78 - Dr Lucy Gahan - Long Covid, Psychology, Loss & Activism

Episode 78 of the Long Covid Podcast is a chat with Dr Lucy Gahan, Long-hauler, Clinical Psychologist and a published author! We discuss what she has learned from her experiences and how this led her to write her book "Breaking Free from Long Covid - reclaiming life and the things that matter" - I think the title speaks for itself!

Lucy's book "Breaking Free from Long Covid"

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

(music credit - Brock Hewitt, Rule of Life)

Transcript

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Jackie Baxter  
Hello, and welcome to this episode of the long COVID Podcast. I am delighted to welcome my guest today Dr. Lucy Gahan, who is as well as having long COVID is a clinical psychologist, and now a published author as well. So welcome to the podcast. 

Dr Lucy Gahan  
Thank you. 

Jackie Baxter  
It's lovely to actually be speaking to you, because we've been in touch for quite a while. So it's really cool to finally actually be having this conversation. 

Dr Lucy Gahan  
Yeah, it's great to be here. Very exciting. Yeah. 

Jackie Baxter  
So to start with, would you mind just maybe giving just a little bit of introduction to yourself and what it is that you do?

Dr Lucy Gahan  
I always find it really hard to give a short introduction, I start to get carried away started talking about long COVID. But yeah, so I've Lucy Gahan, I suppose I am a clinical psychologist, but I feel like I should talk about I'm a person with long COVID first. So I work in the NHS, as a clinical psychologist in a long COVID service, which I've been doing for the last around six months. Before that I was working in a physical health service in palliative care. And that had to stop that from when I got long COVID. And I was off work for 19 months, and then had to come back to work and saw the job in long COVID, and thought you know, that's, that's where I belong for now. So, here I am.

Jackie Baxter  
Yeah, that's wonderful that you have, obviously been through this experience, and they're still going through this experience. But you are using your kind of knowledge of your experience plus your actual training knowledge, as well, you know, to help people because you understand how they're feeling, I guess. 

Dr Lucy Gahan  
Yes, yeah. 

Jackie Baxter  
And when did you get sick?

Dr Lucy Gahan  
So I, I had the COVID infection in April 2020. So it was a couple of weeks after lockdown started, I think. So I tend to call it like a moderate illness when I talk about it. I don't want to downplay how horrible it was, you know, it was a horrible couple of weeks, I had the really struggling to breathe was one of the awful symptoms. So me and my partner had it at the same time, we had the children at home because it was lockdown. So it was a horrible couple of weeks. But it seemed like I was recovering after it. So we started to go on walks again. And then one day, probably a couple of weeks later, I was standing in the kitchen. And I suddenly realized that if I didn't sit down, I'd probably pass out. And that was kind of the beginning of - its when life changed, I suppose yeah. 

And then from there, I went into this kind of Cascade as we all know how it is horrible frightening symptoms. So but one of the most striking ones was the inability to stand up. And that just seemed to get worse. So my heart rate would go really high, I ended up just barely able to get out of bed, really. So I remember trying to crawl to the bathroom, you know, that just feeling so ill, and not knowing what had hit me really. 

And for those months, I have sort of particular memories of particularly frightening times, which I won't I won't go into. But you know, things like horrible heart symptoms, really strange beats and heart rhythms, which would come and go. And then a kind of, it's really hard to summarize, isn't it, a long COVID illness story, because it's so all over the place and mixed up. But some time in a few months later, when I started to get, like it was getting a bit better, suddenly my oxygen levels seem to just drop whenever I was upright. And that was really frightening as well. So months and months of this, you know, all over the place-ness 

Jackie Baxter  
Yeah, I don't know if you find the same, but you just said that It was frightening. And I think that it really was. And I certainly find like, I have a lot of kind of like trauma from that whole the whole period. But I think especially kind of early on, when I was you know, really quite unwell. But I think in some ways, it's quite hard to kind of really remember it in some ways. I sort of find, you know, I'm doing quite a lot better now, which is wonderful. And I think sometimes we kind of downplay it a little bit, you know, we just say, Oh, I've been ill for a long time, and it sucks. When actually, you know, remembering back to some of those moments. It was utterly, utterly terrifying. You know, lying in bed with your heart rate going crazy. And you know, just thinking that you might actually not survive.

