94 - Jackie's Long Covid Recovery Story

Episode 94 of the Long Covid Podcast is a bit special - here I am handing over my hosting duties to my partner, Malky, so he can interview me about my recovery. Yes - my recovery - from Long Covid.

Although it's impossible to cover everything (I've already thought of loads of things I wanted to say but forgot), hopefully we got most of the important stuff.

As always - if you have questions - please do get in touch, as there's always the possibility of a follow-up (with any guest). And if I get enough questions for me, then I'll find a way to answer them.

Wibbs - who taught me how to breathe again & introduced me to Yoga.
Fern program (Suzy also offers gentle Yoga & more through her 360 Mind Body Soul Membership)

Previous episode links:
Episode 2 - My story from the beginning
Bonus episode - "2 years of Long Covid - what have I learned?"
 Episode 64 - "2022 reflections"
Episode 75 - "My 3 year reflections - are we nearly there yet?"

Safe & Sound protocol - I did it with Dr Sally Riggs, but it's available through many other sources too - more info here

My Vedicinals experience - blog

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

(music credit - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter  
Hello, and welcome to this episode of the long COVID podcast. This episode is special in many ways, but partly for the first time ever, I am going to hand over my hosting duties to my long suffering partner, Malky, so he can interview me about my recovery. So this is gonna be quite weird. And I'm gonna very carefully hand over the keys to my co-pilot Malky. And we're gonna see where this goes.

Malky  
Yeah, it's gonna be interesting this, so I get to turn the tables on you, and start by asking - so can you tell me a bit more about yourself pre COVID?

Jackie Baxter  
So yeah, I think this was something that I noticed when I was interviewing other people about their recoveries, that the story didn't really start with the illness. The story actually began long before in some people's cases, because what was going on before has seemed to be, at the very least relevant, for everyone. 

Before I was sick, I was living a very busy active life, my health wasn't really a consideration. I was in the fortunate position of never really having been properly ill in my entire life. I would have considered myself completely healthy. I was very fit, I was doing a lot of physical exercise. That was how Malky and I met, we hill-walked together, we cycled, we ran, basically anything that involved being active. 

And on top of that, I was doing what turned out to be a very stressful job, I wouldn't really have maybe thought that at the time. But I was doing a lot of commuting, I was working in education, which I think certainly can be a very stressful environment to be in. It turned out to be that way for me, partly because of the job. And partly because of my personality, where I just turned out to be a complete people pleaser, I would always say yes, to everything, I would never turn things down, I would, you know, just be doing far too much as it turned out. 

So I think the combination of all of that meant that I was living under a lot of stress of all sorts, sort of, you know, physical stress, obviously, from all the physical stuff we were doing,sort of cognitive, emotional, probably as well, because you know, when you get very involved in trying to make everything perfect, that becomes a bit of a thing. So yeah, I didn't understand what it was like to sit still, because I don't think I'd ever done it in my life before. And that was kind of me, pre-COVID.

Malky  
Yes, I remember it well. And obviously, I was there when everything went wrong at the start. But maybe for everyone else, do you want to talk about how the initial illness played out and how it developed into long COVID?

Jackie Baxter  
Sure, so I'm not going to elaborate too much on this, because I've talked about this quite a lot previously. And I might just drop the links to the previous episodes in the show notes in case anyone does want to kind of hear about any of that in a bit more detail. 

But the short of short story was, you know, I think a lot of people with long COVID say their initial illness was mild. And actually that things got kind of progressively worse as the long COVID kicked in. I wouldn't say that was exactly the story for me. I would not describe my initial illness as mild. There was actually a point where Malky called the paramedics, I'm not quite sure what you thought was going on, but you called the paramedics, which I think probably wasn't the wrong decision. But you know, they confirmed that it was COVID, which I hadn't actually realized until then. I sort of didn't think it was very likely, because at that time, in early March 2020, there weren't really that many reported cases around. So it seemed really unlikely. 

Anyway, the Paramedics confirmed that's what it was. But I just wasn't severely ill enough to be hospitalized. I might have, in hindsight, thought that maybe I was. But I think there were just so many other people that were so much more sick at the time. So that was kind of that. 

The first month was pretty rough. I'm not sure I really got out of bed very much on the first month, except for one or two times where I then did too much and put myself straight back there. Over the few weeks after, so that was about weeks five and six, things did improve a little bit. And then months, sort of a couple of months after that, I saw what I thought was dramatic improvement, where I went from really struggling to actually walk sort of to the end of the road kind of thing - my breathing was so bad, to the point where I was actually able to do quite a lot of physical exercise. So I sort of thought, Well, this has been awful, but you know, that's the end of that. We can move on. 

