Episode 67 Luke Belfield: His JIA Story

In this inspiring episode, Debbie and Katy speak with Luke Belfield, the first known person with Juvenile Idiopathic Arthritis (JIA) to swim the English Channel. Diagnosed at 13 after years of pain and uncertainty, Luke shares how sport, resilience, and remission shaped his journey from struggling to walk to completing marathons, Ironmans, and a 36.66‑mile Channel swim. He opens up about stigma, bullying, mental health, and the power of finding community and offers hope to young people and families navigating JIA today.

Key Topics

• Luke’s diagnosis journey: swelling, misdiagnosis, steroids, and finally JIA
• Losing football, losing confidence and rebuilding identity through movement
• Why swimming became his mission to inspire children with arthritis
• Training for the Channel: tides, cold water, jellyfish, and a surprise shark
• Pain, resilience, remission, and learning to listen to his body
• Sport as medicine: movement, stretching, and building tolerance to inflammation
• Mental health tools: chess, juggling, meditation, inspiration from others
• Nutrition and lifestyle: Luke’s “non‑negotiable” anti‑inflammatory breakfast
• The importance of role models and community for young people with JIA
• What he’d tell his 13‑year‑old self
• What might be next: ultra‑distance triathlons and giving back to the community

Key words: JIA, Juvenile Idiopathic Arthritis, childhood arthritis, inflammatory arthritis, chronic illness, remission, arthritis stigma, invisible illness, English Channel swim, endurance sport, Ironman, triathlon, marathon, open‑water swimming, arthritis and sport, physio, stretching, strength training, arthritis flare, arthritis nutrition, stress and inflammation, sleep and arthritis, arthritis mental health, JIA awareness, arthritis advocacy.

Quotes

“My mission is to inspire and share my story to spread hope.”

“Sometimes it’s not the power of the curse, it’s the power you give the curse.”

“If gym is for the body, meditation is for the mind.”

“Find a role model with JIA. Message them. Chances are they want to help.”

Connections:

• Luke Belfield on Instagram: @arthritiswimmer
• Luke Belfield on YouTube: @arthritiswimmer

For more stories, support, and community: Inflammatory Arthritis UK, visit inflammatoryarthritis.org podcasts, resources, and lived‑experience advocacy.

Follow us on social media search for Inflammatory Arthritis UK on Facebook, Instagram, Blue Sky, LinkedIn and YouTube.

Disclaimer: Debbie and Katy are not medical professionals. They share personal experiences of living with IA to build connection and community. The podcast is for informational purposes only and is not intended to replace professional medical advice. We talk about our personal health journeys, and the podcast is not intended to provide professional medical advice, diagnosis, or treatment. We are not medical professionals and in no way claim to be medically trained. The podcast does not take responsibility for any losses, damages, or liabilities that may arise from the use of the podcast. The podcast does not assume responsibility for the accuracy of third-party content. For more information, head to https://inflammatoryarthritis.org/

Debbie: Hello and welcome to Inflammatory with Debbie.

Katy: and Katy

Debbie: We’re delighted to be joined by Luke Belfield today. He was diagnosed at the age of 13 with juvenile idiopathic arthritis. And last month he was the first person with JIA to actually swim the channel. for those not in the UK, is the distance between the UK and France. And it is incredibly tough because not many people actually do that, whether they have inflammatory arthritis or not. So, Luke, welcome. And how, what made you decide to swim the channel?

Luke Belfield: Yeah, there’s a plethora of reasons why. I guess probably the most vulnerable one is that I don’t know what my what’s possible within my body and I always love to push, you know, what is possible within my body. I mean the main reason being like look, I’ve run marathons, I’ve done three half ironmans, I’ve done four ironmans as well, but there’s a dichotomy that arthritis limits sport and swimming is different, you know. And I wanted to showcase swimming as a sport. You know, it’s a non-contact, non-impact, non-weight-bearing sport recommended by doctors and by physios. So therefore, if I pour my energy into something like that, I’m hoping that I can inspire other people and other, hopefully children, to to swim. You know, my mission is to inspire and share my story to spread hope. I work with doctors, patients, parents, researchers to raise awareness that, you know, arthritis is not just an old person’s disease and that there is hope, you know, and yeah, I think that’s the that’s one of the key reasons, but there’s a plethora of reasons why.

