Episode 20 – Q&A Five

Intro: It’s time to answer our listeners’ questions again. If my son can stop attacking me with a paper sword, we might give you some of the answers. Inflammatory, with Debbie Wilson and Katy Pieris. Navigating life with inflammatory arthritis.

Debbie: Hello and welcome to our 20th episode of Inflammatory with Debbie

Katy: and Katy.

Debbie: I’m not very good at doing this and I started off last week’s episode asking for money for our appeal. So over to you this time, Katy.

Katy: As you know, we’re a new patient charity and we’ve been running this podcast for 20 weeks, which is fantastic. And we’ve been overwhelmed with the brilliant feedback that we’ve been getting, not just from patients living with inflammatory arthritis like ourselves. We’ve heard stories of how it’s really helping people’s partners and family and friends to understand the disease. And, equally, healthcare professionals. Getting a lot out of our lived experience. And what happens when people with these conditions leave the clinic door? And we’ve got to be completely honest, and we wanted to give everybody a fantastic product and a really professional podcast. But that does take up a lot of time and there is a significant cost to this. So that’s why we’re really keen, if you can, just to give a little to help us keep this podcast going. If everybody that’s really listened and has really enjoyed the podcast episodes could donate £5. It doesn’t need to be 50 or 100. Just those small amounts will all add up. And, as a big brand often says, every little helps. So, we would be really, really thankful of anyone that can, you know, give us the cost of half a pint and that would make our day.

Debbie: Very well, said, Katy. Thank you. And thank you to everyone who has donated already. And please do, you know, donate what you can. How’s your week been, Katy?

Katy: It’s been pretty funny, actually.

Debbie: I don’t know what happened. I’m intrigued.

Katy: So yesterday I went and got my blood tests. I’d got the paper form. There were still the digital geniuses wandering around the hospital. But this time, it’s not just the digital hiccups going on. My hospital, I think they’d had a burst water pipe where the normal blood test place is. And we were just in this sort of other cabin building. Like, I just felt really bad for, again, all the nurses, the people on the reception, trying to sort of help. We were just in like rooms getting our blood tests. And to be honest, I thought we’d have a massive waiting time, but we didn’t. And, you know, because I’m such a fun mum, I took my son to the blood test because he can’t stand blood tests himself. He is sat behind me right now. And we gave him a bit of an education about, you know, blood tests aren’t that bad. And then the nurse doing the blood test was talking about how, actually, medical professionals, apparently, I think he might have been lying, are absolutely horrendous because they try and guide him through the blood test process. It was hilarious, anyway. That’s me, How about you?

Debbie: Wow, that’s, yeah, interesting. Wow, what a fun mum you are.

Katy: I take a day off and I take him to the hospital. Dreamy.

Debbie: Brilliant. Yes, I always try to do mine when my kids are at school, but obviously it’s half term this week. Oh,

Katy: I did it on purpose. I booked it in half term so that he could come because I want him to see that a blood test isn’t that bad.

Debbie: Oh, okay. I suppose my children have had quite a few blood tests and they really don’t want to see mum having one done. But hey-ho, everyone’s different. But no, my week’s been, yeah, quite busy. Both my children are in the middle of that. Exams are doing their GCSEs and A-levels at the moment, so it’s slightly stressful. So I’ve been trying to do some kind of work outside, I’ve been trying to restore some furniture that I got last year, really old bureau, it’s beautiful, so I’m just making that look pretty. But the charity has actually been quite busy we’ve had. I think. I mentioned last week that we’re now members of National Voices who were there to influence the NHS. To really make sure that the voices of inflammatory arthritis are heard. So, I had our first meeting with them this week. Really interesting looking at how we can engage better with the NHS and the devolved nations, not just like a one-off project, but actually continuing that relationship and that partnership. So that was really interesting. And obviously we have the NHS 10-year plan coming out soon. So, we don’t know what’s in that yet and how the charity sector will be working alongside the NHS, but where we can, we will definitely be working. With them to help improve services for everyone and obviously health inequalities side. So, lots going on for that. And I also had a researcher reach out to me. He listened to our podcast last week. And he’s so, so lovely. And I know he won’t mind me name dropping him. Matthew Wragg at Bristol University. He’s doing a lot of research into self-management for axial spa. And we were just talking about how we want to make research so inclusive. From the start, even prior to starting, you know, coming up with the research questions and working with researchers. So, through the whole process, making the research findings a lot more inclusive and accessible. So, there’s a lot of… Ideas going around my head and what we can do. And we’ll get Matthew on the podcast in autumn to talk more. So, yeah, it’s very exciting, yeah, so just lots of things going on. And obviously we have our fifth Q&A session today, so should we crack on with the first question?

