Episode 41 – My Pace Not Yours – 1 year of IAUK

Debbie: Hello and welcome to Inflammatory! with Debbie.

Katy: And Katy

Debbie: Happy New Year Katy how was Christmas on New Year?

Katy: Happy New Year. mean, I love saying that this week. Some people think after like the first couple of days, Happy New Year is done. I think it’s when you first see somebody.

Debbie: I do.

Katy: I mean, I know we saw each other Monday, but you know, still Happy New Year.

Debbie: Well exactly, that was for something different.

Katy: Christmas and New Year was really lovely. I mean, more busy than I think I probably would have liked. We had a Christmas day at my in-laws. and then we went up to see my parents in South Yorkshire from Boxing Day till, just for a couple of days. and then actually it was once we got home, that was when we really chilled out. and then the weather, it snowed in the home counties and other places in, in the UK over the last few days. So, that’s also meant life has kind of shut down a little bit, which is sometimes good. How was yours?

Debbie: It was I think the opposite. We didn’t really do very much, mainly because I was ill, which seems to be usual. But I don’t know what it was. But the run up before Christmas just seemed to be so busy, just so much going on like charity side and just research I seem to be just constantly on my computer and dealing with emails until quite late. But thankfully I could eat Christmas dinner because it’s been a few years where I haven’t, I’ve cooked all the dinner and I haven’t been able to taste any of it, but actually it was beautiful this year. So, in that respect, it is what it is really. But my daughters were working quite a lot because they work in a local pub. So, they were then working after, they have Christmas day off, which is lovely. Everyone does, they shut the pub at Christmas day. But then Boxing Day and after that they were working quite a lot and it was my eldest daughter’s birthday on New Year’s Eve and thankfully they all decided to go down the pub and not have loads of people around my house, which is lovely.

Katy: Yes, because I remember last year, I think everyone came around your house, didn’t they?

Debbie: Yes, it was her 18th last year so yes we did have a big sort of house party and thankfully because mainly my house is surrounded by boxes and just so much stuff at the moment that I just thought I didn’t really need and not feeling 100 % either I just thought no just so I was taxi driver on New Year’s Eve so but it was nice.

Katy : Okay. Oh, I didn’t drink New Year’s Eve. I was household cab driver because we just went to a friend’s house. It was the first time my son stayed up till midnight. My husband tried to say, let’s go home at half past 10. And I said, no, look, he’s wide awake. Let’s let him stay up. We were just around somebody’s house. So, we played darts pretty much the whole night. And I really got into the world championships at Alley Pally watching it on the TV over Christmas. I’ve always, yeah, because I’ve always been really like, well, darts isn’t the sport, it’s rubbish. But after my win at my work Christmas party,

Debbie: You are semi-pro now!

Katy: I’m semi-pro, I mean, I love it. I’ve like really got into it. And then I was watching the darts on the TV and my God, I really, really got into it. And I was very happy that Littler won rather than, the other bloke I thought was brilliant as well. Cause it was a final with an 18 year old and a 24 year old. So, you always think of darts as being a bit old blokey. It is, but the youngsters are really coming through. And then my son even started watching on YouTube, like the kids world starts championship. Darts has featured a lot in our house and we’re trying to work out where we could put a dartboard because our house isn’t that big that then wouldn’t mean like all of our walls are an absolute state.

Debbie: Wow, to let you know, when I think as presents to our groomsmen, I think that’s what they were called at our wedding, I can’t remember so long ago, but we actually gave them a magnetic dart board and I actually found one that I bought for my husband as well. So you can get magnetic ones that make us little slight dent, but not as a pinprick as much as a dart. So to get him it if you wanted to. Is he competitive? Because I know you are.

Katy: He’s competitive to a point and we played a brilliant game. We played around the world. So, you do like one, two, three, four, five, six, seven, eight, nine, 10, 11, 12, up to 20. And then you have to hit the bullseye. Oh my God. So me and my son, I guess the average age of our team will have been the lowest. Everybody played with a kid basically, but my son was the youngest child there. We were dreadful at getting it around the world, but everyone was so bad at hitting the bullseye that we managed to catch up from miles behind. And then, my God, it was at least half an hour once we’d got to hit in the bullseye before anyone actually won the end. We were like, please someone just win. So I’m competitive, but then there becomes a point where we’re all so bad. It’s like, please someone just win so we can end this.

