#28 From Olympic hopeful to Long Covid: Oonagh Cousins’ story

You need to rest. You're clearly unwell, you need to stop. And I just remember feeling so much relief that someone had given me the permission to stop. And I stopped and then very quickly, I realised I was very unwell. What happens to someone who is that invested in that life when it all comes crashing down? How have you managed to walk away from that point until now? Welcome to Make Visible, the podcast Shining a Light on Complex Chronic Illness. I am your host Emily Cape Stevens. Welcome back to Make Visible. And this week I have Jez back with me. Hi. And today we are going to be talking to Una Cousins, who is a former professional athlete who was preselected for the British rowing team for the Olympics in 2020 before contracting long-covid and ME. Before we get into our conversation, I wanted to raise a point that was brought to my attention by one of our lovely listeners Louise. She wrote after last week's episode to point out that a supplement that we've been talking about, glycine, actually can cause insomnia in 5 to 15% of people and she has the same effect with magnesium glycinate. And so I just wanted to put that here at the top of the episode and say, as with all of these things, there will be a different reaction in different people. And I wanted to point it out here, but I also wanted to thank all of our listeners who have fed back on our previous episodes because it has been so nice just to hear people's opinions, hear what people are interested in, how some of what we've discussed has helped and how people would like us to talk going forwards. So there's been a great response to you and I sitting here having a conversation. How has the response been for you? Very positive actually, since the initial kickback on the EMDR1, since then especially the one with Professor Todd Tavinport. Incredible response to that in terms of people saying how validating it was. Because again, we're starting to see some pretty good evidence that it seems to explain something that it was previously inexplicable to so many medical professionals around the world. So when we start to get the science reflecting what we feel in our bodies, that feels. I mean, dare I say almost exciting and I think people have responded very positively to that. Great. When we're having these conversations, these ones that we're trying to do more story-based, more of a personal take on them. I'm excited to try and bring this idea of sharing our voices within the community. I do encourage all of our listeners to keep writing to us. Some people have emailed, some people have written it on the podcast apps. Because if we can make a difference to one person from someone's advice over here being shared on here or on the comments, I think it's huge. What we want to do with these episodes that are different people's stories is we are going to talk, Una, about your life and your experiences. But more than that, it's about us being able to have conversations and some of them might be difficult conversations that are not regularly being put out there about the impact that living with the chronic illness has on your mental health, on your social life, on your relationships. And that is where having this more personal interaction, I hope, will be helpful to people. And it's interesting, we might disagree on some things, but I'm quite excited about that, particularly in this current political climate, to be able to have diverse conversations and respectfully potentially disagree, but bring those questions, bring those conversations out here. So, Una, welcome. Thank you very much, I'm very excited to be here with you both. Before we get into your long-covid and ME journey, which has progressed to you being a huge advocate within this space, can you tell Jess and I what it was like to have your life before? How you got to being selected to represent Britain for the Olympics, tell us about that life. Sure, it feels like a lifetime ago, but I will do my best. So I started rowing at university, I started to sport quite late in life, but that's quite common with rowing. It's one of the few sports you can start later and get to quite a high level. And just, I kind of had a natural talent for it, I'm very tall, I was sporty as a kid and I took to it, I wouldn't have admitted this, but quite quickly it became my goal to compete internationally and be on the GB rowing team. And then after uni, when I was graduating, I was like, okay, I have to make a decision. Do I want to go and do normal stuff or do I pursue rowing? And I knew that I what I wanted to do was row. And so I moved to London and I trained at the University of London Boat Club, which is one of these boat clubs that is very focused on getting people into the GB rowing team. I'd done under 23s at the end of university and had really got a taste for what being a professional athlete was. We trained three times a day and everything was catered around being as fast as you could be. And so I went to University of London Boat Club, very focused on basically getting good enough to get into the team. My rowing career was a bit odd in the sense that I got scouted by the British rowing team. And I was supported to develop, got funding quite early and I had access to physios and stuff. And it made for quite a bizarre rowing career. And that's quite the reason what happened was quite so brutal. I was very much accelerated a bit beyond my technical ability. I was often put in boats that were better than I was. But you had the strength because I had the strength, right? But it was, it was very interesting psychologically because on the one hand I had this support from the system. But on the other hand, I often felt very out of my depth. And I was put into the GB rowing team, the senior team. And I felt so out of my depth. I hadn't raised that much. I didn't have this roster of results. And I was super conscious of that. But I was like the year on year, my technical ability was improving rapidly. And so GB rowing team is like, well, we'll get her in the team and we'll train her up. And in my defence, that's what happened. So once I got into the team, I got into February 2019 and then this Olympic season started in September 2019. So it works like a school year. And I remember the day before I was starting this season, I was like, what am I doing here? I've never been to a world championships. I haven't got any results from the World Cup, which is what happens in the non-alimpic years. But I'd spent my whole rowing career feeling really out of my depth. And so actually, I was very well prepared. The way I approached it was just being incredibly present. And I know how to get up and do a weight session. I know how to recover properly. I know how to eat