198 - Lighting Candles, Not Waiting for Light Bulbs: Practical Belief-Building Techniques

We go from theory to practice on beliefs and recovery, building a daily framework that protects mindset, reduces flare spirals, and turns small wins into lasting change. Practical tools include proof journaling, identity shifts, nervous system regulation, and curating what you let in.

• building a symptom and activity proof journal
• reframing setbacks as feedback not failure
• identity-based habits to support healing
• managing physiology first with breath
• countering nocebo and fear narratives
• curating social media and inputs
• progress not perfection through tiny choices
• making recovery actions feel good to repeat
• faster bouncebacks and long-term resilience

Part 1 of this discussion is HERE

Links: 

CFS Recovery Stories: https://cfsunravelled.com/me-cfs-recovery-stories-patient-me-cfs-stories-with-a-difference/      

ANS REWIRE Free Lessons:  https://ansrewire.com/info-request/

For more information about Long Covid Breathing courses & workshops, please check out LongCovidBreathing.com

(music credit - Brock Hewitt, Rule of Life)

Chapters

• 0:00 Recap And Shift To The How
• 3:04 Building A Proof Journal
• 6:15 Identity And Elite Habits
• 10:45 Managing Physiology During Flares
• 15:25 Nocebo, Narratives, And Safeguarding Beliefs
• 20:15 Curating Inputs And Social Media Hygiene
• 25:57 Expecting Setbacks And Reframing Data
• 30:07 Breathing First, Then Evidence
• 33:17 Faster Bouncebacks And Deeper Dips
• 38:24 Optimism, Habits, And Daily Practice
• 42:44 Progress Not Perfection: Tiny Choices
• 47:24 Make Recovery Actions Feel Good
• 51:34 Compliance, Mindset, And Lasting Resilience
• 55:54 Beyond Recovery: Becoming More Resilient

Transcript

Jackie Baxter: 0:55

Hello and welcome to this episode of the Long COVID podcast. I am here today with the wonderful Dan Neuffer for the second half of our discussion on beliefs. So if you haven't yet heard last week's episode, which is the first half of this conversation, I highly recommend that you do because that is where we get into a bit of the why. Why are beliefs important? What are beliefs? What's the actual science behind them and how are they relevant to recovery? So we cover all of that in detail in the first half. Today we are going to get a bit more into the how. How do I make this work for me? How do I build my own beliefs? How do I protect my own beliefs? And what can I do if I'm really, really struggling? So that's all coming up today.

Jackie Baxter: 1:55

Dan welcome back. Let's get stuck back in. Um, so you said that there are ways that we can make this easier or that we can help ourselves to kind of do this. Can you run through a few of these?

Dan Neuffer: 2:09

Well, the first thing we do when we get into the ANS rewire program is we actually do a detailed journal of all our symptoms and our activities. Day one, first hour straight away. And then I ask people to redo this without looking at the last one every month. Right? And you don't need that journal that that questionnaire, you don't need to be the ANS rewire program, just do it yourself. But it's a journal of what can you do, what what activities can you do, what are your symptoms, rate them out of 10. Yeah. And and it's interesting things that come from that because there's certain patterns about which symptoms disappear first. Also, um they can be it can give us insights into how we're recovering, because sometimes we find that the symptoms stay the same, and I'm doing an inverted commas thing here with my fingers. We think they're the same, but they're not really the same, and we can see the evidence for that in other parts of the questionnaire, like our activity, right? Um, because uh the reason the symptoms sort of stay the same is because our activity has gone up. But if we kept our activity the same, we would have found that the symptoms have reduced. Um, so keeping like some kind of a proof journal where you write these things down, and also you note down little things, like you know, oh, I had a little bit of a better sleep, or I didn't overreact to something so much, or when I was out doing the shopping, it didn't feel that bad. Um, you know, I managed to do the groceries and I was a bit tired when I got home, but I didn't feel like I was gonna like have some kind of a meltdown in the supermarket, right? So all these little positive things, look for them and then write them down, okay? Um, because you see these records become your anchor. Um, because when things go wrong and we have a flare-up or setback, we get this like amnesia, selective amnesia, and like we forget all the progress we made. And when you write it down and you look at it and you go, you know, that was real. I you know, but in the moment when things are going bad, we look back at it, we we we think, oh, I was just imagining it, right? But you write it down and you're objective about it, and you can go, hang on a sec, that's that was real, you know. So I think that that is a that's a first step. The other thing is it's a little bit about identity. You know, because we we're talking about behavior and there are layers of psychological um approaches that most elite uh athletes will use. If you want to be uh elite at anything, then you have to have a framework, an action framework. You can't just expect to be oh I'm a naturally good at just being the best at everything, I can do it amazing. Like this doesn't tend to happen, right? If you look at elite sports people, they don't tend to be the most talented, they tend to be the people who've done the work, who've used all the tools. It's not just about the talent. Um and I think there's a saying that the you know, if you look at the top 300 tennis players, the way they play looks pretty much identical. You know, looks pretty much identical. It's not that big a difference. There might be two or three that stand out a little bit, but pretty much, you know, um Federer still has to rally against number 200, you know. Uh and so it's all those little things, and and the way you can shortcut some of all of those psychological um techniques is with identity. So instead of going, oh, I should do this and blah blah blah and all this work, you can just go, I'm becoming someone who supports my body's healing. I'm becoming somebody who supports my body's healing. And you know, that's like a framing of your identity. And and this can really help you uh develop that belief and that momentum. And I think it's also really important as part of that. Again, I'm talking about elite athletes, but one of the first things they do is is they they manage their physio physiological state. And so what I'm talking about here is kind of for us actually more than just you know ways to um build those layers of proof, but it starts to go into recovery technique, right? Because we happen to have an illness that is a neurological dysfunction. So therefore, when you manage your uh your your physiological state, you're actually doing a recovery action, not just building your uh evidence. So when symptoms flare up, because your beliefs tend to shut down when that happens, right? You can learn techniques like breathing to calm yourself down, and then reconnect with that belief. Yeah. And you know, over time there's this repetition, repetition and evidence, and it create way creates this this this rewired confidence. Um so it's not that you have to wait until you feel convinced, you have to build conviction to getting lots of small proof.

