Episode 9

Episode 9 One Percent

Intro: We know how challenging it can be to live with IA, but who inspires us and why? Inflammatory with Debbie Wilson and Katie Peiris, navigating life with inflammatory arthritis.

Debbie: Hello and welcome to Inflammatory with Debbie and Katie. To coincide with World Book Day and International Women’s Day today we’ll be discussing who inspires us and what qualities to admire in each other and as looking after your well-being is a vital part of life, especially living with inflammatory arthritis and one way to do this is by reading.

So, we’re going to cover what books we’ve read to help us escape our day-to-day life. But Katy lovely to see you, how are you and what did you have on your pancakes?

Katy: Oh, great question, I love pancake day, I think it’s the best day in the traditional British calendar. So, on my pancakes I had some ham and some brie, so I had one savoury with ham and brie, inspired by our producer Nick. Then for my second pancake I had chocolate spread, what’s that, fish food, ice cream and some blueberries. What did you have on yours?

Debbie: I just go for what try to be this sweet but I don’t have sugar on it, I just have strawberries, raspberries and blueberries and that’s me. Very healthy. It was, so yes it was very nice and actually my husband came home and cooked for us which was lovely because I generally can’t cook pancakes, and we actually met through pancake day. When we were living next door to each other at uni, I was a bit put this way, had a bit too much alcohol in my system to actually cook but I knew the bloke next door was cooking pancakes so I asked him very nicely to come around and cook for us and so yes it’s his tradition now is to make me pancakes every year.

Katy: Has he always been under the thumb?

Debbie: No, but he’s going skiing tomorrow so he’s gonna have a lovely time with the boys.

Katy: lovely, very nice.

Debbie: So how was your week anyway, what have you been up to?

Katy: I’ve been really busy again, played tennis last night, I’ve been for a run this morning.

Debbie: Wow.

Katy: And the weekend we played netball, oh Monday night had one of the girls at netball pulled her quad, so we had fun and games with car logistics because she needed to go to A&E. I hadn’t driven, I’d got a lift and then we were faffing about for about half an hour with her in agonizing pain with a quad and I was deciding who’s driving a car where, where’s her mum going, who’s gonna pick her up from the hospital, who’s dropping her off at the hospital. Anyway, I got to drive a hybrid car that I’ve never done before so I drove her car home. So yeah, lots of adventures but my feet have been completely playing up at the moment so it’s a bit up and down. So, they’ve been, they’ve been really good for ages. I had orthotics fitted maybe two or three years ago, I’ve had them redone last June and then my feet seems to be playing up.

I don’t know whether it’s the change in weather or maybe I’m just doing a bit too much, so they just don’t like it. So, they’ve just been, I don’t know if you get it but sometimes as well it can be to do with my feet, my, sorry my shoes not being wide enough and my feet just need a bit more space. So, I have those spready out strange socks. I’ll post a photo on Instagram where they’re like glove socks.

Debbie: Yeah I think my daughter’s had some of them, yes.

Katy: And they actually, I know one thing I’ve not been doing is wearing those as regularly and for some reason just that little bit of toe spreading sort of relieves the annoyance in my feet and kind of puts your feet back into, into alignment and kind of their natural, natural thing.

Debbie: Have you ever spoken to a rheumatologist about your feet?

Katy: Yeah so they referred me to the orthotics team or whatever they’re called, the feet people.

Debbie: I’m just wondering if it’s to do with kind of like ligaments or anything else as well or is it more due to your inflammatory arthritis?

Katy:  I think it’s due to my inflammatory arthritis as far as I’ve been told. Right. So, I do get kind of swelling sometimes in my toe joints and specifically in my big toe joint and that’s something, because it’s not, it’s not measured in your DAS score is it? So, for those that don’t know DAS is your disease activity score which your rheumatologist should be doing with you sort of at most appointments but your feet are never measured, it’s just other joints in your body. Yeah. So it’s always frustrated me that because that used to be one of my main kind of pain areas in the early days.

Obviously my, my hands and wrists as well but my feet were a big part of my kind of initial problem. I do wonder why they don’t look at the feet to include it into the DAS score? To be honest I’m not really sure, they just never have and I think just as a reminder we’re not medically trained so some of these sort of questions we can’t, can’t answer but if you’ve got any questions like this we would always advise you to go and speak to your rheumatology team.

