111 - Sophie Reynolds - Recovery from ME/CFS

Episode 111 of the Long Covid Podcast is a chat with Sophie Reynolds who has recovered from  ME/CFS and is now using her experiences to help people through Pilates, which was one of the things that helped her so much. We chat through her experiences as well as what helped, and what she has learned from the experience to take forward into her life now.

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(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 my guest today, Sophie Reynolds, who has here to share her recovery story. So a very warm welcome to the podcast today.

Sophie Reynolds  
Thank you so much for having me on. It's an absolute pleasure to be here.

Jackie Baxter  
Thanks so much for giving up your time. So to start with, would you mind just telling us a little bit about yourself, and maybe what life was like before illness, oh,

Sophie Reynolds  
gosh, where to start. I became very ill in about 2018. Just to paint a picture of my life at the time, I was working as a prison officer. I was doing a full time Master's in sort of criminology and psychology. There were so many factors leading up to eventually developing MECFS. So I was, I just had a breakup, I was working very long hours, I was obsessed with the gym. I was obsessed with eating really healthily. I was obsessed with productivity and success, and just being in my own lane and just isolated myself from friends and family. 

And my priorities, or my, you know, my circle of like what mattered to me, was very heavily weighted in work, looking thin, being as healthy as I possibly could, being as fit as I possibly could. And all the things that actually mattered in hindsight, kind of just got left behind. And I really sort of ran myself into the ground. 

Jackie Baxter  
Yeah, and it's sounds quite relatable to my pre illness experience.

Sophie Reynolds  
But similar traits that you find people who develop long COVID and MECFS, and this is very generalized, but most people I've talked to have this perfectionist trait, they have this like, type A personality, like very driven, productive, just try-hard people, pleasers. I was all of the above. I was going into work every day, and then I was going to the gym. And then I was, you know, meal prepping for the next day. And repeat, I did - that all that was on my mind. You know, a social event would come up on a Friday and Saturday. And I thought, I don't have time for that. That's just not in my repertoire right now. It's not in my schedule. It's not going to help feed the success. So I was very focused. 

I think the stress of the job. I think, yeah, in hindsight, I was very anxious. I was running on adrenaline. I was absolutely petrified every single day going into work. And I channeled all these negative feelings into productivity, into routine, and things that I could rely on and things that I could control in what was probably feeling actually very out of control. I didn't have control over the feelings that I felt going into prison every day and witnessing the things that I did. Being in these absolutely terrifying situations, I just had to do it. And I had to complete this two years of a program. 

So yeah, I have no choice really, and sort of, I'd already done a few changes in my career so far. And being in prison was this two year scheme, I just had to get through the two years and then you know, the doors would be flooded open with all these opportunities that I could do. So I just needed to get through it, it was my way of coping. 

Jackie Baxter  
And then you got ill 

Sophie Reynolds  
And then I got ill. And then honestly, nothing could have prepared me for what came next. I remember it. So clearly. I started to feel a little bit under the weather, like in the same way that you develop a cold. It was about March time. And I felt a bit tired, a bit groggy, like I was kind of developing the flu. I carried on going to work I remember so clearly calling my mom, I was making dinner and I thought you know what, I really don't feel well. And I can't go to the gym tonight. And she was probably like, Thank God, like, give the girl a break, get home, bath, eat some chocolate and just chill the beans. 

But to me, this was the end of the world I couldn't believe that like something was hindering my routine, you know. I wanted to just do what I was always doing. And that never went, I never got better. I just and I remember I was sort of going to work. But then that night, I thought I might have to call in sick tomorrow. And calling in sick to the prison service is a big deal. I always got told, don't just take a day off, take five days off. Otherwise they'll think you're faking it. It's very like institutional, it's very like military-esque; lots of white macho men, where physical strength indicates like mental strength and resilience and capabilities and ability to do the role well, and as like a small like young female, who was, you know, not very physically imposing at all, particularly at the time. It was a sign of weakness to take a day off work. 

So anyway, this was a big thing, to have to call in sick and then to take a few days off and that turned to five days, into 10 days and two weeks into a month. And I just I never got better. I was just getting worse and worse. I couldn't get up. I had to have a nap if I took a shower. And all in this time I was battling mentally with not being able to run or go to the gym. So I actually remember being bed bound most of the day, and then saving myself up for a run in the evening. 

