By sharing the info from your trackers, you’ve given everyone who reads this a much clearer understanding of what you and other long Covid-sufferers are going through. I knew it was bad, but seeing the data made my jaw drop. I’m so sorry this is happening to you.
It’s funny (not funny) - I was reading your section on trackers and was thinking I’d comment that after you learn your body’s rhythms through such tools, take them all off and stop watching your body like a hawk. This just keeps your brain (and hence, your nervous system) on high alert. I used the Visible armband and my FitBit for a good few months toward the end of 2023 and I learned a lot. I had been way overdoing things before I had these trackers. The trackers helped me get into a better window of energy use that I have been able to sustain since (with a few slip ups here and there). I’ve made solid gains in the last two years, and I attribute that to pacing and working on keeping my nervous system in a state of calm and joy. I watched a ton of recovery videos on Raelan Agle’s YouTube channel too. That kept my brain hopeful, which was a big help too. Good luck with everything! I hope you see improvements in 2025.
I tried apps etc but found thinking about those used energy too, I find listening to my body works better, it takes time to realise what takes more energy, sometimes things you wouldn't expect, so many different types of energy drain. I'm finding socialising (even gentle and brief) takes far more energy than I had thought, it has changed in the last year. (I've been ill for many years, but bad flare up this past 15months) Reading is sometimes too much, sometimes too much sound or light. It does all vary. Rest more than you think you need would be my advice to gradually improve your baseline. This flare up has been a long slog but I'm getting little glimpses of improvement now! Wishing you gentle rest and improvement x
I’ve also noticed that re: socializing taking more energy than i would have guessed. It’s a real pain, because that’s high on the list of things I’d like to do more of
Once again I applaud your honesty and willingness to share deeply personal insights. Hoping 2025 brings some relief and new approaches to healing. Btw sent 3 gift subscriptions to friends! Take care ❤️
Covid is a permanent disability. Each infection does incredible amounts of damage to your vascular and immune systems. Plus everything else. I've got one friend with holes in her lungs and "ground glass opacity" elsewhere. She used to be a rock climber. Now she's on oxygen and can barely walk across her livingroom. Another with MRI visible brain damage from Covid. She hasn't been able to taste or smell anything for 3 years. A pilot I know has had it 5 times, twice severe, and his wife finally called the FAA and pulled his ticket because he's so messed up he can't read a menu anymore, let alone a checklist for operating aircraft.
If people think masks are somehow worse than all that, then we need to seriously re-examine our decisionmaking paradigms and priorities. Because something is very, very wrong.
I don’t blame anyone for being ableist. It’s at the root of mercantilism which is at the root of colonialism which is at the root of capitalism.
I have friends and family who are disabled, as is my son. I always assumed I would get long covid due to some fairly benign autoimmune conditions. Plus, 2 of my cousins died from covid. Covid killed Black Americans at a disproportionate higher rate than white people. I think that African Americans and Native Americans have taken covid much more seriously cause almost everyone was touched by someone who died.
The one case of covid that I have had, which my spouse gave me, gave me long covid.
Twitter only has right wing nuts on it. Don’t use it. Delete your account like most of us have.
Did you see the brigham hospitals ai report that they think 25% of their patients have undiagnosed long covid.
I think that one of the worst effects of long covid is the destruction of our ability to make serotonin. I think people are angrier due to this. They don’t know why they are angry or depressed- but it is likely covid. School shootings have doubled since 2018. Doubled.
And the other thing that breaks me is the maternal deaths. So many. So many become septic. And die.
Sepsis is on the increase, as is every disease related to our immune system- which is everything. Even our muscles use our immune system.
Well- Not sure if we connected on reddit. But i use the name humanist 2020 over there.
Reach out anytime.
I have become wiser after 60 yrs…and enjoy being an Auntie to anyone who wants an Auntie.
I’m sorry that some of Covid conscious community took their anger out on you. It’s not right. And kind of lateral ableism.
You’re one person and really this has been the Biden Administration and media’s fault.
Biden did everything that Trump wanted to do. He didn’t keep his campaign promise of reducing deaths. He just stopped testing and relied on vaccines that quickly became infective at stopping transmission
We could have had clean indoor air and seized the opportunity for expanding the safety net, but instead, our politicians chose the economy. Which long-term won’t be doing well when the majority of people are disabled by Covid
I’m immune compromised, and I was safe until 2022 when mass infection was chosen as the strategy. Flimsy little cloth masks kept me safe while everyone was also masking around me.
