114 - Sarah's story of Long Covid Recovery

Episode 114 of the Long Covid Podcast is a chat with Sarah about her recovery from Long Covid. Sarah is a yoga teacher who is now teaching yoga classes to help people with Long Covid, as well as running her own podcast focused on recovery stories. 

We chat through Sarah's experiences, what helped her to recover and what life looks like now.

http://www.LearnitLive.com/longhaulyogi - regular Yoga for Long Covid Zoom classes online

Longhaulyogi.subkit.com - Yoga for Long Covid OnDemand content

Instagram.com/longhaulyogi - main social media 
Podcast: https://podcasts.apple.com/gb/podcast/long-covid-hope-podcast/id1667250841
Dr Myhill: https://www.drmyhill.co.uk/

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 delighted to welcome Sarah to the podcast this morning. Sarah is a fellow podcaster and a yoga teacher and a long COVID Recover-er, if that is a word. So we're gonna be talking about all sorts of things this morning that are super exciting. So a very warm welcome to the podcast today.

Sarah F  
Thanks for having me. I'm excited to be here.

Jackie Baxter  
You're probably feeling a bit like I felt on your podcast where it's like, Oh, my goodness, I'm on the other side of the mic. This is weird. 

Sarah F  
Well, because I've great, great respect for your podcast. I've listened to it for a long time. And I'm just kind of like, very delighted and grateful to be invited on, alongside a load of incredible interviews that you've had over the 100-plus episodes. 

Jackie Baxter  
Thankyou. No, it's so exciting to have you here. So would you say a little bit about yourself, and maybe what your life was like, prior to getting COVID? Because I've found that the story always starts a little bit before it, doesn't it?

Sarah F  
Absolutely. So yes, Hi I'm Sarah, I go by longhaulyogi, online. That's how people can find me. But I'm based here in Sheffield in northern England. And like you said, I am a yoga teacher. I also work in anatomy, publishing, and I have a podcast, the long COVID hope podcast. 

And yes, I caught COVID in the first wave in March 2020. And prior to that, I had a very full life. I was actually on maternity leave at the time. I'm a mom to a four year old now, but my daughter was a baby at that time. So I was off on maternity leave. And I guess to anybody listening from other countries, we get a year's maternity leave here in the UK. So I was taking that. 

My life was very full, obviously being a mum to a baby, and up all hours. And we I live on the edge of the Peak District National Park. And I'm very outdoorsy. So we would be going on monk walks hiking 10-12 mile and she would be in the baby carrier and to do all that. And was practicing yoga every single day, obviously, like a good yoga teacher would. And yeah, like, it was a very full and happy existence. 

But obviously, like in that spring, obviously we could see in the news that things were happening, obviously at first in China, and then it was in Italy, and it was very worrying. But I remember very well, like hearing on the news here that oh, there's not really any cases here. It's okay. So it was kind of like a weird moment. 

But I first got symptoms on the on Friday, the 13th of March, which a lot of people particularly in the UK did. Friday 13th unlucky for some, and yeah, that was really the start of it.

Jackie Baxter  
Yeah, it sounds like you got sick very much the same time as I did. But yeah, definitely not a lucky day for you, in this instance. But yeah, I can very much relate. Well, I mean, I don't have a small child. But you know, there's the sort of busy active life that I think many people with Long COVID had sort of experienced before. 

And then it was almost like a whole new world that you enter, isn't it, when suddenly you're not able to do things? Because certainly for me, I had never experienced not being able to do things. You know, if I couldn't do something, it's because I hadn't tried hard enough. This was a completely different thing. 

Would you mind maybe just talking a little bit through your kind of initial illness? And then maybe how that led into long COVID? Because I think that might be interesting.

Sarah F  
Yes, absolutely. I mean, I did have a quite a dramatic acute period when I caught COVID. I mean, we all caught COVID, my partner and my daughter too, so we all were feeling under the weather at the same time. And fortunately, my daughter was just - I was like watching her like a hawk, but she was just more tired and didn't really want to drink as much milk. So she was relatively okay, but it hit me like a ton of bricks to be honest. 

I initially could feel a tightness in the chest. And I think it just really went straight for like the lower respiratory system and really affected that. And within three to four days, I was really struggling to breathe. I was in so much pain in my chest. It felt like my ribs were squeezing, like it was horrendous and I couldn't talk, I could barely breathe. And I was very, very ill. 

But I didn't have the symptoms that they were talking about the cough or the high temperature. In fact, I was really shivering and cold. I felt like I had like a hypothermic response. My specialist said after the fact. But yeah, I got to the point where I just turned blue, my partner was really worried. So he called 111. And they sent an ambulance and I went into the hospital. 