Debbie: That’s a really good point Katie and yeah please do go and speak to your medical teams. But getting back to what we’re discussing today who’s inspired you Katie in your life?

Katy: Oh, lots of people, that’s a big question actually. So I did have a little bit of think about this before today and I love gladiators.

Debbie: The film or the TV show?

Katy: Oh, the TV show, good to clarify. Right. And I used to love lightning and gladiators. I don’t know if you used to watch it but I wanted to grow up and be a gladiator. I think that’d be great in the gauntlet like just stopping people get through. So, I absolutely loved them. I used to want to be Supergirl as well.

Okay. I really liked like Supergirl the film. And Darcy Bussell, so I did a lot of dancing as a child so I used to love Darcy Bussell, but I think that was quite influenced by my sister because my sister was the sort of ballerina and I was more the like sports a bit heavy-footed baby elephant. Right. But I did, I used to watch kind of documentaries of Darcy Bussell a lot. And then Andre Agassi is my all-time favourite tennis player.

I’m currently reading, I mean I’ve currently been reading his autobiography for quite a long time, but I used to have a poster of him on my wall, ponytail and everything of him at Wimbledon. I’ve had lots of people and then I saw Martina Hingis in junior Wimbledon when she was about, I would have been about 11 or 12 and I think she would have been about 13 or 14 at the time and I really admired watching her and then it was quite nice to see her develop from playing at junior Wimbledon to then I think it was only maybe two years later did she win Wimbledon when she was 16. So, as you can see there’s quite a theme coming into mime. And then a more recent admiration is the Danish tennis player Caroline Wozniacki who got diagnosed with a form of inflammatory arthritis in 2018. And what I thought was quite fantastic was seeing her kind of drop out of tennis because of the disease. However, she made a comeback after she’d had her two kids, and she came back onto the tennis scene.

To go with the theme that I think we’re both party to is the fact that she didn’t let the disease stop her in what she wanted to do and I really, really admire that and think that’s something she should be very proud of to be able to get back to professional tennis. It’s not just going and hitting in the park.

Debbie: Yeah, I completely agree, Katy. I think she’s very inspirational. For me, when I was younger, because I never really spoke about my inflammatory arthritis, the first person I ever actually knew, even though she was famous, did have a type of inflammatory arthritis was Kathleen Turner. So, I grew up in the 80s and the 90s watching the rom-coms that she was in, Romancing the Stone, Jewel of the Nile, great films to be fair. And I then found out that she did have inflammatory arthritis. And it was just like, wow, there is someone like me living with these kinds of diseases. And looking and kind of Googling her, she did have time away from acting to deal with her. Because again, I think she was going through, in that era, there wasn’t as many medications as there are now.

Katy: Yeah, so that would be really hard.

Debbie: Yeah, and she did actually, I think, take a break from acting. But then when she came back, she was again, a bit of a theme here. Chandler’s dad in Friends, how controversial that is at the time, probably not so much. But also, Matthew Perry, who then played Chandler as well. I’ve read his autobiography. And I actually read that a few months before he died. And it was just reading. I love reading people’s stories and hearing their struggles in life. Because he was an amazing actor. He was so funny.

And I kind of grew up watching him. But knowing that behind the scenes, he was really struggling with diseases, obviously not inflammatory arthritis, but obviously addiction and other diseases as well. And it was really, that just resonated with me. Because I think this is how I’ve tried to have my life, especially growing up. I was always masking and trying to act well and everything. But then as soon as I go back to my bedroom, I would just be sitting there crying and just awful.

But knowing that other people go through similar, well, not maybe similar, but other struggles as well in life, I think that really resonates with me. And just obviously, when we’re talking about my nicknames, Jessica Rabbit was one of them. And I only found out that Kathleen Turner was the voice of Jessica Rabbit. I did not know that.

Katy: Another full circle moment.

Debbie: Exactly. Yes. I think she was really, really inspiring. And just seeing her now, back into acting and just kind of just living her life. I think I just admire that. And that’s kind of what I’d hoped for me as well. Because obviously I don’t plan, but for my future, I would just still like to be able to live life and just do what I want to do as well. But coming back to your theme on tennis, though, my favourite tennis player of all time is Rafa Nadal.

