56 - Johanna Rayl - Long Covid Recovery

Episode 56 of the Long Covid Podcast is a chat with Johanna Rayl who has recovered from Long Covid. We chat through her initial illness, how this progressed and then how she recovered.

We also chat through some things she learned along the way and useful tips with the benefit of hindsight.

(Transcript now available - sorry for the delay)

CFS Unravelled

ANS rewire

Curable app

Johanna's 8 pieces of advice article

Podcast on fear

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(music credit - Brock Hewitt, Rule of Life)

Transcript

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Welcome to the long COVID podcast with me, Jackie Baxter. I'm really excited to bring you today's episode. Please check out the podcast website, longCOVIDpodcast.com, where there's a collection of resources, as well as a link to the Facebook support group. If you're able to, please consider supporting the show using the link in the show notes. If social media is your thing, you can follow me on Facebook @LongCOVIDpodcast, or on Twitter and Instagram, both @LongCOVIDpod. I'm really keen to hear from you. If there's anyone you'd like to hear on the podcast, or if you've got any other feedback, please do get in touch through any of the social media channels, or email LongCOVIDpodcast@gmail.com. I really hope you enjoyed this episode. So here we go.

Jackie Baxter  0:00  
Hello, and welcome to this episode of the long COVID Podcast. I am delighted to introduce my guests today. Johanna, who has recovered from long COVID. So we're going to be chatting about her experiences. And of course, what we all want to know, which is how she did it. So welcome to the podcast.

Johanna Rayl  0:20  
Thank you so much, Jackie. I'm excited to be here. 

Jackie Baxter  0:22  
To begin with, would you mind just briefly introducing yourself a little bit and what it is that you do?

Johanna Rayl  0:28  
Yeah, I am a PhD student in economics, I study the economic impacts of climate change and environmental policy. I grew up in the Seattle area, and I live in Chicago. I am a very avid outdoors person and love being in and around the water. And I got sick about two and a half years ago with COVID. But I'm very excited to be like, fully re-entering an amazing level of health after a long journey.

Jackie Baxter  1:00  
Yeah, that's wonderful. It sounds like you're sort of just able to grab your life back almost. So it sounds like you got ill kind of near the start of the pandemic. Is that right? You said about two and a half years?

Johanna Rayl  1:15  
I did. It was April of 2020. And I mean, looking back at that time period, I went into getting that infection with a very, I think high level of chronic stress. The previous two years have been extremely filled with anxiety for me, because of a number of reasons. And I've kind of always been someone pushing hard in all areas of my life. And so I would have said that I was a perfectly healthy individual going into the Covid infection. And I think even if I went in and did a routine physical at that moment, even most doctors would have said the same. But kind of looking back I I view it as a virus happening on top of this massive load of chronic stress. And so I think really the the story of my long COVID begins quite a bit before that infection date.

Jackie Baxter  2:15  
Yeah, for sure. When you're ill for a long time, you start thinking about an awful lot of things, don't you? And I'm one of these people that likes answers. You know, why did this happen to me? You know, what's going on? What's all of this and you do start to reflect, don't you on some of those things? And that sounds like that was what you've been doing as well?

Johanna Rayl  2:35  
Yeah, absolutely. I mean, I think probably we'll get to this as we talk about recovery. But it was amazing how much, how much of this reflection started happening super naturally, once I was really on the mend, and how much of it I wasn't really noticing before, as I was still trying to just kind of power through.

Jackie Baxter  2:57  
Yeah, I mean, you do you get sort of consumed by things, don't you? You know, in life, I think - I was gonna say that's normal. I'm not sure if normal is the right word. But when you're working, or you're studying, you know, you do get very consumed by that. That's kind of the nature of it, isn't it? And then when you are chronically ill, again, that does consume your life, because it is every single part of your life. You know, it controls everything, doesn't it? So it's very easy to get consumed by things. But then it's also quite hard, I find anyway, to have any kind of perspective on it. Because you're so in it.

Johanna Rayl  3:35  
Yeah. I think in addition to that, there's the uncertainty surrounding the illness. And so unlike a lot of other illnesses, where you're sort of handed your prognosis from the doctor, and you know what the steps you need to take are, and you know, what the long term outlook looks like, you also have to make up your mind as to what you're going to believe as far as recovery prospects. And so that's just one more huge component to the murkiness. And I think getting into a really difficult mental place.

