Episode 61 Why is IA so misunderstood?

Introduction: We haven’t done a Q&A in ages; here are the answers with a side of chaos. Inflammatory! with Debbie Wilson and Katy Pieris, navigating life with inflammatory arthritis.

Debbie: Hello and welcome to Inflammatory with Debbie.

Katy: And Katy.

Debbie: Before we get fully into the episode today, if you listen to the podcast on Spotify, Apple or Amazon, please do click that follow. It really helps us with our analytics to know exactly who our audience are. Anyway, Katy how are you?

Katy: Not too bad. Been in the trenches this week because my son’s been ill from since Monday until today’s Friday and he’s finally gone back to school. So, it’s just that horrendous trying to juggle going to work yourself, finding someone to help with childcare. But also, I was talking to someone in the office yesterday that since COVID, you’re so much more aware, like you don’t want to ask grandparents when your children are ill because you’ve kind of got a better understanding that actually maybe that’s not the right thing to do. Cause when he first started nursery, pre-COVID, if he was ill, we’d just get the grandparents over and then we’d go to work. But now you don’t, I always kind of question whether that’s the right thing to do. So yesterday was all like pretty close to being better, but we didn’t want to risk him going into school because we didn’t want to get that potential phone call. And I had my annual review, so I didn’t want to have to leave. I mean, I did leave the office earlier than I would normally just to relieve granddad of his duties. And it’s really funny as soon as I come home, he’s like out the door straight away. And I was like, had fun then.

Debbie: haha Did you dose him up on like, yeah, the medicine, calpol I think we can say Calpol. Did you dose him up on that?

Katy: Not yesterday. Now, he’s really funny actually. He won’t take Calpol very often. It’s only if he’s like, he just doesn’t like it. And I’m like, you’ll feel better. Please take it.

Debbie: I can’t give, I couldn’t, when my youngest was tiny, she had horrendous viruses. She was just constantly ill. And the healthcare professionals would just say, just give her Calpol or Nurofen or other brands there are available. But as soon as I even put it on her lip, she was sick. So, I couldn’t give her anything. In the end, bless her, we did have to give her suppositories. we ended up in hospital. I think this was, this was way before COVID. So, this was probably in the early 2000. So, I think it was swine flu, I think it was, they thought she had that. And so, we were in A &E in a room on our own, but she was baking hot and it was so hot in that room. We opened the door and got completely shouted at, shut the door. And like, well, we need to bring her temperature down. And the only way to do it is like give her Calpol It’s like, no, don’t, she will throw up. And they obviously didn’t believe me. And then, yep, she threw up. But then they’re like, the only way to do it would be to give her suppository, but we can’t do it. And it was just like, had to, I even, I couldn’t do it, my husband, bless him, had to, it was massive. It was massive in compared to the small because she was only about six months at the time compared to her. It was just like, I’m sure it’s just like, this is the size of her foot. But thankfully that did bring the temperature down, yeah, viruses and everything. But as you say that but just thinking that you were on the vulnerable list though during COVID. So how did you feel that when, when your son got ill or did, he not get ill over COVID?

Katy: No, he did. mean, nursery were mental with, well, I guess as well in the very first part of COVID, nurseries were shut anyway. then when they reopened, I mean, I’ve tried to remember, it’s all a bit of a blur now, but we did use to phone calls constantly, like, and they weren’t allowed back into nursery. If they’d had a temperature, you had to go and get them a COVID test, which getting a COVID test on a two-year-old. It was absolutely horrific.

Debbie: They have to go right up your nose!

Katy: You felt like, yeah, yeah. So it was, was awful. And I did always have a little bit because of receiving a shielding letter, I did always have in the back of my mind, like, maybe I’ll, you know, I don’t know what this means for me. I think by that point, I would have had my first vaccination, because I can’t remember when we had our first vaccinations. It’s all…remember nursery reopened then when there some of the lockdowns, shut down again. So was all a bit in-out, shake it all about, do the hokey-cokey, wasn’t it, with everything.

