#21 Living life with energy-limiting conditions - Personal wins & perspective, with Gez Medinger & Emily Kate Stephens
40m 5s
In this episode of *Make Visible*, hosts Emily Kate Stevens and Jess Medinga share their personal journeys with long COVID, five and a half years after both contracted the virus on March 13, 2020. They acknowledge that no definitive answers exist for the condition, but they aim to offer hope and practical ideas based on their extensive research and interviews with hundreds of experts. Jess describes his current state as highly variable, comparing it to the fluctuating tide of the sea; he still experiences severe limitations, such as being unable to work full-time or engage in physical activities like running. Emily notes significant improvement, particularly in cognitive function, but emphasizes the need for constant nervous system management. They discuss a range of strategies they have tried: Jess found a guided psilocybin experience transformative for emotional healing, while extended fasting improved his dysautonomia but not energy levels. Emily advocates for gentler approaches like breathwork and mindfulness, warning against extreme techniques that may spike cortisol. Both agree that long COVID requires individualized treatment and that recovery is not linear. They highlight the importance of self-compassion and using the illness as an opportunity to reassess life priorities, moving away from achievement-driven habits toward peace and meaningful connections. The conversation underscores that while medical and holistic interventions can help, the journey is deeply personal and often involves learning to simply "be" rather than constantly strive.
(upbeat music) Welcome to Make Visible, the podcast Shining a Light on Complex Chronic Illness. I am your host, Emily Kate Stevens. (upbeat music) In a slight change to our usual format, today on the podcast, I am joined by Jess Medinga. And, what we're going to do is talk to you as two people who have had complex chronic illness for over five years about what has made a difference in this journey to us, to our health, to our mental wellbeing. Now, Jess and I actually both caught COVID on the 13th of March, 2020. And whilst we are not going to go thoroughly into our backstories because it is very much out there for you to see in other places if you want to find out more about our journey to this point. Jess has tried, I would say, in excess of 35, 40 different treatment strategies. He has written the Long COVID Hamburg. He has a very active YouTube channel. And like me, he has interviewed the top experts within the space of complex chronic illness. I don't know, Jess, I would say between us, we've probably interviewed 300, 400s of the top doctors in the space scientists, researchers, putting our minds together. We must have some knowledge there. You'd hope so. But the brilliant thing is no one knows anything. So there's a famous expression about Hollywood written by William Goldman, I think, one of the famous screenwriters of 70s and he just says, "No one knows anything." And that's about the executives and all the powers that being Hollywood who say they know everything. And the same weirdly applies to this in a funny way. I mean, not literally, but kind of. We don't have the answers yet. We've just got lots of pieces of the puzzle still. Do not have the answers, certainly. And there are definitely things along the way that both you and I have latched onto and found some really exciting research out there. But what I'd love to do today is try and we're not medical doctors. So we can't give advice, but I would like to give people some hope and some ideas of practical things that we have tried to use ourselves to get into the position that we currently are now. So without going the whole way back on your backstory, tell me today five and a half years into Longhavards, how is your life currently? How do you currently feel day to day? And where would you say you are in this illness? Such a tough question, isn't it? It's a metaphor I've been using recently is like how high is the sea at some random point in the channel right now? And you'd go, well, there's a tide that's pulling it left and right, you've got waves that are coming in from different directions and how do you measure it exactly? Do you know what I mean? Because it is even just minute to minute, hour to hour day to day, it's variable. There are still times when I feel bloody horrible and there are times when I feel okay. And there are days when I'm able to do gratuitously wanton, unlong COVID-like things. I will then suffer for it the next day or two, but I am able to do some of those things sometimes. And that is still something that I treasure at the same time in all of that. And whilst I have got to a place of being better than I was, there is still a little bit of a feeling of being in limbo in life generally and sort of trying to get the wheels turning on a direction and a purpose for the future, but feeling like the condition itself just sort of suspends you in this place