Then I caught COVID outdoors Fall 2022 from a neighbor. No place has been safe for me since. And it’s not the life I wanted.
I was already disabled, and I know chances are good that I’ll become more disabled with each infection. And I don’t want to reach a point where my quality of life is so low, that I’m okay with dying.
That’s hard to understand, but in a way that’s what end of life suffering does for us, it makes us okay with the dying process. I just don’t want to be feeling that before my time.
My only hope for a somewhat normal life again is a better vaccine. But Biden has not properly funded next gen vaccines either. So I imagine it will be 3-5 years in the future if it happens at all.
Oh, if you have POTS, visible settings have to be adjusted for the higher baseline heart rate. Customer service can help you do that, and you’ll have more points for the day.
By sharing the info from your trackers, you’ve given everyone who reads this a much clearer understanding of what you and other long Covid-sufferers are going through. I knew it was bad, but seeing the data made my jaw drop. I’m so sorry this is happening to you.
It’s funny (not funny) - I was reading your section on trackers and was thinking I’d comment that after you learn your body’s rhythms through such tools, take them all off and stop watching your body like a hawk. This just keeps your brain (and hence, your nervous system) on high alert. I used the Visible armband and my FitBit for a good few months toward the end of 2023 and I learned a lot. I had been way overdoing things before I had these trackers. The trackers helped me get into a better window of energy use that I have been able to sustain since (with a few slip ups here and there). I’ve made solid gains in the last two years, and I attribute that to pacing and working on keeping my nervous system in a state of calm and joy. I watched a ton of recovery videos on Raelan Agle’s YouTube channel too. That kept my brain hopeful, which was a big help too. Good luck with everything! I hope you see improvements in 2025.
I tried apps etc but found thinking about those used energy too, I find listening to my body works better, it takes time to realise what takes more energy, sometimes things you wouldn't expect, so many different types of energy drain. I'm finding socialising (even gentle and brief) takes far more energy than I had thought, it has changed in the last year. (I've been ill for many years, but bad flare up this past 15months) Reading is sometimes too much, sometimes too much sound or light. It does all vary. Rest more than you think you need would be my advice to gradually improve your baseline. This flare up has been a long slog but I'm getting little glimpses of improvement now! Wishing you gentle rest and improvement x
I’ve also noticed that re: socializing taking more energy than i would have guessed. It’s a real pain, because that’s high on the list of things I’d like to do more of
Once again I applaud your honesty and willingness to share deeply personal insights. Hoping 2025 brings some relief and new approaches to healing. Btw sent 3 gift subscriptions to friends! Take care ❤️
Thank you, Laura!! Sending positive wishes for 2025 your way as well
Covid is a permanent disability. Each infection does incredible amounts of damage to your vascular and immune systems. Plus everything else. I've got one friend with holes in her lungs and "ground glass opacity" elsewhere. She used to be a rock climber. Now she's on oxygen and can barely walk across her livingroom. Another with MRI visible brain damage from Covid. She hasn't been able to taste or smell anything for 3 years. A pilot I know has had it 5 times, twice severe, and his wife finally called the FAA and pulled his ticket because he's so messed up he can't read a menu anymore, let alone a checklist for operating aircraft.
Here's some of the damage this disease does:
Lung https://cnn.com/2020/03/26/health/covid-19-lung-damage-video/index.html
Stroke https://webmd.com/lung/news/20210319/covid-patients-face-higher-risk-for-stroke
Kidney https://reuters.com/article/health-coronavirus-science/covid-science-severe-kidney-problems-seen-with-covid-19-second-vaccine-dose-should-not-be-delayed-for-cancer-patients-idUSL1N2LA26L
Liver https://nypost.com/2020/04/15/coronavirus-reportedly-damages-patients-kidneys-heart-liver/
Heart https://bloomberg.com/news/articles/2021-10-07/heart-damage-racks-covid-survivors-a-year-after-infection-study
Diabetes https://reuters.com/article/us-health-coronavirus-diabetes-children/study-links-covid-19-to-rise-in-childhood-type-1-diabetes-idUSKCN25E0W0
Brain https://statnews.com/2021/04/06/1-in-3-covid19-patients-get-neuropsychiatric-diagnosis-within-six-months/
It also causes people to go into severe psychosis:
https://www.advisory.com/daily-briefing/2021/03/26/covid-psychosis
Destroys your immune system
https://www.livescience.com/covid-19-linked-to-40-increase-in-autoimmune-disease-risk-in-huge-study
And increases risk of heart attacks/heart failure 72% for at least 3 years after infection https://people.com/health/covid-increases-risk-of-life-threatening-heart-problems-in-unvaccinated-people-even-in-mild-cases/
In addition to the visually disfiguring hair and tooth loss. Bone loss. Skin discoloration, rashes, boils, etc.
