Episode 4 – Our first Q&A

EP 4: Our first Q&A

We’re handing the episode over to you today. It’s the very first Inflammatory! Q&A podcast. Inflammatory with Debbie Wilson and Katie Pieris. Navigating life with inflammatory arthritis.

Debbie: Hello and welcome to Inflammatory with Debbie and Katy. It’s the risky episode today. We thought we’d do a regular Q&A session and then we remembered we’re not the rest is politics. Would we actually get any questions? But we’ve had some really, really good ones sent through. So, thank you so much. And we want you to be part of this community. So before we get on to the questions, Katy, how’s your week been? And how’s your son? Is he still sick?

Katy: Thankfully, he went back to school after a couple of days off. So, we got through that one. He’s a little bit of a sick note. So I’m sure it will happen in the next couple of weeks and probably just after half term. So not really looking forward to that. How about yourself, Debbie? How’s your week been? Any more slips?

Debbie: Thankfully, no, I haven’t fallen over. I’ve managed to stay on two feet. Yes, for the last week. Yeah, I’ve had a, I think it has actually impacted my back. I had an operation a couple of years ago on my back and I do have inflammatory arthritis in it. But yes, I think it kind of, knocked a little bit. But yeah, it hasn’t been too bad. So yes, but mainly on two feet. And yeah, it’s just been, it’s just been miserable. Trying to take the dog out for a walk. Trying to get in between the rain. It’s just been a bit of a nightmare. But you know, we live in England. So what do we expect really? So yes, but you’ve been okay? Inflammatory arthritis wise?

Katy: Yeah, not too bad. So, I’m on my period this week. So I always seem to get a little bit of a slight sort of niggle. A bit of sort of the start of fatigue. Feeling a bit miserable because of the hormones. I always feel a little bit sad at this time. A little bit frustrated. I mean, I don’t know yourself. Do you find that you get that when it’s that time of the month?

Debbie: I do. I find I always wake up during the night. I think a couple of days beforehand and it’s in my knees. I get really bad pain and aches in my knees. It kind of feels like my legs just weigh about 100 kilograms. It just really, really aches. And so I kind of know it’s coming in a couple of days. And yeah, hot and everything. But I think that’s just normal with kind of period stuff and that. But do you then flare with the hormones or do you kind of just not?

Katy: Sometimes, yes. But I haven’t really for a couple of years. But I feel a bit of a kind of niggle in my wrist that is mainly affected. So that’s where I start to feel and it kind of builds up and goes a little bit down my forearm. So it’s strange. But I don’t actually flare.

So it’s not so bad, but it has been in the past. And I’ve heard a lot of people kind of talking about this being a bit of an impact of being on your period that your hormones seem to affect it. But I don’t think there’s actually much evidence around that.

How about yourself, Debbie?

Debbie: Yeah, just mainly, as I said, it’s mainly in my knees. And I don’t seem to have any relationship between coming on that flaring in that. But I do think there’s something with hormones, especially with teenagers, when they’re sort of going through the puberty sort of thing and the hormones, but also kind of the other end of it or when you’re going through menopause and that. And I think that there is a lot of research now going into it all. Because obviously your hormones change and how that changes and affects your body. I don’t think we really know yet. So I know there’s going to be a lot more research going into that. So yeah, so watch this space. If it comes out, we will let everyone know. So but yes, anyway, shall we get on to the questions?

Katy: Yes, I think that would be a great idea. We’ve had some fantastic ones coming through. And if you’re happy, there’s one that I’ve kind of clocked that I’d be quite interested to know a little bit more about it.

Debbie: Yeah.

Katy: So there’s one specific to JIA. And we’ve had quite a few around this area. And so somebody asked, I wasn’t sure if juvenile arthritis is called that because Debbie was diagnosed as a child. And in terms of does that diagnosis stay with you until you’re an adult? Or does it present differently once you once you turn 18?

Debbie: Right, that is a good question. I think I probably should have clarified that more in episode one when I said I have JIA, juvenile idiopathic arthritis. So let me break it down. So, juvenile means you were diagnosed with it before your 16th birthday. So, if you had a type of inflammatory arthritis, you have JIA under your 16th birthday. Idiopathic means there’s no known cause. They don’t know why it happened. But having idiopathic is just the worst name because then as soon as children say, Oh, you’re an idiot. It’s just like, no, why put that name in? Medical people, come on. But anyway, and the arthritis means inflammation of the joints. So that’s what JIA means.

And it can stay with you for life. There are again, this is where inflammatory arthritis and JIA again, it’s very complex because there’s seven types of JIA. It really depends on the number of joints that are inflamed and also whether your organs and your skin inflamed as well. So it’s that then you get your subtype of JIA. And even within them, there’s a very different percentage of actually how many people, how many children can have it for life, or they can go into remission, and it may never come back. Unfortunately for me, I was one of those that it stayed with me for life.