where you can't quite get the wheels on that train turning. You're trying to throw coal in the engine, but it's just blottering and you know, we're not going to the Chuchu part quite yet. Very much still in it. Very much so, yeah. Still living it day to day. Yeah, I can't go back to my old job yet. So I, it could perhaps do a gentle days desk work, but that would probably punish me still a bit. And certainly when it comes to client freelance work, that's hard because you're on it all day, every minute all day. And that's, yeah, and that's not a sensible thing for me to be trying to do still. So yes, by that, by that measure, I'm still very much in it. Yeah. All of the questions that I'm going to ask you and feel free for you to field questions as well. I would love it if you tell me where you are and then I'm going to give my perspective of that, of where I am now. So that people have this dual perspective of two people that have really, really tried to understand the science and where we have got to. So I, in terms of my everyday, am so much more functional than I was, but it took me until four and three, 40 years to even feel vaguely normal. And I, at the beginning of this year, got my brain back. And I think for people who don't have that complex chronic illness, you have no understanding. I did not really understand how much I was not myself until this switch when it came back, that you are constantly struggling up hill to do things that were so simple before. And that's aside from the very physiological things and the pain, but this complete lack of being yourself was something that changed for me at the beginning of this year and it has completely changed my life. Now, that is not to say that this has gone. And I have to, and I think that I might have to, for the rest of my life, live every day, balancing my nervous system, being conscious of the activities that I do. And like you said, enjoying life, but possibly taking a hit for it. But I feel like I've reached some kind of new normal that enables me to actually live life. And I'm forging in a direction now that is different to what I was doing before. But actually is giving me joy and gives me a sense of purpose and possibly is more in alignment with what I'm supposed to be doing. And maybe that's one of the reasons that, you know, this all comes in in the first place. That's sort of overdoing it, the burnouts. And both you and I had quite high pressured, high octane existencees previously. I just want to refer to what you were saying about where you're at right now. And I just wanted to make an observation there is that long COVID, and you said, like how much of a struggle it is to do just the normal stuff. And when that struggle goes away, you're like, oh, God, this is how it is. It's almost like what used to be walking from A to B is now like the gladiators' travelator at the end of the eliminator course, right? That's the long COVID experience. You're desperately trying to run at this travelator and you're falling flat on your face to do things that other people can just do walking from A to B. And you've got off the travelator, it feels like. You've got to be careful, it doesn't switch on again, but fundamentally you're off it. Now, I've got better at doing the travelator, but I think I'm still on it. And I'm not trying to speak-- So you're doing that struggle. Very much so. Yeah. And I think that's when we sort of looked at that way, it's quite a sort of a visceral way of imagining what-- And this, I think, is what people who don't have long COVID don't understand is that doing a lot of the simple stuff is that gladiators' travelator for us. They see us doing it and they don't realize what it takes to do it. They just think it's the same as it is for them, which is fine and easy. And that's one of the challenges, I think, with the people around us. And that's a really interesting point, because that is also across the board. It is not just that we can't go to the gym or do physical exercise. It, for me, was super simple things that I have never had to think about before, the logistics of getting up and getting my children to school. When something that you have to do every single day becomes a mountain to climb, especially with the-- I don't know. There's just this cloud on your brain that makes everything-- things that should be so straightforward, things that you have done forever-- everything's a challenge. So-- 100%. You have recently done a fabulous series where you've talked through every single strategy, treatment, supplement that you've tried. And please do go and check that out. It's on Jez's YouTube channel. And what I found really interesting from this is that it is very, very different strategies that you and I have employed to get to this point. You have thrown a lot at-- a lot of quite medical, a lot of chance-en-drag interventions. And I have done it very much down a more holistic neurological route. But both of us, I think, have had wins from some of the things that we've done. Can you tell me from those 30 plus strategies?