Plus strokes https://healthcare.utah.edu/healthfeed/2022/01/covid-19-increasing-stroke-risks-people-of-all-ages You've seen people suffering from strokes, right? The inability to speak? To walk?
Blindness https://medicine.missouri.edu/news/covid-19-virus-could-damage-vision
If people think masks are somehow worse than all that, then we need to seriously re-examine our decisionmaking paradigms and priorities. Because something is very, very wrong.
That would be a paper to write.
PS. H5N1 bird flu is much, much worse...And we're letting it mutate to infect humans effectively right now. https://www.instagram.com/reel/DESq8fUvOCj/
This isn't "fear porn". This is a fire alarm.
I don’t blame anyone for being ableist. It’s at the root of mercantilism which is at the root of colonialism which is at the root of capitalism.
I have friends and family who are disabled, as is my son. I always assumed I would get long covid due to some fairly benign autoimmune conditions. Plus, 2 of my cousins died from covid. Covid killed Black Americans at a disproportionate higher rate than white people. I think that African Americans and Native Americans have taken covid much more seriously cause almost everyone was touched by someone who died.
The one case of covid that I have had, which my spouse gave me, gave me long covid.
Twitter only has right wing nuts on it. Don’t use it. Delete your account like most of us have.
Did you see the brigham hospitals ai report that they think 25% of their patients have undiagnosed long covid.
I think that one of the worst effects of long covid is the destruction of our ability to make serotonin. I think people are angrier due to this. They don’t know why they are angry or depressed- but it is likely covid. School shootings have doubled since 2018. Doubled.
And the other thing that breaks me is the maternal deaths. So many. So many become septic. And die.
Sepsis is on the increase, as is every disease related to our immune system- which is everything. Even our muscles use our immune system.
Well- Not sure if we connected on reddit. But i use the name humanist 2020 over there.
Reach out anytime.
I have become wiser after 60 yrs…and enjoy being an Auntie to anyone who wants an Auntie.
Be as well as you can be.
The anger post Covid is awful. I don’t feel like myself. I just started on an SSRI called Luvox that is reducing it thankfully.
Incredible how little control we actually have over emotions. Makes me feel like a damaged robot
I'm so sorry to hear all of this. I truly am.
Thank you, Suzanne 💙
I’m sorry that some of Covid conscious community took their anger out on you. It’s not right. And kind of lateral ableism.
You’re one person and really this has been the Biden Administration and media’s fault.
Biden did everything that Trump wanted to do. He didn’t keep his campaign promise of reducing deaths. He just stopped testing and relied on vaccines that quickly became infective at stopping transmission
We could have had clean indoor air and seized the opportunity for expanding the safety net, but instead, our politicians chose the economy. Which long-term won’t be doing well when the majority of people are disabled by Covid
I’m immune compromised, and I was safe until 2022 when mass infection was chosen as the strategy. Flimsy little cloth masks kept me safe while everyone was also masking around me.
Then I caught COVID outdoors Fall 2022 from a neighbor. No place has been safe for me since. And it’s not the life I wanted.
I was already disabled, and I know chances are good that I’ll become more disabled with each infection. And I don’t want to reach a point where my quality of life is so low, that I’m okay with dying.
That’s hard to understand, but in a way that’s what end of life suffering does for us, it makes us okay with the dying process. I just don’t want to be feeling that before my time.
My only hope for a somewhat normal life again is a better vaccine. But Biden has not properly funded next gen vaccines either. So I imagine it will be 3-5 years in the future if it happens at all.
Oh, if you have POTS, visible settings have to be adjusted for the higher baseline heart rate. Customer service can help you do that, and you’ll have more points for the day.