And, like, again, it was so early on, and they weren't testing people at that time. My pulse ox was 88. And they did do X ray, which showed pneumonia and ground glass opacities, was on the X ray, So they kind of said, yes, it's COVID. From that, but I never had a positive test. But because of my age, at the time, I was in my mid 30s, they were not going to admit me, even though I was like, gasping to breathe. 

So I was sent home with broad spectrum antibiotics, for the pneumonia, and fortunately, I mean, that was the right thing to do. And the antibiotics did help quite a lot. But things were not right, for like a month after that. But I did have, and I know a lot of long haulers have this, like, I just have a period of about three weeks, where I felt like I was back to normal, before the long COVID hit.

Jackie Baxter  
Yeah, that's interesting. Because I mean, you were taken into hospital, whereas I wasn't. But yeah, I also had this kind of like, horrendous, initial experience. And then things did start to improve. And you do start to think like you're coming out of the tunnel. 

And this is quite interesting, because some people, they get sick, and that kind of drifts into long COVID, kind of like, sort of seamlessly. But you do get a lot of people who do have their initial illness. And you know, it's sort of varying severity. And then they sort of think Oh, okay, that wasn't very nice, but I think maybe I'm okay, or I'm getting better, you know, things are going in the right direction. 

So, what happened after that? Because the fact that we are here having this conversation means it wasn't quite as simple as it sounds like it's about to be. 

Sarah F  
No, it was not. Yeah. So what happened was, and now with, you know, the benefit of hindsight, I knew it was completely the worst possible thing to do, but I decided to go hiking with my daughter. And it was we were having a heatwave at time. It was like 25 degrees Celsius, or something like that. But yeah, I went, I went hiking just locally in the Peak District with my daughter, strapped on me in the carrier. 

And I walked 10 miles, in 25 degree heat, which by the time we got back to the car, my chest, I could feel like just this huge pain. And it felt like it was like in the heart, like, I felt like a huge pain in my chest. And I was just like Oooohh. By the time I got home, I just needed to just go lie down. And that and that was the start of the long COVID. Basically.

Jackie Baxter  
Yeah, I mean, I similarly tried to do too much too soon. You know, at the time, it seemed like the right thing to do, didn't it? Because you thought, well, you know, we need to move. This is what I've always done. And, you know, looking back on it, it was like, gosh, I should have known better Surely, I should have known better. But actually, why should you? Because if that had been your experience, up until then, for the entire of the rest of your life, then, you know. I think, you know, blame isn't really relevant here.

Sarah F  
Right. But yeah, there's so many people did it in different ways to for like, push themselves too much too soon. I'm not saying like, the long COVID was probably going to happen anyway. It was just that was just the kind of tipping point for me. 

But yeah, I developed. I mean, probably my main symptom was chronic fatigue. And all that involves, and I developed PoTS, I was very intolerant to standing and doing anything stood up. And the chest - I had a lot of respiratory problems that returned. Clearly a lot of inflammation in the lungs. But it was I think, like the main thing, like for me, my presentation was predominantly the MECFS kind of cluster of different symptoms. 

But yes, it was pretty scary. And obviously, you know, as a mom with a baby and everything else, and my partner was working from home, obviously the pandemic it was like, yeah, a really frightening and bewildering experience. 

I'm glad that I discovered the body politic slack group quite early on, I think maybe a month into that, because I saw on the Atlantic website, there was an article by Ed Yong, just basically saying they caught COVID. And they haven't got better. And I'm like, oh, that's me. 

Yeah, at the time, I just feel like I felt like, so, like, all by myself, and you know, nobody was talking about it. But that's when I first saw, okay, because people say, Well, Long COVID. And then I joined the Slack community, which was such a saving grace, I'm so so glad I did. Because not only was it, I say "was" because it's past tense. It now no longer exists, which is sad. But it was such a wonderful supportive community, and also a really great place for information, for really good information. There was also some bad information, sure, like at the time, but it certainly in 2020, and probably into 2021, too like, a lot of, you know, everyone was very desperate and really, like, frightened. 

And, you know, I definitely tried, you know, dozens and dozens of supplements and things, just trying to find the magic one that's going to fix everything, or whatever. But yeah, like, my fatigue was really bad. I was basically bed bound. I couldn't go up and down the stairs. Like I was crawling to the toilet, I was obviously far too ill to look after my daughter. 

And I do, like I look back on some of that period. And I do kind of grieve like the loss of my mothering experience then. But obviously, I can't really complain, since I did, in fact, recover. And that's the main thing. But yeah, it was a really, really hard time.

Jackie Baxter  
Yeah, I mean, I think,we were chatting just briefly before we started recording about how one's perspective on your illness and your recovery can change over time. And I think certainly, six months on from my own recovery, I'm, and I think it's probably healthy to do so. But some of that sort of fear and terror and isolation and all of that stuff that we experienced, sort of especially early on, but throughout the whole journey, I think you start to lose some of that. 