Katy: I think we should.

Debbie: This one came in actually on our online event. Um, and it’s what side effects have you had with medication?

Katy: So, I think I’ve, in the general terms, been pretty… pretty okay side effects wise, but one of the DMards that I was given right at the start, the kind of first one that you’re prescribed, I guess that gave me the typical kind of nausea, feeling really tired and just pretty dreadful. But actually, most of the other medications haven’t been too bad. One of the others did give me a skin rash, which so I stopped taking it. But that, again, it wasn’t horrendous. So, I’ve been, on the whole, pretty lucky. I’m going to touch my wooden door because you don’t like saying these things, because then something might happen. They told me when I was giving my biologic, you’d feel stoned when you put it in. I didn’t. No, really? I wasn’t. They said, you might feel stoned, and I never have. So, I’m a little bit disappointed.

Debbie: Oh. No, I haven’t had that. And I’m on biologics as well. But yes, the usual DMard, I had really bad nauseous with that. I felt it was worse than morning sickness. It was horrendous. And obviously up the folic acid didn’t really help. And then I was on tablets, and they went on to injections and that didn’t really work either. I still had those horrid side effects, and it did actually make me lose my hair. As well.

Katy: Oh, did it, because that was the thing I was really, really scared about. And luckily for me, it didn’t happen.

Debbie: Yeah. Well, it doesn’t happen to everyone. And I just think I went through all the side effects. I mainly had all of them, which is why I’m not on that medication anymore. But yeah, I used to have really long, I have lots of hair anyway, but I had really long, really straight hair. And then I was in the shower, and it was just, I was just clogging up the shower. Drain so much that my husband was just like, can you just chop it? So, I had my hair chopped. Um, and it still obviously came out, but it wasn’t as obvious then, because it was just a lot of it. Um, but weirdly, when I changed to biologics, it’s made my hair curly and wavy, and I had the straightest hair when I was younger. Um, even if you try to curl it, it wouldn’t stay, it would just be so straight. But then it was weird. Because when I then had it, this was after I had it chopped as well. I’d had it chopped for quite a number of years. Then when I went on to biologics, that’s when it then got curly. And it was really weird. I was walking, you know, when you go shopping and you just look at mirrors, when you just, you know, look at yourself. I didn’t recognize myself at all because I had this curly, crazy hair. And I’ve even tried to, it kind of felt like a part of my identity had gone.

Katy: Yeah. It’s funny how things like that affect you.

Debbie: It really did. And so that’s why I’ve always generally tried to tie it up. But I think in all the artwork and everything that we’ve had for the podcast. And what’s on the website of me, is where? I’ve just straightened it and straightened it and straightened it. Because that’s felt like that was me. But now I am trying to embrace the curly hair. I’ve got curly hair today. I’m just trying to embrace it because even I had to go and ask hairdressers, what do you do with it? And my friend, she’s got beautiful, curly blonde hair. And I even asked her, what do you do? And she was like, well, you’ve got a hairdryer. You’ve got a diffuser. And I was like, what? What’s a diffuser? I didn’t even know what a diffuser was.

Katy: Oh, it’s that big thing that goes up at the end. I’ve never known actually what the hell to do with it. Me neither.

