like