As a teen dealing with fibromyalgia in the 90s (back when it was hard to find a doctor who even knew what it was let alone believed it was real, and absolutely no chance they knew what to do about it) I had several nights where I was absolutely sure I was about to die. So exhausted I could hardly move, deep aches everywhere... it felt like my body was on the verge of shutting down. More than once, I scribbled a note with which friend should get my favorite toys and such, and then crawled into bed honestly believing it was at best a coin toss whether or not I'd wake up in the morning.
It was hard to get to sleep that first time, but I accepted it as just something that either would be or would not. Nothing I could do about it. Staying up certainly wouldn't help anything. So I just lay there, closed my eyes, cleared my mind, and let go. The second and third times it still felt very much like this time my body really was on the edge of giving up the ghost, but at least I had the experience of having survived the first time.
Learning to let go is important. And knowing when to let go. Meditation helped me a lot in training my mind to step back back from the panic, fear, and other emotions, decide rationally what was appropriate, and just left everything else flow past me and away.
I also remember when my sister had her first baby. As a new mom, she would fret and panic over every little thing. Laughing at herself for doing it, but unable to get her mind to stop. "Oh no! The baby is ____! This must be a sign of something dire!" She had a whole panic because the baby didn't always turn to look at her when she spoke. Well, babies don't always do that. Sometimes they're asleep, sometimes they're just not interested. Perfectly normal. Not an indication that there's anything wrong with her. It became a touchstone. A year later, sis called and I picked up the phone. "Is Mom there? I have to talk to her!!" "Oh, is the baby going deaf again?" She laughed and thanked me. Exactly what she'd needed to hear. It calmed her down to remember, and she was able to step back, take a breath, and see that this was not a red alert all hands on deck situation, either.
Stuff like this, it's all we can do. Like the book cover says in large friendly letters, DON'T PANIC. Step back, meditate, and give yourself some space. There are some things worth worrying about, if it's a situation that's genuinely a problem AND one that you can actually do something to address. But a lot of things just aren't as big an issue as our lizard brains make them out to be, and a lot of things are beyond our ability to control at all. Do what you can. And accept the rest. That's life.
Thanks for including my article here! I’m someone who was always fretting and worrying - so learning to let go did not come easy but it has been a huge help.
That said - no matter how good we get at meditation and “letting go” - our bodies can and will throw us curveballs.
Ironically right after I shared that article I had a horrendous flare that I couldn’t accept. I kept trying to find the cause, kept blaming myself, kept trying to push through it even though my body was crying out for rest.
I completely failed to follow my own advice - and I think it’s necessary to share when that happens so others know that none of us get it right 100% of the time.
We just have to accept the times we don’t, pick ourselves up and dust ourselves off… and try again. And again and again.
Letting go is good in theory. It helps a lot, most of the time. But we can't do it every time for everything. For one thing, that would leave us really isolated. (I've had times where I let go so hard I felt myself becoming an ascetic hermit.) But it's also just that we're human. We have limits. Sometimes letting go is just too hard. And that's okay. We can let go of the blame for failing to let go.
It is so incredibly frustrating to have a flare keeping you from doing what you want. What you know you should still be able to do, even within your new limits. If you have trouble letting go, it's only because you're still fighting to do your best. You haven't given up, and that's a good thing.
Anyway, thanks again for your writing. And for introducing me to Amy's blog, too.
Thank you both for this thread. I can so relate to getting better at something over time and yet still occasionally struggling with that thing. One of the worst parts of these illnesses is the unpredictability, and to my fellow disabled ginger, I can feel every word of your frustration around this. Your writing so often does that (makes me readily feel the feels).
I’m glad it’s helping you feel the feels - but I also hate that we’re in this position in the first place. It’s so tough - and likely a lifelong battle. We will get better at it - but some days will be harder than others and I’m working on learning to accept that.
I adore your writing. You made me spit my tea out (with laughter not with disgust might I add) at Sherlock Google, for which I have also been guilty of using regularly throughout my journey of healing - as well as 'forensic catastrophizing' (brilliant terminology).
I also became a 'test junky! The more testing I could get the better, all in hope that maybe just maybe I wouldn't have this life changing autoimmune condition and it would be something simply curable and I'd hop back on that normality train to freedom!
I truly resonate with pretty much of what you have written in this piece, it doesn't matter what the shitty diagnosis is, when it arrives it is a bolt out the blue leaving you battling with debilitating symptoms, whilst trying to fathom out WhyTAF is this happening to me and where do I sign to make it all go away.