I thought, you know, what if I just rest all day, I'm going to run in the evening, and I'm not well, I should never have been doing this. And I remember going out. My flatmates were having making dinner and I went out, I ran to the end of the road. And I felt so exhausted, I felt like I had done about three back to back marathons. And coming back in in floods of tears, where probably just sat on the doorstep for a good half an hour crying it out, thinking what is wrong with me, what have I done? What has happened? What's going on in my body? I just didn't understand it.

Jackie Baxter  
Yeah, and this is interesting to me, because we're talking pre-COVID, obviously, at this point. And, you know, it took me a long time to realize that I wasn't getting better, and that there were other people that also weren't getting better. And then it got the label of long COVID. And then, you know, as people started making links between MECFS and long COVID. And you know, it took quite a long time for that to happen. That's what it felt like, anyway. But you were ill before any of this happened. So at what point did you start putting pieces together and starting to put MECFS labels on things?

Sophie Reynolds  
That's such a good question, because I think I was in denial. Honestly, even before I got a diagnosis of MECFS. I thought, This can't be it. Absolutely not. This is not me. And I think, I went to the doctor's - I was going to the doctors regularly, sometimes just speaking on the phone because I was too anxious to leave the house. We were speaking earlier about the trauma response, or the trauma associated with being or getting a diagnosis and also being this ill, because you have no idea, it's not like a common cold. It's not like a flu. It's nothing you've ever experienced before. I've really thought I was dying. It sounds so extreme, so dramatic. But I just felt so helpless and confused and lost. 

And I didn't feel very reassured at all talking to doctors who also had absolutely no idea what was going on with me. I remember going to the doctor's, it was about four or five months in. And the doctor said to me, Well, you know, this, this could go on for six months, it could go on for a year. it could go on for two years. And that just - the waterworks just flooded. You know, I was No way, this young girl sitting in the doctor's office thinking, I cannot believe what I'm hearing. Those words just don't align with who I am, who I have been the last like three years. And what I want to be, like this doesn't this is not part of my plan for myself. 

And yeah, taking that news on was really tough. It took me a long, long time. And I was an anxious wreck going on from there. I think it took me a long time to recover from that. So I went on antidepressants. I remember that was the first thing they thought - Ah, we've got a pill though, so don't worry, that's going to calm you down. That's going to calm the anxiety. And to be fair, it's probably what I needed at the time. Because I didn't have any control over my day or like, how to look after myself, I'd really lost a lot of hope. 

And the anxiety was so debilitating. I couldn't decide, you know what t shirt I was going to wear, I couldn't decide whether I should have, if whether I should use this mug to make my tea or this mug to make my tea. It was all became a little bit too much. But that was definitely like a trauma experience as a result of being so ill and not knowing what it was, or feeling so confused by the situation. 

Jackie Baxter  
Yeah, I mean, it's it's such a tough position to be in. And you're obviously feeling pretty awful physically, you are suffering this kind of just loss of your life as you knew it. I think this is what people who haven't had an experience that's relatable to this struggle to understand. That it's not like, you're gonna feel rubbish for a week, it's that you're gonna feel rubbish and not be able to do all of these things for an unspecified number of days, weeks, months, years. 

And I remember someone saying to me early on, oh, well, you know, you'll be fine in a month. Or, you know, once a month was over, oh, well, you know, it might take three months. And then three months mark, it was like, Well, you know, it might take you six months. And I remember thinking oh my goodness, six months is just an unthinkable amount of time. But then once you start getting into years, you're thinking - I would have took the six months. 

But it's this kind of it's uncertainty, isn't it? You know, if you break your leg for example, you end up going to your hospital and they say, Okay, well, we're going to do this to you. And in six weeks, you're going to be okay. And you know, not that that isn't an unpleasant experience, because I'm sure it is. But you've got that prognosis, you kind of know how things are going to play out. Whereas this, you just don't. 

Sophie Reynolds  
Particularly people who are inherently fueled by timelines and goals and targets. I just needed to know what I was dealing with what I needed to, I wanted a plan of action, how am I going to help myself? You know, if you had the flu, it's going to last 10 days, you need to take x y Z medication every day, you need to rest and I promise you by the end of it, you will recover, you'll be fine. There was none of that. I just wanted, you know, a shining light coming down on me and saying This is what's going to happen, but you're going to be okay. There was none of that. 

Jackie Baxter  
Yeah. And you know, that's traumatic in itself, I think. So, what happened next?