Debbie: It was, yeah, because I forgot we were then in different tiers as well. And I think it then depended on which tier you’re in, what you could do. It was all very, yeah, know, six years later, thankfully we got through it all. But actually, I think my husband had COVID this week.

Katy: Yes, I remember you mentioned it earlier, yeah.

Debbie: He was really ill and I got ill for I think like a day and I was like, please don’t, please don’t. Actually, it’s just, it’s mainly more in my throat.

Debbie: But maybe it’s because I’ve had more vaccinations. I don’t know. But yeah, he was he’s been quite ill this week. Bless him. But thankfully, he’s come back to work.

Katy: I was saying, your husband’s back to work. My son’s back to school. All is right with the world.

Debbie: Yes. I must say because my daughter has JIA and I do want to mention this from a parent’s side, I have found it really, really hard over the last couple of weeks. And I’m never ever this honest with many anyone. Why not on a podcast? Because she’s 19 and she’s an adult and her knee has been so swollen, and I’ve never seen it as swollen as it has been. And it’s really heartbreaking because we thought she was in…remission, not even clinical remission. was off her medication, she was doing fine. And then it seems to have come back with a vengeance, and they’ve even were suspecting it whether it was in her spine as well. What they’ve now worked out is more muscular, which thankfully, it was the GP actually that picked that up. She was like, no, no, this is probably AxSpA So you need to go to your hospital, you know, quite quickly. And thankfully she had an appointment coming up. So she did, even though she had cancelled it because she was working, it was like, you can’t cancel an appointment with a hospital. You’ll never know when you’ll get it back.

Katy: because you don’t know when you’ll get another one and it’s such a hard lesson to learn.

Debbie: Exactly. I know. So thankfully they then reinstated the appointment. So, she went back and yeah, so she’s having a steroid injection, and it’s been booked for less than two weeks. And I’m still waiting for mine. I’m glad it’s getting settled for her over me completely, but it’s just been so hard to see. You have to let them do this. You have to let them go to the hospitals themselves and everything, but it’s just so hard as a parent just to sit back and just wait for the phone call to say, what they said. And because then she’s going traveling in September and she’s going to go sort of more backpacking. so she can’t take her injections with her because they have to be in the fridge and you probably wouldn’t want to take injections to China. think James did actually, so I might then have to have a conversation going back with him.

Katy: Yeah

Debbie: But then I was thinking, even if she was then put on a tablet form, there are some other medications that are mainly tablet form, but then it’s all the monitoring, the blood monitoring that goes with it. Because what happens if she has an adverse effect from the medication? It’s just everything that goes with it that you forget quite quickly. Unless you’re in it going through it all the time, you forget and it’s just like, yeah, so hopefully the joint injection will work, but it’s a day case, so I’m going to go in with her, thankfully.

Katy: Yeah

Debbie: So yeah, just to give us some support, but it is, it is hard at this age as a parent to, to take that step back as much as I have been in the past, just when she’s going through flaring and it’s just so hard because you’re not back at square one and I really don’t want to think that we are. And I want to get that across to her as well. it’s like, we’ve been there before we’ve done it. We’ve got through it. We’ll be fine. We’ve learned a lot from the previous times, but even still, it just kind of, it’s just that little knock back, isn’t it? When you get a flare and you’re like,

Katy: yeah, yeah, it always brings you back down to earth in a sense, because you feel like you’re doing really, really well. And then suddenly something sort of knocks you for six and you can’t, you can’t do anything. And something else I just wanted to ask actually, because I got a message from my medication supplier the other week saying that I’m going on to four weekly deliveries because there must be problems with supply. And I just, I know we’re on different medications, but I’d

Debbie: A supply issue.

Katy: I’ve heard that this happens, but it’s never actually happened to me before. So it’s quite interesting. There must be some supply issues at the moment.