Thank you so much, Abbie! I’m glad you’re here. We need more gumshoes like you! (In all seriousness, for as many docs I’ve seen these last almost five years who condescended to me or dismissed my forensics, there have been several who have said to me, “I think you know more about this now than I do.” Managed care leaves them little time to scour the links, but guess who has two thumbs and a whole lot more time on their hands than they do?? The amateur Inspector Gadgets of the world 🤓. Proud to be a newly minted forensics expert alongside you.
Thank you! So glad to have found you. I hear you on the condescending consultants...sheesh I've met a few, they are such a joy to behold. Looking forward to reading more of your newsletters over the coming weeks 🕵️♀️🤩
Hi Amy, This piece gave me a name for a negative thinking pattern around non-health areas of my life that I sometimes get stuck in. Thanks for the tools you provided that can help!
So interesting, Paula - I hadn’t even considered this in a non-health context! My resources are health-related, but the core concepts can be applied to all kinds of thought patterns.
Another great post, thank you Amy. I'm working my way through the links now. Forensic and garden-variety catastrophizing have certainly been a part of my own journey, too. More than anything else being on the front lines of the pandemic and having a real sense that I might not make it (as death counts surged and several young and healthy patients of mine died/were disabled by this disease, in addition to higher risks people we all hear about) while the world shut down - somehow that forced me to accept my vulnerability and mortality on a new level. My constant fears kind of burned out. I still have moments, but the pervasive stuff has settled down - and the parasympathetic stuff absolutely helps a lot (thanks for the link :)
Thanks, doc. We just cannot stay in that heightened place of fear forever (though we should absolutely use caution and reason). And, you keep churning out amazing posts; it’s my pleasure to share them!
Plavix that was prescribed off-label and has since substantially improved his quality of life. He still remains mostly housebound, but the drug relieved two years of constant agony of not being able to take a normal breath. Blood thinners including Plavix have been shown to reduce long Covid symptoms, possibly because they reduce microclots and hyperactive platelets found in patients. However, many physicians are wary of prescribing them due to bleeding risks. We are not suggesting that Plavix will be right for everyone with long Covid — we share this experience as an example.
As a retired family doc, I would say the blue under the base of your finger nails IS significant. The hematologist should be able to help. To me it signifies a blood cell, a clotting disorder or capillary fragility/inflammation (as small blood vessels twist and get cold at the ends of the fingers) all of which are not unknown in Long COVID. Push the hematologist to attend to it.
Thank you for this, doc. The functional medicine doctor I was seeing for a while thought it was indicative of microclotting, which we know is happening in long haulers. I did see a vascular specialist in late 2020 who insisted it wasn’t a vascular issue, but there was not much known yet about the epithelial damage or microclotting. Still, I do wish some docs would acknowledge that not much is known rather than speaking definitively. Anyway, I plan to remove my nail polish for the hematologist appointment and definitely show it to him. Thanks again for your insights.
Hi Chloë, here’s a very science-heavy article on EBV. If you scroll down to the Treatments section, you’ll find a lot of ideas.
I’ve been on valacyclovir for tamping down the EBV for four years now. I also took resveratrol and NAC supplements for a long time. I can’t say I really felt any difference, or if I did, what I would have attributed it to (I’ve been pacing well and working on nervous system too, which I feel has helped me more than any supplements). But you can decide what’s right for you. Good luck with it!
Fellow long-covid CFS with reactivated EBV here...and OH can I go down the "I WILL develop MS" catastrophizing route at least once a quarter. I'm nearly two years on famciclovir after 9 months on valacyclovir and who knows what it's doing. I can't brain enough to decode that article, Amy...I used to be sharp enough to do that but right now I'm made of crumbs in a puddle. Is there ANY way to get more info from bloodwork re: EBV other than ">600"...? I feel like...650? or 65,000,000? What is happening? I agree that the nervous system work, breathwork, somatics, and parts work are ALL doing more for me than these antivirals, but I don't want to give up that biological defense line either. Ooof. Hang in there, friends.