Debbie: I even had to ask my friend what to do with it. Yes, I’ve had it out today. I just used it all. But it’s just, I think it’s just trying to learn that. Obviously, you have to go on the medications, you know, otherwise you just end up in pain and a lot of joint damage. But the medications can, as I say, just feel like your identity is changing slightly. You do feel, as you can feel awful, you can feel sick. And yeah, it can change your appearance as well. And obviously, I’ve been on steroids as well. And steroids, I had the typical moon face. Um, it’s we had went on holiday. My daughter has a really beautiful family photo of the dog. I think it’s Sandringham. No, not Sandringham. It’s a castle that Ed Sheeran talks about and sings about. I can’t remember what it’s called. But so, it’s a beautiful photo. But I just have the massive moon face. And I hate that photo because that’s not me. Because it’s, you know, we’re all there as a family. But yeah, I just think side effects can slightly change your identity, but then it’s realising why you’re taking the medication. Because I could, I would be so much worse if I wasn’t. And it’s just, and it’s just trying to embrace it, I think, going to your effing um land, um, so yes, I’m just trying to embrace it all.

Katy: We’ve got to call it fuck it land. You’ve seen my new socks?

Debbie: Yes, Katy last week had, yes, those socks. I hate saying I don’t like swearing on podcasts anyway, but yes, Katy had them on her socks. And she had to show us last week. It was quite an ingenious way of showing us your socks, Katy. But yes, so I think getting back to the side effects, I think that was kind of it for me, but I also had a skin rash as well, which is why I had to. Um, I think that kind of pushed me onto Biologics because there wasn’t any other more DMards that I could try. Because some would give me huge migraines, which I already sometimes suffer from as well. So, it just, it kind of got me into the biologics.

Katy: I’ve forgotten one side effect, yellow pee.

Debbie: Ah, yes, yes.

Katy: Day glow pee, but whatever form of that tablet I’m taking at the moment, because some have got a film on them, some of them haven’t, depending on which brand your pharmacist brings, gets in. And I don’t currently get the crazy yellow pee, but that is… Quite alarming, but I’ve been on that medication for probably nearly 14 years now, so okay, yeah, fair enough. I also find; do you not find it interesting seeing what the medications are also used for?

Debbie: I try not to, oh,

Katy: because I always think I wonder if the pharmacists, um, play like a guessing game. What she got based on what you’re picking up, I don’t know.

Debbie: I’ve never thought of that. I will now, oh my God,

Katy: because the only thing I pick up from a pharmacist, I’ve forgotten. What it’s mainly like, its main uses for. And I’m like, I really hope they don’t think that’s what I’ve got. I hope they know what I’ve got.

Debbie: Wow. No, I don’t. I don’t go to a pharmacist. I get my medications delivered.

Katy: Yeah. So, it’s only the one that I go to the pharmacy for. But yeah.

Debbie: Yes. Our producers just put in that Viagra has many uses. And I must admit the only reason I know that because I’ve watched top gear. And that’s when they use it, when they go up a mountain. Yeah. No one gets a stiff neck. Put it that way. That’s what they say. But that’s what they say when they take it. Because May can’t swallow it properly, so they’ll say he has a stiff neck.

Katy: But anyway, shall we move on to the voice note that we’ve got from Jade in Newcastle?

Voicenote: Hello.I would like to know more about your experience having kids with the infection. Did it affect any of the medications you were on? How was the pregnancy symptoms alongside the disease, how was the actual labour itself, and also the postnatal period. I’ve heard that a lot of women get flare-ups when they have the baby due to stopping, medications or other things. I have one baby currently and she was about 16 months old when I was diagnosed. And I currently would like to have another baby, but I’m a little bit nervous. Thank you. This is Jade contacting you from Newcastle.

Debbie: Yeah, thank you so much, Jade. That is a really great question. Katy, I’ll let you answer that first.

Katy: Yeah, so lots of parts to that question, I guess. So, I know from when I went through pregnancy, there’s been a lot of kind of updates and changes to the medication guidelines. So, I think my first point would be. This is something definitely to pick up with your consultant and the rest of your team, because they’ll be trained in. Which medications you can continue to take and how to kind of manage that process, depending on what medications you’re on and depending on which inflammatory arthritis disease you have. But for myself, I went through quite a long process, to be honest. So I was on a medication that… At the time, I know this has changed as well since you had to stop that medication for six months before trying to, um, get pregnant. So, I went through the process of getting signed off to have to, to have biologics, and it was a biologic that at the time, I don’t think you could take that biologic either at that point. Like, you couldn’t be pregnant on that biologic, so I went through this whole long process of getting signed off. To start the biologics let the biologic take sort of 12, 12 weeks to take effect. And then I gradually came off the other medication, then I had to gradually come off the biologic. But this has completely changed now. So yeah, this isn’t what you would. Anyone would need to to sort of go through. Because I know all the guidelines have kind of been updated and they were updated in the time. Took from me saying I wanted to have a baby to actually getting pregnant, right?

