204 - Simon Harrison - "Leaving ME Behind" and Finding Life Again

I talk with author Simon Harrison about losing an active life to ME, finding a diagnosis, and rebuilding health through pacing, meditation, and a bold year seeking light in Portugal. The story is honest about setbacks and fierce about hope, with practical lessons you can apply today.

• early denial and sudden onset symptoms 
• shrinking life, sensory overload, fear 
• self-experimentation with meditation, breathwork, gentle movement 
• diagnosis of ME/CFS and reframing recovery 
• pacing, window of tolerance, damage limitation 
• why more light and a change of scene helped 
• recalibrating normal tiredness vs post-exertional malaise 
• progress through small wins, mistakes, and self-kindness 
• support from family and the cost of care 
• hope as a practice and incremental gains

Connect with Simon at https://thrivemindfulness.co.uk/ where he also works with those with fatigue-related conditions. 

"Leaving ME Behind" can be found here

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

(music credit - Brock Hewitt, Rule of Life)

Transcript

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Jackie Baxter 0:45

Hello and welcome to this episode of the Long Covid podcast. I am absolutely delighted to be sitting here today with Simon Harrison, who has not only recovered from ME but also written a book about it, which I'm actually holding here in my hand. It's a really great book called Leaving ME Behind, which I would highly recommend. And I think we're going to get into a lot of what you've written about and what you experienced through that kind of journey. So, Simon, I'm so delighted to have you here today. Thank you so much for doing it.

Simon Harrison 1:18

Hi, Jackie. It's great to be here. Thank you.

Jackie Baxter 1:21

Perhaps you would just say a sort of a brief overview of sort of who you are and um maybe what led you to write the book.

Simon Harrison 1:31

So, what led me to write the book? Well, I kept a journal. Um, I was I was six months in thereabout to

Meet Simon And His Book

Simon Harrison 1:41

the illness of what I would later know was Emmy. And I just had this nagging feeling that I should be writing about this. I don't really know where that came from, but I didn't have an awful lot of psych to do anyway, so it made perfect sense to um to journal what I was going through. I didn't really have any grand designs at that stage of creating a book from it, but as I got better and better, and I was in various therapies, my psychologist and also my GP just coincidentally they didn't know each other, but they both said, Have you thought about writing me about this? And I thought, well, I've been keeping a journal, so maybe that's what I should do. So here we are, the book is done, and I managed to finish it.

Jackie Baxter 2:31

Absolutely. And it's funny, isn't it, sometimes when um it's like the the buses thing, you know, no buses for ages and then three buses come at once. Um, and you're saying that actually two different people said to you, you know, quite close together, Did you think about writing a book? Um, and it sort of makes you think, doesn't it, when uh when you sort of see it twice kind of thing. Um and um, you know, you you started off by saying um, you know, what you would sort of later find out was ME. Um at the start. I mean, you don't really know what it is, do you? Um, you know, you sort of become ill and everything just feels overwhelming and chaotic and terrifying, certainly was my experience. It was a very, very scary thing. And um there was an amazing phrase that you had, um, I think it's very early on in the book, talking about a sea of denial in a sinking ship of optimism, which is just an absolutely beautiful phrase that I think perfectly kind of encapsulates that early stages of everything's gonna be fine, it's gonna be fine, give myself a few more days, it's all gonna be okay. And then that sort of steadily sinks. And you know, certainly I had an awful lot of denial before I kind of was able to settle into that kind of okay, there's something going on here that maybe I need to pay attention to rather than try to steamroll her over. Um, so I don't know if you're able to just say a little bit about that kind of stage of how it all began.

Simon Harrison 4:11

I was 34, this was 2013, and I was very fit, very active, and healthy too. I'd never been seriously ill, I'd never broken a bone, I'd never been hospitalized, which is a slightly minor

Sudden Onset And A Sea Of Denial

Simon Harrison 4:30

miracle in itself given the sorts of hobbies I had at the time. I was mountain biking, I was road cycling, I was snowboarding, I was surfing, I was doing all of this on a regular basis. And holidays for me were never to lie on a beach, it was always to take my bike, go cycling up mountains, racing down mountains, you know, all of this sort of thing. So I was very, very active. And so really the denial was that I thought, well, this just can't be happening to me. This is this is just not gonna happen. This is not what I had in mind for life at all. So I was really in a lot of denial, and I had um going back to when it started for me, I had what I would describe as a seizure. That was never confirmed, but it that's that's how it felt. Where my mind just felt, my brain just felt as if it was on fire. And I thought, well, this is either how it feels to go mad, or maybe I'm having some kind of breakdown or something. I really had no idea what was happening. I didn't feel like I was under any particular stress. I I was running a business, but that had been established for a number of years. And I was working hard, but I enjoyed it. I really enjoyed what I was doing at the time. And so I didn't really know what hit me on that day. And once it passed, everything changed in that moment. I I had it's like my senses were cranked up to the maximum. I developed chemical sensitivities, I was sensitive to light, to sound, to vibration. Um, the fatigue really begin to kick in quite early on too, uh, as did the brain fog. And I just as time went on, I was collecting more and more symptoms.