But that didn't quite go to plan and it was around about the three and a half months mark where, well what I would now describe as long COVID really hit. And I pretty much wrote that roller coaster for the best part three years. So I think, again, not wanting to go too much into detail, but the main symptoms probably are important. 

So I think fatigue was a main one for me. And this was something that I had just never experienced before. I'd been tired. Of course, I had, you know, actually, in hindsight, I was always tired beforehand. But you know, this was sort of can't lift your head off the pillow some of the time, kind of fatigue. Breathing difficulties were a big thing for me, I was really struggling to breathe a lot of the time. Heart rate that would shoot up, palpitations. I remember that being a terrifying moment where I'd sort of got up to go to the bathroom. And it took me like, a good half hour before my heart rate was anything resembling sort of semi stable. So this was pretty scary. 

And there was a whole host of other symptoms that were sort of less concerning, or less problematic, maybe. The weird toes - like my toes went black, I think we'd call them COVID toes. My gut issues weren't really that bad, but I did get a lot of intermittent nausea, bad circulation that was really, really exacerbated, post exertional malaise too, and sort of intermittent sleep problems. And I think, you know, now I would put all of these things under the umbrella of kind of dysautonomia. But in July 2020, this wasn't something that I, or probably anybody else really, had ever come across. Unless you had the misfortune, I suppose to have had it before COVID.

Malky  
Yeah. And then obviously, here we are on your podcast. And do you want to tell everyone how that actually came about? What made you decide to start a podcast? And you know, we're at what, 90-something episodes now - how have you managed to get so far in?

Jackie Baxter  
Yeah, I mean, I think there were sort of several things that all happened kind of at once. So one was that I sort of hit a summer holiday. And normally a summer holiday would be like, put all my stuff in the back of the car, and off we go hiking for basically as long as we have. But I wasn't going to be able to do that. So I was seeing this whole summer holiday stretching outt in front of me where I thought, Oh, my goodness, what am I going to do this is - it was like I was actually dreading it. So that was one thing. 

I think another one was that I actually, very shortly after that, ended up going on to sick leave, I had been attempting to work up until that point. And I'd sort of ended up on sick leave by all sorts of reasons. And I think I just felt like I was flailing. So this was August - September 2021. So I had been long-COVID-ing for what the best part of 18 months at this point. And I just felt lost, everything that I had been trying was not working. I didn't know what I was doing. 

And there was this kind of overwhelming feeling of isolation as well. I think, by this point, a lot of people, most people probably, were back at work, you know, sort of working in offices, socializing, doing all kind of like normal things, certainly in some form. Whereas during the lockdowns, I think, you know, I'd been feeling absolutely dreadful, but maybe the kind of like, missing out on life thing hadn't been quite so obvious, because well, everybody had been missing out on life during lockdown. 

So as we started coming out of lockdowns, and the world started going back to this weird idea of normal, then I think that was where I started feeling even more isolated. And, you know, although I had Malky, which was, you know, amazing that I had him here, even though I did, I felt very, very alone, because I had no idea what I was doing. 

So I think I thought, well, if I'm feeling like this, I know that all the other people who are also suffering, because by this point, I'd realized that it wasn't just me, then they would all be feeling like this as well. So I thought, right, well, maybe I can pull together some stuff, and try to share some stories, and, you know, help people to feel a bit more sort of connected and, you know, less alone. That was kind of how I started. 

And it really just exploded really into something where I was speaking to people in all sorts of different countries across the world, people who are medical experts in sort of different aspects of long COVID, and researchers who are, you know, researching into long COVID or, you know, related illnesses, and people who are sharing their lived experience stories. And, you know, I did a Google Map quite recently, of all the different places where I'd interviewed somebody, and it really is pretty worldwide. 

But yeah, it was just amazing. And it made me feel useful. And that's probably a whole topic that's worth going into at some point. But, you know, it was this, bringing people together, connecting with people. And, you know, I mean, all the things that I found that helped me really were things that I found through the podcast. So, you know, it really was a lifeline. It was really helping me to understand what was going on. And from that, what I could do about it, then sharing that with others, so that it might help them as well.

Malky  
So do you want to elaborate on the things that you thought helped them? Because yeah, I'd say most of the things that you found that helped did come from that.

Jackie Baxter  
Yeah. So I mean, I think to begin with, I find all the things that didn't help. So you know, my personality probably didn't help here. I thought, Oh, well, this kind of sucks. I know what I'll do, I will push through, I will exercise, I will push through more, because that is all I had really ever known. So when that didn't really work so well, I did it more. And when that still didn't go very well. Well, what did I do? Yeah, I did it more. 