that you talk about in your recent series. Is there anyone that stands out to you as being the thing for you? I'm not saying for everyone, and I think that is a big point that everyone's experiences say different. But what stood out for you? What's been the thing that's made the biggest difference for me? I think you said how you would come at stuff from a different perspective. There are maybe, I've only made two of the videos at the moment talking about everything I've tried. And the ones I've spoken about in the first two are mostly the physical interventions. But there have been things I've done that have made a huge difference to my well-being if not necessarily the condition itself. And that includes things like, I did a psilocybin experience for three hours, like a guided psilocybin experience. And oh my God, did a lot of grief and emotion and all sorts of stuff pour out of me. And my nervous system was in a completely different place after that than it was before. And my mental health was in a very different place after that than it was before. And that's the window into everything that we carry with us that feeds into that nervous system reaction, which is all part of the same puzzle. So there's different ways of trying to address this multifaceted super complex condition where so many of our different systems are tied into it. And I have tried some of that holistic type stuff too. And I also would say that in its own way, some of those interventions have been the most powerful because if they affect the way that you feel and the way that you are emotionally in your mood, that's a huge part of the puzzle, you know? Because-- - Be fascinating because all of the people that you and I speak to are generally working on different body systems or different parts of us or of the illness. And actually the interplay between all of those things. So the interplay between the neurology and what that's done to your heart and what's that that's done to your pain in the brain, that interplay of it all. And particularly the impact that changing those, sort of those holistic things, the impact that they can have on your immune system and on your hormones and on the chemical balance of your body is massive. So it's this duality of the science and the holistic and we shouldn't actually separate them out and we shouldn't say that certain things are non-scientific and certain things are, you know, the things that are termed holistic are somehow often viewed as woo-woo or not based in fact. But a lot of these things are actually centuries, thousands of years old. And it's only now that we're possibly understanding the science that has made them relevant for so long. - Completely agree. And I think long COVID is a condition where that sort of stuff is particularly relevant. More so than it is in other acute illnesses, for example. I think the complexity and the degree to which every single part of the body has fallen into this, well, not every single part of the body, but there is this multi-system dysfunction. And fundamentally everybody might find there is a different key to unlocking the body's response to that dysfunction and trying to get it back to home your status. And this is why when I tried to do my long COVID two and a half years video, I sort of tried to do a survey of the people who have recovered, what did they feel was the specific thing that helped was the key for them. And the responses were hugely different and it will be different for everybody. And that's the difficult thing is trying to find that key for us personally, whatever it is. - Yeah. - So my recent exploration, I don't know the big things I've tried recently is extended fasting. And that was queued by somebody who had recovered completely from a similar level of illness that I've had through doing extended fasting. He's now off surfing for three hours in Portugal and he's 100% better. And that was the key for me to get back. Well, that was his key. Maybe it could be the key for me too. And it hasn't so far been the key to prompt complete recovery for me, but it has led to a significant improvement in the number of my symptoms. And it has helped me understand what probably is driving a bunch of my symptoms too. Certainly a lot of my dysautonomic responses are now better as a result of having done those fasts. I'm still struggling with energy limits. I'm still struggling with pan. I probably have a couple more spoons than I used to, but the problem is, is that if I've gone from 10 spoons to 12 spoons, I still, the natural inclination when you've been used to living your whole life of 150 spoons, those two spoons, you'd spend them quickly, what I mean, right? They just get spent really quickly and easily. So you end up feeling the same, even if you're managing to do more. So that's one of the challenge again, is measuring progress. How do you quantify? And this is what I said about the height of the sea. How do you quantify where you're at? So people say to me, how are you now? Maybe 60%, 70% are you up from the 50% you were before? And I'm like, well, you can't put a number on it because what's my ability to go out and go for a run? Zero percent. What's my ability to play football? Two percent. I could do 90 seconds in goal. What's my ability to sit at a desk and do a couple of hours work? 80%. What's my ability to go out for a curry in a beer? Like, 1%. So it very much depends on how you're quantifying what you're able to do. And everything is so different across the board. And even then, all of those scores are gonna change, minute to minute, hour to hour, day to day. So, it's just pin the tail on the donkey. Like how you quantify where you're at. And I guess the simplest way of looking at it almost is, do you still feel like you're on the travel later? And I guess I still do. Yeah. So, you've tried intermittent fasting as well. A little bit of intermittent, but not huge. I've never done it reliably for a period of for a long period of time. Because I guess some people find their bodies get on really well with intermittent fasting. For me, I found it really hard. I just found my blood sugar levels crashed and it was really