149 - Resilience and Recovery: Dr. Eleanor Stein on Navigating Chronic Illness and Long Covid

Dr. Eleanor Stein's journey is one of resilience and transformation and her story is both personal and powerful. Dr. Stein shares how her experiences have shaped her approach to patient care and education. Her insights into societal myths around illness & recovery offer a refreshing perspective, especially for those navigating the complexities of living with long-term health challenges.

We shine a light on the essence of self-management & body awareness. Dr. Stein articulates the importance of respecting our bodies by recognizing and addressing its needs, from managing chemical sensitivities to balancing symptom acknowledgment with positive distraction techniques. Harnessing creativity, using mood-elevating activities are just some of the strategies we explore to empower individuals in their health journey.

Hope emerges as a central theme in our discussion, as Dr. Stein shares strategies for fostering a positive belief in recovery. We explore practical lifestyle changes, like embracing natural light cycles and consuming unprocessed foods, as part of a holistic approach to health. Dr. Stein's extensive experience offers valuable resources and insights, positioning listeners to optimally navigate their path to healing.

Free booklet on "Hormesis" for listeners of the Long Covid Podcast as well as Dr Stein's upcoming events etc.

For more information about Long Covid Breathing, their courses, workshops & other shorter sessions, please check out this link

(music - Brock Hewitt, Rule of Life)

Chapters

• 0:00 Navigating Long Covid With Dr
• 10:53 Biology of Self-Management in Health
• 24:18 Shifting Focus for Self-Management
• 32:30 Self-Management Strategies for Chronic Illness
• 49:26 Practicing Self-Management for Better Health
• 58:02 Hope and Healing in Recovery

Transcript

Jackie Baxter: 0:55

Hello and welcome to this episode of the Long Covid Podcast. I am delighted to be joined today by Dr Eleanor Stein, who is a medical doctor and a psychiatrist who's spent the last 25 years devoted to all things ME-CFS, fibromyalgia and now, of course, Long Covid as well, so I'm super excited to discuss all of this with you today. A very warm welcome to the podcast.

Eleanor Stein: 1:26

Thank you so much, Jackie. It's a pleasure to be on.

Jackie Baxter: 1:29

Yeah, I'm really excited about this. Before we kind of dive down the rabbit hole, can you just say a little bit more about yourself and maybe what brought you to where you are now?

Eleanor Stein: 1:41

Sure, well, like so many people in this field, what brought me to it was my own personal experience. I had totally different, totally different aspirations when I started medical school. I wanted to be a cancer researcher, because I had some cancer in the family. And then, in my second year of psychiatry resident well, anyway, some things changed, I guess. Obviously, between wanting to be, oh I know what changed I worked in a cancer research lab two summers in a row and I found out I'm hopeless at bench research, like I almost got fired because I ruined so many experiments. So that was a clue in undergrad that maybe lab research wasn't really the route for me and maybe clinical work would be a better route. And then, anyway, I ended up in psychiatry. Why? Because, interestingly enough, I realized even in, you know, the early days of medical school that psychiatry didn't have any tests. I would have to rely on my clinical skills. I would have to actually get to know my patients, form a relationship with them, talk to them, follow them over time to really try to understand what was going on. And that has, I would put, I would say put me in really good stead.

Eleanor Stein: 3:10

For my next big switch was to, which was to move from psychiatry to complex chronic disease. And the reason I made that switch is because in my second year of residency, which was 1989, so that's orthostatic intolerance, dizziness, sweating, extreme post-exertional malaise I couldn't, you know, push even a little bit. You know, I went from being able to exercise for hours a day to barely being able to walk two blocks to the grocery store. I couldn't think. Clearly that was probably one of the most problematic symptoms and I needed excessive sleep, like I was sleeping 16, 18, 20 hours a day. I would just get up, feel totally unrefreshed, have something to eat, totally unrefreshed, have something to eat and at that time then feel so sleepy I would just fall back asleep for several more hours.

Eleanor Stein: 4:29

So when I tried to get help back in 1989, some of you know that 1988 was when the first CDC or Centers for Disease Control definition of chronic fatigue syndrome came out, as it was then called, and it wasn't very helpful. I mean, I could see myself in it but nobody knew anything, right for a one-year-old condition. I'm sure people like if you're listening to this and you have long COVID, you can relate to that when you've got a new condition nobody really knows how to help and so I, by necessity, was forced on the path of trying to figure it out myself, and it took me eight years to find someone who knew something, who was a little bit farther along the path than me. That was a family physician in Calgary, so I literally moved to Calgary because I was so hungry for knowledge and I needed to learn what she knew. And this was a physician who also had the illness right, and so she believed in it, had been researching it already for many years and was just a few steps ahead of me, and that taught me. She taught me the basic self-management skills that allowed me to cope in my life, because up until that point I was on the burn crash cycle that many of you are probably so familiar with.