Jackie Baxter  4:06  
Totally because yeah, you know, it's obviously physical symptoms and things are physically happening to you or in you or whatever. But there's a huge mental side to it as well, when you're ill for a long time, isn't there? So when you were ill initially were you what was classed as kind of a mild infection, or how did that go for you?

Johanna Rayl  4:27  
I would call it moderate. I didn't go into the doctor. But in retrospect, in any other circumstances, I certainly would have - I was extremely sick. I guess I was cycling and running a lot, would have been swimming but all the pools were closed, kind of just with the idea that come summertime, there'd be like a normal triathlon season. So I was training a lot. And then I just started feeling like I wasn't recovering at all from my workouts. So I backed off and the more I backed off the worse I kept feeling until finally, I was just in bed, sleeping 18 hours a day. And that was about a week of that, just being completely horizontal, feeling extremely out of it. And short of breath sometimes even if I just sat up in bed, so definitely not mild. But I'm also thankful that I got through staying at home.

Jackie Baxter  5:24  
That's actually a really good point, we have kind of normalized a lot of things, you know, that we just put up with now. I mean, I couldn't believe how I've normalized chest pain. You know, like, normally, if you get chest pain, you're rushed to hospital with blue flashing lights, right? 

Johanna Rayl  5:40  
Right

Jackie Baxter  5:40  
But now you've got millions of people around the world sitting at home with chest pain, and they're told that they're fine. So they just sit there. So this kind of mild in quotation marks kind of illness. It's - mild is not okay. 

Johanna Rayl  5:57  
Yeah, not at all. 

Jackie Baxter  5:59  
So I mean, you must have been ill maybe a month later than me because I was March 2020. And kind of in the UK, there wasn't that much known about long COVID at the time, you know, it took quite a few months before there was any in the news or anything about people not recovering. So it took me a long time before I even realized it wasn't just me. Was it the same for you?

Johanna Rayl  6:21  
It took a little while. And I think there was a long period where, because of what I was beginning to hear in the news, I was pretty sure this is exactly what's happening to me, this sounds identical to all these other stories. But then, in terms of the care I was getting, I don't think doctors were comfortable giving that diagnosis very much yet. And so those first three to four months afterwards were definitely super frustrating, as far as making sense of what was happening and trying to get some care. And that started a very long string of appointments. And I went to general practitioners and a cardiologist for kind of the full workup as I was getting all these exercise shortness of breath, chest pain type symptoms, led to a allergist and an immunologist. 

But there were essentially no answers from that process. And not even really, until many months later, someone that was willing to say the words "long COVID", it was kind of like, well, we're not really comfortable saying that. But also, we have no alternative to give you. And at that point, health wise, I was kind of cycling back and forth between like feeling pretty decent, although completely unable to exercise. And then having these like week long periods where I got back all of the symptoms of the original infection, and was completely flattened. So I think that period of time looks different than what the more chronic stuff settled into, after like five or six months.

Jackie Baxter  8:01  
Yeah, the sort of the ups and the downs. And for me, that's been one of the most frustrating things because you have this, you know, a week or whatever period of time where you start to think I'm starting to feel a little bit better. Now, this is great. And maybe you'll try and do a few things. And you know, you'll get away with a few of them. And you'll think, Oh, this is great. And you'll start to think I'm getting better. And then it all goes horribly wrong again, and you have a week where you can't get off the sofa or you feel terrible and all your symptoms are back. And it's really, really tough, isn't it to have that feeling of, I think I'm getting better only to have the hope crushed completely Tte following week, or whenever

Johanna Rayl  8:47  
it's pretty excruciating. 

Jackie Baxter  8:49  
It's brutal, isn't it? 

Johanna Rayl  8:50  
Physically, it's horrible. And mentally and emotionally, it's just, like, heartbreaking, really. I and I think, again, that's so emotionally painful because of the lack of outlook that you have, and not knowing what to believe in as far as recovery. So the only signs you have are your physical symptoms, but they fluctuate so much that you're you're being pulled on this crazy roller coaster than never seems to stop. So I think that is, you know, quite possibly the hardest part about living with this. And this piece of it also that makes it really hard to understand for the people around you. Because they're going to see you on those days when you felt a little bit better. And you took the chance to go out and see your friends maybe, and then you bear the cost of that.