tough. And my body didn't like it. I felt worse whilst doing it. Weirdly, when you do the extended fast, your body gets into a fasting state and then you don't have that same cortisol reaction and blood sugar, conundrum. Because that's the thing, isn't it? I think there's so much information out there on social media in the press about various things that we should do. I would have a stage of your life that you are. There are things, the way that you should eat, the way that you should fast, the way that you should exercise. And some of the theories behind these things, I think are a little bit spun on their heads when you're suffering from one of these complex chronic illnesses because one of the things that a lot of any kind of restrict any kind of diet does is it can spike your cortisol. And if you're already in an adrenalized, a cortisol state, that's the last thing that you need. So it's really also working out how those rhythms of your body is one of the fundamental things that I would say is that if you can sort your sleep out somehow, it is an absolute game changer. But that all plays into that cortisol spiking, that plays into so much of the nervous system that it's regulation, which again, I guess shows the way that you can't take one part of this and remove it from the rest. But I have been worried about some of the more stringent fasts or, and this is something that I'd like to talk about, one of the things that made a huge difference for me is breath work, but again, there are some breath work techniques, which I actually think are detrimental. - Bimphoth? - Is that where you're going? - I'm not going to point fingers, but I did try that style of breath work about two years in and I was religious about it. And because of the high-preventilation and extreme breath holes, I think it's actually really, really not helpful for-- - I would recommend it to long-coded. - No, so taking things to extremes, I think with a lot of this is a problem, is too much stress on a body that is already overlaid it. And so I think one of the keys would be gentleness and anything that I've tried to do, and that's not necessarily natural for me when I'm a real force in terms of the way I operate my life, just finding that gentleness. - Gentleness with yourself as well, and with regards to your feelings to yourself. That's something I've always struggled with and it's particularly tough in this. Be gentle with yourself, forgive yourself, and not getting things right all the time, because any of that stuff, if you stop beating yourself up, again, that's the last thing you know of a system needs as well as your mental health, right? And a lot of us might have found in this long-coded journey that a lot of our old mental health coping mechanisms are no longer accessible to us. So we have to find new ways of managing this stuff. I used to throw myself into work. I used to go out and party. I used to run littural marathons. All of that stuff is no longer on the table. So I have to find new ways of having a release valve, new ways of finding peace in myself, of grounding myself, doing whatever it is I need. I think some might say finding how to actually sit with it instead of finding those distraction things might be one of the paths that we need to find because perhaps we've been for so long, not necessarily running from problems, but using coping mechanisms to mask our feelings. And there's a whole subject here, which trigger warning probably for some people if they're early in their long-coded journey, but long-coded is also an opportunity. Any trauma, any tragedy along with the curse, there also may come an opportunity.
which is an opportunity to, given enough time to process the event itself, to look at your life and the way your life is built and the way that your perceptions of your life are built and the way that you're. Just, it's given me, put it this way, it's given me a window to look at all sorts of things about the way I lived my life that maybe weren't entirely healthy and some, an opportunity to rebuild my life and go in a direction that is more grounded, that is better for me and for the people around me and that is less hyper or less adrenaline driven and actually more based around the more meaningful things in life rather than abstract ambitions and goals that seem to supplant the. so many of us in sort of modern life find ourselves driven by this sense of achievement, putting value on achievement as opposed to value on peace and simply being. And I think long COVID is an opportunity to find that peace in simply being that is there if we want to look for it but it's hard and it's a difficult place to get there and we have to get over ourselves to get there and that's been a journey for me that really has been. Yeah, I think within that my journey into mindfulness, into meditation has been huge and from the outside people might be thinking, don't tell me that I can cure this just by sitting and having a little think or a little non-think. I am not suggesting that anyone can cure an illness. And neither was I. No, I know. But I love that idea of taking the opportunity to reflect on yourself and really, really because you have so much time with yourself, by yourself start to actually listen to what's inside and how you are living in alignment with your tree self and how you are constantly pushing for that external validation for those goals that you have generally set for yourself. No one from the outside necessarily set them. No one said that you need to be doing this earning this running this number of miles. It's often not the outside. It's you that have set these goals and expectations for yourself. And once you're in this state of illness, that moment where you have to release all expectations is actually incredibly freeing and it took me a long time to come to terms with and you have to do it on a daily basis when you're in the thick of the illness. So sometimes it's just that you really, really wanted to go to your mom's birthday lunch. You really, really wanted to but you physically are completely unable and it's it's devastating at the times when all of these things are compounded. But