Debbie: yeah, there could well be. I think that’s obviously why this is their contingency plan for it all. So they do have enough.

Katy: Yes. Yeah. This is what they do is to make sure that everybody still gets some because instead of sending me three months’ worth, they’ll send me a month so that then I can get through the month and then hopefully the supply will be better. So, it’s a very good thing actually that they do it because it means that everybody has medication.

Debbie: Yeah, so no, very interesting. Yeah, offline we’ll discuss and see and I’ll have a look. I’ll go and do some research to actually see which ones are being impacted as well and what’s going on. But this is generally just their contingency plan. So, it’s probably nothing to worry about, but it’s just it’s good that it’s been highlighted. Yeah. And as a charity, we’ll look into it a bit more.

Katy: Yeah

Debbie : But what we’re going to discuss today is because we haven’t done a Q &A in ages, Katy I know it was probably a year, but nine months ago we did one.

Katy: I think it was probably like September.

Debbie: So, we’ve had some questions come in and one of them is, and we mentioned it last week about the medication hangovers is how do you handle it?

Katy: So haven’t had a medication hangover probably since I would say maybe 10 years ago, because I haven’t been on that medication that used to give me a hangover. I don’t get any side effects, which is apart from yellow wee. That is my only way. So, I never know if I’m hydrated or not, because there’s no real way of telling.

Debbie: Right, so the meds you’re on now you don’t get any side effects at all. that’s good to know. Lovely like nuclear coloured is it

Katy: My son, whilst he was sick. He went, Mummy my wee looks like water. And I went, it’s because you’re actually hydrated. You’ve actually drunk water because I’ve been telling you, this bottle by lunchtime, drink this bottle by dinner time.

Debbie: You know when he’s older, he’s going to hate water.

Katy: I said, you’re going to get better if you drink water is the solution to everything. I know it’s not, but it helps. So, medication hangovers. So, I used to sort of manage it by taking that medication before I went to bed. So, I used to take it on a Saturday evening. And actually, funnily enough, I now have my injection on a Saturday evening. Just kind of, I guess I got into that routine. And then because generally Sunday would be quite a chilled day. I wouldn’t often do that much on a Sunday. I still try to keep Sundays as quite relatively quiet days. it meant I went to bed after taking it. So hopefully my thinking was most of those side effects would happen whilst I’m asleep. And then when I woke up, I mean, I would feel groggy because I ended up taking lots of folic acid. I only didn’t take it on the day that I was taking that medication because my side effects were quite relatively bad. mean, I was never vomited or anything like that, but I just felt awful. And then it was just about making sure that day after was quite a quiet day. So I wouldn’t have, I tried to keep Sundays quiet and that was my sort of way of getting through it. But then I guess the thing is if I wanted to go out on a Saturday night, I don’t know what I did.

Debbie: No, because I was the same. took mine on a Friday night because I didn’t want to wake up and do a school run and feeling absolutely awful. So thought I’d wait until the Saturday. My kids did quite a lot on a Saturday. So, my husband, was taxi driver for them while I felt a bit rubbish. But then all the mums went out on a Friday night and it’s just like,

Katy: Ugh.

Debbie: Yeah, so I didn’t drink, so I went to the pubs, and I was for a cup of tea. It was just in the back of my mind. And so I couldn’t really then fully enjoy myself. So I know I’m going to be taking this and I know tomorrow I’m to be feeling broke. But I did actually feel very, very nauseous. It was like when I was pregnant, you know, when you, the first…

Katy: Yeah, I think it’s similar to that. That sort of not like I was never sick. Yeah.

Debbie: Yeah. But you just feel so nauseous and even the smell of some foods made me go, I can’t, no. But then when my daughter was then on the same medication, she didn’t want to take it on a Friday night because she did all the things on a Saturday. And so then did we, I think we then changed it to a Saturday night as well. But then I might’ve then changed it as well, just so we’ve then felt rubbish together.

Katy: Yeah, film day.