So, I had to come off all all medications, bar two and those. So, it was like, really complicated, and so I couldn’t actually try for a baby. Until about nine, nine months or so after I’d first had that initial conversation, right, that’s completely changed, and it was. And then I ended up having to get a medical professional that I’d met at an event, to write a letter to my consultant to let them know that these guidelines have changed, and I could actually restart. It was the biosimilar of the biologic I’d been on. That had then been approved at that point that you could take it up until about 32 weeks of being pregnant. Again, for that specific biologic, it might have changed now. But what was even more frustrating is the fact. That actually the biologic I am on now. You could, even at that point, you could take for pregnancy, for breastfeeding, for everything. I had to, like, really campaign my head rheumatologist, so what my? My kind of guidance, I guess on this is have that conversation with your medical professional about in terms of the medications. But also do your own research in terms of kind of looking up the NICE guidelines currently. Look at the British Society for Rheumatology, because I know they updated some of those guidelines about three years ago. And sort of really educate yourself on what you can and can’t do. And I do know some consultants, they’ll have their own thoughts. Because obviously, you know, bringing a life into the world, they’ve got to be quite risk averse. But, you know, in the current state of things. There’s no reason why you have to come off all your medications. From what I know, I’ve got rheumatoid arthritis, so I don’t know if it’s different for the different diseases.

And I was really lucky because all my symptoms disappeared whilst I was pregnant. And I know that can happen to a lot of people because your immune system kind of takes over when you’re carrying a baby. My labour was absolutely fine. The consultants I can remember. They tried to give, like, put me down for a C-section and I went, Mate, I can run a fucking marathon. You’re not making me have a C-section before. I’ve even, like, got through half of, um, you know, half of pregnancy. So, I said, No, you, you’re not like putting me down for that. I want to try and do it, you know, and there’s no, you know. If people choose to do that, you know, everyone should have a choice. You shouldn’t just be kind of pushed into a certain way. I don’t think, um,

Debbie: I am very different to you, but I’ll let you carry on. And my mind’s the extreme.

Katy: And then so I had, um, got in. Like the actual labour, I mean, life is not the nicest experience of your life. I did, I did, uh, tell some poor cleaner to f**k off as I was, uh, walking into the labour ward. She came up to me and went, are you okay? and I went, Watch the fd. Let’s blame hormones. Um, so anyway, cutting to the chase. So, I had a nice, um water experience, but then my child did not, uh, want to have a nice time, so I got rushed off to have. Um, I got prepped for a C-section, but then managed to you. I managed the forceps way. Oh, okay, my son is sat down there whilst I’m talking about this.

Debbie: Well, we know what he’s going to be saying at school next week, don’t we?

Katy: But anyway, so everything was fine, kind of as much as it can be when you’ve been given a spinal and you can’t feel your legs. And then sort of. I guess where things got trickier for me was because I’d stopped my biologic at 32 weeks, then post-birth. I would, so postnatally, it was a very gradual discomfort change. So, I was really lucky because my son was only five pounds, seven. So, he was really light. So, it was incredible. Like, it was basically a feather. So, feeding and all those kind of things was relatively easy because he didn’t weigh anything. And he didn’t weigh that much all the way through. But then it was when he was about nine months old. Everything it was like, I’d gone back. However, many years, five years to kind of trying to get diagnosed again. And I’d done my own research. I knew there was a medication I could take. I wanted to breastfeed. So, I breastfed my son for two years. And it was really frustrating because everyone was saying, no, stop breastfeeding, go back on your medication. And I was like, I know there’s a medication I could take because I’ve done my own research. And I went mental at, hormonal, mental, at the head of rheumatology and my department. I just screamed at him until he’d said, yes, I wouldn’t advise that guys, but you know, I,

Debbie: I, I personally wouldn’t either. No, things have changed.

