You might be interested in reading Bright Sided for a history of positive thinking in the U.S.
Then highly recommend Care Work for truly real and healing look at disability justice.
I became chronically ill at 21 after a bad case of mononucleosis. Fully disabled after being rear ended at 29, and now mostly housebound afar one covid infection in 2022 at 38.
I never give up on getting symptom relief, but I know there’s not a magic bullet either. And I know this difficult life has given me a perspective and wisdom that I wouldn’t give up for the chance to be cured.
Thank you for sharing what you’re exploring!
Edit: and I agree that bringing down stress can help with some symptoms. For example, I have MCAS, and stress can degranulate mast cells, releasing histamine.
I’ve been lurking there for months! And I’m with you on positive thinking not curing illness. That’s just a way to convince people they have control, bc who wants to believe that they’re helpless? The dysautonomia part of long covid is the product of a misfiring nervous system - but not the part that’s within our conscious control. That’s like suggesting you can think your way out of having MS. But I know that the more emotionally stressed I am, the more exertion that involves, and too much exertion = PEM, so that’s why I’ve been trying to find some measure of calm. That and the hope that it will make the experience of being sick less awful.
Mmm… the power of positive thinking is truly a white peoples phenomenon. Jessica Wildfire wrote about this recently- as the cause of so many problems.
In African American culture, we never bought into the power of positive thinking. Positive thinking hasn’t solved one social ill, or cancer, or kidney disease, or saved us from sarscov2.
I, too, have long covid. I got it from one case of covid, after being fully vaccinated and boosted. My spouse gave me covid. I would never have gotten covid if I didn’t share a bed. I had sepsis from long covid. I am lucky to be alive. Positive thinking does not cure sepsis. Trust me on this.
I was told in a lc clinic that all i had to do was calm my nervous system and I would be cured. This didn’t make any scientific sense to me.
I cannot find any scientific evidence to back up that we have 2 nervous systems, a parasympathetic and a sympathetic nervous system. I see one nervous system. If we believe that there are 2 systems, then the medical professionals can blame individuals for their illness. If we could only calm ourselves enough we can remove the sarscov2 that our immune system can’t reach. Or, stop cancer from growing. Or, stop sepsis from killing us.
No, I don’t believe we have 2 nervous systems. I believe we have 1 nervous system. I don’t believe we can cure ourselves or make ourselves sick.
I believe that most medical professionals don’t understand the immune system and the damage viruses cause. Especially sarscov2.
So sorry to hear you have long-Covid. I have been dealing with it (mostly PEM) for 3 years now. I was mostly disabled in the early months. I had good success early on with fasting. It raised my threshold for activity, enabling me to walk and live a normal, but low-exertional, life since then. I'm not fully recovered, but I am at least functional. Here is a good Facebook group focusing on fasting as a treatment for long-Covid. I hope you find something that helps.
Your description of the mental gymnastics around the mind/body and acceptance/hope binaries is perfect. Especially when hyper - pots is sending the ANS crazy and deep breathing just doesn’t cut it.
You might be interested in reading Bright Sided for a history of positive thinking in the U.S.
Then highly recommend Care Work for truly real and healing look at disability justice.
I became chronically ill at 21 after a bad case of mononucleosis. Fully disabled after being rear ended at 29, and now mostly housebound afar one covid infection in 2022 at 38.
I never give up on getting symptom relief, but I know there’s not a magic bullet either. And I know this difficult life has given me a perspective and wisdom that I wouldn’t give up for the chance to be cured.
Thank you for sharing what you’re exploring!
Edit: and I agree that bringing down stress can help with some symptoms. For example, I have MCAS, and stress can degranulate mast cells, releasing histamine.
Thank you for these recommendations! I will check them out.
Oh! And the long covid reddit group is helpful. So
Many ideas to try.
I’ve been lurking there for months! And I’m with you on positive thinking not curing illness. That’s just a way to convince people they have control, bc who wants to believe that they’re helpless? The dysautonomia part of long covid is the product of a misfiring nervous system - but not the part that’s within our conscious control. That’s like suggesting you can think your way out of having MS. But I know that the more emotionally stressed I am, the more exertion that involves, and too much exertion = PEM, so that’s why I’ve been trying to find some measure of calm. That and the hope that it will make the experience of being sick less awful.
“Prison zen” would be a nice skill to have. Must be very cathartic to write this all down. Have a great Thanksgiving!
Thank you! Same to you!
This is a great "good news" org out of Australia: https://www.futurecrunch.com/
Awesome! I will check it out :)
Mmm… the power of positive thinking is truly a white peoples phenomenon. Jessica Wildfire wrote about this recently- as the cause of so many problems.
In African American culture, we never bought into the power of positive thinking. Positive thinking hasn’t solved one social ill, or cancer, or kidney disease, or saved us from sarscov2.
I, too, have long covid. I got it from one case of covid, after being fully vaccinated and boosted. My spouse gave me covid. I would never have gotten covid if I didn’t share a bed. I had sepsis from long covid. I am lucky to be alive. Positive thinking does not cure sepsis. Trust me on this.
I was told in a lc clinic that all i had to do was calm my nervous system and I would be cured. This didn’t make any scientific sense to me.
I cannot find any scientific evidence to back up that we have 2 nervous systems, a parasympathetic and a sympathetic nervous system. I see one nervous system. If we believe that there are 2 systems, then the medical professionals can blame individuals for their illness. If we could only calm ourselves enough we can remove the sarscov2 that our immune system can’t reach. Or, stop cancer from growing. Or, stop sepsis from killing us.
No, I don’t believe we have 2 nervous systems. I believe we have 1 nervous system. I don’t believe we can cure ourselves or make ourselves sick.
I believe that most medical professionals don’t understand the immune system and the damage viruses cause. Especially sarscov2.
So sorry to hear you have long-Covid. I have been dealing with it (mostly PEM) for 3 years now. I was mostly disabled in the early months. I had good success early on with fasting. It raised my threshold for activity, enabling me to walk and live a normal, but low-exertional, life since then. I'm not fully recovered, but I am at least functional. Here is a good Facebook group focusing on fasting as a treatment for long-Covid. I hope you find something that helps.
https://www.facebook.com/groups/2559838777474649/
Your description of the mental gymnastics around the mind/body and acceptance/hope binaries is perfect. Especially when hyper - pots is sending the ANS crazy and deep breathing just doesn’t cut it.
Like most "long covid" "victims" you have a long history of mental illness. The overlap is insane. https://hsph.harvard.edu/news/psychological-distress-before-covid-19-infection-increases-risk-of-long-covid/#:~:text=Boston%2C%20MA%20%E2%80%93%20Psychological%20distress%2C,Chan%20School%20of%20Public%20Health.
If it wasn't covid it would be long Lyme disease or some other unfalsifiable malady.