Learning to accept the downtime without thinking about everything not getting done has helped my crashes and dips to process faster. Everything you've mentioned is what I've been doing too and it makes a huge difference.
Thank you for this. It's very succinct and really helpful to see how to define some of the experience of this condition. I'll be adding the system body scan to my morning meditation too.
When this thing started just over 4 years ago, I actually kept a daily spreadsheet of the key symptoms. I'd record my scores twice daily and the ranges were colour coded so it was easy to see patterns. Mapping this to my sleep was meant to give me something to take to my doctor to discuss possible options.
If course that never happened - when I finally got to a long COVID clinic all they were interested in was how many times I could sit/stand in a minute and what happen to my heart rate afterwards.
Geez. Well, your efforts are certainly not wasted. This language, and these trends, benefits us. I do this for myself, and it directly impacts my health.
One of the speakers at the NIH's RECOVER-TLC meeting today referred to PEM as PENE -- post-exertional neuroimmune exhaustion. I hadn't heard the term before, but even though it's more of a mouthful, it seems to capture something important. Just something to ponder...
Thank you so much for this. I can totally relate…I just told my husband, you are the first person, I have run into to who’s LC presents much like mine.
I have come close to defining mine similarly..but have never written it out…seeing it broken down in print…helps me, make more sense of it.
Totally off topic ..My new neurologist has suggested I try Adderal to help me “get though this, until my body works it out”
what do you think? (I hate to say it but…I feel somewhat desperate at the 2 1/2 year mark)
I don’t suffer from PEM but do experience fatigue (sometimes severe)that doesn’t necessarily follow exercise. A surprise has been that it seems to help brain fog (a lot). 10mg daily…second dose if I need it. I’d love to hear your thoughts on it.
I hear you, Zeest, and thank you from the bottom of my heart for writing this piece. It can’t have been easy.
Apologies in advance for how long this response to your brilliant post is, but I felt like I would explode if I didn’t give the fireworks in my brain a voice.
Thank you for the phrase brain sludge! Thank you for highlighting that there is such a thing as cognitive labour and that even just having emotions can drain a person's energy! Thank you for using your platform and *your* precious energy to offer vocabulary, a shared syntax to communicate with the world and, most importantly, with those who matter to us!
I, too, am a physician and am tortured and at a loss due to the mismatch between my physical capacity and my enthusiasm and ambition for life.
I’ve had CFS for almost 30 years (since my early 20’s) and could not sustain a career because of it – although, at the time, I blamed and shamed myself.
It's rare to meet people who understand that when you say I'm tired and exhausted, you're speaking on a totally different level from what most people are familiar with. Rare to meet someone with a similar frame of reference.
Which is why those of us with invisible illnesses can feel quite isolated and misunderstood. Invalidated and dismissed at best, maligned at worst. And it seems to sting a little more when 'advice' comes from well-meaning people.
I wholeheartedly agree that self-care=survival (mentally and physically).
It has taken me decades to identify what was REAL self-care and what was CONFUSINGLY ABUSIVE self-talk/unrealistic expectations, exacerbated by doctors/psych's 'advice' (read medical gaslighting) to exercise.
An example of this gaslighting is the supposedly evidence-based gradual exercise programs specifically for CFS that were shoved down our throats, and which now the research is showing can cause more harm for the very reasons you describe in your post – that POST EXERTIONAL MALAISE IS REAL.
Thank you for spotlighting one of the scariest aspects of having this illness when you gifted us with the phrase “dynamic illness.” We never know how long (minutes? hours? days? months? longer?) it will take us to recover from a dip or a crash.
I was so excited when you said in your article, “I can't always predict what level of exertion will trigger an episode, however, and that's what makes living with long COVID so challenging”.
The impact of this unpredictability cannot be overstated, and the general public and the medical community have yet to fully appreciate it.
I often have to explain to people that although the' 20 spoons' analogy of living with CFS is good (having to weigh every spoonful expenditure of energy to decide whether the activity is worth the effort given the limited number of spoons we have per day), it's not quite accurate.
To truly capture the anxiety-ridden liminal space we live in, I add that we NEVER KNOW at any given time just HOW MANY SPOONS WE HAVE FOR THE DAY.
So, we are functionally robbed of our ability to plan our days and make the necessary arrangements that would allow us to remain somewhat socially engaged and financially independent (employed, outings, etc.).
It's a delicate dance. For me, there comes a point where I *have* to listen to my body, and I try not to get too close to that point because I don’t want to pay the price.