So I was still working from home initially. And you know, the education system was struggling to adapt to online working. So to start with, my workload was thankfully pretty light. In hindsight, I should never have even been attempting to work. But at the time, I was, I think, just kidding myself into thinking that I was getting better. And this just went on and on and on for what a year maybe really, before I really kind of thought, I'm not sure this is working. And, you know, in hindsight, I was getting worse. 

I think within this time, I had joined some support groups. This was something that Malky suggested to start with, he said, you know, you should join a support group. And I think my initial thing was like, that just sounds really depressing. Because everybody's gonna be like, ill. And that was kind of the case. But also, it was a community where people really did understand, and all these weird and wonderful symptoms that I was getting, I was able to kind of go, oh, it's not just me. 

And then I suppose that did kind of lead into sort of educating myself on what was kind of going on with my body, I suppose actually, more of that probably came through the podcast. That was definitely a kind of, I don't know, a validating moment, maybe, joining the support group. And I think that is important, you know, being validated by well, anybody, but you know, finding community and people who are having similar or certainly relatable experiences. 

But yeah, I've got a big three, really, of the things that helped. So I mentioned that my breathing - I had a lot of breathing difficulties. They were really, really severe early on. But even like, a year on, after a year of, you know, trying to do the wrong things, it was still really, really bad. So, yeah, breathing was the first thing that I found. 

So discovering, actually, that I had completely dysfunctional breathing, like, it would have struggled to be that much worse, really, my breathing. So the first thing I did was, basically, retrain myself to breathe. And this was hilarious to start with, because I thought, well, how can you breathe wrong? Like, you know, breathing is a thing that you either do or you don't. But it turns out that actually breathing is something that you can do wrong. And that fixing it was absolutely huge. Because that then, obviously fixed my breathing issues or a lot of them but it also helped with the heart palpitations and all of that sort of stuff as well. So that had a huge impact on that. 

But then once I had actually kind of fixed my breathing pattern, I was then able to use the kind of power of the breath to then influence what I had, by this point started to understand was the autonomic nervous system. And this was part of dysautonomia, where your autonomic nervous system which effectively controls most of what goes on within your body. When you have dysautonomia, your autonomic nervous system is kind of wonky. And it just doesn't really kind of function that well, which is why all of these different processes in all these different places of your body, kind of are all misfiring in different ways. 

So once I kind of understood this, and I had actually learned or relearned how to breathe, I was then able to use the breath to influence the nervous system. So when I started getting heart palpitations, for example, I was able to use my breath to calm the nervous system down to improve things. And this was just such a powerful tool and I got really obsessed with breathing, and I still am really obsessed with breathing, because I'm actually currently finishing my breathing instructor training. So that was a big thing for me. 

And then that led me into yoga nidra and sort of very gentle yoga and this concept of real rest. And I think I mentioned already that I didn't really know how to not do things. And I think it had never crossed my mind that like not doing things was even a thing that people should do. I think, you know, this whole experience, I suppose, is challenged quite a lot of things that I thought before. You know, it's like people that were sitting around kind of doing nothing and relaxing, Well, why aren't they doing things? And, you know, obviously, I now know that that's a completely ridiculous thing to think. But I think my way had always been that I was always busy, I was always doing things. So resting was boring, no thank you. 

But I needed to rest, I needed to not do things. But my brain wouldn't allow me to do this, my brain was like a hamster wheel, it was going round and round around around around. So every time I did try and lay down and rest, it was just kind of, you know, talking at me and not allowing me to actually do that. And when I discovered yoga nidra this was, I think the only way I really found to properly switch off. And you know, don't get me wrong, my brain would still wander some of the time, but it was so helpful. And I would just do these pretty regularly, wouldn't I, and I just, I would always feel better after it. You know, sometimes it would work better than others, but it would always help. 

And the same with the very gentle yoga. You know, I was able to do that some of the time. And it would feel like I'd kind of moved my body but without kind of depleting myself of energy. Because if it was very gentle, then, you know, hopefully you're getting more benefits from it rather than knackering yourself. So yes, step two, I think was really kind of embracing - I'm not sure if embracing is quite the right word. But you know, embracing out of necessity, real rest, and accepting as well, I think, that it was a necessary part of everybody's life. Even healthy people should rest, and that you didn't need to earn rest, that rest wasn't a bad word. It wasn't lazy. It was something that everybody should build into their days. So I think that was a bit of a moment. 