Jackie Baxter 6:27

Yeah, absolutely. And like, you know, I I think so many people listening will be able to relate to so much of what you've said there. Um, you know, then when you said I I wouldn't sit on a beach for a holiday, I'm just like, yep, you're my people. Um, you know, and there's nothing wrong with doing that, but it's just again not the sort of thing that I would felt or felt myself drawn to. And um, you know, you're you're too fit to get sick, you're too young to get sick, you know, all of these things that other people possibly said to you, and you would maybe be saying to yourself as well, that kind of play into that kind of sense of denial. This can't be happening to me, this isn't in the plan, this was not how life was supposed to go, kind of thing. Um, but you know, ultimately maybe entirely true that that wasn't how you planned your life to go, but also completely unhelpful because it's clearly how life is going right now in this moment for sure. Um and how did you kind of find some level of I don't know if you want to use the word acceptance or or something kind of similar to that sort of, I mean, for me it was acceptance of the moment rather than acceptance forever. Um, so that kind of balance of acceptance and hope, maybe. Um, how did that look like for you? And was it something you found really hard? Because I found it really hard.

Simon Harrison 7:55

Oh, absolutely. In fact, I found it so hard that real true acceptance didn't come for quite some years down the road. I thought it for a long time. Um, I thought it really to the point that I believed that I was simply burnt out, and and I just worked on that basis. I thought I'd I'm I'm burnt out, and that's all it that's all it is. That's all this is, and I took comfort in in that. And of course, it was a self-diagnosis, which was completely wrong, as it turned out. And so on believing that's what I was going through, I started to make lots of lifestyle changes. So I started yoga, I started tai Chi, I went to I had Reiki, I had acupuncture, I started doing a lot of breath work, which I know that you're into, and I found that really helpful. And so I it really came from the fact that I'm I've always been quite mechanically minded, and I was restoring classic cars at the time, and so I really treated my body like a restoration project, and so I thought, well, you you have to just take apart everything, and there's no point just restoring one end of the car, you have to just go right through that whole thing top to bottom. And so I think that's where psychological therapies came in as well. And it's important for me to stress that I don't think for a moment that this is a psychological condition, but you have to bear in mind that at that stage of the illness I hadn't sought out

Symptoms Mount And Life Shrinks

Simon Harrison 9:27

diagnosis, and so I was really doing the work on myself and on the computer researching, which again I don't entirely recommend. I think it's really best to see a medical professional. But at the time, I mean, we're talking over a decade ago, I was extremely self-reliant. So asking for help, reaching out for help, I found very difficult. Thankfully, I'm different now, I'm able to. But I'd always prided myself on learning everything my way, doing everything my way, being a perfectionist, getting absorbing as much information as possible and working out how to fix things, whether that's motorbikes, cars, bicycles, houses, whatever I was into at the time. So I thought, well, my body's no different. I'll just find out what's going on for myself and I'll fix myself up. So I I scaled everything back, I was doing all the the things that I've just mentioned, and my symptoms began to retreat slightly. I I still I wasn't I wasn't well at all, but I was able to function on a much lower level. So my my window tolerance had really shrunk. Um, and I going back to the denial, I was in a huge amount of denial that this was going to be any sort of long-term health condition. I thought perhaps a couple of months I'll be I'll be fine. I mean, even a couple of a few weeks after having the panic attacks and waking up during the night, um sweating and having all sorts of peculiar symptoms. I still went on a holiday to the south of France with my road bike. It's it's crazy. And I thought, well, I'll I'm just I'll go cycling, I'll just carry on like nothing's wrong, you know. So I I did, and uh it was I was on that bike ride and I just couldn't I couldn't do it. I was you know, I was broken. I I couldn't cycle as far as I intended to. I told my wife that I'd be gone for an hour or two, and I was back in 25 minutes, and I couldn't do anything more.

