193 - You are the Pilot, Not the Passenger - Reclaim Agency on your Recovery Journey

In this gentle solo episode, I invite you to explore a powerful reframe: what if your recovery journey isn’t something happening to you, but something you’re quietly guiding? Through metaphors, practical support & ideas, and  reflections, I explore how to reclaim agency in healing — even when the skies feel foggy.

You’ll learn how to:

• Shift from passive to intentional with micro-agency and sensory grounding
• Reframe inner narratives with soft, empowering language
• Use breath and boundaries as navigation tools
• Gently return to your pilot seat when setbacks arise

Whether you’re navigating Long Covid, ME/CFS, or simply seeking a more compassionate way to relate to your body, this episode offers hope, validation, and a reminder: you are not alone in the cockpit.

Links: 

James Nestor - "Breath"

54321 - A Grounding Practise

Episode 180 - Jules Rogers: The Art of Saying No

Work with me

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

(music credit - Brock Hewitt, Rule of Life)

Chapters

• 1:51 Opening & Why Reflect Now
• 3:01 The Worst Crash and Lost Hope
• 5:44 Tools, Gentleness, and Climbing Out
• 6:53 Confidence Shaken, Slow Return
• 8:13 Career Break and Stress Relief
• 10:11 Recovery Arrives—And Then What?
• 12:09 Jaxter 2.0: New Limits, New Self
• 13:58 Training Like an Unfit Healthy Person
• 17:03 Learning Balance and Emotional Healing
• 19:09 The Urge to Do Everything vs. Pause
• 21:07 Choosing Rest and Future Plans
• 23:06 Six Months On: Grounding and Gratitude
• 24:50 Anxiety, Boundaries, and Imperfection
• 26:10 Building ‘Breathing for Long Covid’
• 28:07 Turning Pain into Service