Dr Lucy Gahan  
Yeah, and I think when we talk about trauma, it's - before long COVID I thought about trauma as one thing because it happens to you, and it is one thing that happens to you. But it's with long COVID. It's something that happens to you over and over and over again. I feel like when long COVID happened to me it opened a door of a world that I didn't know existed. And sometimes I feel that I'm in that world, and only people in that world can really understand it. And however much I try and tell somebody else, who tries to understand that he can't really. 

So not long ago, I was talking to my partner about it and he said, Oh, do you think that was quite traumatic that time when we were really ill, and we thought we might not wake up? And I was sort of taken aback. And I suddenly thought, that didn't last a night or week - that lasted months, there was months of thinking I might not wake up, and it hasn't entirely gone away now. And I remember when I first got asked questions by the long COVID service, I kept getting asked if I was depressed, or you know, the usual questions you get asked, and I would say, No, I'm not depressed. I'm ridiculously grateful to be alive, that I'm so far from depressed. 

But I think now look, having a bit more distance, I realized that actually, that was so traumatic over and over and over again. And every so often, that hits me, because I heard a children's program theme tune that I used to put this program on when I couldn't get off the sofa for my children, and they'd watch this program all day. And I heard this theme tune. I hadn't heard it since 2020. And I was just stopped in my tracks. And I felt quite sick. And I thought I can't, can't listen to that. And that reminded me of how traumatizing these experiences are. And like you say, it's easy to kind of downplay it a bit, I suppose. And yeah, just say, oh, yeah, it's really horrible. And but yeah, it's, it's frightening.

Jackie Baxter  
And I guess that kind of leads into how it's very difficult for someone to understand if they haven't actually been through it. And I think partly, it's because it's very difficult for someone who hasn't actually experienced to even imagine it, unless they've had a comparable experience. And I think many people haven't, you know, I think that's a big part of it. But I think as well, it's very difficult to explain it in a way that someone will understand. And also, it's traumatic for us to relive it. So you know, why would I want to tell somebody about all of those nights where I went to sleep thinking I wasn't going to wake up? You know, it's like, you don't really want to relive it

Dr Lucy Gahan  
No, absolutely. Yeah.

Jackie Baxter  
I mean, what inspired you to write the book? Because I mean, like, I don't know, when you started writing it, but you must have been quite unwell at the time. And I'm thinking, I don't know how anyone could actually have kind of sat down and produced something like that. But it must have been quite important to you?

Dr Lucy Gahan  
Yeah, I don't know either. I was thinking about that actually, the other day, and I was, I remember sitting in bed, and it must have been a few months down the line. And as we all know, this, the symptoms quite often come in waves. And so between those waves, if you like, I would be able to somehow get dressed. And I'd go out with my partner, and we'd drive into the countryside if we could, we'd go to the stream, so the boys could run around, and I could just sit still and watch them. 

And I remember I'd just come across Noah Greenspan, from the pulmonary Wellness Foundation in New York. And he was he was doing all these videos about, you know, these effects of COVID. And he did this video about dysautonomia symptoms. And it just stopped me in my tracks. And it was like a moment of like, Ah he's describing exactly what I'm going through. There's words for it, there's, this is a real thing, I'm not imagining it. And it was such a moment. And it was it was kind of like the lights going on moment of oh, so that means there's something that I can do, then, if I've got an explanation for it, there's something I can do. And so and he was doing these sort of breathing exercises, and so that gave me this kind of - it gave me something to do, some way of acting on things and that was so powerful, being able to take some kind of action. 

So then I started connecting with other people. So in Facebook groups, long haul COVID Fighters Facebook group and then I was kind of connecting with other people, learning tricks and things and learning little things that were making even tiny differences to people. And at the same time, what kept coming back to me as I was sitting in bed was some of the things that I was using in my work with people who are ill, and some of the ideas for narrative therapy. And because they were helping me, I thought, well, what do I do with them, I've got to do something with them, I can't just sit and keep them to myself. 