Debbie: It’s quite nice in a way, yes, but then yeah, my youngest and my husband were like, what should we do? It’s like, we’re doing nothing today. yeah, so it was, it is again, I sort of, know, how, how you manage it and just being aware of the implications of how you’re going to feel and just kind of put that into your, But I must admit the medication I’m on now, I generally don’t feel any side effects. I know it’s going to hurt a lot and actually seeing, cause my, as I said before, my husband does them, the injection and then seeing his face afterwards knowing he’s caused me pain. It’s heartbreaking because he’s like, I’m just so sorry.

Katy: It helps you. So yeah.

Debbie: It has to be done, but yes, it just exactly. So, know, pros and cons but yeah, it’d interesting to know how you cope with it as well. Send in your comments as well. That’d be really interesting. And then the other one is then what’s your best tip for remembering injections? Because I think we both mentioned that we’ve forget sometimes.

Katy: So, my delivery company, the app, I can set up a reminder and it’s like a really annoying sound. It’s like…So that reminds me, but then you can like snooze it or you can say you’ve taken it when you haven’t. So you have got to be a little bit careful at making sure you do actually not just kind of snooze it like an alarm that you do actually then take it. So that’s my thing is making sure it’s in like digital calendars and then this app as well, just to make sure it’s done because mine’s every other week.

Debbie: Yes. Yep.

Katy: So it could be, know, if it, cause it’s not weekly, it’s, it is easy to forget.

Debbie: Yeah, it is. When I was on fortnightly, I always forgot. was like, did I take it last week? I can’t remember, I? did I not? And then, yeah, but I take mine weekly. And I take mine on a Sunday just because I generally can’t take my meds out when I cook dinner in the evening. So, I try to remember that way. That is just something I take. I’m in the fridge anyway, so let’s take one out.

Katy? And do you do in winter? Because what I find really hard in winter is it never really warms up so I put it under my armpit to get it warmer.

Debbie: I just leave it out a bit longer and just keep, because you can keep mine out for, think it’s about 24 hours. So I just try and take it out more beforehand. But then because it gets darker, I think.

Katy: If the house is only like 16 degrees, it never gets warm, does it?

Debbie: Yeah, I’ve never really thought that. just think if it’s been out the fridge, it’d be fine.

Katy: Because when mine’s cold, it hurts a lot.

Debbie: Mine hurts a lot anyway. I don’t know if it makes any difference whether it’s slightly warmer or colder. I don’t know. But, I do try to add it into my app as well, but then I’m very guilty of just hitting snooze on it and then keep forgetting or just cancelling it and going, do it in a minute. And then I forget the brain fog, how we forget as well. It’s all as if it really is. And then one other question is, what’s your guilty pleasure when pain hits?

Katy: Chocolate, which probably doesn’t help because of all the sugar. But it makes me feel better in the moment.

Debbie: Yeah, no, I’m with you with that. just mine is comedy TV shows. Even when I was younger, humour has got me through so much stuff. And it’s just my escapism. My go-to was only fools as a kid. And that’s just what I like. And I just go back and watch even the grand tour we mentioned, you my love of cars And I just go back and just rewatch all of them because it’s just…My brain just completely forgets everything that’s my escapism. But what’s the weirdest symptoms you’ve had that no one warned you about?

Katy: I think this is quite a tricky question because I’m trying to think what I’ve had.

Debbie: I think mine is fatigue. It’s not the weirdest one, but it’s the one that no one really warned me about because just the lack of energy. It was just constantly all the time but I’m just having to learn how to pace myself a lot more. And it’s taken 30 odd years to do that and I’m still not doing it very well. But that’s what I’m having to learn to do because my energy levels are just not what they used to be, whether that’s also age as well. But it has, yeah.