And then the third big thing for me has been cold water. And I think this was something that had to happen after, certainly after the breathing. Because if I had tried to get into cold water when my breathing had been completely dysfunctional, as it was to start with, I probably would have hyperventilated, which is basically what I was doing anyway. And passed out in the water, which, for obvious reasons, is not a very good idea. So I think the breathing had to happen first. 

But again, somebody suggested to me Oh, cold water is really good for you. And I think to start with, I had just kind of gone. Yeah, great. Thanks. No, thanks. But I think eventually, I just thought, Well, why not try it, the weather was warming up. We are very lucky to have Loch Ness just down the road. And, you know, it was kind of like, right, well, let's give it a go. 

And the first time we went down there, I was, I don't know, I can't remember how long I was in. But it was really not very long, you know, I basically managed to get under the water, and shouted at Malky to take a picture really, really fast. Because, you know, obviously, being in the water in Loch Ness looks pretty cool. And then I just sort of got out and was like, Whoa, that was an experience. 

But I think once I kind of got dressed and got a bit warmed up, I just felt like I'd been plugged into a socket, I had more energy, I felt better all over than I had before. And this didn't last. But we kept doing it. I guess I'm just a glutton for punishment. But you know, I kept doing it. And each time I went into the water, I felt better, each time, I would feel better. And then over time, the effects of the cold water would then start to last more and more, longer and longer, I was able to do more as a result of the cold water. So we worked out, didn't we, that if I had had a swim, then we might be able to, you know, go for a bit of walk afterwards. It didn't always work. But it did - you know, there was definitely a pattern there. 

And over time, I was able to stay in for longer, and actually kind of swim around a bit. Whereas to start with, I was basically getting in the water and sort of dunking for, I don't know, not very long and then get into - maybe 30 seconds, and then getting straight back out again. But yeah, over time, I was able to start swimming more. And I mean I've got post exertional malaise from basically anything, but I've never had it from being in the cold water and from swimming in the cold water. So there's definitely something there. 

I think socially it was good as well. You know, it was something that Malky and I were a able to do together. I joined a swimming group locally, it took me ages before I actually went out and swam with them. Because I didn't want to do the thing where I was like, I'm probably going to cancel. Because, you know, when your health is really unpredictable, it's quite difficult to make plans. And eventually, I just went, and I realized that actually, these people weren't gonna judge me for not showing up, because they didn't know me before. They all had their own reasons for swimming. And actually, it was just really nice to actually, like, have some friends, other than Malky. And it also meant them out, you didn't have to come swimming with me so often. And it gave me a lot of confidence, I suppose to just be able to get out the house on my own in a way that I wasn't really before. 

So that was my big three, I think a few other things I mean, you know, just de-stressing, like allowing myself to let go of things. So you know, I suppose I am quite independent, maybe or certainly I was, and I didn't want to let go of chores. But you know, I was forced to. And then I think it was when I just thought you know what, actually, Malky, you can just do all of them. And you sort of did..

Malky  
It kind of worked - all the things that needed doing got done.

Jackie Baxter  
Yeah, it was kind of like what's important and what isn't, you know, and if the chores were important, then Malky did them. And if they weren't that important, then they just kind of didn't really get done, you know, our floor didn't get hoovered very often. But like, who really cares. And letting go of work as well, I was sort of given a choice between going back to work physically and going on to sick leave. And going back physically just wasn't really an option. So I went on to sick leave about 18 months after I had got ill in the first place. 

And at the time, I didn't want to, but looking back on it, it was the best thing that could have happened. So really allowing myself to let go of that. And, you know, be able to focus on me rather than pushing myself through stuff that I shouldn't have been trying to do in the first place. So I think that was quite a big thing as well. I think also as things did improve learning when I could do things and when I shouldn't. So really learning to listen to the signals that my body was giving me. Getting outside and doing some form of movement was incredibly important to me. But I had to bring this down to a level which I could manage. And although I didn't always succeed at this, I did get better at it over time. 

I tried lots of other things, some of them helped a bit. So I did the SSP. This is the safe and sound protocol. And I did find that useful. The Vedicinals I tried as well, I've done a whole blog post on that it was quite an experience. I think it did help my gut a bit. I wouldn't have said it was a huge improvement. But it was definitely worth trying. And journaling as well was quite useful. I don't use it often because I'm not really a writer. But I have used it to quite good effect, sometimes, you know, if I'm feeling really stressed or really anxious about something, that's something that I have done a bit. 

