Best video I’ve ever watched for validating my PEM ! I need some specialized help with this. Where can I get handouts of the charts you use? Just make my own I guess… Anyhow, thank you so much for doing this video!!
This video has so much of the essence of the struggle. I explain the slippery slope to my therapists over and over again. Sure, I am able to do it but the effort will lead to a crash. Thank-you so much for sharing your expertise wrapped in experience. 🙏
I don't think there's enough emphasis in this talk on avoiding PEM as much as you possibly can in order to avoid living in a continuous state of symptoms exacerbation. A strategy for achieving this may well be to spend the majority of the time supine in radical rest breaking that rest with very short time limited part activities. So, to dress you might for example sit on the bed and put on your underwear, rest, your lower clothes, rest, your upper clothes, rest according to your energy and symptom exacerbation profile. This approach can be applied to most tasks. The talk is good at describing how to manage events which will put you into PEM. It's important this should not become your norm as that does then become boom and bust in my opinion and experience
I think it's also good for helping to identify triggers. In reality, many patients skip aspects of hygiene and other self care in order to meet care responsibilities or ensure more basic needs such as nutrition are met.
I've been using Visible with the polar verity sense armband and it's helped me TRY so much better. Sone days the same activity with eat through my pace points, while other days it barely uses any. I also use welltory and its helped me learn about parasympathetic and symptomatic nervous system and I know when I'm in symptomatic I will feel pretty good but eat through pace points. Then I diligently rest and my body switches to high parasympathetic swing and I will feel awful.
Agreed, that hr management and resting in between small movements can really help. We don't have to go into PEM. Why stand and brush your teeth when you can sit.
An addition might be to fully write out PEM, Post Exertional Malaise as I didn't see that but could have missed it as I cannot watch the screen all the time. Is PEM now a diagnosis or is it a symptom that hallmarks ME? Myself, if I have done the aggressive rest and self care etc, much as this video presents, there may actually be days when I can do things, properly paced, watching the signs, and actually not have PEM at all or very delayed so hard to match to a particular activity. It's different for everyone. I find keeping my hr below the guidelines for pacing ((220-age)*0.6 or 0.5 for extreme ME) helps so much. I have a massage stool that swivels in my kitchen and goes high enough to chop veg or make food. I have a swivel bath stool which I use for showering and for teethbrushing etc. Modifications are so important. One point, when making videos like this, talk even slower (or people can slow their players). Stop and encourage a few slow breaths and mindful connection to our bodies. Do we need to stop and finish the video in parts? I find even people with ME forget to keep fewer words and slow. Thank you and the best to you and your daughter.
I absolutely LOVE this video. The activities of daily living and “extra” activities are sometimes what I am living for and all I can do, and I like that you recognize how limited we can truly be! It’s so hard to relate this to people (like my family) that just the little things are big things to me. How do you suggest I interact with my kids and husband when I am so limited to what I can do? I feel like I’ve abandoned them and I’m not part of their lives anymore, because I live in my room at times. Help! I’m struggling to accept this and to participate in family life!
Best video I’ve ever watched for validating my PEM ! I need some specialized help with this. Where can I get handouts of the charts you use? Just make my own I guess…
Anyhow, thank you so much for doing this video!!
This video has so much of the essence of the struggle. I explain the slippery slope to my therapists over and over again. Sure, I am able to do it but the effort will lead to a crash. Thank-you so much for sharing your expertise wrapped in experience. 🙏
I don't think there's enough emphasis in this talk on avoiding PEM as much as you possibly can in order to avoid living in a continuous state of symptoms exacerbation. A strategy for achieving this may well be to spend the majority of the time supine in radical rest breaking that rest with very short time limited part activities. So, to dress you might for example sit on the bed and put on your underwear, rest, your lower clothes, rest, your upper clothes, rest according to your energy and symptom exacerbation profile. This approach can be applied to most tasks. The talk is good at describing how to manage events which will put you into PEM. It's important this should not become your norm as that does then become boom and bust in my opinion and experience
I think it's also good for helping to identify triggers. In reality, many patients skip aspects of hygiene and other self care in order to meet care responsibilities or ensure more basic needs such as nutrition are met.
Yup. Gotta prioritize
I've been using Visible with the polar verity sense armband and it's helped me TRY so much better. Sone days the same activity with eat through my pace points, while other days it barely uses any.
I also use welltory and its helped me learn about parasympathetic and symptomatic nervous system and I know when I'm in symptomatic I will feel pretty good but eat through pace points. Then I diligently rest and my body switches to high parasympathetic swing and I will feel awful.
Agreed, that hr management and resting in between small movements can really help. We don't have to go into PEM. Why stand and brush your teeth when you can sit.
An addition might be to fully write out PEM, Post Exertional Malaise as I didn't see that but could have missed it as I cannot watch the screen all the time.
Is PEM now a diagnosis or is it a symptom that hallmarks ME?
Myself, if I have done the aggressive rest and self care etc, much as this video presents, there may actually be days when I can do things, properly paced, watching the signs, and actually not have PEM at all or very delayed so hard to match to a particular activity. It's different for everyone.
I find keeping my hr below the guidelines for pacing ((220-age)*0.6 or 0.5 for extreme ME) helps so much.
I have a massage stool that swivels in my kitchen and goes high enough to chop veg or make food. I have a swivel bath stool which I use for showering and for teethbrushing etc. Modifications are so important.
One point, when making videos like this, talk even slower (or people can slow their players). Stop and encourage a few slow breaths and mindful connection to our bodies. Do we need to stop and finish the video in parts? I find even people with ME forget to keep fewer words and slow.
Thank you and the best to you and your daughter.
as a 50min video this needs chapters so people can skip to what they need
I absolutely LOVE this video. The activities of daily living and “extra” activities are sometimes what I am living for and all I can do, and I like that you recognize how limited we can truly be! It’s so hard to relate this to people (like my family) that just the little things are big things to me. How do you suggest I interact with my kids and husband when I am so limited to what I can do? I feel like I’ve abandoned them and I’m not part of their lives anymore, because I live in my room at times. Help! I’m struggling to accept this and to participate in family life!
🎥 Video Time Stamps are in the video description box- just click it open and pick the bit you want to watch or the spot where you left off last time