Episode 24 – Intermission

Introduction:

Debbie: Hello and welcome to Inflammatory with Debbie

Katy: and Katy.

Debbie: Any more heat traumas Katy?

Katy: Well yes, on Thursday after school, my son was in after school club, I got a text from the lady that runs it, and she just mentioned that my son wasn’t feeling very well so I said oh I’ll be there in 30 minutes. I was working from home, and you know when you’re like oh god I’ve got to go pick him up again early because I think if we looked through the show notes of all the previous episodes, I’m really intrigued of how many times I’ve talked about him being sick. Anyway,

Debbie: he has been ill quite a bit, bless him.

Katy: He has and so I got, he’d gone to school on his bike so I got on my bike, rode to pick him up then I felt absolutely awful because he was in the after school club lying on the floor on a little cushion with a cold compress on him to try and cool him down and he was lying in front of the fan and you know when you go oh god why didn’t I drive? So then I ended up, he had, I mean we don’t live that far from the school, like it’s a 10-15 minute walk, a five minute ride on the bike and so I ended up having to push my bike and his bike home and he was walking extremely slowly but also we can’t fit his bike in the car so whatever, I’d have done wouldn’t have, you know, wouldn’t have really worked but like when you’ve got dodgy wrists because I was talking last week about my dodgy wrists.

Debbie: Yes, going to ask about your wrists, yes.

Katy: Absolutely fucking traumatic, like child ill, whinging, me having to push two bikes, hold the school bag, hold two helmets, like I was going through the park, I had many, many rests where I just slammed the bikes on the floor in my head was going what am I doing? Anyway, he threw up Thursday night.

Debbie: Oh no.

Katy: So it was, we missed the school fair, missed the family barbecue, not really bothered about the in-law’s barbecue, hope they don’t listen. So sometimes your child being a little bit sick is great because it forced us to just sort of completely chill out at the weekend and actually Saturday and Sunday weren’t quite as hot, were they? So it was, you know, I mean, just chilled in the garden, got the paddling pool out, lovely.

Debbie: Nice. So do you think it was more heat stroke than anything else?

Katy: It’s really hard because I think there are a couple of sickness bugs going around at the moment. Oh really? But I don’t think he was sickness buggy because he wasn’t like complaining about tummy ache or that kind of thing. So, I think it was like, I keep seeing loads of stuff on the NHS and Instagram about the difference between heat stroke and heat exhaustion. So, it was probably heat exhaustion, not heat stroke because there is a massive difference. But yeah, yeah, he was just, you know, when they’re just a bit tired, a bit sad. Very cute though. He’s got absolutely mental hair today. We really wanted to get him a haircut. Obviously at the weekend we didn’t go anywhere. So, he like, he had his school assembly this morning, which was very cute.

Debbie: Oh, I do miss them.

Katy: Yeah, he was so cute, but he looked like an absolute lunatic because he started wearing headbands, you know.

Debbie: I just think David Beckham from what, the 90s?

Katy: Yeah, yeah. And then his hair was like sticking up and me and my husband were just sat sort of watching the assembly. He’d got half his shirt tucked in and tucked out.

Debbie: Nice, nice.

Katy: He just, anyway, he’s better. So that’s all good.

Debbie: And then how are your wrists?

Katy: I think they’re actually, maybe because I was distracted. I do sometimes think distraction helps because I wasn’t so like, not saying pity partying myself, but I do sometimes when things hurt, you kind of get into a bit of a like, oh God, it’s hurting again. What am I not be able to do for the next week? So, I think having the distraction of having to sort of make sure he’s feeling better, that kind of thing. I actually feel like my wrists aren’t too bad this week now, but also the weather has changed.

Debbie: I was going to say the weather has changed. It has been slightly cooler because I was in Edinburgh last week. I left ridiculously early in the morning, but even in the morning when I left, it was about 24 degrees. And when I got to Edinburgh, it was only about 16 degrees.