Things that I tried that didn't help. I tried a whole load of different supplements, I don't think any of them made any difference to anything, other than depleting my bank account. I tried nattokinase, which again, didn't seem to make any difference whatsoever, except giving me like completely insane periods, which I really didn't need on top of anything else. I tried this frequency machine, which didn't seem to help. And I tried cutting out all sorts of things from my diet, which again, didn't seem to make any difference. And I think, you know, it was worth trying all of those things. But they didn't make any noticeable difference. So they all got abandoned, once I decided that they weren't helping. 

But I think one other thing that was a big help, was starting to speak to a counselor. And this was something that I didn't want to do because - well I didn't need to I had Malky. And then it was actually speaking to Suzy bolt in maybe October, I think 2021 where she said, Oh my goodness, you can't put all that on to him. And I was like, oh, yeah, okay, maybe you've got a point. So I started speaking to somebody, and she has been absolutely brilliant. I know it was helping me to deal with my stuff, basically, while I worked my way through stuff. And you know, all the sort of the ups and the downs and the sort of mental side of it, which I think really can't be underestimated. 

And she was great to bounce ideas off. She was great at kind of just putting me back on my feet when things had not going so well and keeping me kind of a bit more balanced. And questioning me as well sometimes - some of my maybe assumptions about things or you know, asking me why I was thinking certain things or why was I tried to make myself do certain things. So she was great. 

Because I think one thing - as I started finding things that helped, so my breathing, my yoga nidra, my cold water - as I started seeing improvement physically, it was almost like an unmasked a whole load of other sorts of mental health stuff underneath, that I hadn't really been aware of, because I'd been so focused on the physical. Because I mean, why wouldn't you, when you're sort of being smashed in the face with like, I can't breathe and my heart's going insane. 

But it was almost like, you know, as that all started to kind of simmer down and clear up and, you know, just improve, you know, there was all this kind of anxiety about everything that, you know, was caused by COVID. But obviously, making everything else worse, because if you've already got a racing heart, it's going to make you anxious. And then if you are anxious about your racing heart, your heart is going to race more. So that was quite a big thing, realizing that was something. 

And then just understanding this idea of trauma as well, because I remember someone talking about trauma to me, and I was like, Oh, really get trauma from this? And, you know, oh, that's the sort of thing that you get when you're, you know, coming back from a warzone, that sort of thing. Trauma is like big stuff. And then I realized, actually, this is big stuff. So understanding that, and kind of understanding that, you know, you need to kind of work through all of this stuff. So that was all quite unexpected, maybe. 

But yeah, I think, you know, all of these things that I kind of worked out or understood or learned, you know, it was all really stuff that I kind of found through doing the podcast. So I set out to help myself and to help other people. And I hope I've done that. But I've certainly found, it's really, really helped me, I think, has really given me kind of things that I have eventually managed to recover.

Malky  
I certainly remember when you started doing the podcast, and you started looking into some of these things, you were physically improving a bit. And you were, I just remember you getting very annoyed and bored, that just couldn't do the things you wanted to do. And that was, I think we both noticed that because the things that we did together, were the things that you couldn't do anymore. And you got to see me going to do it occasionally. Which was even worse. How was that for you then?

Jackie Baxter  
Yeah. I mean, it was horrible. I think the things that made us us were the things I couldn't do, which made it even harder to stop pushing through, because, you know, Malky was like, Let's go for a walk. And I was like, I can't do that. Or I certainly shouldn't do that. Because it always makes me feel worse. It's the choice between making myself do something that is probably going to make me feel worse, or sitting at home on my own while Malky goes to do something that I want to do, but I know I can't but you know, so it was this kind of like, ridiculous paradox. 

But you know, I think when I did stop pushing through and find things that did help, that was when I started to see, well, if not improvement, then certainly kind of glimmers, and improvement then sort of happened over time. But you know, I had to really, really, really cut back. I mean, I think to start with, I thought I had cut back, that was the problem. I was used to exercising at a very, very high level. So I thought, right, well, maybe I need to do a bit less. So you know, I'll do a slightly shorter walk. But you know, a shorter walk was still far, far more than I should have been doing. 

But it took me a long time. I think, I think I did just kind of reduce things over time. And, you know, the level of stuff that I had to reduce my physical activity to was lower than I could possibly have imagined. And, you know, I think I was just getting more and more depressed over time as well, because I was like, Oh I can't even do that. What do you mean, I have to try and do even less than that? So that was really difficult. And then as as you say, I was having to see you going off and doing it. So that was really tough. 