Eleanor Stein: 6:01

My goal as soon as I got sick was to practice and run a marathon, you know. So that shows you where my head was and how unlikely that approach was going to be to work for me. But I was stubborn. I am stubborn, and so it took years of listening to this colleague working with her, seeing, you know, hundreds of patients, to really get deep in my head. One that self-management, while not a cure, is necessary, right, people cannot get better from a biomedical condition if they're not doing things to help support their body. So probably my first 10 years was a bit of a nightmare, just trying things that were, in retrospect, really stupid, suffering the consequences, doing it again and again and again, because I was too stubborn and I really didn't want to believe that I had to make major changes to my life, my daily life, if I wanted to get better.

Jackie Baxter: 7:13

And I think you know I mean, I can certainly relate, I think so many other people probably as well you know that, yeah, push that. Yeah, push, crash, push crash, but you don't. If you don't know any better, then you know it's like you, you can't. You know, I blame myself in some ways for for making things worse. And then it's like, well, hang on. No, I didn't do it because I thought it was the wrong thing. I did it because I thought it was the right thing. I mean, like you, I was very stubborn and it took me a wee bit of time to kind of accept that maybe this wasn't working. Um, but you know, you don't do things with the intent of doing yourself harm, do you?

Eleanor Stein: 7:53

um, and it's what's out there in society. So one of my big themes right now you know, in some of the blogs that I write is uncovering myths. Right, we've been taught so many things that are turning out to be totally wrong. I won't go down that rabbit hole, but just to say stay tuned to my blogs because I'm you know, I've written. Well, obviously, exercising your way out of ME or long COVID is one example of that myth, but it's so pervasive in society it's really hard to be confident of taking another path If that's all you hear. Right, go to boot camp, push yourself, you can get through this. No pain, no gain. All of those mottos are so pervasive it's really hard to have enough self-confidence to say you know what? I've tried that for the last 10 years. It really didn't work. I'm going to trust myself more than I'm going to trust societal messages and even medical science, and I'm going to do what I think is right through trial and error and observation. That takes a lot of courage.

Jackie Baxter: 9:04

Yeah, I mean you're going against, as you say, what society tells you. Possibly what you've ever done in your entire life, I mean, certainly that was me. I'd only ever pushed my way through things, and you know, to that point it kind of worked and you know, it was really truly tuning into and listening to our own bodies, which is probably not something that we had done very much of, if any, um beforehand. Again, certainly that was my experience, um, so, yeah, it does, it is, it's, it's difficult to do and it's certainly probably not what comes naturally to us. I think, think, or certainly a lot of us. Now, you said you mentioned self-management and this is something you know. A lot of people talk about this, a lot of people get, you know, slightly upset about the idea of self-management and I think it's partly, you know it can feel like you're being fobbed off. Oh, we don't have a cure, but you know, go manage your own condition, sort of thing. Now, what does self-management actually mean?

Eleanor Stein: 10:48

Great. I hope I can do justice to that very good question. In my way of thinking of things and I guess different people may have different definitions, may have different definitions it's everything that I do every day that respects my body's needs and limitations, as much as I'm aware of them and can you know just and also, sometimes I'm aware of it but I still can't do it Because there's certain things in the way. So, trying to give my body what it needs, if I so, just yesterday we had a great talk with Dr Eric Gordon. He's one of the people in on the ground floor of the cell danger response and he talked over and over and over about making the body and the cells and the mitochondria feel safe.

Eleanor Stein: 11:45

So if our brain doesn't feel safe, if we, for example, have chemical sensitivity and every time we're exposed to a chemical we get tons of symptoms, our brain naturally connects any kind of smell with danger and because it's hard to avoid smells, we're constantly being thrown into a state of panic or danger. So this is an example where self-management would include a couple of things. Partly it would include trying to lessen some of the exposures so that I'm not just constantly being thrown into this danger response, but also potentially and I know this is very controversial, so maybe I better not even to mention it but also to let my brain know that very low levels of chemicals are probably not dangerous. So sometimes what happens is it's a combination of a very valid biomedical, physical reaction to some situation a food, a chemical exercise, for example. But then there's sometimes additional layers that grow on the onion where our neurotransmitters associated with danger, and it will potentially perpetuate or prolong symptoms.

Eleanor Stein: 13:34

So self-management, I would say there's parallel levels. The first level is observing and coming to understand my body, believing it right, because I observed my body for many years but I didn't believe it. I thought I was smarter and I could overcome. So believing it and then being self-loving enough to say you know what? I hear you body, I'm actually going to give you the things that you're asking for, whatever that might be certain types of food, enough rest, enough social connection. We're all different, what our bodies and souls are craving and yearning for. So there's that actual fulfillment of our needs. And then there's, for some people, a kind of a second level of working on our mind and our brain to allow us to give our body what we need. That's what I struggled with. I could see that exercising more was hurting me, but I didn't want to believe it. So I had to work on my head to shift my thinking, to say you know what? I'm going to be more accepting of the reality I find myself in and quit trying to fight it.