Katy: And yeah, so this is, I know, it’s very different now. Um, but I should never have had to have got to that point of having to scream at somebody because I was so frustrated with what was happening.

Debbie: And yeah, yeah, and being a new mum as well, you know, I completely understand that. From a medication side, yes, there are biologics that you can be on. And please, please go and talk to your team as well, because you may have to change. To go on to that one and obviously give that time to make sure it works and everything as well. But just be open and honest with your team, and they should really help you to find that medication for you. For me, completely opposite of you, Katy, I wasn’t on any long-term medication at the time when I had my children. And I had spoken to my consultant before I got pregnant, um, and said, Would I flare? He said, No, I did, um, because I got it in my hips and my knees. And I had big children. And thank you, my babies were both over nine pounds.

Katy: Oh my god,

Debbie: um, and I. I remember I think I was trying to work out. I think this was with my second because obviously it blurs all into one and put this way for my first. I had an emergency C-section, she was a footling breach. Didn’t realize for 24 hours. I could talk about this on like two episodes of this podcast, by the way. But I won’t. So yeah, so I did flare. But with my second, I was going to, I think, again, with my second, I was in labour. I had natural labour contractions for 12 weeks. This is because of how my first came out. So for 12 weeks, I was in and out of hospital in labour. And at one point, they really thought my baby was coming. And so, they took me up to, like, the delivery room place. I’d never been there before. And I was just in agony. My hips were killing. My knees were killing. And I had this, I think it was a student midwife in the room with me. And she said, we’ll just go and get your wheelchair, and we’ll take you down. So, I was literally then about to go into the whole delivery suite. I think they were going to do another C section. And then this other woman, I think she’s like the Matron of the midwives. I don’t know their technical terms, so I do apologise. But she came in and she shouted so much at this young student, saying, oh, why the effing hell does she need a wheelchair? She can walk. And I was like, look, I can’t walk. I’ve got inflammatory arthritis. “I’ve got arthritis”. Don’t get up. It’s just like, whoa. And then I felt so sorry for the student midwife who was just being yelled at. And I was like, oh, do you know what? Sod it. I try to walk. And I thought, how much pain can a person go through being in labour and being unable to walk in a massive flare? So, I did. And then they then realised that my baby didn’t want to come out then, and so they ended up down and it. But it was just that was horrendous. And I just think, if anyone is ever in that situation, advocate for yourself. If you cannot walk, do not walk. Because I have done a long-term damage to myself and if I had fallen, obviously, I could have hurt my baby. And it’s just, Yeah, um,

Katy: but then it’s hard, though. When you’re in those situations, you kind of take what they say, don’t you?

Debbie: I always used to say, do what medical professionals was said, and but it’s kind of actually, if your gut feeling says it’s wrong, it’s wrong properly advocate for yourself.

Katy: Because they wanted to induce my son because they thought he was too big. But it was actually that I just got a lot of fluid, um, lots of fluid.

Debbie: I will send you a picture Katy. I will not put this on the internet. I looked like a whale when I was pregnant with my second. I was properly huge. And I have a picture of her being when I had a C-section with her. Coming out of the midwife was just like, in shock that this massive baby came out of me. But getting back to the inflammatory arthritis side of it all, and then postnatal. I found, um, feeding my children very hard because they were quite big. Um, as well. So, but then it’s just talking with your teams and hopefully this shouldn’t happen. If you can stay on your medication. Um, throughout, but then if you are flaring and you’re you just had your baby as well, just go and talk to. Um, yeah, your team is what I would suggest. And yeah, good luck. But I must admit having two as hard as it was, they are best things I’ve ever done, I’m very proud of my kids. But anyway, next question What is the most obscure cure you’ve ever been told? How could it ever cure your inflammatory arthritis?

Katy: I think this is quite an interesting one because I don’t actually think I’ve ever had not anyone like close to me saying, have like this should cure your inflammatory arthritis. But I’ve definitely seen things on kind of social media. I did have a lot of people kind of saying to me, have you tried this? have you tried that? what about this? what about yoga? what about? um, anti-inflammatory diet? what about? And it’s like, what, is that anyway? Um, I had someone ask me if they, um, talked to me about eating for your blood type. Um, so there’s, there’s. So, I mean, we could do a whole episode on this, couldn’t we? Really? I’ve, nobody’s really, I’ve never had. This is going to cure you.