I think acceptance is one of these words that people say. And when people said that to me, initially, I just didn't react well. Because I was like, What can you possibly mean, that I need to accept that I'm going to be like this forever? Like it was just it was unthinkable. And I refused point blank to even really think about it. And I think it was over time where I realized, or maybe I was helped to realize, that acceptance well, certainly in this case, it doesn't mean I'm accepting that this is me forever. Because I don't think I was ever going to really accept that. But if I accept that in this moment, in this moment of my symptoms are all going you know, crazy and I can't do the things that I want to do and everything seems awful - if I can accept that in this moment. This moment is pretty awful. But It will pass. And this isn't forever. So accepting the moment, rather than accepting the always. And then it made it a little bit easier to not fight against it. 

Because I think that was something that really helped me, you know, it was to stop pushing, to stop fighting. Because, you know, every time I fought it, it was giving the wrong signals to my body, you know, it was putting me back into fight or flight, or keeping me in fight or flight, given that I was there most of the time anyway. So, so really, that kind of, you know, backing off and stopping fighting it. That was quite helpful. But it took me a long time to get to the point where I could actually even understand that concept, because I just, you know, fought against it. 

But I think, yeah, really, really focusing on the things that I could do. That was helpful. When I interviewed Dr. Boon Lim, this was something that he said to me. And he said, you know, "don't let what you can't do prevent you from doing what you can." And I thought this was such a amazing thing to say that I actually wrote it on a post-it note, and it is actually still on the wall in front of me now. And that really allowed me to kind of be like, right, let's stop thinking about what I can't do, and try to think what I can. 

So you know, Malky, and I, what we do is outdoor stuff. But what can we do? Well, actually, we could do some cold water together. That was something that we did together. I think Malky even enjoyed some of it. But you know, we started playing music together. So we started playing tunes together. And it was just really fun. It was something that we'd not done before. But it was something that we could do indoors, sitting down, for short periods of time. And you know, it was kind of keeping my brain working, but in a kind of low impact kind of way. 

But there was other things that I was doing as well, I joined a online Lord of the Rings read aloud group, which really turned into the kind of highlight of my week, because these were people all over the world. And we came together on Zoom for a couple of hours on a Saturday evening and talked about Lord of the Rings. And it was just incredible. I had the podcast. And that was something that I was able to work around kind of what I could do, largely. And I even started gardening because I could do that kind of sitting down, in small bits as well. And it got me outside. And I think that was one of the important things was being able to be outside. 

But yeah, I think another thing that was going on from that concept of focus on what you can do, I came to the end of my sick leave earlier this year, right at the beginning of the year. And although I was doing much, much better, I didn't feel ready to go back, you know, I thought if I did go back, it's going to make things worse at this point. So I applied for a career break, which was something that I was able to do through my employer. And this would basically give me unpaid, but would hold on to my job for me. 

And this really enabled me to kind of stop obsessing over what I couldn't do. Because you know, when you can't do a job, you're worried about not being able to do the job, you're worried about all sorts of things, you know, finances and letting people down and all of these thing. And it was always like, Oh, no, I can't come to work because of this. And here's another sick note, because I can't work. And you know, I can't do these things that are important to be able to do if I was going to be at work and all of these things. 

So when I got this career break, it was suddenly like, I've got rid of the "can't" around work. And I could really start to think about what I could do, because I could do a lot. And you know, as time went on, I could do a lot more. And I think it wasn't until after the career break got okayed, and that started, that I just didn't realize how much stress that it was causing me, you know, having this job that I couldn't do, until suddenly it wasn't, you know, I may have had a whole load of other worries at that point. But, you know, relating to that job. I didn't have to worry about not being able to do it, because I was on a career break. So I think that was quite a huge piece as well. I remember just kind of feeling that stress, kind of sort of lifting off me, almost at that point.

Malky  
Yeah, I think I remember after that you definitely made some fairly noticeable improvements fairly quickly. But then that led you to here. So what - how did you know that you were fully recovered in the end?

Jackie Baxter  
Yeah, I mean, this has been a kind of a process. So the career break definitely helped because that just removed a load of stress that I just didn't realize was there. And you know, stress was something that I learned was such a massive exacerbater, if that's even a word, of my symptoms. So any sort of stress, you know was be it an argument with Malky, or another sick note or, you know, whatever. So that was really helpful. 

And I think it was around about March, where Suzy Bolt suggested, would you like to do the Fern program? And I sort of said, What's that? And I thought, well, if she thinks that it would be helpful, then maybe it would be. And I actually did find it really useful. I think, I think going into that, looking back on it, I was probably about like 90-95%, I find it really hard to put percentages on it. But you know, I was doing really, really well. It was just like, I was stuck at this, I'm almost there kind of thing. But there were just so many bits and pieces that were still kind of a problem. So, but I think at the time, I didn't realize quite how well I was doing. I think at the time, I was still thinking that, you know, there were way too many things wrong. 