Katy: That’s absolutely amazing. And can you take us back to the training and how long did you have to train for? So obviously if you’ve done Ironmans in the past, swimming isn’t something that’s new to you. You’ve had to swim in open water before, but how do you actually train to swim the channel?

Luke Belfield: Yeah, so very quickly I got into swimming through triathlon through training for my first Iron Man, which is a two-point four-mile swim, a hundred- and twelve-mile bike, and then a marathon after. So I’d never actually really swum before that. So, I was going into it very like I don’t know what I’m gonna do. but on that training, I actually swam from Gossport to the Isle of Wight. It was my first time doing it, and I was totally inspired by this guy who said that he’s done something, a triathlon called the arch to arc. and in it, embedded in it, is the channel. And I was like, wait, people swim the channel? And he was like, Yeah. So next day, literally, naive to start, stubborn to finish, I signed up, thinking, yeah, thinking, yeah, just totally thinking, like, you know,

Katy: Amazing! my gosh! And how far is the swim?

Luke Belfield: So the swim point to point, it’s 21 miles.

Katy: Wow.

Luke Belfield: However, my route. I took a little bit longer. So I managed to do 36.66 miles, which is yeah, just a little bit longer.

Katy: Just a little bit.

Debbie: Why?

Luke Belfield: That’s because of the tides, the winds, and the weather really. So that’s 2373 lengths of a 25 meter pool. so yeah.

Debbie: Gosh.

Luke Belfield: So it took me 16 hours and 43 minutes. I was the 2755th person to swim it.

Katy: Wow, so like a marathon, millions of people have run a marathon, but that’s incredible that just over 2,000 people have swum the channel.

Luke Belfield: Exactly. And I’m the first known person with juvenile arthritis to do it as well. quickly some of the rules are that you’re not allowed to touch the boat, you’re not allowed to be in a wetsuit and they’re freezing temperatures. It was roughly eighteen degrees for me, which is very, very warm, but to the average person it’s probably a little bit cold. and I started in the pitch black, so I started off at two fifty-six AM swimming with jellyfish,

Debbie: I was going to say were there jellyfish because that’s generally what you see when people do it.

Luke Belfield: Yeah. There were lots and lots of jellyfish, especially in the middle part, the separation zone, because it’s almost like the M25 where you’ve got the boats, the cargo ships going one way like that, and the other cargo ships going that way. So you’ve got this middle strip. So there that’s where the jellyfish kind of hoard, if you like. So there’s this amazing shot of me swimming through about 50 jellyfish from the GoPro under the water. and then there are different types of jellyfish as well. Unfortunately, there were compass and mauve, and these ones burn. They’re also blue and moon and sailor by the winds, but it’s the compass that really really hurt. The compass and the mauve really sting.

Katy: Okay, so how many stings did you get? Yeah, okay.

Luke Belfield: Yeah. I lost count. Hour two, it was pitch black and a compass got me right on the head. And you would think like because I’m wearing a swim cap, you would think that that would serve as a little bit of protection. But for the next four hours I just felt like this area just throbbing. It was quite funny.

Katy: But living with inflammatory arthritis, you’re quite used to pain. So do you think that helps?

Luke Belfield: In a way, yes, it does. and I think there’s many quotes that I’ve got in my head with trying to reconcile why I do what I do. You know, one of them is, you know, like right now, be in this moment, but right now, it you know, it will be one day. It’s one day to achieve greatness. Tomorrow, regardless, it’s going to be over, whether I’m in my bed, like being, what if or whether I’m with my friends out celebrating like, I managed to do it. And, you know, I think having that hope and kind of looking towards a future is super important, when you’re kind of in that moment of pain. So yeah.

Debbie: And how’s your body now after the swim?

Luke Belfield: Yeah, it’s completely fine. I mean, I got out and I actually swam the next day with my friends in the seas. So I mean Well,

Katy: Wow.

Debbie: Well, it didn’t put you off.

Luke Belfield: I’ll tell you what might have put me off a little bit is that I saw a dogfish shark. So

Debbie: Nice!

Luke Belfield: I’ve been telling everyone on this channel, yeah, there’s no sharks, or if you’ll be extremely unlucky if you see a shark. So, I’m swimming and I’m looking down and I see this like one meter torpedo shark like thing and I’m like there is no way that that is a shark so I breathe to the left I keep swimming and like that is a shark like it’s got the two dorsal fins it’s got that amazing tail that really long tail at the at the top and the low one and the way it was slinking like this and the thing about dogfish sharks is I didn’t know at the time what it was but they’re quite small so I was like that’s a baby shark where is its parent that’s all I was thinking and I was like my god okay I was like don’t think about it. Focus on the bigger goal. You know, like you’ve exactly in the wise words of Dory, exactly, just keep swimming, exactly.