Debbie: Bless, but you did hear and you did send me a message which confused me because I think I replied at like four in the morning when I couldn’t sleep one time.

Katy: You did reply very early in the morning.

Debbie: What you misheard them because one of the dance player has dartitis. That’s nothing to do with inflammatory arthritis.

Katy: I misheard it and I started Googling whilst I was watching it. Is this the form of inflammatory arthritis I’ve never heard of? He could be a great guest if it is.

Debbie: Because I misread your message I was googling it again it’s not I don’t know what she’s going on about but it is I was laughing at you and then me but I didn’t realize what dartitis is it’s,  a neurological issue where they can’t release the dart and obviously being a professional darts player that is what you have to do so it is that is I think it’s showing that that mental side really impact sports and I think obviously everyday life as well but for sports people as well that can be quite hard and how you get around it all.

Katy: Yeah And darts actually from my very short stint of being really into it. It’s like mentally, is all about if you meant, if in my head I was going, right, I’m going to get it in, I’m going to get it into that number. And then you quite more often than not, if you really focus on it, you do. Anyway, let’s move on.

Debbie : Yes, not only is it a new year, we are also one year old, Katy. Can you believe it?

Katy: It’s gone so, so fast, hasn’t it? I think we’ve talked about this before. It’s gone so fast, but it’s also gone quite slow because it’s that getting into everything that we’re looking to do and planning the year, but it has gone super-fast.

Debbie: Yeah, well, I must admit it was a year ago. I probably around the time we’re recording it slightly a couple of days before the Friday. I think I was on the radio around this time last year, promoting the charity and the podcast and everything.

Katy: You were, yes.

Debbie: So, I can’t believe that was a year ago. So yes, it has that does seem to have gone very, very quick. And I think a few things, obviously, you know, running any business, any charity, there’s ups and downs with it all. And I think of us do sometimes the downs were like, oh, my gosh, this is the is it seems to be quite slow. But actually, it has gone really fast and what we achieved though has been absolutely amazing. I’m just so proud of you, all our trustees and how far we’ve got and actually more people seem to be getting behind us every single day now. It’s great.

Katy: No, it’s absolutely unbelievable. And Debbie, you’ve got to take a lot of credit because the amount of hours and time you’re spending, making everything day to day work, it’s absolutely incredible. So thank you.

Debbie: Oh, thank you. Yes, I do. Because I don’t have a full time job. So yes, this is what I do. I’m just so passionate about helping people with IA and people to hear from people that get it. It is just so important but yes, it’s been great. And I’m actually now putting together our board meetings for the next year and having a strategy day, which we’re actually looking forward to, which would be great. And just other projects that we’ve got planned for this year.

But our theme this January is, as we mentioned in the last previous ones, is my pace, not yours. And looking through, I don’t know, Katy, how you felt, but looking through LinkedIn and social media this year, it does seem that the pressure to do like ridiculous New Year’s resolutions it seems to be a thing of the past. It is. Putting yourself first, being your priority, that seems to be coming across a lot more.

Katy: Yep. Absolutely. And not just in the sort of inflammatory arthritis or healthcare space. I’ve really seen a shift. So, I follow a lot of influences in the fitness world. And actually, there’s quite a few that are saying, don’t put all the pressure on yourself in January. January doesn’t mean you’ve got to be a new person. It doesn’t mean you’ve got to start a new diet. It doesn’t mean you’ve got to start a new crazy fitness regime because actually and a bit like what you’ve said, Debbie, December can be so rushed and hectic and so much going on that actually January, the weather’s cold in England, the days are shorter. So, you should be, chilling out and taking that time for yourself and resting because, January can be a really nice time just to snuggle up on the sofa and do nothing.