Jackie Baxter: 7:40

So it's not waiting for someone to switch on the light, it's consistently lighting the light yourself. That analogy didn't quite work, but yeah.

Dan Neuffer: 7:49

Yeah, well, think of think of like uh how about lighting lots of little candles and it gets brighter over time, you know. Um we we we always look for that big one thing that bang, you know, but with the body is so complex, and when you have dysfunction, and and the dysfunction is very complicated in this group of illness, right? Central dysfunction, secondary dysfunctions, dysfunctions interacting with other dysfunctions. Um, like when I first went to do like a diagram of what's going on, I ended up literally with something that just looked like a complete scribble, because every node was attached to every other node. There was no pattern, it was like impossible. And this is why doctors just go and medical research in the past have gone, this is just a mess, right? Because if you try and follow the the links, everything's connected and everything's a mess. Um yeah, so I I think um I think we have to we have to just build slowly from lots of little nodes, lots of little bits of evidence, and you know, soon it'll get brighter.

Jackie Baxter: 9:02

Yeah, yeah, I love that. And I love the sort of light visualization that you've just kind of drawn in my mind as well. Um, you know, little little connections, little building, um, building of light. Um I like that.

Dan Neuffer: 9:15

Like Christmas.

Jackie Baxter: 9:16

Well, exactly, and we're almost there, right?

Dan Neuffer: 9:19

We're nearly Christmas. Are we going towards Christmas? Christmas lights, you know, all of that. So that's when you see the Christmas lights, think about your beliefs. Think about building action towards your beliefs. Okay.

Jackie Baxter: 9:31

I love that. That's amazing. Um so you know, we've just talked a little bit about how beliefs, you know, they can be fragile. You know, I felt this myself, you know, I might be starting to see a little bit of improvement. Okay, great. Yep, my beliefs are all doing well, you know, and then, you know, something happens, you hit a bit of a speed bump, and you know, you're not feeling so good. Maybe you're feeling quite awful. Um, and you know, all of that belief that you thought you had suddenly, oh, well, I must have been wrong. You know, I must have been wrong. You know, I didn't really, you know, as you said, you know, it we it's it's you don't really believe that maybe you did see that improvement. Um or even something external happens. And I remember this happened to me. I was doing quite well, and there were other people that I knew who were kind of, you know, doing, you know, they were maybe further along than me, but they were still on their recovery journey. And then I remember seeing that person hit a huge speed bump, total crash. Um, and I thought, oh, but like this person was such a big part of my own beliefs, you know, that they were recovering and they were further along than me. Therefore, you know, I was gonna follow that trajectory, I was gonna, you know, be able to get to where they are, and and then everything went wrong for them, and you know, they they bounced back and everything was okay. But you know, in that moment, it was like, you know, I felt it in my body.

Dan Neuffer: 10:51

Their trajectory didn't look so good anymore, right?

Jackie Baxter: 10:56

Exactly. You know, they they crashed hard. And therefore, I I also did, um, because you know, that that belief was kind of shattered um because what I saw in them, and then that sort of, I suppose, became my new belief that, oh well, if if that happened to them, then that will also happen to me. So, how do we kind of protect these beliefs, you know, when when we feel like we're starting to build them? How can we protect them from ourselves, but also I suppose from those kind of outsider influences as well?

Dan Neuffer: 11:30

So this is a great question. I'm gonna answer that, but I just want to point something out. Like what you're talking there about, what you're talking about there is it really sounds a bit like the nocebo effect.

Speaker 3: 11:41

Right?