And I think that's part of moving on. And I think that probably is healthy. I don't want to be remembering all of that fear and terror and all that trauma. You know, I think it's good to be able to move on from that. But I think it's also maybe healthy to be able to kind of think, yeah, actually, gosh, that was absolutely horrendous. And, you know, you had additional sort of stuff, where you had a small child that you were unable to care for, which must have been a huge stress, a huge worry, a huge, all sorts of feelings on top of your illness, which was horrendous in itself. 

So you know, I think, you know, maybe without diving too deeply into it, I think, yeah, it was, you know, for me, it was a horrendous time. And I think, you know, that's probably mirrored in your experience, you know, it's just absolutely awful. 

And that kind of validation that you get, I suppose, you know, when you do find others whose experiences are relatable, you know, you you found the slack group. I remember reading Fiona Lowenstein's Op-ed in, I think, was it the Atlantic, I can't remember, and thinking, Oh, my goodness, it's not just me. And that was, you know, kind of, like, wonderful and terrifying at the same time. But it did make you feel just a little bit less isolated, didn't it, to know that there were other people out there who were experiencing similar things.

Sarah F  
Yes. 100%. And like, at the time, I was struggling to get any kind of health care support. And I think that through the slack group, I kind of learned some things. Like I kind of realized quite early on via that about that it's likely to be PoTS that I was experiencing. I did like a sit stand test at home really early on, and so I asked my GP for a tilt table test. And so I actually got a tilt table test in September 2020. So a really quick I think, I must have been pretty much at the front of the queue here in Sheffield from the from the long COVID community certainly. 

But like knowledge is power and I would not have known, I would not have discovered that at the GP, he was not pointing it out to me that that was that was likely to be it. But I did go on beta blockers after the tilt table. By the way tilt table test i absolutely loath, and I think it's like medieval torture. I don't know why they doing it to people. Because like, it sent me back for like a month after and it was it was truly horrendous. But on the plus side, I got positive diagnosis. I got some beta blockers, and the beta blockers did help me to be able to sit and be more upright, and then do a bit more walking. So that that was my first kind of like win I suppose. 

But like on the other hand, like, obviously, it's caveats, because of the whole chronic fatigue syndrome. And PEM. Because I was trying to do more, I was trying to look after my daughter, and - I kind of what I now know what's happening after that point, is that I was kind of going into boom and bust cycles. And I was like running on adrenaline, basically cortisol and adrenaline. 

And in order to do stuff with my daughter, and this is in the house, you know I'm not talking about, you know, anything super elaborate, but to be able to cook and be able to look after my daughter and do things like that, I was basically running on adrenaline until like two or 3pm. And then every day, I would just completely crash out, crash and burn, and be in bed and not be able to open my eyes. And almost, like paralyzed. I mean, obviously not literally paralyzed. But it felt like you know, eyes closed, limbs heavy, unable to really do anything. But then the next day I'd do it all again *laughs*

Jackie Baxter  
yeah, again, I can completely relate to that. But it's this kind of thing where you're like, well, in the absence of any other information, any other knowledge, you know, I don't know what to do. So I'll keep doing the thing that I'm doing, because like, I literally don't know what else to do. Which I think brings me back to something that you said earlier about knowledge being power. Because I think, you know, this is something that I have kind of learned throughout my experience. 

I went into long COVID with this absolute faith in the medical community, because my experience up to that point had been well, basically that I had never really been ill. You know, you go to the doctor, and they give you antibiotics or something and you go home and a week later, you're absolutely fine. So it was like, Oh, great, you know, doctors are like magicians. Isn't this wonderful? So then when I got long COVID, it was kind of like, well, actually, getting hold of a doctor, let alone finding a doctor that understood what was going on with you, was just absolutely impossible. Certainly, where I was in the UK, I think it was particularly difficult because the health service was so overrun. 

So if we were able to do bits of our own research, and we were able to find out that, oh, PoTS is a thing, because we'd never heard of this before. So it was you know, people really doing their own research, finding out their own information that they then could either hack their own way through it, which we absolutely wouldn't recommend - use your doctors. But at the same time, people are so desperate that, you know, you can't blame people for doing that. So it's kind of this whole different side of it, isn't it? Where it's like, okay, doctors aren't magicians? 

Well, of course, they're not, you know, I had them on this pedestal that they didn't deserve to be on. But you know, also that yeah, this complete kind of flip in that actually, this is something that doctors really don't understand very well, for the most part, which was kind of a scary realization for me that I kind of was on my own in terms of the medical community. And a lot of the people that were the most helpful were the other people that were equally sick, that were also trying things out and saying, Hey, I found this thing, and it helped me a little bit. So it's like, right, well, let's go give that a try then.