Debbie: Yes, the Dory thing, Yeah, Just keeps going. bless. Yeah, I

Katy: Keep swimming, just keep moving.

Debbie: I don’t think they’re dangerous at all, because I love sharks and I’ve swam with sharks before, but more like tiger sand sharks, which are quite dangerous, but these ones are not. They’re fine. So yeah, so if you want to go swim the channel, please do. Don’t let that put you off. But just saying.

Luke Belfield: Yeah.

Debbie: But your body was okay and you, I can’t believe you went back swimming the day after

Luke Belfield: And I think that’s because, my body is in remission and thankfully it has been for the last ten years. I’ve managed to really, I guess, manage my condition quite well. I’d like to think, but you know, you never know when you relapse or what causes a relapse, which is a big part of why I do this stuff. It’s like, you know, number one, like let’s say that it comes back tomorrow, I will think, Well, you know what? Whilst I was in remission, I made the best use of my body.

Katy: Yes.

Luke Belfield: and I did everything that I wanted to do. You know, I’ve done my Iron Man’s, I’ve done my channel. And then also whilst I’ve got it, then it’s a thing of, well, if I can get over to France, like, you know, this is this is inflammation right now.

Katy: You can get through it, can’t you? Yeah. Yeah.

Luke Belfield: I exactly it gives you more energy into the cookie pot. So like and then it’s a thing of okay, the doctor’s telling me to do stretches or the physio sow me to do stretches three times a day. I’ve done the fitness, I’ve done the hard parts, like let me focus more of my energy on on stretching, which is very similar to like squats and like one legged deadlifts to strengthen ankles. So so yeah, it’s that thing of yeah, being really resilient and being in the in the habit of doing those exercises, but just trading off for you.

Katy: Yeah, I do think sort of sport and movement is something that’s really incredible for kind of building people’s resilience. So, I was just quite keen if you could take us back to actually when you were diagnosed at 13 and sort of what that journey looked like to diagnosis.

Luke Belfield: Sure. So, at the age of eleven, my ankle swelled to the size of a tennis ball. then pain eventually spread to my hips, my knees, and my parents tried everything that they possibly could to get me onto the right path. We went from I think we went to five or six different hospitals. I had steroids pumped into my ankle, and nothing worked and no one knew what it was. And two long years later I was diagnosed as juvenile idiopathic arthritis. And my parents, in a way, were relieved that they’d finally figured out exactly what it was. But for me, that was the start. I’ve now got this old person’s disease. How am I gonna even begin to tell this to my friends? and it was a thing of actually, you know what? I’m not.

Katy: Okay. I was going to ask that because like 13 year old boys can be really cruel, can’t they? In my experience. Not, yeah, not.

Luke Belfield: They can be and unfortunately.

Debbie: and girls as well, not just boys, the girls can be quite awful as well, so yes. Yes.

Katy: Not all, but you know.

Luke Belfield: Yeah, and this was a transition just when I was moving from primary school to secondary school. And for me, football was my life. It was my passion. It was how I’d made all my network of friends. And I was quite good at it as well. So, to have that in year seven being taken away from me and you know, being the PE’s assistant, you know, sitting on the sidelines and being very quiet and not telling anyone what I’m going through and why. It was it was soul destroying. And I I think that’s a big reason now why I’m so open and on social media and vulnerable about it. Because firstly I want to obliterate that stigma that it just impacts older people. And secondly, hopefully by sharing my story, children will get diagnosed quicker. And the amount of like swimmers, even doctors that I speak to, they’re like, I’ve not heard of arthritis in younger children, and it’s like Okay, this this exists like so I’m hoping to raise the profile of it and spread that hope as well because at eleven, really at thirteen, I had no idea of anyone with it, like I had no role models or anything, and the charities, you know, like  the one that you’ve got, like spreading s awareness through podcasts and everything to in still hope in, you know, parents and the children going through it, it is just phenomenal. So I wanna pay it forward by sharing my story and showing what is possible once you’re in remission.

Debbie: Yeah, I completely agree. You were the age when my daughter got diagnosed as well, but she was 11 years, she was slightly younger, but she was going through that transition as well from junior school up onto secondary school and trying to tell the schools as well. I’ve had a few issues. How were the schools with you though?