Katy: That kind of like, well, I would probably say it was some of the side effects from one of the DMARDS can’t like, they’d said that people can feel this, this and this and you’re like, surely not. And then it just, it used to hit me like a ton of bricks. I couldn’t, I just couldn’t function. So, I think, I think it was probably some of the medication side effects because you just didn’t really, maybe you didn’t really listen properly when you being told about them and kind of think, surely, surely not.

Debbie: Yeah, because I can’t really try to say like one in 10 or one in 100. And you’re like, I’ll be that one that doesn’t feel a thing. That’s me. Of course. Yeah. Yeah. And actually, no, what was that again? So yes.

Katy: I’ll be fine. Be great. But then you will hear some, like some of the medications, there are horrendous side effects. I’m always really thankful that I didn’t get those side effects, but it was just that sort of like, you just feel.

Debbie: Yes. You do that’s I think that’s the best way to go because that’s exactly how I felt. But I feel like that sometimes as well, just I wake up in the morning and just like, I wish it was yesterday because I had a bit more energy yesterday. I don’t today. And it’s just, it’s just that roller coaster of energy really. Yeah.

Katy: Yeah. Well, and I think it is that up and down, the fact that you don’t actually know day by day how you might feel. You can feel great one day and then horrific. I mean, I’m sure we can all have a diary of what we’ve done each day and then how we feel, but I still don’t believe there would be a proper up and down based on what you’ve done in the previous days. So, I just don’t think it works like that.

Debbie: Yeah.

Katy: There will be patterns, but I just don’t think it will be as neat and tidy as maybe we sometimes think it could be.

Debbie: I agree. Now that actually leads us on to another question. What does a realistic day look like for someone living with IA? I don’t think there is an actual like an ideal realistic day because but also I think people don’t realize how stiff we can be in the morning though. no one really sees that and actually just the effort also to get out of bed knowing that it’d be easy once you get moving and everything but it’s just that initial my gosh my body is like a board it doesn’t want to do anything

Katy: And I think, don’t limit yourself as well based on having the disease, but also think about, because it depends on what you did pre having inflammatory arthritis. Everybody, like people without inflammatory arthritis can all do different things. And some people can and can’t do certain things just based on, their biology. So, it’s really personal and it really just depends, and it’s a day by day thing.

Debbie: it really is.

Katy: So what practical steps do think people can take to avoid falling through the NHS cracks?

Debbie: That’s a good one because I am. If anyone knows, please let me know. I suppose it’s just phoning and I will have to make phone calls. Yes, yes, completely. But what would you say though to that one?

Katy: I think, I mean, it is trying to be as, I mean, I say this, but I’m not very organised, but it’s trying to be as organised as possible in terms of making sure everything’s in your diary. I mean, it’s really hard though, when appointments keep getting changed or moved around, swapped around. Sometimes you can’t remember which appointments are phone call, which appointments in person. And I guess if you’re…

Debbie: Yes. And which hospital?

Katy: And which hospital, because if you trust as many hospitals, you could be anywhere. I think if you’re newly diagnosed as well, it’s just really trying to understand all the different steps that you’ve got to take because there was all, I remember all the sort of imaging stuff, all the blood tests. And it’s can like things like blood test forms or digital codes, whatever they are, depending on where you are.

Debbie: Yes.

Katy: making sure you’ve asked all those questions and really question everything so that you kind of really understand what the next step in the process is. and try and make friends with the nurses. I actually think can be quite helpful if they know you, then if you do make a mistake or miss something, then hopefully they’ll support you as much as possible.

Debbie: because I must admit when I had, at the time when obviously I wasn’t, when I was diagnosed many years ago, mum would have probably got all the letters. But now I had, it’s just, my medical file is huge. I have all the paperwork I know that I had a letter come through, changing the dates, but then trying to find that letter though, again, it’s trying to be organized. I think in I’m organized, I’ve put it in my file, but then because my file is said not that organized, I shove everything in. It’s just like, is this in person? As you say, is it a phone call? Which hospital is it? Is it a nurse? Is it a consultant? What is it as well? So it’s just.