Jackie Baxter 11:38

It's impossible, I think, for anyone who hasn't had this experience to understand what that feels like when the body literally hits a wall and shuts you down. It's not that you just need to buck up and stop being so lazy and pull yourself together. It's that that literally, you know, it's like someone's pulled the plug out of you. And I think, I mean, you know, I've been recovered now for about two and a half years at the moment. And it's getting harder and harder to remember quite how devastating that is when that happened, you know, that literally shuts you down and you can't. It doesn't matter where you are, if you're in the middle of Tesco's, if you're out for a walk, if you're sitting on the kitchen floor, it doesn't matter, whatever you are, you know, the power's gone. And uh it's um, I mean, it's obviously physically extremely distressing. Um, but I think, you know, you you touched a lot on the kind of psychological side of it as well, which I think is important because it is mentally such a difficult journey to go on. You know, like you know, it sounds like your sort of lifestyle before you became unwell was was kind of quite similar to mine in the kind of, you know, you're you're always on, you're out and about, you're exercising, you know, you're you're living life to the full, right? And then suddenly, almost overnight, everything gets ripped out from under you. Your entire being changes. And there is nothing in your life that that doesn't affect, you know, your work, your ability to exercise, your ability to socialize, you know, your financial situation, you know, your relationship with others, your family, um, you know, like everything is affected. And it's it's so difficult, isn't it? I think to come to terms with something like that. And the sort of emotional side of that, I think can be just as hard as the physical side on some level to actually deal with. Um, because you know, we I don't know, you can't see emotions, you know, some of the physical symptoms you can't see either, which is why it's challenging. Um, but you know, the emotions are so inside of you that people don't really get, I think, what it feels like when your identity is just blown up.

Simon Harrison 14:40

That's right, it's so true. And I remember a moment where I was um standing on a chair. This was just a couple of months into it, and I was changing the light bulbs in the lounge because they were too bright. And my wife said to me, What are you doing? I said, It's just too

Wrestling With Acceptance And Self-Diagnosis

Simon Harrison 14:56

bright. And and then I realized, what am I doing? You know, what what is this illness that is causing me to start changing light bulbs? But it's like you say, unless you've been there, it's very hard to explain. And and these symptoms crept up on me very very gradually, and they they all came with a huge amount of fear because I would be thinking, goodness, what what's going on now? And the the the denial came from on some occasions a place of optimism in that I was noticing that some days I was fine. Some days I would wake up and I would feel absolutely fine, and I'd think, oh, okay, so that's gone. I'm well, let's crack on, let's get back to how things were. I hadn't come across the the boom and bust cycle phrase, along with many other phrases that I would learn intimately over the coming years. And so I didn't really have a bigger picture, I didn't have a bird's eye view really of what was going on. To me, it was as if my sympathetic nervous system had been switched on and I couldn't switch it off, and so that hence getting into meditation and all of the other things I I've mentioned, because I found that that would help to relieve this those symptoms, that aspect, that feeling of being fight or flight permanently and not being able to do anything about that. So I would listen to mindfulness meditations, and I didn't know anything about mindfulness at this point, and I would just listen to the the guided body scans a few times a day, quite often, and I would just become much more aware of my body, and that really stood me in very good stead for when I would begin the slow process of recovery because I lived entirely in my head until that point. To me, my body was just sort of a slave to what my mind came up with and what I wanted to do next. And so by getting to know my body much better and more intimately, I was able to really make some progress once I was put on the right track by my GP.

Jackie Baxter 17:14

Yeah, and I think that's a really interesting point as well. I mean, I very much can relate, and you know, I see this day in, day out with people that I work with as well, is that sort of disconnection from our bodies. And, you know, I think when we become unwell and everything in our bodies feels so uncomfortable, that widens the divide. You know, we don't want to be connected to that because it doesn't feel good. Um, so we we actually often I think, you know, disconnect further, which is very natural reaction, but not helpful. Um, but I think certainly for me, I was never really that connected to my body in the first place and um, you know, slave to my mind, absolutely. Um, you know, my mind had this way of overriding my body, like, and I'd been doing it for years. And um, and realizing that I think was was a really key part of starting to understand my body and actually listen to it, which was then key to my recovery. Um, and it sounds like you had quite a similar experience where that sort of learning to reconnect with your body or to connect for the first time possibly, um, was actually something, you know, I think it's it's something that is actually really helpful and that allows us to live, I think, a more fulfilling and happier life. Um, but you know, that's you know, when when you're unwell, that's kind of like high in the sky. I just want to feel better right now. Um, but I think, you know, it helps, I think, for both. Certainly, that was my experience.

Simon Harrison 18:43

Absolutely. And that's where I found meditation was so so useful. I'd never been had the slightest interest in meditation until that point. And when I began to try it, I had some extremely positive experiences right at the beginning. And I was lucky to have done so because it meant to me it was a place I could always go back to. So I knew it was always there. I could do if everything was becoming too overwhelming, if there were too many demands, if I was being overstimulated and my symptoms were reoccurring, then I would just take myself off and sit and breathe and meditate and just bring myself back down. And through doing this over so many years, as I would gradually recover, the sense of an intuitive sense of knowing what to do next began to occur. And my my my inner guidance, if

