Long Covid Podcast
The Podcast by and for Long Covid sufferers.
Long Covid is estimated to affect at least 1 in 5 people infected with Covid-19. Many of these people were fit & healthy, many were successfully managing other conditions. Some people recover within a few months, but there are many who have been suffering for much much longer.
Although there is currently no "cure" for Long Covid, and the millions of people still ill have been searching for answers for a long time, in this podcast I hope to explore the many things that can be done to help, through a mix of medical experts, researchers, personal experience & recovery stories. Bringing together the practical & the hopeful - "what CAN we do?"
The Long Covid Podcast is currently self-funded. This podcast will always remain free, but if you like what you hear and are able to, please head along to www.buymeacoffee.com/longcovidpod to help me cover costs.
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The Long Covid podcast is entirely self-funded and relies on donations - if you've found it useful and are able to, please go to www.buymeacoffee.com/longcovidpod to help me cover the costs of hosting.
Long Covid Podcast
148 - Dan Neuffer - Balance, Resilience & how we can prioritise recovery
Episode 148 of the Long Covid Podcast is the second in this two-part series with Dan Neuffer. Dan is a coach working with people with Long Covid & ME/CFS. He is also an author of "CFS Unravelled" and has developed the "ANS Rewire" Program which has been mentioned by some others on the podcast previously.
In this episode we dive into
- What does recovery mean?
- What the illness is trying to tell us
- Balance in life
- The 60-80% sticking point
- Appreciating small improvement & building confidence
Catch up on part 1 of this interview from last week HERE
Dan’s book: https://cfsunravelled.com/cfs-unravelled/
Dan’s original recovery stories: https://cfsunravelled.com/cfs-fibro-recovery-stories/
Dan’s YouTube Channel: http://www.youtube.com/@CFSUnravelled1
Dan’s Recovery Program: https://ansrewire.com/info-request/
The "How resilient can recoveries be?" Podcast episode that sparked off this whole discussion
Dan's previous episode on the Long Covid Podcast where we talk more about Dan's story, his program "ANS Rewire" and it's role in recovery.
Message the podcast! - questions will be answered on my youtube channel :)
For more information about Long Covid Breathing courses & workshops, please check out LongCovidBreathing.com
(music credit - Brock Hewitt, Rule of Life)
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The Long Covid Podcast is self-produced & self funded. If you enjoy what you hear and are able to, please Buy me a coffee or purchase a mug to help cover costs
Transcripts available on individual episodes here
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**Disclaimer - you should not rely on any medical information contained in this Podcast and related materials in making medical, health-related or other decisions. Please consult a doctor or other health professional**
Jackie Baxter
Hello and welcome to this episode of the long covid podcast. Today's episode is a continuation of my discussion with the amazing Dan Neuffer, which we started in last week's episode. So we've talked through a whole load of stuff, which I would highly recommend you listening to in the previous episode. Today, we're going to continue on talking about things like, what happens when we get stuck in our recoveries, and how can we break through those what can we do? When should we prioritize recovery? And how can we do that? So it was a whole load more up for discussion today, and hope you enjoy it. So welcome back Dan
Dan Neuffer
Thankyou, Jackie. It's my pleasure.
Jackie Baxter
And I suppose taking this sort of back to the topic of recovery, I think earlier on in my illness, I sort of had this idea of recovery, that it was going to be perfect, you know, once I got to the top of that, you know, Pinnacle, and I, you know, hit the magic button, and I was finally recovered, I was going to slot into this perfect life, walk off into the sunset, and everything was going to be dreamy, and it was going to be Great. And it doesn't like that, because life isn't like that. And maybe this is an interesting topic, actually, because the topic of, you know, what is recovery? And you know, recovery Well, certainly for me, isn't this magical, wonderful nirvana. It's having the resilience to deal with that stuff when it comes along. So being recovered doesn't mean that I never get stressed. It means that I recognize that stress and I deal with it appropriately, rather than going into a two week crash. And, you know, I get sick like anybody, and when I get sick, I don't go, oh, well, that's a nuisance. I'll keep working. I'll work all week. I'll go climb my mountains and go for my big long run at the weekend, because being sick doesn't stop me. You know, I recognize that. Oh, well, this is rubbish. I feel terrible. Well, I'm really good at feeling terrible now, so actually, I'm going to rest. So when these things do come along, like, like they do, you know, you recognize them, you understand them, and, yeah, you behave appropriately, and you have that resilience to deal with it, rather than that. Yeah, perfect idea of everything that doesn't exist. So I don't know. I mean, I suppose I'm curious what, is your idea of recovery? You know, what does recovery mean to you?