Sarah F  
Yes. 100%. And yeah, like, I mean, to be fair with that, particularly the PoTS like, it wasn't obviously just the Beta blockers, but it was the lifestyle modifications; talking about compression, and hydration and salt in everything, electrolytes and all of that. But yeah, like I wouldn't have known to have done those things without hearing about it. 

But yeah, like, I mean to speak to your point, like it was then I think kind of like the spring of 2021 that I really started to acknowledge that I had MECFS. Actually my long COVID clinic here in Sheffield referred me to the chronic fatigue hub or clinic whatever. A caveat, unfortunately at that time they were still doing GET. 

So it was it was helpful to go to them and to be explained, like explain okay, this is ME, it's mild, moderate MECFS and you know, we did things like activity tracking and that's when I realized about the boom bust thing. And actually, you know, it's via them that I learnt about pacing, and pacing is obviously so so crucial. You know, I thought for a while that I was pacing well, but obviously no, not exactly,

Jackie Baxter  
I'm not sure anyone paces well. 

Sarah F  
It's so kind of like different from you know what ableist society is expecting of people, right. But like I kind of learnt to prioritize rest basically, and to have a rest, punctuating throughout the day. And I decided, obviously, with my yoga background, I decided that I would start focusing more on guided meditations and pranayama, the breathwork practice during my rests. And so I'd enforced rests, literally 10 to 12 times a day. So every hour, hour and a half, would lie down and do guided meditation. 

I personally feel like, and obviously, it's speaking to what I do now, trying to help people, but I do think that getting yourself into more of a relaxed state, rather than just lying down, and maybe like scrolling on your phone, or whatever people might have considered to be rest, because in a way that's not resting, but it's exerting. But like, I think completely trying to calm the nervous system down and trying to like, because really, I learned that - I didn't know who I let this off - but I learned that you need to have enough energy left over in your energy envelope for your body to heal. And that was really an interesting point that I was not previously getting. 

And so I'd like to try and enforce rest and enforce myself to heal. But yeah, I did, I did actually drop out of the fatigue clinic, because they basically set me - they called it something else, I think they called it something about activity management. Basically, they were saying, so you have to walk five minutes one day, 10 minutes Next day. Eughhh. And obviously, like, I attempted to do what they said but, you know, and also, n the Slack community, people were saying, Don't do this. It's terrible, like, so I already had the heads up from there. It was before the NICE guidelines got changed here in the UK. But yeah, I just I just decided to kind of discharge myself from their service, because obviously, that was not helpful advice at all.

Jackie Baxter  
Yeah, I love what you were saying, though, about just, you know, your body needing the energy to heal. Someone I spoke to before had a wonderful way of putting this and she said, Giving back to your body. So instead of using all of your energy up and saying, right, okay, well, you know, I can do this number of spoons is gonna take child care, and then I can use those ones to make a meal, and then those ones to go to the postbox or, you know, whatever. And then I've got two spoons left to brush my teeth before I go to bed. Actually trying to really reduce as much as possible to allow the most energy you can to go into to go back into your body to go into the healing. 

And I think yeah, this was something that I experienced as well, you know, resting physically, is quite easy, in some ways, because you just stop, and often you are forced to stop, because you literally can't go on. But actually, for me, possibly more importantly, because it was something that didn't come naturally to me, was the cognitive rest. So you know, I could lay down on the sofa and be like, I'm resting. But actually, I wasn't properly resting, because my brain was still going round in circles. And it was, you know, hyper, thinking all the thoughts, because that's what my brain has always done. 

And then suddenly, it was like, Well, I don't know how to not do that, it wasn't a thing that had ever occurred to me that I might need to not to, because it was just how I'd always been. And I initially, I'd started trying to do these yoga nidras, and I found them impossible, because my brain would just be like, you know, it would focus for about 10 seconds, and then it was off again. But over time, I did find it easier to sort of bring my awareness back to what it was I was supposed to be focusing, or not focusing on. But also just allowing myself that kind of grace with it as well, and was like right, Okay, I know my brain is quite a busy brain. So if it wanders off, that's okay, we just bring it back. 

But I think you know, for me, it was like any other skill, you don't suddenly start doing it and be good at it. And you know, you were already aware of yoga beforehand. So maybe it was something that came more naturally to you. But certainly in my experience, it was something that I had to keep doing before it did start to come naturally. But then once it did, oh my goodness, it was amazing.

Sarah F  
Yes. 100% like that. Obviously I did have that background, and I did try and do actual yoga asanas, but with very poor results, because I was doing the wrong kind of yoga and that's something we can come back to as well. But obviously doing too much. And so the kinds of yoga that I teach in my classes is very much the things that I learned is what's right for this type of condition, in order to improve. 