Jackie Baxter: 14:58

And quit trying to fight it. I mean, I love this idea. We're taking a bit of a tangent here, but I love this idea of acceptance because this was something that I really, really struggled with.

Jackie Baxter: 15:10

You know, I can't remember who it was, but there was someone that said to me oh, you've got to find acceptance in your situation or with your condition or something like that, and I was just like nope, nope, nope, nope, nope, nope, nope, not a chance. Because I thought they were telling me I mean, maybe they were. I thought they were telling me that I had to accept that this was my life and that I was never going to get better and there was no way I was ever going to accept that. You know, I would, you know, quite happily run myself at the wall and keep fighting and doing all the wrong things, but I was never going to accept it and I think for me it was. I think, as you so beautifully put, accepting, kind of in this moment, that this is what it is. Therefore, exercising my way out is not going to work in this moment. Actually, what I need to do is to stop fighting it and allow myself to give my body what it needs, and what it needs is not trying to exercise its way out as an example. You know there's plenty of other examples of things that don't work as well.

Jackie Baxter: 16:10

Um, so, yeah, I love this idea of giving the body what it needs, but this is really hard, isn't it? Because sometimes, I mean, I think a lot of us have never listened to our bodies in our lives and, you know, that may have been a contributing factor for us being unwell in the first place. But we certainly aren't good at listening to our bodies and when we do, it's a quite uncomfortable experience, isn't it? Because our bodies are screaming at us. We've got symptoms, we've got all of this. We're probably emotionally very distressed as well because we're not well. So when we try to listen into our body, it's just like, oh, my goodness, I don't want to do that.

Eleanor Stein: 16:55

So trying to kind of do that in a way that even feels remotely safe as well is really difficult to do, isn't it a really important balance and again, I may be going out way on a limb here between we need to listen closely enough to give our bodies what we need. So I'll just, you know, we've talked about the example of exercise. Let's maybe take another self management example of sleep. So I may know that I need a certain amount of sleep to feel well, and it may be really challenging to make that happen in a day, so that would be like another. You know, sleep is big right. Activity, sleep and diet are probably the big three. Routine works the best for me, and then prioritizing that to make it happen would be an example of self-management. On the other hand, if we spend all of our time focused on our symptoms, then that gives our brain the message that we're really in danger, that the only important things in life are problems. Right, and the brain is excellent at that and it perseverates or just recycles and recycles, looking for more and more evidence of problems management to work on these two levels at once, where, on the one hand, I think it's very important to be self-aware, to believe what our body tells us and try to support it and, at the same time, to have periods in the day when we're not thinking about it, because we don't need to think about it 24-7 to effectively self-manage. And it's great to have periods in the day where we're, even if we have symptoms, living in a more positive space of being in an activity, being with a friend, reading an interesting book, watching a podcast, just looking at the sun outside from your easy chair and imagining the future that you want. So because of neuroplasticity, so we look at self-management. A lot of people dismiss it because they think it's just kind of not very powerful or maybe it's psychological. But one of the turning points for me was when I started understanding the biology behind self-management. It's just as real as any other type of biology. So, for example, the biology of thinking rests in neuroplasticity. That's a science that's almost 100 years old. It was developed. Some of the first publications were by Donald Hebb, who was a Canadian psychologist, back in the 1930s, back in the 1930s. So again, we're approaching that 100 year mark.

Eleanor Stein: 20:07

There's probably tens of thousands of studies documenting, with objective measures like functional MRI, that whatever we think about repeatedly over and over hardwires in the brain and we get better and better thinking about it and it gets to be our default. It gets easier. Similarly, and sometimes that contributes to symptoms, because what we're thinking about is fear and worry and pain and dizziness and nausea and fatigue and all of these things. So it's like very tricky because on the the one hand, all those symptoms are absolutely real and genuine and in research settings they're often measurable, right, so we know they exist. But at the same time, if I spend an undue amount of time thinking about the symptoms, what happens in my brain, unbeknownst to me, because neuroplasticity is below the level of consciousness, it's not something I can kind of change on purpose, like at the cellular level, we get better and better at worrying and we get better and better at detecting potential problems. Get better and better at detecting potential problems. And that's where, for example, with chemical sensitivity, a typical trajectory is that people become more and more sensitive to more and more things more easily, with more symptoms, and it lasts longer. That I believe. I do not have proof for that, so those studies have unfortunately not been done, but I believe that's an example of where neuroplasticity may come into play.

Eleanor Stein: 21:46

So there's a point at which it can be helpful to say I'm feeling like crap, there's nothing I can do about it right now, in this moment. So I'm going to actually shift the focus of my. I'm going to choose to shift the focus of my attention to something that's more like conducive or in sync with the life that I want to lead, the life where I feel well and more active, more social, more creative, more clear thinking, et cetera social, more creative, more clear thinking, etc. And if I can practice what that feels like, because once you've had long COVID for several years, it can be hard to remember. So the more you can kind of imagine what that feels like or remember what it feels like and practice that, you're actually now priming those neural pathways that will help your brain accomplish it. And you know, I say well, is that psychological or biomedical? Well, actually, the mind and the body are so intertwined that that question isn't actually really relevant. But what I can say is thinking changes our brain and our brain changes our thoughts.