I can’t afford to if I want to participate in things in life that bring me joy as I can participate in so few of them already!
The grief of missing out can sometimes feel unbearable, and I’d love to take you up on your offer to write about your experience of this as well. I would read that in a heartbeat.
Once I became resigned to never feeling refreshed and the unpredictability of my symptoms, I reluctantly learnt that I can't wait for my body to tell me it's ready (e.g., pain-free or has energy) because it never will!
So, I limited my rest breaks, forced myself to get up and move (sometimes gently), and then decided if I really needed to keep resting, KNOWING THAT I RISKED CREATING AN ENERGY DEBT THAT I WOULD HAVE TO REPAY LATER. Aaaaaarrrrggghhhh!
The irony here is that the symptoms that most define these invisible illnesses, like fatigue, noise and light sensitivity, voice weakness, and muscle weakness, share the same vocabulary as what people consider to be everyday experiences that they can easily recover from. And it certainly doesn't help that how we look on the outside is rarely a true reflection of how we feel on the inside. Aaaaarrrgggghhhh!
So, when we go into what you so beautifully described as “lockdown mode,” i.e., the self-care required to recover from these symptoms when we experience them, it does not translate well socially as it comes across as a rejection of others or neglect, thus unwittingly compounding our isolation further. (is it too much if I wrote Aaaaaaaarrrrgggghhhh! again??)
But your beautiful articles have inspired me to invest the time to try to name my symptoms and record them. As you suggested, I downloaded the Visible app.
I realised that by doing so, I'm validating my lived experiences, as I can't wait for the rest of the world to do that for me. Plus, there's potentially great power in being aware of what symptoms stay the same, what don't, and why.
Shame and ignorance of our bodies' capabilities and needs cast a wide shadow over our lives if we let them. By witnessing and accepting my reality as it is in this ever-changing now, I'm bringing light and hope into that darkness.
Your Substack is making that easier by providing a sense of community and a shared vocabulary for connecting with each other, our social circles, and the world.
That’s why I cried when I read it and why I immediately shared it with those closest to me.
Thank you for writing this. I remember when research came out about PEM I was so grateful to have evidence of what I was experiencing and called “The boomerang effect” of excercise.
Learning to accept the downtime without thinking about everything not getting done has helped my crashes and dips to process faster. Everything you've mentioned is what I've been doing too and it makes a huge difference.
Thank you for this. It's very succinct and really helpful to see how to define some of the experience of this condition. I'll be adding the system body scan to my morning meditation too.
When this thing started just over 4 years ago, I actually kept a daily spreadsheet of the key symptoms. I'd record my scores twice daily and the ranges were colour coded so it was easy to see patterns. Mapping this to my sleep was meant to give me something to take to my doctor to discuss possible options.
If course that never happened - when I finally got to a long COVID clinic all they were interested in was how many times I could sit/stand in a minute and what happen to my heart rate afterwards.
¯\(°_o)/¯
Geez. Well, your efforts are certainly not wasted. This language, and these trends, benefits us. I do this for myself, and it directly impacts my health.
One of the speakers at the NIH's RECOVER-TLC meeting today referred to PEM as PENE -- post-exertional neuroimmune exhaustion. I hadn't heard the term before, but even though it's more of a mouthful, it seems to capture something important. Just something to ponder...
Thank you so much for this. I can totally relate…I just told my husband, you are the first person, I have run into to who’s LC presents much like mine.
I have come close to defining mine similarly..but have never written it out…seeing it broken down in print…helps me, make more sense of it.
Totally off topic ..My new neurologist has suggested I try Adderal to help me “get though this, until my body works it out”
what do you think? (I hate to say it but…I feel somewhat desperate at the 2 1/2 year mark)
I don’t suffer from PEM but do experience fatigue (sometimes severe)that doesn’t necessarily follow exercise. A surprise has been that it seems to help brain fog (a lot). 10mg daily…second dose if I need it. I’d love to hear your thoughts on it.
Adderal was a game changer for me. I can’t function without it.
So glad I found you today- thank you 🙏
I hear you, Zeest, and thank you from the bottom of my heart for writing this piece. It can’t have been easy.
Apologies in advance for how long this response to your brilliant post is, but I felt like I would explode if I didn’t give the fireworks in my brain a voice.
Thank you for the phrase brain sludge! Thank you for highlighting that there is such a thing as cognitive labour and that even just having emotions can drain a person's energy! Thank you for using your platform and *your* precious energy to offer vocabulary, a shared syntax to communicate with the world and, most importantly, with those who matter to us!