Luke Belfield: Yeah, the schools were mainly understanding. I think I was quite

Debbie: good.

Luke Belfield: a studious pupil, which helped but it was a thing where I felt very invisible because I didn’t know who to talk to like was far from cool. So really at about fourteen fifteen I just learned, you know what? Let me focus on my studies. And you know, sometimes it’s not the power of the curse, it’s the power you give the curse. And, you know, like I managed from there to study maths at a Russell Group University and I don’t think I would have actually ever managed to do that because I was someone who really liked being sociable. because I focused on my

Katy: Yeah, so there’s always a silver lining, isn’t there? Yeah.

Luke Belfield: Exactly, it’s where you pour your energy into and yeah, as I said, it’s not the power of the curse, it’s the power you give it.

Debbie: Yeah, I completely agree. we are recording, in August and the A level results came out yesterday. What would you give someone who is going through just getting their results may not be what they wanted or it could be what they wanted going off to university? or work What would you tell those people who have JIA and their parents as well? Obviously you talk about hope and everything, but in that moment it can be very, very daunting.

Luke Belfield: Yeah, unfortunately I don’t have a good answer for that. I was quite lucky because at the age of around sixteen, seventeen, it it had self-resolved and that was because of the DMAD’s and the NSAIDs that was on it. Unfortunately, at the time we didn’t have the amazing immunosuppressants that you kind of have now. So I went to the same secondary school and then to the same college within that secondary school. And there everyone knew I was limping, you know, I was on crutches and even one point in, you know. So but at university I could be anyone that I wanted to be. and that was really liberating and freeing because it was a thing of that’s all in the rearview mirror, I’m gonna completely forget about all of that. one of the things that actually I I experienced was fair amount of bullying when I was younger. so around 13 I remember people saying, you know, run, run, run, I’m sure you can do it. La la la la. Like obviously and me just being exactly

Katy: that’s awful.

Luke Belfield: Peg leg and all these different names. And it was it was hard. And I remember, you know, having this vivid nightmare of like bullies chasing me when I was younger. And that went all the way, even though I didn’t have arthritis to us, that went all the way into adulthood. I used to have that same recurring nightmare. And  it wasn’t until I decided to do my first marathon that actually it resolved that because then it was a thing of subconsciously resolving it like I can run exactly

Katy: You can do it. yeah, yeah. and so what, so do you think that was the I guess catalyst to you looking to do marathons and then obviously progressing to Ironman’s and stuff?

Luke Belfield: Yeah, I I think it it was. I was heavily into the gym. My physio, when I was a lot younger, said to me, you know, these are squats, you know, like they really strengthen your legs. And it was a thing of when I got to the gym, I was like, I know this movement, and now I’m adding weight, and I’m actually I’m seeing, you know, really cool people doing squats and becoming really big. So, and that’s what I wanted to do. but there came this point where I was very focused on strength training and nothing else. I’d never run before and I was like what’s the epitome of a cardio exercise and running was that so I was like one day when I re after I relapsed because I relapsed when I was 24 and that’s when I went onto my immunosuppressants I inject myself with every fortnight and still do to this day

that was when I was like right I’m gonna run a marathon one day and it was still even then I didn’t tell a soul about arthritis that I had it it was only really my close family who knew they obviously could see that I was limping and everything. And when I was working at a company, I had a mentor and I said to her, you know, I’m running this marathon. She said, are you doing it for charity? I’m like, no, that’s not really my kind of thing. I you know, I don’t think and she was like, Well, you know, you should do it for charity and you should do it for one that you really deeply care about. And immediately I was thinking, Wouldn’t it be great if I did it for an arthritis charity? And she then said, well, and then I actually told her it was like a really random thing because I don’t do that. And then she said, Well, look, why don’t you just create the page? And if you decide to share it, you know, you can. And if you decide that you, it’s too vulnerable and you don’t like it, then you don’t have to. I think I was about the first paragraph in, and I was like, You know what, Luke, you’ve got to share this and that was the big snowball effect, and then going to my

Katy: And that was, was that the sort of start of sharing your journey and sort of everything that you’ve been through?

Luke Belfield: Exactly. And I was petrified of telling, my high school friends and even my university friends who didn’t have a Scooby,

Katy: So they didn’t know.