Dan Neuffer: 11:42

So we have the placebo and the nocebo. And then, you know, I don't even like saying those words because it sounds not so much the woo-woo about it, but it kind of feeds that narrative of oh, the illness is all in your head, like it's a psychological thing, and that's gee, you heard someone else got sick, now you're getting sick, uh, you know, it's because it's all in your head, right? Um, and I think that's why when we hear these connections, I think many of us just feel deeply uncomfortable because it it kind of you know underpins this kind of narrative. But you you have to understand that when you have a neurological dysfunction that deals with um you know the the sympathetic, the parasympathetic, the enteric nervous system, all of those. And those things are stimulated in every person by a range of things. And if it's dysfunctional and hyperreactive in both in all directions, then the nocebo effect isn't just some weird mystical thing, it becomes a very real direct thing. I mean it's like it's it's a bit like a diabetic, right? If you had a diabetic, and you go, oh yeah, and if I stress them out, their blood sugar is gonna go mental. Then I need to eat a Mars bar for their blood sugar to go bad, right? I can have them have no colors. How about I give them a strong coffee without any sugar? Right? So not like a like a milk coffee, just a water coffee, right? You watch what happens to their blood sugar, yeah. So even even in other illness, yeah, this this these the stimulations of a nervous system can have a massive impact on the this on dysfunctions in the body. So I just want to to start by by saying that, right? We obviously talked already about your body of proof that you can return to, like, you know, the the recovery stories on the websites, uh your your journals, all of these kind of things. But I think we need to make a choice again. And and you know, this is the most powerful thing we have because when we feel sick, sometimes we feel like we can't even do anything, right? We can always do something, but sometimes it really feels like you can't, right? So, yeah, what what we can do we we also have to really make the choice to really dedicate ourselves to protecting our mindset and to safeguard our beliefs, yeah, like like a garden, you know. You protect it from the birds if you're growing berries, protect it from moths, worms. In Australia, like just about everything will eat everything, right? You're just likely to end up with a stick, you know. Um, but you have to safeguard your beliefs. So you have to be, you have to make choices to stay away from negative people, to stay away from negative places, to stay away from negative narratives, because these will drain your hope, yeah? Like pulling the plug in the bathtub, it's just gonna drain your hope, and it's just gonna reinforce all of that fear. And and I I I also have to say, be careful about inadverted commas science-based fear narratives. There's a lot of uh pseudoscience out there, right? And the pseudoscience comes from channels where you would expect better. Yes? You know, it can come from places where you think you should be able to rely on the information. And just because you can look at an angle or a story of something that's going on, it it it doesn't give you the complete picture. Yeah. So we need to be careful, uh you know, does this mean that someone in this situation or with this dysfunction or in even in this narrative that that means they can't recover? I mean I've come across many people who have uh comorbidities, who have other illnesses that are in parallel to this AS dysfunctional illness. And indeed it is much more challenging for them to recover. And I won't go into all the details here, but uh there there's reasons for it. You could even make a really good scientific argument why those people could not recover. Like pretty solid. But where's the evidence that it actually means that they really can't recover? Like just because you have a lack of evidence that they can doesn't mean that that is the case. Yes? And I've of course got the privilege of working in this field for a long time. So you know I've got a lot of evidence that I've come across over the years from a lot of people, and so that's helped me to recalibrate my beliefs when I've gone. Well, maybe a person with this disorder might not be able to recover because and I could give you a spiel for half an hour why they can't recover, but then I have seen people who have, so therefore, that's not scientifically valid. Yes, my message is don't be quick to adopt inadverted, comma, science-based fear narratives, yeah. Um, when you can't be certain that they're really going to apply. And so it's about really like curating your environment. Okay, where am I gonna go? What am I gonna do? Do I go to catch up with the person who's gonna look at me and go, oh, what's wrong with your long cover here? You can't get rid of that every time you see them. Or are you gonna speak with the person says who's very positive, saying, Hey, you can do it, you look better, and you know, maybe not too positive because I can be a bit I can be a bit harsh to a counter-checking. Um, but yeah, it's about just making choosing the right environment and just protecting your inputs to your mindset.

Jackie Baxter: 18:03

I I talk about this as well with with people I'm working with, you know, it's it's putting the right things in, and you know, that's the food you put in, it's the hydration, it's the way you breathe. Um, you know, they're all really important, but it's also what you're consuming in terms of social media. Um, you know, if if you're seeing, you know, a million support groups, um, you know, and support groups are very useful for some people and people need that space. But if that's all you're seeing, then you're seeing an awful lot of negative and you're seeing it constantly every time you log on to Facebook, which is probably quite often because, you know, you're you're probably bored. Um, so it's it's you know, it's it's consuming the right things, you know, unfollowing things or deleting apps, um, or you know, even following the right channels um of things, you know, what podcasts you're listening to, what news stories are you listening to, uh, because it all has that impact, doesn't it? And you know, we we need to be really careful about you know the the things we plant in our garden. Um I guess to continue your your garden metaphor.