But I mean the brain is obviously there's neuroplasticity at work right? And so obviously I did have a background in meditation. But then I think the virus did a lot of damage to my nervous system. And to like the vagal tone, obviously the vagus nerve is a big part of this. I think my vagus nerve was like broken, like literally, it was like, Yeah, I mean, that's obviously a big part of what PoTS is about. So I think I had to kind of ease back into it. 

But at same time, I think that I know, it sounds extreme to be meditating 10 to 12 times a day. But I feel like I actually was kind of like, literally rewiring my own brain. And getting out of a certain kind of doom loops, like Doom spirals I call it, where you kind of start.... In Buddhism, they call it the second arrow. You can't help the first arrow, which is the initial wound, which obviously for us was COVID. 

But the second arrow is what's causes the suffering. And that is your mental response to that first arrow. And like to get out of loops of thinking, I'm never get better or that you don't know what the future holds. Also looking backwards and thinking, I'll never be able to do what I used to do. And you know, that sort of thing, is categorically not helpful to healing. 

And so the more I was focusing on like a positive outlook, and meditations, that will kind of like, obviously rewiring the brain to feel safe and secure and things like that. I think that was obviously a really big part of what I was doing. But I mean, initially got into it to help with pacing. And it did massively help with pacing. And I think that like once you get a handle on pacing, and once you get to a point of more stability of symptoms, then that's really where your body is starting to heal itself. 

I did try a bunch of other things. And I went and did the doctor Myhill protocol. So I did Doctor Myhill and and she definitely - it was very helpful. So that involved the Paleo keto diet, which definitely gave me an energy boost. But now that I look back on it, I did the keto diet for nine months. And it did help. But I feel like the main thing that really helped was the fact that obviously with no carbs, I wasn't having gluten. And like I realized now, that post COVID I'd develop a gluten intolerance, and to a lesser point dairy as well. 

But I think that the the main thing that was helping me with keto was getting away from intolerant foods. So make of that, which you will, but something else that Dr. Myhill, who's a functional Doctor advocates for is the mitochondrial kind of theory of chronic fatigue, which is that your mitochondria in your cells are not getting energy in order to run properly. 

And so some things that she advocates for that really, really helped me was something called D ribose. D ribose Powder. So I started doing that as well. And I think the D ribose. I actually felt like I mean, obviously, there could be a placebo effect, can't say for sure. But honestly, within a week or two weeks of starting the D Ribose powder, like I felt like, my body felt like it, like really needed it. It was the only supplement that I felt like my body was like, Yes, this is good. 

But yeah, and also through her I started the the B 12 injections as well. And actually something I didn't mention earlier was after the vaccinations, Covid vaccinations I did get more symptoms off of that. And one of them was the peripheral neuropathy, which is pins and needles and tingling through all the limbs, the feet, that kind of like started off in my feet and kind of spread up and then my hands. And it got to the point where my the sole of my foot was going numb. So it was like really bad. 

So Doctor Myhill basically, advocates for trying B 12 injections,  for fatigue and also for neuropathy, and things like that, to see whether it is to do with that. And for me, it definitely was. And so I started that and it did take some time. And you also have wakeup symptoms, where your nerves are kind of like waking up from from basically becoming dead. 

I'm not a doctor, I'm not a scientist. So it's hard for me to like explain really, really well. But like I think that through things like viruses, through vaccinations potentially, you can wear away the myelin sheath of a nerve. And so as that improves through the really high doses of B 12, and other cofactors, it can feel worse before it gets better. So that was something that was happening as well. So Dr Myhill was definitely really helpful. And so that definitely gave me a boost. 

But then I think, what got me all the way there. And I'm glad you had her on the show recently. I started watching Raelan Ag;e, on YouTube. She's amazing. Love Raelan. So I mean, one thing that she does, the main thing that she does is she interviews people that have recovered from MECFS. And that's probably why I love recovery stories and why started my podcast, right. It's because it's so important to hear, you know, people that have positive outcomes. 

And obviously, the people that are struggling and the people that aren't getting better need to be vocal in order to get treatment and care. And I think some that at the same time, they can drown out the more positive recovery stories. And just like listening, so I started to, you know, on my rest moments, I would start listening to her YouTube, I couldn't watch it because watching the screen was too much for me still, but I would listen, and I will start listening to loads and loads of recovery stories. 

And off the back of her stories and the fact that she herself recovered from MECFS herself, right. But she started to observe patterns of things that were helping people the most. And of course I said Okay, I'll start doing that. So I think as well as giving the hope, and the optimism of improvement and recovery, full recovery, because obviously a lot of people say that MECFS is impossible to fully recover. And clearly, that's not the case. 