Debbie: Oh, okay, I have. I was at a friend’s barbecue once, um, and this woman never met her in my life. Came up to me. And obviously we were just talking about life. And I was just saying, you know, it’s going through a bad flare. And no, she told me, if I became a vegan, it I’ll be cured. But then, on the flip side of that, that should mean that, if it is a cure, all meat eaters would then have inflammatory arthritis, and they don’t. So, yeah, you know, I’m not giving up. My dad was so butcher so like, I can’t physically, I can’t, I would be disowned

Katy: But also, nobody. Um, with food, everybody reacts differently to different foods. So, I think it’s more about sort of trial and error. Yourself of, um, working out what foods work for you and don’t. I know there’s lots of things going around, um, about sort of looking at, you know, foods that you like, checking your bloods, and then working out a diet based on what your samples, um, say. I mean, I’m too lazy to do that kind of thing, in all honesty. But I think you could kind of work some of that out yourself, knowing that, I don’t know, drinking too much alcohol will generally end up with a flare. And my son is doing drums behind me. Yes,

Debbie: I can hear it. Beautiful, beautiful. Sounds like a Phil Collins in the background. But yes, I must admit, I think there is, again, more research going into food and that as well. But I think everything in moderation, really. So, yes. So the next one is… Do you have any funny stories about living with inflammatory arthritis? I’ll let you have a think.

Katy: It depends, doesn’t it? I don’t really.

Debbie: I’ve got one. When I was 16, I went with a friend. We went to Australia. We travelled the western coast of Australia. Beautiful, love it, and I so want to go back. But we stopped off at Singapore, and loads of people got off the plane and didn’t come back on. So, me and my friend, we had two rows. And like, they’re massive rows, all to ourselves. So, she took the one in front. I took the one behind because my knees and my hips were slightly hurting, just sitting in that position, even though we had a little walk around the airport. I was like, great. I can stretch my legs out. I can move. Brilliant. And I didn’t realise I fell asleep. And the only way that I knew that I’d fallen asleep. Because the flight attendant, even though I did not call him a flight attendant at the time, was walking down the aisle with either the duty-free or the food and drink. But you know, the big metal containers that they pushed down. He was pushing it quite fast and went smack into the back of my head. My head had fallen into the aisle. And I think I had concussion. But they just kept shouting at me. It was my fault, apparently. But being only 16 again, I didn’t really want to. Yeah, but I’ll put it that way. I’ve never been back on that airline at all. I refuse.

Katy: Great. Bye. I mean, I think every time I go to the hospital, it’s quite a funny story.

Debbie: It is. Yes, I’m learning this, Katy. You need to have a few more. Yeah. Have you got an X-ray book in? No, no x-rays. And to be honest, I’m now just under the nurse by the sounds of it, because yet another consultant doesn’t work at the hospital anymore.

Debbie: That’s a shame, because I must admit, when I last had my appointment, there was some students there. And I was saying, you’ve got to stay in rheumatology. Stay in rheumatology. It’s the best you get. Yeah, it gets me great people like me. So why wouldn’t you not? I don’t think they will. But, you know, I try. I do my bit for recruitment. Anyway, last question. And it is, this person would like to stay anonymous. My partner has IA and I feel I am rubbish at supporting her. Do you have any top tips? I feel a bit useless.

Katy: Oh, that’s really sad. Because I think the fact that this person thinks, like, feels a bit useless shows that they really care about their partner. And really want to help.

Debbie: Yeah, completely.

Katy: I think it’s really hard because everybody’s different. I would imagine we both might have slightly different answers. But I personally think you need to talk to them, um, and sort of find out how they want you to support them. Um, because, and I think it’s just about being there for them. And you know, if they want you to go to an appointment. To kind of be the second set of ears. Because that can be really challenging, being in appointments and trying to take it all in when you’re kind of newly diagnosed. Yeah, um, but yeah, I think you know the fact, the fact you send this question in shows you care a lot.