at the same time, once you reach a point where you get into the mindset that, oh my goodness, today I've managed to go for a walk on the river. And I'm really, really grateful and thankful for that instead of always being disappointed by the things that you can't do. It's that real. You have to have this real mindset shift. I think another part of that mindset shift on a slightly sort of larger timescale is what's the point where in your illness where you stop trying to get back to the life you had before and start to accept that a life that you aspire to in the future is different to that life that you were pursuing before. And I mean, it took me probably, you know, if I got better tomorrow right now, what would I do? Would I jump back into my old life? No, I wouldn't. Because my path is now different. There would be things from it I would like to reenkel, but I'd like to be able to jog again. You know? There's certain things I'd like to be able to do. But fundamentally, I would not be living that same life. I wouldn't be jumping straight back in and that for me shifted probably two to three years in. And I think that is also a huge part of this too, but it's tied into that. And that also probably corresponded with the point in time where first thing I would do in the morning before picking up my phone is actually spend a few minutes breathing. Then I open my curtain and I let some daylight come in. And only after a certain amount of time do I pick up my phone right and that in itself is a reflection of how much stimulation you're trying to bring into your life. When I come down into the morning for breakfast, I open the back doors, I go out and I stand it before I've started doing anything else, I stand on the grass, whatever the weather is, in my pajamas, with the grass on my feet, even from being rained on. And I just spend 10, 15, 20 seconds just going, hello morning. And then I come in, never did that before. And again, these are just grounding principles just to appreciate the things that we do have. And I'm not saying this is going to make you better, but it's going to make you feel better about your life. Do we want to be miserable or do we want to be as happy as we can be at any given moment? After all, all there ever is is now. You start getting into worlds of philosophy, right? Are we living for the future? Are we living for now? I think long COVID teaches us in a funny way as awful as the now is, it sort of kicks us out of that whole place of living for the future that we maybe got trapped in in previous life. And we realize that we have to basically exist in the now and actually appreciate what they can be appreciated in the now even if most of it is awful, but just focus on the things that aren't. Yeah, because that is genuinely all you have is right here and now, especially as a lot of the time, the past is massively triggering because you're not there anymore. And the future is really, really so uncertain. So I think that's a great insight. And the details that you gave just then opening the curtains, checking in with your circadian rhythm, I do breath work every morning before I get out of bed. And and generally throughout the day and before I go to bed as well. But it's small things. It's the focus on the small things and it's, you know, if all you can do that morning is have a cup of tea. Just enjoy that cup of tea. You know, sorry if people can't drink tea. I will tell you that I have lived with I think master cell activation since maybe my whole life, but certainly since I was 18 since I got malaria when I was 18 and I wonder if that depletion of the liver caused by malaria is what really, really drove a master cell activation. I've been living with master cell activation since I was 18 and it got so bad in my long cave. I don't drink coffee. I don't drink alcohol. I can't eat most a lot of fruits. There's so many things that that trigger me smells and everything since my shift. I no longer have constant X-ma, literally I have not had hands which aren't ripped apart by X-ma since I was 18 years old and I have, you know, clear skin. So that I mentioned that just because of the the two thing, there are things that come back after you start getting better. And that's actually a point I want to touch on after you start getting better. There are things actually that fundamentally change about how you were before as well. That makes you consider what was going on in my body all those years. So that this has now reset when you just said previously talking about acceptance and not going back to that life, I do know some people and I'm interested in your take on this. I know some people who say that they will not consider themselves recovered unless they are back to their old life. And they think of that as a mindset. I mean, look, I don't think it's helpful. I think people are recovering and going back to old lives. And I guess it depends on what you call an old life, right? And whether there were things in that old life that were unhealthy that contributed potentially to the body falling into dysfunction. I'm not trying to victim blame here or say that anybody did things that but there is a reason it seems that there are certain correlations why some of us at certain points in life and all the rest of it with certain pre-existing factors and life scenarios altogether contribute to some of us getting along, Kevin and some of us not, right? And I don't know, it's a really tough one that right because I don't want to say anybody shouldn't feel like they can't go back to their old life if they want to. But at the same time, there is a little bit of I feel like we always have to go it's better to look forwards than backwards and and is there something that we can learn from this experience? Absolutely. That helps us go towards a better way. Yeah. And I think there's a lot of contention around the word recovery. Yes. Because for some people that really is back to the previous, I think I have recovered a large amount. I am not going to probably ever say that I am fully recovered, but I have recovered. I have made good steps, but I will never be able to go back to my previous life.
