107 - Raelan Agle - the Importance of Sharing Recovery Stories

Episode 107 of the Long Covid Podcast is a chat with the fabulous Raelan Agle who has recovered from Chronic Fatigue Syndrome and is passionate about sharing both her own recovery story and those of others.

We chat through her own recovery and some of the themes and highlights of people she has spoken to on her channel. This is so full of hope and excitement and was a genuine joy to record.

Raelan's YouTube 

Raelan's Instagram

Raelan's book - Finding Freedom: Escaping From the Prison of Chronic Fatigue Syndrome 

For more information about Long Covid Breathing, their courses, workshops & other shorter sessions, please check out this link

(music - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter  
Hello, and welcome to this episode of the long COVID Podcast. I am so excited to welcome my guest this evening, Raelan Agle, who is an author, YouTuber, MECFS community builder, who's passionate about sharing recovery information with others. So we are going to be talking about all sorts of really exciting things today. A very warm welcome.

Raelan Agle  
Thank you so much for having me. I'm so honored to be doing this. I'm a big fan of the work that you're doing. I am so grateful that you're out here doing what you do, and just excited to be a part of it in any way I can. So thank you. Thank you for having me here.

Jackie Baxter  
Oh, thank you so much. This is gonna be really fun. Maybe to start with, would you mind just saying a little bit more about yourself? And what maybe explain what I just kind of said, in a little bit more detail. 

Raelan Agle  
Yeah, I've been sharing my story quite publicly for a while now. So I'll do the fast version. I - well actually grew up with a mother who was chronically ill, and she was diagnosed with chronic fatigue syndrome. So for most of my life, she got sick when I was about five years old, until the day that she passed away, she was unwell. So chronic fatigue syndrome was a really big part of my life for as long as I can remember. 

And then, within about a year of her passing, I got really bad flu, I was really rundown, I've been doing a whole bunch of traveling, and I got this crazy flu that laid me out. And essentially, I just didn't get better. It kept getting worse and worse. It was a bit cyclical in the beginning. I'd think it was getting a bit better, but then it was like it was coming back. And then the whole usual story that so many people who have gone through this, I know can relate to, in that I went to my doctor, all the tests came back normal, it was a frustrating, scary thing. 

And even despite knowing that my mother had chronic fatigue syndrome, and I should have recognized it right away, I was so determined to never end up like her, her life looked like - I'm hesitating because I don't want to say it - her life was hell. I thought her life was hell, you know, let's not always sugarcoat this, we can have good quality of life with these conditions. And it doesn't always have to be hell. But sometimes it really is. So I just somehow thought through sheer determination and stubbornness, that I would never get that illness. 

But eventually I did come to terms with the fact that this is what I had. And I lived with it. It was more severe in the first couple of years where I was mostly house bound, a lot of my time, most of my time in bed or on the couch. And then I did improve somewhat to a more mild state. But I was still sick every day, every single day was a struggle, just a big balancing act with a lot of pushing and crashes and all these crazy symptoms. And this went on for about 10 years before I finally fully recovered, which was about I'd say four-ish years ago now since I've been fully well, back healthy again.

Jackie Baxter  
Yeah, I mean, I personally can relate to a lot of what you've just said. And I'm sure many people listening will as well. You know, this, you know, unpredictability, even the sort of like almost denial that that's what it is for a time as well. It's like, oh, no, that's a scary word. You know, people were talking about things like chronic fatigue syndrome, when long COVID started to become a thing. 

And you know, it was this thing where you think That's like a life sentence almost. You don't hear about people getting better. So it was almost like, oh, I don't want that to be me. Let's, you know, keep doing all the wrong things, because that's definitely going to work. So that was a whole another thing. 

Are you able to talk a little bit about, you know, the things that helped you and how you did manage to fully recover?

Raelan Agle  
Yeah, absolutely. It was such a journey. Such a learning process, so much trial and error. I went through kind of two phases with this. The first about two years, when I was sick, I threw everything I had at it, and spent a ridiculous amount of money on tests and treatments and supplements. I was taking about 100 pills a day of supplements that my integrative doctor had recommended. I was just doing so many different things, anything you can think of within what a conventional medicine, alternative medicine, I think in that first couple of years, I pretty much did it. 

I was doing antivirals, heavy doses of antibiotics because they suspected chronic Lyme disease. I was doing hormone replacement therapy. I was doing, you know, saunas and dry skin brushing and meditating and green juice and detoxifying my house and getting mold testing and just so many different things. I cleaning up my diet completely. You know, every bite of food that went in my mouth is organic. 