Debbie: Completely agree. it does seem, think it would be again, I think this is due to the amount of pressure that you put on at Christmas and how you, you become so indulgent and you, I didn’t, I, because being ill, I, and I don’t eat all the bad things anyway. And I don’t think people generally are nowadays. And so, there’s not that thing of like, oh my gosh, I put on so much weight every Christmas, I need to really, you know, shift it all and let’s do a ridiculous diet. Because by February, and I think there’s even research has shown that even by this, the end this week, early next week, people have stopped doing their New Year’s resolutions because they’re just unsustainable. So, and I think that really then goes into your mental health as well, because it’s like, my God, if I can’t do this, I’ve failed. Well, you haven’t, you’ve just given yourself an unrealistic goal. So why do that in the first place?

Katy: I agree. I’ve never been a fan. And I think I mentioned this on the previous episode. I’ve never been a fan of New Year’s resolutions. I might set in my mind like a couple of intentions, but it’s not something that’s very specific that you’ve got to do. I don’t know, eat this food, go on smoothie diets and all those kinds of crazy things. And I have seen a couple of people still doing those kinds of things. And I guess it’s each to their own if you feel that’s going to help you.

Debbie: Yeah, I think some people sometimes may need that. I think it’s more like a shock therapy to actually say, I am going to properly detox and do this. I personally don’t think they are sustainable for a long time. think you then if it if your target is then to lose weight, I think you then yes, you lose a little bit, but then you end up putting it back on because it’s not it’s just not sustainable and it doesn’t work in your everyday life. Because I think also, again, that life is so busy and so hectic anyway, especially when you add in a chronic fluctuating disease like inflammatory arthritis, that you know there are some times I’ve had like a fitness plan I’m to go for run this day, this day, this day, I’ll go to the gym but actually when my joints are not working that day it’s like okay so then it then feels like I’ve failed what’s the whole point? Actually, if it was just going back to our 1 % episode which was one of our favourite last year. And I think that is really coming out a lot more because that’s what people are saying. Just do incremental changes. They last so much longer. And then you actually start feeling the benefits as well.

Katy: And then when you have an off day or a day because you physically can’t do anything because you’re flaring or you’ve been hit with a lot of fatigue, then it doesn’t feel like such of a problem if you’ve not set an unrealistic goal in the first place. If you’re thinking, I just want to move a little bit more, don’t be too specific about what that little bit more is. I think everything’s about being gentle and kind to yourself, which I can really get on board with.

Debbie: Well, yeah, because I was actually reading and again, I sent you loads of WhatsApps about this as well. There has been like research articles about Jomo and FOMO. Do you know what they are?

Katy: So, I am a huge person that suffers with FOMO incredibly a lot.

Debbie: Shall we just explain what FOMO is?

Katy: Yeah, so FOMO is fear of missing out and I cannot stand missing out on anything that I think looks fun. But I’ve been trying to get on board with Jomo, which is joy of missing out. My husband has been a fan of Jomo for pretty much the whole time I’ve known him. So he loves missing out. His favourite thing to do is just say, no, no, I don’t want to go. I don’t know if this would be quite interesting to know actually is, sometimes I think women can be worse for saying yes when they actually don’t want to do something because you don’t want to offend people. So I can quite often say, oh yeah, I’ll come to that because I’m like, oh, you’ve invited me. I feel really special. I want to go. But actually, in my head, I probably don’t want to go sometimes even. then I then if I don’t go, I’m like, oh, am I missing out on like a really good time? Probably not. It’s probably rubbish. It’s probably boring.

Debbie: Yeah!

Katy: So, there’s a few things I was invited. So, it’s been snowing. So, our tennis courts have been shut. then on Friday, Saturday and Sunday, I got invites to go for drinks at different places because we couldn’t play tennis. People were like, do you want to just come down to the club and have a drink? Do you want to come around to my house and have a drink? I said no to all of them. And I didn’t like it. But I also didn’t want to go walking in the slippery ice outside and end up at nighttime falling on my backside and hurting myself. It’s not worth it. So I took the Jomo approach of no, I’m just going to stay at home and watch TV. And I feel better for it.