And I don't want to. Perhaps you don't want to. Yeah. And that's the point. I really don't want to. Yeah. Because I was living in that higher adrenaline state constantly for, for years, for my whole life. When I worked at broadcast news, it was relentless, relentless, and constantly on. And the first thing you do in the morning is you check your phone and you never, ever turn that phone off. And now, I mean, last week I spent the day with my kids and my nephew and niece and took them into, down into a gorge and went swimming in a river. And I had no mobile reception for eight hours or something. And it was absolutely bliss. In fact, I would say that I also went to, I took a trip to Costa Rica by myself in, in March. And I would say that putting my phone in a safe and having literally no constant WhatsApp's not checking my email was such a game changer for my nervous system. Because we do not realize, even when you're lying in bed, how connected we are by this technology and this pole to grow. And yeah. And when you remove it, you just, the release, the joy that you feel from just being, it's getting past that point where you feel the instinctive urge to reach for it. After a certain amount of time, you kind of, you lose that instinctive urge to reach for your phone or to get that stimulation. And that's the point where, where sort of the actual relaxation happens because you've actually broken that cycle of that pattern of stimulation behavior, stimulation seeking behavior. Yeah. I have a question which I have to ask and I don't know if you've spoken about on your podcast before. But what was it? Was there something that you did that precipitated this shift for you? So I've not spoken about this because I really on this podcast, I have not really shared very much of my personal journey and it is not necessarily something that I am going to advocate, but I will tell you what happened to me. I got the flu, which is the first time that I got an infection that wasn't COVID in in 95 years. So I had had COVID five or six times, but no other infection, not even a cold. I had not even my nose had not run in all of that time. And I don't know if that's because I was always masking and I was quite careful and obviously I lived in my bedroom a lot. So, but I had this whole where COVID came in and no other infections did. I caught the flu and so this is multifaceted. I caught the flu and from all the research that you and I have done. I decided not to take anything to suppress that fever because I thought I am going to get my immune system to actually mount a response and clean my system. I was sick for about eight days. I had fever of 104 degrees and at the end of it, I came around on day eight and my brain was back. Now, after that, I had to, I was absolutely crushingly exhausted. I had to go to bed without fail before 9 o'clock every night for months. I still had various symptoms, but the brain difference was just remarkable. And I then have spent six months doing religious breath work. I've actually trained in two different types of breath work now because I believe wholeheartedly in this idea of interview people about the acid-based dysregulation as well. And I do believe wholeheartedly that there's a huge symptom exacerbation. I think that I think from what I've just told you that we have viral persistence, but I think that a huge symptom exacerbation is that we all felt that we can look, I'm someone who's learned to breathe when I was 18 trained in breathing. But I think that we might all have breathing patterns that do not serve us. And whether that's triggered by the actual COVID itself, I didn't really have a cough or anything at any time. But I did feel massive fear whilst I had that first bout of COVID that I was going to die because I felt like I couldn't breathe in the night. And I was by myself in the night. And I, there were three or four nights where I thought I was going to die because I didn't, it wasn't like I was breathless, but I just didn't think that I could breathe. I wonder if that's some kind of trauma, trauma reaction, psychological reaction. I've got really good lung capacity so no one had ever commented that I possibly have a breathing pattern disorder. But learning, teaching myself to breathe has been huge. So my observation on your story is that it doesn't surprise me and B is suggest one of two things, either the immune response that was kicked into action by the flu. Also, for whatever reason managed to clear out any persistent virus that you had or it was such a shock to the immune system that it recalibrated the dysfunction that it got stuck in previously. So one of those two scenarios and fatigue post flu is really, really common. So even if you're healthy and you get the flu, you're knocked out for weeks afterwards. So that's normal. But I listen to my body and most yes, and old me would not have done it. I would have just. Yeah, so that's huge. I'm running out and juice a little bit, but we've got loads more to talk about, haven't we? I feel like I've got lots to talk about that I'd like to talk about. So one of the things I like to talk about is I'm just about to start doing some EMDR therapy. And this is a really interesting sort of hybrid approach to the holistic and the scientific in terms of long COVID in my opinion, because you it taps a little bit in. I mean, again, it's that whole controversial thing about trauma being a precursor to long COVID and the rest of it. But trauma is a precursor to nervous system dysfunction and nervous dysfunction is part of long COVID. And there's this sort of idea that there's the cell danger response, which is one of the theories for long COVID and that cell danger response, you can tie that into that idea of previous trauma and a body that's unable to basically switch off that mechanism of actually processing that. That's