So in the first couple of years, I saw some improvement. I don't know how to put a number on it. I used to say I improved by about 50%. But I don't think that's accurate. I think it was less than that because I still was really struggling. And because I did so many things at once, I was never really sure what kind of got me that partial recovery. 

And then I stayed at that level for quite a few years and then got fed up and kind of went all back in and healing again. But this time I wasn't seeing doctors, I wasn't counting someone else as the expert, I'd seen so many doctors, I'd read all of the books, literally hundreds of books, you know, watch the videos, all of that. I kind of felt - and I no longer think that this is true - but at the time, I felt like I learned everything there was to learn. So I just like there's nothing else out there for me, this is gonna have to come from within. 

So I kind of looked at the things that had shown promise over the years. And you know, what I believed or what I now understood about my body and how it healed and I sort of put together my own recovery program from that. And it included things like diet, and healing my gut, my gut health was in really bad shape. So I did things like really upped my plant foods, I did intermittent fasting, I did juice fasting, I started eating fermented foods to get all those naturally occurring probiotics. 

And all of the things that I've learned over the years about how to help your body to naturally thrive, this is what I was trying to do, because I really believed that my body had the ability to heal itself under the right conditions. So I started doing a lot of those things that we - many of us discount because they seem too simple to really help with an illness that is so significant. 

But I started making sure I got sunlight every day, spent time outside, I really prioritized sleep, my sleep was absolutely horrendous. So this was not an easy thing. But my motto was sleep at all costs. Because I came to learn about what happens when we're sleeping and how important that is to healing. I started working on my stress, you know, things like therapy, journaling, meditating. 

One thing that I didn't give enough credit at the time, but I had started dating my now husband, and him and I moved in together and I had so much love and support from him. So I had a healthier environment. And a lot of that loneliness and stress and anxiety kind of went away. 

And I started exercising. And exercise probably isn't the right word to describe it. Because I could barely move - I had really bad post exertional malaise. And for years, I tried little bits of exercise. And it always made me feel worse. So I was quite scared of it. But during those years, when I wasn't really totally actively working on my recovery, I saw certain instances where I was traveling a bit, and I would be, I pushed my body a little bit. But in a situation where I was really happy, really comfortable, really enjoying myself, like maybe just pedaling a bike around some flat streets in a little town or started doing some scuba diving, which isn't super strenuous. But still a lot for me. I never would have believed that I could do these things or maybe walking longer and longer periods of time while sightseeing. 

And I could see that I was getting better as I was doing it. I could do a little bit more like the next week, the next month it was accumulating, it's just that with all the other things in my life, and all the other stresses, whenever I tried to incorporate exercise on top of that, then I'd feel worse and I crashed. 

So in the end, this was a big part of what helps me - I started with just one minute, a day, or every second day sometimes. And it was really gentle not in a gym, it was just in my living room, I say some you know, push ups off my wall, or maybe some gentle squats, just some kind of movement. And then every week or so I upped it by about one minute. 

And this really helped me and within a year I was doing our long strength training workouts at the gym at full intensity, not holding back, just really pushing and I was completely fine and no post exertional malaise. 

So it was really kind of a combination of supporting my body, slowly incorporating movement, really working on the mindset and the mental health and the stress component. And somehow, they seemed to kind of all work together and helped to slowly pull me out of this. And there was no one thing I did to address specific symptoms, just as I slowly started to recover all of those symptoms started to dissipate, and eventually got to a point where they were completely gone.

Jackie Baxter  
Yeah, I mean, that's absolutely fantastic. And I loved what you said about the body's sort of natural ability to heal, if you put it in a place where it can do that. And I think that's just such a powerful thing. And, you know, in my own experience, looking back to what I was doing before I got long COVID, was not a good environment for my body, you know, I was stressed, I was doing you know, just all of these things that we now know were really really harmful. But I would have said I was completely fit and healthy. And then you know, quite obviously wasn't. 

So it was trying to then you know, kind of undo some of those things. But you know, when you're incredibly unwell, it's very difficult to try and do quote unquote, all the right things, because you don't even know what some of them are to start with. So it's definitely a bit of a process, isn't it? 

What was your kind of like - did you have an aha moment where you went, Oh, my goodness, I'm recovered? Or was it more of a kind of gradual kind of trickle towards that moment?

Raelan Agle  
it was definitely more gradual. And just to comment on what you said about you know, when I tell my story I'm trying to tell the fast version because we've all heard these stories quite a few times. But I, you know, I say I got a virus and I never got better. But like most of us are, many of us have come to understand, I look back and I was in a really bad state, it was kind of a perfect storm. And that to me, now I see that virus as the final straw. You know, lots of other people I'm sure got that virus and recovered, but why didn't I? 