Dan Neuffer
Look, Jackie, I think I mean, what you're sharing is great wisdom. But you know, the people listening will probably go, Well, you know, it's not because I didn't just rest or whatever. I get a flare up. It just happens. And so you wouldn't be saying that because you've had the illness. We all know that that's what happens. So there is a difference between talking about these psychological and lifestyle and spiritual factors that lead to the illness that can lead to relapse. There's a difference between those things and your everyday experience when you have the illness, because when you have the illness and you have a dysfunctioning autonomic nervous system, then you might be doing everything 100% right, and suddenly you crash. Or, you know, it's not like, Oh, you crashed because you did the wrong thing, or you made the wrong choice, right? Um, if it was only that simple, I think few people would be ill as long as they are, you know. So what is recovery? Recovery is when the autonomic nervous system is functioning normally, and we don't get sick because we overdid something, or because, you know, a normal, healthy person, they can not sleep for two days, and they can go to a rock concert, and, you know, mow the lawn and, you know, they'll be tired for days, and maybe they'll get a cold, but they're not going to get a flare up, right? That's because they don't have this disease, right? And so I see recovery, as many people have said, Oh, I'm recovered. I'm like, You're not recovered. You just got less symptoms. You're higher functioning, right? Because they say they recover because, you know, they seem to function medicine, doctor, they're taking 20 supplements. They doing everything, right, all the things you said. They're doing, all of those, right, the lifestyle and sensible and blah, blah, blah, not pushing themselves and all of this stuff. And then their symptoms are like what they think is very low, and so they say they're recovered. That's not recovered, that's just being wrapped in cotton wool. Recovered means you can go out and you can overdo it, and you can push yourself sometimes. And and you don't get flare ups. So it's about the symptoms going away and not coming back just because you've done something that a normal, reasonable person would that's what recovered means to me. Yes, but you know, how do we know we fully recovered? And all of this? There's two problems with that. There's a difference versus the dysfunction being gone. And then there's another thing. Is the health and mortality. If I take your average person who's got in inverted commas, nothing wrong with them, their ability to function will very different to the next person. I mean, how much can they run, how much can they lift, how much can they go without sleep? How much? Whatever, right? How do they feel? They would know how they feel. They just, I feel like. I always feel right, okay, but the next person might go, I feel sensational. Yes, yeah, we can't compare that, because nobody can test drive the other person's brain. Yeah, and this is why people will sometimes say, oh, yeah, I'm 100% recovered. And then I speak with them six months later, and they're like, I'm 130% recovered there, right? They obviously can't be 130% recovered, but they feel they have an increase in health and vitality, but they will recover from the point of view that they were symptom free, and they were able to engage in things reasonably and not get flare ups. So that's what I think recovered means. The problem with all this Jackie is this singular seeking of recovery, I think is misguided. Because people went off and talked to them, it's like, oh, when I'm recovered. When, when am I? They think, oh, now that I will be recovered. Now this problem is gone and I can just live life with crazy abandonment. Yes, I'm not saying that they cannot be resilient. In fact, as we saw, per that video, the one that was so popular recently in my podcast, I'm actually suggesting some people with this illness who recover can be more resilient than people who never had it. Yeah, I would include myself. I'd include people like Beth, French Ultra Marathon record breaker, right? I mean, what normal person can do that without getting CFS right? Okay, but the thinking that the illness is the problem and you have to get rid of it and then everything will be fine, it's misunderstanding what's going on in the nervous system. Because from my point of view, or should I say, from the nervous system's point of view, I believe that the illness is not the problem. The illness is the solution. It's just a really bad solution. Yeah, and I often tell this anecdote about, like, imagining making Christmas dinner and all of this kind of thing, and suddenly the electricity goes off. You would say it's a problem. You can't hear bublaze singing, you can't see the Christmas lights. Your Turkey is raw. Yeah, you're stumbling in the dark with your wine glass over your white carpet to answer the front door in 10 minutes. This is not good. Everyone would say it's a problem. Everyone except the person who dropped the hair dryer into the bathtub upstairs, they don't think it's a problem. I think it's wonderful. The electricity went off. It's kind of like the nervous system is just saying time out. I mean, I don't know what to do here. I don't know everything's now going screw I'm