Dan Neuffer: 19:09

Look, and many people don't realize how social media works. This is a high-tech, high-tech industry. Uh, I don't know if yeah, maybe you've noticed this, uh, Jackie, that in the last 10 years in particular, things have become very bipolar. Like if you look at politics, there's one side of politics and then there's the other side. But in the past, you know, both sides wanted to do the best for the country. I mean, they were both still from the same country. But now we look at it like the enemy, you know, whichever side you're on, right? And it's like that with everything, with any sort of sensitive debate, any topic, you know, from diet to you know, things I can't even speak of, right? And the reason this happens is because the media will give you that which you connect with, one side of the argument, and that side of the argument usually is presented as a they they show the opposite side at the extreme view, and in such a way that it it incenses you, it angers you, it it makes you go crazy angry, and of course, that's gonna make you stay on and watch more, and of course, they'll give you more of that. Now, of course, if you happen to have by accident or chance or background fall on the other side of the argument, they'll give you everything that supports that side of the argument. So it doesn't matter which side you're on, but you're never gonna find anything that gives you something in the middle, because in the middle is boring. No one wants to watch the middle, yeah. And social media is about engagement, yeah. So be be mindful. You might you you might have a billion, you know, points of evidence for one side of an argument, but they're they're all they're all one-sided, yeah. That's how the uh how it works, yeah.

Jackie Baxter: 21:05

Yeah, and I suppose it's to start to question that, you know, is everything I see actually true? And you know, whatever you're looking at, it's probably not entirely true.

Dan Neuffer: 21:16

Um whatever you're looking at. Look at look look at the opposite. Try and really go with the opposite. Try and whatever your belief is, look at the opposite and build on that. And and suddenly you'll find that the opposite's not true either. That both sides are not true.

Jackie Baxter: 21:31

Yeah, yeah. And the actual truth is probably somewhere down the middle.

Dan Neuffer: 21:35

It's probably somewhere in the middle, yeah.

Jackie Baxter: 21:38

Yeah, and it's I suppose it's this as well, you know, we talk about the importance of connection for our nervous system, for society, for everyone's well-being. And, you know, this kind of right and wrong, left and right, either or narrative creates more and more division. Whereas actually what we want is more connection, whether it's in ourselves in terms of recovery or the world, you know. Um, you know, you could you could sort of solve so many things, you know. I mean, it's it's not simple. Um, but you know, this this idea of you know bringing people together rather than pushing them apart. Um, so yeah, I think as you say, social media has an awful lot to answer for.

Dan Neuffer: 22:22

Yeah, yeah. We have we we all have to make strong choices. And you know, we all fall into it. Like absolutely better than everyone else. It's you get sucked into it and then suddenly you realize, oh yeah, absolutely.

Jackie Baxter: 22:35

Yeah, and it's it's challenging, isn't it? Because I mean, you know, you brought up a great point there. Nobody's perfect. Um, you and I will fall into the same trap, um, you know, in the same way that you know, I will miss a day on my breath practice um because you know, life happened, or you know, I'll I'll have a day where I, you know, did get sucked into Facebook or whatever. And it's that kind of um ability to notice when you're doing that um and say, oh, okay, we're doing this again. Okay, well, I'm gonna choose to stop doing that now I've noticed it, rather than getting sucked in and now it's started. Well, I can't get out of this now. Um, and I suppose actually this is really relevant because you know, if we talk about like a symptom flare, for example, you know, we start to notice that, okay, now there's something we can do. Um, either that awareness is so important, or maybe we start to notice our beliefs starting to wobble a little bit. Okay, well, maybe what can we do to intervene before they completely collapse, you know, before the house of cards comes totally down. And actually we can maybe start to implement some of the strategies that work. What's your breathing practice that works here? Have you done your journal today? Um, you know, or or whatever else it is that you have in your kind of toolbox of tricks and in sort of starting to bring them in before everything totally comes down, because you know that that's a horrible place to be, isn't it? Um, and I don't know if you've got any other hits for when those beliefs do wobble or when symptoms do flare.