So yeah, I found it really useful. And one of the things I learned through doing it was that I was a perfectionist. And you know, if you'd have asked me four years ago, are you a perfectionist? I would have said, Well, yeah, duh. But I think it was really realizing actually how much of a problem that was, or how much of a problem it could be if it took over your life. Because, you know, if my recovery had to be perfect, then I was kind of constantly putting myself under pressure. 

So yeah, realizing that actually, how kind of detrimental being a perfectionist was, or could be, you know. I think it's useful, maybe in some areas of your life. But if that's all you ever are, then you know, being a perfectionist and trying to do everything really fast, is kind of not a great thing to be doing all the time, especially when you're ill. And actually, you need to be kind of being kind to yourself, and you know, not putting yourself under pressure. So I think this, this was quite a useful thing. 

I think the phone program was useful in other ways, there were a lot of things that I knew already. But it was almost like Suzy put them in a nice, neat little box where I went, Oh, yeah, you know, I knew that already. But now I can actually kind of use it as a tool. So I would, I would definitely kind of recommend people looking into that if they're interested. Because I think it really helped me to step out of the illness and then sort of embrace living life. You know, I was so worried about overdoing things, that I was actually, you know, putting myself into big state of anxiety about stuff, which was then making stuff worse. So it's kind of just allowing myself to kind of step out of that and to go, actually, I think I am actually okay. 

And, you know, the final realization of actually realizing that I was recovered was actually while I was being interviewed by Lorrie Rivers for her Holistic Healing Summit, which has just taken place. And, you know, she was asking me how I was doing, and I did the whole thing where I was like, Yeah, I'm doing really, really good. I actually, I'm not sure I consider myself ill anymore. I wouldn't say I was recovered, but I'm not sure that I'm really kind of ill anymore. And I think we must have been talking about this perfectionism thing, where I suddenly went, Oh, my goodness, I'm doing it again, aren't I? My recovery has to be perfect. But no one's ever perfect. 

Because if you walked down the street, and you know, ask any person on the street, if they weren't 100%, completely fine. They would either say, No, I've got a little niggle here, or I've got something there. Or they would be lying, I think, you know, nobody's health is perfect. So realizing that actually, I'm not the same person I was before. Actually, I think in a lot of ways I'm better. But you know, that now my life, instead of having a really crappy immune system, because I was constantly stressed. Actually, now the thing that I have is, maybe I have a bit of anxiety. There's all sorts of trauma that I have no been through. And that has kind of changed me. But actually, I'm fine. 

And it was almost like I was expecting this moment of fireworks. And, well I suppose like having this realization while you're being interviewed on video, if that wasn't a sign, then I don't know what it is. So I think it was when I realized that I was able to push myself and not have to worry about doing things. Because there weren't repercussions, or certainly that they weren't repercussions beyond what a regular healthy person would have. So I think I think that was the moment for me. 

And I remember going through to see Malky after I'd finished that interview, and I was like "Malky, Guess what?" And you were like, "what?" And I was like "Malky I'm recovered!" And Malky said, "I know". And it was almost like - I mean, Malky said to start with, you know, when I first got ill, that my brain was ahead of my body. So my body wasn't able to do things, but my brain still was telling me that I should be. And you know, over time, my brain caught up and it said, Oh no, you shouldn't be doing things. Let's stop doing all the things. 

And then, you know, coming out this end of it, is the other way around. Actually, my body's doing pretty good. But my brain was taking a lot of time to catch up, because it was like, well, we've learned all of these lessons over the last three years. When we do things, it goes badly. So let's not do the things. So it was almost like my brain was holding me back. So it was kind of like the tables returned. And when I finally kind of caught up and realized it was like, oh, okay, yeah, this is great. This is cool - I'm recovered.

Malky  
Brilliant! So do you want to tell us what life's like now then?

Jackie Baxter  
Yeah, I mean, this is a whole weird thing. So at the moment, I am going through this weird kind of readjustment phase, where, you know, I'm fine. And I can do things, but sometimes I just kind of have to remind myself that I can do things. So like, you know, if I do something in the morning, and then Malky says, Do you want to do something later on, and I'm like, but I already did a thing. And then it's like, oh, but it's okay. I can do things now. So it's, you know, it's great, you know, life is really exciting. 

I'm really lucky to have this career break, you know, it's nice to have this time to kind of reassess, reprioritize. I'm just finishing my training as a breathing instructor, because I want to use this as a way to really help others, sort of with their experiences, but you know, using my own experiences to help. Yeah, I already said, you know, being able to do things without worrying about repercussions. 