Jackie Baxter  9:43  
Yeah, you're right. You know, the the people around you do find it difficult. I mean, I think I've come to realize more as time goes on that in some ways, how can they understand it unless they're experiencing it themselves? And I've had a little bit more patience with other people, but at the same time, it is really, really frustrating when someone says to you, Oh, you're looking well. 

Johanna Rayl  10:05  
yeah, yeah 

Jackie Baxter  10:06  
that's the worst, right? Because you know that the cost is going to be for that going out with your friend or that having a phone call or, or whatever it is,

Johanna Rayl  10:16  
right? Yeah, yeah. I don't know, the the more times that that cycle repeats itself, the more desperation there can be, and the more the hopeful side of it can diminish. So I think there was a period, a little bit after a year, I was starting to think, you know, I continuously had to revise my estimate of when I'm going to be better upwards, it was like, at first, okay, maybe in, you know, a month, this will be gone. And then, or maybe by the end of the summer, we'll be back at things. And then, you know, it just continues from there. And then finally, I was asking myself, you know, how long can I keep having this idea of when I'm going to recover? And then having it not pan out that way? Am I going to let myself believe that full recovery is something that I can achieve? Or am I setting myself up for a huge amount of heartbreak if I allow myself to believe that?

Jackie Baxter  11:20  
You are literally speaking the thoughts that are in my head. Like, it's amazing how we all go through these thoughts, don't we? The thought of giving up, you know, you can't give up - because you know, what else is there to do? You have to keep going you have to keep trying. But at the same time, you know how painful that is. When you you know, you get that hope? And you keep thinking yes, I will recover? And then it keeps not happening. It's absolutely devastating, isn't it time and time and time again? And it's almost like it gets worse each time that it doesn't happen? 

Johanna Rayl  11:54  
Absolutely, yeah. 

Jackie Baxter  11:55  
So you mentioned that you'd send quite a lot of specialists and doctors, and none of them were particularly helpful, because they all told you that you were fine, which is great in some ways. But yeah, again, not very useful, I guess. So where did you sort of start your search for answers?

Johanna Rayl  12:15  
I think the first thing I did, after that summer of doing a ton of workup, seeing a bunch of specialists that was a little bit different was some acupuncture and herbal medicine. And I felt at the time that it was helpful. And maybe it was but it definitely wasn't anything that you know, completely changed the course of things for me. And I also that fall, I went into the Ph. D program I'm in now. So I was making some progress in that time. And I had been prioritizing rest a lot. But then I launched into this program and, you know, gave up any progress I had been making by starting something pretty intense. 

So I was doing those I was doing some physical therapy that the regular doctor prescribed, which I think was just one of the most frustrating experiences of the whole thing. I like, stuck it out because I thought that's something you should do for a while and then and then it was so clearly physically counterproductive and just making me so angry after every session that I stopped doing that. 

And then it really wasn't until roughly a year and a half of being sick that I decided to lean more into researching about chronic fatigue syndrome, knowing that has been around for a lot longer. And my particular presentation of long COVID was more or less identical to CFS. And I think maybe I would have done that sooner but actually heard from one of the doctors that I saw some comments along the lines of You know CFS is it's not really a real illness, it's kind of something that we this this catch all bucket we can put in people into that have fatigue and and we don't know what to do with. So that made me not pay any attention to CFS for a long time. 

And then and then I sort of gave it a second thought, especially knowing that probably some people have figured some things out about it. Having been around for a long time. And I started just trying to like look for any anecdotes of people that had CFS and fully recovered. So that was like my Google search like "full CFS recovery". That led me to a website called CFS Unraveled that is Australian Dan Neuffer has created. He recovered from CFS himself, designed a recovery program and then this website has a huge collection of interviews with people that some that were sick up to decades and were able to fully recover. And that was, like so heopeful to read and to discover. And that eventually led me to this online program that he had also created in the wake of helping himself get better.

Jackie Baxter  15:15  
Amazing. I mean, it's really interesting. I mean, I've been kicking myself since the start that, Why didn't we listen to the people with ME and CFS? You know, we should have listened to them earlier on. Again, hindsight, isn't it? You know, my initial kind of consultations with the GP when I wasn't getting better, you know, I spoke to them on the phone, and they said, Oh, you know, you'll be fine. Just keep doing a little bit more, you know, start exercising all of this stuff that we now know, is really not very helpful. And if we had listened more to the people with CFS, and with ME at that point, then I would not have started trying to make myself do things like that. Again, hindsight is great, isn't it? 