Luke Belfield: No, they didn’t. They didn’t. They knew obviously that I had issues. I just said it was like, I’ve got a dodgy leg. But the thing is like, because a lot of my friends that went to my primary school went to my secondary school. so I did have a little bit of a network there and, I had, people who played football and everything. So I said, you know, I’m really good at football, but right now I’m just going through some pain, and it just came this thing of again and again and again and eventually. But I think it’s so important for someone going sorry, to come back to your question around you know, how to manage it. I think sport is amazing and what you can do is great. So, when I was younger, I focused actually on badminton when it could start to move and it wasn’t my number one chosen sport, but actually it gave me so much confidence to just be able to move. And you know, badminton was great as well because you know it’s in short bursts, you can actually say, Right, I’m gonna take a quick break a and then yeah, you’re moving and then you get better at about it and you get more confidence and it really helps from there.

Debbie: Badminton is actually a really good sport to do because obviously the shuttlecock is very light as well when it’s not like a tennis ball when it kind of the impact that has on your wrist.

Katy: Force isn’t, yeah.

Debbie: Yes, I know that that’s fantastic. And I must admit, I think sport is so underrated. And I think unfortunately, with children with JIA as parents and someone who kind of went through it as well, just thinking, my god, my child’s going to be in pain, they can’t do PE, but actually the schools need to work with them and actually say, you need to continue, but how can we help you? Sort of thing. And I know it’s hard when, yeah. Cause my daughter

Katy: Yes, yeah, rather than sitting on the sidelines being, yeah, yeah.

Debbie: was exactly the same and she, her ankle was so swollen on sports day, but she loves sports. And they were like, well, she’ll just have to sit out. And I was thinking she’s not going to sit out. So I didn’t even put her through that because that would have been torture for us. So we actually had the day off. But I think we have to work with the schools and it’s great that you Luke had a physio and my daughter did, but I’ve never had a physio at all. And I think medication is always one part of it, but the whole treatment, the sport and the movement has to be there. It’s that mental side as well that you don’t realise helps you and Katy, you know that as well.

Katy: Yeah. How have you found through the years, Luke, managing your mental health alongside the condition and what tools have you found have worked for you?

Luke Belfield: I will answer this question and I want to go back because there’s something really passionate about. But for me, mental health. Yeah, I think it’s if you can’t focus on X, focus on Y. So, kind of what I was saying about Badminton before. Like, what are some of the traits of football that I could apply to something else? Something like chess or juggling. I absolutely love them both.

Katy: Yep. Amazing.

Luke Belfield: And yeah, like and you can get so much better at chess really, really quickly, and you keep that competitive edge. Juggling Great for hand-eye coordination and it’s so satisfying once you learn new patterns and everything. So, and then it’s reading up there as well, you know. Like

Katy: Still never, I still can’t juggle, but anyway, yeah, I’ll take your word for it. Yeah.

Debbie: We’ll teach you.

Luke Belfield: I mean, I listen more to podcasts and to audible stuff to be honest, rather than actually reading physical books. But that inspiration piece, I that is before I have a big event, I will always listen to someone doing something much harder. And luckily, because I’m in that channel swimming community group where I get to speak to you know, world record holders, Olympians, I have access to that. So literally it feels like to me now they’re like normal people. but you know having that inspiration piece I think is so, so important. And that drives me to want to be better. And if I do go for a flare like of Uveitis or, you know, I’ve got, you know, I feel a bit of pain that I know is arthritis related, like my toe or my fingers, then it’s a thing of okay, let me get back to my stretches now so that I can get back to kind of doing what I love. and to the second point around sport. You’re spot on Debbie about you know we need to somehow get these kids doing other sports that not necessarily competing against but like competing against yourself. And I think swimming is that perfect medium which is a big reason why I chose that channel swim because it was like what’s the best way that I could inspire someone to do something like that? And that was it. It all kind of made sense. It all all the pieces kind of added up and it was like, well, on my body, I know that it won’t be too taxing because, it’s swimming. And then obviously as you go along you learn more and more and it’s like, yeah, actually no, this is gonna be quite hard but yeah, having sport is I think it’s so important. I’m not a scientist, but some of the other podcasts I listen to talk about inflammation. And, when you do sport, I think you become more resilient to the inflammation, your body handles inflammation better. So there’s a higher tolerance. And I think that’s yeah, that’s great.

Katy: Yeah.

Debbie: Yeah.

Katy: So you’ve done some incredible things. So you’ve obviously recently swum the channel. You’ve done a number of marathons, Ironmans. What’s next?