Mindfulness, Body Awareness, And Pacing

Simon Harrison 19:42

you like, that came from came began to come from a place of wisdom in that I would I knew my body better and I knew what I needed to do. And and sure, I still needed to have this almost um athlete mindset in that I would have to question my exhaustion. And again, this was many years down the road once I'd been put on graded exercise therapy, but I was able to recognize what's stopping me. Am I afraid of a setback? Am I afraid of doing too much? And other days when I when I was doing too much, I was able just to notice it a lot sooner. Um, I mean, it was definitely definitely not a very smooth trajectory all the way through. I had lots of setbacks, hundreds of setbacks, big ones, small ones, you name it. But um, by by knowing my body better, I was I was able to take action when I needed to, and and just to rein it back in a little bit. Or to boost it up. I mean, I remember about five years in, I was walking around the block where I live, and it's something that I had to do three or four times a day as part of my recovery, and having the thought that actually I might be able to jog, which was really something. And I thought, okay, that's really nice that I can even imagine what jogging might feel like, or that I can even contemplate doing it. Let's do it next time. And and so I I did, and it would be just a few steps, you know, literally three or four seconds of jogging and then back to walking. But that that's that's how gradual this can be for people.

Jackie Baxter 21:29

Yeah, I I love that. And the idea of sometimes, you know, I think certainly to start with, I think, you know, we the way I see my sort of recovery trajectory was the kind of like down, down, down, down, down, down, down in terms of, you know, doing less, doing less, doing less, doing less, doing less, still, still need to do less? Okay, do more less. Um, you know, and it was, you know, that was the sort of denial phase for me. And then there was that kind of phase of building strategies, starting to find the things that worked, starting to learn a bit about my body and what was going on. And then the other bit of that was then the sort of upwards trajectory of, you know, gradually reintroducing things. And, you know, none of those phases were smooth as you as you so beautifully put, you know, they're they're lumpy bumpy all over the place. Um, but you know, I think certainly at the start, you know, it generally is less, less, less, less, less. Um, because, you know, we're we're still in that mindset of we're fine, you know, we're not going to be sick for very long. This isn't going to be a big problem. Um, you know, we're still in a kind of, you know, quote unquote normal person mindset. Um, but then when we come out the other side, it's the other way around. I think, you know, we're we're kind of we've learned how to be this person in this kind of new body where it's not able to do all the things that we used to be able to do. And it's actually kind of the other way around, isn't it? Of kind of, you know, can I, can I, but safely as well. And it's like, how do you do that in a way that, you know, doesn't crash and burn? And I think it sounds like the answer for you was similar to me, is that you don't do it without crashing and burning. You just try and minimize the damage.

Simon Harrison 23:36

Oh, well, absolutely. Damage limitation. Yeah, it came down to that an awful lot. And one of my biggest setbacks came back, came in uh two and a half years after the initial symptoms occurred. And uh life was much smaller. Again, I was. Working within this window of tolerance that I'd established. And I suppose by that point I had given into it in some sense that I had shrunk my world, but it was, it was, it was a necessary step. And I was also doing all of these things to look after myself as well. And so I was able to just muddle along. And sometimes I got overwhelmed, and I really had to take a back seat on lots of social occasions throughout those two and a half years. But it was this one particular day that I went for a walk and I had another sort of explosion of symptoms, and that was the point where I did finally seek professional help, which I should have done much sooner. But I thought I was managing it, I really did. And when I did go to the GP, I was relieved for two reasons. I was a relief, firstly, that I'd been doing all of the right things to help myself already. So that I was really grateful for that. That was just a lot of research and being open-minded, and like I said, through talking therapies, being able to work through the fact that I wasn't able to accept help and being more open to that. So when I got to the GP, having the diagnosis of MECFS was also, it was a relief in the sense that I had a name for this thing that I'd been suffering for these preceding two and a half years. But I knew it came with the fact that this was an illness with no medicinal cure, and that was very difficult to deal with. I remember getting home and just falling on the bed with this leaflet in my hand that she'd given me, thinking, oh my goodness, what am I going to do now? Because I really thought that I was managing, and the setback and the diagnosis

Diagnosis, Setbacks, And Seeking Help

Simon Harrison 25:49

soon after. I knew that things could get more difficult, and they did, and that actually signaled the hardest part, the lowest point. So we're 2015, 2016 at this point, and things were very challenging. I I suppose I spent about a year in bed and about two years on the sofa on and off. I mean, I wasn't bed bound, but I but to spend that additional time more than most healthy people over the preceding years. So yeah.

Jackie Baxter 26:26

I mean, I I when I became unwell with long COVID, I mean, I was definitely in that kind of denial phase for a long time. And I remember, I can't remember who it was, but there was someone that sort of mentioned, oh, it might be a bit like ME. And, you know, as soon as I heard that, I was just like, oh no, oh no, no, no, no, no. Because, you know, I I'd known a couple of people who had had ME or CFS, um, and I didn't know them well. And in hindsight, I didn't understand their illness at all. Um, but um, you know, they had been ill for as long as I'd known them. So, you know, that absolutely not, you know, so there was total denial there. Um, and you know, I I think there's something about a diagnosis that can give us that kind of sense of belonging, and you know, you can find your tribe and um that sort of connection and people who get you. And I think it can be helpful on some level, but then also, you know, you you do a Google search and you know, suddenly the bottom falls out of your world, and you know, it can feel utterly, utterly hopeless. And it sounds like you maybe had kind of both of those sides of that experience when you got that diagnosis.