Katy: Great right arm,

Debbie: left arm. He’s left-handed. But he’s actually right-handed in real in kind of normal life, but he just plays left handed tennis. But anyway, but again, it’s kind of coming because I read his book about mainly it was all about the final of the 2008 Wimbledon men’s final. I don’t know if you saw that. It was like the match that was going to never end. It went on and it was dark and everything. It was the best tennis match ever, I think.

But reading his book again, it’s the injuries that he’s had. Again, I think that really resonates with me to actually see that he can have really bad injuries, but he can come back better and stronger. And I think that for me, really, I’ve really loved that in life.

Katy: And tennis is such a mental sport. It’s not just about the physical element. Obviously, they have to be very physically fit. But they’ve also got to have that kind of mental acumen. Because I think it was Roger Federer that said he only won 51% of points. And it’s really that mental attitude to be able to win those points when they really count in a game.

And I think you can circle that back to living with inflammatory arthritis. There’s probably going to be 49% of the time you don’t feel like doing anything. It’s about pulling yourself together, not that’s a bad term, for those 51% of the time to then be able to live as well as you want to.

Debbie: I’m just thinking out loud here, Katy. And what you’ve just said, it’s really such a good point that actually anyone living with a chronic illness, we really do have to kind of be more like sports people, more like athletes, to really kind of look after ourselves so we can have those moments, that 51% of living our lives, the best life that we can.

Katy: Yeah, because it’s looking at our, a bit like a sports person, it’s looking at how much rest you’re having, what you’re putting into your body for, you know, it’s not performance, but it is every living day. It is a performance kind of whether you’re just walking to the post box, whether you’re walking to the shop, getting dressed, having a shower, all those small tasks are, you know, it’s putting our bodies through a strain like a sports person is because our bodies are physically, have to work a bit harder sometimes, especially when you’re maybe fatigued or in pain, your body’s under more stress. So, you’ve got to look after it to be able to perform in inverted commas for your every day and to enjoy those moments when you can.

Debbie: Yeah. And again, it’s learning your limits and how far you can push yourself, you know, probably a bit like you Katy, kind of getting back to your feet. You may have kind of overdone it by, you know, going for a run today or something. So, it is just learning that, but it is that balance because you want to live your life. You want to kind of go and do things. You don’t want it to stop you from doing it. I think just sometimes it’s then just listening to your body, but I think everyone has to do it, whether you have influenced arthritis or not, not everyone can go do a marathon, for example, and it’s just learning what your body can and what your body can’t do. But then it’s kind of training it to then do what you want it to do.

Katy: Because I do think the more you slight, I mean, there’s a balance, the more you slightly push yourself, the more that enables you to do a bit like someone training for sport. They can’t hit a tennis, a serve at 120 miles an hour to begin with. They have to build up to that and they have to do all the hours in the gym to build up to that. But then through practice, what is it? Once you’ve done, I can’t remember the stats, but once you do like a hundred, something a hundred thousand times, it becomes kind of ingrained into your neurological pathways.

Debbie: Yeah, your muscle memory as well.

Katy: Your muscle memory. So, it’s a similar narrative, I think, for living with diseases that it kind of impacts your physical ability. And it just depends on the degree of how bad you are and what that looks like on a day-to-day basis. It’s going to be different for everybody, but whether it’s doing yoga in your bed, just a little bit of movement in your bed to then building up to be able to do something standing up or seated on a chair. It’s all those kinds of things that it’s those little, I hate it, the 1% thing that’s going around at the moment everywhere, doing 1% more to make yourself better each day. So just 1% of anything extra will have an incredible kind of impact by the end of the year. If 1% each week, you’re 1% better. How many times can I say 1%? Then carry on. But it’s just those 1% changes each day or each week will make you so much better. Within a year’s time, obviously, with this disease, sometimes you’ll go backward about 50% because something will happen, you’ll flare. But then it’s about having that mindset that just because you’ve gone backwards. So, tennis players, reading Agassiz’s book or

Debbie: Rafa Nadal’s, yes,

Katy: Federer.

Federer’s my favourite in that era. I hate Sampras, sorry. Just like Agassi, I dislike Sampras. But Agassi, he ended up being not a pro tennis player again. And he had to go back to all, I didn’t even know this, he had to go back to all the kind of like trying to get back to pro tournaments that he’d done when he was like 16 or 17. And he went back like so far, but he didn’t let that kind of ruin him. That is then what led him to win the French Open, which was the tournament that had been kind of bugging him for years, why he couldn’t win it.

