This post and comments are so helpful. I’m on this journey as well. I’m still functional enough to still go to work, but only because it is not full time and I’ve had to adjust hours. I have had to drop doing stairs and all the exercise I was doing 2 years ago. I’m noticing how weak I’ve become, and it makes my joint pain worse. It’s hard to imagine running.
I’ve recently returned to trying 2.5 minutes of cardio and up 10-20 min yoga poses/mobilizing joints to keep my shoulder moveable. On bad days I do the poses/mobilizations in bed.
Ugh - the brain fog! Makes it so hard to even set a goal to improve.
Here’s to s l o w improvement, and not overdoing it!
Thank you, Paul, for further clarification. I too want to use pacing as an actual therapy and not just as a way to cope. I can cope by lying in bed all day and have it kill me that way, but how boring. I too was at a high level of fitness at the start, in 2015, but I did too much crashing and pushing along the way. But if I can be dumb enough to get this bad by going about it all wrong, then I can be smart enough to maybe, actually improve. Ok, well it wouldn't be me being smart enough, it would be me following your example backed by Midge’s and your own clarifications. But I will be steadfast and stubborn enough. I can't tell you how much you have helped me in so many ways through these years. I wish you continued improvement! If it won't work for me, it has to work for you! You're such a badass, even if you don't feel like one. ❤️❤️ Jody
Hi Midge, you have made it so clear. I think you are completely right and I couldn't see or understand through all the confusion and brain fog. I don't know that I eventually would have so I can't thank you enough. It seems the big difference is exactly what you said about no external targets but relying on one’s inner clues. I hope things are going as well for you as for Paul.
First let me congratulate you on being able to run at all! I know firsthand the whole added agony of this illness is knowing exercise will kill you, but knowing also that no exercising will kill you. And now, no pacing. I'm still not sure what the difference between what you are doing and pacing is, other than the knowledge that pacing doesn't "cure" you. Am I understanding this correctly?
I am finally in the dreaded space of any movement, including walking to the mailbox, sends me into a crash. Movement, stressful conversation, thinking too much all seem to precipitate a crash, especially moving around too much. I've been reading everywhere that crashing and then moving forward once you feel better again is a sure way to make this thing worse. And that is what happened here. I crashed, recovered, moved mildly on, crashed again, etc. So I have hit bottom but how to get back up is still elusive to me. Obviously avoiding crashes is the answer, but what is it the answer to? Just not crashing? If so, here I am doing nothing and surely deconditioning with each day. But you have been able to add on a bit to what you can do, obviously without crashing. It seems to me you are getting better! I suppose I can add a little to "doing nothing" each day, being careful, but how is that not pacing? I'm confused! f
If you answer, please remember the hideous brain fog if you are thinking, "she just doesn't get it!" I've been an athlete all of my life so I understand how you felt and how happy you must be. And I am happy for you! I don't even want to run anymore, just walk without consequences, you know?
That's great progress. How are you monitoring your effort during runs? It will be important to ensure you are well within the aerobic zone. You can use Dr. Phil Maffetones Maximum Aerobic Function (MAF). It involves training at an intensity that allows you to develop your aerobic system without going into anaerobic metabolism. Your correct heart rate can roughly be calculated by subtracting your age from 180 and adjusting for certain factors like fitness level and health.
Some peoples aerobic systems are so neglected (thrashed) that they often have to just walk to remain in the aerobic zone. They can be overtrained in this case, called aerobic deficiency syndrome (ADS). It can be very slow progress to remedy this if you have it, but a well worthwhile journey in the long run.
This post and comments are so helpful. I’m on this journey as well. I’m still functional enough to still go to work, but only because it is not full time and I’ve had to adjust hours. I have had to drop doing stairs and all the exercise I was doing 2 years ago. I’m noticing how weak I’ve become, and it makes my joint pain worse. It’s hard to imagine running.
I’ve recently returned to trying 2.5 minutes of cardio and up 10-20 min yoga poses/mobilizing joints to keep my shoulder moveable. On bad days I do the poses/mobilizations in bed.
Ugh - the brain fog! Makes it so hard to even set a goal to improve.
Here’s to s l o w improvement, and not overdoing it!
Thank you, Paul, for further clarification. I too want to use pacing as an actual therapy and not just as a way to cope. I can cope by lying in bed all day and have it kill me that way, but how boring. I too was at a high level of fitness at the start, in 2015, but I did too much crashing and pushing along the way. But if I can be dumb enough to get this bad by going about it all wrong, then I can be smart enough to maybe, actually improve. Ok, well it wouldn't be me being smart enough, it would be me following your example backed by Midge’s and your own clarifications. But I will be steadfast and stubborn enough. I can't tell you how much you have helped me in so many ways through these years. I wish you continued improvement! If it won't work for me, it has to work for you! You're such a badass, even if you don't feel like one. ❤️❤️ Jody
Hi Midge, you have made it so clear. I think you are completely right and I couldn't see or understand through all the confusion and brain fog. I don't know that I eventually would have so I can't thank you enough. It seems the big difference is exactly what you said about no external targets but relying on one’s inner clues. I hope things are going as well for you as for Paul.
First let me congratulate you on being able to run at all! I know firsthand the whole added agony of this illness is knowing exercise will kill you, but knowing also that no exercising will kill you. And now, no pacing. I'm still not sure what the difference between what you are doing and pacing is, other than the knowledge that pacing doesn't "cure" you. Am I understanding this correctly?
I am finally in the dreaded space of any movement, including walking to the mailbox, sends me into a crash. Movement, stressful conversation, thinking too much all seem to precipitate a crash, especially moving around too much. I've been reading everywhere that crashing and then moving forward once you feel better again is a sure way to make this thing worse. And that is what happened here. I crashed, recovered, moved mildly on, crashed again, etc. So I have hit bottom but how to get back up is still elusive to me. Obviously avoiding crashes is the answer, but what is it the answer to? Just not crashing? If so, here I am doing nothing and surely deconditioning with each day. But you have been able to add on a bit to what you can do, obviously without crashing. It seems to me you are getting better! I suppose I can add a little to "doing nothing" each day, being careful, but how is that not pacing? I'm confused! f
If you answer, please remember the hideous brain fog if you are thinking, "she just doesn't get it!" I've been an athlete all of my life so I understand how you felt and how happy you must be. And I am happy for you! I don't even want to run anymore, just walk without consequences, you know?
Thanks for listening,
Jody Eastman
That's great progress. How are you monitoring your effort during runs? It will be important to ensure you are well within the aerobic zone. You can use Dr. Phil Maffetones Maximum Aerobic Function (MAF). It involves training at an intensity that allows you to develop your aerobic system without going into anaerobic metabolism. Your correct heart rate can roughly be calculated by subtracting your age from 180 and adjusting for certain factors like fitness level and health.
Some peoples aerobic systems are so neglected (thrashed) that they often have to just walk to remain in the aerobic zone. They can be overtrained in this case, called aerobic deficiency syndrome (ADS). It can be very slow progress to remedy this if you have it, but a well worthwhile journey in the long run.
JK