One thing I found really interesting was that people with Long Covid or ME/CFS sometimes cannot tolerate listening to spoken words, audio, etc. I have a much lower tolerance for being able to listen and focus during long conversations or to extended audio in the last few years. (Especially if the volume is high. I do much better wearing Loop earplugs.) It's one of the stressors that leads to me having a meltdown. Interesting to imagine this all might be connected.
It’s definitely connected! Our nervous systems are stuck in fight or flight mode, so startling noises make our bodies perceive that there is a threat or danger afoot. I cannot be around my husband when he loads and unloads the dishwasher, because the clinking of the plates is so unpredictable to my brain and it just sends me over the edge. Some days I have to tell him “I’m really sensitive today,” and he knows that means he has to take extra steps to do things quietly around the house.
Loops are the best! I would not have gotten through the last several years without them.
Hello from another LC'er. I found your substack from your comment on someone elses. Like the content and will be back to read more (I have screen issues from LC so can't stare at a laptop for too long - yay me).
Question about Sensate. I've been thinking about buying one of these kind of devices to help calm my nervous system down, but I don't want to deal with another app. Do you find there are benefits to using this w/out the app (just the vibrations) or do you need the app and sounds to get the full benefit.
Glad you’re here, Stacy. With the Sensate, you actually need the app to operate it. The vibrations are coordinated with the songs they engineer. But it’s a simple app and there’s no tracking or reading to do. I can message you a few screen shots so you can see.
I have also recently been hearing about TENS devices that could also be helpful. Here’s a YT video discussing one called the Pulsetto.
Kitty shenanigans did not disappoint this week, nor did the tattoo!! I have one of those ghost flash tattoos on my forearm and I’m going to add a ghostie with books and a ghostie cat (RIP peanut) when I get my shit together 🖤
I really liked your honest review of Visible. I tried the wearable for about 3 months and just felt like I was contributing more ‘work’ than the benefit I was receiving. Someone else commented that they liked ‘Training Today’ app and this has been a godsend. Real life validation of what I’m feeling and also queues to tell me when I can do more or when I need to proceed with caution (I, like many others have significant body-dissociation; this app is actually helping!)
Well said. I feel like Visible has a tipping point between usefulness and hypervigilance, and I had a sense I had tipped. That said, I recently put my FitBit back on for a few days to see if my POTS had gotten better (I suspected it had), and indeed it did. So they do have their uses.
Thanks for the shout out, LOVED the pic. A 'quick' comment on the use of the term "Post-Viral Illnesses" (which I have used so may times over the past 30 years that it is literally impossible to estimate just how many times that was - and when did I ever make a 'quick' comment?). For me, this is a research/community issue. Might not have even been your use of the term.
OK, to my point.
The post-VIRAL in ME/CFS is an assumption (not so much in Long COVID). My history (including a very thorough work-up at the associated National Reference Lab) would say that Toxoplasmosis was the first guest to arrive and likely the one that broke into mom and dad's liquor cabinet to really kick off the party.
For years I just used the term "post-viral" as an ME advocate because that was what everyone was using. Except that 'toxo' is a parasite. Even so, my presentation was classic ME.
So are post infectious diseases all about the specific original infectious agent or are they more about the party they got started but quickly lost control of (someone 'not so close friend' trying to be cool posts the address on X and before the night is out, kids with guns are showing up from out of state!).
I lean towards the later (which involves "lumping" - different post), especially when discussing community and in the early stages of research design/data gathering and the former ("splitting") when research hits a snag and you need to eliminate all of the potential noise (like that from similar seeming but actually unrelated co-horts).
I'm going to leave it there. Just wondering out loud if what we know at this point is that this is viral or could it be a broader issue the affects people post all sorts of infections and is more immune response based? Don't know that the science is really THERE yet.
And to all you post-infectious disease folks, hang in there. I do believe that some important leaps in our understanding of underlying mechanisms are on the not very distant horizon.
Dreaming of the day that everyone is POST-post infectious!
You are right - not all cases of ME/CFS are post-viral. I will be mindful of that moving forward. I do find it hard to keep everything in mind still. I read and reread my posts and still miss stuff.