Debbie: Not to put you on the spot, but we will.

Luke Belfield: So I I kind of know what’s next. but I haven’t I haven’t properly I haven’t committed to anything yet. For the moment, I really want to give back to the swimming community because they have been wonderful. I want to talk more about arthritis and that sense as well. So I really want to give back to those communities because they’ve helped me so much on my journey, and I feel like I have done something big. So giving back is really important. If we’re talking about what’s next, so I would love to do a longer triathlon. There is something called the arch to arc. I’m not saying that I’m gonna do this one, but would like to do half the volume. but an arch to arc is you run from Marble Arch to Dover, you then swim the English Channel, and then you cycle from Calais to the Arc de Triumph. And there’s two like triathlons which are very similar. They’re half the distance. there’s one called the Lighthouse Ultra 180, and then there’s a Lanza one set up by the Arch to Art people as well. And I’ve been training with them. we’ll see how that goes because ultra marathon, there is a lot of run walk, which would suit me well. I think the other thing that I actually haven’t mentioned is when I was in the gym, you kind of create more of a holistic lifestyle because you want to get stronger. So for example, like you start off by lifting some weights and you’re like, okay, this is great. And then someone in the gym tells you, Well, that’s good, but have you dialed in your nutrition? Like Are you eating organic chicken breasts? or you if you’re vegan, are you eating, pulses? And then that makes you want to get the best out of your workout. So then you switch more to your nutrition. And then that’s when you realize or I realize anyway, like, you know, food is our, you know, you are what you eat. So if I can control my arthritis when I’m taking my injections, you know, I I usually don’t go out the next day. I have turmeric, I have garlic  in my porridge every single day I have spirulina, I have cacao powder, macro powder, I have buckwheat. So this is it’s a bit gross. Yeah, it’s

Katy: Spirulina? I’ve never heard of it.

Luke Belfield: It’s basically seaweed. It’s like grounded up seaweed.

Katy: I love seaweed. I love seaweed. I’ve got, I have seaweed as a snack. Okay.

Luke Belfield: Yeah, it’s so good for you. It’s so, so good for you. and then I have like hemp seeds, chia seeds, and you know, these have more omega free than salmon gram for gram. And I’m having this in my breakfast every day, so I’m controlling it through my nutrition. You know, it’s like that preventative course. Exactly. It’s prevention, not cure, as well as it’s so important to have both, right? Like,

Katy: As well as through the medication. Yeah. Yes.

Luke Belfield: You know, just because you’re doing one doesn’t mean that you can’t exactly.

Katy: Mean everything. You can’t bring everything together. And that’s, think, I think that’s the missing piece when you go to see a consultant is they treat the sort of medical side, but quite often there isn’t the time to kind of have that holistic conversation around somebody’s like true lifestyle and how you can make, even if it’s just tiny tweaks, you don’t have to go super at this end or this, you know, it’s just tweaking things just to try and building what you can to make everything better. Yeah.

Luke Belfield: It’s that balance, isn’t it? And this is a this is a great thing about my breakfast, is I know that my breakfast is non-negotiable. I enjoy it. I have loads of blueberries, strawberries, all these other kind of fruits in it as well. Sometimes yogurt, sometimes buckwheat. and I know that I’ve at least had one good meal that day. I know that one hundred percent. And then if, I’m busy or, I’m going out with friends, I know that I’ve done that one good meal a day.

Katy: That’s, yeah, having a good start to the day sets a good intention, doesn’t it?

Luke Belfield: Exactly, exactly. and then also, you know, there’s a thing of sleep as well. Sleep is so important, but that’s I find that so much harder to control than kind of what you put into your mouth and s you know, going to the gym or going to the pool or going for a run. But usually these things all impact each other. You know, having that extra melatonin from cherries or something like that can make you sleep better and then it’s a thing of well, how can I get blackout blinds or a white noise machine or, you know, use Himalayan salt lamps. I’ve literally tried it all. I’ll tell you that. But

Debbie: I think I could just do with some air con at the moment because I must admit I did not sleep well last night it was the hottest day yesterday but as you say that does impact you though because then I feel so much more fatigued but then I think it’s also try not to worry too much because otherwise I can and other people can put so much pressure on yourself as well and it’s like well I should therefore shouldn’t have a takeout tonight but actually why not you know

Luke Belfield: I think you’re your spot, and I think it is all balance. I

Katy: But it’s all balance. It’s all balance.