going really badly one way, and now you're getting all these problems in your body and dysfunctions, and I go really bad the other way. And I'm still getting other problems and dysfunctions and and whatever stresses are going on in the body outside the body, none of us going away, no matter whether I go sympathetic, parasympathetic or wherever I go, it's a mess, and I think the brain's just trying to do the best that it can, Not a solution from your point of view or my point of view, but the brain is just trying to do its best, and it becomes dysfunctional. And we can say, Oh, I just have to fix that dysfunction. Yes, that's what I said when I wrote my book. That's probably what I said, even when I created the ANS rewire program. It's not what I say all these years later in experience, because I have all this experience in seeing people plateau breakthrough plateaus, all this experience of people relapsing and recovering again. And when you look at all of that, you can see that the problems are often created by how we respond to the stresses, including how we respond to the illness itself. And look, I suspect I would have not reacted well if someone said what I'm about to say when I was ill. I. I suspect I would have gotten very angry, but I guess what I'm really trying to say is the illness is really your friend. The illness is trying to help you find a homeostasis in your body and by default, it's a homeostasis in your life. And if your life's out of balance, your body is out of balance, and it's trying to bring that back into balance. And we can look at it from a purely scientific point of view, or we can look at from spiritual point of view. That makes no difference. It's the same story. So it's about leaning into it, you know.
Jackie Baxter
And coming back to what you said earlier about this kind of empowerment, there was something that really helped. I can't remember who it was that said it, but this idea that your nervous system is trying to protect you, which is why it's, you know, shut down effectively. You know, it's like a fuse box like this, the situation you described with the hairdryer. You know, if you overload the system, the system will shut down before it blows up, we hope. And that is kind of what my nervous system did to me. And you know, it then took me a while to dig myself out of that and understand what was going on. And as you say, not just fix, quote, unquote, the dysfunction, but actually work out, I suppose, what it was that was causing the dysfunction in the first place. Which brings us back to kind of what we were talking about, about patterns and things that came before the illness, and why, I think actually what happened before is really relevant, because maybe things are feeling better, and then you, you know, insert yourself back into quote, unquote, normal life, and you get hit by a boss who shouts at you, and you go for a really long run, and then you get exposed to a virus, and suddenly the body goes, whoa, kaboom, and you you relapse, or you become ill again, or whatever that situation is. So I think, you know, bringing us back to what is recovery, it's that, I think it's the ability to push yourself, it's the ability to to deal with those stressors without crashing and burning. I suppose,
Dan Neuffer
Jackie, and you know, what you're saying is so true and and I just want to for anyone who's listening, and I want you to think this is like an esoteric kind of conversation, I want them to recognize this is about very practical, not well. Once you're well, and then you're like, doing all these things. What about how do I get well? Exactly? And my point is that people are doing this when they're sick, these issues that we they're not like, oh yeah, the spiritual journey of, Why did I become unwell, and how will I live balance when I'm like, Forget all that. Forget all that. Right? Now you're sick. How do you get better? Well, the very same discussion is relevant, because I can tell you, virtually everyone I speak to when they're ill will do too much and too little at the same time. And you go, Oh, well, how they're doing too much? They're bent bound. They're doing too much in bed. They're not lying there resting. Ah, so lovely. Oh, listen to the birds outside. It's so warm and cozy in the bed. Oh, I'm just gonna lose no no doesn't look like that. Trust me, I've been there. It's nightmare. I'm not gonna be in forever. I'm not dying. What's gonna happen? What kind of life is this? And then as soon as they feel that slightly, the slightest iota of feeling a smidgen better, they'll be off in the shower, right? Maybe washing their hair, not me, but someone else, maybe, right? And so that's exactly what. What happens? Yeah, they don't bask in resting. Yeah, since they're going injury, they blow it. And people are like, you know, if this is what you know, I will say, this is obviously not a visual discussion. But I always say, if you know this is what you can do, this is what people do do. In other words, they're redlining. They're going right to the limit. And they do that when they're 100% well, and they do it when they're 5% functioning. And this idea of pulling back from that, think of it as being lazy, you know, and this is really hard, because as we start to recover, I mean, you know, we've already been lying around like slugs, you. For a long time. I mean, it