Sophie Reynolds  
I don't know if I even recognize things as helping me at the time, because as far as I wasn't back to my normal self, doing exactly what I was doing before, I wasn't better and nothing was helping, in my mind. I was in a two year graduate program. And if I quit, or I had too much time off, then I wouldn't be able to complete the program or my masters. So I had a real incentive. And, you know, I think it was a double edged sword, you know, it was both a motivation to get better and to just crack on with life. But at the same time, I think it hindered my long term recovery quite a bit. 

So I had to get back into work. Within a couple of months, I was back at work. But that doesn't mean I was better, doesn't mean I was feeling good. I felt pretty horrific all day, every day. It was just about getting to work. And getting back and getting straight to bed. I was in bed by 8pm most days. 

They adjusted my duties. So I wasn't on a big wing with lots of prisoners, like in high adrenaline, like attacks and incidents. I was on much quieter units, I was sitting down like doing sort of prisoner observations where I'd sit and write notes about how they were behaving, how they were feeling. And I was able to read and just take it a much slower, so they were good in that sense. And that sort of helped me calm down a bit, and force myself to sit still, like I really couldn't do much. 

So actually sitting and reading - that was a big part of my early day recovery. And I was lucky that I could read, I know a lot of people can't or find that difficult. I think if I was at home trying to read a book, thinking about my illness and how rubbish I felt I probably wouldn't have been able to, but I was stuck in a confined space, you know, doing like a duty, like a civil service duty, watching prisoners, but I had people I needed to look after. And being - it was on the mental health unit in a prison, sitting there reading with them, talking to prisoners, it kind of took me out of my own head. So I think early stages, that was helpful, as difficult as it was, just having something to focus on that I needed to do every day. 

And then I couldn't bear the idea of not doing any exercise. So I started Googling low impact movement and things like yoga. I would do these a few times a week for 10 minutes just lying on the mat. And no, don't get me wrong. I was addicted to exercise. So this is nothing I felt like doing or felt able to do. I just mentally had to tick a box and say to myself that I've done something, you know, I haven't just sat still all day. I was really battling with quite difficult, sort of. I was diagnosed with an eating disorder at the time, but that obsessive, like need to exercise and to move my body was so inherent in me, I just couldn't shed that straightaway, even though I was really chronically ill. 

And so just doing every few days during a 10 minute yoga, abs. Pilates was eventually something I came to find on YouTube. And then that leads into the next part of the story because that's what I started doing really regularly. And it became more than just exercise. It became like the really slow, mindful practice where I was breathing. And that and I've been since learned is a really powerful way for calming your nervous system, for leaving the sympathetic nervous state into the parasympathetic nervous system. And it was really integral to my recovery. 

Jackie Baxter  
Yeah, it's fascinating what you're saying there because a big part of my recovery was finding breathing and finding kind of gentle yoga and, you know, like you I was so into exercise, it was so important to me to be exercising. And yet that was one of the many things that I just couldn't do or if I tried it didn't end well. So I discovered yoga and it, it was a way of moving, but in a way that I could manage. Actually, as I started doing more in really learning about what it actually did, and the nervous system and how all of this stuff kind of worked together and, you know, played into what was actually going on with my body, it was kind of like, Okay. 

So I've actually, more recently thought exercise is probably not a helpful word here, I was preferring to call things movement. Because, you know, as humans, we need to move. And yet, when you're unwell with something like MECFS, like long COVID, you know, that's the one thing that you can't do, or not the one thing, one of many things that you can't do, and yet it is so important. So it's finding some movement that you can do. 

But for me, certainly, it was like having to bring it down to such a low level that I wouldn't have called it exercise, which is why I've learned that actually movement is a more important word. So you know, for some people that is like stretching in bed, literally just moving their arms a couple of times a day or something. And that is important, but it's got to be so tailored to that person. I think 

Sophie Reynolds  
You're right, I have also moved to calling it movement, because I think exercise has connotations of being strenuous aerobic, fat burning, you know, all of these things, which it doesn't need to be, Like our body - there are benefits of doing that. No doubt, particularly with your heart and cardiovascular system. But movement, like moving your joints, moving to feel good, to activate your brain, to find your mind body connection, to strengthen your muscles, but in a nice sort of low impact way, isn't needed for for bone functioning, for bone density. You know, there's so many other reasons to move other than to feel a sweat and a burn. 