Dan Neuffer: 24:50

So I think there are some things that are even important for people when they recover. And I think going into some of those things is a long, extensive conversation that has to have a lot of educational background about why the illness happens and the purpose of that happening. So that we can change our relationship to our experience. But on a very basic level, if we can just start with expecting setbacks. Now that sounds negative, but if we can recognize that setbacks are normal and they will happen, then you don't have to go in that spiral down. You know, oh you know, because all that negative stuff that happens and the nocebo effect and and and the stress and and then not you know falling off the wagon doing all the things that we're doing to help yourself, and you know, it's a spiral down, right? If you're gonna sit back, you just go, oh, I'm just gonna adjust and keep going as best as I can and do the strategies we've talked about about my beliefs, do the strategies physically that were retraining my nervous system and that were healing my body and whatever else, treatments with your doctor, whatever it is, and you keep doing all these things and you'll go back up again, right? So the key is is to refrain the data, not as failure when you have a setback, but that it's feedback, it's a data point, right? Like I know this. I'm not this is one of these quotes that everyone talks about to death, and I'm not even sure if it's really true, but um, you know, being you know a physics background myself, I can't help but be attracted to it, and that's you know, the making of the light bulb. And when Edison was asked, by the way, Edison didn't actually invent the light bulb, despite popular belief. But when he was asked, um, you know, how did you fail a thousand times? And he was like, Oh, it wasn't a thousand failures, it was a thousand ways of learning how not to make the light bulb, right? And and so this is sort of an interesting way of thinking about it that is that there's valuable feedback. Uh we don't have to beat ourselves up of what did I do wrong, but maybe half the time or two-thirds of the time or whatever, you'll go, hmm, this is what I was doing, this is what I changed. Ah, maybe I can adjust my approach next time. Yeah, so that's the one of the key things. Um, I think um I think you know the breathing that you're teaching is uh is fantastic. You know, calm your system before you try and think about anything. Because whatever you're thinking is just on a runaway freight train. Start with some breathing. Yeah. Um, and and then you can reference to your journals and the past progress and the you know the things we talked about to become more optimistic, and and then you know, once you've gone through this a couple of times and gone back to making progress, then these belief wobbles are not such a big deal, yeah. But if you only had one big one and then you go down and then you're stuck in this huge spiral downwards, well, you know, that's a problem. But it's actually good having a little wobble going down, having your beliefs tested, rebuilding and making progress again, because then you suddenly go, Well, hang on, last time I was okay, why am I why am I worried about it? You know, evidence, right? Coming back to that. So even negative experiences can be positive depending on how you engage with them.

Jackie Baxter: 28:31

Yeah, because if you see it as an opportunity to learn um or an opportunity to understand how to do things differently in the future, then that kind of blame spiral that we can get into. Oh, you shouldn't have done that thing. You knew better than to do that. Come on, we've done this before. All that kind of judgment and blame that we can so easily get into. Um, you know, we we can see that slightly differently. And it doesn't make how you feel any different because you still feel absolutely awful. Um, but you are able to slightly reframe that.

Dan Neuffer: 29:01

Well, I disagree. It's probably the first time I've ever disagreed with you.

Jackie Baxter: 29:06

Ah, it had to happen eventually.

Dan Neuffer: 29:08

Because it had to happen eventually, because I actually think it does make a huge difference, it makes it much worse, right? Because when you have these negative thoughts, this negative, I would post to you that they're much worse than the negative thing that you're experiencing. So the emotional roller coaster and this negative, you know, that this change to your beliefs and your outlook and your narrative is much worse an impact on your recovery than the actual dip in your physical progress. Because dips can come down. You know, I I see many people, they have these huge dips, they last months, then they last weeks, and then suddenly they have these big sometimes big dips last two days. It's like I'm too busy to even talk about it, like whatever, right? Two days, who cares? Like anyone's got a chronic illness. Two days is like a laugh, it's a joke, right? We we we suffer for months, years, you know. What's two days, right? So, but yeah, I I think you've got to protect your mindset that that is that is the central station from which you do everything. Yeah.

Jackie Baxter: 30:24

Is this like the sort of the two arrows thing? So the two arrows where the first arrow is the the thing that has happened, the insult or the assault, you know, that that you can't do anything about because it's happened. So, you know, that crash, for example, you know, you've overdone it, doesn't matter why, doesn't matter what you did, you're there, you feel terrible. That's your first arrow. And your second arrow is how you respond to it, and that is where you do have that choice of, you know, do we get into the negative spiral? Do we blame ourselves? Do we do this? Do we do that? Or do we say, okay, this is an opportunity, let's do this breathing exercise, let's do that technique, let's do that, and you know, we can respond in a more suppose positive or a more um productive, I don't know what the right word for that is, but you know, in in the right way rather than the wrong way, I suppose.

Dan Neuffer: 31:17

Well, on the surface, we can say it's the right way instead of the wrong way. But if we look at it from a scientific point of view, the word productive is actually more pertinent because based on everything I have learned, based on everything I've worked out, based on all the evidence and experience I've gathered over the last decade. I would pose to you that it is in those moments where you have a setback that your recovery strategies are actually more productive. So I would say to you, let's say things have been going well this last month and you're doing everything today that you need to, how much will that contribute to your recovery? Okay. And you say, well, let's, I don't know, I'm going to make something up as completely bogus, but let's say I'm going to be that all of the stuff I've done today, tomorrow I'll be 1% better. Right? I would pose to you that if you're having a setback and you're feeling terrible and you've gone back 30% in your functioning and you do all the same things, I would post to you from a neurological point of view that instead of 1%, you've just increased 5%. It may take a little while to show up because you have to, you know, climb up the ladder. The body has to, you know, you have to get healthier again, but you're actually making more progress when you have a setback than when things are going well.

Jackie Baxter: 33:12

Yeah. And again, that's a nice way of kind of reframing that because we do feel a bit down when we're feeling rubbish, don't we? In those kind of setbacks, those crashes, whatever you want to call them. And again, if we can remind ourselves, you know, if this is an opportunity, and actually right now, although it doesn't feel like it, I'm actually making more progress than if this hadn't happened. So it's it's that kind of yeah, way, way of reframing it, I suppose, doesn't it? You know, and and that is really helpful, I think, because it's a it can be a dark place.

