Understanding the neuro-immunological mechanisms behind ME/CFS was crucial for my recovery from Long COVID. And I completely changed my mind on recovery stories
Hi Nicole! I am so inspired by your posts. I am based in Berlin and have severe ME/CFS (from unknown origin). I am slowly recovering and am using, like you did, different approaches. I find that it is the mix that brings my body slowly back to health. I am very curious about your journey rebuilding your physical stamina. I have been able know to significantly reduce my cognitive symptoms, but physical exercise is still a big problem.
Hey Nuria! Glad are also recovering!! I'm going to share more about that in detail soon, but in short - I used the mental tools I did for the cognitive symptoms too, and then very, very slowly and carefully expanded. 1% at a time. I will share my recovery protocol, but I used the CHOP POTS protocol physiotherapy exercises and started with 1 bridge pose, then a couple of days rest. You might not need to go that low if you're not bed bound. Just do whatever doesn't make you crash, but do that every day or every other day, depending what your body tolerates. Very slowly but consistently. Then expand, going lower again if it was too much. Curious what you've tried so far?
Interesting, thanks for the info! Hadn't heard of CHOP POTS before. Did you just do the strengthening exercises or did you also modify the cardio protocol to make it work for you? I can already do two bridges a day, woot woot!
My physical work has concentrated so far on getting back the normal mobility at home. I started with 3 walks a day in the apartment (2 to 10 minutes, depending on the day), then once my POTS got better and I could get up as often as I wanted, I started doing more normal movement. Now I'm able to care for myself and not ask anyone to bring me anything, but I haven't been able to do that *and* the walks, so my endurance is way down. I have the impression that the "normal" movements like making tea, getting up to get something, etc., require actually more energy than just walking.
I felt now like I could start strengthening exercises and tried half an RRR class from Suzy Bolt, but crashed after that (little crash, but still). So now I am taking the exercises of that class and starting with just 2 per day, one in the morning and one in the afternoon.
I find the hardest thing to be the consistency, because if I crash or have lower energy for other reasons, I have a hard time building up the progress I had made again. I've tried several times to start walking the stairs again and always had to stop for some reason (with a maximal gain of 5 steps), so now it seems like a much bigger task than it used to.
I am trying now the 10 marbles technique by Raelan Agle and that works nicely. I hope it will help me with consistency, so that even if I have lower energy, I do 10 kinder movements, but my brain still registers that we want to move regularly. I might try to integrate the CHOP POTS exercises in there :)
Some books here I haven’t heard of yet, so thanks for that! In addition to the books I listed in my recovery series, I am currently reading one called Reverse Therapy, which I heard about in a recent Raelan Agle video. It’s very similar to the other brain rewiring programs/books, with some variation of course. I only just started it but I’ll let you know how it goes.
Hi there. I found your substack from your comment on a post in the Long Covid Support FB group. The post i read resonated with me so I subscribed.
I've been thinking a lot about brain training programs recently and your post lists a few that I've heard of and some that i haven't. While i know that my long covid illness is physical, I also know that my reaction to it and how I feel each day is mental. And my mental state often has a big influence on my physical state.
Essentially I'm wondering if i could stop worrying, obsessing, ruminating, going down anxiety rabbit holes, etc... would I put myself into a better position to recover physically (while taking all of my supplements, etc...). If I could figure out how to change my mindset, could it help my body.
Problem is, i recently developed PEM - both physical and cognitive (the cognitive part really sucks). So I'm concerned that I may not be able to do a brain retraining program that requires looking at a screen or listening to videos for a long time each day.
How much time or how involved were the sessions for the program you did? Were the lessons digestable? Can you stop and start at your own brain tolerance?
Thanks so much. Look forward to reading more posts.
Hey Stacy, thanks for subscribing, and I'm glad you found my Substack. Re your question-- I'll try to write a lot more about that in the next weeks/months, but the short answer is, it really helped me with that. It did exactly what you said-- our mental state can influence the physical. The physical illness and hardships of course influences our mental state, too. Learning to shape my mental state irrespective of what was happening gave my body the space to start repairing itself.
The program I did was maybe 30 minutes of videos a day (I forgot how much exactly), plus an hour or so of daily mindfulness practice (which I did anyway), so it's definitely a commitment. But I found it easy to follow along, you can pause, and I tried to watch during times of the day that I was feeling a little more energy and cognitively able (usually afternoons and evenings for me were a little easier than in the morning). I also tailored it to my needs-- e.g. I did breathwork instead of meditation most days. There were days where I wasn't able to watch the video at all and that was fine too, you can do it at your pace. Hope this helps for now, let us know how you do, if you end up going for it! Rooting for you :)
Hi Nicole! I am so inspired by your posts. I am based in Berlin and have severe ME/CFS (from unknown origin). I am slowly recovering and am using, like you did, different approaches. I find that it is the mix that brings my body slowly back to health. I am very curious about your journey rebuilding your physical stamina. I have been able know to significantly reduce my cognitive symptoms, but physical exercise is still a big problem.