Johanna Rayl  15:58  
Yeah. 

Jackie Baxter  15:59  
But I think that's why it's really useful hearing other people's experiences as well, because it's hearing what they did that was helpful, but also maybe hearing what they did that wasn't helpful as well, so people can not make the same mistakes that we did.

Johanna Rayl  16:13  
And there's plenty of unhelpful CFS advice out there itself. So it's, I think it's part of a broader category of illness where we are lacking so much in terms of research and understanding and care.

Jackie Baxter  16:30  
Totally. Yeah. And there is so much crossover, isn't there between the illnesses? That yeah, we really should be kind of sharing knowledge, I guess, and then working together. So how did you kind of know that you'd come across the right thing? I guess, you know, was there a light bulb moment? Or was it more of a slow realization, or maybe even just a process of elimination?

Johanna Rayl  16:57  
it was definitely a bit of a light bulb, because I started just reading more about this idea that Dysautonomia, and dysregulation of the autonomic nervous system might be sort of the root thing that is happening in CFS, and some or many cases of long COVID, let's say. And this is the idea behind the recovery program that I found. And then I realized it was the idea behind many other similar recovery programs that seemed to have had a lot of success. And then I started paying more attention to that idea with respect to my own symptoms, and noticing the ways that different heavily stimulating environments were triggering a lot, a lot of my symptoms. 

And so I think just having been the first much closer to comprehensive explanation that made like so much intuitive sense, and really felt true to my experience, it was like, Okay, I have to give this a try. And this is like the most promising thing I've learned about in this whole process. And I had been aware of Dysautonomia, and PoTS much earlier, that I kind of thought maybe these are these separate side diagnoses that like come along with long COVID or CFS a lot of the time, rather than thinking maybe this nervous system stuff is like really core to the picture here. And the thing that we can get better from by addressing,

Jackie Baxter  18:42  
yeah, sure. Because I think I remember when I sort of heard about the autonomic nervous system, because you, you hear all of these words. And I think when you're very unwell sometimes you know, you just you hear words and you just can't really take them all in can you, and people talking about dysautonomia, and PoTS and MCAS and all of these different things. And I don't know about you, but I have this thing where I just need answers, I want to know things because if I know things, I can understand them. And then I can put them kind of into context of what's happening with me. 

And it was a little bit of a light bulb when I realized what the autonomic nervous system was. So I thought, Oh, alright, so that's, you know, that's why everyone's symptoms are different. That's why you get all of these different symptoms in all of the different parts of your body. It's because the autonomic nervous system that controls literally everything, and it was like, Oh, Ah, okay, I get it now. And then, you know, actually doing something about it is a whole different thing. But understanding it, for me was quite a big kind of moment. 

Johanna Rayl  19:44  
Yeah, absolutely. And it's just the moment of like receiving something that could very plausibly make sense of what's happening after being in this very murky darkness for so long, I think it's a powerful moment,

Jackie Baxter  20:04  
For sure. So you had this kind of moment where you sort of realized that this might be The Thing. How did you go about trying to sort of put that into practice?

Johanna Rayl  20:19  
The main thing I did at that moment was I started this recovery program called ANS Rewire that Dan Neuffer created. And I had heard these people in these some of these people in these interviews, talking about using it. And it's all online, a bunch of video content and other supplementary materials that are designed to help you understand this theory of chronic fatigue syndrome, and then give you tools to address the autonomic dysregulation. And so it had a lot of content. So for a while it was it was a lot of just absorbing all of that, and I was still in school, taking classes at that time. So I think I started to understand a lot of it, I started to become more familiar with some of the approaches, which broadly are removing triggers of your symptoms from your environment in your daily life. And then some brain training focused techniques that are about using the fact that everything going on in your conscious mind has a huge impact on how the subconscious and unconscious components of the nervous system are working. 

I was convinced that I had the tools that I really wanted to devote myself to, and still not quite the time and energy to devote myself to it, still being in school. And so I decided to go on full medical leave beginning this past January, so January 2022. And I think besides learning about Dysautonomia, and finding a recovery program like this, that was like, the most important decision that I made at any point, and I cannot believe I didn't make it sooner. I'm like in the most amazing position to have time off and still get paid medical leave, still have access to my health insurance. So it kind of could not have been a better opportunity to do that. And it was a enormous sigh of relief, to just not try and keep fighting to do everything anymore. And I felt that sigh like mentally, but physically so strongly. So things really began to change beginning that January.