Katy: Really? That big a difference?

Debbie: Yeah. But then when I got back in the evening on Wednesday, I landed about 11 o’clock. I got off the plane, it was the humidity. It felt like I stepped off into Spain, not Luton. Yeah, that’s obviously a slight difference.

Katy: Well, I feel like we’ve got an air con unit in our bedroom.

Debbie:  Nice.

Katy: In the morning when I step out of the bedroom into the rest of the house, I’ve been feeling like I’m stepping off the plane on holiday.

So, you know, just going to take that and imagine there’s a beach at the bottom of my garden.

Debbie: Yeah, I must admit, I wish there was. But yes, it was a slight difference. Because I had to be awake so early last week, I didn’t take my painkiller, which is also like a sedative at night for my fibromyalgia.

Katy: Right.

Debbie: And I did then have a bit of an issue trying to get repeat prescription from my GP last week. I did send you a voice note, I was ranting away. Oh yes, you messaged about this. Yeah. And it’s mainly the shared care and actually what’s in the letters. But I did actually then go to a workshop last night about patient letters and should they be addressed to the patient or the GP. And actually, but then it’s what is the purpose of them? And I kind of think they should be there because it should help empower the patient to understand their health condition and their journey that they’re going through. But anyway, so I haven’t been taking my painkillers. And I must admit my hands this morning, I’ve woken up and my fingers, again, that I think I’ve mentioned before, they do look a bit like King Charles’s sausage fingers. And I just forgot how hard it is just to move them and the pain. But then I’m thinking this could now be the fibromyalgia, not my inflammatory arthritis. I’m trying to learn the difference between them. Just so I know, because I am taking my other medications as well. So, this could just be a fibromyalgia flare that I’m just going through and with the heat and everything as well. It’s a learning curve for me at the moment, learning something new. So yeah, we’ll just see how we get on. But I know you did so much on Insta last week, Instagram. Yeah. About the comments about the weather, because I see we mentioned it on the pod as well. What were people saying?

Katy: Yeah, so we had loads of stuff about people talking about how the weather affects them. And I’m just trying to actually find the notes that people sent through, because we had loads and loads of engagement, which was absolutely brilliant.

Debbie: Yeah, I saw the phone just pinging all the time. I’ll leave that to Katy.

Katy: It was really, really great to see people getting so involved and kind of telling us. So, a lot of people, so somebody mentioned that mostly if there’s a change in pressure, that’s when they feel it, not just the sort of heat alone. Quite a lot of people found that they get more sort of fatigued when there’s a lot of heat, which I guess is sort of similar for everyone. I mean, my son might be a good showcase of that. And then a few people sort of mentioned that they get sort of swollen feet, and really swollen hands. There was another comment around more pain and fatigue. And then a few people kind of said, I asked, what do you do to try and alleviate the problems? And sort of, if you’ve got swollen feet, kind of elevating, using cold compresses, that kind of stuff. So, it’s quite interesting. It seems like the weather, just from that very small snippet of people, is affecting how people feel on a sort of day-to-day basis. And I guess it’s just, should we be kind of ourselves pre-planning based on, I mean, the weather forecast isn’t always great, is it? Who knew? I didn’t know it was going to rain on Saturday where I live.

And then suddenly like the heavens opened.

Debbie: I think we had a load of washing out and it was like, I was like, I need to bring the washing, it started to rain. But then as soon as I brought it in, it stopped. So, it is very hard at the moment. But I was thinking back because it is my wedding anniversary coming up this week, our 20th wedding anniversary. And then it was very hot because the weekend before my wedding, I decided to do all my gardening and I got completely sunburnt on my back. I even had little blisters on my back just because it was too. So yes, it was very hot 20 years ago. And then even on the wedding day, it was really hot as well. And I was on the verge of passing out and people had just had to keep giving me water because it was so hot. So, but yeah, I do think for me, especially heat does affect me. I think I relate to most things people are saying that the fatigue and you just do feel exhaustion, but also because it’s harder to sleep at night, unless you’re Katy, you have air con, which I don’t, I do in the office, garden office, but not in my house. Because you don’t sleep that well. And then obviously we know that sleep is really does affect us, our condition and heat. I did read somewhere that the heat actually makes us hold onto more of our water, so we don’t sweat it out. So that water retention can also obviously not help with the inflammation.