So I started to just, I remember 100 days of COVID, I'd had 100 days of long COVID. And I wrote a few words. And then I just didn't really stop writing. I just wrote a few more words and a few more words. And then gradually, it looked like it had some themes. And there was a point where I thought, well, what what are you going to do with this? Are you going to do something with this? Or is it just gonna sit in your bedroom? And that was that really. So it kind of evolved as my health just slightly got a bit better, and a bit better. The book kind of evolved. And then yeah, I had a book, which amazed me as much as anyone else, really.

Jackie Baxter  
That's so lovely. It's like that you wrote a book almost kind of by accident

Dr Lucy Gahan  
By accident. 

Jackie Baxter  
It's wonderful. 

Dr Lucy Gahan  
Yeah, well, quite, quite ironically, I found - I think when I started to feel better, I started to look for things to distract myself. I'd bought a book called Write Every Day. And it was about doing a writing exercise every day, and I found it in my bookcase. I've not written a single word in this book. That was quite funny. But yeah, it was kind of by accident,

Jackie Baxter  
Was it kind of quite therapeutic writing it in some ways, kind of putting all these thoughts onto paper?

Dr Lucy Gahan  
I suppose it must have been. But I don't feel like I'm a natural writer, I find it quite frustrating. And I feel like I wrote it off the top of my head. So I meet other people who are creative writers, and they write really beautifully. And I can only write in the way that I speak. I just kind of wrote it off the top of my head. And that's it. I couldn't do it any other way. 

So perhaps it was therapeutic. But I think what it was more, was the being able to do something with this experience. So being able to take some action. And the idea that that action might be of any help or comfort to somebody else is hugely healing, isn't it, for yourself as well, the idea that, you know, I get some lovely emails, and it's just to be able to do something with such a horrible experience. That's therapeutic in itself.

Jackie Baxter  
Yeah, absolutely. And I think possibly, that's why it resonates so much with people. Because, you know, I was reading the book. And I was just kind of nodding the whole way through. And I was thinking, this is what I want to say. But you've managed to put it into slightly, you know, more sentences than I managed. So it was kind of like, I can see so much of myself and so much of what I feel, or so much of what I maybe didn't realize I felt about certain things until I heard the way that you had written about them. So I think maybe a lot of people do feel like that. And the fact that it has literally been the thoughts kind of straight out of your head onto paper, that maybe makes it so great.

Dr Lucy Gahan  
Yeah. And I think that I write in the book about the importance of being witnessed. And I think with long COVID - there's a quote in it from another author, I think it's called "the lady's Handbook of her mysterious illness" or something which I really enjoyed her writing. And she writes about how, when you've got a mysterious in inverted commas, illness, you're systematically unwitnessed. So you're - every time you're not believed or not acknowledged you're unwitnessed. So to have somebody witness your experience, it feels so important. And we can't always get that from people in our lives. Like you were saying before, people can't understand, really, unless they've had it. So I think just anything that resonates is so powerful, isn't it? Because it's so important to have that feeling acknowledged and witnessed.

Jackie Baxter  
Yeah. And I think on the flip side of that, if you are dismissed, or made to feel not believed, or not trusted, or, you know, in any way, you know, when the doctor says, Oh, well, that can't be right. And you say, well, Yes it is because that is literally what I'm feeling in my body. And if you're getting that kind of dismissal, or you know, disbelief, it does so much harm, doesn't it?

Dr Lucy Gahan  
Yeah. Yeah. I kind of see it as layers of - we're talking about trauma before - layers of trauma, or layers of difficulties. So you've got the symptoms themselves, and how horrible they are and how frightening, and then you've got the effects of those. So the losses that you experience - so perhaps loss of work, loss of relationships, loss of life as you imagined it unfolding. And then being not witnessed or dismissed is another layer that you have to deal with. And I talked about in the book as another injury. That is how significant it is when you're not believed.

Jackie Baxter  
Yeah, definitely. And you touched on kind of grief and loss there. And something that I have definitely noticed myself is this kind of, I think it's something that shouldn't happen, but it is for so many people, where our self worth is tied up with our productivity. So if we can't work, then we feel useless. So we kind of lose that self worth. But also, for me, I think so much of my identity was tied up with being active, being someone who exercised a lot, you know, I would spend all my free time in the mountains. And then suddenly I couldn't do that. So that tied in with the fact that I wasn't working, it was kind of like, I don't know who I am anymore. I don't feel like me, I don't have my identity. And it was kind of this kind of loss of "self" almost, that was awful.