Jackie Baxter  22:55  
Yeah, you mean you're right, you know, when you're at school, or if you're working, you see people on support groups all the time talking about that, you know, that they're struggling through their day of work. And that is literally all they can do, and they're destroyed by it. And like, I really feel for people, because some of them are in the position where they have no other choice. And I really do feel for them, it must be really hard. 

Johanna Rayl  23:21  
Absolutely

Jackie Baxter  23:21  
For me, I mean, similar to you, you know, having that time where you can sort of focus on what you need to do for you, rather than spinning all of your millions of plates in the air, as helped hasn't it.

Johanna Rayl  23:35  
Yeah, yeah and I think also looking at this, if if you think of this illness as the nervous system having taken on this enormous stressor, and then going a little bit haywire and having a very hard time accessing that resting and restorative state that you need to heal. The decision to let your body have the rest that it's asking for is extremely powerful. And resisting that is like the strongest possible message to your body that it needs to keep ringing all the alarm bells. So I think in some sense, the beginning of recovery was almost like a moment of surrender, like, just letting myself be sick. For however long I needed to.

Jackie Baxter  24:27  
We are really bad at that, aren't we, at just saying right? I'm ill, I'm not going to do stuff. So it's almost like you're encouraged to push through, you know, you're ill? Oh, well go into work anyway. You know, you have to keep doing things because that's what you do. And, you know, we all do it, don't we? And it's really, really bad for you

Johanna Rayl  24:46  
Yeah. And I think additionally in this situation, to not fully blame ourselves for this. We also didn't have the professional care. The people saying this is not something you want to be pushing through, because there's definitely situations where you're gonna hear from the professional that you need to rest for X amount of time. And I think not everyone will listen to that. But, a lot of people will, even if they won't listen to their own body, telling them the same message.

Jackie Baxter  25:20  
Yeah, definitely. I mean, you know, "listen to your body" is something that I've heard so many times in the last year or so. Or even more than that, I don't know. And it's something that you know, when someone says, Oh, listen to your body, and I just, it makes me want to punch them. Because I'm like, I'm trying, I'm trying, I'm really trying. But I don't know about you. But sometimes, it's quite hard to know what it wants, but then you've got your mind and your body saying different things as well, haven't you, sometimes?

Johanna Rayl  25:48  
Absolutely. And I think in this case, the listening is also kind of a double-edged sword, because you need to give yourself the rest, and help yourself, you know, get into a more calm state, but you're also being fed a lot of these extremely uncomfortable sensations, and listening to those, you know, just like fully absorbing yourself in how terrible you feel. That in itself is incredibly triggering, and a super intense, emotional, scary experience. So in some sense, you want to listen, and in some sense, you want to stop listening.

Jackie Baxter  26:34  
Yeah, it's like, it's one of those cycles, isn't it? Where you know, you need to listen. But if you listen too much, then it can make things worse. And it's, it's really hard to find a balance, especially when things are different all the time. What was good yesterday isn't always going to be good today or tomorrow. 

Johanna Rayl  26:52  
Yeah, 

Jackie Baxter  26:52  
it's really, really hard, isn't it? So we've talked about the sort of calming the nervous system, you know, and you mentioned acupuncture and I think, you know, some people have talked about that helping them and I think, from what I've seen, it seems to be different for different people. I focus a lot on the breathing, I've done a lot of wild swimming, which seems to be helping, but you know, what works for me is not necessarily going to work for somebody else. Because you know, while swimming might be incredibly stressful for somebody else, and that's going to have the opposite effect, isn't it? So in a way, is it something where people sometimes do you just have to find the thing that works for them?

Johanna Rayl  27:34  
Yeah, I think I think that's definitely true, I think a big part for me was starting to recognize the influence that this emotional cycle we talked about over the up and down of the roller coaster, how that was feeding back into the symptoms. And I want to be super careful, you know, not to say like, any of this is in your head. And it's all an emotional thing, because it's not whatsoever. But if you take the idea that the nervous system is at the center of this, and it's generating all these physical symptoms, it's also extremely responsive to what's happening upstairs and the emotional and logical thinking parts of your brain. 