Luke Belfield: I think cortisol is the root of all evil, in my opinion. I mean I know obviously you need some cortisol in order to do stuff like sort of the channel, but I’ve found every flare that I’ve had in my life, for some reason it’s re it’s linked to because I’ve been a bit stressed out about something which hasn’t enabled my sleep or my nutrition goes down. And I think, yeah, finding those strategies, having like well, I have this. I think it’s like a 30-page word document about like how what’s best to do when I’m stressed out. And you know, if I can’t do X, then I do Y. If I can’t do Y, then I do Z, then I go back to A. And, you know, these things, they just they help me get back to my baseline. And that’s what it’s all about. It’s getting back to that baseline as quickly as you can. I also do think I agree that, monitoring stuff. I’m a massive data nerd because I’m in software engineering. But if you can monitor and track things, it is better because you learn from those strategies. If you’re not that type of person that doesn’t like to do that and it stresses you out, what I would recommend is have a week where you do it. So, you might be stressed out for that week, but try different things in that week. Exactly.

Katy: And see what happens. Yeah, cause I’m not a fan of like, I’ve done things where I’ve like been trying to track my protein. Then I just get really annoyed because I find it really hard. I get fed up of having to log everything. So definitely I fall in that category where I get frustrated by tracking stuff but agree sometimes it’s useful and it’s a useful kind of insight.

Luke Belfield: Yeah.

Debbie: Yeah. And it’s also learning that everyone, everyone’s different. So what your 30 page is, it would be very, very different to mine and to Katie’s as well. And I think that’s again, just something that as us as a community, we need to realize that what works for some may not work for others, but it’s just sometimes just hearing those useful tips and actually go, I’ll try that. And sometimes great, I’ve learned something new and that does work. But then if it doesn’t, don’t beat yourself up about it, because I think that’s again, with these conditions, that’s what we’re very good at. So yeah, but  we’re going to finish in a moment, but just thinking one last question. What would you say to your 13-year-old self when you were diagnosed? What advice would you give yourself?

Luke Belfield: I think it’s really hard. because obviously I know what I know now, but I can’t go back in that time and tell myself, like pontificate all of the things that I know where I’m like, you gotta do this, you gotta do that, and then that would be putting stress on myself. At that time, the best thing for me was to just shut it out and to you know, like ignore it and not be open about it and not tell anyone. At that time, that was a strategy that I took. I guess for me now, that is absolutely not the right strategy. But just what you’re saying, like I I think there’s a thing of feel the feels, right? So, like try to acknowledge what you’re going through and listen to it. And I I think meditation; I talked about gym a lot. Meditation for me is is the game changer because if gym is for the body, meditations for the mind, and it’s really hard to master. What I would do is say to yourself, like if I was asking this to myself, I would say to myself, find a role model who has juvenile arthritis, and nowadays we have social media, so that’s much easier, and message them. Because chances are they want to help.

Katy: Yeah, they’ll want to, and but they’ll feel privileged that somebody wants to learn from them as well.

Luke Belfield: And then you get inspired, then you get more into the community, and then next thing you know, you’re that person giving back. And I think that’s where all the goodness comes from. That’s the keys to the good life.

Katy: I love that.

Debbie: Yeah, no, that’s fantastic. must admit, I have messaged Kathleen Turner. She was my idol growing up, but she hasn’t messaged back. So, if you’re listening, please message me back. But anyway, Luke thank you so much for giving up your time today. It’s been absolutely fascinating listening to your story and a massive congratulations on your achievement of swimming the channel. something I can’t imagine doing and is how tough that would have been. But thank you so much.

Luke Belfield: And thank you for everything you do as well. I mean, Inflammatory Arthritis UK is wonderful. I’ve listened to a few of your podcasts and just you know, they are really great. So thanks for raising that awareness that, arthritis isn’t just an old person’s disease. And hopefully we can help and inspire some people along the way. So, thanks for everything you do too.

Katy: Thank you.

Debbie: Thank you. And if people want to find you on social media, where can they look you up?

Luke Belfield: So, you can find me on Instagram @arthritiswimmer, or you can find me on YouTube @arthritiswimmer.

Debbie: Brilliant, thank you. all of these things will be on our show notes as well. please have a look through and get in touch with Luke as well. But thank you so much again, Luke. And until next time, Katy it’s goodbye.

Katy: Goodbye.