I, too, am a physician and am tortured and at a loss due to the mismatch between my physical capacity and my enthusiasm and ambition for life.
I’ve had CFS for almost 30 years (since my early 20’s) and could not sustain a career because of it – although, at the time, I blamed and shamed myself.
It's rare to meet people who understand that when you say I'm tired and exhausted, you're speaking on a totally different level from what most people are familiar with. Rare to meet someone with a similar frame of reference.
Which is why those of us with invisible illnesses can feel quite isolated and misunderstood. Invalidated and dismissed at best, maligned at worst. And it seems to sting a little more when 'advice' comes from well-meaning people.
I wholeheartedly agree that self-care=survival (mentally and physically).
It has taken me decades to identify what was REAL self-care and what was CONFUSINGLY ABUSIVE self-talk/unrealistic expectations, exacerbated by doctors/psych's 'advice' (read medical gaslighting) to exercise.
An example of this gaslighting is the supposedly evidence-based gradual exercise programs specifically for CFS that were shoved down our throats, and which now the research is showing can cause more harm for the very reasons you describe in your post – that POST EXERTIONAL MALAISE IS REAL.
Thank you for spotlighting one of the scariest aspects of having this illness when you gifted us with the phrase “dynamic illness.” We never know how long (minutes? hours? days? months? longer?) it will take us to recover from a dip or a crash.
I was so excited when you said in your article, “I can't always predict what level of exertion will trigger an episode, however, and that's what makes living with long COVID so challenging”.
The impact of this unpredictability cannot be overstated, and the general public and the medical community have yet to fully appreciate it.
I often have to explain to people that although the' 20 spoons' analogy of living with CFS is good (having to weigh every spoonful expenditure of energy to decide whether the activity is worth the effort given the limited number of spoons we have per day), it's not quite accurate.
To truly capture the anxiety-ridden liminal space we live in, I add that we NEVER KNOW at any given time just HOW MANY SPOONS WE HAVE FOR THE DAY.
So, we are functionally robbed of our ability to plan our days and make the necessary arrangements that would allow us to remain somewhat socially engaged and financially independent (employed, outings, etc.).
It's a delicate dance. For me, there comes a point where I *have* to listen to my body, and I try not to get too close to that point because I don’t want to pay the price.
I can’t afford to if I want to participate in things in life that bring me joy as I can participate in so few of them already!
The grief of missing out can sometimes feel unbearable, and I’d love to take you up on your offer to write about your experience of this as well. I would read that in a heartbeat.
Once I became resigned to never feeling refreshed and the unpredictability of my symptoms, I reluctantly learnt that I can't wait for my body to tell me it's ready (e.g., pain-free or has energy) because it never will!
So, I limited my rest breaks, forced myself to get up and move (sometimes gently), and then decided if I really needed to keep resting, KNOWING THAT I RISKED CREATING AN ENERGY DEBT THAT I WOULD HAVE TO REPAY LATER. Aaaaaarrrrggghhhh!
The irony here is that the symptoms that most define these invisible illnesses, like fatigue, noise and light sensitivity, voice weakness, and muscle weakness, share the same vocabulary as what people consider to be everyday experiences that they can easily recover from. And it certainly doesn't help that how we look on the outside is rarely a true reflection of how we feel on the inside. Aaaaarrrgggghhhh!
So, when we go into what you so beautifully described as “lockdown mode,” i.e., the self-care required to recover from these symptoms when we experience them, it does not translate well socially as it comes across as a rejection of others or neglect, thus unwittingly compounding our isolation further. (is it too much if I wrote Aaaaaaaarrrrgggghhhh! again??)
But your beautiful articles have inspired me to invest the time to try to name my symptoms and record them. As you suggested, I downloaded the Visible app.
I realised that by doing so, I'm validating my lived experiences, as I can't wait for the rest of the world to do that for me. Plus, there's potentially great power in being aware of what symptoms stay the same, what don't, and why.
Shame and ignorance of our bodies' capabilities and needs cast a wide shadow over our lives if we let them. By witnessing and accepting my reality as it is in this ever-changing now, I'm bringing light and hope into that darkness.
Your Substack is making that easier by providing a sense of community and a shared vocabulary for connecting with each other, our social circles, and the world.
That’s why I cried when I read it and why I immediately shared it with those closest to me.
Thank you xxxxxx.
Thank you for writing this. I remember when research came out about PEM I was so grateful to have evidence of what I was experiencing and called “The boomerang effect” of excercise.