And I had been an over exerciser, I'm really not taking care of myself, high, high stress, high anxiety. So yeah, I definitely see how my body was not in a good state, even though I probably would have told you at the time that I thought I was perfectly healthy. 

And then when I did work on my recovery, I had a couple points where I thought, Okay, I think I'm here, I think I'm recovered. It wasn't like one day I woke up. But you know, let's say at the point where I was doing hour long workouts, and I was fine, I think, Okay, this has got to be recovery. But then I used to be a runner. So I started trying to run again, and I noticed those symptoms coming back, I could feel that post exertional malaise, just with little bits of running. 

And it was interesting, because being able to push hard for an hour in the weight room, you would think would equate to being able to run for five minutes outside, but I couldn't. So again, I'm like, Okay, I'm not fully here yet. And I found this a few times, every time I tried to layer on something new that I hadn't been doing before, my body pushed back a little bit. Or now I believe it's more my brain and my autonomic nervous system were pushing back a bit. And there's a lot of brain training in there I think, that I didn't realize what's happening. 

So I don't have a specific date. In the end, I'd say that last kind of all in when I decided, Okay, I'm going to overcome this. I think about two years from when I first started until I was like, Okay, I've added in everything else I'm running and working out. I'm traveling and working full time I'm doing all the things and nothing causes symptom flares or any of that. So definitely a gradual sort of coming out of it for sure.

Jackie Baxter  
Yeah. And, you know, this is something that's happened much more recently for me. And something that was just so amazing for me was realizing that I could behave like a quote unquote, normal person. So I could do two things in one day and not worry about it. And it was this kind of like, whoa, the world has opened up in front of me kind of feeling - it's almost quite overwhelming, it was for me anyway,

Raelan Agle  
I think because it was so gradual. It would go back and forth. You know, and I believed so strongly in my recovery, despite evidence to support that belief. I don't know where it came from, just sheer stubbornness. But yeah, I just really feel like I embraced those days when they came. 

And I tried to find this balance between gratitude for Oh, my goodness, look what I can do today. But also just not getting so caught up in it. I didn't want every new good experience to be paired with something bad. Like I couldn't do this before. Remember how bad it used to be. So think it's a bit of a juggling act between the two. But I really just tried to kind of look forward and focus on putting the stuff down, leaving it behind me and just embracing everything that was coming back to my life as normal, and what I should have.

Jackie Baxter  
Yeah, that's amazing. And that's, it's such a fantastic feeling. So how did that kind of lead you into what you're doing now, and the YouTube channel and everything else?

Raelan Agle  
Again, it's something that's been a bit of a gradual journey. But when I was coming out of it, it was even before I was fully recovered, I was close, I was probably at the hour long workout stage. I'm like, Okay, I'm here. Everything that I'm doing is working, I can see the trajectory that I'm on, there's no reason to think that I won't fully recover, like the evidence is there now to support it. I'm seeing it week after week, month after month. And like, I'm actually going to come out of this, like I'm actually coming out of this illness that I watched pretty much destroyed my mother, that everything I read online tells me you're not going to come back from. 

And by this point that I recovered, or had almost recovered, I'd only heard of one other person who had recovered in all of my reading and all of my research. And clearly there were more I just didn't know they existed. So I just thought, I have a story to tell. And that 10 years with my illness was such an insane growth and adventure journey. It was horrible and amazing. You know, kind of all at the same time. I ended up moving to Southeast Asia. I lived there for eight years. It's where I was when I recovered. And I just done so many incredible things. 

And I just thought, wow, I got past this. I'm in this whole other place in my life, I have to tell this story. So first, I wrote a book, which was way harder and more work than I anticipated it to be. Wow, that was a labor of love. But I just did it in two parts. The first part was just telling my story, what it was like being sick, getting sick, going from being this incredibly active person and then having that all stripped away. And then the second part, walks through what I did to recover. 

And then I put that out there and then I realized as an unknown author, nobody knows the book exists like. I just I really wanted to get the story of hope out there for people. So then I just started thinking, what else can I do? And I knew, you know, Instagram was popular and YouTube was popular. So I started in a very terrified way, getting into these spaces and sharing my story. It was so scary. So, so scary, but I just kind of fumbled around and started making videos. 