Dan Neuffer: 33:44

It can be very dark, and but then you can back that up with evidence to really foster that belief. And this is one of the things I see all the time. People have that setback and then they know, oh, it's gonna take a month or two months or six weeks or whatever to get back, and oh, you know, they feel so devastated. When they learn to engage in uh all the strategies with the doctors, with the physical therapist, psychologist, you know, everything we do in the program, whatever it is, and they make suddenly a recovery in two days or three days or four days or even five days compared to six weeks, right? Or even a week. It's like, how does that change how you think about this experience? And next time you have one of those setbacks, how will you feel? I mean, how much less of a freaking out negative emotion are you gonna experience?

Jackie Baxter: 34:41

Yeah, that's true.

Dan Neuffer: 34:43

So, and this is one of the things I see in the recovery process is that people suddenly they bounce back much quicker.

Jackie Baxter: 34:50

So you don't necessarily stop having those depths. It's that the sort of the the pit is a smaller one, you know. You you don't spend so long in it, you're able to climb out much quicker.

Dan Neuffer: 35:02

Don't spend so long in it. Yeah, climb out quicker. Sometimes it's still deep. Yeah. In fact, sometimes it's deeper. And the reason for that is as the dysfunctions resolve in the body, the body becomes much more strong, much more able to do dysfunction. Okay, it's like if you got something wrong with let's say your clutch in a car and you know, and your engines not running that well, it's not such a big deal. You know, suddenly maybe something the cogs hit each other, and it's like there's a crunching noise, and you're like, oh, that wasn't good, but it's not the end of the world. But if you've got like a brand new, super powerful race car engine in there, it's like it's gonna cause much more damage. Yeah. So when we recover sometimes, uh I've found that sometimes the wobbles are you know more sizable, um, but we can expect quicker.

Jackie Baxter: 35:57

And that actually fits because there was somebody who I interviewed who'd recovered who said that she'd heard several people say that the biggest crash came at like the 95% mark. Um, and actually I had a similar experience. My worst crash, well, what felt like my worst crash was actually kind of what set me on that final kind of trajectory to recovery. Um, you know, I'm not sure I was quite at the 95% point, but you know, it was it was certainly, you know, making really good progress. Kaboom, you know, it was it was the worst one I'd had in ages. And actually remembering that this person had said, you know, biggest crash comes before the greatest reward kind of thing, you know, that kind of got me through that because it was pretty, pretty awful, you know.

Dan Neuffer: 36:43

It's it's it's quite scary. Yeah, and uh, I could share dozens of stories, including my own.

Jackie Baxter: 36:49

Yeah, so that's really interesting, actually, that that sort of makes total sense with what you're saying. So that's reinforced my belief.

Dan Neuffer: 36:55

Yeah, it makes sense. And scientifically we can understand why this happens.

Jackie Baxter: 36:59

Yeah, absolutely. Um, so we've talked about the sort of beliefs that sort of day-to-day. How how do we use that belief, you know, day in, day out? Is it is it this consistently continuing to do the things because we believe? Is it as simple as that or is there more to it?

Dan Neuffer: 37:18

You know, um I think many of us have a like a tendency. Um, I see this all the time. Some people are sort of just pessimistic, and some people are just obviously optimistic despite all evidence. The way I phrase that will probably give you a hint which side I lean on. Which is unfortunately a little bit pessimistic. But I can tell you that it's much better to be optimistic. Yeah. And I think um one of the key things is with that side of things is that we have to realise that we don't have to get it perfect. We just have to work on it. Yeah. Um like I've always had pessimistic tendencies. And you know, I see when other people are really uh optimistic, they just latch onto it and they take action really quickly. And they do the action really well. You know? When when we're a skeptical person, uh it doesn't matter whether you can justify it with science and all this kind of thing, but it whatever. Uh it just it can it's it's it's unhelpful. So you need to do whatever you can to get rid of whatever pessimism or skepticism you have, which is why I always talk to people about the symptoms uh and how they create it, uh, so that we can really then yeah, make make that shift. Um I think uh it's it's it's really about getting these habits in place. Uh it's like first is an awareness, um so that you become aware of what's going on in your head. And then um and then it's it's it's doing all the things we spoke about in this podcast about uh curating your environment, doing positive things, um, controlling your physiology. Controlling your physical now, breath is one of them, but it's only one. Yeah, um you know the body is quite complex. Um people think we have you know a handful of sensors, but this is not true. Yeah, we have dozens of senses, dozens, yeah, all throughout our body, right? Internal sensing and um very complex. And so yeah, it's it's really about uh it's like a habit, it's about creating a a lifestyle and and habits that support our beliefs and our and our recovery.

Jackie Baxter: 40:12

And for those people who find habits very difficult to get into, now I'm someone who struggles to get into kind of habits and routines and patterns, but once I get into them, that's me. I will never leave. Um, you know, and and I know other people find find similar. Um, but for whatever reason, you know, people who are like, okay, well, I kind of know what I need to do, or I've got some idea of some of the things I need to do, but I just can't make myself do it. You know, I just can't get into that routine. I can't make myself do my breath practice, can't make myself stop eating chocolate, you know, whatever those things are. What would you say to them to help them get started?