Jackie Baxter: 23:09

It's a reciprocal pathway yeah, I mean this is amazing, isn't it? Because you know when, when you're unwell, it takes over every aspect of everything in your life, doesn't it affects your ability to work, to socialize, to eat, to drink, um, to do anything you know, to exercise, obviously. Um, you know all of these aspects of our. You know even the chores that we don't want to do in the first place I was just going to say doing laundry, exactly.

Jackie Baxter: 23:45

I find myself so excited when I could do chores again, which sounds ridiculous, but you know it was it was. You know you miss things that you didn't even want to do in the first place because it just takes over, as you say, every aspect of your life. And when that happens, you know it becomes this identity, doesn't it? You know, um, you know, and it's almost like that's a sort of an armor. You know you, you get your tribe, you know you meet other people who are going through the same thing and you feel that validation and there's something so powerful, I think, in that connection itself. But I think then, the difficulty is because it takes over every aspect of your life. It's very difficult to do what you were just describing, where you're saying you know, shift your focus to what you want, to something other than the pain that you're experiencing in that moment.

Jackie Baxter: 24:36

And I think you know some people find things like creativity very helpful, even if it's just doodling stick men, which is about my level of drawing um, you know, and things like that can be helpful because it gives you, you know it slightly shifts your focus, um, I guess, onto the can rather than the can't, but it also gets you out of your head a little bit, doesn't it, which I think can be really helpful. Um, but yeah, it's, it's such a difficult thing to do, I think you know. You know as much as it's very helpful. I don't know if you've got any other tips for helping to shift your focus how to do it?

Eleanor Stein: 25:08

Yeah, in my manual. So I wrote a manual back in. I self-published it in 2012. So it's been a while, but some things in it still seem quite valid and helpful. But some things in it still seem quite valid and helpful.

Eleanor Stein: 25:27

I took I kind of borrowed from a parenting book and this parenting expert, who's very wise, would ask the parents questions, things like is this imminently fatal morally? You know, whatever the child is doing morally reprehensible or, you know, dangerous, something like that. And if the answer is no, because she's trying to get parents to kind of back off a bit, right, to not be so reactive. And her first name's Barbara. Barbara Calarosa is the parenting expert. I really liked her a lot.

Eleanor Stein: 26:08

So I kind of took a similar approach with symptoms. I could ask myself in the moment okay, the symptom I'm getting right now, is it acutely dangerous? Like, do I need to go to eMERGE? And if the answer is yes, you should go to eMERGE, right. Obviously, that's listening to your body, that's good self-care. But if it's a symptom I've had a hundred times and I know from experience it waxes and wanes and right now it's in a bit of a flare and maybe I even know why, because I overdid some aspect you know of my life that day. Then it's, and so I know what it is and I know it's eventually going to ease off. Then it's not very helpful to keep thinking about it Because, again, that just keeps ringing the danger alarm in the brain.

Eleanor Stein: 26:58

So that would be, if I can kind of answer that question is it imminently dangerous? And the answer is no. Is it familiar? And the answer is yes, because if it's a new symptom, of course you should also get it checked out, right, because you don't yet know if it's dangerous or not. So if it's not dangerous and familiar, that's when I think it's quite safe and probably helpful to make the decision to shift one's focus to something positive and the word that often gets used is mood elevating, so something that makes you feel good. And the reason for that is because the brain can't generate a positive mood and symptoms at the same time.

Eleanor Stein: 27:50

A positive mood and symptoms at the same time, right when the body thinks you're in danger and it starts firing up pain or dizziness or brain fog or something to get your attention. You don't feel good. All of your focus is on the worry. Oh my gosh, what if this happens. What if this happens? Totally understandable, because these are sometimes incredibly severe and disabling symptoms. It's not that we're in any way doubting the genuineness of the symptoms, that the trick is, or the the discussion is what's going to help me in this moment? Right? So self-management is trying to find the behavior, the action in this moment that's going to be the most beneficial.

Eleanor Stein: 28:35

And if it's a symptom that you're very familiar with, you know what comes and goes. Maybe you did something you know maybe wasn't such a great idea. So now you're a little bit mad at yourself as well. Like why did I do that? But you know what it happens.

Eleanor Stein: 28:49

We're all human. Why did I eat that thing? Why did I walk for 10 minutes longer than I normally do? Why did I stay up watching Netflix and missed my you know good bedtime? Like, we all do these things. It's part of being human. Do these things, it's part of being human. So if it's very familiar and I shift the focus of my attention to something that makes me feel good call a friend, watch something funny, paint doodle, listen to music, sit outside like there's so many, you know literally unlimited choices, like there's so many, you know literally unlimited choices it gives my brain the message that, even though these symptoms are going on, I'm not in danger because I'm sitting outside in the sun. If I was in danger, I would be worrying, problem solving or going to hospital. So there's a dissonance. The brain is like I'm firing up this severe symptom and you're lying there enjoying the sunshine.