Transcript

SPEAKER_00: 0:56

Hello and welcome to this episode of the Long COVID podcast. As we come to this time of year, uh it becomes a time of reflection for me anyway. So today I am treating you to my 2023 reflections. What have I learned, discovered, noticed this year? Something of a dramatic year for me in many ways. I mean, to say it's been a bit of a year would be a bit of an understatement, that's for sure. I'm not going to give a blow-by-blow account of my recovery itself because I've spoken in depth about that before. So if you've not already heard it and would like to, then check out episode 94, which I'll drop a link to in the show notes. So a year ago, when I was writing my 2022 reflections, I was coming out of what turned out to be my worst crash, certainly in the latter part of my recovery, possibly of the whole experience. It certainly felt awful because until that point I had been starting to feel like I'd been making real progress and was starting to believe that maybe this was the time that it was actually happening. And that's a scary thing to think, because all too many times before the rug had been pulled out from under me. And of course, this occasion was no different. So a year ago I was feeling horribly frustrated. But looking back over the last year, something that one of my wonderful guests said to me springs to mind, and that was the wonderful Johanna in her recovery story. And I've mentioned this several times to people, and I think it's important to say, and unfortunately, it was something that she said off-air after we'd finished recording. Um, so I want to credit Johanna for this. Um, and she was talking about how she'd heard plenty of people say that the worst crash can sometimes come at kind of like 95%, or you know, when you're nearly there, kind of thing. And in hindsight, I don't think I was anywhere near 95% a year ago, but I thought I had seen significant improvement, that things were heading in the right direction, and that I really was well on my way. Recovery was happening. Then I crashed. So hard. Again, with the benefit of hindsight, there were plenty of factors that led to this out with my control, but at the time I just felt the worst I'd felt in so long, both physically and mentally. And I think the mental pain, the loss of that hope, the return of that feeling of hopelessness, the numbness, the complete shutdown, that was worse than the physical symptoms in some way. So suffice to say, it wasn't a good time. So how did I get from there to here? Well, I got through the worst of that crash. I gave my body what it needed. I remembered that I'd learned a lot, I had a lot of tools, I knew a lot more now, and that I actually wasn't back to square one, nowhere near, even though it had totally felt like that initially. I mean I wasn't perfect, but I was much better at just letting my body do what it needed or wanted to do. And as I came out of it, being more gentle with everything. So over Christmas I started to feel much more like I had before the big crash. Physically, I was back to doing better. Mentally and emotionally, I was struggling though. I'd lost a lot of that confidence that I'd been starting to build up before the crash, and it took me months to get that back. And some of that trauma is still with me today. During January, I started to feel stronger. I was doing more, but again, struggling with confidence in my body. After all, it had let me down last time, I'd started to trust it. But gradually, slowly, nonlinearly, I started to get it back. And then at the end of January, my career break from work got approved. And this would allow me some time to really focus on me. I think the stress of not working, being on sick pay, feeling useless, feeling unproductive, having to send in sick notes, occupational health stuff, etc., and then coming to the end of sick pay was causing me more stress than I realised. In fact, I didn't realise how much stress it was causing me until I didn't have it anymore. And I know that all of those things are there for my benefit, but it was just a lot of stuff to handle. And the career break really allowed me to focus on what I could do, which was more and more every day, rather than what I couldn't. So when it got approved, I literally felt this weight lifting off my shoulders in a way that I hadn't realized was even possible. And then recovery happened. I mean, it didn't just happen, but that's part of a longer story told elsewhere. But I think what I've spent a lot of time reflecting on recently is the post-recovery, or coming out of recovery into what life looks like now, because that was a lot weirder and more difficult than I'd expected. I felt more at sea than I could possibly imagined. It was like, you know, coming out of this prison of illness out into this world that I wasn't really sure how to exist in. And I had spent over three years imagining that recovery was the end game. It was the goal. I mean, and don't get me wrong, it was. It was absolutely what I wanted, and I'm so incredibly grateful that I got what I wanted. I also know that I worked hard for it. It was painful in so many ways, but that I've come out stronger. But it was also like recovery wasn't the end of the road as I'd thought it would be. Recovery was actually the start of another journey. The journey of who Jaxter 2.0 is, because I now have the opportunity to find out. So initially I was thinking, oh great, awesome, I'm recovered. I can do what I want, I can do all the things, and I could. In some ways the possibilities seemed endless. I felt like I could do anything. But at the same time, I was terrified of doing too much. What was too much now? Everything had changed. Limits were different. In some ways I didn't have limits, but of course I did, because everyone does. And looking back to my pre-COVID life, I was all too aware of how often I had exceeded those limits, to the point where my body had been so on the edge that it had practically imploded with that initial COVID infection. But gently, and sometimes not so gently, I pushed those edges. I played with those boundaries. I had to learn to think like an unfit, healthy person, which was not something I had ever done before. So I had to approach exercise and fitness like someone who couldn't run 5K, because I couldn't. So I went out on these frustrating runs where I would run for 30 seconds and then walk for a minute over and over. But fitness built up. It felt frustratingly slow, but it happened quicker than I realized at the time, because as soon as I was able to do a bit more, I was then pushing at those limits again. So I never actually realized how much fitter I was getting until I looked back over several months. So I was back in the hills, smaller walks, then becoming longer walks, gradually increasing, but remembering to listen to my body. There were times where we were thinking of going out, and I just said, nah, not