Dan Neuffer: 40:53

Very easy. Um don't do it. Eat the chocolate, skip the breath practice And then eat a little less chocolate and just take one breath just one breath and half the chocolate and it's really those little changes that moment where you have that choice again. It's in that moment you have that choice, and maybe you feel like you're not up to making the best choice right now, right? But make a better choice. Just a better choice. And you know, I think one of the reasons, Chris, why do you not do it? Let's let's let's look at it. Why why why didn't why didn't you not eat the chocolate if you didn't want to eat chocolate, which by the way, I think is a crazy notion. Okay, okay. I I love chocolate. Uh you gotta eat chocolate, just yeah, but it's about the amounts, right? But um, and maybe even the type. But the point is this, what what is it really that's the problem? Right? The problem is that you feel this compulsion, right, to eat the chocolate. And it seems too hard to not eat the chocolate. And if I weigh everything up right now, the pull towards the chocolate and the pull away from it, it just doesn't measure up. And so we then say, well, then I'll fail because I just can't bring myself. And and the problem is that we have this perfectionist attitude, this all or nothing. Let's say the breast exercises. Oh, gee, maybe I have to do three sets, maybe two, three different exercises, you know. And for anyone who hasn't been chronically ill, they wouldn't understand. But you know, everything's hard. Like even something that takes a few minutes, when you're doing it, it feels so hard sometimes, you know. Um, even making yourself an easy something good to eat seems too hard. Everything's too hard, right? And so then we just go, oh, I can't do all that, so I'm just not gonna do it. Then I feel like a failure, I feel down about myself. No, here's what we do just go, I'll just do a little bit. If I don't think I have to do it perfectly, but we tend to think if I don't do the full thing, then what I'm doing right now has no value. Here's the point: even if it has no value on paper, like even if I had some magic computer that could measure exactly the impact on my health and say that is not enough to have a therapeutic effect. You know, this is true, right? For even medications, there can be certain levels that just don't have a therapeutic effect. The point is you are still getting the therapeutic effect of changing your habit because it'll make it easier next time. Because if you go, oh, I'll do something, I'll I'll do one set of the breath or half, and then you go, Well, that wasn't so bad. You have a positive experience, you feel like you did something, you don't feel so bad about yourself. To do that again next time won't be an issue. So think progress, not perfection.

Jackie Baxter: 44:19

Yeah. I mean, and that's something that I need to keep remembering as well. You know, I'm I'm a recovering perfectionist. Um, you know, I still feel that creeping in sometimes, and I have to, you know, notice it and say, oh, hey, hey, perfectionism, I don't need you. I'm gonna do half this task or I'm gonna do it enough. Um, and it's it's that idea of, you know, you got to start somewhere, haven't you? And you know, sometimes, you know, particularly when we're so unwell, that somewhere is so unimaginably small that you know former you wouldn't have bothered. We wouldn't even have noticed. But, you know, when you're in this position where you're not well, where you are, you know, you've got so much fatigue, you've got so much else going on, everything is so difficult, as you say. You know, well, okay, how far, how far back do we have to go? Okay, that's where you start. You know, and it's sort of it sort of doesn't matter how small it is, as you say, you know, you start there, and then over time it does get easier. You know, you keep doing it, you keep doing it, and you can do a little bit more, you can do a little bit more. And then, you know, once it becomes a pattern or a habit, then it it's a bit less difficult to make yourself do it, isn't it? And then you get the bigger impacts over time. So yeah, yeah, I'm I'm an all or nothing person too. So I can very much relate to that problem. And it it does, it does get easier. It really does.

Dan Neuffer: 45:48

I mean, if you think about it, it it really makes sense. If your experience of whatever you do is good, you feel a little bit good about yourself, we've done something, it's good, then why would you not want to do it next time?

Jackie Baxter: 46:03

Yeah.

Dan Neuffer: 46:04

But maybe it's even better to do less. Because if you did the full thing and it felt awful and felt too much, and you were stressed out, the next time you're like, oh, I definitely don't want to do it. So maybe failure is the real path to success. Right? Because if you try and do it right and succeed and tick all the boxes, and then it's like it was such an awful experience. Suddenly you're not doing the next day or the day after, or maybe even the day after that, because you just think, oh I can't face it again. So seek to make your experiences positive, all your recovery actions. This is really one of the secrets of recovery, I think. If there is such a thing as a secret. I mean, I'm trying to not make anything secret, you know what I mean? But like, but like that, that is sort of like the the secret source is to try and do it in a way that actually feels positive, it feels good for you, uh, rather than disciplined and hard, you know.