Dr Lucy Gahan  
Yeah. And it's one of the things that I talk to people with long COVID in my work about a lot. And it's one of the themes that come up. And I talk a lot about a psychologist called Katie Weingarten in the book, because she writes about illness. Her writing about illness I just think is fantastic. But she talks about self loss. And I think that's such a huge part of long COVID. Because, like you say, so much of your identity is tied up in how you live your life, and what you can do, and what's important to you. And when you can't do those things. That's a huge loss. So yeah, the self loss. 

And the other thing we quite often talk about is chronic sorrow, sort of tied up with self loss, and that feeling of ongoing losses, and how deeply sad that can make you feel. And quite often it it may be labeled as depression, for example, and I was talking to one of my clients about, and I said the words "chronic sorrow", and she was just struck by those words. And she said, I thought I was depressed. But actually, that fits so much better for me, that idea of that chronic sorrow, because you know, that there's losses and that loss of identity and all of that it's, you know, it cuts deep, doesn't it?

Jackie Baxter  
Yeah, definitely. And again, I think it's something that you mentioned in the book is this importance of kind of language around chronic illness. And this is something that I've become much more aware of having been through this experience. And, you know, I said before, that I'm kind of embarrassed in some ways to have had so little awareness before I got ill. And suddenly, this whole thing happened, and I, you know, my eyes have been open to like, a whole different kind of world and the kind of injustice and unfairness of a lot of it, but also how some of the things that you would say before, you know, and you wouldn't even realize that you were saying something that might upset somebody who had been long term ill. And even like the question of "how are you doing," can have so much tied up in it, can't it?

Dr Lucy Gahan  
Yeah, absolutely. And I think language is so important. And one of my, I get quite animated, you could say, in some of the meetings that I go to, if the word "lingering" comes up, lingering effects of COVID - that really kind of gets me because I think, you know, I laugh about it, but language has effects. And if you describe - to me, describing lingering effects, says something about some kind of quite mild post viral effects that that will go away on their own, they're a bit of a nuisance kind of thing. And I just don't think it captures the the complete cascade of really frightening things that can happen to you. 

And the word lingering is used in the media all the time next to long COVID. And that has effects you know, it has effects on how the public see the risk, see what what people with long COVID are going through. It has effects on what funding maybe long COVID services are given, you know, if lingering effects go away on their own, why would we need services? So think language is so important.

Jackie Baxter  
Yeah, exactly. And kind of downplays, again the kind of, you know, effect that it has on people and you know, we know it affects different people in different ways, and different levels of severity and You know, things fluctuate over time. So, you know, looking at one person isn't necessarily representative of everybody. In fact, it definitely isn't representative of everybody, no matter what day you look at them on. 

But, you know, I think, you know, even someone with sort of a milder form of long COVID, it still affects every single aspect of your life doesn't it - affects your ability to work, it affects your ability to socialize, it affects your ability to exercise, your mental health, your physical health, you know, all of these things, it's affecting on some level, you know, whether it's a milder level or a more severe level. So, you know, I think it's that kind of like, everything is affected, that is quite hard for people to understand.

Dr Lucy Gahan  
Yeah, and even something that you may think is not a huge problem. So like the inability to exercise - for me, that's just such a loss. And I think it's for so many people. I don't think people without long COVID could really realize that. So there was, there was a time when I couldn't even look at someone running, like because I'd taken up running like a year before getting COVID. And I just felt such envy for that person running, just so easily running, how do they - I was like How do they do that? How do they stay upright, and get that feeling of joy in their bodies from exercising, rather than paying for it afterwards. And that exercise was, like you were saying about yourself and going into the mountains - that was such a part of my identity and who I saw myself to be, and losing that is so difficult.

Jackie Baxter  
Yeah, I definitely - I found myself having to like leave Facebook groups, because I could see everybody else, you know, going off the hills, and doing all of these things that I used to be able to do. And it was almost like, I could do a little bit, but I didn't want to do anything. Because even doing just a little bit reminded me of what I used to be able to do. And that brought on all of the kind of loss over that. And I think over time, I have been more and more grateful for the little that I can do, rather than kind of - I think it's this idea of focusing on what you can do rather than what you can't. 