properly. I know how to organise my life so that I can be the best I can be every day. And I just do each session, each stroke, each weight lift, each rowing circle. Or am I just taking it one, everything one step at a time? Yeah, absolutely once at the time. And this is very applicable for long-coated. Yeah, exactly. I think sport is incredibly good for preparing for chronic illness actually. So you do like the kind of testing and seat racing. I trained that muscle in me. Your brain is also a muscle. I trained that psychology so well that even though I was seat racing, which I see racing is when you run two four side by side and you switch people. So you run the race and then you switch to people and then you run it again so you can clearly see who's making the boat me faster. Incredibly intense experience. Probably one of those stressful things I've experienced. The Olympic selection was on the line, but I remember being so in the zone, I just have to go for me to be here. And it worked. I produced those results that I hadn't ever produced previously in that kind of environment. I got accumulated in this one great season. And how did that feel being pre selected for the Olympics? If you had made that your goal, how did that feel? I quite had to go into words, but I do remember quite viscerally. There was this one time we had done this testing in November. The selection hadn't been decided, but up until that point I'd been out of the boat right because there's a ranking and you know where you are and you know that I was knew that I was out of selection. And we had this week of testing and I did we did pairs testing. When you race in pairs, you do erg tests and then you do seat racing. And I won my seat race and I had a series of results that meant I'd put myself in the mix. And it wasn't decided yet because I was still more testing, but I just remember driving home on the M4. I'd be on say on loud. And I'd just like streams of tears because my whole world was like a gear shift and I'd gone from hoping that I might one day be good enough to be like, oh my God, I actually I am good enough because you have to convince yourself that you could be good enough. It's really hard to properly believe it. I've now put myself in with the athletes who are good enough to go to the Olympics. How did this happen? I was just driving home to make dinner incredibly normal, but my whole world had just lifted on its axis because it was such a big deal for me. And so you would say. at that point, rowing was your life. Yes, it was. I get very invested in things. I can be quite single-minded, and I just loved it. I really loved it. It was very important for me to do it for the right reasons. I loved being an athlete. I loved the day-to-day. I loved getting better at things, and it's such a privilege to do everything in your power to be really good at something. There are some major negatives to being an athlete, and I have since realised that more since stopping, but at the time, it's such a fun thing to do. It's such a fun thing to do. You're being paid to do sport, and probably to be really good at something. So what happens to someone who is that invested in that life when it all comes crashing down? Can I just put B question in there at the same time? Sure. Which is, I'm assuming that lots of your other rowing club colleagues all got COVID at the same time. Did any of them, too, go through a ropey period immediately afterwards, and was there a sense amongst the whole team of how to come back from this? And where did you fit into that? So, yes, COVID ripped through the training centre, and it was right at the time we were doing our final Olympic testing. So everyone was still training with it, because most of the time, when you're not, that you stop when you get sick, but it was our final Olympic testing. So that's the one time you don't stop. It was a real mix. Some people did get better very quickly in the two weeks period. Other people, a very good friend of mine. She got long COVID, not as badly as I did. She had it for a few months. First, it was realising it was COVID, because none of us were that sick at the beginning. I mean, our initial experience was very early. It was very early. We didn't know what it was. You could test either at that point. No, no, no. I think there was maybe five of us out of a team of 70 that got some form of long COVID, and I got it by far the worst. Most people got better after a month, and big reason, I think, I got it the worst is that I was new to the team, and the training load, I was totally in the bin. I was over trained, basically. So my body was just so run down, which I think is quite a common tale of people on COVID. Yeah, just about that. You've been pushing so hard in various aspects of your life. Yes, exactly. It's almost like it leaves the hole for. So I was super susceptible. I couldn't have really got a virus at the worst time, to be honest. I was totally exhausted. But how long did it take you to realise that you weren't coming back from that virus that other people were coming back from? Yes, I imagine quite similar to you guys. I really went through that in the one more week, I need another week, and I think I'm getting better. I tried to exercise, still feel really sick, rest some more. Also, it's that blur of the first lockdowns where you don't have a routine, you don't have a schedule, you're like, "I'm I depressed? Can't see a doctor in real life?" Speaking to doctors on the phone. And I also think actually looking back, I do think my illness took a few months to really bed in in the sense that there were sometimes when I was able to do more in those first few months when I didn't get PM immediately. So that really confused things. I can do a 60-minute bike gently on this day, but I feel horrific for doing it a week later. So that first few months was just a total blur. I also think it had such bad brain fog and cognitive issues that I just couldn't really figure out what was going on. Do you know what I mean? Is that your experience, too? That because we didn't really know at the time. Obviously, if you were someone who knew about ME, that's one thing, but most of us didn't really understand post-phile consequences. A little bit like you, now. I was peak physical fitness. Yeah. I was in the final month of training for the London marathon. I was going for time. I hadn't gone for a bit before. So I was aiming for 249. I was super fit. A little bit like you driving home. One of my last memories before catching COVID, I was on my way back from LA. I'd been out there marathon training for a month. I was driving back. The sun was setting. The palm trees are all there. The weekends and blinding lights had just come out that song. And I just thought I had my window down and I was just