Jackie Baxter: 47:05

Because again, for a lot of people, and I will put myself into this category as well, you know, that that's that's what came before. It was that, you know, having to do all of it, it was that pushing, it was that kind of discipline, but like over discipline. Um, you know, and and actually for me, letting letting go of some of that and saying, actually, I'm gonna do some of this rather than all of it, and that's okay, was something that was very difficult for me. But it was also something that was really helpful because yeah, you know, the the shoulds creep in, don't they? You know, oh, I should do this, you know, or or or you know, with with breathing exercises, oh, you know, that length of breath is what I should be doing because that's what you know somebody else said. Well, if that doesn't feel good in your body, then it's not going to help you. Um, so it's that kind of, you know, what is good for you? And you know, just yeah, doing doing those little little bits.

Dan Neuffer: 48:01

Look, I mean, Jackie, uh I always find it, you know, very insightful to whenever I get interviewed by people who've recovered, because you know, the questions and topics you ask, I think often are not the ones that the big population of people with the illness always want asked because they don't realize that how important they are. It's only once people recover that they realize all these things are important, which is why they talk about these nuanced uh aspects of of of recovery. Yeah, and and I think the key thing uh you know, if if I was sick and I had my time again time again, I would I would seek to lean into this experience of other people. Because you know, the the questions you've asked me and the topics, I think when I was ill, I I would have been like it just would have like I wouldn't wouldn't have gotten into the first minute. Like, what does this have to do with anything, you know? Like I've got a real illness, I need something to fix me. Why are we talking about this stuff, you know? It's only as you understand more and gain experience that you realize that this is the most important thing.

Jackie Baxter: 49:18

Yes, because it's what underpins all of the actions that you make, and those actions are what is going to build your recovery progress, however small it is and however slow it is. Exactly.

Dan Neuffer: 49:34

That's right. Um, mindset is everything. I mean, uh, you know, my program is is like some weird researcher slash doctor slash psychologist alumni, right? And so I get to always ask the question. And and you know, one of the things is the biggest frustration for physicians is non-compliance. You know, that the patients come in, they have a problem with an illness, a disease, they get medication and doc the patients don't take it. And the reasons patients don't take it is because they either uh are of the view that this illness is not something they have, or that they uh it can't be fixed, or that the medication won't help, or whatever. Yeah, or you know, they might think the medication is not safe, right? Which is understandable, but um then they need to ask the questions and and and you know make their choices of whatever they think is best for them. But the point is um compliance is is is an issue and it can be for really basic things, yeah. You know, really basic illnesses, yeah.

Jackie Baxter: 50:43

I think as well, you know, I it's now about two getting on for two and a half years since I recovered, um, which is totally wild. And you know, it the things that I learned and you know, the the sort of beliefs that I built and the understanding that I now have around health and you know, all of that sort of stuff, it's what now makes me continue with those things. You know, what makes me a healthier person now and more resilient to you know all the stress that life still throws at me. I'm just better at dealing with it. Um, so things like you know, my daily breath practice, I do get up in the morning and that's the first thing I do. Um, I'm not perfect and I do plenty of things that I shouldn't. And you know, I eat too much chocolate. Um, you know, I don't always get enough sleep. Um, but you know, it's it's the things that we can do, isn't it? And you know, that that kind of belief in this being something important that makes my health better, you know, I think is a is a really great lesson for obviously recovery, but also for for staying healthy, you know, as healthy as we can for as long as we can afterwards.

Dan Neuffer: 51:55

You know, recovery is all nice and good. We have to understand why we got sick, we have to understand the neurological and physiological mechanisms, we have to understand what led to them, whether it's an infection or whatever, but what was really the reason for it? Because it's not just about whatever we experienced, it is the response. Yeah, okay, um, and it's complicated, yeah. Um, there's many factors involved, but we need to understand this so that we create uh uh ways of negotiating uh our life in a healthy way. And I would pose to you, and this is taking me time to build up this belief. Uh, it first got sparked with an interview with Beth French, the ultra marathon swimmer. Um the notion that it's possible to not just recover from these illnesses, but to be more resilient than the average person. Yeah, yeah. Uh and uh I I struggled with that. There was always a part of me that thought, well, we're probably more prone to it, having had it, because the brain would remember how to go into this state of dysfunction. And yeah, again, a good science narrative behind it. But the evidence, which has taken me years to collect, has shown actually um that people can actually be more resilient than than someone who's never had this illness.

Jackie Baxter: 53:35

Which is a beautiful way to finish, I think.

Dan Neuffer: 53:38

Lovely, love, love, lovely thought, isn't it?

Jackie Baxter: 53:42

Exactly. Yes. And you know, I I think I would agree with that in with my you know personal experience of one. Um so yes. Dan, thank you so much. As always, it's an absolute joy chatting to you. I think we've covered a lot. Um, so thank you so much for giving up your evening. Uh, thank you for getting me out of bed at the ass crack of the long. And um let's hope we can do this again sometime. Um, it's been awesome.

Dan Neuffer: 54:10

I would love to, Jackie. I I really appreciate your insights. Uh, it's always there's a special connection when you're talking to someone else who's recovered. And uh I don't know, there's a special shared view of the world.

Jackie Baxter: 54:23

Yeah, I agree very much. Thank you.