But you know, maybe it's one of those things where you have to go through that. I don't know, it's like a stage of grief, maybe where are you - You know, you just can't even think about those things. And I mean, as you get slightly better as well, and maybe are able to do slightly more, you're able to kind of say, right, well, you know, I can see that people are climbing that mountain, and I can't do that. But what I can do is, you know, walk somewhere flat, and somewhere beautiful. And I have a lot more appreciation for that.

Dr Lucy Gahan  
And I think for me, like yoga became quite - and it feels like a bit of a cliche, I feel like a cliche, talking about it. But it became really, and has become, really important to me, because when people talk about exercise, we tend to think of, you know, walking, running, cardiovascular exercise. And what I found from very early on, when I could literally just lie on my mat, that was about it. Very, very gradually, I've managed to build up strength through a daily practice. So I work part time, I work three days a week, and the only way that I can get through the day is by stopping in the middle of the day, rolling out my yoga mat, and having 20 minutes of some kind of low key exercise. 

And it's only recently that I've labeled it exercise. And I realize I am exercising, I may not be running, but I'm actually getting stronger. And I didn't realize that that experience of rolling out my mat. And that space is for me for that 20 minutes, that is my space where I'm taking care of myself and doing something for myself. It's a psychological space as well as a physical space. And I've realized that exercise for me doesn't have to just mean running or walking. It's still a loss. I still miss it. But I am stronger and just getting a little bit stronger. Feels really powerful as well.

Jackie Baxter  
And I think, yeah, what you were saying about the yoga mat, and that being sort of your space. And I also have never done yoga before until I got ill, and it was something that I started doing and really struggled with to start with. And you know, as I have got slightly better I'm now able to do more. And I really have kind of discovered how wonderful it can be. And there's definitely something where I sort of think, right, well, why did this have to happen for me to realize that I needed to take better care of myself? 

Because before COVID, I would have considered myself completely fit and healthy. And, you know, in no way at risk of anything, you know, you feel kind of superhuman, don't you until something happens? And now looking back, you know, I think, well, you know, I was very fit, but I certainly wasn't as healthy as I would have liked to have thought I was. And I suppose it's kind of one of those like, hindsight 2020 things, isn't it? But it's kind of given me an opportunity, I think, to take a bit of care of myself as frustrating as it is that I have had to do it, you know?

Dr Lucy Gahan  
Yeah. And yeah, similarly, I was just always on the go, I never stopped. And I remember before getting COVID, there was quite a lot of floods around here. And I was always late, I was always like trying to get the children to school, and I'm trying to get to work and all the roads were closed, and I was really stressed. And that had to stop. And it's a shame that it took me long COVID to do that. But then I heard on another podcast, I heard someone say, I can't remember who was or when. But they said, Don't go back to a life that wasn't working for you before. 

So the first year and a half of long COVID was trying to get back to the life that I had before. And in many ways I still am, of course, of course, that's what we want. But it's made me realize that actually, I do only want to work part time, if that's at all possible for me financially, then that's a way of life that I want to lead. So perhaps I don't have to go back exactly to how I was before. Perhaps there's no going back anyway. So what else - it's made me really have to think about how I spend my time and how I live my life. Yeah, like you say, it's a shame it's taken long COVID to do that. But it's good to have that - that kind of learning, I suppose. Yeah.

Jackie Baxter  
Yeah, yeah, absolutely. I can totally resonate with everything that you've just said. And the book is subtitled "reclaiming life and the things that matter". And I like that, because I think experiences like this. I mean, I think every experience probably changes us. But you know, a big experience, like something like this, you know, that's been kind of traumatic, and, you know, all of the things that we've spoken about already, you know, how could you not come out of it unchanged? And this kind of idea where maybe the things that matter aren't the same things that matter that maybe we thought were the things that matter beforehand?

Dr Lucy Gahan  
Absolutely. Yeah. And when you're forced to make choices about how you spend every hour of the day, it really focuses your mind, isn't it? Because if I do that, that means I can't do that later on in the day. So you're forced with long COVID to make those choices. But yeah, absolutely. It changes you.