Katy: So, I would have thought if you’re hot, you sweat. You do.

Debbie: But then I think it’s just sometimes how I read it somewhere, I’ll try to dig it out. But it was saying that because if we’re not then rehydrating quickly enough, it will just be retention.

Katy: Oh, so it’s holding it to kind of keep you hydrated. I see.

Debbie: Yeah. So obviously, I think it has shown that weather can affect and obviously we’re British and that’s what we always talk about as well. So, it just has to go hand in hand really, doesn’t it? And just coming to something I wanted to mention today, we have made the pragmatic decision to pause Inflammatory! over the summer break. We are going to be doing lots of stuff behind the scenes and also it gives you a chance to catch up on any of the episodes that you may have missed, not got around to listening to. They are all on our website and obviously all on Spotify, Apple and Amazon as well. And Katy, I’ve been listening back to some of our episodes and actually I think we need a pat on the back. We’ve done so many, and we’ve covered a lot of information. But what has been one of your favourites?

Katy: So, I mean, there’s a lot.

Debbie: There is a lot.

Katy: I’ve been super impressed of, you know, we’ve managed to cover so many sort of topics, whether it’s been during the Q&As, whether it’s been the other episodes. But I do think the one I’m most proud of is when we talked about mental health because that’s something I really do struggle to speak about sort of openly. And I think it’s really made me kind of realise, you know, sometimes being vulnerable is such a positive because it just makes other people feel more comfortable in maybe the feelings that they’re sitting in. And hearing your story, I know we’ve never really had that conversation before. So, for me, that’s the one I was really pleased with of how it was produced and how it kind of came out and how we delivered those messages, because it is tricky to talk about that sort of thing. And it’s not something I would, and I probably should, but it’s not something I would ever really, like if I was, I don’t know, in the pub or going for a coffee with a friend, I’d never kind of talk about it.

Debbie: Yeah, I agree. Actually, when I was in Edinburgh last week, I am trustee of the Teapot Trust, which is an art therapy charity for children, and they’ve actually listened to that mental health episode and saying how insightful it was. And even a psychologist in Bristol has listened as well. And it has just given that insight into all aspects of our life, especially even though it is an invisible disease, that part is even more invisible. But it is how it really impacts our mental health and emotional health. But I was trying to explain to someone last week that when you kind of go and do speaking at an event, you know, you’re quite anxious. And that is kind of obviously a mental side, mental condition. Yeah. But you have physical attributes to it, you shake, you know, you go, oh, not sure what I’m doing. It does have physical attributes. Yeah. But flip it on the other side, if you have a physical condition, it will impact on your mental health as well. It isn’t just always black and white. It is such blurred lines between them both. And people do have to look after their mental health as well. And I think with especially inflammatory arthritis, because it is that chronic and it fluctuates, and you never know when you’re going to flare. You can try to control as much as you like with your diet and your physical activity and everything. But sometimes and again, this is why we don’t know what causes it. It is. And what I do like, I do love that analogy of that sound system. It is just being turned up for unknown reasons. And that’s what really then impacts on us is that ability not to be able to plan very well because you don’t like letting people down. And it’s that side that people don’t they don’t see, and they don’t understand. So, I’m hoping that that episode really did. And it did resonate with so many people. We had amazing feedback come through. And just looking back at all of them, we’ve had feedback so regularly come through that people have just found us listening to the podcast and the charity and what we’re trying to do. And it’s shown that there is that need. And people do need to hear from people that get it and understand it. Because as much as you’re trying to explain, even I’ve been with my husband coming up to 20 years, he doesn’t fully get it. And unless you’ve been in that situation, you generally don’t. You can explain it to your heart’s content. But unless you’ve been there, it’s very hard to walk in people’s shoes.