But I think I really want to learn some lessons from this, you know, the life I was living, maybe beforehand wasn't 100% healthy. And, you know, I want to keep those healthy habits and not fall back into the patterns that may have led to the illness in the first place, or certainly contributed to it. Many of them are patterns I've had since childhood. 

But you know, I think I see Jaxter2.0 as an upgrade. Things are the same things are different. You know, I think I'm still fundamentally me. My brain is still always on. But I now remember that sometimes I need to turn it off. I'm still fire-working out ideas all the time. And Malky has to kind of say, do we need to brain a bit less for a bit? 

Malky  
Just do one at a time? 

Jackie Baxter  
Yeah, yeah. But I think I have more respect for my health. I now know that I can't take take take all the time without giving back. And it's okay to rest. In fact, it's absolutely fundamental to rest. You know, it isn't a dirty word.

Malky  
Do you feel you learned anything else?

Jackie Baxter  
Oh, yeah. Loads. I mean, yeah, you know, I was just talking about, you know, not taking your health for granted. I'm now recovered. But I still want to be as healthy as I possibly can be. So I'm in the best possible position for if, I mean - probably more likely, when, the next kind of life stressor comes along, whatever that is, you know, be it an illness or something else. 

And I think, maybe a part of this was just kind of understanding responsibility as well, you know, this life that I was living before I got sick. It wasn't as healthy as I thought it was, you know, I thought fitness and health were the same thing. And it turns out that actually, they're really not, you know, they're obviously related. But you know, health is probably more important. And although I'm not blaming myself for getting sick, because even if that were true, it would be a pointless thing to do. I think recognizing cause and effect is important, and maybe just taking a bit of responsibility for my health. And then using that knowledge to stay healthier in the future. 

I think I've learned the concept of boundaries. I mean, if someone had said boundaries to me before, I'd think about like boundaries on a map, but actually boundaries, like this thing where we can say no, and we should say no, you know, not all the time. But not being taken for granted, and just really standing my own ground into places where I maybe didn't realize I needed to before, but I certainly appreciate that now. 

And I think really listening to your body as well, that was something that I just never did. You know, it was clearly trying to tell me something before and I wasn't listening to it because I didn't think I needed to. But you know, no one else knows your body better than you do. So, you know, if I'm not going to listen to it, then nobody else is.

Malky  
Which is all really good advice. So if you met yourself now, the you have three years ago, and you had just got ill, what would you tell yourself?

Jackie Baxter  
I mean, being me, I would tell myself lots of things and I probably wouldn't listen to any of them. But you know, I think I would say to keep an open mind. The things that helped me the most were actually the things that I probably would have dismissed out of hand, if they'd been suggested at the start. You know, my doctors didn't really help me, which I think doesn't say a lot for the medical system in terms of chronic illness. Although to be fair to them, they did believe and try to support me where they could. But I also see that it's been quite empowering, that I kind of worked this all out myself, you know, with help from other people. 

I think, yeah, remember that this journey is not linear, there will be ups and downs. But yeah, rather than being devastated by the downs, you know, there's this amazing quote, I can't remember who said it, but they talk about trying to see the downs as speed bumps, they slow you down, but they don't ultimately stop you from getting where you're going. 

I think another thing is to ask for and accept help. Because that's not something that came naturally to me. Once I allowed Malky to actually take over stuff, and had gone on sick leave from work. That was when I started to kind of start to pull things together and to see an improvement. At the time, it felt like giving in, it felt like giving up my independence. But in hindsight, I should have done it from the start. 

And I think yeah, beyond that, be kind to yourself, you know, it sounds kind of wishy washy, hippy dippy, doesn't it, but I think it really is true. Someone I interviewed talked about mental self-harming. And I think, you know, it sounds a bit dramatic. But actually, we can be pretty awful to ourselves. And when things are difficult, we will make mistakes. And we will probably say things to others that we don't mean, and we say things to ourselves that we don't mean. So, you know, I think be as kind to ourselves as we would be to somebody else that we care about. 

And I think as well, just a belief in recovery, belief that you will get there. I think belief is fundamental to recovery. So even in those bad moments, keep believing that you will get there because if you lose that belief, it can become a pretty dark place, I think.

Malky  
Well, yeah, that's brilliant advice. So - well thank you for being a guest on your own podcast and for sharing your story. Jackie will be back next week, in the usual seat without me, asking much more useful questions to somebody else. Thank you. 

Jackie Baxter  
Cheers.

Transcribed by https://otter.ai