Jackie Baxter  
Yeah, definitely. Yeah, sort of slightly different kind of perspective on things. Or the things that you took for granted before - I certainly took my health for granted before.

Dr Lucy Gahan  
Yeah, absolutely. Yeah. But and also, I'm always felt quite an introvert and didn't say a lot. So, so writing a book, and then I find myself getting really worked up in meetings, you know, because I work in long COVID services. So I come into contact with lots of people saying things about long COVID. So you can imagine some of that's good. And some of that's not so good. So, and I find myself speaking out about things in ways that I couldn't have imagined having the bravery or the confidence to, but because I care about it, it's like, I can't not say something, you know. So that kind of, I suppose I'm fortunate enough to work in something that I'm passionate about. And I can't not say something when I feel it's right. So I feel like it's changed me in that way as well.

Jackie Baxter  
Yeah, it's almost like it's opened a sort of a slightly different door and allowed a different side of you out.

Dr Lucy Gahan  
Yeah, absolutely. And it feels like a real privilege to be able to work with something that you care so passionately about. And although I have to watch myself then because then I find myself doing work on not working days when I'm not supposed to be working. So

Jackie Baxter  
We fall back into those patterns from before don't we, so easily?

Dr Lucy Gahan  
Yeah. So easy to do

Jackie Baxter  
Yeah, I mean, I guess that is quite a positive thing, though, that you've been able to, yeah, take that experience that you've had and feel like you're doing something with it and something that is helping people.

Dr Lucy Gahan  
Yeah, and not everyone can do that, you know, that was really fortunate and lucky. And I do think that one of the biggest things for me is being able to take some action, like I was saying before, whatever that action is, because the experience of long COVID is throws you into a sense of being out of control. So anything that you can do, I feel like it's really important having some agency and being able to take action. 

And, you know, for me, that happens to be in my work, which I feel really fortunate about. But that can be anything really can't it? And I think being able to do anything that makes a difference. So I think I said in the book, like very early on, I said something in a Facebook group that somebody seemed to find useful. So I wasn't just taking, I wasn't just taking stuff from other people, I was still able to give something even though I was so ill. And that feeling of not being useless, I still have a role, I still have something to offer - is really important.

Jackie Baxter  
Yeah, it absolutely is. And this feeling of having some control as well, I mean, I think I felt kind of similar, where - I interviewed someone quite recently who described, I think, kind of everybody, you know, doctors, researchers, patients alike, as kind of feeling like we're flailing. And I was like, Oh, my goodness, that is exactly the word that I felt to start with. I was flailing I had no idea what to do. I didn't know what was going on with my body. It was terrifying. As we said before, you know, I had no control over anything. 

And then, you know, you start to find some things that help, which leads you on to some other things that help. And yet again, you manage in your book to put it into words, you said you made recovery your project. And, you know, I think for me, that's what that has been as well, because it's been - right, well, what is the most important thing right now? It is my health. So what am I going to do, I'm going to do everything that I can. And, you know, it turned out that some of the things I did actually weren't helpful. And some of the things I did make things worse, but you know, I was doing them because I thought, I'm going to try this.

Dr Lucy Gahan  
Yeah. And that's when I talk, I talk about a toolkit. And again, that feels a bit of a cliche that sort of just popped into my head. But it felt like it was there for a reason, because like you say some things don't work. And so you can disregard those. But gradually, over time, you find some things that do help you a little bit. And over time, then you've got a few things that you can draw on. 

So before we started recording, I was saying about like going in half term to London, and that was a huge deal for me, because it felt like a really frightening thing to do, because I knew how easy it would be to walk too far. And of course, I did walk too far. And I ended up sort of sitting on the floor of the LEGO Shop, my heart rate really high. And I remember the moment thinking, Okay, what you know, some things here. You know what to do, just breathe and it will be okay. Just slow your breathing down. It'll be okay. But I don't think I would have been able to do that early on. And it's still really hard sometimes, isn't it to think - I do know some things that are gonna help me. But I just have to remember what they are.