I feel the exact same way, Catherine. I have no idea if these drugs are doing anything (though here’s an article I’ve held onto for a while now suggesting that Valacyclovir is doing *something*. https://pmc.ncbi.nlm.nih.gov/articles/PMC2772668/
I was on famciclovir for a year and now valacyclovir for three years. About a year and a half ago, my infectious disease doc raised my dose from 500mg/day to 1g/day, because she said my numbers went up even more (there are a few different EBV tests that she runs in concert, and one of them gives you a more precise number than just “>600” as you’ve said). If you have the energy, skip over all the science in that article and scroll down to Treatments (it’s WAY down in the article).
thanks for this. It feels like we were having this conversation in another era altogether, two days ago. I appreciate how hard you work to encourage the community and share your own experience. It's so helpful for all of us not to feel alone, b/c of course that's the nervous system's very first need for safety. Solidarity, all.
Ugh is right. Trying to rally just for minimum life requirements right now. Have to teach at a conference this weekend, and that feels entirely impossible. Only trying to remember that togetherness with community is healing. Or a chance to grab another virus. 😂 Heaven help us all.
It's hard to get optimistic when you get A CT scan result like I did Thursday:
"There are bilateral right and left paramedian posterior diaphragmatic hernia defects with herniation of retroperitoneal fat consistent with Bochdalek hernias. The right diaphragmatic hernia defect measures 2.3 cm transversely. The left diaphragmatic hernia defect measures 1.3 cm transversely"
That scan was a doozy: emlarged heart, ground glass scarring in lungs (from Covid), a collapsed section of lung..and so forth.
What are Bochdalek hernias you ask? Better not to know! 🙂
My fellow 2020 alum, I cannot in good conscience “like” your comment, but I do appreciate you leaving it. Not every situation warrants optimism, it’s true. I guess I meant catastrophizing something that isn’t yet actually going on. But yikes - those results are a lot. Any plans of action yet from your docs?
Yes Amy, they said be sure to sign up for an installment plan with the local mortuary!! ⚰️⚰️⚰️
Just joking of course! Haven't heard from them yet, it was just a couple days ago! I'm not too worried actually, I've had more surgeries than most people have had hot breakfasts!!! 🥞🥞. I have another one coming up on the 11th. Truth! I'm thinking of asking for a volume discount!
As a teen dealing with fibromyalgia in the 90s (back when it was hard to find a doctor who even knew what it was let alone believed it was real, and absolutely no chance they knew what to do about it) I had several nights where I was absolutely sure I was about to die. So exhausted I could hardly move, deep aches everywhere... it felt like my body was on the verge of shutting down. More than once, I scribbled a note with which friend should get my favorite toys and such, and then crawled into bed honestly believing it was at best a coin toss whether or not I'd wake up in the morning.
It was hard to get to sleep that first time, but I accepted it as just something that either would be or would not. Nothing I could do about it. Staying up certainly wouldn't help anything. So I just lay there, closed my eyes, cleared my mind, and let go. The second and third times it still felt very much like this time my body really was on the edge of giving up the ghost, but at least I had the experience of having survived the first time.
There was another post about this last week: https://substack.com/@broadwaybabyto/note/c-74514165
Learning to let go is important. And knowing when to let go. Meditation helped me a lot in training my mind to step back back from the panic, fear, and other emotions, decide rationally what was appropriate, and just left everything else flow past me and away.
I also remember when my sister had her first baby. As a new mom, she would fret and panic over every little thing. Laughing at herself for doing it, but unable to get her mind to stop. "Oh no! The baby is ____! This must be a sign of something dire!" She had a whole panic because the baby didn't always turn to look at her when she spoke. Well, babies don't always do that. Sometimes they're asleep, sometimes they're just not interested. Perfectly normal. Not an indication that there's anything wrong with her. It became a touchstone. A year later, sis called and I picked up the phone. "Is Mom there? I have to talk to her!!" "Oh, is the baby going deaf again?" She laughed and thanked me. Exactly what she'd needed to hear. It calmed her down to remember, and she was able to step back, take a breath, and see that this was not a red alert all hands on deck situation, either.
Stuff like this, it's all we can do. Like the book cover says in large friendly letters, DON'T PANIC. Step back, meditate, and give yourself some space. There are some things worth worrying about, if it's a situation that's genuinely a problem AND one that you can actually do something to address. But a lot of things just aren't as big an issue as our lizard brains make them out to be, and a lot of things are beyond our ability to control at all. Do what you can. And accept the rest. That's life.
Beautifully said, Paul-Gabriel. Thanks for taking the time to write such a thoughtful comment.
Thanks for including my article here! I’m someone who was always fretting and worrying - so learning to let go did not come easy but it has been a huge help.
That said - no matter how good we get at meditation and “letting go” - our bodies can and will throw us curveballs.