So off the back of that I started, she was advocating for probiotics, and particularly food-based probiotics and prebiotics. So I started doing that. I kind of went off the deep end, and I don't recommend it. I drink like a whole bottle of kombucha, having never had any before. I would recommend listeners to not do that much. 

And also, there's a whole MCAS thing as well. For me, I did not have MCAS so I can launch myself into fermented foods without it all going horribly wrong. But obviously, for some people, that's something to avoid. But so after the initial herx reaction, I felt like I was dying for like three days. And then suddenly was improved. And I realize now that A. I had leaky gut, which was healed by the Keto, but B, I had a really dysfunctional gut microbiome. And I think that was like one of the missing pieces of the puzzle for me, but starting a lot of probiotics and prebiotics. 

To be fair, I was taking probiotic tablets for a year prior to that. But you don't know if they're even alive. I actually think that maybe they were just dead and doing nothing, right? Because Realan definitely, and she does her own her own stuff, like she does her own like keifers and stuff at home. And she has videos talking about how to do that. But she was like saying, like just keep having food based, because you know, it's alive if it's like a fermented food. And so I did that. 

And also it was it was Raelan that got me back into movement, back into exercise. And she advocates, she has a video where she advocates for - I mean, this is also important to say that if your symptoms are not stable, then obviously doing this sort of thing is not a good idea. And like like I said, I am not in favor of GET - graded exercise therapy or things like that. And I know it sounds a bit like this. 

But basically what she suggests is to do one minute of own body resistance training a day. And you can even do less than that, in fact, but so it's like so you can set a timer for 60 seconds and you literally do like four squats or you know, like whatever it is. And so I started to do like a yoga pose for like one minute and things like that. And then she basically was saying like so do that for a week. And if after a week, you're feeling fine, if you're not getting any PEM, then you can try to increase it to like 90 seconds, and just basically to begin to chip away. 

And I think that's a big part of what I teach in my yoga class, which is not to not do any like cardiovascular activity, but to just strengthen your body very, very gradually and slowly in ways that are supportive of things like PoTS. So all seated or laying down. But like that was the way that bit by bit, I began to kind of increase my tolerance for things. And I'm so grateful to Raelan for that. 

And so yeah, a bit by bit, I got to the point where I was doing 15 minutes of resistance a day. And at the same time, I was doing a little bit more walking. And again, it's very much listening to your own body, and not doing anything that someone is telling you to do, nothing prescriptive, like, on this day, you must do that, on this day. And it's about listening to your body and listening to the signals. But that's a key thing is just to avoid PEM. And to pace it as much as you can, but like to very, very slowly increase your envelope and tolerance for things. 

And that's basically what I did. And so I got to the point where, then I started to want to do like more and more. And then I got back in, obviously, into daily yoga, and I was doing yoga, like an hour a day. And like I was very much learning, having learned what the kind of things to avoid, which is standing poses, inversions. A lot of people they try yoga, but they're not trying the kind that's supportive of this sort of thing. They do too much, because many types of yoga is very intense, right? There's types of yoga, which are... Yeah, I mean, to be fair, the whole of like, yoga culture, there's ableism in that too, right? There can be. And I think that's something that I realized as well and want to address with my own classes. 

But yeah, so it got to the point where in spring of 2022, I was doing more and more, I was walking, I was walking at the peak, maybe getting up to like three miles walks and things like that. And it got to the point where I couldn't remember when my last PEM episode was. And that was the point where I started to think I might be healed, I might be recovered. Right. And so I was doing more more, gradually moving my body, being careful. But like it was getting to the point when I was doing five mile walk, six mile walk, seven mile walks and no PEM! 

And so yeah, I got to the point. And then like, on the slack group, they had like a recovered channel. And I was like really, like nervous about putting my recovery in the recovered channel. But one day, I just like, I was like, Well, it's been like three or four months or five months since I had any PEM at all, like I seem to have cracked it. So that's when I decided that I was recovered. And so it was roughly two years since I caught COVID. 

Jackie Baxter  
And I think what's really interesting about a lot of what you've just been saying is, what's the phrase is something like "you're the expert of your own experience, and of your own body". So you know, it's not for somebody else to say, do this and it will work, or don't do this because it won't work. Actually, you know, there's an element of having to work it out for yourself, because no two people are the same. And no two people's experiences are the same. 

So it's almost like you've got to try things, but you've got to try them in a sort of very gentle, safe, forgiving way as well. Because we will try some things and we will try too much or we'll do too soon. Or, you know, like we were talking about earlier. And Oh, whoops, did too much. Now I feel terrible. And you know, giving yourself grace for that. But also, you know, really listening to your body. So you know, if you are feeling okay, and trying something and thinking Oh yeah, okay, I just walked a mile. I didn't think I could do that. Whereas the next day, you might wake up and you think, no, I don't think I could walk a mile today. 