So that's the thing that I think a lot of the nervous system focused recovery programs that I'm aware of, and some chronic pain, you know, fibromyalgia type tools are trying to harness the fact that you may not have control over the fact that your body is producing this symptom that's happening subconsciously. But you have some influence over the thoughts and emotions that happen as a result of feeling those symptoms, and a lot of power to slow and eventually stop this cycle in its tracks. I think there's a handful of online programs that have various, you know, their own brand of doing this. 

Another tool that I used that I found super nice, which is much cheaper, I think probably just like $15 is this app called Curable. And it markets itself a bit more towards chronic pain, but it also has, I think, plenty of users that have chronic fatigue and fibromyalgia. And it educates you a lot about the neuroscience of pain and then it has a lot of super useful exercises, things to listen to in the moment when you're experiencing those really intense symptoms that help you begin to relate to them in a different way. And so a lot of the work I was doing early on, in addition to just like letting myself sleep and lay on the bed as much as I wanted, was beginning to investigate how I was responding in my mind to the symptoms I was feeling and finding some ways to reframe those really intense moments of distress.

Jackie Baxter  30:15  
Yeah, that's really useful, actually. Because I've definitely noticed, you know, you're feeling okay. You think, right, okay, I'm starting to feel better, or, you know, this is a good day, and you're obviously feeling quite good about that, which is natural. And then you have a symptom or a couple of symptoms that start cropping up. And it's just for me, certainly, it's like, I find it very difficult to be like, Oh, okay, symptoms back, well, let's not panic, I go straight to panic, everything is awful. You know, this is back to square one, everything is completely terrible. And it's very difficult not to do that isn't, I think it's a natural reaction, right?

Johanna Rayl  30:58  
Yeah, totally. It's, you're, like, completely designed to have that reaction. But I think one reframe that was very useful was this idea that in order to learn to respond to symptoms in a different way, I have to have symptoms, like you cannot practice that skill on a good day. That idea was, I think, super helpful for looking at symptoms in a new way. 

I think another big thing, especially in the first two months, for me, that I was on this period of leave was like, holding back a little bit the desire to take a good day and, and do more. And, I mean, I think it's important to do things that make you happy, and, and I worked on finding alternative activities that brought me joy, that would take a bit less energy. But my tendency, for sure, was to take any better day as an opportunity to like, get all the stuff done that I hadn't been doing, and see the friends and everything. And I think, at least a short period of like taking that extra energy and just giving it back to my body for healing purposes was super valuable. And then later on, it became time to, you know, push a little bit more and see what would happen. But early on, gifting that back to my body was very important.

Jackie Baxter  32:33  
That's a really nice way of putting actually - to give it back to yourself. Yeah, you know, you're right, you know, you start feeling like, you know, you're having a better day and you think, right, I'm going to do all of the things because, you know, I get so few good days that I'm definitely going to make use of this good one. But it's again, it's a natural, very understandable reaction, but it's also going to precipitate more bad days, isn't it? If you overdo it on the one good one?

Johanna Rayl  33:02  
Yeah. And I think if you're in the mode of having no idea if you're gonna recover, thinking, okay, maybe this is something I deal with, on a really long term basis, then it makes even more sense to do that, because this is just how you're living now. And you need to find a way to get in some of the things that you love to do. If instead, you're able to - something gives you this belief that you're going to recover, and you're going to be able to do it in this chunk of time, although I think trying to have a deadline for recovery is a bad idea. But if you have a general sense that you're starting on this recovery path, and eventually it's gonna get you to full recovery, then it's much easier to say, Okay, right now, in the short term, I'm going to, I'm going to hold back a little bit, knowing that later, I'll be able to do anything I want to. So again, this like decision over what to believe, I think, has a huge impact on what kind of day to day decisions are going to make sense.

Jackie Baxter  34:07  
Yeah, that belief that you are going to get better, which I mean, you mentioned earlier, you know, your good days, you know, you can't practice the things that you need to practice when you're having a good day. And I think that's another thing, you know, this belief that you're going to get better, it's that you can have that belief when you're having a decent day and when you are feeling like you're getting somewhere, but then like I said earlier, you know, suddenly you have not such a good day or you know, your symptoms keep popping up and, and then suddenly that belief that you had yesterday, you don't have it anymore. You know, that's kind of making things worse, isn't it? To lose that?