really happy. Five days later, my life would change. And I didn't know that. But I was still in this mindset of, I have to stay fit. I have to stay fit. So I went back to running probably 10 days after first symptom. And again, sometimes it'd be okay. And then over the first three or four weeks, I was trying to keep my heart rate down, but even keep my heart rate down because I knew I shouldn't push too hard. I was getting faster and faster. And I was like, yes, okay, I'm getting over this. And then suddenly, bang. It just after about a month, it really just hit me like a train. And that was when I went, I've maybe got to stop running now. And I will look back. And maybe you think the same thing. How different would your course of illness have been if you just stopped straight away? Yeah, I didn't push it. I tried bits of it. So I always did it very gently. I don't think I really push trying to get back into training. I didn't do that much training in those three months, but I didn't know how I was either. It was just a total blur. And then what happened was lockdown ended. And we were returning to the natural training center. Everyone's coming back in person. And I tried to string a few sessions together. I tried to do three sessions over three days or something. Very gentle sessions, heart rate low, etc. And I crashed really badly. I had a GB rowing doctor called me in and I didn't know at the time, but the doctor had caught a nun that I was long-term sick. And I had a post viral thing. And yeah, she was like Tokyo's not on the course. So interesting. So someone from the outside identified that without you going and approaching and butting your head against 16,000 doors with 10 people telling you know you're fine. Yes, someone because of the arena in which you were working and people monitoring your physical fitness. Yes, you were pulled. Oh, 100%. This is one of the things that really helps an athlete. There's no middle ground. You can't exercise when you're sick, right? You can try, but very quickly, it's obvious that it's not working. And I had black and white data, I sit on the eye and my schools were horrific. I was clearly sick. And didn't need to know exactly what it was, but she knew I was unwell, she knew I shouldn't be training. That was very obvious. You've spoken before. Are you and I have said any had a conversation, but you've talked about it in the media before. The way in which athletes are taught to rest, there's a very different approach as an athlete to a normal human being. Yes, so this is one of the many ways I think being at it helps you chronic illness is that in high-performance environments, rest is valued. So when you train, exercise is only one half of the picture, right? Exercise puts stress on your body and it's in the recovery that you get stronger. And so our coaches used to tell us to recover hard. That meant being disciplined about not going out and socialising, not going for a long walk with the dog. You should be on the sofa, you should be refueling and you should be even kind of cognitive stimulation. You shouldn't really be working. They understood all of that comes from the same energy pool and that was valued. That was respected. That was being seen as disciplined and focused and professional. And so that was a totally part of my life was really valuing rest. And then also when you got sick, you rest it because if you exercise through sickness, you just extended the illness and you spent more time out of training. So within reason, like this not perfect system. When you're doing that much training, we were training 16 times a week. If you are a bit run down with illness, if you start to train, you just put your body in a hole. So first time to be honest, you stop. I know I tried to train when I was still sick, but that is the general psych. That's the mindset, really valuing rest. But one of the things that at the time you are being paid sponsored to train, you're being paid by the British right. So then when you have to stop, were you still being paid? Were you still able? Which is a huge thing because they value your health in that way. They're investing in you getting well, which for someone like me as a freelancer. Zero support. And as a freelancer who was earning over a certain threshold, zero support from the government subsequently. I was, you get put into the medical stream and they'll pay you for like a year or two. I can't remember the exact length of time, but I had private health insurance and they didn't know what was wrong with me, but I was given the space to do what I needed to do. And also, and I actually struggled with this now more because this isn't this is not the goal, but I knew I wanted to get back to 100% recovery because I was only where I was going to be able to go back to rowing. So once that decision around Tokyo was made and I realised that was not on the cards, I aggressively rested. I don't think I triggered PM more than five times in a year. She knew eight, nine months ahead and knew that I was properly sick, which I think was very good insight. I don't fully understand how she worked it out actually because I didn't have clarity of mind of actually how sick I was. It was only once that decision was made and I was like, oh, I actually only have like four hours in the day where I can do like basic stuff without triggering PM. I was still really sick at that point and she had figured that out. But this is fascinating in itself that you are having your whole body monitored by professionals and yet, I guess you were also still pushing yourself and yet you got to such an extreme level of sickness that actually reached that threshold to be diagnosed with ME. I was never diagnosed with ME, that's why you fulfilled the criteria. I had post-social malaise and yet the other diagnostic criteria for us a day that you were able to feel exactly. PM was my dominant symptom. I had a bit of Mcast and a bit of Disautonomia, but I didn't have them badly. It was post-Sertionalist, was the main thing. Disautonomia, you were encouraged by doctors when you were a little better. That's a whole other phase. Yeah. Is that about a year later? So the timeline is September 20, October 2020, whatever it was, the decision around Tokyo was made. I aggressively rested for a year. My energy envelope, as they call it, slowly but surely improved. And I was seeing doctors, they were scanning my heart, my lungs. There's nothing on my heart, and lungs, it's great, I'm having these scans, but they were so clear to me, they did not have any idea what was wrong with me. And so I stopped going to doctors because they just clearly didn't know what was wrong with me. But resting was working. September 2021. Wow. I turned a corner, second dose of the rise of vaccine. I'm very close