doesn't exactly feel like a, you know, wonderful life. It seems wasteful and frustrating. And people have passion. They want to engage life. They want to do things right, and so as soon as they can, they do right, but they do too much because they don't recognize that. You know, they gotta play the the medium game and the long game, but they're all playing the short game. They're like, Oh, if I don't do this now, then what will I have in my life? Yeah. Well, you know, if you don't have this illness, you can do what you like within reason, yes. And so we've got to prioritize that of all else. And that get leads to some really hard conversation for parents, for people with sick parents, people with children, whatever. Yeah, it gets a fronting, and not everybody can make the single minded prioritization of their recovery their sole goal, yeah, which sounds like it would be reasonable, responsible, loving, caring and a good person. But from my point of view, I always go, you're better person. If you're well, you're a better person. If you're not a burden, you're a better person. If you don't miss out on doing all these things that you think you're missing out on people now, like, you know you're not looking after someone or doing something for someone. Well, who cares? How does that compare to not doing those things with them ever? You know, I've got like, 5000 years of suffering that I've got a deep knowledge of, roughly through the people I've helped. Yeah, you get frustrated with that. That's a lot of suffering. And there comes a point where you have to say enough is enough, and get a little bit a little bit militant, militant self love. That's what we need.
Jackie Baxter
Again, it comes back to everybody's different, aren't they? You know, everyone's situation is different. If you don't have dependence, then maybe it's easier to prioritize your recovery and your own health. Whereas, if you have five children and you are responsible for them, you know, it's a different conversation. It's more difficult, you know, maybe, you know, requiring asking for help from other people, and that might be difficult.
Dan Neuffer
It's not about the details. Jackie, sorry to interject you there, but whilst you're on that topic, the parent with the five children. It's not about the situation, it's about the determination. And you know, we can't have this conversation because it'll take too long today, but if we were to push that point, I would push that point all the way, and I have done with many people. Yeah, and you think you have responsibilities to your kids. This is the world we were talking about earlier, about we live in this world where everything should be perfect, yeah, what you have to take your kids to lessons? Do you have to make your kids breakfast? This is all crazy talk. This is all talking in this world where everything is perfect. What about when you're bed bound? Who's taking them to that piano lessons? Then who's feeding them them? No, you change the rules. You change the rules of what you said had to happen, and now you feel you well enough. You feel a sense of obligation, responsibility to fulfill these duties. And I say your responsibility is first and foremost to yourself. Because I don't believe that the children will starve to death if you don't make them the sandwich right now, even if they're three, even if they're two, I don't believe it. I think someone will feed them. I think someone fed them whilst you were in bed, when you were bed bound, and this is where, oh boy, that will bring up a crazy amount of emotion, maybe some anger with some people. I get it. Why am I putting myself out there like that? Because I'm fighting for those people. I'm fighting for the people who might be most offended by what I just said, yes, because those people are too tough, and their toughness and determination and the unwavering standards of what things should be like for their family, for their loved ones, for their community, these are wonderful people doing Wonderful things, but the cost to them as individuals is unacceptable. And when they are well, their ability to contribute dwarfs anything they think they're doing now into insignificance whatever they think they're doing now, it's nothing when you are well in. Comparison to what you're doing now, when you're well, it's nothing, yes, especially once we take the measure of your own suffering, that's something. It's not okay for you as an individual to suffer like that so that you can fulfill the duties for what has to be done. And frankly, the maths doesn't add up, the benefit to other people and the suffering to yourself doesn't add up. We've gotta strive for recovery, and I make no apologies for being unwaveringly focused on that sole objective. No matter what someone's situation is,
Jackie Baxter
we hear people saying, oh, it's not selfish to prioritize self care. And you know, I mean, what your definition of selfish is? You know, is going to vary person to person, but even if it is selfish, it doesn't mean that it isn't important, and that actually, yeah, putting yourself first. It's like they say about on the plane, isn't it? You have to put your own oxygen mask on before helping other people. You can't help other people if you aren't in a position to help yourself. So I suppose it comes back to that, isn't it. You know, you have to look after you.