Katy: Yeah. And I guess this is why as well, just to be clear, that this isn’t kind of a stop of the podcast, we will be coming back in September. It’s just a little break. So that we can, you know, regroup, think about sort of future episodes, look at future guests, find more funding. And that’s sort of a big thing that we need to do throughout the summer. And so, we can go on lovely holidays with our families.

Debbie: Yes, I do think we deserve. Because I was thinking back, it was this time, sort of last year that we kind of got more in contact, Katy, about, you know, let’s start, let’s start something new. Let’s do this. And so it was then just going through all the things for the Charity Commission, putting business plans in place and actually doing all the research to find out what, where the need is. And I think we have found our niche, because we are trying to do, yes, the topics that we talk about can be quite, quite negative, but we always try to put that positive warm spin on everything. We want to be just that realistic.

We know that it’s not always going to be a bed of roses. We know that. But it’s how we get through that, hoping that people can see that if people can do that, oh my gosh, I can do that as well. She can do it. I can do it. Yeah, you know, mentality, because I think that’s what we try to do. But when you go on holiday, Katy, do you pack your inflammatory arthritis with you? Is it like an unwelcome extra guest?

Katy: I try to forget about it, but occasionally it will rear its little ugly head. It does, doesn’t it? You know, it’s like a little bloody devil, isn’t it? On your shoulder.

Debbie: It is.

Katy: I think we talked about this in one of the other episodes, like it’s always kind of gnawing at your ear going, yes, I’m here. I’m here. I’m going to make you feel horrendous.

Debbie: Yeah, completely. Yes, I’m with that. Yes, it is.

And yeah, I must admit for me, it is always there. Even like today, as I say, you know, I woke up and it’s just like my hands and all of that. And also, with the heat and everything as well. Again, we’ve mentioned that today that it can have impact as well. So it is that unwelcome guest, but hopefully you can have majority of time having time to relax. What is your ideal holiday?

Katy: Me? Oh, great question. So, I do think I like a beach. My husband hates sand. So, we generally have differences.

Debbie: two holidays?

Katy: So, I like a beach, going and swimming in the sea. But I also prefer a holiday where you can travel around and see different places. My sort of ideal idea of not hell, because it is nice, but I don’t really enjoy holidays where you’re just sat by a pool. What we tend to do on holiday is wherever we are, we’ll go out sort of first thing, go and explore, and then spend the afternoon by the pool or the beach, depending on who wins. Who wins the most because I’m always like, we’ve got to go to the beach because we don’t go to the beach like here. And there’s mainly where I live. It’s mainly kind of pebbled beaches. So, I like lots of activities and I get bored if I’m stuck in the same place. So, I do quite like city breaks, but obviously a city break doesn’t have a beach generally, it depends on the city. And they’re a bit rubbish for kids. So yeah, my son, as long as he’s got a pool or the sea, he’s happy as Larry.

Debbie: Yes. Yeah. For the last couple of years, I’ve done beach holidays. But before that, we couldn’t afford to go abroad. So, we never did. But we did climb, 10 years ago, actually, this summer, we climbed Mount Snowdon. My children were six and eight.

Katy: That’s bloody impressive. It was.

Debbie: I didn’t realise how impressive it was looking back because it’s quite high. But we had to slow, I think, my eldest daughter down because she was just off on one. It’s just like, no, mum and dad can’t keep up with that pace. We have to pace each other here.

And my youngest just kept talking the whole time. And we were walking past people with proper hiking gear, even though my husband, bless him, he is like a Bear Grylls. Well, I’m Bear Grylls, but I like the five-star hotel like Bear Grylls does.