to feeling quite close to myself, but I can still feel the risk of PM is there. I say, second dose of the vaccine in my body turns a corner. And PM, positive corner. Positive corner. Just feel it intuitively. PM is not a risk anymore. And so I start training again, and I start very slow return to training. Three days a week, just biking, slowly but surely building up each week, a little bit more, a little bit more. And what became obvious, I still had a bit of a sort of name, yeah. And it was mild pots, but the main issue that it was causing was I would get these sympathetic flares when I'd reached a threshold of activity in a week. So I used to rest on a Sunday, and if I push that week a bit too hard, I would get a sympathetic flare. And that would be gut symptoms, hot flushes, feeling very fight and flighty. I went to the doctors and they were like, "Yep, you have dysautonomia. It will go away with exercise." Yeah, because that's the. That's the trident's trust in method of ice. Right? And what happened was, as I got fitter, my threshold for those sympathetic flares did increase. I was able to do four sessions a week, five sessions a week. And so the doctors seemed to be right. It was so different from PEM, which was so clearly not a fitness thing. Whereas with my dysautonomia, it was quite clear that my capacity increased when my dysautonomia flare was increasing. Does that make sense? Hopefully I've conveyed that. And so I thought, okay, the doctors are right, like I can train out of this. Yeah, I go back to my old club, I race it like Henry Moore-Rugato, which is quite a famous race, because the proper record, I was doing 12, 13 sessions a week. How close were you to your old levels at that point? I would say about 75%. Like I was still a decent way off. I pulled a 648, and my PB was 637. You're not holding the boats up? That's a decent score. That's a score that the GB-Rang team would be interested in. The thing that had lost was this baseline resilience. You can go fast on over seven minutes, but being able to tolerate a big training load. I'd lost that, and I still had quite a way to go, but I was getting that. I was making really quick progress, because your body remembers. Summer 2022, my funding is up for Renewal, and I'm really conscious of Paris 2024. I've been out of the rowing team for two and a half years at this point. My resilience is running low. And I've been so focused on doing everything right. Also, the other big thing that was getting in the way was, I was on to Talapran, not for depression, and it's anti-depressant, SSRI. In sport medicine, people who get overtraining, one thing they have found the works to help people recover, overtraining is when you've trained too hard for too long a time, and you get into a big hole. So, a million miles from post-operative fatigue, but it is different. They give people some talapram, and it can help speed up recovery. This is something that we did in the team. And so, I was given that, and I don't think it helped me that much, but I also think people thought that maybe my mental health could do with it as well, so I stayed on it. And then I wanted to come off it, and I was very slowly tapering. Looking back, I can't really believe it happened, but I still had dysautonomia. I was coming off the talapram, and I was rejoining the GB rowing team. And my funding was up for Niels and the press is on. Basically, my sympathetic system was just an absolute massive flare, just never came out of it. And I was just getting really, really unwell, and the doctors were trying to treat it with medication. I was seeing doctors, and they were giving me a parodistic mean, which is for your gut and anti-histamines. And so, the support system I'd built in the GB rowing team, I was working with a physiologist, who I really trusted. He wasn't telling me to stop. And I looked back at that time, and I knew I was in a bad way, but I was in total denial. I couldn't accept that after two and a half years of trying to get back. I knew if I had to stop, it was all over. My new rowing was done. And I couldn't accept that I was still sick. I wanted to believe the doctors. I wanted to believe the people around me that I could keep going. And I was so focused on getting faster, because I was rejoining the GB rowing team, and all that I was rejoining all the team members. I was like, "Oh my god, I'm slow again." And that was when my focus on it wasn't on, I was actually still sick. And I went into shock, went into lung mode, and what actually ended up happening was I went back to my old coach, who this is a good example of where sport is good, is that he didn't need a doctor's report, he didn't need an expert to tell him what was wrong with me. He was like, "You need to rest." Just listen to as I described how I was feeling, and he was like, "You're clearly unwell, you need to stop." And I just remember feeling so much relief that someone had given me the permission to stop. And I stopped, and then very quickly, he had really nice, I was very unwell and retired. Just what I'm unpacked, the emotional side of it. Yeah. Tell me about Virginia Emotions went on through that period, and through the point at which you were still hanging on to the tiniest thread of this thing that used to be me, this identity that defined me, this thing that I pursued at the expense of all else, and you're still hanging onto it, and then getting to the point where actually you have to. Looking back, it is a bit of a blur, but I think I was in denial. I was in denial, I was in denial. And I think one of the things with chronic illness is that nobody around you really knows what's going on. So you have to advocate for yourself, and could incredibly strongly. That's one of the big challenges with chronic illnesses that you have to have so much self-conviction that you know what to do and that you're going to make the right decisions, because the doctors don't. We know the same old story. Of course, you don't want it to be true. So you have a habit of overriding that. Yes, exactly. And I think it would have been incredibly easy for me to have gone back earlier, not to have looked after myself as well as I did. But I just was so exhausted at coping, and making all of those decisions by myself, that I honestly think I had a decision for TEEK, and I also do think that the Sitalapram had a big impact as well in the sense that your strength of will to change course is mental, but it's also physical. And I didn't have any strength of will left. I think the Sitalapram coming off that drained that of me and also being incredibly on well again. The path of least resistance was to keep going. Everyone around me was encouraging me to keep going. So the path of least resistance was actually just to keep doing that. I remember