Debbie: Well, there you go. Because I’d heard of FOMO, but I’d never heard of JOMO. And I was reading this article by the psychologist about it all. Again, I think it’s flipping that side of, know, January isn’t all about stopping yourself from eating, drinking, doing all these things that you shouldn’t be doing in the first place. But if you do them in moderation, they’re all fine. And it is just flipping it to say, actually, no, give yourself that compassion. you don’t have to be out there doing things and just enjoy not doing all those things that you felt that, should I go to, should I not? And it is probably the, the FOMO that would make you go, but would you enjoy it? Would you not? And actually it’s just putting yourself first, especially when you’re living with IA because I actually going to ask you whether the cold affects your fatigue as well because your body’s working that much more to keep it warm unless you’re very lucky, you kind of live in a sauna. But I just feel very fatigued. It comes at like eight o’clock at night. like, I could go to bed now.

Katy: So, I do think I’ve been a lot more tired in the evenings than I would be normally. So yeah, cause I think heat and cold will equally kind of affect me. But I have felt like my wrists, and I had a weird thing in my ankle this morning where it just sort of went a bit weird. the cold definitely affects me and I just have to be a little bit more careful and I do think it probably does, if I really think about it, it does slightly affect my fatigue levels. so you’ve definitely, yeah, you’ve definitely just got to start having like, you know, nice, cozy, hot food.

Debbie: Yes, yes. And I don’t know if you saw last night, there was this program called What Not To Eat.

Katy: I’ve seen loads of ads for it. Yeah.

Debbie: And it’s all about the, yeah, about the ultra-processed food and one of them, and then they did took blood from the, from this couple and one of them had a high inflammatory marker. So, but then they did eat, it was extreme. but it’s just, again, putting yourself first and actually looking after your body because I was you know I was thinking about this and actually your body’s with you all life you know you have this no one else is going to be with you from the moment you were born to like the moment you’re not around anymore so you have to look after yourself and it is tough and it especially when you think you have family, you have a career, your life I think at the moment is just so much and obviously with the news as depressing as that is there’s just so much going on that I think you just need to take yourself out of that situation and just go, right, what is good for me? if you feel like you just want to be not, I hate again the terms good food and bad food, but if you just want a bit of that comfort food, have it. It’s not gonna harm you. But if you obviously, have it every second of every day, yes it would. But it is, and it’s just that moderation sort of side

Katy: Yes, it’s like anything, isn’t it? Yeah.

Debbie: Just thinking ahead, Katy, and how busy, the charity is going to be this year. But also, we did an event on Tuesday for a company talking about our podcast. How’d you think it went?

Katy: Yeah. I mean, it was really difficult because we weren’t there in person. So, everyone was there in person. We were on screen. So, I did find it very hard. I mean, it’s no different to doing this because we can’t see the people that are listening to us. But knowing that people are in the room and you couldn’t gauge any response, I found it quite hard because you kind of go off on tangents. But you know, we’ve had some brilliant feedback, haven’t we, so far?

Debbie: We’ve had amazing feedback and yeah, I must admit I was glad I could see you on the screen and not myself which made it so much easier.

Katy: Yes. Yeah, because I was just for everyone listening, I was projected. And as soon as I saw it, my heart went, my God, that’s me.

Debbie: I know I saw your face. I was like, so good. Yeah, being on it was through a team call. But yeah, it was it was great to really talk about what we do and

Katy: Yes, but also sharing some of the stories of our guests was really good because I think that’s the brilliant thing that we can do as a charity and doing this podcast is it’s not just our experience, it’s everybody’s experience across the board.

Debbie: Yeah, and it really does show with our guests that have been absolutely amazing. We’re going to get some really great ones on this year as well. That everyone with IA and their story and their journey are so different. There are obviously commonalities, and I think the main thing is being believed when you go in with your symptoms. But if you are suffering at the moment and something isn’t right and it doesn’t feel right, please go and talk to your team. You know, that is what they’re there for as well.

Katy: Yes.

Debbie: What also came across Katy as well is that you know, we do seem to be very articulate and very good at kind of talking about it. But when we go and speak to our healthcare professionals, I don’t know about you, but I sometimes feel like okay, I feel Yeah, it feels like I’m outside the headteacher’s office and it’s what do we say I want to be good

Katy: I turn into a little mouse. It’s really funny. Yes. Yeah. it’s that because there is, and you actually mentioned it on the talk, we’re taught at school that people of authority, respect them. So, when you’re in a room with a consultant who, you you’re an expert when you know 1 % more than the other person in the room. So, a consultant in terms of medical terms, unless you yourself have been medically trained is going to be the expert on the medical side. But what I always try and tell myself before I go into an appointment is I’m the expert with my condition and how I feel. They don’t know how I feel on a daily basis, but that’s so hard to do when you’re in the room.