Thank you for all the gifts! They trickled in one by one and I found myself going “another one?” ☺️ So generous - thanks again.
That statement is so true “the only way is through”. I haven’t found any other way either and nothing inconclusive. I flung together a resources file for my interview with Rachel
Katz aired this week. I plan to share that here as is at some point and also pad it out with more info in a separate piece later on like you have here. Never heard of any of those books! Sure could have done with them. It blows my mind the angle and approach I took to my healing, do you find the same? I am writing a series of books and my last one “making piece with migraine” will be more about the how to. Still here trying to piece the enormity of what I’ve done and how I’ve done it together though. Writing the first few books is def helping me make sense of it all.
My approach to healing has felt like throwing every variety and brand of pasta at the wall and finding the very few that “stick.” It has felt kind of haphazard and definitely unscientific. And if I’m honest, a bit tenuous still. But I’m trying not to overthink it all.
That’s definitely one way to do it! Back in my recruitment/sales days that was one way that was once described to us. The “Throw enough mud and some will stuck” method.
I don’t see it that there’s a right or wrong way, there can’t only be one way in a universe of infinite possibility. Just that we need to recognise and understand there are ways. Find out more about them, see which ones align best for us. This is an element that seems to be missing.
I'm restacking and recommending Amy's post on Recovery Tools, Part 2. It's loaded with information on resources and reflects a generous and optimistic perspective in the long campaign to overcome Long COVID. Of special note to me are insights that it takes time to recover and that stresses (like surgery for a beloved cat) can contribute to setbacks. Thanks Amy!
Hi Rebecca - the necessary wavelengths are between 660nm-850nm. Maybe you can check the therasage website to see if their products are within these wavelengths.
Thanks for sharing all these resources!
One thing I found really interesting was that people with Long Covid or ME/CFS sometimes cannot tolerate listening to spoken words, audio, etc. I have a much lower tolerance for being able to listen and focus during long conversations or to extended audio in the last few years. (Especially if the volume is high. I do much better wearing Loop earplugs.) It's one of the stressors that leads to me having a meltdown. Interesting to imagine this all might be connected.
It’s definitely connected! Our nervous systems are stuck in fight or flight mode, so startling noises make our bodies perceive that there is a threat or danger afoot. I cannot be around my husband when he loads and unloads the dishwasher, because the clinking of the plates is so unpredictable to my brain and it just sends me over the edge. Some days I have to tell him “I’m really sensitive today,” and he knows that means he has to take extra steps to do things quietly around the house.
Loops are the best! I would not have gotten through the last several years without them.
Hello from another LC'er. I found your substack from your comment on someone elses. Like the content and will be back to read more (I have screen issues from LC so can't stare at a laptop for too long - yay me).
Question about Sensate. I've been thinking about buying one of these kind of devices to help calm my nervous system down, but I don't want to deal with another app. Do you find there are benefits to using this w/out the app (just the vibrations) or do you need the app and sounds to get the full benefit.
Glad you’re here, Stacy. With the Sensate, you actually need the app to operate it. The vibrations are coordinated with the songs they engineer. But it’s a simple app and there’s no tracking or reading to do. I can message you a few screen shots so you can see.
I have also recently been hearing about TENS devices that could also be helpful. Here’s a YT video discussing one called the Pulsetto.
https://youtu.be/og8UOYatAmg?feature=shared
Kitty shenanigans did not disappoint this week, nor did the tattoo!! I have one of those ghost flash tattoos on my forearm and I’m going to add a ghostie with books and a ghostie cat (RIP peanut) when I get my shit together 🖤
I hope you’ll include pics of these in one of your upcoming posts 🤞🏻
I really liked your honest review of Visible. I tried the wearable for about 3 months and just felt like I was contributing more ‘work’ than the benefit I was receiving. Someone else commented that they liked ‘Training Today’ app and this has been a godsend. Real life validation of what I’m feeling and also queues to tell me when I can do more or when I need to proceed with caution (I, like many others have significant body-dissociation; this app is actually helping!)