just feeling like I didn't have the strength to go to my coaches and say, "I can't keep going. I didn't want to disappoint them." And I also didn't want to process that my rowing career was over. After all of this time, I'd spent climbing a mountain and you can see the peak. It cannot be over. I just couldn't process that. But then actually by the time I spoke to my old coach, I was so relieved because I was really unwell by that point. And so I just wanted, I actually wanted to stop. And I very quickly realised that I was super unwell and I couldn't go back. And so actually the decision around retiring was really quite easy when I got to it. But you needed permission. I needed permission. I feel like there's something in here, which all of us have had as long haulers, which is the five stages of grief. Yeah. Of denial, bargaining, anger. We're acceptance at the end. But definitely got denial anger. Yes, but there we go. But it feels like your journey through that was to some degree shaped by this recovery and having this goal and having this framework of doctors around you, who some of them were giving you good advice, some of them maybe not. Yes. Maybe people who haven't been within that structure of sporting excellence have found our own way through that. I can't explain my emotional journey without explaining what different things were happening at that time because it was very much dictated. And that's true for lots of other people too. But it was so related to the sporting journey. Yeah. And where I was in the system. Is there's that sort of that five stages of grief. Surely it starts all over again at the point to which you realise that that goal that you've had for so long is now something you have to walk away from. And this is again something that all of us have had in one COVID, which is our old life and our new life. And there are certain things in our old life, which are gone and they're probably not coming back. And we have to grieve those and work out who we are now. So what was that process like for you when you have a goal that is so close and so bright and shiny? Yeah. Good question. I think there's two main things. Support system and doing a lot of work around emotionally processing stuff. So the first one, this thing around identity and it's very linked to my support system, I think. Like I had, I'm really lucky I have my family a great. And they are really good at walking this line between their very supportive and they would be incredibly proud if I'd gone to the Olympics. My dream's always their dream. But they're also like the first to crack a joke and my expense and they're very grounded and never like anyone get too big for the fact. Right. And so sure not going to the Olympics is really tough, but I'm still an owner. That's the thing because it's not my identity. Because they don't. Yes. Puts. that badge of the Olympics and that athletic prowess as your identity because they just know you as Una. - And everything just keeps going as normal and you keep putting one foot in front of the other and as it should be and they're right. I'm doing something else now and I'm really happy. They knew that I'd be able to do that and like having that foundation of support, I think, means that I don't think I ever actually fully identified with being a roeer. I got my value from somewhere else, basically. I loved it and I think it was only part of my identity but like the deep down the core stuff isn't, wasn't rowing all the Olympics. - Do you miss it? - Rowing. Yes, I definitely do miss it. But there was good and bad bits and there's good and bad bits of my life now. I don't see it as like, oh, I'm glad I'm not doing that anymore or I really wish I was doing that. Life keeps going and you make the best of what you have in front of you and when you're rowing, it's very all-consuming and the sacrifices as they call it, the things that you give up are seen as totally justified. - All worth it. You win that Olympic gold medal, it's definitely worth it. But you're not a good friend, you miss it on birthdays, you miss it on weddings, you don't spend time with your family and that's the kind of thing. - That sounds like I'm on credit. (laughing) - I've actually heard you talking before about the difference there because it's all means with the rowing, you could justify it. It's like, guys, I'm training for the Olympics. I can't see you, I can't stand it. - People understand it. - And people understand it. - Yes, when people are like, why can't you come on? Come on, come on. - Yeah, yeah, yeah. - You struggled with that much more in terms of people wanting to see you or you wanting to fulfill social obligations and having the illness as a reason not to, rather than having the rowing. - Yeah, it's much harder. I do think that stuff is really important. That's one of the hardest things, but chronic illnesses, you lose that stuff. I think not rowing and having that stuff, I'd really value that stuff. And also, there's other bits of my personality that I had to kind of shut off when I was rowing. - I love comms, I love politics. And I had to put a lid on all of that stuff of your interests outside. - Yeah, exactly. And so, I'm so grateful for rowing and I loved it, but also really liked my life now, which I'm really grateful for. So, I don't know whether I want to finish that question about how did I process it. - Yeah, that was just good to say. Take a couple of steps back. What were the tools or strategies that you employed to try and process the grief or get to an understanding of what you'd been through? - You guys have talked about this on the podcast. I don't think we talk enough about how important is to process your emotions. It doesn't happen automatically. And we are emotional beings and what I've really found is that we're actually way more resilient than we think we are. And actually, if we can turn towards our emotions, it's an ongoing process, but it depends, you know, different people will do it differently, but that kind of metaphor of emotions are like balloons underwater. If you push them down, they put back up and it's really hard work. - Very much. We put under the rug, like what's under the rug? - Very British. And so what I found, I remember quite vividly when the decision around Tokyo was made, I remember thinking, how am I going to cope with this intensity of this emotion? I was having panic attacks and I broke down in the supermarket. This is the most middle class story ever. I-- - Was it weight-trace? - Real weight-trace. - Darling before crying in weight-trace. Just to convey like how close the emotions were to the surface. The intensity of the emotion was really intense, right? How am I going to cope with all of this emotion? And I'm sure you guys can understand that. I wear, I