Katy: Okay. So, my husband would probably hike up Snowdon when he was flip-flops.

Debbie: Yeah, no, we had everything, contingency plan to the, yes, yes, health and safety, risk planning to the max with that one. But it was lovely when we walked up, we were in sunshine. But when we got to the top, we’re actually in a cloud and the temperature dropped so much. And actually, I must give my husband a bit of credit here. Because my youngest was quite small, we had to get everything on her. And he packed like a load of pair of spare gloves, spare socks, and we just whacked everything on her because she’s quite tiny. And she just got cold so, so quickly. So, we just wanted to make sure that she didn’t…

Katy: Again, very different. My husband would probably… We can get the train up. He wouldn’t pack water. He wouldn’t pack anything extra. You just go in what you’ve got. And he’d be like, why are you carrying that big bottle of water?

Debbie: Yes, we needed lots of water.

Katy: What he would quite often do, because I quite like climbing up things, because then you get a lovely viewpoint. We’ll get halfway up something and he’ll go, well, I can see most of it. Why bother going all the way to the top? Wow.

Debbie: Yes, my opposite, we have to get to the top. That’s the whole point. So yes, we’ve done that. We’ve done the Brecon Beacons as well. We used to go to Devon, North Devon quite a lot. And my kids have now got into surfing and that, which is great. But yeah, for the last couple of years, I’ve then gone abroad. People know that I have a dog, and we never get anyone to look after the dog. So, the husband stays at home, and I take the kids abroad. It’s great. But they do. And especially my daughters have just done their A-levels and have just finished their GCSEs. It has been a very stressful household. And yeah, and so I’m going to be taking my youngest because my eldest has gone travelling. I think I’ve mentioned that, that she’s going travelling and…

Katy: When’s she off?

Debbie: Two weeks. No, a week on Saturday. What day is it? Oh, wow.

Katy: That’s so soon.

Debbie: And I’ve realised she’s got an appointment next week with her rheumatology team, hopefully to know kind of what will happen if she flares when she’s away. Because I’ve mentioned she can’t take her biologics because she can’t carry a fridge with her. So yeah, we’ll just see how that goes. I forgot that’s next week as well. Yeah, so I’ve got to book a holiday with my youngest and I think she’s looking at hotels. I think she just wants to chill.

I think GCSEs, she had about 20 exams to sit, and they covered about five, six weeks. And so, it has been very stressful. So, she does deserve a holiday. And she actually is quite British. So, she’s kind of a bit… My husband is part Scottish. I love the Scots. But she’s quite pale skinned. So, she does burn quite easily. So generally, in the afternoon, she’ll go and sit in the air con room, and I will just sit by the pool and read. So yeah, I have missed reading. And that’s just what it’s for me. I just want to just relax. And that’s what I just want to do on a holiday. I don’t want to go anywhere. I’m happy. I’m a bit older than you as well, Katy. I just think by this time of life, I just need just to… You know, like in the Matrix, if you could plug my brain in, that’s just what I want. Just something to download everything and just completely forget everything and just relax for a little bit.

Katy: I’ll be taking my gym gear. So, we’re going on a cruise and on the top deck, you can go for a run on the top deck. So, on the days at sea, I’ll get really like itchy. So, I’m just going to go running on the top deck or go in the gym.

Debbie: Oh, okay.

Katy: But when we went last time, my son, like, oh, he was such a clingy little monster. Like, obviously, he was quite big. He was three years younger, and he wouldn’t let me go for a run. So, I got like really aggy.

Debbie: Wow. Yeah, I must admit, I’m not sure. My daughter’s just been on a cruise. I don’t know if I could do… I get motion sickness. I don’t know.