Simon Harrison 27:42

Oh, I absolutely did, and it's quite funny what you just said because I I remember having a similar experience. I'm certain I found it what whilst Googling this stuff. And just like you, I read that you know the prognosis wasn't necessarily good, and I thought, well, no, that's not what I have. I mean, I I was in no medical position to make that decision, but I decided on that level that that was not my honest. No, that's it. I'm just burnt out. Uh that's me, that that'll that'll do. I'll take that, I can handle that. But no, it was it was um far, far more distressing than that.

Jackie Baxter 28:21

Yeah, absolutely. Um, now I would love to talk about your trip because, like, I mean, I'm I'm getting that that we are quite similar in quite a lot of ways. And like, what on earth possessed you to decide to drive across Europe?

Simon Harrison 28:41

Yeah, good question. It uh it does sound like not the most sensible thing to do with a chronic illness.

Jackie Baxter 28:48

I mean, it's absolute magic, but like, yeah, what what kind of set that emotion and how on earth did you make it work?

Simon Harrison 28:56

Well, what it was, it was one of my early appointments with my GP, who was just wonderful, by the way. She really was. She was an expert in fatigue-related illness. She took one look at me that first day, and I I proudly read off to her all the things I've been doing to help myself, by which point I was so exhausted I could barely listen to what she had to say in response. But she said, Yeah, this is this is a classic case of MECFS. And then she said, Look, um, what would be really useful is to do the grave exercise therapy is something which I found useful as I say, but I I recognize that that's not um recommended. The recommendations have changed around prescribing that. She said, The other thing is what would be really useful, I think, would be to do your recovery somewhere else, somewhere where it's brighter. She said, more light would help. And I thought, more light, I don't like light anymore. I mean, I love the sun, but you know, I'm finding I'm I'm the guy changing light bulbs. I I my quiet dark room lying on the floor for four or five hours a day, that's really where I am right now. And I I thought that's you know, I can't imagine being. I was in my bubble, my recovery bubble. Um, well, it wasn't even a recovery bubble at that point, it was just a bubble of suffering, really. And when she said that, I thought, no, there's no way. I can't I can't imagine that. I'll just go and sit in the garden sometimes, that'll help. So I put it to the back of my mind, and I took everything else she was offering, and I followed it to the letter. And about a year in, a year after after my initial consultation, I was making uh improvements. I still had a long way to go. I knew that, but I was making improvements. And

A Radical Idea: Recovering In The Sun

Simon Harrison 30:52

I began to think about what she said, and I began churning over ideas and thinking, okay, I've done everything else I can do to help myself. I'd been seeing a dietitian also for a couple of years. I was eating all sorts of things that I would never have eaten before. I was taking all sorts of supplements, I was doing all sorts of tests, doing all of these things that so many of the listeners will relate to. I thought, well, okay, that's one thing I haven't tried. Why don't I try that? Maybe, you know. Who am I to argue? Maybe she's right, maybe it will help. So I was doing my daily walk around the block, and it was pouring of rain, it was in the middle of winter, I was still in the middle of the pacing, and so I was dragging myself out in all weathers to keep walking, to keep my routine. And I got back and I said to my wife, look, I think we should do this. And I said, I will be ready in one year. I don't really know where these came words came from, it was quite funny. It just spilled out on me that evening. I didn't really have any plan at that point, but I knew I needed something to work towards, and I knew above everything else that I wanted to, and I just had to get better. And so that was it. She uh said, Well, okay, we can we can make it work. And I think perhaps she thought that I was joking or that you know I'd forget about it the following day, but I didn't, and that stuck in my mind. And whenever I had sufficient energy, disposable energy, I would dedicate it to that project, which was which to take a year off, a year away in the sun. And so I found a house sitting website, and um I thought that would be the most cost-effective way of doing it would be to some house sitting. So um, I won't give too many spoilers for the book, but um we ended up in Portugal and we had a wonderful year.

Jackie Baxter 32:59

I mean it it sounds it it does sound kind of almost impossible, doesn't it? Like to to be like, yeah, let's just do it and you made it happen and it worked. And like, you know, you you um you you definitely pay tribute to your wife in the book, and it sounds like she was uh incredible support to you throughout your experience, um, but um but also at a cost to her as well, which again I can relate to because you know my partner was wonderful, but it wasn't it it wasn't that it didn't have an effect on him, the fact that I was unwell, and um and I love that I mean it it sounds like you said we're gonna go to to Europe for a year, and she said, Okay, like was it as easy as that?