today. Body says no. It's been a busy week. Maybe I'll just do something gentle or I'll go for a swim, which was not something I would have ever done before. It would have been no, we do this thing, giving in as a sign of weakness. I remember Laurie Rivers describing chronic illness like having to learn your new body, and she's absolutely right, but I think recovery is the same thing, kind of in reverse. It's like learning your new new body all over again. Because new me and a different me. A better me, for sure, but definitely a different me. And a me that has boundaries. I say no to things now, not as often as I maybe should, but it's a start. I'm better at putting me first when it matters, saying what I think, and caring less about pleasing others, which is all still work in progress for sure. But like, not that there weren't hiccups along the way. There were definitely moments where I felt tired and started panicking that maybe I'd got it all wrong. I'd done too much and long COVID had come back. It was amazing how quickly my brain would go back into that illness mindset. But I think that was my greatest fear was ending up back sick again. But over time I started to get more used to the fact that sometimes when you did things you got tired, and this wasn't fatigue, and I knew the difference now. This was genuine tiredness because I'd walked a long way, or I hadn't slept well, or I'd had a super busy week, or I was in the second half of my cycle, because all of these things cause people to be tired. Regular people get tired, and I needed to respect my body when I was tired rather than pushing through, like old me would do. And as time went on, I stopped thinking about long COVID. I mean, I didn't, but I was much more clear that it was a part of my past, an obstacle I'd overcome. I didn't want to forget it, but I definitely wanted to move on from it, you know, to heal emotionally from it as well as physically. And I think that emotional healing took longer, is still ongoing in a lot of ways. And I was finally learning this concept of balance in my life, that it was fine to be crazy busy and to do lots of exercise, and for my brain to be what my partner affectionately calls braining, where it's firing out idea after idea and planning 20 different plans and running in circles. But what also that I needed to balance this out with not doing all of those things, and that if my brain had a tendency to brain a lot, I needed to have ways of turning that off too. And luckily I had learned such strategies during my illness because I sure as hell didn't know them beforehand. So when I announced my recovery, I was all ready to dive straight into all the things. I felt like I was overdue on living life, and I felt a need to be productive. What was I going to do for work? I needed to work all of this out now. And I very clearly remember a session with my absolutely fantastic therapist around about this time. I was flapping about and my brain was running at a million miles an hour, and I had plans and plans and plans. I think she was exhausted just listening to me, and she gently suggested that maybe I didn't need to rush into anything or solve all the world's problems all at once. And this was like a total revelation for me. I mean, she was absolutely right, of course. She generally is, but don't tell her I said that. So I took some actual time off. I mean, I wasn't doing nothing, I was still recording the podcast, I got my breathwork certification, and I was having lots of thoughts, but rather than diving straight into them, they went on a list for later future plans. In fact, it was mid-September before I really started doing stuff work-wise, and I was really grateful for giving myself that time to just enjoy being me and working out a bit more of who me was now. So, what does life look like now? Six months on from recovery. Well, I spend a lot of time sitting on the floor. It turns out that this is my happy place, and it really helps me to feel grounded. It might be a bit awkward at Christmas dinner, but maybe I'll relent and use a chair. But I feel fantastic. I feel so grateful to have my health back. I love doing stupid little things that I took for granted before, and I feel a lot more present in my own life. I think I connect more with what I'm doing. I'm much more aware of stress. Of course, I've not eradicated stress from my life. I don't think that's possible for anyone, but I am aware of it when it arises, and I'm better at managing it. The same with anxiety. Anxiety was present in my life before I was sick. I now realize. I just refuse to acknowledge it. Now I notice it and try to give it space. I'm not always perfect at it, but no one is. Perfect is a word I'm trying to get away from, and so is the word should. I am trying to be better at giving myself space when I need it, taking time off, working less, again, balance in my life. And I do appreciate the irony of this having just started a new business. There's a lot of setup and work to do, but I'm genuinely loving doing it. Working with Vicky at Breathing for Long Covid is just such a joy. I've never worked with someone who thinks and works so similarly to me, but also has beautifully complementary skills. I feel like Vicky and I are so in sync. We once emailed each other the same link at the same time to an article that we just found, and we haven't actually ever met in person. I was so keen to use my experiences of long COVID, the hellish three plus years, to make something positive out of it. In some ways, I feel like I've lost three years of my life, that they're gone and wasted. And although I know logically that that's not true in some ways, and actually a very kind and lovely person sent me a message recently to remind me how much I'd helped them. I feel like I wanted to use it to create something positive. Which is why the podcast will absolutely continue. I have no plans to stop. The connections I've made, the things I've learned from those I've spoken to, the new skills that I've gained have been incredible. It's made me rethink so many things about my life, about what I can do, and about what I want to do. But also that's why I've started breathing for long COVID with Vicky. The power of the breath is just so incredible. And the more I learn about it, the more it blows my mind. I've experienced the amazing results from it, and I want to help others who are still struggling. I think when you're struggling with something like long COVID, you need to work with someone who understands the illness and is able to tailor the exercises to the person and to the illness and to the day. Vicky and I have that ability, and the course we've designed is already helping people. I've just finished up my final class of this cohort last night, and I honestly felt quite emotional. It was such a special moment. The connections I've made with the group members, the improvements they've seen through