Jackie Baxter  
Yeah. And it's so easy to sort of fall into that out of control feeling, isn't it? You know, you've symptoms start up and you just - I mean, I just go into panic mode and thinking, Oh, my goodness, I feel breathless. It's happening again, I'm having a relapse, everything's going wrong. I thought things were getting better - what's going on? This isn't fair! And all of that things. And it can spiral really quickly. 

And I think once I realized that, yes, I did have things that I could do. So you know, if I started feeling breathless, then it was first and foremost a sign that I needed to stop whatever I was doing right away before things got worse. And I needed to start kind of deploying some of those kinds of things that I knew. So whether it was deep breathing, whether it was laying down with my headphones and my yoga nidra or whether it was getting into some freezing cold water or, you know, whatever it was that there was something that I could do. 

And if I kind of did it at the right time, hopefully it might stop things in its tracks - and it didn't always work. But as I got better at kind of managing things it did then, you know get slightly easier to not go straight into that panic mode and start you know, to think right, okay, I'm not going to start panicking. I have things I can do. 

Dr Lucy Gahan  
Yeah, absolutely. Just realizing quite early on that, that people might give you advice and people might say oh, it'll be good for you or don't do that, or do that. And actually being able to stop and say - how do I feel in my body at this moment? And only you can know that really. And I think in, in our, the way we live our lives. Now, it's just so demanding. There's so many demands. There's like my children go to two different schools. So I get constant, like emails and WhatsApp messages and requests to remember things. And there's so much demand. And sometimes those things have to go. Something has to go sometimes. And that it's not easy is it? It's a skill that you have to keep practicing to work out what to let go of. 

Jackie Baxter  
yeah, this idea that like before, you would just do everything, because that's what you did. You're taking your kids to school and you're exercising, and you're doing all the housework and you're also working full time and you know, all of these things,

Dr Lucy Gahan  
and your body just went along with you - didn't even think about it. 

Jackie Baxter  
Yeah, I mean, "listen to your body" is something that people say all the time. And again, I think when I first heard it, I was just like, oh, that sounds a bit wishy washy, and it has now become one of the most important things. Especially I feel like one of the traps is when you start feeling slightly better. And you think, oh, a good day, excellent. I'll do all the things. But actually, that's the worst thing you can do, isn't it. But you know, really listening to your body, you know - is today a day where I could do some things, or is today actually a day where I need to rest? And both of those things are okay. But only you will know what your body is telling you. But also, we have to take the time to listen, which I'm not so good at, and have never been good at.

Dr Lucy Gahan  
Yeah. And I think that's why the yoga mat space became so important to me, because it's not just the yoga, it's creating that little space to like, Oh, I didn't realize I was feeling that kind of post exertional. You know, I'm feeling a bit like that today. But I was rushing around. So I didn't realize, I think creating those spaces, little islands in your day, are quite important.

Jackie Baxter  
And I think they're the sort of things that are probably important - or should be important - to everybody, whether you're healthy, or whether you are ill or you know, whatever your circumstances. But I think when you're well and firing all those cylinders, you don't feel the need to. It's like like, oh, well, that's not a thing I need to do.

Dr Lucy Gahan  
Yeah, you're like you say when you're living in a healthy body, it goes along with you. But when you have a chronic illness, like long COVID. There's a quote that says something like - you're continually switching between your the outer world and an inner world. So what your body's doing, and what the outer world requires of you. And that kind of switching and noticing takes energy, it's part of the capacity that you've got, but something that is invisible when you're living in a healthy body, that kind of switching between the inner and the outer worlds.

Jackie Baxter  
Yeah, completely. And just the different things that require energy as well. I think before I would have been like, oh, well, you know, physical activity, that's energy, sitting reading a book, that's not energy that's relaxing, and then suddenly realizing that oh, okay, so books, emails, listening to music, all of these things, they're energy too. Arguments with your partner, they're energy as well, you know, it's that kind of emotional energy that I didn't realize was a thing. And actually, that rest was completely different to what we would call downtime now, but learning that was like a whole kind of light bulb moment in itself.

Dr Lucy Gahan  
Yeah, I did find myself say to my partner, where we were having an argument, you're using up my oxygen. I'm not wasting my oxygen on this. So that was a moment.

Jackie Baxter  
I love that. That's amazing. Don't waste my spoons.