Dan Neuffer
And look like selfishness is considered bad thing in our society. But if I just go back 1000 years ago, it would have been considered to be a rock star, to be selfish. The more selfish you are, the more successful you were. And we now have these moral overlays. And obviously, I mean, I get it, you know, like I've spent a lot of my life serving others, right? I'm not one who advocates for a selfish lifestyle, but what I'm saying is that it's all about context, yes, and sometimes we need to be selfish, and sometimes and those around you need to be selfish, including your children. Yes, and if you can't teach your children to be selfish, who will you want to teach your children to be selfish when it's required, and you want to teach them not to be selfish when it's required, right? But we again, this is the world we have. It's very polar. It's not like there's no gray in the world anymore. It's all like, either it's like this, it's like that, and now selfishness is bad, full stop. No. Selfishness is wonderful, just not all the time. You
Jackie Baxter
know, it's like a lot of things, isn't it? You know, moderation. You know, chocolate isn't bad if you have it occasionally. Chocolate's not great if you have it. You know, for every meal, it's that kind of balance. I think one of the words that I have really taken on since recovery is balance. Yes, push yourself, yes, but balance it out with looking after yourself as well. Because you know you have to. We know what the cost is now when we don't. So, yeah, I think it's that balance. Isn't it in our lives that I didn't have before,
Dan Neuffer
that's everything that is such wisdom, such wisdom you're sharing, you know, because, because the thing is this, if you don't have balance, the tiniest thing will completely dishevel You, like you don't need a lot. I mean, you look at a lot of people who get sick and go, Oh, what happened when you got sick? And they tell you something that was really shouldn't be a big deal. Something happened, you know, crack up with someone, I got dumped by someone, or whatever it is. Why is it such a problem? Because there isn't a balance. You're not resourced appropriately, and therefore the meaning of that situation becomes so bad, yeah, or what if someone did something bad to you? Out and out nasty? Okay, they do that nasty thing. Now I'm going back to my loving community. You know, it's not a problem, but it's like it's for most people, it's just a straw that breaks the camel's back, so to say, because they're out of balance. So it's never the stressors, it's how we respond to them, and it's the balance that we have in our lives, and that's why recovery is such a challenge, because when we are sick, we are not the best version. We don't make good choices. A lot of the time, we are emotionally strained, to say the least. Often we suffer from mental health problems as a result of the strain we've gone through, and our life is completely unbalanced. What social bit, what family interaction, what a healthy outdoor I mean, whatever it is, it's it's a shambles. That's why recovery is so challenging. But if we can recognize what is the game we have to play, then we can move in the right direction. And I think maybe that's the thing to take away from today, is is the power of balance? I think you told a really, really, you made a such a poignant point about it. Kind of summarizes everything. And
Jackie Baxter
I think what you just said about moving forward, you know, we talk a lot about recovery, and you know what that looks like, and all of these things. But, you know, for people who maybe are not so far along in their journey and are sort of thinking, well, recovery, yeah, that would be lovely, but it just feels so distant. You know that idea of, yeah, that's the goal. Let's put it up there as the goal, great, but we got to move forward to get there. So, you know, we find this first thing that helps. You know, in your tip about understanding why that helped was, was really useful, and maybe that then leads you to the next thing and to the next thing and and to kind of to keep going, even when you sort of feel like you've got stuck, you know, keep finding those things, whatever they are. You know, different people are going to have that different journey. But even when something doesn't work, you're still moving forward, because you don't have to try that thing again, rather than, you know, being upset because, you know, okay, feel upset. It didn't work. But then move forward
Dan Neuffer
exactly, look often. Tell people to forget about recovery, because it just seems like this huge, overwhelming, stressful burden. I go, forget about it. Literally. We're not going to get you've recovered. We're not going to 100% Forget it just you're 20% functioning. But how good would life be just to be 35% functioning? Let's just make that our goal. Maybe recovery can happen for you. Maybe you can just go from 20 to 35 that's it. Maybe that's really all there is for you. And let's just do stuff. And if you have more ups than downs, even though you have downs, even though you have setbacks, if you have more ups and downs, then over a period of time, you'll make progress. And when you reach 35% I'm just going to change the rules on you unapologetically. Will it be amazing about 50% but the danger, the real danger, is, when many