Simon Harrison 33:57

Well, I I think let you say she was hugely understanding, and the illness had obviously had a a ripple effect on on her and on my daughter, on our daughter, and so she knew how hard I was really trying to get better, and she also knew that if it was going to help. I mean, of course, none of us knew that, but if if it was worth a try, she was she was going to support me through it, and we were going to do it. And um luckily she she agreed that it was a half-sensible idea at that stage.

Jackie Baxter 34:35

Half sensible, excellent. Um, and um I mean you you said just then how hard you were trying to get better, and I noticed this in myself, and again, I I see it in people day to day that actually sometimes we we fall into that trap of trying too hard, and that our body, rather than seeing all of the good things that we're doing as good things, it just sees it as yet another to-do list, which is terrifying. And I'm wondering, you know, I mean, I I had an experience where, you know, I had a week's holiday, we just went somewhere wet in Scotland because most places are wet when you decide to go on holiday. And um, I'm just having a week where I was away somewhere different, and I did feel better. I didn't feel 100%, but I did feel better. And I think it was because I was somewhere else, I was able to, you know, let go of

Planning The Year Away And Support

Jackie Baxter 35:29

the sort of really strict kind of you do this and then that, you know, and all of the good stuff. And I'm wondering if you had a similar experience that, you know, having done a lot of work, you know, put a lot of that foundation in, um, you know, things had stabilized a bit, that actually then being able to let go and just go and drive and be somewhere new and be on an adventure allowed you to kind of um, I don't know, be be that sort of adventurer um and tap into some of that joy. But you know, you had that baseline of all of the practices that you've been doing. And I don't know if it was almost like freeing to get away and and be on that adventure.

Simon Harrison 36:15

Yeah, it was hugely freeing. And I found very soon after getting on the road that the contents of my mind changed. And that was a huge shift. And as much as I needed to be home during those very difficult years, almost instinctively, uh to be somewhere familiar and nurturing and healing and be surrounded by people who care and want to help was definitely important. But I also needed to, I felt, break out of my routine to get some perspective on the illness because it still remained in many ways, and I was still having setbacks. I remember packing the car the day we left and having to have a sleep at my mum's house. We were staying at my mum's side, we rented our house out, and but obviously, sleep, like many other things, was hugely disrupted. And I managed to stop sleeping during the day at that point, but I really had to just give in and I had to just have a sleep, you know, and sometimes you just do. And I I remember sleeping and waking up feeling refreshed, but also thinking, wow, we've got our car packed, we're about to get on the ferry to France, and I'm still sleeping in the afternoon. I don't know if I can do this. But uh I like adventure and I like a challenge, and so we we set sail and we made it happen.

Jackie Baxter 37:49

Yeah. And you know, this kind of like constant readjustment is such a challenge, isn't it? Because, you know, I mean, you know, almost overnight you go from you know, Simon who's mountain biking at the weekend to Simon who's like lying on the floor in the dark, as you said. Um, but you know, even after that, there's these kind of changes. You find something that helps and you see a little bit of improvement, and then you push it too hard and you have a crash, and then you find a whole load more things, and and it's like you level up, and then you level up. And every time this happens, like it's great when you start to feel

On The Road: Limits, Joy, And Restraint

Jackie Baxter 38:28

a little bit more better, but you've got to completely readjust everything, you know, the sort of what can I do safely? What should I not be doing? What's my body telling me now? What does these signals mean now? Everything kind of changes, and it's such a challenge, isn't it, to sort of readjust your expectations? And then it must be really difficult for those around you as well to kind of understand that you're in a slightly different place, but you're, you know, you're not down there, but you're not up here yet. And like, was that something that you found sort of easier on the journey? Um, once you'd once you'd left, or was it just another phase of readjustment?

Simon Harrison 39:13

I'd say it was another phase of readjustment because the symptoms that I had had still remained. I had a lot of brain fog, so driving I I still found quite challenging. You know, I love music, but I wouldn't let anyone put the radio on in the car just yet because I just couldn't cope with that. Just just being on a motorway driving through Europe was really just enough. I'm just working the hard edge, as they say, uh, in terms of expanding my window tolerance. And so, yeah, I was trying to keep conversation to a minimum and yeah, really and as you alluded to earlier, it's definitely another aspect of the illness trying not to let it invade the lives of those around you too much, and trying to mitigate that. I think for me, at least by this point, was uh 2018. So we're with five years, I'm five years in. Um, and I'm I'm at a point where I I know myself well, I know my limits. Um, I I still had the setbacks, they were always part of my my weeks and months, but I was I could predict them, you know, I could feel them coming on, and I knew when enough was enough. Going home early, going out to parties, making sure I was in bed, you know, like Cinderella being in bed by eight, nine o'clock, so that I'm not transformed back into that bedbound zombie that I had been previously. So um it it it was it the challenges remained, but just being somewhere different, somewhere somewhere bright, somewhere new, somewhere exciting. Again, that was another challenging part because I also had adrenal fatigue, and so I couldn't allow myself to get over excited about anything, over enthusiastic. It sounds sounds strange, but uh anyone anyone who's had this will know that yeah, I had to I had to keep my equilibrium at all costs. And so even in inside, I was I mentioned this in the book, inside I was doing carwheels about lots of things, but I couldn't really express it because I just had to keep um keep on on an even keel emotionally and physically and in terms of cognitive and physical output. But as time went on, as I progressed, as I recovered further, I was I was able to have a lot more fun.