Katy: Yeah, because I do rock up to appointments and I’m like, I don’t know whether you’re a nurse or a consultant or…

Debbie: Yep. But then what I remembered I had to do then for my daughter was then I took a photo of every letter that then came through and had an album on my phone to say this is medical. Yeah. And also, when you’re flaring as well, I used to take photos and then just put it in a medical file in my album on my phone.

Katy: That’s a good idea. I like that. Yeah, that’s a good tip. I really like that.

Debbie: So that’s my top tip for that.

Katy: Yeah. Okay. And how, a final sort of question, how do you have honest conversations with friends and family without overwhelming each other? And do you?

Debbie: No, no, I don’t. I just say I’m fine because I don’t want to get into it all. And I think it’s harder with different family members. Some understand a lot more than others. But then I just find, actually, I don’t want to talk about it. Listen to the podcast.

Katy: Yeah. I will, if I’m in pain, will say don’t annoy me today because you will get a very aggressive response.

Debbie: Well, there is that, but I think close family members then know when I’m in pain because I am probably more grumpy and I’m more just like, don’t annoy me as you say. but, but then thinking though, but when you were newly diagnosed though, did you, obviously we had Kat on as well and she probably didn’t really understand everything that was going on with the diagnosis but then you didn’t really talk about it either. And it is hard. And I think I’m hoping that, what we’re trying to do is a charity with a podcast that society has changed it. And we can have these conversations because there is a lot more information out there, but then it’s just trying to understand how it affects you. Because it affects people in very different ways. And even when people come back and say, Oh, well, my friend had a different type of inflammatory arthritis and all they did was smile every day. I was like, well, that’s great for them. You know, I can smile every day and fake it, but not when I’m in my own home. You know, this is otherwise I can’t relax anywhere. So yeah, completely. it’s just also realizing that it’s hard to have those conversations as well because everyone has those misconceptions of

Katy: No, there’s no point. You’ve got to be authentic.

Debbie: and as soon as you say that, I know what that is. And that actually leads us onto, you know, we’re gonna be finishing shortly, you’ve got to finish the sentence. The world would be better if, and my one would be that people respect and are lot kinder to each other and just accept that there are different types of arthritis.

Katy: Yep. Yeah.

Debbie: and autoimmune inflammatory arthritis is not osteoarthritis. So yeah, what would you say to that one?

Katy: So I’d probably just say the world would be better if everyone could accept each other’s differences. Because we’re all individuals, we’re all different. And if we can all just accept that and be a bit more and I think as you said, kind of be a bit more respectful of, know, actually, actually, actually, I’m going to change my answer. The world would be better if we were all better listeners.

Debbie: Yeah, completely. Active listeners and not just, yeah. Yeah. And glazed, eyes glazed over and

Katy: Actively because not just saying yes, yes, yes, actually understanding it. Yeah. Finish this sentence Debbie.

Debbie:

Judging people.

Katy: I’m going to say assuming they know everything.

Debbie: And also, yeah, there is one more if you could ban one thing, what would it be? And my thing would be that misinformation that’s out there.

Katy: Yay.

Debbie:  And also, people then, we get it a lot on our social media as well, people preaching about a cure, you know, and again, this goes back to being kind and respectful to everyone and knowing that IA affects so many people in so many different ways. And if it’s worked for you, brilliant, great, you know, continue whatever you’re doing, but it doesn’t work for everyone and stop being that it’s kind of that preaching type, which really, really annoys me. And it can make you then feel that, my gosh, maybe, maybe I’m doing something wrong by taking my medications and doing everything that I can. Yeah, because one of them is, you have to fast for like 24 hours or longer, and that’s not good for you. I couldn’t do that because my blood sugars levels would drop so much and I probably then wouldn’t be around ever after that. But that, you know, but it’s just like, I can’t do that. And there are other medical reasons why I can’t. So yes, it’s that preachy side that just does my head in.

Katy: Yeah, I might go with like influences. Let’s de-influence everybody.