Ironically right after I shared that article I had a horrendous flare that I couldn’t accept. I kept trying to find the cause, kept blaming myself, kept trying to push through it even though my body was crying out for rest.
I completely failed to follow my own advice - and I think it’s necessary to share when that happens so others know that none of us get it right 100% of the time.
We just have to accept the times we don’t, pick ourselves up and dust ourselves off… and try again. And again and again.
Letting go is good in theory. It helps a lot, most of the time. But we can't do it every time for everything. For one thing, that would leave us really isolated. (I've had times where I let go so hard I felt myself becoming an ascetic hermit.) But it's also just that we're human. We have limits. Sometimes letting go is just too hard. And that's okay. We can let go of the blame for failing to let go.
It is so incredibly frustrating to have a flare keeping you from doing what you want. What you know you should still be able to do, even within your new limits. If you have trouble letting go, it's only because you're still fighting to do your best. You haven't given up, and that's a good thing.
Anyway, thanks again for your writing. And for introducing me to Amy's blog, too.
Always happy to make introductions and I adore Amy’s writing - I’m sure you will too!
Thank you both for this thread. I can so relate to getting better at something over time and yet still occasionally struggling with that thing. One of the worst parts of these illnesses is the unpredictability, and to my fellow disabled ginger, I can feel every word of your frustration around this. Your writing so often does that (makes me readily feel the feels).
I’m glad it’s helping you feel the feels - but I also hate that we’re in this position in the first place. It’s so tough - and likely a lifelong battle. We will get better at it - but some days will be harder than others and I’m working on learning to accept that.
Thanks for mentioning my Long Covid First Aid Kit! So glad you found it helpful! 💕
Thanks for the mention 🫂
I adore your writing. You made me spit my tea out (with laughter not with disgust might I add) at Sherlock Google, for which I have also been guilty of using regularly throughout my journey of healing - as well as 'forensic catastrophizing' (brilliant terminology).
I also became a 'test junky! The more testing I could get the better, all in hope that maybe just maybe I wouldn't have this life changing autoimmune condition and it would be something simply curable and I'd hop back on that normality train to freedom!
I truly resonate with pretty much of what you have written in this piece, it doesn't matter what the shitty diagnosis is, when it arrives it is a bolt out the blue leaving you battling with debilitating symptoms, whilst trying to fathom out WhyTAF is this happening to me and where do I sign to make it all go away.
Thank you so much, Abbie! I’m glad you’re here. We need more gumshoes like you! (In all seriousness, for as many docs I’ve seen these last almost five years who condescended to me or dismissed my forensics, there have been several who have said to me, “I think you know more about this now than I do.” Managed care leaves them little time to scour the links, but guess who has two thumbs and a whole lot more time on their hands than they do?? The amateur Inspector Gadgets of the world 🤓. Proud to be a newly minted forensics expert alongside you.
Thank you! So glad to have found you. I hear you on the condescending consultants...sheesh I've met a few, they are such a joy to behold. Looking forward to reading more of your newsletters over the coming weeks 🕵️♀️🤩
Happy to eat more bagels, Amy!
My recon work told me you’ve featured bagels several times now!
Hi Amy, This piece gave me a name for a negative thinking pattern around non-health areas of my life that I sometimes get stuck in. Thanks for the tools you provided that can help!
So interesting, Paula - I hadn’t even considered this in a non-health context! My resources are health-related, but the core concepts can be applied to all kinds of thought patterns.
Another great post, thank you Amy. I'm working my way through the links now. Forensic and garden-variety catastrophizing have certainly been a part of my own journey, too. More than anything else being on the front lines of the pandemic and having a real sense that I might not make it (as death counts surged and several young and healthy patients of mine died/were disabled by this disease, in addition to higher risks people we all hear about) while the world shut down - somehow that forced me to accept my vulnerability and mortality on a new level. My constant fears kind of burned out. I still have moments, but the pervasive stuff has settled down - and the parasympathetic stuff absolutely helps a lot (thanks for the link :)
Thanks, doc. We just cannot stay in that heightened place of fear forever (though we should absolutely use caution and reason). And, you keep churning out amazing posts; it’s my pleasure to share them!
Plavix that was prescribed off-label and has since substantially improved his quality of life. He still remains mostly housebound, but the drug relieved two years of constant agony of not being able to take a normal breath. Blood thinners including Plavix have been shown to reduce long Covid symptoms, possibly because they reduce microclots and hyperactive platelets found in patients. However, many physicians are wary of prescribing them due to bleeding risks. We are not suggesting that Plavix will be right for everyone with long Covid — we share this experience as an example.