You know, pilates, interestingly, was started in the Second World War by Joseph Pilates. And he used it to rehabilitate soldiers in their hospital beds, so he'd actually use equipment, he'd attach what we now call like the reformer, pieces of equipment to people's hospital beds. So they could like you know, clasp their hands onto a bar and then lift their shoulders and neck off the hospital bed. That activates your core, it lengthens your arms, you can feel it in your shoulders and your mid back. And then you're moving your spine as well, mobilizing your spine, your neck, your head, all these things that are good for you. healthy functioning of the body, but from the hospital bed. So it is a rehabilitative exercise for many illnesses, but for just general, healthy functioning of your body.

Jackie Baxter  
Yeah, and that's amazing that that's actually where it began, was as a sort of therapeutic thing. That was literally where it began. 

Sophie Reynolds  
I know, and then I wonder why I helped me recover. It was always meant to be there! And it should be encouraged. I think. Yoga is often encouraged for people with long COVID or MECFS. Because of its spiritual properties, for that mindful property of it. But Pilates has always been there. It's just not prescribed as much for this illness. It's prescribed for muscle tears or for bone. When you go to a physio with an issue - injury. That's the word I'm looking for. That's when it's prescribed and not for mental illness or not for MECFS. 

Jackie Baxter  
Yeah, yeah, definitely. What's the difference between yoga and pilates? 

Sophie Reynolds  
Well, that is a good question. And I have actually written a whole article about this. My understanding is that yoga is a much more spiritual practice. i think it originated in India, relating to like religious gods. And Pilates has always been a way to rehabilitate, to strengthen, to tone your muscles. And the difference sort of if you're practicing them as yoga, you hold a lot of poses. There's a lots of different types of yoga as well. Depending on what you want, how strenuous you want it, how fast moving you want it. Whereas Pilates, you do a lot of repetitions of exercises to strengthen specific muscles. The exercises are targeted at specific muscle groups. 

Jackie Baxter  
Interesting. Sorry, that was a tangent. 

Sophie Reynolds  
You can start off slow and then build up into more advanced poses like in yoga. When I started doing yoga YouTube videos, I found it really hard to concentrate. And I know that's probably why, exactly why it was good for me at the time to actually focus my mind. But Pilates, it had the same effect, like it is a really mindful practice, particularly with that breathing that is so integral to every exercise. You need to exhale on the exertion part of a movement. So you engage your core, support your spine, your pelvis. 

So it had the same effect for me, like that breathing technique, I was able to calm my mind. But also, I don't know, I found the repetitions of exercises, it kind of related more to what the exercise I was doing before I felt the effects of it more. I found it easier to concentrate in classes. That was like a real aim. You know, like, we spoke about being target driven. But having eight repetitions of something, I knew what I was doing, I knew why I was doing it, the benefit was quite obvious and through the instructor speech, why I was doing each movement. 

Whereas yoga, I found kind of like strong from one move to the next, you're up, you're down, you're upside down, I found it really hard. The poses were really difficult. And there was a lot of holding positions, a lot of stretching, which I just, I didn't relate to, but it's 100% personal choice. I still occasionally practice yoga. But Pilates has been my thing. And I'm sure everyone will be very different with what they find useful.

Jackie Baxter  
So we've talked a load around all sorts of stuff. Let's talk about recovery. What did you find that helped? Or how did you find the things we've talked about already - how did you find that they did help you? 

Sophie Reynolds  
Gosh, that's a million dollar question. I think first of all, I'd like to caveat what I'm about to say by saying that I'm not fully recovered. And I still suffer more than most people with like the common cold or average illness, it takes me longer to recover. And I still can't do everything I did before. Not that I necessarily am aiming for that. But I internally see that as like a marker of my recovery. 

I think there were a few things that have really helped me, and that first one is understanding my nervous system. And the way I react, the way my body reacts to being in a fight or flight response to even the smallest thing that happens in my life. And that can be like being late, or being triggered by someone emotionally or I feel stressed and overwhelm I think more than the average person. And now I'm more aware of this, I can really tune in to the way my body is responding. 

So even just now we had trouble with the Wi Fi and someone walking in when I was recording and my reaction, I can feel it in my body, I can feel my legs getting heavier, I can feel it in my chest, I can feel it in my face getting warmer. And these are all of things that I probably never realized before I got ill. I was working in a really highly stressful environment. And I think I was in this fight or flight response every single day. But I wasn't aware of it, I just was powering through it and ignoring every sign my body was giving me. 