going to be I'm going to talk about it in due course on the channel, but I'm happy to talk about it here as well and sort of the rational for why it's something that I feel like I want to try. And my hopes for why it might make a difference. And even if it only improves my mental health win. Yeah, I see. And the thing else is a bonus. I mean, I think that's one of the things that I've done I've really focused on the my mental health because we haven't been able to get medical help. I've had headaches, migraines that would take me out for weeks at a time for five and a half years and I only just got to see a neurologist on the NHS two weeks ago. So in terms of the medical help, I felt like there wasn't a huge amount coming to me. So I really have focused on that mental mental health thing. And I think by doing that is that obviously had a huge impact on my physical health. So I think that we have huge amounts still to talk about. Do you think that we should come back to continue this conversation, explain what EMDR is and dive into the experience that you have of it and continue to explore the large shift and the small tweaks that have made a difference to us. Maybe we could go more in depth into the science behind the breath work and talk about some of the things that we have done that have really helped with our nervous system regulation. Is that something that you'd be keen to do? Yeah, yeah, that's great. We would be really interested to hear what you as our audience have thought of this conversation, whether you have enjoyed hearing some of the more personal side of things and feedback into us and tell us what is useful to you. If we continue to have episodes like this into spursing on will still do the science will still do those interviews. But if you like what we've done here today, we would love to hear from you and hear what you would like to know. Thank you so much for joining me today, Jess. It's been such a pleasure. Yeah, absolute pleasure. Thank you. I'm straight off to catch the flu. [laughs] 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. [Music]
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Podcast Summary
Key Points:
The podcast features two long COVID patients (Emily and Jess) discussing their personal experiences and strategies for managing complex chronic illness over 5+ years.
Both emphasize the variability and unpredictability of symptoms, using metaphors like "the height of the sea" or "the gladiators' travelator" to describe daily struggles.
Jess highlights the effectiveness of a guided psilocybin experience for emotional release and nervous system regulation, while Emily focuses on holistic approaches like breathwork and mindfulness.
Extended fasting helped Jess with dysautonomic symptoms but did not lead to full recovery, underscoring the individual nature of treatment responses.
Both stress the importance of gentleness, self-forgiveness, and finding new coping mechanisms when old ones (e.g., work, exercise) are no longer viable.
They view long COVID as an opportunity for personal reflection and rebuilding life around meaningful, grounded values rather than achievement-driven goals.
Summary:
In this episode of *Make Visible*, hosts Emily Kate Stevens and Jess Medinga share their personal journeys with long COVID, five and a half years after both contracted the virus on March 13, 2020. They acknowledge that no definitive answers exist for the condition, but they aim to offer hope and practical ideas based on their extensive research and interviews with hundreds of experts. Jess describes his current state as highly variable, comparing it to the fluctuating tide of the sea; he still experiences severe limitations, such as being unable to work full-time or engage in physical activities like running.
Emily notes significant improvement, particularly in cognitive function, but emphasizes the need for constant nervous system management. They discuss a range of strategies they have tried: Jess found a guided psilocybin experience transformative for emotional healing, while extended fasting improved his dysautonomia but not energy levels. Emily advocates for gentler approaches like breathwork and mindfulness, warning against extreme techniques that may spike cortisol.
Both agree that long COVID requires individualized treatment and that recovery is not linear. They highlight the importance of self-compassion and using the illness as an opportunity to reassess life priorities, moving away from achievement-driven habits toward peace and meaningful connections. The conversation underscores that while medical and holistic interventions can help, the journey is deeply personal and often involves learning to simply "be" rather than constantly strive.
FAQs
The hosts, Emily Kate Stevens and Jess Medinga, discuss their personal experiences with complex chronic illness, particularly long COVID, and share strategies that have helped their health and mental wellbeing.
Jess feels he is still 'on the travelator,' struggling with simple tasks, while Emily has reached a new normal where she is more functional but must balance her nervous system daily.
A guided psilocybin experience helped Jess release grief and emotion, significantly improving his nervous system and mental health.
Progress is hard to quantify because symptoms vary minute to minute, hour to hour, and day to day, and different activities have different ability levels.
Jess tried extended fasting based on another person's recovery, and while it didn't lead to complete recovery for him, it improved dysautonomic symptoms and helped him understand his symptom drivers.
They believe holistic methods, like breath work and mindfulness, can significantly impact the immune system, hormones, and chemical balance, and should not be separated from scientific approaches.
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