feel my emotions are very strongly. They're very close to the surface. Like I'm the same. I feel like maybe Jez is noticed. - No. - You're like-- - I'm going to tell a little story, but I want you to finish first. - Yeah, so I really had no choice, but I was like, I'm going to have to do something about these emotions. So my process is turning towards them and being curious about them and trying to approach them with curiosity and compassion. And what I have found is that often, it's this kind of weird thing, like the emotions overwhelming, but you actually haven't fully understood it. So if you turn towards it, so like brief was a big one for me. And why am I feeling grief? Because I've lost rowing, which I really loved. Like that group represents love. And that makes sense. I understand that. And that's by understanding what I was experiencing and realizing it was because I was fortunate to have experienced rowing. It doesn't make the emotion go away, but it gives you a new perspective on it over time. And then also just being compassionate and you're like, I'm having a really bad day today. The emotion's very strong. I need to be really kind to myself. My sister's really good about this. She's like, you need to be kind. She's like, firm with me. Do you know who tells me? You've been through a lot. And having that discipline and like really making space for, chronic illness is so hard, just really giving yourself space to be kind to yourself and give yourself-- To give yourself a mission, to be kind to yourself. Yeah. --the way you're kind to other people. I found that what at first thought was going to be unmanageable, that actually you can carry these emotions around. And they do get smaller over time. And by processing them and understanding them, you start to-- instead of them directing you and leading you, if you don't process the emotions, the emotions will dictate how you make decisions going forward. And if you process your emotions, you can come to life more with yourself rather than just with your negative emotions. But the negative and positive, I think, is something big in that because it's trying to always put them into old grief is very negative. No, it's not. Look at it as something that's so beautiful because it comes from love. So if we stop completely splitting these between positive things and negative things and sort of sit with them-- Yes, sit in that discomfort. Sit in the discomfort. Yeah. I totally agree. I definitely had this. We've seen negative emotions come like some way, like a failure. Yeah. No, it's part of life. Even the anger. Yes, even the anger. Anger, if one comes from a-- Well, even calling them negative emotions is part of the problem. Yes, that's-- yeah. Yes, exactly. I totally agree. And I'm feeling this emotion because I think if you go for stuff, you risk losing it. And would you have preferred to not have gone for it? No. And life has its ups and downs. There's a ton that's out of your control, but that doesn't mean you shouldn't have gone for the rowing. And so I think I'm fortunate. I think I'm quite accepting. I don't really know where that comes from. Maybe it is from my family. The rowing hasn't worked out. I'm really glad I've experienced it. I'm reading a lot of grief. I'm going to carry this grief. But I'm also going to move forward with my life and make decisions that I've built something that I like again. And so that emotion over time-- it's not a finished process. I still have to do that. There's still days when it's hard. And I still think I haven't totally processed the loss of rowing. And I still find it hard to go to boat clubs and stuff. That's a tell. I'm still finding that hard. So this is far from perfect process or far from finished. Over time, it works. It's worked for me. And it's getting marginally easier. Yes, it gets marginally easier over time. So just on the emotions and griefs. First of all, I want to say how happy it makes me to hear that you've come out of that space of illness to be a place where you do feel like you can grasp life again with both hands. Maybe it's not the same stuff you were trying to grasp before, but the fact that you can still throw yourself into life is incredible. Thank you. My story is just about coming here. So we're recording this in Shoreditch. I left Wilson Green, took about 50 minutes in the back of Anuba. And as I sat there in the back of Anuba, I was going to parts of town, Holloway Road, High Green Islington, Old Street, that I haven't been through in years since my old life. And I was looking at places and going, I had a mad night out there. I went out on a date there. That was fun. Or, ah, this is where I used to stop for fuel and to get drinks before we went to football. On the way to Leblancide Sunday morning football. And I realized I was about to start crying in the back of the cab. And I was like, oh, God. Like, just being back to all of these places, I feel like Patrick Swayze and Ghost, right? I feel like-- We couldn't have an episode with us and movie references. It's always going to be there somewhere. But honestly, it's like the old me died, but I'm still here. Yeah. I'm still looking at all of these places from my old life. And no one else can see me. No one else can see that the old me has died. And I'm just riding past silently in the cab with my ear plugs in because I want to try and keep the stimulation down. And what that told me is that I'm still grieving that. I'm still grieving that old life. Because as much as there are some things that I can do now, all of those things I can't do. I can't have a mad night out. I can't go and play Sunday League football. I can't go out socializing any evening. I'm a really good friend of mine. Had his birthday the other night. But because I went to go and see my dad during the day, there was no chance I'm going across to see him that evening. It's this, how do you reframe your life and manage all of those feelings around it and still try and be grateful that you had what you did have without feeling so sad about the loss of them that it's overwhelming. And sometimes it is overwhelming. And when it is overwhelming, I try to let those tears come because like you say, don't shove it under the rug. Let that stuff out. And eventually over time, that grief does get more manageable. But I'm clearly still in the process of it. That's one of the things that's so hard about chronic illness is that you the grief keeps going. You lose things every day. It's not like there was an event that happened and then you grieve it. The grief accumulates, doesn't it? I think that's different from most griefs is that every day you have to face what you don't have. I'm fortunate that I'm a lot more well. And so I don't face that as much as you do. Yeah. Health is such that