Hey Nuria! Glad are also recovering!! I'm going to share more about that in detail soon, but in short - I used the mental tools I did for the cognitive symptoms too, and then very, very slowly and carefully expanded. 1% at a time. I will share my recovery protocol, but I used the CHOP POTS protocol physiotherapy exercises and started with 1 bridge pose, then a couple of days rest. You might not need to go that low if you're not bed bound. Just do whatever doesn't make you crash, but do that every day or every other day, depending what your body tolerates. Very slowly but consistently. Then expand, going lower again if it was too much. Curious what you've tried so far?
Interesting, thanks for the info! Hadn't heard of CHOP POTS before. Did you just do the strengthening exercises or did you also modify the cardio protocol to make it work for you? I can already do two bridges a day, woot woot!
My physical work has concentrated so far on getting back the normal mobility at home. I started with 3 walks a day in the apartment (2 to 10 minutes, depending on the day), then once my POTS got better and I could get up as often as I wanted, I started doing more normal movement. Now I'm able to care for myself and not ask anyone to bring me anything, but I haven't been able to do that *and* the walks, so my endurance is way down. I have the impression that the "normal" movements like making tea, getting up to get something, etc., require actually more energy than just walking.
I felt now like I could start strengthening exercises and tried half an RRR class from Suzy Bolt, but crashed after that (little crash, but still). So now I am taking the exercises of that class and starting with just 2 per day, one in the morning and one in the afternoon.
I find the hardest thing to be the consistency, because if I crash or have lower energy for other reasons, I have a hard time building up the progress I had made again. I've tried several times to start walking the stairs again and always had to stop for some reason (with a maximal gain of 5 steps), so now it seems like a much bigger task than it used to.
I am trying now the 10 marbles technique by Raelan Agle and that works nicely. I hope it will help me with consistency, so that even if I have lower energy, I do 10 kinder movements, but my brain still registers that we want to move regularly. I might try to integrate the CHOP POTS exercises in there :)
Oh, and yoga. Very gentle yoga is great. I find it actually gives me more energy!
Some books here I haven’t heard of yet, so thanks for that! In addition to the books I listed in my recovery series, I am currently reading one called Reverse Therapy, which I heard about in a recent Raelan Agle video. It’s very similar to the other brain rewiring programs/books, with some variation of course. I only just started it but I’ll let you know how it goes.
Awesome, thanks! Keep me posted. I'll check out your recovery series too - do you have a link by chance?
Hi there. I found your substack from your comment on a post in the Long Covid Support FB group. The post i read resonated with me so I subscribed.
I've been thinking a lot about brain training programs recently and your post lists a few that I've heard of and some that i haven't. While i know that my long covid illness is physical, I also know that my reaction to it and how I feel each day is mental. And my mental state often has a big influence on my physical state.
Essentially I'm wondering if i could stop worrying, obsessing, ruminating, going down anxiety rabbit holes, etc... would I put myself into a better position to recover physically (while taking all of my supplements, etc...). If I could figure out how to change my mindset, could it help my body.
Problem is, i recently developed PEM - both physical and cognitive (the cognitive part really sucks). So I'm concerned that I may not be able to do a brain retraining program that requires looking at a screen or listening to videos for a long time each day.
How much time or how involved were the sessions for the program you did? Were the lessons digestable? Can you stop and start at your own brain tolerance?
Thanks so much. Look forward to reading more posts.
Hey Stacy, thanks for subscribing, and I'm glad you found my Substack. Re your question-- I'll try to write a lot more about that in the next weeks/months, but the short answer is, it really helped me with that. It did exactly what you said-- our mental state can influence the physical. The physical illness and hardships of course influences our mental state, too. Learning to shape my mental state irrespective of what was happening gave my body the space to start repairing itself.
The program I did was maybe 30 minutes of videos a day (I forgot how much exactly), plus an hour or so of daily mindfulness practice (which I did anyway), so it's definitely a commitment. But I found it easy to follow along, you can pause, and I tried to watch during times of the day that I was feeling a little more energy and cognitively able (usually afternoons and evenings for me were a little easier than in the morning). I also tailored it to my needs-- e.g. I did breathwork instead of meditation most days. There were days where I wasn't able to watch the video at all and that was fine too, you can do it at your pace. Hope this helps for now, let us know how you do, if you end up going for it! Rooting for you :)