Johanna Rayl  34:45  
Yeah. Yeah. For me, it was amazing. And, I mean, I think at the beginning, I was like, kind of weird to be buying a program that's has something to do with my health online, you know, I'd never done that or looked for healthcare somewhere, apart from the doctor. But again, it was like, the only thing at that point I had heard of that made like any sense, and it made complete sense. So I had to do it. And I mean, I only have good things to say about it. Really, I think it's super well researched, it's always supposed to be a supplement to having a doctor and making sure everything on that front is is taken care of. But it gave me I mean, really all the tools that I needed, I just had to be willing to make it my full priority. 

And I think it does a great job of, you know, it's working with this theory that we can really chang the course of this illness through changing a lot of our conscious thoughts about it. And I think it's super important when you move into that space to make sure you're still acknowledging this is like a physical illness. And we're not saying this is something in your head, and you're, and you just have to, you know, deal with it better. It's very clear in addressing the fact that that's not what's happening whatsoever. But you do have this very powerful tool available to you to send messages to the subconscious stuff that's going on.

Jackie Baxter  36:28  
Yeah, definitely. And it's really interesting, something you said just then about doing a training course to do with your health. And it's quite interesting, you know, up until I got ill, I had this like, utmost faith in the medical profession, which, probably not really justified. But you know, you put them on pedestals, don't you, you know, you go to your doctor, and your doctor makes you better. And then you come across this illness where you go to your doctor, and your doctor has no idea what to do. And some of them are helpful, some of them are unhelpful, but you know, none of them know what to do. And for me, the things that have helped me the most have been the things that at the start, I would have completely kind of poo-pooed, you know, yoga, whatever, you know, wild swimming, well you know, it sounds fun, but it's not going to make you better. But actually all of these things - breathing, even, you know, like, how can you breathe wrong? Well, actually, you can breathe wrong, you know, it's all of these things, that really do seem to be incredibly powerful.

Johanna Rayl  37:29  
Yeah. And I think that's also a good segue into another big lesson from this, which is just thinking about what it means to be healthy. And like I said, at the beginning, I think in many senses, I was like a quote, unquote, picture of health, all my life, even at the point where I got the COVID infection and had been suffering extreme anxiety for two years. And I look at that, so much different now. I think my habits in work and exercise, while they made me incredibly fit, were fit for like, performing really well, were not necessarily the most healthy. And then I think mental and emotional health deserves a much bigger place in our in our picture of overall physical health. 

Because I think one of the biggest lessons from having long COVID is that there's like no such thing as the mind and the body as separate entities, they're a completely one and the same. Just the fact that I was able to heal a physical illness, in large part, with a mental approach is proof of that right there. 

It's strange to say this, and I think it could be completely infuriating to someone that's in the thick of it. But right now I'm in a place where I'm like, grateful that this whole journey happened, and that I have a completely different definition of health going forward, because I think I had to learn that - if it didn't show up in getting long COVID, my beliefs about what health means and the value of hard work and pushing through it would have shown up and in some other way in my life in a big way.

Jackie Baxter  39:26  
Yeah. And it was a pretty tough lesson, maybe. But it does sound like you've probably come out of it a lot healthier than you went in maybe?

Johanna Rayl  39:35  
I think so. Yeah, I definitely feel that way. I think I also have a lot more clarity about what I want out of life, sounds a little bit cheesy, but I think it's true. I've rethought a lot of career goals as a result of this. Really like a few, probably three months into recovering, there, I just felt a very rapid mental shift in the way that I viewed my work and a lot of prior values that I held. And I think it's amazing that that kind of learning was able to come out of this.

Jackie Baxter  40:13  
I've definitely noticed, you value different things. I think I certainly took my physical health kind of for granted before. And, you know, now having been ill for a long time and not being able to do the things that I just took for granted before. When I recover, I'm gonna say "when" - I don't think I will do that anymore. I think  you do change? What's important, I guess.

Johanna Rayl  40:44  
Yeah. I mean, it's an amazing place to be in to appreciate a lot of the things that you weren't able to have in that time period. I think, for me, the emblem of this is like this, I live half mile away from Lake Michigan. And it's just like the perfect 15 or 20 minute walk to go there, look at the lake, come back and take a break from whatever I was doing. And that was like something I could do on like, a great day, when I was super sick. And this past summer this idea that I could do that, like, I don't know, three times a day if I wanted was like, so amazing. And it just holds a much different value than it ever could have before.

Jackie Baxter  41:35  
Yeah, definitely. Do you have any sort of advice to people who are still suffering? And obviously with the caveat that everyone's different, and you know, this isn't medical advice or anything, but or maybe you know, what do you wish that you'd known?