And then from there, I really quickly realized that my story wasn't anywhere near enough. And the biggest thing that people were telling me was not that Oh, thank you for sharing your steps to recovery, this is the magic here, that naive Raelan might have thought at one point. But it was more like, Wow, thank you for the hope. So I thought, okay, there got to be more people that recovered. I've just, I gotta get their stories out there, too. They might not have YouTube channels, they might not be sharing their stories. So I just started looking and I didn't think I'd find that many people. 

And there's so many. It's incredible. I can't keep up. I just, right now I'm booked about six months out on my channel for people. I just, it's incredible. It's amazing that there are people recovering all over the world, and just so excited to get their story out. So it's just been growing from there, just trying to get as much information, as much stories, not filtering it anyway. Like how whatever worked for you, whatever your insights are, let's put them out there. So people kind of have this buffet of information and options to choose from.

Jackie Baxter  
Yeah, I mean, it's it's incredible, isn't it? I mean, I think the hope, I mean for me, certainly, the hope was so important, because, you know, I got sick. Initially, I thought it was just me. And then I found out it wasn't just me. And then I found out that Oh, good grief, there's like millions of us, you know, and there was some sort of solidarity in that. But you know, everyone was sick, no one was recovering. And it was kind of like, well, is this forever? I don't think I can ever accept that. But I was just flailing trying all the wrong things. 

And the first person I spoke to who had recovered was about 18 months in. And it was quite a big moment for me; it was someone I interviewed on the podcast, and she said, I've recovered from long COVID, I could come on your podcast. And I was just like, What do you mean, you recovered? I didn't even know that was possible. So yes, yes. Come on, come on, come on kind of thing. 

And it was after speaking to her that I really thought Okay. This is clearly possible. If she can do it, then so can I. And okay, it took me significantly longer than she did. But it was once I realized that it was possible. That was just such a huge moment. And I just, I think maybe that that hope. And that belief in recovery is quite important to recovery. Certainly that was my experience.

Raelan Agle  
I think it's the most important part, because it is such a tough thing to go through. And we have so many ups and downs. And we get laid out over and over and over again. And we have to keep picking ourselves back up and finding that will to like, Okay, I'm going to try again, even though the last 12 things I tried didn't work. Other people said they would work. It didn't work for me. 

And having that hope. And I think just the number one thing that you need to do in these conditions is never give up. And the way that you never give up is by holding on to that hope. And I think the best way to hold on to hope is to keep hearing the stories of other people, like yourself, to keep cementing that reality that recovery is possible, like okay, let's do this. We can do this. Let's pick ourselves up. Let's try again, let's keep searching. Keep going.

Jackie Baxter  
Yeah, yeah, and because everybody's story is subtly different, then, you know, listening to one is probably not enough, because it's not going to be a carbon copy of your story and in your recovery. So, you know, my own recovery has been a massive patchwork of all sorts of people's with a bit of my own spice thrown in. And I think that's probably how it's gonna be for most people. So that's why these resources are, I think, so important.

Raelan Agle  
Yeah, I think it's good. It's good to have a mix to take in, I think, as many as you can. Because even me still I learned things from everyone that I do, I think there's always nuggets of helpful information in there. And then people also sometimes tell me, you because they're going to be ones that really resonate for you specifically. And they'll bookmark those ones. So they'll come back to those ones on their bad days, because they know it's a surefire kind of pick them up. And then, you know, on the days that they're ready to take in some more stories. 

And it's been interesting on my channel, because my channel was all about chronic fatigue syndrome, or ME, and of course, we started seeing the overlap of long COVID. But initially, I thought, no, who am I to speak about long COVID? This isn't my story to tell, this isn't at all, you know, my area. But so my audience was growing, and so many of my viewers now were facing Long COVID. And I was getting almost frustrated. messages from people, like when are you going to start telling Long COVID stories? 

So, you know, it's been a silver lining of sorts that our communities have come together and are helping each other out. I think we see definitely that there's way more benefit coming from us working together than doing this separately, even though things might not always be exactly the same. There's so much overlap. So many things that are helping long COVID are helping people with MECFS. And vice versa. So yeah, it's been quite the interesting last couple of years for sure.

Jackie Baxter  
Yeah, yeah, definitely. And, you know, I think again, yeah, what you just said about the communities working together. I think, by and large, you know, the two communities or the many communities do support each other. You know, and I think it tends to be sort of more isolated incidents where it doesn't, but, you know, it's this kind of stronger together. And, you know, maybe long COVID people at the moment might have the kind of more of the media spotlight, and more of the kind of strength in numbers all at once. 

But the ME community has the sort of experience over time. And, you know, if I actually had listened to the ME community at the start, then I maybe wouldn't have done so many of the wrong things to start with. So, you know, I think there's so much learning there that can be shared. 

