When to Pace and When to Push with ME/CFS Recovery - Lindsay Vine

[@yumzsid]

Raelen, this quite possibly THE most important video on your channel. All healing modalities talk about pacing but most explain it in either too stringent a way, or too nebulous. This video hits the mark perfectly. On a daily basis, I have a moment where I wonder if I'm doing too much and not following pacing properly, or restricting my activity and therefore not following brain retraining so this was an incredibly helpful video. I also appreciate the comment on watching out for the cellular threat response, as well as understanding that the use of energy falls under various buckets and must be managed as a whole on any given day. Loved it!!

[@revelation1215]

I also think pacing can become its own form of stress.

[@yumzsid]

@revelation1215 yes I feel that too! I use steps to monitor my level of effort and I found it interesting how they mentioned not to use stats as a way to pace because it makes it so inflexible.

[@peacefulhome3217]

Thoughts about and activities following the patterns of pacing is a form of brain training. You teach your brain, which amount or type of acitivity is ok for you and this figure goes deep in your unconcious mind and is connected to alarm signal patterns. When doing activities, it is so important to do it with trust, with joy, with calm. And when doing activities you can not teach your unconcious mind top down with rational words like " I am safe". This won't work. But the nervous system will react more directly to feelings, that suit the message of the words or breathing techniques or a mindfulness based state of consiousness. In the long run words will effect deeper and older parts of the brain, but words only are meaningless. It is their connection with specific feelings which will make changes possible. This is one big reason why NLP or brain training does not work. It can work for sure, it can have a big impact on recovery, but only if emotions are integrated correctly.

[@GeetaNadkarni]

I 100% agree!!! This is the info that I’ve been desperate to find and that I couldn’t quite piece together.

[@alberts4541]

Personally i totally underestimated the negative effects of mental activity. I thought that if i can't be physically active being mentally active would help me getting better because at least i'am doing something productive. But i was completely wrong and meditating instead helped me to stabilize my level.

[@jayverasummer]

I agree. Reducing screen time has been a huge part of my recovery and think this is why. I was using a ton of energy by being addicted to my phone.

[@leaperrins8373]

OMG! You know when there are just breakthrough moments in your recovery? This was one for me. It made me realise how many times a day I check my steps on my watch. Not because I don't want to go over, but because I feel like I have failed or gone backwards if I don't achieve a certain number. I'm going to remove the step counter from my display now and just look at it in the app once or twice a week out of interest. My recovery is becoming far more intuitive and whilst I have stopped pushing through so much, I don't think my attitude towards my steps has helped. Thanks so much!!

[@leaperrins8373]

I paused this video after making the above comment to get some food. As I went into the kitchen, I caught myself checking my steps, and thought 'they're a bit low, that's not good'. I reealised straight after what I had done, it's just so ingrained in me from when I was building fitness, before I got ill. I wasn't even aware of this until this video, and did it straight after! Blimey, thanks again. Choosing a step free watch face right now!

[@lynb87]

I struggled to get rid of the fear because whenever I got rid of it, I would fail to pace and overdo it. I'm finally improving at that. Fear has been replaced by simply a knowledge of what happens if i overdo it.

[@kayleighmitchell8853]

Thanks to somatic tracking I have a healthy respect for the symptoms. A non stressful "fear" but when I feel symptoms my aim is to not panic, not get despondent or spiral. Calmly resting through them with positivity speeds my recovery through crashes

[@miezeken]

Raelen this is your best content I’ve seen on your channel. No waffle or repetition here

[@tammyprovost8320]

Excellent advice! Thanks for simplifying the concepts of both pacing and brain retraining.

[@josephashwell8658]

As the song goes - It ain’t what you do it’s the way that you do it 🎵 …this rings so true . Great tips and a great format , these shorter videos really work - thanks

[@jayverasummer]

The different types of energy make a lot of sense. I reached a point where I could jog for 1-2 hours no problem, but 1-2 hours was also my limit for social interaction and working. This was hard to explain to people, because a person who can jog for two hours but says they can’t hang out for more than two hours appears to be lying. But I realize by focusing primarily on physical capacity I increased that much faster than social capacity. I’d be curious to hear about how heart rate variability measures help with pacing. I’m sure you’ve heard of the visible app. Steps are not created equally but HRV would provide a more personalized look at how much energy a person has. I’d love to see an interview with someone from the visible app team or the founder!

[@HeleneMadsen-f6l]

Thank you so much, both of you! Such an important topic and really good advises. And its so lovely to see and hear Lindsay again - so clever and such a wonderfull personality!

[@MarianneLandry]

Thank you so much! I love those reassuring vidéos about the nuances and layers of mindset in recovery.

[@spruceysarah]

I appreciate this video so much! Definitely a balance that I feel I'm always struggling with; learning to do what I can, when I can definitley takes a lot more awareness than just trying to make steady progress every day.

[@candymountain6325]

Very useful conversation! Thank you! Raelen, could you interview her podcast partner? I find that there aren’t many stories out there of people who have focused on building their capacity for work first and physical capacity later.

[@marcelguldemond2523]

Thanks so much for this one! I have been struggling with this question especially after yet another covid reinfection. And especially the note about not ignoring fatigue, not trying to push or retrain the fatigue. Basically, that it's ok to allow myself to just rest for a period of months after a reinfection, to apply pacing to the fatigue for now, and then start trying to increase the activity later when I feel more ready.