Katy: I wasn’t sure about a cruise, but I think don’t knock it until you’ve tried it. Because the beauty is with my son’s seven, with a child, you can see loads of different places without having to have all the faff of packing up a bag, getting on a train or getting on a coach and going somewhere else. I like holidays where I only spend like two or three days in one location and then you get transport, and you go somewhere else. So, like my honeymoon was probably my favourite holiday when we went to Vietnam and we kind of just spent two or three days in different locations around Vietnam. It is quite tiring because you’ve got, you know, you’re just living out of a backpack, aren’t you, for the time. But that’s my favourite sort of thing when you go and see different stuff. I hate being stuck It sounds bonkers because I’m going to go and be stuck on a boat. But that boat goes and stops at different ports and then you get off and you see all the places. But this one’s a bit longer than the last one we went on. So, there are a couple of days where you don’t stop anywhere, and you are just at sea. But as long as I’ve got my running kit and gym gear, I can go in the gym, and I can go for a run on the top deck. So, look out for my Strava in the middle of the ocean. Yeah.

Debbie: Interesting. Okay. That’s something I wouldn’t do. I get seasick and that. So, by the way, there’s lots to look forward to over the summer, especially seeing Katy running on a top deck on a cruise. But as I said, we are going to be doing so much work behind the scenes. You know, this gives us time to really kind of knuckle down, get applications into grants, trusts, funding. And also, we want to get some posters designed as well about the charity and the podcast. So please, if you would like some, once they’re done, keep an eye out on our newsletters and social media. And if you’d like to take them to your hospitals, healthcare, libraries, wherever, please do let us know and we can send you some as well. We do want now to try and get awareness of the charity out there as well. So please do sign up to our newsletter. You go to our website as inflammatoryarthritis.org. Please do follow us on social media. Again, we’ll be doing some, probably some unusual content maybe, Katy, over the summer. We shall see. But please do follow us. We’re on Facebook, Instagram, LinkedIn, and Blue Sky. And until we are back, it is, it’s not goodbye, it is see you soon.

Katy: Goodbye.

In this heartfelt episode, Debbie and Katy reflect on recent personal experiences, listener feedback, and plans for the future as they wrap up the podcast season for a short summer break.

Topics Discussed:

• Coping with Heat & Chronic Illness
  Katy shares a stressful experience with her son falling ill from the heat, leading to missed plans and increased physical symptoms. Both hosts reflect on how extreme weather and heat exacerbate chronic conditions like inflammatory arthritis and fibromyalgia, including the emotional and physical toll. They also cover community responses from Instagram on weather-related symptom changes and coping strategies.
• Symptom Management & Support
  Katy describes how distraction helped her cope with wrist pain, while Debbie talks about medication access issues and the challenge of identifying whether symptoms stem from arthritis, fibromyalgia, or both.
• Mental Health & Chronic Conditions
  The hosts revisit the strong listener response to their mental health-focused episode, Episode 5 You’re not alone, highlighting the blurred lines between physical and emotional well-being. They emphasise how living with a chronic illness often affects mental health.
• Summer Break & Future Plans
  Debbie and Katy announce a summer pause for the podcast to recharge, plan future episodes, secure funding, and create outreach materials. They reflect on how much the podcast and charity has grown since launch and the impact it’s had on their community.
• Holiday Plans & Chronic Illness Realities
  The hosts share their personal holiday preferences and how inflammatory arthritis still “tags along,” affecting travel plans and energy levels. From city breaks to cruises, they discuss balancing relaxation with the unpredictability of symptoms.
• Spreading Awareness
  They invite listeners to help raise awareness by sharing posters and materials about the podcast and charity in their local communities, hospitals, and libraries.

Stay Connected:
Follow the team on Facebook, Instagram, LinkedIn, and Blue Sky. Visit inflammatoryarthritis.org for updates, newsletters, and ways to support the cause.

Until Next Time:
This isn’t goodbye, just a “see you soon.” The podcast will return in September with new stories, guests, and conversations to continue supporting those living with inflammatory arthritis.

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. For more information, head to https://inflammatoryarthritis.org/