But you have obviously interviewed, I don't know, hundreds of recovery stories, probably? 

Raelan Agle  
over 100. 

Jackie Baxter  
We've just said, you know, that that everyone's story is going to be different, but are there like commonalities between stories? 

Raelan Agle  
Yeah, absolutely. And I always, you know, put this out there, of course, you know, this is just my observations. This isn't scientific study. I'm just, you know, listening to stories, and just my own observations, my own themes that I take away from this, you know, someone else watching these stories might pull away slightly different themes. 

But it was really interesting when I first started doing it, because, you know, I've seen that as a whole, our community, our understanding of these conditions is growing together, you know. Where we were, I think my first interview I did was three and a half years ago. So even in that time, we've had a dramatic leap in our understanding of what's going on. So in the beginning, the recovery stories felt all over the place. And it was really exciting. My husband would always ask me after like, how did they recover? 

And it felt like I had all these wild and wacky answers. One person told me it was through Cambo, that frog poisoning, she went into some jungle in a Thai, like a Thai jungle with some shaman and she did these rounds of cambo poisoning, they put it in your skin, and you get violently ill. But then after that, she was completely cured from I think, I don't know, 15 or more years of being severely unwell. 

You know, I, when I recovered, I switched to almost a completely plant based diet. And that worked really well for me at the time. And I had read a lot of information about this, I'm now no longer plant based. And I've talked to people who have recovered using all sorts of diets. But at the time, I really still was in that mindset, and I interviewed one woman who was completely carnivore, which wasn't something we were talking so much about, even three years ago, I'm like, You don't eat any plants? Like my head was exploding. But for her, she had some kind of plant allergy in here that was histamine thing or whatever. I can't explain it intelligently. 

But so yeah, my point being that they used to seem a bit all over the place, but then it didn't take long, I'd say after about a year, where my husband just stopped asking, because my answers just always kind of came back sounding like one version of kind of the same thing that people were saying. 

They're kind of three components that people potentially address, from what I've seen, one that everybody addresses - one or two are pretty closely related, but everyone seems to have to address some thing where they, whether they knew they were doing it or not, but address their nervous system, that whole fight or flight, you know, getting rid of that fear response to symptoms to life, and to get themselves in a good place. 

So that looks different for all different sorts of people, like some people would tell me that they got better, because they quit their stressful job or got out of a stressful relationship. And then they recovered. And at the time, I didn't understand the connection. But over the years, I've started to see these connections between them. So most people have had to address that stress element, that fear, that panic in some way. 

And then the second thing, which ties directly into the first, as many people are saying that they have incorporated some form of their recovery program that addresses the neurological aspect of their symptoms. So whether we call that brain training or not, but there's a lot of things where people are just working on those neural pathways in the brain, and creating new ones and getting rid of those ones that are not helping them and maybe causing some of these symptoms. 

And then the third thing that people some people address, some people don't, is the physical symptoms. So some people do have, you know, mold exposure, heavy metal buildup in their body, or maybe diet changes, they need to make gut health changes and they find that that, you know, in conjunction with these other things is kind of just different puzzle pieces coming together. But not everyone I talked to has to address those physical things outside of the nervous system and the brain. Many people I talked to really only addressed the brain and the nervous system, and they completely recover. Whereas others have those other components. 

But some of these people are saying, you know, my diet was fine, I'm in good shape, my gut health is fine. I don't have heavy metals, I did all the tests. So many people I talked to say, I did all the tests, you know, 1000s, and 1000s of dollars worth just everything and everything comes back fine. And they're actually finding that what it looks like is that their body was fine. That's why the tests were normal, it was just not a broken or a faulty brain or nervous system, but just one that's become hypersensitive. And just is not something that evolved to really function in our modern crazy world. So it was just a calming of the nervous system, working with the nervous system, working with brain training, and they were able to fully get past it. 

So these things that we look back like, or, you know, we see a graded exercise therapy worked well for some people, works terribly for some other people. That again, when I looked at my own recovery, and that component of exercise, it really was like a gradual re-exposure therapy to life, just slowly, one minute at a time showing my body, my brain, my nervous system, that exercise was safe. Because that little bit of, you know, arm circles for a minute, isn't what was making me well, it was just getting rid of that fear response, I believe now, that made it well. 

So yeah, kind of the short of the long is, I definitely do see themes now. Absolutely. To the point where I'm doing interviews, sometimes I think, should I even keep doing these? Is there even a point? Like everyone's just saying the same thing over and over again, which is so incredible, because before it all used to be so confusing, and now we're like, okay, there are some solid things that are at least working for some people. We don't know yet if they work for everybody, but we're definitely learning. 

