You are a really talented writer. I’m sure it’s not easy but you do a great job. I can’t fully appreciate how bad this sucks but you provide a flavor. I read about research and new findings regularly. So hoping for a breakthrough to help.
I just wanted to say - I'm so sorry you are going through this. It sounds absolute shit. An internet friend of mine had a really serious bout of post viral malaise/ syndrome back before covid. And the recovery did happen, slowly, and there was a whole lot of radical rest. Sleep. Naps. Lie downs when she didn't think she needed to. There were set backs. It took a long time. But she did recover, and I am sending my best wishes that you will, too.
My friend L. is also going through post covid terrible times, with a flare up of Epstein Barr and miserable fatigue. I am so glad for her to have a good doctor who is trying to support her through it - I think she's on big supplements of vitamin C or D and a whole lot of things. I wish you had more support.
It sounds like you don't get enough notes of appreciation, so I wanted to reach out and say I appreciate your energy and writing and sharing.
Thank you for taking the time and energy to write an update. You are seen. This blog, your writing, and yes your anger has been helpful to me. It's crazy that more isn't being done to prevent infections and work more on helping people whose lives have been decimated by this disease.
I hear you and feel for you Julia. Long Covid just sucks. As much as people can try to understand, unless they have it and symptoms like yours they can’t. PEM and I are in an abusive relationship where I keep hoping it won’t be bad next time. Sometimes activities are ok, but other days the same activity is not. I try not to blame myself for over doing it or over analyzing where exactly I went wrong. I get too agitated to read or watch tv, but I’m also bored with no energy. So I’m left with my thoughts and that is never good. It just sucks.
3. There is a very experienced acupuncturist in my area who trained in China as a physician trained in western and chinese medicine. He has been practicing as an acupuncturist in the U.S for over thirty years. He uses Chinese herbs to treat Long Covid patients. I cannot attest to his treatment successes because I do not have long covid. He does take insurance. If you are interested please contact me.
4. I do not know whether or not you could use additional support. A friend of mine found this site helpful: https://lotsahelpinghands.com/ . You may not have the energy to organize this for yourself but perhaps some friends/readers in your area could help organize this for you.
I wish you better health, Julia. Most people are cold and unfeeling to the suffering of others until they themselves are sick. That's what it will take for this delusional state that we're in to dissolve and disappear. Until then, please know that your readers and I are grateful for all you have done and still do. You do not owe us anything. Just focus on your own health. Many thanks.
I'm sorry you have to live like this Julia. I don't have long COVID, but I do sometimes get terrible migraines. I sometimes get pretty much what you're describing, except it's for 1-3 days at a time but it's not that often. Nonetheless, I know the feeling of powerless of not being able to do anything. Even taking a shower or washing dishes feels impossible. It absolutely sucks. I hate feeling powerless. I have a small taste of what you go through, and I am so sorry. I will continue to support you. I don't want you to worry about losing supporters. I think we all understand.
I am so sorry to hear this, of course, but also pissed off that there doesn't seem to be much interest in doing anything about Long Covid. I hope you find some real solutions and genuine relief. What you're going through sounds awful and so unnecessary.
I hope I never get as bad as you are describing. I have had fibro all my life. I have always been able to at least get around and take care of personal needs.
What I have found is to listen to my body. When it says sleep, sleep. When it says, get some exercise, get some exercise. When it says, this is enough for today, it is enough for today. Of course, this is me, and my old carcass.
I think the trouble is not in adapting to the world, but in getting the world to adapt to me and my needs. As in, look, I can do this much right now, and that's it. Do not keep trying to push me for more.
I must echo, Keith. This is a beautifully wrought testament to your determination and acumen. For some reason, I'm thinking of Virgnia Woolf's On Being Ill, one of the many seminal illness narratives I consumed during cancer treatment, a bizarre, toxic liminal state that fatigues you, scares you, scars you, and more. I'm also thinking of Anne Boyer's The Undying, rendered in short nonlinear fragments. If you are working on personal narrative, this form might be very conducive to the short spurts of energy associated with chronic illness. Reading and writing are clearly paramount to your existence. Wishing you better days and continued progress. xo
Wishing you so very much better from the world than what you’ve gotten so far. We do all understand that your body leaves you no choice but to stop and try to heal itself. Wishing you also as much good rest as is possible. We’ll be patient and see you when you get back.
(1) Thanks for sharing. I know it feels like despair. But evolution to better is never out of the question!
(2) On bad days, breathe deep, listen to birds and rest.
(3) My wife had ME/CFS with PEM and had good relief both from Ayurvedic and Chinese herbs. But you have to seek out a really knowledgeable practitioner. I regret I have no contacts to recommend, but I can seek them out if you email me.
Julia, you are loved and appreciated by myself and so many others simply for who you are and all that you stand for ❤️ Neoliberal capitalism’s cruel twisting tentacles are everywhere and so much of what you’re dealing with shouldn’t have come to be!! I am filled with a mix of rage and sorrow at the situation you and countless others have been placed. Thinking of you often!
I'm so sorry you're enduring this! For what it's worth, emotional dysregulation can be a feature of migraines, too. Perhaps rather than trying to control your "negative" emotions, simply recognize that in the same way you can't "control" having a migraine, you can't control this flood of emotions that accompany them either.
You are a really talented writer. I’m sure it’s not easy but you do a great job. I can’t fully appreciate how bad this sucks but you provide a flavor. I read about research and new findings regularly. So hoping for a breakthrough to help.