Debbie: Why is that?

Katy: Because again, it’s that kind of preachy thing, isn’t it? Like, look at me, I’m amazing. When actually, you’re not showing everything.

Debbie: Yeah. And again, I think that’s also why on social media, I think it is needed for under 16s because you haven’t got that maturity to kind of say that’s, yeah.

Katy: To understand that this is just, it’s just a highlights reel. It’s not, you know, it’s not, you’re not seeing, I don’t know, someone clearing up, cleaning up their son’s sick on the kitchen floor.

Debbie: This isn’t everyday life. Yeah. Just look amazing and they’re having the best life. So yes, life isn’t like that. So no, I completely agree. I do just want to say that I am reading Charlie Robards book at the moment, Hitting AS for Six, and it is so inspiring. And he’s talking about, the mental health side of it and growing up and just really wanting to be a cricketer and how having that condition, but how he’s learning what the condition does to his body as well. It is just, it is a really, really absolutely fascinating book and all the profits do go to NASS, an amazing charity. yeah, I will put the links on the show notes and on our newsletter as well. So please sign up to our newsletter. We are at inflammatoryarthritis.org. you’ll get more information about lots of research going on. And one research actually that I’ve seen is starting, I think to happen is about weight loss jabs. And because we’re actually going have someone come on and even weirdly it came up on Instagram yesterday. she’s having these conversations all the time in clinic. And we know that having inflammatory arthritis, can impact on our movement and trying to stay the healthy weight as well, the weight management side of it. And does this help us or not?

 But it’s just interesting that this is what people are now talking about and this is something that we need to be having these honest conversations with. So whether you’ve had them, whether you’re thinking about having them, whether you completely disagree, we would love all your comments and your opinions so we can have a really balanced couple of episodes on this as well. So again, please send them info at inflammatoryarthritis.org. we are on social media as well. We are on Facebook, Instagram, LinkedIn and Blue Sky. So please send us your comments so you can DM us as well. And until next week, Katy on our 62nd episode, it’s goodbye.

Katy: Goodbye.

This week’s episode brings back a long‑overdue Q&A, complete with a side of chaos. Between sick kids, COVID flashbacks, swollen joints, medication hangovers and the emotional weight of parenting with IA, we still show up with the Inflammatory! honesty and humour you expect.

We talk about the realities of juggling life, work, illness, and parenting, including Debbie’s candid reflections on her daughter’s JIA flare (“her knee has been so swollen… it’s really heartbreaking” ) and Katy’s week “in the trenches” with an ill child and childcare backup dilemma post‑COVID “maybe asking the grandparents is not the right thing to do” .

Topics Covered

• Parenting while managing IA; the guilt, the logistics, the emotional load
• COVID memories, shielding, and how our instincts changed
• Debbie’s daughter’s JIA flare and the heartbreak of stepping back as a parent
• Medication hangovers: how we handled them then vs now
• Tips for remembering injections (and why snoozing reminders is dangerous)
• Weird symptoms no one warned us about
• Fatigue, pacing, and the myth of the “realistic day” with IA
• How to avoid falling through NHS cracks
• Honest conversations with family and why we often don’t have them
• “The world would be better if…”
• The dangers of misinformation and preachy “cure” culture online
• Charlie Robards’ Hitting AS for Six and why it’s worth reading

Key Messages

• IA affects everyone differently, comparison helps no one
• Fatigue is under‑discussed and overwhelming
• Organisation helps, but the system is still complex
• Kindness, respect, and active listening make the world better

Key words: Inflammatory arthritis, IA flares, JIA, arthritis fatigue, medication side effects, biologic injections, NHS rheumatology, chronic illness management, pacing, brain fog, and steroid joint injections.

Resources:

Purchase Charlie Robards Hitting AS for Six (all profits go to NASS)

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Follow Inflammatory Arthritis UK on Facebook, Instagram, Bluesky and LinkedIn

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/