And those signs are like being ill quite regularly, feeling stressed and overwhelmed at the smallest little thing, bursting into tears, being incredibly emotional, being obsessed with the regime to keep some sort of control over my life, because everything else was seemingly out of control. So I think understanding my reaction, in those situations, understanding how to calm myself down is the single biggest factor that's helped in my recovery. 

And the first thing I learned to the optimum health clinic that really stuck, was the stop response. So I think we had to pretend we were in a supermarket and we're feeling the overwhelm, we can feel the symptoms arising, the legs getting heavier, the pit in your stomach, just twisting in knots. And to just practice this simple strategy, which was to place your hands on your chest, take a deep breath in and out and just say, "stop." And notice the calm and the immediate change in your body as this is occurring. 

And I don't know whether it's just through that I was told that that would help or whether I will, I think I actually did feel a difference from doing that. And that sort of led in to Pilates, because a big fundamental part of Pilates practice is is inhaling through the nose out through the mouth through lateral breathing. So feeling your ribcage expand on the inhale as you exhale during your belly in to contract your core. And this practice of like that really mindful breath and connecting the breath with your body's movement really helps calm my mind. 

People often say Do you feel really knackered after a few hours of teaching? And I do but no more than the average person, I definitely don't feel like I've relapsed or I'm putting myself in a stressful situation or my symptoms are worsening, because I think the whole way through the practice I'm breathing so mindfully. Everything we do is integrated with the breath. Every exertion is integrated with an exhale, and really elongated exhale. So I'm really getting out and calming my mind and entering a parasympathetic nervous state, which is what you're supposed to do, what you're supposed to practice in your recovery.

Jackie Baxter  
I love what you're saying about understanding. Because for me, I had become unwell with all these symptoms - how can I had suddenly overnight almost have come down with 20 different new medical conditions? It's like, you know, there's just so many different things going on with your body and you just don't understand because how could you? Most people don't understand about these things until they're, you know, forced to do so. 

And then it was suddenly, once I did start understanding about the nervous system, it was just like, oh, it was such a lightbulb moment, because it was like, okay, so it's not that there's 20, 30, 40 things wrong with me, it's that there's one thing that's not functioning correctly. And then once I understood that, it was kind of like, right, okay, so now I have something that I can target. And it also explains why the pushing through method didn't work. Which, you know, I knew wasn't working, because it had been making things worse, but I also hadn't got any better ideas. So yeah, realisation, that light bulb.

Sophie Reynolds  
And the first step right isn't being able to control that, it's just being aware and noticing the way your body reacts in situations. And those are your body's signals to say, actually, maybe these people you're hanging out with aren't serving you. Or maybe this activity that you're, you know, being extremely persistent with, which you think you enjoy, which you think is going to make you really successful, actually doesn't align with your values or who you really are as a person. And once you start to put those little pieces together, you're like, oh, there's things I can really do to help myself. 

And then the next step is probably trying to calm yourself in those situations, when you feel the symptoms arising, when you feel your nervous system in high alert, then you can just do your breathing or place your hands on your chest and say, stop. And I think that that process, that sort of reaction, or that strategy that I was talking about, it just signals to your body that it's okay, that you're safe, that there's no need for you to be in a fight or flight state. It's just your body overreacting to a fairly everyday situation that other people may not go into fight or flight for. 

Jackie Baxter  
Yeah, absolutely. And I think one thing that that I found quite useful was understanding that my body was doing what it thought was right, it was trying to protect me. Tt wasn't that it was like willfully, like, trying to make things worse, just to spite me. This is the body's protection mechanism, it's a defense system. And it's doing what it has been doing for millennia, to attempt to protect me. It was more than it was just a bit wonky. And that actually, you know, when someone came up behind me, and I didn't notice them, and I went, Whoa, that wasn't supposed to put me in a crash for a week, it was supposed to make me go, Oh. As a really stupid example.

Sophie Reynolds  
It's a really good one! 

Jackie Baxter  
Yeah, it was almost like, you know, kind of understanding that made it less terrifying when it did happen, I think. But I also love what you're saying about the kind of, once you kind of understand a bit about what's going on, you're able to kind of start working out what you can do about it. And I just think that that's a very empowering kind of thing. Because there's so much about you know, sitting and waiting for medical professionals to help, and you know, researchers and things you know, there's loads of research going on, but nothing's really come back in a kind of like, take this and you'll be better kind of a way. 