Jackie Baxter 41:47

Yeah, and that is something that we lose, isn't it? You know, when when everything does just well go to hell in a handbasket, you know, you you lose any sense of fun, of enjoyment of of those sort of things that make life worth living. Um, you know, and and it's so amazing when we start to get even those tiniest, tiniest little glimmers of you know, of half a smile, of something that makes you laugh. You know, we really treasure those moments, don't we, when they come because they've sort of feel like they've been lost for quite a long time, I think. Um so you talk about, I think, I think you might have mentioned it in the context of um sort of temperature, and you know, you were basically experiencing more sunshine where you were when when you were sort of in Portugal or certainly traveling towards Portugal. And um that kind of normalizing the fluctuation of kind of energy and well, mood and and everything, I suppose, in life. You know, when we have something like low COVID, MECFS, these sorts of illnesses, you have the peaks and the troughs, and the troughs are really, really big. Um, you know, in these sort of fluctuations where we can have one day where you do wake up feeling half normal, and then the next day you wake up feeling like, you know, you're a corpse. And um, you know, that they're not normal sometimes. Um, but actually as we start

Recalibrating Normal Tiredness

Jackie Baxter 43:23

to feel a lot better and you know, move back towards, you know, that sort of doing better, recovered phase, certainly for me, it was realizing that that life is fluctuating. You do have a bad sleep one night, you do have a day where you just feel like you're in a bit of a bit of a mood. Um, you know, things fluctuate, stressful things happen. Um, life will throw stuff at you. And like how did you handle that kind of moving from a place of the big peaks and the troughs and the sort of like, you know, trenches of illness into it's okay that I'm feeling slightly more tired today, without, you know, yeah, sort of normalizing tiredness. And I don't know, am I putting this in a way that makes sense? What how did you experience that?

Simon Harrison 44:15

Absolutely, and that was a really large part of the final phase of my recovery was to recalibrate how it feels to be tired and what level of activity, be that cognitive or physical, should bring about that tiredness and to what degree? And so I'd lost all memory of that, which sounds really odd, but I didn't know how I should feel after a long walk, or if I'd been out to at a party or in a meeting, if I'd been talking to somebody without a break for an hour, how should I feel after that? Am I tired because it's still the ME? Am I tired because it's normal to be tired? I really had to re I had to relearn that. And quite often I would look to other people if I saw people doing exercise, I would sort of look at their faces and and and see how tired they look and try and find the recalibration for myself. And I would constantly ask my wife because she's she's very active as well. She'd get home from a run, and I said, What are you tired? How tired are you? How tired are you? I just did not know, and I just had to really begin that process of relearning, and in so doing it, helped me separate what remained of my symptoms in terms of the fatigue and the brain fog and all the other things which would come as part of the post exertion malaise, and what was genuine, what was to be expected, what was totally normal for a human body to feel after doing something.

Jackie Baxter 45:53

Yeah. And it I think it's particularly difficult, you know, when you've been, you know, you get a cold, and you know, you most sensible people, when they get a cold, will reduce their activity for a few days and then they're fine and they resume activity and all is well. Like you you don't kind of learn that new level of tiredness when you experience something like that. But with something that lasts longer, you know, months, years, um, you know, multiple, multiple years, you know, you do completely lose that sense of what it feels like to be sort of quote unquote normal, tired. Um, but I think we also lose a lot of fitness. So one of the things that I found quite challenging when I was starting in that kind of upswing where I was starting to do a bit more was actually realizing that, you know, walking to the post box, you know, nobody gets tired walking to the post box. But actually, if you have been in a position where you're really not moving at all for some time, you know, actually walking to the post box is like 20 times what you've been doing. So it's like somebody who can run a kilometer suddenly running 20 kilometers. And, you know, you would expect to be tired after that. So actually walking to the post box in that context is a massive increase. So yes, you would expect to be really tired. So it's kind of taking it and putting it into the context of my experience in that moment rather than comparing myself to before or you know, a person who hadn't had this experience. So for me, it wasn't just what is normal tired for this activity. It's actually what is tired for me as I'm starting to move back into actually doing anything. And that added that extra kind of level of sort of complexity and difficulty, and obviously for other people watching you, you know, very difficult for them to get it as well.