Debbie: Yeah, I agree. I think communication is key here. Um, as well, but then also just thinking. When my daughter got diagnosed. My husband wanted to take us to, like Wales or something, He wanted us to go climb mountains again. But because my daughter couldn’t, I didn’t want her to be in that situation. So, it’s just thinking kind of more long-term, if you want to go on holiday, we know that with you, Katy, above 38 degrees can cause you to flare.

Katy: Well remembered, I’ll remember.

Debbie: Thank you so much. So something that, you know, maybe not too hot, but maybe Iceland might be too cold, but it’s just having that communication, actually, what is good for you? What do you feel like doing? Um, and that? So, I just think it’s just communication. And for me, I could never have enough tea or diet coke. If someone brought me tea or diet coke every day, that would be marvellous.

Katy: I just like to be stocked up with water. So,

Debbie: no, can’t go wrong with tea.

Katy: And also, just as a final thought, I think not everything has to, and probably the person doesn’t want it to be. Everything doesn’t need to be about inflammatory arthritis. I think people just want normality. And jump, you know, relationships go through ups and downs, so it’s just about trying to keep that same, um kind of relationship flow, um, going. So don’t feel like you can’t do what you would normally do. You might take the mick out of each other, um, you might get frustrated with them about something. You’ve still got to do that because otherwise your relationship isn’t normal anymore, whatever normal is.

Debbie: Uh, yeah, yeah, because you don’t want it to become like a partner carer, type role either. There is obviously that balance and it is just being.

Katy: I would still be annoyed. Yes, I would be so annoyed if someone was trying to take care of me. Because I do get. I mean, I like, I mean, I’m very. I’m vertically challenged, so I do quite like support and help with not putting everything in high, high places in cupboards. But my husband generally just goes. We do have steps, you know? Uh, so that sort of thing, that’s fine to do.

Debbie: It’s keeping it normal. That’s what you kind of have to do as well. So yeah, just communication and just be partners. Just enjoy the relationship and, yeah, the ups and downs that go with it.

Katy: And I think things like this can really make a relationship better because you really get to know each other better.

Debbie: Exactly. Yeah, no, I think that’s a good thing to end it on. So, thank you so much for listening. Please do donate where you can for our appeal. We’d love to keep these podcasts going until August, but obviously they do cost us. So, make this as professional as we can. Otherwise, it would be me and Katy on an iPhone, and that would not work because I don’t have iPhones. Thank you so much for listening. Please do follow us on social media. We are on Blue Sky, Facebook, LinkedIn, and Instagram. Sign up to our newsletter at inflammatoryarthritis.org. And until next week, when it’s Volunteers Week, I’ll see you then. Goodbye.

Katy: Goodbye.

Inflammatory! is making a real difference, helping people feel seen, heard, and supported in their journey with inflammatory arthritis. If you’ve found value in what we do, please consider donating to help us continue creating meaningful content. Every contribution, big or small, makes a huge impact.
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In this heartfelt and humorous Q&A episode, Debbie and Katy discuss the lighter and often hilarious side of living with Inflammatory Arthritis (IA). From hospital mishaps to dodging duty-free trolleys on long-haul flights, they share real-life stories that bring warmth and authenticity to chronic illness.

The episode kicks off with Katy sharing how her hospital appointments are never simple, this time, a burst water pipe added to the chaos. Despite the disruption, she still managed to get her blood test done and even turned it into a teaching moment for her son, explaining why regular tests are so important. Meanwhile, Debbie talks about the charity’s ongoing work, from ensuring the voices of those living with inflammatory arthritis are heard in NHS service improvements, to awaiting clarity on how the NHS’s 10-year plan will involve the charity sector. She also highlights meaningful discussions with researchers focused on making research truly inclusive and accessible at every stage.

They then go on to answer questions from listeners:

• What side effects have you had with medication?
• Pregnancy, medication and parenting
• What is the most obscure cure you have been told that would cure your IA?
• Do you have a funny story about inflammatory arthritis?
• How do you support a partner who lives with IA?

They end on thoughtful advice to partners supporting loved ones with IA and remind us that laughter and communication are powerful tools for navigating the ups and downs.

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/