You know, there are things that can help certain symptoms and all of that was you know, certainly with management and stuff, but in terms of like a cure, I think we're still a very very very long way away from that if it ever comes. But actually being able to go Hah, but if I do this to target my nervous system, and that works, interesting, okay, that really helps. So it's kind of like you've got to feel your way and you know, listen to what other people are saying and try things. But it's that trying without judgment, isn't it that can be very, very difficult when you are sick and frustrated, and you just want to find something that will make you better. 

Sophie Reynolds  
Exactly and not feeling frustrated when you try something that you know has worked for someone else. But for you, you didn't reap the same benefits, and that's okay, like the solution to MECFS, long COVID is so different for each person and every person needs a tailored solution. You know, everyone will react differently to different things. You know, you cold water Swimming has really helped for you, but the times I've tried it or particularly early on in my recovery, even if it was just a cold shower. I felt probably what worse afterwards than I did, because I had this huge energy rush. During it, I was fine loving it, really energized. But when I came out, I was absolutely knackered, it just drained me. 

But perhaps, you know, my approach to it wasn't the same as yours. And going in, going in with a different mindset. It's got to be something that relates to what you've enjoyed historically. And, you know, if you're the sort of person who loves being outside, who loves adventure, which I do, by the way, so I don't know why the cold water swimming, maybe because I did it in my shower. That's why it didn't work. If you're that sort of person. Then maybe that's more likely to help you. Like the same with me, I've done a lot of sport before I got ill. 

So something exercise related, albeit a much more mindful version of what I was doing before, did help me because it was something I naturally enjoyed. It was something I felt like I could really get into my flow state with, that I could. You know, that's the flow state of something I've also really got into since recovery, is something that combines concentration with a skill that you're you're learning, you're grasping over, you know, a short amount of time, and complete sort of immersion into the activity, and like separation from your everyday life or what you were doing before doing it. 

And Pilates is that for me, I'm learning something new, I'm creating a routine to teach. I'm feeling really connected to my body, and it took me out of my head and into my body. I'm self employed currently. And I'm seeing it arising a lot more, like finding that state where I overthink a bit too much, overwork a bit too much. But my body gives me this it's an amazing thing. It's your body's own alarm bell saying no, no, no, you're pushing it too far. Take it back a step. So I'm almost lucky that I have that little alarm bell still that warns me if I'm taking it too far.

Jackie Baxter  
Yeah, I can totally relate to the sort of overthinking, over working, over planning, this is very much something that I have always done, but I'm now much more aware of. And I think, something that you just said there kind of resonated with me. Because, you know, we didn't ask for this illness. And it was horrendous. And I wouldn't ask for it again. And I certainly wouldn't wish it on anybody else. But - there are people that say they're grateful for their illness, and I definitely wouldn't go there. But at the same time, it has kind of forced me to really look at certain aspects of myself and my life and what I'm doing, and what I want and what I really value. 

So I suppose Yeah, certainly I'm able to say, well, it's given me an opportunity to make some changes that I didn't realize I needed to make. And yeah, okay, I wish I hadn't have had to have gone through this to have got to that point. But at least if I can kind of look on it as an opportunity, it kind of stops me from looking at it as the kind of Well that was a complete waste of three and a bit years, which it was. But I always kind of like to look at things in a slightly more positive light, because I can't get those three years back. So what's the point of dwelling on them too much, but absolutely learning from them, I think, for me is a key takeaway.

Sophie Reynolds  
Yeah, I totally relate to that, the more resentful you are towards having it, I think it's all linked up with recovery in your mindset. So you've got to be positive, and turn it into a learning experience, so as to keep moving forward and not be stuck in that resentment. Because I think a common theme amongst people I've met who have had ME, and this is a sweeping generalization. 

But from my experience talking to people, a lot of these individuals have been leading a life before being ill that wasn't completely aligned with their authentic self. And whether that was just like trying to do something that they felt was for their ego, or for how they wanted people to perceive them, you know, being in unhealthy relationships, or having not fully recovered from things that happened during childhood, or later on in teenage years. And, and that's what sort of causes the nervous system into this overdrive, into this sympathetic nervous state, which isn't conducive to good health and well being.

Jackie Baxter  
Yeah, and I think certainly, for me, understanding some of those things that came before, you know, my long COVID journey didn't begin with me getting COVID. It began long before that, and that sounds similar to what you're saying about maybe yourself, and other people that you've spoken to as well. 