I just wanted to say - I'm so sorry you are going through this. It sounds absolute shit. An internet friend of mine had a really serious bout of post viral malaise/ syndrome back before covid. And the recovery did happen, slowly, and there was a whole lot of radical rest. Sleep. Naps. Lie downs when she didn't think she needed to. There were set backs. It took a long time. But she did recover, and I am sending my best wishes that you will, too.
My friend L. is also going through post covid terrible times, with a flare up of Epstein Barr and miserable fatigue. I am so glad for her to have a good doctor who is trying to support her through it - I think she's on big supplements of vitamin C or D and a whole lot of things. I wish you had more support.
It sounds like you don't get enough notes of appreciation, so I wanted to reach out and say I appreciate your energy and writing and sharing.
Thank you for taking the time and energy to write an update. You are seen. This blog, your writing, and yes your anger has been helpful to me. It's crazy that more isn't being done to prevent infections and work more on helping people whose lives have been decimated by this disease.
I hear you and feel for you Julia. Long Covid just sucks. As much as people can try to understand, unless they have it and symptoms like yours they can’t. PEM and I are in an abusive relationship where I keep hoping it won’t be bad next time. Sometimes activities are ok, but other days the same activity is not. I try not to blame myself for over doing it or over analyzing where exactly I went wrong. I get too agitated to read or watch tv, but I’m also bored with no energy. So I’m left with my thoughts and that is never good. It just sucks.
I love your work and I am so sorry to hear what you are going thru. I want to offer a few practical ideas that might help.
1. You may have seen this list of Long Covid competent providers but in case you have not: https://docs.google.com/spreadsheets/d/1qRz6jcMX2Yx7_prnJqdBQFXgVJE_CgZSlIYNshW3XJM/edit?pli=1&gid=718047883#gid=718047883.
2. I think you are in the DMV area. I have read about this group with mixed reviews: https://gwcim.com/services/long-covid-programs/
3. There is a very experienced acupuncturist in my area who trained in China as a physician trained in western and chinese medicine. He has been practicing as an acupuncturist in the U.S for over thirty years. He uses Chinese herbs to treat Long Covid patients. I cannot attest to his treatment successes because I do not have long covid. He does take insurance. If you are interested please contact me.
4. I do not know whether or not you could use additional support. A friend of mine found this site helpful: https://lotsahelpinghands.com/ . You may not have the energy to organize this for yourself but perhaps some friends/readers in your area could help organize this for you.
I wish you better health, Julia. Most people are cold and unfeeling to the suffering of others until they themselves are sick. That's what it will take for this delusional state that we're in to dissolve and disappear. Until then, please know that your readers and I are grateful for all you have done and still do. You do not owe us anything. Just focus on your own health. Many thanks.
So much empathy. Some people with Long COVID have been helped with treatments for mast cell activation syndrome: https://sa1s3.patientpop.com/assets/docs/295884.pdf
I'm sorry you have to live like this Julia. I don't have long COVID, but I do sometimes get terrible migraines. I sometimes get pretty much what you're describing, except it's for 1-3 days at a time but it's not that often. Nonetheless, I know the feeling of powerless of not being able to do anything. Even taking a shower or washing dishes feels impossible. It absolutely sucks. I hate feeling powerless. I have a small taste of what you go through, and I am so sorry. I will continue to support you. I don't want you to worry about losing supporters. I think we all understand.
I am so sorry to hear this, of course, but also pissed off that there doesn't seem to be much interest in doing anything about Long Covid. I hope you find some real solutions and genuine relief. What you're going through sounds awful and so unnecessary.
I hope I never get as bad as you are describing. I have had fibro all my life. I have always been able to at least get around and take care of personal needs.
What I have found is to listen to my body. When it says sleep, sleep. When it says, get some exercise, get some exercise. When it says, this is enough for today, it is enough for today. Of course, this is me, and my old carcass.
I think the trouble is not in adapting to the world, but in getting the world to adapt to me and my needs. As in, look, I can do this much right now, and that's it. Do not keep trying to push me for more.
I must echo, Keith. This is a beautifully wrought testament to your determination and acumen. For some reason, I'm thinking of Virgnia Woolf's On Being Ill, one of the many seminal illness narratives I consumed during cancer treatment, a bizarre, toxic liminal state that fatigues you, scares you, scars you, and more. I'm also thinking of Anne Boyer's The Undying, rendered in short nonlinear fragments. If you are working on personal narrative, this form might be very conducive to the short spurts of energy associated with chronic illness. Reading and writing are clearly paramount to your existence. Wishing you better days and continued progress. xo
Wishing you so very much better from the world than what you’ve gotten so far. We do all understand that your body leaves you no choice but to stop and try to heal itself. Wishing you also as much good rest as is possible. We’ll be patient and see you when you get back.
(1) Thanks for sharing. I know it feels like despair. But evolution to better is never out of the question!
(2) On bad days, breathe deep, listen to birds and rest.
(3) My wife had ME/CFS with PEM and had good relief both from Ayurvedic and Chinese herbs. But you have to seek out a really knowledgeable practitioner. I regret I have no contacts to recommend, but I can seek them out if you email me.
Julia, you are loved and appreciated by myself and so many others simply for who you are and all that you stand for ❤️ Neoliberal capitalism’s cruel twisting tentacles are everywhere and so much of what you’re dealing with shouldn’t have come to be!! I am filled with a mix of rage and sorrow at the situation you and countless others have been placed. Thinking of you often!
I'm so sorry you're enduring this! For what it's worth, emotional dysregulation can be a feature of migraines, too. Perhaps rather than trying to control your "negative" emotions, simply recognize that in the same way you can't "control" having a migraine, you can't control this flood of emotions that accompany them either.
I hear you