As a retired family doc, I would say the blue under the base of your finger nails IS significant. The hematologist should be able to help. To me it signifies a blood cell, a clotting disorder or capillary fragility/inflammation (as small blood vessels twist and get cold at the ends of the fingers) all of which are not unknown in Long COVID. Push the hematologist to attend to it.
Thank you for this, doc. The functional medicine doctor I was seeing for a while thought it was indicative of microclotting, which we know is happening in long haulers. I did see a vascular specialist in late 2020 who insisted it wasn’t a vascular issue, but there was not much known yet about the epithelial damage or microclotting. Still, I do wish some docs would acknowledge that not much is known rather than speaking definitively. Anyway, I plan to remove my nail polish for the hematologist appointment and definitely show it to him. Thanks again for your insights.
Can you recommend any resources for managing re-activated EBV?
Hi Chloë, here’s a very science-heavy article on EBV. If you scroll down to the Treatments section, you’ll find a lot of ideas.
I’ve been on valacyclovir for tamping down the EBV for four years now. I also took resveratrol and NAC supplements for a long time. I can’t say I really felt any difference, or if I did, what I would have attributed it to (I’ve been pacing well and working on nervous system too, which I feel has helped me more than any supplements). But you can decide what’s right for you. Good luck with it!
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-023-04515-7
Fellow long-covid CFS with reactivated EBV here...and OH can I go down the "I WILL develop MS" catastrophizing route at least once a quarter. I'm nearly two years on famciclovir after 9 months on valacyclovir and who knows what it's doing. I can't brain enough to decode that article, Amy...I used to be sharp enough to do that but right now I'm made of crumbs in a puddle. Is there ANY way to get more info from bloodwork re: EBV other than ">600"...? I feel like...650? or 65,000,000? What is happening? I agree that the nervous system work, breathwork, somatics, and parts work are ALL doing more for me than these antivirals, but I don't want to give up that biological defense line either. Ooof. Hang in there, friends.
I feel the exact same way, Catherine. I have no idea if these drugs are doing anything (though here’s an article I’ve held onto for a while now suggesting that Valacyclovir is doing *something*. https://pmc.ncbi.nlm.nih.gov/articles/PMC2772668/
I was on famciclovir for a year and now valacyclovir for three years. About a year and a half ago, my infectious disease doc raised my dose from 500mg/day to 1g/day, because she said my numbers went up even more (there are a few different EBV tests that she runs in concert, and one of them gives you a more precise number than just “>600” as you’ve said). If you have the energy, skip over all the science in that article and scroll down to Treatments (it’s WAY down in the article).
thanks for this. It feels like we were having this conversation in another era altogether, two days ago. I appreciate how hard you work to encourage the community and share your own experience. It's so helpful for all of us not to feel alone, b/c of course that's the nervous system's very first need for safety. Solidarity, all.
Such a great point about our nervous systems’ need for safety! Ugh, especially since this week’s terrible outcome.
Ugh is right. Trying to rally just for minimum life requirements right now. Have to teach at a conference this weekend, and that feels entirely impossible. Only trying to remember that togetherness with community is healing. Or a chance to grab another virus. 😂 Heaven help us all.
Amazing! Thank you so much x
It's hard to get optimistic when you get A CT scan result like I did Thursday:
"There are bilateral right and left paramedian posterior diaphragmatic hernia defects with herniation of retroperitoneal fat consistent with Bochdalek hernias. The right diaphragmatic hernia defect measures 2.3 cm transversely. The left diaphragmatic hernia defect measures 1.3 cm transversely"
That scan was a doozy: emlarged heart, ground glass scarring in lungs (from Covid), a collapsed section of lung..and so forth.
What are Bochdalek hernias you ask? Better not to know! 🙂
My fellow 2020 alum, I cannot in good conscience “like” your comment, but I do appreciate you leaving it. Not every situation warrants optimism, it’s true. I guess I meant catastrophizing something that isn’t yet actually going on. But yikes - those results are a lot. Any plans of action yet from your docs?
Yes Amy, they said be sure to sign up for an installment plan with the local mortuary!! ⚰️⚰️⚰️
Just joking of course! Haven't heard from them yet, it was just a couple days ago! I'm not too worried actually, I've had more surgeries than most people have had hot breakfasts!!! 🥞🥞. I have another one coming up on the 11th. Truth! I'm thinking of asking for a volume discount!