you still are dealing with loss every day in a much more intense way than I am. Yeah. And I think for me, as I have incrementally been able to do some of those things more, I will never have those kind of nights out that I used to have. But I have managed to reform. certain things in my life in a different shape, but there are certain things that I absolutely loved in my former life that I didn't know how I'd live without them, but it's just been a process of how you reform them in. Can I have to reinvent yourself at some level? And there's a huge amounts of emotional and mental and psychological dexterity required in that, because there's trap doors all over the place, emotional trap doors to fall into as you try and navigate that space. I think it's really hard. Yeah, it is a complete reinvention. In terms of you and your career, you've completely had to pivot. I've completely changed what I do. There is no way that I could do what I used to do. I don't think even now. But yeah, there's something to be said for finding those new, exciting, shiny objects and the different ways in which. And now, I think I have a lot more, a different form of cognitive exertion in my life that I find actually more fulfilling in some ways. And I think that sounds similar to you, because you can't use the same tools that you used in your former life, but now I think the thing that's really hard about chronic illness, I'm well enough that I can do that right. But if you're so unwell that those things are not available to you, then it's a whole different circumstance. I'm astonished to the way that people find within the class that they have the joy that they do. You know, I'm really grateful and I'm fortunate that I've made a recovery that means I work full time. I can simply see my friends and family. So I was able to find joy in different things. If I wasn't able to do that, I think I would be sitting here in a very different place right now. It's very easy for me to be not easy as I'm slightly doing myself a bit of a disservice, but it's much easier to emotionally process stuff when you can find joy in other things. So I think I think I think a lot of it pulls down to purpose, right? How to what degree is it possible for you to find purpose within the constraints you now find yourself? Yes. And depending on how severe your illness is, it's going to be increasingly difficult to try and get hold of the purpose that you can get your head around because we only have an hour of function a day and that spends on the activities of basic living. And that's all you've got. And I think that between the three of us, actually we've each chosen to make our renewed purpose part of the thing that brought us down, if you will, as in you've become a huge advocate for both the long COVID and the ME/CFS community. You've written papers, you now work for visible and you're trying to make a difference and jazz you the same, you've made your purpose trying to help people to understand what an earth is going on with them. Whilst you and I particularly are not as sick anymore as other people, I like that we can take our experience and actually try to. Give back a little bit. Yeah, because actually all three of us got sick at the six years. I go. And you had support from the medical professionals around you, but I don't think that any of the three of us had support from people who actually understood what we were going through and so that's almost what we've made our mission to, is that, I mean, is that what was your launching of your YouTube channel? Where did that stem from? I was searching for control and because this is a condition that strips all control away from you, and knowledge, and knowledge, nowhere knows anything, and I found myself in the position where I could find some answers to some questions by virtue of the long COVID support groups and the way I was able to put surveys out and turn them around really fast. I could get an end of 2000, turn it around within a week bank. There you go, there's some science for you. Have some information. Admittedly, it's not going to get published in my Lancet, but it was still giving us answers that were replicated 18 months later by proper peer-reviewed papers, right? I found that out 18 months sooner. For me, I was just trying to wrestle this beast out. At that point in time, I saw it as a bit of a battle between me and this beast of illness and I wanted to win, and this was my way of fighting back at the time. I mean, arguably, I should have just been resting. How did you come to actually start working with long COVID support? How did you decide to make your mission something that is entrenched in the experience that you got through? Yeah, interesting. I mean, started off with the media interviews from the start of the first one I think was October 2020. Something I haven't sort of spoken about is my friend had ME before this. When I got sick, I wasn't surprised that there was no health care or no help out there, which I think really shaped my experience too, because I think it's very traumatic when you're not getting better and you're not getting any health care and you don't expect it to be like that. So, I was doing these interviews and I was realizing, "God, nobody knows that there's no health care for these conditions." And I realized also, "Oh my goodness, there's all this stigma around these conditions and the fact that I'm an athlete is going against this narrative." And I hadn't realized that that was a thing. This just shows the kind of bubble I was in. People long COVID were just like blazy or whatever. Blazy, depressed, anxious. Yes, exactly. And then we'd get better quickly. And so I felt responsibility, I think. I have got to get my story out there, and I got a lot of messages back in those early year, two years of the pandemic. I just thank you so much for making me not feel like I'm going crazy, basically. And I wasn't doing much at home, so I felt like at least I could do. I was just doing these interviews. And then I got interested in comms. I can convey information. I didn't realize that that was something I could do, and I enjoy doing this. And then also, I think I got, like, learned about the history and everything. And I was like, got progressively more pissed off. Nice guidelines, great, like, size therapy. Yeah. It was so, the injustice of it. The injustice of it. Yeah. So jarring against my experience of being an athlete and rest being valued. I couldn't believe that doctors hadn't figured out that rest is good. Like what? Doctors or society, like, they are in a living a society that is so, it's so antirest. The rest is on being busy and every one of them and achieving things. I could see that with my background was a good messenger for that. And yeah, so then it's like