Debbie: That Rafa won 14 times, that one.

Katy: And it basically, he had to dump Brock. And then that’s when his tennis career took off. Oh, okay. But it was, so he was in the mindset, actually, if there was nothing, if his kind of, if things within his family, his home life weren’t good, that affected his performance and what he could do each day. And I think, again, I think that that happens as well with your disease activity. Everything in your life, I hate the word well-being, but that was somebody else, actually, Fern Cotton, I’ve always quite admired, because of what she’s done from being like really in the limelight TV presenter, then she’s taken everything back into her own control by having her own podcast, running her own business. She’s still using all the skills that she learned being a TV presenter, but she’s taken back control and is doing it for herself. And that’s for her own mental health and for her own well-being, even though I hate that word. But to kind of build that narrative, and I’ve learned a lot from listening to her podcast, and I don’t always agree with things that people are saying on it, but you can take the bits that you like and then make those changes yourself to your every day.

Debbie: Yeah. Well, just going back to Nadal, reading his book, and then he obviously had a year out because his parents were divorcing. And it is kind of when that support network isn’t there, where do you go for support, whether you’re a tennis player or just anyone in life, it can really just throw you. And I think especially having inflammatory arthritis, you do need that support network, whether it is through us on this podcast or the charity or online, just having those people that you can really resonate with. And actually, your stories could be very different, but in some respects quite similar, because we’re always up and down with this disease.

Katy: As you’re saying that, I just wonder if there’s a bit of a flip side to this. And we all live in the world of social media and perfect lives. And there’s so many people, celebrities, influencers out there talking about everything that you have to do in a day. I hope that we’re not seen as perfect here because I absolutely, okay, I do quite a lot of exercise, but I fit that into my day by my son goes cycling to school and I run with him to school so that then that takes up a bit of my run and then I do a bit of a run to get home. And it’s just building it in because there’s these people that are like 5am in the gym. I know. Yes. Then they’re walking their children to school, then they look perfect. They’re doing their Mrs. Business. And this is the narrative. I don’t believe we can have it all. Something always has to flop.

Debbie: And for me, that would be literally me, and my disease would then flare even if I tried to do everything. Because I did years ago think about getting up because I do have a gym membership, but that’s mainly for my Pilates classes.

And it is, I should get up, but you know what? My body cannot get up because it doesn’t want to do it. So why would I push myself and then I would be screwed for the rest of the week basically just because I did that one thing. But then I think this brings back to kind of that 51% of actually that 49% that could really, really ruin you though for such a long time. And actually, it’s not worth it. So it is, again, the balancing act, but don’t think that you have to be perfect. You have to be the person, because I always look back and kind of think, well, when I was in my twenties, you know, I was a lot slimmer because again, also as we’re women, we do get slated for our bodies all the time.

And I think having inflammatory arthritis and when it’s then quite visible for our hands, you know, because obviously they’re the most looked at joints when they don’t look good, it actually, we are so self-conscious, and I wear them like baggy jumpers and I’m doing it now just to cover my hands. And actually, but we should be proud of what our bodies have been through. It’s trying to fight us every single day. Yes, we take the medications to kind of stop that, but it’s also just living with it and actually how we can just learn to love our bodies. And I think that’s something that I need to really try to do because I don’t, but I need to, because it’s going to get me through life. It’s already gone through so much.

Katy: Yeah. I mean, your body’s gone through loads in the last 40 years, which is one of the things I think is incredible about you that you’ve managed to, you know, not let that, you know, turn you into a misery gut.

Debbie: My husband might say something different.

Katy: But you’ve managed to stay positive, keep going with things. You’re so articulate. That was one of the things when I first met you, I think I saw you presenting on, I don’t know, some video thing and I was like, Oh my God, she’s so good. You intimidated me.

Debbie: It’s only me. No, but I kind of think for you though, when I met you, it was your zest for life. It’s just, it’s just infectious. It really is. And again, you’ve been through so much and kind of every time I have a conversation with you, I learn something new and fascinating that, you know, none of us have got easy lives.