And I do think we do need to keep telling these stories. Because the more we hear them, the more we think, okay, maybe, maybe there is something to this, because it's way outside of societal thinking, most of this information has not trickled down to our medical doctors offices, even though a lot of it is firmly established, or at least some of it in the scientific community. So yeah, it's been fascinating, absolutely fascinating, over the last few years, just watching our understanding of this of evolve.

Jackie Baxter  
yeah, I mean, I would completely agree with what you've just said, because, you know, I mean, it's like, I was a bit of a guinea pig. But you know, it was, it was exciting to be a guinea pig, you know, and to be like, well, I can experiment on myself with all these things, which, you know, didn't always work. But it was, you know, I've always been an answers person, you know, I've always wanted to know why. And I've wanted to know what, and I've always got a million questions, which is, you know, not always a good thing. 

But it was once I kind of started to understand about the nervous system, you know, my nervous system, putting it back into balance, kind of sorting stuff out kind of stuff, was never going to be exactly the same as other people. You know, I love cold water. Other people would not be into that. But some people like the idea of acupuncture, which really doesn't appeal to me. So it's like, like you were saying, you know, that there are themes, but the way that people are going about doing those things is different. And maybe that's why keeping telling the stories is so important. Or one of the reasons why it's important.

Raelan Agle  
Yeah, yeah, absolutely. And even though I, you know, I say I keep hearing the same thing over and over, it never is exactly the same. I still do firmly believe everyone's got their kind of unique path to this. But I also believe at the same time that there's so much to be learned, especially if you can be open minded to the information, and just kind of trust your gut, on what resonates for you. 

Jackie Baxter  
Yeah, I mean, yeah, that was a thing for me was, you know, I think before I got ill, I would, you know, have all the things that helped me, I would have dismissed them out of hand, you know, cold water, that doesn't sound pleasant or healthy in any way. And yet it was one of the biggest things that I found to help me and, you know, doctors didn't help me. They might have been sympathetic, and, you know, kind of like, Oh, if you think it's working, keep doing what you're doing, kind of thing. But, you know, it really was kind of being open minded to stuff and thinking, Well, is it going to harm me? If it's not going to harm me, maybe I'll give it a go. And well, given what I started off trying to do, that was pretty harmful to start with...so..

Raelan Agle  
What does that even mean? Yeah, it's so in the context of it. Yeah, cold water was massively helpful for me to I still do cold showers. I do ice baths now. Every week I yeah, it's been massive, and a lot of people have shared but yeah, for other people, that's definitely not going to be a thing. And I always say, you know, I would never say disregard medical advice or don't go to a doctor, I think it's really important to go through that just to get all those tests and to rule things out. 

But when everything's coming back fine, and they have no more answers for you, that's one of many Silver Linings is it empowers us, and shows us that we do have more control than we think and that, you know, I've started thinking now of doctors as consultants, you know, I'll get their opinion I might get another opinion. But I used to think of their word as gospel, and I just had nothing to offer to the equation and I would be nervous and scared even sitting in a doctor's office. That power imbalance for me felt so massive and just I did, I felt like I had such a small voice. 

And to get to this place now where I'm like, Yes, I value your training, your expertise, your experience, but I'm taking all that in. And then I'm deciding what to do with it, I make the final call so. And to realize that, I used to think that I was just this sitting duck where any illness could take me down at any time. And of course, there's elements of that that has some truth. But we all have way more control over our health than we were brought up to believe. 

So it's nice to come out the other side of this as a much more confident and empowered, knowledgeable person in life for how to take care of your mind, take care of your body. It's a hellish thing to go through. But I think those of us that say it's a gift, at least for me, that's what I mean. Because I don't know how I would have got to be this person that I am now, had I not gone through this growth bootcamp, forced into this growth bootcamp.

Jackie Baxter  
Yeah, yeah, that's really interesting, isn't it? You know, it's like you wouldn't choose to go through it. But having been forced into that position, what are the positives that you can take from it? What can you take forward into your life that you now have? And all these options and all these choices? Again, yeah, that's that's kind of how I feel. It's an opportunity, maybe. 

I mean, I was going to ask you, if there were any kind of like, really wacky off the wall things? And actually, you already mentioned a couple of them. Was there anything else that jumped out at you as like, whoa?!

Raelan Agle  
You know, and the really, really crazy kind of outliers, there weren't so many, like I said, I think the frog poisoning and the carnivore diet, initially, were really nuts. Although my husband does a primarily carnivore diet now. So it's become very normalized to me. But it was more just kind of, I think, the different ways that people find kind of that way to calm their nervous system and calm themselves down and to get themselves into that healing state and to create those new neural pathways where they are not responding to their life through a lens of threat, and dialing down that over sensitivity. 