Dr Lucy Gahan  
But yeah, totally. Like I was saying about walking too far last week, but kind of feeling not too awful afterwards, still some effects. And then coming back to work. I set myself a really quiet workday and was exhausted by the end of it. And I just been sitting at the kitchen table. Like, well, how does that work? No, no, you know how that works. Remember? No, but it's always a surprise. Somehow

Jackie Baxter  
yeah, we have to keep learning the same lessons over and over again, don't we somehow? 

Dr Lucy Gahan  
Yeah, we really do. 

Jackie Baxter  
What advice might you have for yourself kind of almost three years ago, starting down your kind of journey?

Dr Lucy Gahan  
I think the biggest differences for me have been finding witnesses. So having a witness, and that's not always easy to find. And I think for me, you know, I'm someone that - I feel very grateful - I've got lovely friends and great family. But I still felt most witnessed by people with long COVID, whether that was in the Facebook group or I find myself going to a children's party and bumping into a couple of other women with long COVID. And it's like we've known each other for years, like you're chatting in the corner and like this kind of instant recognition, I suppose. So finding witnesses can be so powerful. I think it's really important. 

And finding anything that gives you a sense of being able to take some action, and some agency like we were talking about before, those things, I think, made the biggest difference to me. 

And I suppose the other thing that - I'm not sure if it's advice to myself, but the things that I learned about just why this was so difficult, that made a difference to me. So when I was reading about narratives of illness, and I talk about this a bit in my book, but Casey Weingarten talks about the difference between having an illness which is a well trodden path, and an illness, which is unknown. And, you know, we don't know about, medics don't seem to understand. It's huge. And she talks about her experiences of having an illness that's well trodden, that has a diagnosis, a treatment path and follow up. And then her daughter who has a rare genetic condition that nobody's ever heard of, really. And she writes about that. And I found that fascinating. 

And she talks about progressive illness narrative. So if you've got a cold, for example, people know how to talk about having a cold, they know you're going to be ill for 10 days and feel rubbish, and then you feel better. So we know how to talk about those things. But if you've got an illness that doesn't have a well trodden path, that we don't necessarily know how it's going to go. And it's not even acknowledged necessarily by medics, then it's really isolating. And it's really hard to talk about. And when I started to read about this stuff, it made me think, well, well, that's why it's so difficult, like no wonder it's so difficult, because that's really painful and difficult. And just understanding why I was finding it so difficult, actually, was really helpful.

Jackie Baxter  
And it's almost like, once you understand why something is so difficult, or even that something is incredibly difficult. It's almost like you let yourself off the hook a little bit, which maybe is helpful in itself?

Dr Lucy Gahan  
Yeah, I think it helps you find a path through it, having some understanding helps you find a path of some sort, even if it's a very Higgledy Piggledy path. And I suppose the other thing would be, I see my work with people with long COVID as helping people to reattach to the person that they were before, or the person that they're going to become. 

So when we were talking about loss, you know, you lose so much with this thing. How do you still feel like you? How do you find the You-ness you know? And for me, it was, I think, hearing a song on the radio that just made me think, Oh, that was me, that was me before this. I'm not just this person who's trying to get through every hour and day. I'm also this person that loved this song. And that's part of my identity. And, and that kind of made me realize that we need to find things that make us feel like us. And that's really difficult if you can't get out of bed. And yeah, it can be a real challenge. But anything that makes you feel like you, I feel it is really important to find.

Jackie Baxter  
Yeah, you're not just long COVID. You are more than just long COVID

Dr Lucy Gahan  
Yeah, exactly. Yeah. 

Jackie Baxter  
Wonderful. Well, thank you so much for chatting to me today. It's been so wonderful finally speaking with you after reading your book. And there's loads of helpful tips there, I think, for me, and for everybody listening, so I'll make sure I pop a link to the book in the show notes, if anybody's not read it, and we'd like to I can highly recommend it. So thank you so much, and all the best with your recovery.

Dr Lucy Gahan  
Yeah, thank you. It's been really great to talk with you and I don't know - I feel really passionate about getting our stories out there. I think it's really important and I kind of doing everything I can to you know, speak out about long COVID because we need it. So thank you for giving me the chance to talk about it.

Transcribed by https://otter.ai