I also think it's very interesting how your perspective on this changes. Because if someone - in fact, someone did say to me, I think it was the first recovery interview that I did. Someone else who'd recovered and they were telling their story. And I paraphrase, but they said something along the lines of, I'm glad I got sick there's so many Silver Linings because it's given me a better quality of life. And I'm really grateful for my illness. You know, it was it was that sort of thing. 

And I remember just like, if we'd been physically in the same room, and I had enough energy to do so, I would have slapped her. Because I was like, How can you say that? I'm sitting here, I haven't found things that helped, you know, I'm still, you know, been ill for however long and you know, it was just this kind of like, I just can't understand how somebody could think that. And then over time, you know, as things did then start improving, as I did find things that helped, as I started to come out of the illness, and I'm now fully recovered. And looking back on sort of the last four months of building my life back. 

I'm still not saying thank you illness, you know, I'm still not saying I'm glad I had it, because I don't think I'll ever be glad I had it. But yeah, it's very interesting that I'm now able to, just to look at it in a slightly more positive light. And like I said, about this kind of like feeling like, it's an opportunity that I wish I didn't have to have had, but, you know, so yeah, 

I think because, you know, definitely you know, I think, you know, if there's anybody listening, who's maybe, you know, having a terrible day today, and listening to this conversation and going These people like they're talking about, you know, being positive, and you know, how the illness is great, because it gave you this and it gave you that, and I think that can be quite difficult to listen to if you're not having a good time. 

So I think it probably is useful to acknowledge that absolutely, for me, my perspective on that has definitely changed over time. And that it can be very difficult to try and remain positive, trying to, you know, to try and keep doing the things, when you're still feeling awful. It can be so tough.

Sophie Reynolds  
I think you need to give yourself so much self compassion, that it's your body's way of trying to protect yourself, and cope with the stresses of the world. In quite an abrupt and severe way, we'll give it that. But it is you trying to look after you. And there is hope for recovery though, you can fully recover. People have, people still do all the time. It does take time, particularly to learn what your triggers are, and what helps you specifically, rather than what helps someone else. But having faith that things will change, and you will get back to do some of the things you did before but maybe not all of them, because maybe not all of them were totally healthy for you. 

And I think my biggest words of advice would be to - not that anyone's asked. But like, having been through it. I think my biggest advice is find something that energizes you, that makes you feel excited, and puts you in that flow state where you can be creative, you can be totally immersed in what you're doing. Whatever that may be. For me, it was Pilates. I keep circling back to that. 

But the people it's introduced me to, the skills I've developed through it by standing in front of like big groups of people and talking and teaching and, and helping people reach their goals and feel the best versions of themselves. That, selfishly although I'm helping other people in that process. It's been so instrumental in my recovery. It's challenged ideas I had about myself, it's it's yeah, it's put me in difficult, like uncomfortable situations, but I'm learning a huge amount from it. And selfishly, it's helped a lot in my recovery.

Jackie Baxter  
Yeah, and it sounds like I mean, I know you said that, you know, there are still elements of your life that aren't 100%. But it sounds like in so many ways you are more resilient than you were before. Even if there is kind of the blip.

Sophie Reynolds  
Well I have more self compassion. I don't feel symptoms and think oh, why are you so stupid? Why haven't you found that key to recovery yet? Why? Why are you still experiencing this? What's wrong with you? Why you, out of all your friends who have developed this? 

I kind of approach it with like, Oh, my symptoms are here. What's that telling me? What could I maybe do to be kind to myself today? What can I do to take it easy? And knowing that that's not a permanent state, knowing that you just have to ride the wave. It's a bit like with mental health. 

I learned the analogy that it's a wave. And you know, you may have peaks of anxiety or low mood but that you'll just ride out the other side. And tomorrow's a new day. It sounds so corny, but it just, again this has been a huge learning in this process is that not everything is is stuck. Not everything is permanent, it won't continue forever. That you will ride the wave and there will be better days. And those few better days will turn into many more better days, until you finally reach recovery. 

Jackie Baxter  
Yeah, absolutely. Yeah, kind of keeping that faith. It was really interesting what you were saying just there about mental health, kind of echoing the physical health in terms of the wave. Because certainly something that helped with me, I mean, I am a total perfectionist, and this is something that I am still working on now is this concept of good enough. And I think this is something that a lot of people have maybe noticed in themselves.

Sophie Reynolds  
Yeah, that's a really common trait for people with MECFS. 