Well said. I feel like Visible has a tipping point between usefulness and hypervigilance, and I had a sense I had tipped. That said, I recently put my FitBit back on for a few days to see if my POTS had gotten better (I suspected it had), and indeed it did. So they do have their uses.
Hey Amy,
Thanks for the shout out, LOVED the pic. A 'quick' comment on the use of the term "Post-Viral Illnesses" (which I have used so may times over the past 30 years that it is literally impossible to estimate just how many times that was - and when did I ever make a 'quick' comment?). For me, this is a research/community issue. Might not have even been your use of the term.
OK, to my point.
The post-VIRAL in ME/CFS is an assumption (not so much in Long COVID). My history (including a very thorough work-up at the associated National Reference Lab) would say that Toxoplasmosis was the first guest to arrive and likely the one that broke into mom and dad's liquor cabinet to really kick off the party.
For years I just used the term "post-viral" as an ME advocate because that was what everyone was using. Except that 'toxo' is a parasite. Even so, my presentation was classic ME.
So are post infectious diseases all about the specific original infectious agent or are they more about the party they got started but quickly lost control of (someone 'not so close friend' trying to be cool posts the address on X and before the night is out, kids with guns are showing up from out of state!).
I lean towards the later (which involves "lumping" - different post), especially when discussing community and in the early stages of research design/data gathering and the former ("splitting") when research hits a snag and you need to eliminate all of the potential noise (like that from similar seeming but actually unrelated co-horts).
I'm going to leave it there. Just wondering out loud if what we know at this point is that this is viral or could it be a broader issue the affects people post all sorts of infections and is more immune response based? Don't know that the science is really THERE yet.
And to all you post-infectious disease folks, hang in there. I do believe that some important leaps in our understanding of underlying mechanisms are on the not very distant horizon.
Dreaming of the day that everyone is POST-post infectious!
You are right - not all cases of ME/CFS are post-viral. I will be mindful of that moving forward. I do find it hard to keep everything in mind still. I read and reread my posts and still miss stuff.
Thank you for all the gifts! They trickled in one by one and I found myself going “another one?” ☺️ So generous - thanks again.
You're very welcome. We need to take care of those cat! That's where I got "toxo." I couldn't hold it against them.
That statement is so true “the only way is through”. I haven’t found any other way either and nothing inconclusive. I flung together a resources file for my interview with Rachel
Katz aired this week. I plan to share that here as is at some point and also pad it out with more info in a separate piece later on like you have here. Never heard of any of those books! Sure could have done with them. It blows my mind the angle and approach I took to my healing, do you find the same? I am writing a series of books and my last one “making piece with migraine” will be more about the how to. Still here trying to piece the enormity of what I’ve done and how I’ve done it together though. Writing the first few books is def helping me make sense of it all.
My approach to healing has felt like throwing every variety and brand of pasta at the wall and finding the very few that “stick.” It has felt kind of haphazard and definitely unscientific. And if I’m honest, a bit tenuous still. But I’m trying not to overthink it all.
Saw this podcast episode today and thought of you: https://podcasts.apple.com/us/podcast/tlc-sessions-living-with-long-covid/id1574768076?i=1000649400226
That’s definitely one way to do it! Back in my recruitment/sales days that was one way that was once described to us. The “Throw enough mud and some will stuck” method.
I don’t see it that there’s a right or wrong way, there can’t only be one way in a universe of infinite possibility. Just that we need to recognise and understand there are ways. Find out more about them, see which ones align best for us. This is an element that seems to be missing.
I'm restacking and recommending Amy's post on Recovery Tools, Part 2. It's loaded with information on resources and reflects a generous and optimistic perspective in the long campaign to overcome Long COVID. Of special note to me are insights that it takes time to recover and that stresses (like surgery for a beloved cat) can contribute to setbacks. Thanks Amy!
That cNST news is Huge!
Woke a therasage work for the red light
I am not familiar with them. There’s a certain wattage or strength the bulbs have to be for efficacy. I’ll try to look it up and get back to you.
Oh that's a big deal thank you
Hi Rebecca - the necessary wavelengths are between 660nm-850nm. Maybe you can check the therasage website to see if their products are within these wavelengths.