And the things people share are things like, one woman gave massive credit to the squirrels in her backyard. They're just a really big part of her recovery. She would feed them every day, and just spending time outside with the squirrels was massive for her. You know, so people have all of these seemingly insignificant things you would think and things that, you know, I used to when I started doing these interviews, almost cringe when I'd hear people sharing them, because I think I know we have severely unwell people watching these videos, and they did not tune in to hear about squirrels. I can feel them turning the video off and getting ready to leave their unhappy comment. 

But it's actually not the case, that most people are really resonating with what people are saying about just finding these ways to get joy back in their life and to get peace back in their life. I interviewed someone recently, again, I got a bit nervous about putting this out. But she said, I have something that I haven't heard anyone else say and it's that my life is so much better with chronic fatigue syndrome than it was before I got it. And I just thought, WHAT?! We can't say this. 

But the way she described it, she said my life was hell, it was chaos, you know, like working multiple jobs, working myself to the bone, high stress, high anxiety, high expectations for myself, so many responsibilities, not feeling like I had any rights to have boundaries, or to take a breath or to take a vacation. And now and you know, she admitted she's not in the you know the very severe category, she's not bed bound. So it's not saying that anyone should think what she thinks. 

But she's saying I get to take care of myself, I got to quit this horrible job that I hated. I'm my brother took me and I'm living with family. My whole focus right now is on learning how to take care of myself, on meditating, on just self care. So, you know, I don't think she or anyone is saying they want to be sick forever. But it's just hearing those different perspectives on how it's changing people's lives and how they are working, what tools work for them to come out the other side of this.

Jackie Baxter  
Yeah, and I suppose that's the beauty of everyone being their own person and having their own story, is that everybody is going to be different. And some people are going to be more different in whatever direction, but it's still their story, and it's still valid, and people I guess will still resonate with it, or some people will. 

Raelan Agle  
Yeah. 

Jackie Baxter  
So I mean, like, what would you say to somebody who is towards the start of their journey? Maybe they're not really quite sure what's going on or they're sort of struggling to find things or you know, that sort of slightly flailing kind of zone? What would you say to them?

Raelan Agle  
When I think about this, I think what I would have said to myself when I first got sick. Or what I wish someone would have been able to say to me, is that, and this is, again, I don't want to say that this is going to be anyone else's experience. But from what I went through, this was my reality. 

And this is the message I would have wanted to hear be - that this is going to be absolute hell, like you're gonna go through suffering, like you maybe have never gone through before. And at times, it's going to feel very lonely and like nobody understands. And it's going to feel strange how your life has been ground to a halt, and everything else around you just seems to keep going. And it's going to be shocking how few answers there are, and the conventional medical system is probably going to let you down massively, not because it's bad, but just because the people there don't have the information either. 

There will be good doctors, there will be less good doctors, who might judge you, who won't believe you, who will gaslight you and make you feel like you're making this all up or exaggerating it or just not trying hard enough. But there will be other doctors who will believe in you. And even though they don't have the answers, they will be there to work with you. And that even though as you go through this, at many times, it's going to feel like nothing's changing, or like you're not making any progress; to really take those breaks and step back and get some distance from it all and see the progress that you are making. 

Whether it's you figured out things that don't work for you, that's massive, that's things that you don't still have to try, because you know they're not for you. And maybe you've just crashed again, or your symptoms have flared. And it feels like you're back at square one. But you're actually not because you've learned new tools since you first got sick, and you know how to better handle this. So you're never back where you started. So just stepping back and looking at that big picture and taking moments. 

You know, one woman I interviewed said, You got to stop every once in a while, it's like you're climbing a mountain. And if you're only focused on the peak, and how much farther you still have to go, it's really hard to be at peace with the journey and to keep going. But just stop every once in a while and look behind you. And just congratulate yourself on how far you've come. 

And know that it's going to be frustrating, because there's going to be things that have worked really well for other people, and you're gonna get your hopes up, and they might not work for you. And that's okay, but just to be compassionate with yourself in the process, because I think we can be really hard on ourselves at times when we're sick. Like maybe we're not trying hard enough, or, you know, some of us had these really overachiever type personalities. And we bring this into recovery. Like, it becomes recovery bootcamp, and it becomes the stressful thing. 