Johanna Rayl  41:51  
Yeah, I recently wrote up like, eight pieces of advice for something on this. So I'm going to try and recall most of them,

Jackie Baxter  41:59  
I can put a link to that as well.

Johanna Rayl  42:01  
One of them is definitely to not set recovery deadlines, I think it was tempting, when I took that leave to say, I'd really like to be back for the next academic quarter, or like, back in two academic quarters from now. And to some extent, you know, some of this has to happen just for life planning purposes. But I think the more pressure you have to have your body achieve a certain amount of healing by a certain time, the more you're just sending this signal to your distressed nervous system that it needs to continue being distressed. Because your body can't trust you to give it the rest and healing time that it needs. 

I think another big thing is to start learning about the role of emotions in the push and Crash cycle. And I think really, that just means like, compassionately noticing them and giving space for them, and trying to notice how the grief of feeling worse sometimes might get masked by you know, blaming yourself for doing too much. I think really getting to like, the underlying, most painful ones, which are often behind like, you know, anger or blaming yourself, or whatever it is there's, there's like easier emotions to feel. And then there's like the really deep painful ones, which is just like this is so unbelievably hard. Noticing those and giving compassion to those is super important. 

And then I think along those lines, understanding all of the fears that you have surrounding your illness is especially important. I'll give you the link. So you can post this as well. I learned a lot, again, from this Curable app, which has like a team of neuroscientists that study, you know, chronic pain, and there's, well, I think there's not so much research in this area related to fatigue. There's a very strong understanding of the relationship between the intensity of pain and fear about that pain. I mean, this is an incredibly scary experience, like we all have an enormous amount of fear for sure surrounding it, especially without much professional medical guidance. So I think a big part of being able to even do these brain retraining and reframing methods. - a lot of it is like learning to recognize just how much fear you're experiencing surrounding all these symptoms, and what you can do to soothe that and begin to see them in a different light. 

One other thing is exercise, I had a really hard time understanding what should be or could be the role of exercise in getting better, I think many of us that have been prescribed physical therapy or been told to just try doing more know that it can really backfire. And then I think so many of us were also like, formerly athletes of some kind or very active in whatever way. And so exercise can be a very loaded word, I feel. And for me exercise meant like, doing something for a certain amount of time and getting enough of a workout in and it was so tied up in like all of the competing and achieving that I've done in those areas. And I found that with any of that attached to exercise, it had no role in my recovery, and I tried to completely reframe and just try to do movement, and movement for me meant it had to feel good, like if it doesn't feel good, then it's probably not helping. And to find movement that feels good on a day with extremely low energy, that could literally mean like stretching your arms overhead, or like laying on your back and moving your knees from side to side. If that's what feels good, then that's good movement to be doing. And I think it was super helpful to just like throw exercise out the door for a while and build this like new relationship with moving my body. 

I really hope that we can take all of this at least qualitative evidence for Dysautonomia-centered approaches to long COVID and CFS and use them to ask more questions, because I don't see another area with nearly as much promise as this has right now. You know, not that I'm a professional in the area at all. But it's pretty astounding to me some of the recovery stories I've heard from this kind of approach. I wish I could say I felt really optimistic about, you know, mainstream medical care for long COVID and CFS. I kind of don't for the near future. But I think this is where we should be looking, really. 

Jackie Baxter  47:56  
Yeah, it is really interesting. I mean, all the recovery stories, you know, people that I've spoken to who have recovered, it's all been using this sort of route, you know, the calming your nervous system, but also some element of the way your thoughts can influence your symptoms as well. Because like you say, you know, they are all so connected, aren't they? So yeah, yeah, it's really interesting, isn't it? 

Well, thank you so much for chatting to me today. It's been really inspiring. I think you've been really helpful for me personally, but I'm sure for everybody else listening as well. So thank you so much, and yeah, all the best for the future.

Johanna Rayl  48:39  
Thank you so much for having me. This was a lot of fun.

Thank you so much to all of my guests, and to you for listening. I hope you've enjoyed it, or at least found it useful. The long COVID podcast is entirely self produced and self funded. I'm doing all of this myself. If you're able to please go to buymeacoffee.com/longCOVIDpod to help me cover the costs of hosting the podcast. Please look out for the next episode of the long COVID podcast - it's available on all the usual podcast hosting things and do get in touch - I'd love to hear from you.


Transcribed by https://otter.ai