people reach somewhere between 60 and 80% that they can lose their motivation, because they kind of go well, they're coping enough, and their drive to live their lives is higher than their drive to get recovered, and so they don't find that balance that you spoke of, and they get stuck. Yeah, and when I so many times I speak to people, and you know, I always ask when I speak with them, you know, what were you like when you started the program, percentage functioning? What are you now? This is not an accurate number, but just a ballpark, and they tell me, oh, 20, I'm 40, I'm 20, I'm 60, and I was five, and now I'm like, 50, and they're like, glowing. They're happy and excited. But you know, when they hit that 60 to 80% I'm always getting nervous for them. Always got I know you feel excited. I know it sounds really great, but you're on danger territory right now. And the danger is that you get stuck there because it's, it's palatable. You know, 60 to 80% functioning symptoms are often quite low, and that's palatable, and sometimes can leave us stuck. That's why I have to have those tough conversations with mums. So
Jackie Baxter
for those people that maybe are stuck in that sort of 60 to 80% and they're doing much better. They're maybe functioning. They're maybe back at work part time. They're, you know, whatever that situation is, you know, they're doing a load better, but they're still unwell. You're talking about those kind of tough conversations about prioritizing yourself. What else would you kind of suggest for those people to get the rest of the way? Are you allowed to think about recovery at that point?
Dan Neuffer
Look, I'm always like, up for people thinking about recovering. I only mentioned the lesser goal when people find the two fronting to think about full recovery. Yeah, I I'm never satisfied until people are fully well, because I want them to be have a robust health. You know, when you're like 90% one bad day away from maybe being back to 60, you know? So we want to get fully recovered, and we want to be stay fully recovered. We want to get a resilient recovery. And it's not the end of the world when people have relapses or when they have setbacks, not if we understand this whole journey, yeah, but when people are around that place where they feel comfortable, they need to start feeling uncomfortable. And of course, this is not something that we seek in our society that's coming. Back to that organization we had a little while ago. Yeah, people don't walk through the snow cold. People don't sit in 45 degree heat. Yeah, they've got the air conditioners going on. Yeah, I grew up there was no air conditioner on the car. I mean, I was a journey, one you just sweat. My children's generation, if you know, if it's like 28 929, degrees, they they're screaming how they can't take the heat, it's because they're not used to the discomfort. And I'm sure that my parents would have said the same thing about me, right? But there was a parent where, you know, I think these things go in cycles, yeah, with how society changes. And so it's not that we're always getting more and more like that, and I think it goes in cycles, yeah, eventually. What's that saying? Tough times make tough people and good times, like weak people, yeah. And so we are all victims a little bit of that experience. But I think you have to be okay with being uncomfortable, and ask yourself, think about how you lived the last number of years at whatever percentage and below. Imagine you go below again, you get down low. How would you feel about that in 10 years time, having had another 10 years like that, what are the things you missed out on? And I don't like to screw up the pain too much, because, you know, we kind of vulnerable. We kind of can't take too much of that. But if we're really stuck. Maybe we need to do that a little bit. And on the flip side, we would need to say, well, what if I was actually 100% well, okay, yep, if I'm a parent, I might say, oh yeah. Well, I go to the kids soccer games, and we have gone on holiday. And, you know, I spend a little bit time on my own in the cabin whilst they go with the other parent and blah, blah. But what would be like to go skiing with the kids all day long, on scuba diving in a Great Barrier Reef? Or what would it be like just to play soccer with them instead of watching them play soccer? You know, you know. So you're going to have a go to and get away from motivation. I used to be all skewed towards the pain side, but I've actually learned that later on in a recovery, the other side is more important. Yeah, the pleasure, motivation and and I guess because not just my my own experience was that I couldn't take the pain literally as well as figuratively. And that was the theme I saw in all recovery interviews I did, is that people reach this point where we just a breaking point, I can't live like this anymore, and then they had their turning point, like magic. So I was like pain. That's it. Tap into it, you know. But then when we're vulnerable, sometimes we just we can't take any more pain. We're just trying to keep it afloat. And once you get to 60, 70% you're not interested in the pain you have. In the pain, you're happy to be out of it. So that's why we then need that pleasure motivation. So seek those things. Is what I say to people. Little bit of stick, a lot of carrot.