So don't you know so it's really trying to kind of feel that out for yourself, rather than being in someone else's kind of prescribed plan for whatever it is, be it yoga, movement, walking, which particular supplements to take, taking a gallon of fermented foods, or whatever it happens to be. You know, I think everybody is so individual and do have to kind of, you know, gently find their own way through things. 

And yeah, I mean  that moment of recovery is a really weird one, isn't it? Because it's almost like you've got to have the guts to stand up and say Yeah. And that for me, certainly that was quite a tough thing to do. And it was almost like I did it, but I didn't do it publicly. And I just kind of wanted to sit with it for a couple of weeks afterwards to just work out how I felt about it. But also, I was worried about saying, I'm recovered, because I thought, well, is that kind of like tempting fate a bit? 

Sarah F  
Yeah. Right. 

Jackie Baxter  
You know, like, people tell me that you can't recover from this. And yet, I think I have. So maybe I should just give myself a bit of space with it before I let people know, kind of thing.

Sarah F  
But I think as well, there's so many people that are like, quietly recovered, I call it like that, you know, recovered, and they've gone back to living their full life and doing whatever. And so they're not, you know, in the Twitter spaces, they're not like, not out there talking about it. But there are many, many, many people that have fully recovered from long COVID. And also from MECFS, or PoTS, or whatever you call it. 

I mean, obviously, some people don't like the term recovered, and prefer in remission. I'm like, Okay, I don't mind which word you use, at the end of the day, if I'm working full time, running 5k's like, I started the business like, I can claim that I have fully recovered.

Jackie Baxter  
yeah, and I think, you know, this, this leads quite nicely into the the work that you are doing now. I mean, I completely agree, I think, and I know everyone's different. But for me personally, the word recovery is absolutely vital. And I think the belief in recovery is fundamental, certainly was fundamental to my own recovery. And I've had a lot of people say similar to that. 

And how do we believe in recovery? Well we believe in recovery by knowing that other people have done it, so things like your podcast, things like Raelans channel, things like other people who are sharing recovery stories. You know, I think this is why it's important. It's partly the, oh, they've recovered, maybe I can, but also, how did they recover? Oh, okay, they did that, that and that, okay, that's great. Well, I've tried two of those things, and they didn't really work. Maybe I'll try the third one, maybe that will help me. 

But no two recovery stories are going to be carbon copies of each other. So it's not like, you know, someone out there is going to hear your recovery story. And they're gonna go, Oh, wonderful. That's what she did. So I'm gonna go and do all of those things. And I'm going to be fine. Like, I would love it if it was going to be that simple. But it really isn't. 

So that's why hearing lots of recovery stories, is so vital, isn't it? Because then you can start to pick apart some of those themes, you start to get different ideas that you maybe hadn't come across before. And then you can really start to kind of work out if that might be a thing for you to try. But, you know, I think that's why one isn't enough.

Sarah F  
Yeah, I know, exactly. And like in the functional medicine space, they call it root causes. And it's going over to your root causes, and finding those out. And obviously, for everybody is different. It's very different. And that's why, on the reasons why the different symptoms are so different, right? There's 200 different symptoms that people can have different combinations of, because everybody is so different, right? 

But I feel like I kind of did it myself, kind of DIY, essentially, kind of located my my root causes, and like B 12 deficiency, like gut microbiome problems, and leaky gut and things like that. And then they're kind of like, over time. It's kind of like being a detective, I suppose. But yeah, it's just vitally important to hear the positive stories and the fact that people can fully recover. Yeah. 

And so once I had recovered, I did feel so deeply affected like by this whole ordeal, and I felt I couldn't be the person I was before because it had changed me and given me such a perspective, on on everything really - on disability and just a huge, huge perspective on people suffering. And so I decided that I can't go back to exactly what I was doing before. I wanted to help people. And I felt like, Okay, I was going to try to do different things. And if I could help one person, literally one person, that's worth my time to try, right? 

I'm not suggesting that yoga is the cure, or the be all and end all, and I'm not suggesting that it is for everybody. But obviously with a yoga teaching qualification, I thought, well, that's where I can start, and to see if it resonates with people. And that's when I started my first Zoom yoga class. And for a year it was it was free. It was donation based. And yeah, lots of people came. And I think I've taught something like 400 different, 500 different people. 

And I'm very, very glad to say that nobody, literally nobody has reported experiencing PEM after one of my yoga sessions. And that's like, the absolute crucial importance for me. Because my style of yoga is all about, like, the number one goal is listening to your own body, is to listen to your body, and listen to the messages it's giving you. And to get into a parasympathetic nervous state, which is so essential for healing. 