Jackie Baxter  
Yeah, and I think it was, it was the kind of idea that, like, what is healthy, you know, what is recovery? And, you know, I am so much healthier than I was before. But I still have the odd thing, here and there, you know. I have more anxiety than I did, or I certainly am more aware of anxiety than I was before. 

And, you know, that doesn't mean that I'm not recovered. It just means that that's something that I'm still working on in my life, in the same way that every single person has something that they're still working on in their life, or if they're not, then they certainly should be. You know, nobody is 100% absolutely perfect in terms of health. Everyone could be slightly better. It's just that I've now reached this point where the scales have kind of ticked over into, Yeah, I'm good. Whereas before, I was very much, not good. You know, and, and everything. So to that concept certainly helped me,

Sophie Reynolds  
I think, so often, we tend to mask like anxiety or low mood with other behaviors. That you probably did have anxiety before. You know, without a doubt being ill, and the trauma of getting ME and not knowing what it is, and doctors not being able to help probably accelerated that anxiety a little bit. But I think having the illness makes you so much more self-aware of your feelings, your emotions, your reactions to things, physical or mental. And, yeah, having that awareness is so crucial to being able to move forward.

Jackie Baxter  
Yeah, definitely. Because I mean, whether we're talking about physical or mental symptoms, I think, you know, what we're told through illness is to listen to your body. And, you know, this is kind of annoying when it's telling you all these conflicting signals, and you don't really understand and it's, you know, constant stuff coming at you. 

But what I think I realized over time, was that my body had been screaming at me for years, and I hadn't been listening to it, because for whatever reason, I didn't want to. And then I was put into this position where I absolutely had to. S it's now coming out of this and it's kind of like, right, I now need to listen to my body, but I need to balance this out with not being hypersensitive, which, you know, I've kind of talked about this a bit before, where this kind of adjustment period from recovery to kind of, you know, moving forward with your life. 

And I found it a lot more difficult than I expected to, to kind of come out of the illness, and to kind of just - I hate the word normal, but it's kind of like, you know, what is normal? In terms of listening to things, reacting to things? When is it good to push, when is it good to back off? All of these kinds of things and, and looking at it through a quote unquote, normal healthy person's kind of lens, rather than a sick person's lens. And I've found that whole transition to be much much, much more difficult than I expected but also very, very interesting from a kind of sort of person who just wants to know the answers.

Sophie Reynolds  
Yeah, and wants things to happen quickly, wants the results, which is very tied into being a perfectionist. I know I'm definitely like that. I think having the sort of personality type the type a perfectionist very driven, but channeling them into something positive, without that really negative self talk, without overworking, without trying to make things happen too quickly. 

For it to be like a slow burner, but slowly it will it will work. But I'm a big culprit of like wanting things to happen straightaway, being quite impatient, wanting to see results and moving on to the next thing if the first thing doesn't materialize fast enough. I'm really having, at the moment, to challenge those thought processes and be compassionate and patient with myself, and with progress made.

Jackie Baxter  
Yeah, absolutely. The thing that I usually ask at the end is What advice you might give to other people, or you might have given to yourself at the start. But I think you've already done that, which made it flow really nicely. 

Sophie Reynolds  
Like, what do people expect from this podcast? What do people want to hear from me? What advice do I even have to give? I don't know. Only that I've been through it, and I can share my personal experience, but I'm not an expert. So I'm like, What authority do you have to tell other people how to recover? 

Jackie Baxter  
I can't remember where I picked it up from but there's something that I've used a lot, both in my teaching and with people that I've been speaking to. And it's that you are the expert of your experience. Which I think is so useful, because you are - nobody knows your experience and your body and what you've experienced through your illness better than you do. 

Sophie Reynolds  
mmm

Jackie Baxter  
Well, thank you so much for joining me today. It has been amazing chatting, and it's been so fascinating hearing about all the things that helped you in your recovery. So I hope that they are helpful for anybody listening. So thank you so much for giving up your time.

Sophie Reynolds  
No worries. Thanks so much for inviting me on, and give me the chance to share my experience of ME and CFS. And I hope what I've said is helpful to at least one person. But do get in touch, if you have any questions about anything I've said, or want to do some low impact, slow movement. We'll give it a go at least, anyway.

Jackie Baxter  
Absolutely. And I will drop all those links into the show notes. So if anybody is interested in following that up, then absolutely. 

Sophie Reynolds  
Thank you

Transcribed by https://otter.ai