Jackie Baxter: 29:49

Something's not matching right now.

Eleanor Stein: 29:53

Yeah, and that's how we change the brain. The brain is going down this default pathway that you've gone down, you know, 100 or 1000 or 10,000 times before. And we're challenging that and saying, no, I know that although this is very unpleasant, it's unlikely to kill me and I really enjoy sitting out in the sun and that's what I'm choosing to do. And the brain notices that. We don't have to actually think it through, we don't have to do any cognitive strategies. The brain notices that and if we break that pattern enough times, the brain goes huh, you know what? I guess that situation or symptom wasn't so bad After all.

Eleanor Stein: 30:35

I can dial down the intensity with which I'm warning. You know the person about it. It's, it must not be that bad and that's how the symptoms can actually shift. And again for clarity, because you know I get myself into lots of trouble I'm not saying the symptoms aren't real. I'm not saying the biology isn't there. If you measured that symptom in that moment, it would be measurable. It's real, it's there, but we can use the mind as a not but. And we can use the mind as a not but and we can use the mind as a tool to turn down the volume on some symptoms by showing the brain that we're not in danger yeah, yeah, and allowing ourselves to feel safe in our own bodies again, um, yeah, which is something that seems sort of unthinkable when you're unwell.

Jackie Baxter: 31:29

Um, yeah, so I mean going, going back just a moment to where we were talking about listening to our bodies, and you know how important it is to listen, but also, you know, to, I suppose, not become hyper focused or hyper aware. Um, what are your thoughts on things like wearables? You know a lot of people are using things like sports watches and, um, heart rate monitors and and all of these things and you know, I, I think I mean, some people seem to find them really helpful. Um, as someone who gets very, very obsessed with things very, very easily, I stayed way away from them because I thought this is going to be a disaster for me and actually really helped me to tune into my own body a lot better, I think. But I'm sort of wondering what your thoughts are on these and their possible usefulness.

Eleanor Stein: 32:21

You know I totally agree with what you just said that everybody is different. So for me, many people know I wear an aura ring Now for the first. I've had it for just over two years. For the first, like almost up until the last few months, I would look at it every morning and I thought what it said was really important and instructive. But it's not that smart. It's just a machine and the algorithms sometimes tell me stupid things, right, that I know are not true, or it tells me to do something that I know would be a mistake. So now I'm using it a little bit differently. I'm just really using it to log. I don't look at it. You know I download it from time to time and I don't really pay that much attention to it. But I know I have the data there if I ever needed to go back and look for big trends. For example, I have a talk that I give on wearable trackers. I believe it's actually on my free video page where I go through, kind of what you're looking. You know what measures to look for, what are the most useful. So what I would say is the number one usefulness of a wearable.

Eleanor Stein: 33:37

Maybe two uses of wearable trackers. One is to help people pace their activities in real time. So if you have a wearable tracker where it shows you your heart rate in real time as you're going about your day, I did. You know, way back in the day, before there were wearable trackers, I had a polar heart rate monitor chest strap and I wore that thing for probably two or three years every time I went for a walk or did garden work or something like that, so that I could pace and keep my heart rate below 120. That was kind of my number. Everyone has their own number. That was incredibly helpful because I had no idea that sometimes the tiniest thing would spike that heart rate really high and then I couldn't figure out why I was so crashed. So I think that's a very good use, not that you become a slave to this heart rate and if it goes to 125, it's a disaster. I mean, we're biological beings and sometimes we overshoot, sometimes we undershoot. As long as you're in the ballpark you're probably okay, but that's really useful.

Eleanor Stein: 34:57

The second use might be for sleep. So a lot of the trackers give you sleep data. Now one of my sleep mentors he's actually going to be giving a webinar for me in February and he's done a lot of overnight sleep studies of people with ME and probably now long COVID. And he said to me recently if you're asleep, I have pretty messed up sleep. So he said, ellie, if your sleep is as messed up as yours, the data you're getting from your tracker doesn't mean anything. So I thought, oh, that's really good information. So tracker data for sleep how long you sleep probably pretty accurate. Um, heart rate variability overnight is quite useful because it tells you how well you're recovering from the previous day.

Eleanor Stein: 36:15

But things like how much deep sleep, light sleep, rem sleep you're getting, he said, for anyone with disrupted sleep, can be literally totally wrong. And I know that because I recently had an overnight sleep study and my tracker like wasn't even on the same planet as my overnight sleep study results. So that's where I would say just basic things like how many hours of sleep are you getting? It's pretty good at that and that can be helpful. Again, trends, not that every night matters, oh, I got five minutes less or five minutes more, but say you try a new remedy or medication or meditation before bed, some kind of new strategy looking at big picture. Is that improving, you know, or getting in the way of my sleep. I think that's a really helpful use.