Simon Harrison 47:50

There's right, there's lots going on in different levels, separating out, as you say, what what remains of the illness induced fatigue, what's the normal tiredness, and how do we separate the two?

Jackie Baxter 48:07

Yeah, and I I think you know, we we get it wrong, don't we, as well? You know, and and that that

Trial, Error, And Damage Limitation

Jackie Baxter 48:13

has to be okay. I think one of the things I learned was that actually one of the best ways to learn is to do. And in order to learn by doing, you are going to make mistakes. So that's that's gotta be okay. You know, let go of that perfectionism.

Simon Harrison 48:32

Absolutely. Yeah, I I remember being in Portugal one particular week and I was going to the gym quite often. I started going once a week and then I upped it to twice a week, etc. And I found myself in a week where I'd been three times that week already. They were just for an hour, and I was taking the classes as easy as I possibly could. And I remember going on day four, and I was just sitting with my head in my arms in the waiting area, everyone else is sort of chatting and excited about the session and everything. And I just thought I should not be here 100%. And I was thinking, if I could just pull myself together, you know, I was just trying to motivate myself, but it wasn't going to happen. I I just went home, I knew that was the best thing to do, and I just knew instinctively that was the best thing to do, and that I pushed a little bit too hard that week. But that's all part of relearning where the limits are, and also as as you mentioned, moving forward with them and remembering that it's all part of the course in terms of recovery, and and to be patient as well, be patient with with yourself and with the process is important too.

Jackie Baxter 49:54

Yeah, absolutely. And I think you know, one of the things we learn is to listen to our bodies. You know, we we were talking earlier about the sort of disconnection from bodies and you know how we can just steamroller over them when the mind is in control. And um, you know, we we really do learn to listen. And it sounds like you have learned that lesson, you know, in that experience where you're like, no, my body doesn't need this today. Um, I mean you're you're in Portugal, go sit on our beach.

Simon Harrison 50:24

Yeah, I definitely did a lot of that, which really helps. That did help a lot. I I should probably say some sort of medical disclaimer that I'm not claiming that's gonna help everybody, but it I did find it helped me.

Jackie Baxter 50:36

Yeah, absolutely. I think you know, it's everyone finds their own path, and that was that was your path. And um, you know, it's it sounds amazing and uh it will work for some people and it it may not be the right way for others, I think. Um so I think finally what I would love to ask you is um, you know, looking back from Simon now, um, what would you say to Simon at the start of his journey when his world has fallen apart and everything feels impossible? What do you think he would need to know?

Simon Harrison 51:15

I would say be open-minded about what may help you. Um be as kind as you can towards yourself throughout this process. And I use the experience as an opportunity for growth, and that that's that is something I did do. All those endless hours lying in a dark room, lying on the sofa. I like to think that I put them to fairly good use. I worked through various things, past traumas. I got into therapy and worked through a lot of that stuff. Um, because I thought that it might help, and I think on some level it probably did. And to keep hope, just retain hope, whatever

Hard-Won Lessons And Keeping Hope

Simon Harrison 52:19

happens, however many setbacks you get, however many relapses, however hard it is to leave the party early, all of these things, just know that it's all incremental gains. That's that's really what you're working towards, incremental gains. And so if you have to make a thousand compromises, then it's it's part of the process, yeah, and knowing when to push forward and then knowing when to ease off. And this comes with self-knowledge, and that that takes practice, it takes work, but it's certainly what helped me recover, and so to be hopeful, to to remain hopeful, and to to know that it is possible to recover because that's something I didn't always know. I'd like to sit here and say I was entirely positive all the way through, but that's totally impossible. I wouldn't be human if if that was the case. And I had a lot of dark days, and I really didn't know I was gonna get better. I would I I would reach a plateau and I would think, well, this is it, this is as well as I'm gonna get. I bet I I may as well get used to it and and sit here and and try and find the small joys and pleasures in life, and that was very important. And like you say, it it can really bring you into touch with the small pleasures in life, which is the wonderful thing. But I also knew that I wanted to try and get to the next level, and if I did, I did, and if I didn't, I didn't, and it just became this sort of internal game of progress, really, and taking taking a chance sometimes when it was the right thing to do and not not taking chances on other days.

Jackie Baxter 54:08

Well, Simon, thank you so much uh for being here today, for coming and chatting to me, um, for sharing so much of your journey and your story. And please go and read the book. It's a really good read. Um, I'll make sure that all the links go into the show notes um and um everything that you've sent me will go in there. Um so yeah, Simon, thank you so much. I'm delighted that um that you're better, that you're back to life. And I think it's so inspiring for everybody to hear that. So thank you so much.

Simon Harrison 54:42

Oh, thank you, Jackie. It's been an absolute pleasure. Thank you so much.