There’s no such thing as an easy life anyway but then having a disease in kind of like your prime of life in your twenties, that must’ve, I can’t imagine what that would have been like at all. And I just have so much admiration for you just to kind of, again, it’s that positivity, which I think obviously our friendship is really built on, but knowing that both of us can have really crap days though, but it is just, just trying to then get over that and be actually know it’s kind of, as you say, I think it’s that 1% thing. Every time you have a flare, or you go through a really bad time, mentally, I think you’ve grown 1% and actually then when the time you then have another flare, you don’t go back as bad as you were sort of thing.

It’s trying to build on that. I’m thinking of economy here and, you know, peaks in trust, you know, but it’s just kind of, it is a bit like that is how we live our lives. But knowing that actually you can get back to where you were that little bit stronger as well.

Katy: Yeah. And I still believe this is the best thing that ever happened to me, this disease in terms of turning me into who I am. I wouldn’t be who I am today without it.

Debbie: Yeah. And I think, you know, for me, obviously having my daughter with it as well. And I just think, you know, I’m hoping if anything in my life that she can kind of, in a way, look up to me and go, actually, well, my mum did that. You know, we climbed Mount Snowdon, we’ve done the Brecon Beacons and yeah, she didn’t have the disease at the time and we had to slow her down. And me and my husband were just like, oh my God, we are so unfit. But it was the best day of our lives. And we will always remember that. But I just want her to know that actually this never stopped my mum from doing anything. So why should it stop me? But I will, you know, be in the background panicking about her and worrying about her because she had a slight flare up at the weekend and it was just like, right, okay.

But for me, it’s just that feeling that, okay, she’s flaring, but what can we do? How can she kind of not do so much? Because she does everything. And it’s just making sure that, again, it’s just that balance. But I think as also a teenager, trying to tell her not to do things is never going to go well.

Katy: No, no, no, no, no. It’s about her learning to, like you have, learning to deal with those situations and then manage it herself. Because I guess this is something I was talking to one of the mums about, like your kids, you’ve got to empower them to make their own decisions in life and your job is to empower them and to be there to support, but they’ve got to make their own way.

Debbie: Yeah. Well, I think this is exactly what we’re trying to do with this podcast is to support people and give them, our stories do resonate with people, but they can kind of pick things up that say, actually that might work for me and try that sort of thing. But not everything will work for everyone because everyone’s different and every journey with inflammatory arthritis is different. But I’ve really enjoyed today, Katy. I do think you’re a really inspirational person and I do really hope that this podcast is helping people, you know, have that support network that they need. So, thank you so much for listening.

Please do sign up to our newsletters at inflammatoryarthritis.org. Follow us on social media. We’re on Bluesky, Instagram, Facebook, and LinkedIn. And until next week, goodbye.

Katy: Goodbye.

Playing Agassi winning.

Episode Title: One Percent

In this episode, Debbie and Katy start by sharing light-hearted moments, including stories about Pancake Day and how Debbie met her husband. Katy talks about her recent experiences with tennis and netball while managing ongoing foot pain despite using orthotics.

The conversation explores who inspires them, a common theme is those who are living with long term diseases and drawing inspiration from athletes like Caroline Wozniacki and actor Kathleen Turner. They go on to compare chronic illness management to the mental and physical strength required in professional sports. They also explore how the 1% trend, by doing 1% more to make yourself better each day, can be helpful for people living with IA, but recognise that sometimes you can feel like going backwards.

They discuss the pressures of the “perfect body” shown through social media, and they encourage realistic expectations. They highlight the value of self-acceptance and learning to appreciate your body, especially as having inflammatory arthritis has already put your body through a lot. The episode concludes with reflections on parenting with inflammatory arthritis and fostering resilience in the next generation.

Key Topics Discussed:

✅ Managing Inflammatory Arthritis – The impact on mobility, ongoing pain, and frustrations with medical assessments.
✅ Finding Inspiration in Athletes – Lessons from sports stars like , Andre Agassi, Rafael Nadal and Caroline Wozniacki on perseverance.
✅ The Power of Small Changes: 1% – How making incremental improvements can lead to long-term benefits.
✅ Balancing Life & Chronic Illness – Navigating social expectations, personal goals, and physical limitations.
✅ Parenting & Support Networks – The importance of community and encouraging resilience in children.

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Disclaimer: 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.

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