Jackie Baxter: 37:07

Yeah, I mean that's a really good point, because if you are making the effort and possibly putting in the energy to try something, whether it's a medication which may have side effects, or a new strategy which takes, you know, thought and effort to do, or you know whatever that is, or breathing exercises that you have to put into your day, um, you want, you want to know that they're working. Um, and, yeah, you know, I mean, for me the proof was in the pudding. I felt better. But you know, some people like data, some people like being able to see that, and they can do that without getting obsessed with it, whereas I think I wouldn't. So, yeah, yeah, I see your point about the kind of the bigger picture thing.

Eleanor Stein: 37:51

Potentially, but I just want to validate. You know people like what you're, how you're describing yourself. So I've had many people email me and say this tracker thing isn't working. I'm obsessed with it, I'm thinking about it all the time and they're getting very like into minute details of you know three heartbeats up or down. So if you're that kind of person, then good self-management is to not get a tracker right. That's all part of knowing yourself.

Jackie Baxter: 38:20

Yeah, and you know, and that's such a good point. I mean, you know, this journey teaches us so much about ourselves, and some of it is things that we maybe don't like that much. I certainly found out things about myself that I didn't like, but you know a lot of things that were very, very useful because they helped me to understand myself, my brain, my own body, my patterns that I tend to fall into without really noticing. So, yeah, I think that's a really good point and, you know, it's not that there's anything wrong with any of these traits. It's's the more you know, the more you can then say, oh, okay, well, when that happens, I tend to do that. So now I can not do that. Um, or you know whatever. Um, yeah, that's so interesting. Um, so you've mentioned a few different things here. You know, we've talked about diet. We've talked a bit about sleep.

Eleanor Stein: 39:12

Um, resting, you know, is a self-management tool isn't it, that's that's probably one of the most important.

Jackie Baxter: 39:20

Um, I mean again, without going down into like minute detail because we probably just don't have the time um, but can you give a kind of overview of of some of the sort of self-management strategies and and how you might adapt them for different people? Because, as we know, everyone's on a different sort of level. You know, we have the sort of people who are who are sort of really not able to move much at all, people who are more functional. Um, and how how you might be able to kind of adjust different strategies to different people's level of well, functionality I functionality, I suppose would be the word Sure, if that's not too big a topic.

Eleanor Stein: 39:59

Yeah, no, if we just talk about activity level, believe it or not, even though that's really at the core of the symptoms, right, fatigue and post-exertional malaise I don't give people a lot of instruction about how much to move or not move, because I think people do it naturally. So what I've observed is someone who's severely ill intuitively knows they really have to limit, you know, how much time they're moving or even how much time they're upright, right, I don't have to really teach them that. It's quite obvious. When you crash or you have a, you know, a pot's flare or something like that because you did too much, People figure that out pretty quickly. And similarly, as people like in the old days, people who were, you know, advocating cognitive behavior therapy for ME and I'm sure they're out there advocating it for long, COVID now, I find it unnecessary because in my observation and I've been, you know, in this practice before I retired for like 25 years seeing people with complex chronic diseases day in and day out, when people start feeling better, they naturally start doing more. You don't have to advise them or push them or get them to, you know, gradually increase their activity. It just happens naturally. So I actually don't give like, other than the heart rate monitoring that I mentioned before. Sometimes it's helpful to just figure out what your maximum heart rate is at a given point in time. That's going to lead to a crash. But in terms of activity levels, I find people are quite wise and don't need a lot of instruction, and everybody is different. So if I on the outside tell you, Jackie, you should be active or upright for this many minutes or hours a day, I'm going to get it wrong 100% of the time because I'm not in your body, right.

Eleanor Stein: 42:09

So I would much rather teach you some of the call them early warning signs. So I would say, kind of go at it, but be aware of what your early warning signs are, and they're different for each person. So the early warning signs are the first symptoms you start noticing that over time, in retrospect, you realize are leading to a crash. Of course, at first you don't know that, you just go through it, right. But after you've crashed many times you go oh, you know, before the crash I usually have to pee. You know they can be very unique. Or I start sweating, or my eyes get itchy or tired, or my head gets heavy or fatigued. Right, I start not being able to think or talk clearly, or I start getting more pain or dizziness. It's so individual. So one of my recommendations to people is observe yourself carefully enough. Write down the list of your early warning signs, put it on your fridge so that when you start experiencing them you go oh right, this is.

Eleanor Stein: 43:29

If I keep going right in this moment, I'm probably going to end up in a crash. That's going, by definition, to take more than 24 hours to recover, and if I don't want that to happen, I should stop now and rest and resting. You brought that up. That's a great question. I'm pretty old school with rest, so rest is horizontal with eyes and ears closed. So some people of course, if you're bed bound, you don't want to have your eyes and ears closed all the time. You need some kind of stimulation. But if you're doing, you know, say you're mostly upright, but then maybe maybe one or two or three hours a day, preemptively before a bigger activity or after the activity, to help you recover, you need to rest. In my experience, that rest is most effective if it's true rest of all of your senses and you're not listening to music or podcasts while you're lying there.