Debbie: It is really hard, but I think you’ve summarized that really well that you are the expert of your body. Because I think that’s what I found really hard as a parent of having a child because I’m having to be that voice for her. But actually, it’s her body. I don’t know. She only tells me, you know, what the things I can then say. So, it’s really hard to know how the extreme pain that she’s in and the swelling. Obviously, the swelling is more visible, but everything else, the invisible symptoms of it all is so hard to get that across when you are talking for someone else.

Katy: I’d not really, because I’ve not been in that situation, of course I’ve not thought of that. But that, that is really tough.

Debbie: Yeah, it is and you know for parents your instincts really kick in that something isn’t right

Katy: Yeah, and I think it is just always thinking whether you’re the parent or the patient, you still know more than the consultant on a daily basis of what’s going on.

Debbie: Yeah, as I always say to consultants is you know how to treat it. We know how to live it and it’s.

Katy: I love that.

Debbie: Thank you. it’s having that mutual respect for each other. It’s like they respect you because you’ll actually you’re going through all of this. They’ve read it in a textbook unless they have it. They don’t actually really know what’s going on and how you’re feeling day to day. But this is where you have to really step up and say, look, this isn’t right. This is what you can say can you help me not what you’re going to do about it but how can you help me get through this.

Katy: Yeah. And it is about helping us, to be better in ourselves.

Debbie: Yeah, help us to live our life with these diseases. I think it’s been a great episode already, Katy and I think this is really kicked off 2026 in a fantastic way. And yes, we’re going to be having more events as well. So, if you do want us there to talk about what it’s like living with inflammatory arthritis, please do get in touch and we will be having more online events as well for our community. People want to hear and talk to each other. So please do get in touch with us. We are at inflammatoryarthritis.org and you can sign up to our newsletter. You’ll get regular updates about the podcast, any research opportunities, any events and any other information related to inflammatory arthritis. And again, that’s our website at inflammatoryarthritis.org. Please do rate and follow the podcast from wherever you get your podcasts from. And you can now subscribe to our YouTube channel, search up Inflammatory Arthritis UK.

And we are also on social media. We are on Blue Sky, Facebook, LinkedIn, and Instagram. We are almost at 800 followers on Insta. Please share, follow, like, comment. It would be great if we can really get to over 800 very soon. But anyway, Katy, it’s been absolutely fantastic talking to you, and until next week, it’s goodbye.

Katy: Bye.

In this episode, Debbie and Katy reflect on their holiday experiences, discuss the impact of illness on celebrations, and share their newfound interest in darts. They celebrate the one-year anniversary of their podcast, emphasizing the importance of self-care and the shift from New Year’s resolutions to more sustainable intentions. The conversation also touches on the concepts of FOMO and JOMO, the challenges of managing inflammatory arthritis in winter, the goals for their charity in the coming year and their theme for January #MyPaceNotYours

They finish by talking about confidence in healthcare appointments, the importance of remembering that you are the expert in your own body, and how mutual respect between patients, parents, and clinicians is key.

Topics covered in this episode:

• Christmas, New Year & managing fatigue
• Cold weather, flares & winter symptoms
• One year of Inflammatory Arthritis UK
• Pressure of New Year’s resolutions
• “My pace, not yours”
• Incremental change vs unrealistic goals
• FOMO vs JOMO
• Self-compassion & pacing with IA
• Confidence in healthcare appointments
• Being the expert in your own lived experience
• Advocacy, awareness & sharing IA stories

Get involved

• Visit: inflammatoryarthritis.org
• Sign up to the newsletter for podcast updates, events & research opportunities
• Follow Inflammatory Arthritis UK on BlueSky, Facebook, LinkedIn & Instagram
• Subscribe to our YouTube channel: Inflammatory Arthritis UK
• Please rate, follow & share the podcast, it really helps others find us 💙

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/