[@johnframe1117]

Lindsay - thank you so much for your explanation! super helpful esp about listening to fatigue versus other symptoms that you can retrain

[@Kaz-fb9lz]

Thank you, I struggled to be consistent with pacing and felt like I wasn’t doing it right, but the flexible, adaptive approach you discuss is much more doable.

[@TheLadyCosmo]

Fantastic video, I was struggling with pacing in particular and now I feel much more confident going forward. Thanks!

[@gabrielleg.1347]

Fanatic video with such important information! Loved this “bite size” format too!

[@juliehorsegirl]

Thanks! This is something I really needed!

[@nolamayer4101]

Thank you both so much, such really good tools here to add to my kit, especially the pacing 🥰

[@yourgratefulguide]

Great advice and nuggets of wisdom here from two awesome ladies who have been there and are on the other side 🙌🏻🙌🏻🙌🏻

[@DottieBengo]

Fab video. Just what I need at the mo.

[@laurenturner7265]

Distracted by how awesome Realens jacket is 😂😂 but also great video this is really really something I've been wondering. As I learn more about brain retaining wondering how to incorporate it to my recovery alongside the knowledge of the pathophysiological problems in the body with ME/CFS. I think it's definately a skill to learn and this is a great place to start

[@RaelanAgle]

❤️😘❤️

[@baileystruss7319]

I've gone into activities trying to use the Sarno, Buglio etc approach to symptoms of me/cfs. It has ALWAYS failed and caused me PEM. It worked for back pain and other things but not thus!

[@louis_cole]

PEM is not a failure. Symptoms are not failure. You need to work with the best kind of responses to PEM and symptoms in order to gradually teach the brain they are not necessary and that normal activities are safe. We can't expect to find any one approach that will quickly stop PEM/symptoms from happening after activities. Every recovery story requires working through PEM and symptoms in the right ways to teach the brain safety.

[@revelation1215]

Raelan talked about how she did like one minute of exercise a day for a week. It’s a gradual process to let the body know you’re safe. Have you tried polyvagal reset by Sukie Baxter?

[@kayleighmitchell8853]

Surely too much pem sets you back. But you mean avoid pem if possible,, but working through the inevitable ups and downs with different responses?

[@efi4930]

BEAUTIFUL ❤ THANK YOU 🌹

[@laurelpetty9212]

Great job Raelan- looking forward to more of these 🎉❤

[@alexandrecouture2462]

Very good video!

[@karenschindler2871]

Excellent video!!! So helpful

[@myrtlekeyhole625]

Getting a dog is my motivator too! 😊

[@alexandrastrickmann8056]

Thank u very much for this! 💖🙏🏻

[@syfu-yd5zy]

Thank you so much❤

[@myfamily7001]

LOVE❤❤❤❤❤❤ this, thanks ladiesb

[@RicoTheUnknown]

Raelan, do you do coaching one to one at all?

[@rainbowwarrier1469]

Are your advices to people with light Me/Cfs? Could you tell through the Bell Scale how to do your recommendations? I’m happpy if I’m enough fit and have enough energy to leave my home for maximum half an hour in the week. Sometimes it takes more than a week until I’m able to go out. I understand the power of thinking, I actually got my twins through my power of thinking since I was a kid I wished for twins. So since 5 years I got Me/Cfs Bell 25-30. No computer, no Tv, no book reading, no phone calls..just a few examples. There is no evidence to be able to do real pacing..

[@alieheadley7238]

Hi Raelen! I have a question, I feel like resting makes me feel worse with brain fog/confusion than when I’m active, is this normal?

[@briechilli4496]

Thank you. Do you recommend walking or physical movement even if one is experiencing insomnia (sleeping only 3 or 4 hours per night for months) ?

[@revelation1215]

Have you considered a sleep aid? I have heard its helpful for a short period to get the restorative sleep you need if other forms of stress reduction are not helping.

[@ccc2784]

When I push too much or don’t even push that much but do some minimal activity I crash with amnesia. I have no idea why, but it’s scary because I don’t remember where I am or what’s going on. I was driving to go buy something from fb marketplace last night and I had an attack like a few min out from their house. I got to their house and forgot what I was buying and my name and when I left like 5min later I was driving and couldn’t remember if I actually picked up the stuff so I pulled over the car and checked my trunk and it was all there. I have felt like I’m in a daydream ever since with forgetfulness and things smell different and feel like I have 0 energy. Has anyone else ever had this sort of daydream feeling and amnesia/memory loss?

[@mrjackolanterns]

Did you have Covid? It sounds like depersonalization/derealization episodes. I am a long covid sufferer for 2 years now and I get crazy depersonalization/derealization. I could be doing something and out of nowhere I would get a cold sweat and instantly feel like I wasn't even real, or like I was dreaming. Not so much with the amnesia though.

[@ccc2784]

@@mrjackolanterns these started right after i tested positive for Covid. I never fully recovered from Covid and went straight from testing positive to testing negative and still having loads of symptoms that I still deal with more than a year later. Never had them before. I feel the same or similar. I feel a warm wave and a lot of fatigue and disconnection and memory loss. It’s crazy and I’m literally disabled as a result.

[@mrjackolanterns]

@@ccc2784 Yes. A warm wave. Exactly. I never had any issues like this before covid either. It sounds like we are all in the same boat. It's the strangest damn feeling ever when you experience it. I feel like I'm dreaming of being myself or something when it happens.

[@evolvingbutterfly]

I experience dpdr like this. You’re not alone

[@briechilli4496]

Thankyou, do you recommend walking or physical movement be done even if you experience insomnia, (sleeping only 3 or 4 hours) ?