Jackie Baxter: 44:36

Yeah, and this was something that I didn't understand to start with, I thought, right, okay, well, you know, I'm lying down, I'm resting. And then I realized that, no, my body may have been resting, but my mind certainly wasn't. You know, it was almost like the more my body rested, the less my mind rested, because it was running in circles. You, I, I have the, the monkey with the symbols in my head like all the time, um, and it was trying to find ways to, if not turn it off, certainly turn it down, to allow my brain to rest as well as my body. Because, you know, it was that idea of physical, cognitive, emotional, um, you know, reducing that sort of overload in all of those areas in order to allow yourself to truly rest. And it wasn't something I found easy, um, or enjoyable I've started.

Eleanor Stein: 45:27

I I have these little mantras sometimes when I am resting or even before bed, and my one this week is being so. I talk in my manual about the difference between being and doing, and many of us not just people with ME or long COVID, but in the world doing gets a lot more kudos and positive regard than being right. Being is like you're just sitting around wasting time taking up space. So for me, I'm actively working on a daily basis to appreciate and almost yearn for being so. Now, if I can't sleep, for example, I may lie there and just say what an amazing opportunity. I'm lying in this very comfortable place. You know, I have everything I need and I have this opportunity to be without any expectation. Maybe it's the middle of the night, for example. I don't have to do anything check my emails, prepare a talk, nothing like that. And I did that last night and I fell back asleep it's almost giving yourself permission to not do anything.

Jackie Baxter: 46:50

And again, you know, coming back to what we were talking about earlier, society doesn't give us permission to not do anything. And again, you know, coming back to what we were talking about earlier, society doesn't give us permission to not do anything. Um, you know, society tells us that we should always be doing, we should always be producing, we should always be, um, you know, yeah, doing doing things. Yeah, you know being productive and yeah, I think it's, I mean, even since recovery, for me it's remembering that actually, yeah, doing is important, you know, but it's not more important than not doing again, another myth, right?

Eleanor Stein: 47:35

I'm big on these myths right now. So things that were told from the day we're born we might not, maybe our parents didn't directly tell us, but it's just all around us, it's just assumed to be true and we never. That's called socialization, right? Things that we just take in and we don't even realize they're an opinion and they might be wrong, realize they're an opinion and they might be wrong.

Eleanor Stein: 47:56

And I have, you know, over the years I've had a couple patients in my medical practice who were, say, advanced meditation practitioners, you know, like religious people, and I just go, oh, you just sit there for five hours meditating, or you go for a silent retreat for the whole week or month or a year. You know, these people are that's their life vocation, and it's really taken me a long time to see any value in that. Hope they're not listening, but I do see it that doing and being are equally valuable and it's the balance between the two that's probably. I'm all into this Goldilocks zone, you know, not too hot, not too cold, just right. And I think it's that between being and doing there's some balance point there where we of course want to learn and grow and produce things and we develop the skill to be. That's my learning edge right now, the thing that I'm really actively working to value more, so that I'll be motivated to practice it more.

Jackie Baxter: 49:15

Yeah, I think you're right and I think the word practice is a really good one, because you know I've been coming back to the wider topic of self-management you have to practice it. You know, it's like anything in life. You don't pick up a clarinet and, hey, I can play this straight away. You know, as a musician, I can promise you that you cannot pick up a musical instrument and instantly be good at it. Some people will be playing for years and years and still not be good at it. But anyway, you have to practice it.

Jackie Baxter: 49:44

It's that consistency, it's it's doing it over and over and you get better at it over time. And you know, I say this to my breathing group members, um, clients, all the time you have to practice it. You don't just start learning a new breathing exercise and get good at it straight away. You don't get long COVID and suddenly get good at pacing straight away. I'm not sure anyone's good at pacing, um, you know this. I think it's the same with all of these things. You know you have to, you have to practice it, but also you have to understand your own body and how your own body responds to different things, don't you? Um? So it's this process of, yeah, practicing exploration, curiosity, um, you know, I think curiosity is so important as well, isn't it? You know, to be interested in these things and open minded, and yeah, you know the the idea of practicing doing nothing sounds really silly, doesn't it?

Jackie Baxter: 50:43

it's like, surely you know, doing doing nothing, that's easy, but no, doing nothing is one of the hardest things and also, what I think, one of the most valuable, I think.

Eleanor Stein: 50:56

I agree. At least that's where I'm at. You know we're all going through different learning at different times in the illness, right, but it definitely. If you would have told me 35 years ago, before I got sick, I would be really actually enjoying being. I would have told you you were nuts yeah, it is fun, isn't it?

Jackie Baxter: 51:24

um, so, you know, when we've we've talked a bit about, we've talked about all sorts of things, haven't we? And we've dived a bit into self-management and some of these tools and techniques, and I think there is a booklet that I'm going to put a link to in the show notes that has more information about all of these things, about all of these things um. So you know, maybe have you have you got some top tips of maybe things for people to.