the course, and maybe more importantly the tools that they've learned that they will take forward in their recoveries. So without wanting to sound too much like a sales pitch, if you're interested in joining us, there is a link in the show notes for more information and to sign up for our next cohort of classes in January or March. In terms of fitness, I'm not back to my pre-COVID levels yet, but I'll get there. And I'm now at a point where I don't even think about doing too much. I just listen to my body. Does it want to do things today? Yes or no? What do we want to do? Do we want to do that? Do we want to do a bit less? Do we want to do a bit more? I have faith my body will handle what I throw at it or what the world throws at it because I'm stronger and more resilient, and I have learned the tools to deal with whatever happens next, because there is no certainty, right? Two weekends ago, I did possibly my biggest walk since illness in the most difficult snow conditions, and we camped out in minus 15. It felt out of this world incredible. I could barely believe it. And then this most recent weekend, it was wet and windy, and I barely left the house. I think maybe my life is finally starting to find that balance. But you know, I'm not perfect, and I never will be. And I think what is so beautiful about us is that we are all flawed. I know I certainly am. But I think what is most important is to be happy, and I think I always thought I was before, and maybe I wasn't unhappy, but I was just dashing around so busy, so stressed all the time that I never really had time to think about it. And now I have this opportunity to rebuild life in a way that I want it, so that's definitely something. But my glass is always half full rather than half empty, and I'm gonna be grateful for what I have now and move forward and enjoy that. So if you're listening and you are unwell, if you're struggling physically, mentally, or both, you are not alone. Find those meaningful connections, the ones that help rather than hinder. Keep doing those things that help you. Search for more things that help, and believe that things will get better. They did for me, and I truly believe that they will for you too. I didn't need to rush into anything or solve all the world's problems all at once, and this was like a total revelation for me. I mean, she was absolutely right, of course. She generally is, but don't tell her I said that. So I took some actual time off. I mean, I wasn't doing nothing, I was still recording the podcast, I got my breathwork certification, and I was having lots of thoughts, but rather than diving straight into them, they went on a list for later future plans. In fact, it was mid-September before I really started doing stuff work-wise, and I was really grateful for giving myself that time to just enjoy being me and working out a bit more of who me was now. So, what does life look like now? Six months on from recovery. Well, I spend a lot of time sitting on the floor. It turns out that this is my happy place, and it really helps me to feel grounded. It might be a bit awkward at Christmas dinner, but maybe I'll relent and use a chair. But I feel fantastic. I feel so grateful to have my health back. I love doing stupid little things that I took for granted before, and I feel a lot more present in my own life. I think I connect more with what I'm doing. I'm much more aware of stress. Of course, I've not eradicated stress from my life. I don't think that's possible for anyone, but I am aware of it when it arises, and I'm better at managing it. The same with anxiety. Anxiety was present in my life before I was sick. I now realize. I just refuse to acknowledge it. Now I notice it and try to give it space. I'm not always perfect at it, but no one is. Perfect is a word I'm trying to get away from, and so is the word should. I am trying to be better at giving myself space when I need it, taking time off, working less, again, balance in my life. And I do appreciate the irony of this having just started a new business. There's a lot of setup and work to do, but I'm genuinely loving doing it. Working with Vicky at Breathing for Long Covid is just such a joy. I've never worked with someone who thinks and works so similarly to me, but also has beautifully complementary skills. I feel like Vicky and I are so in sync. We once emailed each other the same link at the same time to an article that we just found, and we haven't actually ever met in person. I was so keen to use my experiences of long COVID, the hellish three plus years, to make something positive out of it. In some ways, I feel like I've lost three years of my life, that they're gone and wasted. And although I know logically that that's not true in some ways, and actually a very kind and lovely person sent me a message recently to remind me how much I'd helped them. I feel like I wanted to use it to create something positive. Which is why the podcast will absolutely continue. I have no plans to stop. The connections I've made, the things I've learned from those I've spoken to, the new skills that I've gained have been incredible. It's made me rethink so many things about my life, about what I can do, and about what I want to do. But also that's why I've started breathing for long COVID with Vicky. The power of the breath is just so incredible. And the more I learn about it, the more it blows my mind. I've experienced the amazing results from it, and I want to help others who are still struggling. I think when you're struggling with something like long COVID, you need to work with someone who understands the illness and is able to tailor the exercises to the person and to the illness and to the day. Vicky and I have that ability, and the course we've designed is already helping people. I've just finished up my final class of this cohort last night, and I honestly felt quite emotional. It was such a special moment. The connections I've made with the group members, the improvements they've seen through the course, and maybe more importantly the tools that they've learned that they will take forward in their recoveries. So without wanting to sound too much like a sales pitch, if you're interested in joining us, there is a link in the show notes for more information and to sign up for our next cohort of classes in January or March. In terms of fitness, I'm not back to my pre-COVID levels yet, but I'll get there. And I'm now at a point where I don't even think about doing too much. I just listen to my body. Does it want to do things today? Yes or no? What do we want to do? Do we want to do that? Do we want to do a bit less? Do we want to do a bit more? I have faith my body will handle what I throw at it or what the world throws at it because I'm stronger and more resilient, and I have learned the tools to deal with whatever happens next because there is no certainty, right? Two weekends ago, I did possibly my