Jackie Baxter
That was exactly what I was about to say, yeah. And maybe finally, you know, I always ask people, when I interview them for recovery stories, you know, what did that sort of moment of recovery feel like to you? And for some people, it was a kind of a very sudden, bizarre, I'm recovered. And for some people, it seems to be a much more kind of, very gradual, kind of, I'm almost there. I'm, you know, kind of, kind of more sort of a thing and, and some people realize, you that they maybe, they look back and they were like, Oh, actually, I've been recovered for months. I just kind of didn't notice. That happens all the time. It's very interesting, because, you know, everybody's experience is different, and that kind of, you know, what, what does recovery look like to you? Is always, I think it's such an interesting question, because, yeah, that that kind of moment, or, you know, period of time for some people does seem to be, yeah, very individual. First
Dan Neuffer
thing I want to say is I don't want to devalue a partial recovery. Recovery progress is what we want. It's wonderful. I just don't want people to settle right and I know sometimes this is hard because we don't have this magic cure thing, right, and sometimes it's straightforward and sometimes it isn't, but we need to keep striving and ask the questions, yeah. I'm not trying to say, oh yeah. Partial recovery is nothing. It's a lot. I speak to people every week who are in tears to me in tears because they're like my life was not worth living. I'm just lying a bit, and now I can go out, I can do things 70% functioning. Then, you know, spoke to a lady a little while ago who we said, she, she had her first bowel movement in her life. She, she was in a fifth. 90s, I think late 50s, she never had a normal bowel movement her whole entire adult life. She can't even remember as a child having one, right? I mean, but you know, you say, what do people enjoy? Well, you can see that it can be all kinds of things. You know, my experience is like, it's not like, oh, I want my managed to go on holiday with the children and this and that. You know, what the honestly, the thing I heard more than anything else, is people like doing the shopping. You know, the grocery shopping. It seems that everybody has their Nirvana moment because they can do their grocery shopping. I think grocery shopping is such a great thing. Maybe it's because we suffer so much trying to do the things we have to do. Do you know what I mean? And you go and it's such a burden. And so when you can just do it easily, you just appreciate it, even though it's not like a fantastic thing to do, like a big holiday or some fancy, you know, skydiving or something. But that's, honestly, the answer I get for most people, is, is shopping for groceries not very sexy, I know, but that's, I don't know, you've done plenty of recovery interviews. Is that not, are you hearing something different than me? Yeah,
Jackie Baxter
definitely. I mean, you know, of course, there's the big things, but I think if there's something that this experience teaches us, it's the importance of those little things. You know, when you're really unwell and you can't do the big things, appreciating the little things, where actually you can hear the birds through your window, which seems, you know, seems like such a ridiculous thing to you know, a person who hasn't had this experience, but to you and I, and people who have actually, sometimes that's just, that's something wonderful, that you can hear birds without them making you go, you know, because you're oversensitive, or or whatever it is, yes, it's funny that you talked about shopping, I had a sort of similar but slightly different experience that helped me to realize that actually I was recovered, which was where I drove my car into a ditch, and was like, Oops, rather than three week meltdown. So it's like, oh, you know, I mean, that's not a good thing. I wish I hadn't done it. And, you know, it wasn't the best thing in the world to happen. No one was hurt. It was all good, but, you know, at the same time, it's a kind of a normal life thing that can happen. It does happen to people. You get a flat tire, or, you know, car problems are a nightmare, but it happens to everybody. So again, it's that kind of normal stuff, isn't it? Normal stuff that happens to everybody. And just doing it in a way that is, quote, unquote normal, whatever that even means.