So just be patient with yourself, be compassionate with yourself and to trust yourself, that you know that whatever your gut is telling you, whatever your insides are telling you as you go through this, that has value, and you trust yourself to be able to see what resonates and just be open minded in the whole process, because you're probably going to have to start thinking about health in a whole new way. And people are gonna say things like the squirrels made them better. And it's maybe a bit frustrating. 

But just to do your best to be open minded and learn from the experience of others, because people are recovering. And every one of those recovery stories has something to offer. And you don't need to reinvent the wheel, you can take your pieces from here and there. And it doesn't have to look exactly like anyone else's story, but just work on getting your own puzzle pieces, and just have faith and just never give up. Just keep finding that hope and never give up, until you get to the place that you're trying to go.

Jackie Baxter  
Yeah, yeah, that's some really, really sound advice, I think. We've talked about this, you know, illness journey, and whatever, you know, that has looked like for each individual person, and how this kind of changes us. I don't think it's possible to go through such a big experience like this and not come out looking exactly the same as you went in. So I would love to just kind of finish on - How's it changed you? And maybe you know, what's life like now, for you?

Raelan Agle  
It is so radically different now. I could write an entire book just on that topic. And the temptation is always, I think, to, because there's so much good, and sometimes we paint this mountain climbing you know, happily ever after picture. And I think initially that's kind of what I thought it was gonna be, like I'm past my health problems. Life is easy now, everything will be perfect. And that's certainly not the case. 

But who I am now doesn't even recognize the person that I was before I got sick. My focus in life, knowing what I want and also feeling that I have the right to go after it. Like what is important to me matters, that I don't just have to do what everyone else around me thinks that I have to do. Having that kind of heightened priority of joy and adventure in life. Adventurous things are really important to me. So I now go after that. And I know that life can be short, unpredictable things can happen. So when you're in a space when you can enjoy life to absolutely go after it. 

And my confidence is completely changed. I used to be very insecure, very low self esteem, very high anxiety. I still have some anxiety issues. It's not completely gone. But it's dramatically different. I'm on a whole other end of the spectrum. And I have the courage to do things now that I wouldn't have done before. I feel so much more empowered. I think once you've gotten past something like this, it's like, wow, if I can do that I can do anything. 

And I used to have these kind of big dreams. But I used to think who am I to go after that? Who am I to do this? And I always dreamt of traveling more and living in different countries, but it really felt like an unattainable goal. And I've now so far lived in five different countries, I've traveled to dozens more, you know, I do this YouTube channel that old me would have been like, no, it's just way too vulnerable. Don't put yourself out there, that's going to be.... And it was scary. 

But it's also helps me to build relationships with people so much better. I think, once you've been through something traumatic, which this is, absolute trauma, you can connect with other people quickly, more easily. I think you have an ability to kind of cut through the BS and have more real conversations. And in time, I've learned that the more I talk about my story, the more it normalizes it and gives other people permission to do the same. Because every time I open up to someone about my journey, and I think it's gonna be oh, this big thing that they're not going to be able to relate to, and there's almost this relief, and then they share something with me, you know, that they've had to go through. 

So it really has been the most incredible changing experience. Changing experience? That's not the right term. But you know what I'm trying to say? It's just, I can't even. Yeah, it's a hard thing to even summarize, but I just, I guess that's another important piece that I'd go back and tell myself, or tell people who are watching that, It's not going to feel everyday like this Amazing. Oh, look what I get to learn today. But if you let it be, and if you can embrace it, sometimes this can really be a growth experience, and can really change you for the better. So it's tough. 

But if I had a magic wand, and I could take away those 10 years of struggle, as hellish as they were, and they got really bad sometimes, I couldn't take it away, because I know I wouldn't be anywhere near where I am now. And my excitement and hope for the future. I just I know that the possibilities are endless. I've already seen what can change in the short period of time, where am I going to be in 10 years? Where am I going to be in 20 years? 

And being sick, it can be hard to look that far ahead and see those things. But I really do you know, for those of you listening, chances are if yourself five years from now could tell you all that is to come, your head would explode. So it is just really is incredible what can come out of this despite the suffering.

Jackie Baxter  
Well, it is so wonderful to see you just embracing life and really living. It's absolutely wonderful. And your YouTube channel, I will make sure I put a link to that in the show notes. So if anyone hasn't come across it already, then definitely go and have a look at that. And thank you so much for joining me this evening. It has been such a pleasure chatting with you. So thank you.

Raelan Agle  
Thank you as well. This has been absolutely wonderful. I'm so grateful that there are more and more of us out doing this and working together, and just so much gratitude for what you're doing. So yeah, thank you for having me.

Transcribed by https://otter.ai