Eleanor Stein: 51:54

I do. I've even written them down so I won't forget them.

Eleanor Stein: 51:57

You preempted me this is a new one, so you know I'm constantly learning right and I'm not if the top tips in my manual have evolved and I have different top tips now. So the thing that I'm really excited about and learning at the moment is called quantum biology and just very, very briefly, it's that quantum physics, the principles of quantum physics, actually are what make our bodies work. So we thought that was impossible. I won't go into the long you know 100 years of debate on that. It was thought impossible because quantum physics, you know you have to have single molecules in a particle accelerator at absolute zero and all of this stuff for it to work. Turns out the body has ways of kind of severing off and making very quiet and cohesive little aspects of function so that quantum processes work.

Eleanor Stein: 53:09

So the most simple and most obvious way in which we interact with our environment on a quantum basis is when we're exposed to sunlight. So if I had to give one tip and we don't have time to go into all the science behind it, so you'll just have to trust me, there's a lot and it's growing Is to get outside into the sun at any time of day, because you're going to get different light frequencies at different times of day. So the more you can get out, the more times during the day you can get out, even if it's for a few minutes, has massive biological benefits. When we stay inside, unfortunately, our modern glass blocks several very important wavelengths of light and we're being starved and there are people out there who are believing that this is a significant contributor to the epidemic of chronic disease, even things like diabetes and dementia and heart disease, not to mention fatigue, because that light actually powers up our mitochondria. One tip now and I'm yelling it from the rooftops is get out in the actual sunlight without sunglasses and with as few clothes on as is practical for your environment. Some things you, some rays go through clothes, some don't. You know it's all a bit more complicated, but basically, the more you get outside and expose your body and your eyes to sunlight, the better. That's my big tip.

Eleanor Stein: 54:50

Second tip live your life as if you were a cave person in terms of syncing it to the sun. So our ancestors didn't have light bulbs and didn't have devices. They woke up light bulbs and didn't have devices. They woke up at dawn, that's 40 minutes before sunrise, and they went to bed. How do we actually know this Probably supposition, but it's thought they went to bed within an hour or two of sunset and the only light they had around them was firelight. If that, we have shifted our day much later. I used to not get up till 11, 12, right. My sleep was totally messed up when I became ill, and then, of course, I would be up super late. One of the biggest successes of this trip I've been traveling for five months is my alarm clock is now set at 6.15am. This morning I was up before the sun and I was out on the trail looking at the sunrise. So that's a massive, massive shift in my own self-management. Shift in my own self-management.

Eleanor Stein: 56:06

Number three eat real food. So I think it's less important are you vegetarian or keto or paleo or carnivore or whatever? I think we're all different and so there's no single prescription for diet, but I think what's important is eat real food. That means things with one ingredient and no chemicals that have not been processed. So nothing has been taken out and nothing has been put in.

Eleanor Stein: 56:36

My fourth and final one we've kind of touched on actually already is mindset. So the placebo right, the power of belief, is really, really strong. There's again hundreds thousands of studies showing that it's a real thing, that impacts our biology, and the placebo effect is just one example of that. That. If you think some kind of change in your lifestyle is going to help you, the chances that it will help you are higher. So I would say practice if you're not there, and it seems like a bit of a reach practice, the mindset that improvement is possible.

Eleanor Stein: 57:23

I know people with long COVID are newer to this than someone like me who's been, you know, got ill 35 years ago. So it took me 27 years of believing that it was hopeless before I got better. And I'm not 100%, but I'm significantly better. I can do most of the things I want to do now significantly better. I can do most of the things I want to do now.

Eleanor Stein: 57:56

I wish somehow I had found the flexibility or been exposed to some of the science that I now understand about mindset 30 years ago, 35 years ago, because it would have saved me a lot. I mean, who knows if it would have shifted me or not, but it wouldn't hurt. Let's just say I mean, who knows if it would have shifted me or not, but it wouldn't hurt. Let's just say so if you have the belief that recovery is possible, which it is right. Many of us are here to say we have gotten substantially better. So it is definitely possible. It will prime your brain, which will prime your body, to fire up all of the molecules that are needed for recovery.

Jackie Baxter: 58:32

So there's no guarantee of recovery, but it won't hurt yeah, and it comes back again to the, the can, doesn't it? Um? What can we do to put ourselves in the best possible position for the body to heal itself or for other things to help? Um, you know, because it's, it's all, yeah, all different, different stuff that can help people. Yeah, thank you so much. Um, this has been amazing. We've, you know, traveled through much useful stuff, and I will make sure that those links go into the show notes as well.

Eleanor Stein: 59:13

So, thank you so much for giving up your time because that's what I've been doing for the last 35 years. But you know, I've been told by people who have long COVID that they can relate to it and that you may find it helpful. I've got a lot of free material on my website. Thanks so much, jackie, for the opportunity.