Dan Neuffer
I've wrote an article, it's probably still on my website, like I did this, like maybe 10 years ago, and I realized I had this aha moment, you know, about my recovery, unrecovered. And it was, you know, we have a theme parks where I live. And we went to Sea World regularly with the kids when they're very little. And, you know, look at the fish and all of this. And I sat there for a moment just to eat something or whatever, once they were lined up, and a different thing and, and as I said to him, like I'm just sitting here, it's, it's not anything. But then I I realized that I'd sat in that bench many times when I was sick, and the amount of suffering I had on that bench, where it was like, just sitting around a bench was like, even doing nothing was too much. And sitting on that bench and just going, how am I going to get off this bench, and when will this suffering end? And like, the whole thing was like such a nightmare, and I suddenly realized just how much I'd suffered when I was ill. You don't really know until you get well, and then you get a perspective whilst you're in it, you're just trying to keep the wheels on the bus. And I think this is why people have this shopping experience, because they they just suddenly realized just how tough it was.
Jackie Baxter
Yes, exactly. And you're looking back on that and thinking, Gosh, that was awful. And I suppose it makes you more grateful if that's the right word for your health when you have it back. Yes And yeah, I suppose putting that back into a context that's sort of useful for people who who aren't at that moment yet, you know, I suppose it's, it's believing the right word, you know, but believing that you can get there. But also, you know, focusing on those little things at whatever point you're at, because little things are important, I think. And always
Dan Neuffer
say, you know, some people say I can't believe it. I'm like, that's fine. I couldn't believe it. I didn't even believe it after I recovered, right? So I was recovered, and didn't think I could get well, which just makes no sense, because obviously I'm already well. I was, like, literally having a thought whilst running, you know? But like, I say, Well, you know what? Forget about belief and. Faith. Faith is great. Hope is nice, but confidence is really working out, and confidence is built on experience proof. So seek proof. You get from 20 to 40% is that imagined? Is that up and down, or is that something that really happened? Let's take stock. That's why I make people do a questionnaire every month. What can they do? How can they walk? How can they cook? What's their pain? What's their dizziness, all of these things. And then look at it. Okay? Maybe this is that not true. Maybe the glass is suddenly half full instead of half empty. Is that it? Well, let's see what happens next. Month, sooner or later, comes a point where they go, now this is really happening, and they go, Okay, now you gotta latch onto that. That's confidence, that's belief, yeah, but I still don't believe. How be foolable. That's fine, but can you believe it can be 5% better maybe? Alright, let's just do that. You know, whatever, there is an obstacle. You just have to find a way around it. Yeah? And when you get there, this is the biggest achievement of your life. This is the most amazing achievement, I believe, recovering. And yet, even though it's such an amazing achievement, I still believe everyone can do it. And the part of that is seeing people who shouldn't be able to recover. I've seen them recover, and that's really what's changed my mind. I've been very privileged to speak to the most amazing human beings I could ever have imagined. And it's always a very strange experience for me, because they sometimes they know me for a long time, or, you know, I'm like a micro celebrity, and they get a bit, you know, starstruck, or something like this. And I'm the one who's really the starstruck, because they're the rock stars. You know what? I mean, like, they're the ones who've done these amazing things. People have a lot more power and a lot more strength than they realize. And let's find out.
Jackie Baxter
Well, I think that's probably a really nice place to leave it. So thank you so much, Dan for sharing your experience and your wisdom and your time, and it's been my pleasure. So thank you so much. And yeah, I hope it's been useful for people listening.
Dan Neuffer
Yeah, thank you so much, Jackie. I really appreciate your perspective. And, yeah, it was a deeper conversation, you know. And I think the more I do this, the more I lean this way and appreciate your focus on balance.
Transcribed by https://otter.ai