So my classes, they go through some careful yoga poses, we also have a long period of guided meditation and relaxation. So it's kind of like very much supporting recovery. And I'm really glad to say that there's been many people that have attended my classes, that then I call it graduated, they graduated out of my class, and they improve so much that they didn't feel like they needed it anymore. 

But like, yeah, it's very heartening. And like some of the reasons why I keep going with it is that I'm, you know, if I'm helping people, if people are then able to go back to work, or they're feeling like they have recovered, or they've, like, got stable with their symptoms, and I think it's just so worthwhile doing it,

Jackie Baxter  
I think it's this idea of wins, isn't it, you know, everybody is coming into this in a different way, you know, some people are extremely severe, where they can't get out of their bed, some people are maybe doing better than that, some people might be doing a lot better than that. But it's teaching people to really listen to what's going on in their own bodies, to what their body is telling them, you know, any improvement to anybody is a good thing. 

So, you know, maybe yoga isn't a cure, or maybe it is for some people. But if somebody comes along to your yoga class, for example, or my breathing course, or someone else's something that they're doing, and they see some improvement, then that is amazing. Because then that gets them up to a level where maybe they can add something else in, or they can get a bit of joy. Maybe they can spend some time with their child, or they could go back to work one day a week, or they could, you know, they could do something that they couldn't do before. Or enables them to get into something that they couldn't before, you know, and I think that is so important. 

So you know, all these things that help, even if they don't help 100%, I think it's so, so, so important, that they do help a bit, because a bit is better than nothing. You know, 1% is better than no percent. I think that's so important. And, you know, that the "what we can" rather than "what we can't." 

But I love what you were saying, because I 100% believe in this with what I'm doing as well, about working with someone who gets what you're going through. And, you know, you and I understand long COVID as much as anyone can, because we've been there. You know, no one can understand anyone else's experience 100%, because you haven't walked literally in their shoes. But you know, because we have experienced long COVID, because we have been there, we understand a lot of the things that maybe someone who hasn't experienced long COVID or MECFS, or you know, any of these kind of umbrella of illnesses. 

So I think, you know, this is why working with somebody who does have that experience, and that understanding is so important. Because you understand PEM, you know, not to push people too much, you know, to encourage people to listen to their bodies and all of these things, you know what poses may or may not work, you understand about doing things laying down rather than standing up to start with, for example, whereas other people maybe don't. I think this is such an important thing. 

You know, and it's not to say that you and I, for two examples, understand everything, because I don't think either of us would be quite so arrogant as to suggest that we do. But, you know, I think, it's just understanding the impact, and, and all of those things that can just be so, so key to helping people recover. Because, you know, someone might have tried yoga and been like, oh, well, that put me in PEM. And it's like, okay, well, we need to do this in a way that works for you. You know, I meet my clients where they are, I don't try to put my preconceived ideas onto them. We go with where they are on that day.

Sarah F  
Yes, yes, absolutely. And I've had people come to my yoga class that said, they tried a different yoga class. It was meant to be gentle, but it was there was too much. It was way too fast or too, whatever, you know. But I found a formula that seems to work and it seems to have really helped people. And I keep on doing it. Because I have classes here locally in Sheffield as well on Mondays, and I teach on Fridays and like a guest teaching for the yoga for ME charity. And then I have a Thursday classes online. And I also have the on demand courses as well, I have four different courses on demand that people can subscribe to, if they wish. So I'm trying to, you know, cater in as many ways as I can to try and offer this service to people. 

I also, as you mentioned before, I did start a podcast, which is a lot of work, I have great respect for you. It's a whole lot of work. And when I sometimes I feel like, Oh, why did I do this? But the the point of the long COVID Hope podcast is exactly that - hope - trying to offer hopeful stories. And it's not just fu;; recovery stories, although we do have a lot of full recovery stories. It's also stories of people that are just getting to a good place in their recovery. And they want to share the positive news about that and try and help people feel a bit better about their outlook as well.

Jackie Baxter  
It comes back to that thing we were just saying, wasn't it that, you know, yeah, of course, recovery is the goal. But there's a lot of steps on the way to recovery. So each step up the ladder is a good thing, is a step in the right direction, and should be celebrated. 

Sarah F  
Yes. 

Jackie Baxter  
Well, thank you so much for joining me today. It has been so lovely chatting, all of the things that you've mentioned I will make sure that they go into the show notes. So if anyone wants to connect with you, wants to join your classes, wants to do any of that, it's all linked below. And yeah, thank you so much for sharing your experiences and your own recovery.

Sarah F  
Thankyou so much for having me, it's a true honor to be here.

Jackie Baxter  
It's been such a pleasure.

Transcribed by https://otter.ai