the same thing with rowing. I get invested. I get curious about how do we make progress. And I just kind of shifted from rowing into this space, basically, and comms are like advocacy. And I just just was trying to learn more and trying to be in places where I could learn more about how do we make change? And I like learning stuff. Learning stuff. And then disseminating it. I realized I like comms and I like doing that. And I think we need better comms in this space. And so, yeah, rest of history really. Since you've been working with various charities, you've been working a lot with different healthcare professionals, experts. Do you feel like we've had any shift? I mean, I'd be interested to see what you guys think on this. But I do think progress has been made. It's just happening far too slowly for the people who are sick now. There is the MSEFS delivery promise massive disappointment, but that is still a step forward. The government has talked about severe ME, right? Very severe ME. There are researchers who are doing work. We are very, very slowly making progress. And I think Long COVID did give these conditions a credibility that they didn't have before. But there's still, it's so entrenched. The whole generation of doctors have been taught about greater exercise. There are people undoing that is just such a hard problem to solve. And the rate of the research is just too slow for us to get the treatments that people need tomorrow, right? Do you feel like we've broken out of our bubble at all in terms of actually reaching the wider society? Not really. Because we're so insider. I had a thought on this. So I was at the end of last year. I went across to Brussels and spoke at a forum that was happening in the EU Parliament about COVID. And this was the first to my knowledge, first conversation on the subject at the EU Parliament about it. And the figures that are generally accepted now for Long COVID are effectively in 3% and 6% of people who've had COVID. And most people have had COVID. So that's kind of 3% of most people. And what kind of staggered me was this is huge. 3% to 6% of the people in a country is a really huge number. What would that number have to be for it to be taken seriously? 3% to 6% is huge. This is still a huge number. And the impact on healthcare systems and the actual GDP of… Well, 65 billion euros in salary lost in Germany alone. So there's just a random number just pulled out of it. And that doesn't include the healthcare class. It doesn't include the support cost to social welfare costs. You'd think if the country's losing 65 billion euros of GDP, they'd throw maybe 1 billion at it. Maybe it's been wild, it's throw two. But that doesn't seem to be happening because it's not politically expedient to do so. Because by the time you do that money and it got any answers, you're going to be well at power. But I think there's also something to be said for the fact that we're still a lot of people are invisible to a degree because you can't get help because it's not really something that's going through the healthcare systems still and all the social care systems. People are being looked after by their loved ones. You know, a huge thanks to everyone who is a care of people with these conditions because it's a huge burden for people to bear. So they're not reliant on the necessarily government's poor yet that down the line we might start seeing. I totally agree. And I think other thing that I've thought quite a lot. about is comparison to HIV and AIDS. And the order of magnitude was an order of magnitude less, right, in terms of numbers. It was so much fewer. But the thing that we need to consider is like organizational capacity, which is the gay community because of their history had really effective organizations. They had big organizations which had systems, they had funding, they could mobilize people that actually made HIV/AIDS in America. It made an election issue, even though far fewer people were affected than in the whole COVID. Long COVID is a new illness, and everyone is dispersed throughout the country. They don't know each other. We can't mobilize. And to mobilize people takes just resources time, which people with long COVID don't have. That's interesting, isn't it? That sense that it was with HIV and AIDS, it was a community. Look at the community. Where is this so scattered? So scattered. So many people, it's so scattered. It's still 20 plus years there didn't it to develop effective treatments. Yes, but that organizational capacity that gives you power, which the long COVID community does not have that power, we are really easy to ignore. And there's all these competing issues. Look at the news at the moment right now, right? The thing with making political progress is you have to put pressure on politicians. And they're not under pressure. They're under pressure from other things. We've got huge work to try and develop. You've done a lot of work into actually what do we need to develop in terms of social sciences to actually help people to support people? And as a society, we need to keep pushing to actually give people support, to help people, to believe people, to listen to people, and to understand people, because we are still in a situation where the majority of doctors don't have any answers. Don't have anything to offer for people with these conditions. I totally think part of the reason these illnesses, like ME and stuff, hasn't been more progressive in many is because the people who need most motivated do something and have at least able to. And the people who care don't have money and the people who don't care do have money. Yeah, I'm 100% the structural obstacle. But also you talk about that sense of community. It is a community that people want to support. Want to come together and support each other. And that's not to say that our loved ones don't want to come together and support us. But actually, and if it's immediately facing you, you're doing so much work anyway just to care for that person that you don't have the capacity to go outside and be political. Yeah. Amazing. Thank you so much. Thank you for sharing your story. Yes, thank you very much for joining us. We look forward to talking to you all next time. Thank you for listening to Make Visible. Please do like, follow or subscribe to listen to our next episode where we'll be uncovering more insights into complex chronic illness. This was brought to you by the team at Visible, a group of scientists and engineers whose lives have been affected by energy limiting health conditions. We're building wearable technology that's helping 100,000 people measure and manage their complex chronic illness. To find out more about what we're working on and how visible could help you, visit our website at MakeVisible.com.