So I do have JIA and I’m an adult with JIA. And I know some of the comments that we’ve had come in saying, it’s so nice to hear an adult with JIA as well, because I think we’re in kind of minority. But what has happened recently is that we do get re-diagnosed in the medical setting. So we can access the medications because for juvenile idiopathic, the medications for them are for children. But again, they didn’t realise that adults can have it. So again, they, clinical trials and everything means that it hasn’t really been tested on an adult with juvenile idiopathic arthritis, but they’ve been tested on adults with say with rheumatoid arthritis. So this is where it can get re-diagnosed or re-labelled, should I say, so we access the drugs. But medically, we do have JIA as an adult. Does that clarify? Does that help?

Katy: That’s really helpful. That really helps me because obviously, I don’t have JIA. So it’s really useful to kind of understand that from your perspective.

Debbie: Excellent. Well, yes, I hope it’s clarified that for everyone else as well. So, one of the other questions that we did come in, and this came through Instagram, we’ve got questions about this illness and mental health, as I think there have been some links between RA and mental health. When you’re living with discomfort or pain each day, and when I’m having a bad flare up, I can find this can really affect my mood and mental health. And I get into a really negative pattern of feeling sorry for myself, almost jealous and resentful of friends who seemingly have perfect health. So, I guess how to manage that and not let that side of the illness take over. What would you say to that, Katy?

Katy: Well, firstly, really, really empathise with the person that submitted this, because I think, especially for myself, kind of in that first year to three years, it’s something that you really, really struggle with, especially if you’re used to not having any sort of issues day to day. So that sort of constant pain until it’s under management does impact your mood completely. I completely agree that, you know, being in pain day in day out, does just make you feel really angry. And I don’t think there’s anything wrong with sort of expressing those feelings.

It’s hard to know, you know, how to do that, and I guess in a healthy way. And it’s something I think you have to kind of learn as you’re sort of going on. And if you can, I think it’s about trying to have those open discussions with friends and family, or somebody that you trust.

And that could be somebody that you trust professionally. So, whether it’s through sort of counselling or getting some other support, which I think you can sort of get that if you kind of ask your consultant, it wasn’t something I was offered. But I think they are a little bit more open to that these days. So, I think there’s a lot more support out there. And Debbie, how have you sort of come to terms and sort of got through those hard days?

Debbie: Yeah, I think it’s because, you know, our illness fluctuates. And I think that accentuates how we feel as well. And I think when we have our bad times, the mental health kind of side, kicks in and we feel even worse as well, which is completely natural to feel like that. Because, you know, especially if you’re doing things the day before, and then a flare comes on quite suddenly, and then you just like, oh, God, I have to deal with this now. And how do you? And I must admit, when growing up with it and kind of seeing all my friends go out and do things, I was, you know, completely relate to this lady as well.

I felt so jealous of them. It’s like, I just want a normal childhood. I want to go out and do all those things. But I can’t. And so obviously, that impacts me as well. And I think it wasn’t until I went to university and I met my head of faculty, and she had an autoimmune disease.

And for the first time ever, I spoke to someone who didn’t feel shame about it. She kind of, I think how you kind of said in the first place, it was just like you wear a badge of honour. It wasn’t kind of like that.

But she was just like, very open and talking about it. And it was the first time someone had actually been really open about her disease and but how she can live her life with it. And that really impacted me.

And it’s just like, oh, okay, I can. And I think it is just having that, even if it’s just that one person who can really relate and understand what you’re going through, which is why again, we’re doing this, because we’re there with these people, we know exactly what you’re going through. And sometimes the bad times, yes, they can be bad.

And you can feel you just want to scream you know, shout into a pillow. But how you feel is how you feel. Don’t then feel guilty for how you feel.

Just get it out and then realise that, okay, how can you pick yourself up really, and know that, you know, there can be good times ahead. So it’s just how you kind of look across and go, I can do that. And then it makes you a stronger person as well, knowing that you’ve got yourself out of it as well.

But definitely a really good support network is really helpful.

Katy: I guess one thing is, how do we, this is a bit of a question for both of us, but how do we know when it’s the inflammatory arthritis causing this? And how do we know when it might just be, you know, general life when things get hard? I don’t know if you want to go first Debbie with that one.

Debbie: Oh, that’s a good one. Yeah. Again, it’s hard. I think because I’ve had it for so many years that I know when it is due to my inflammatory arthritis, and I suppose having a daughter with it as well, I try not to let that part take over my life much more.

I used to, and I think, you know, when I was growing up, my poor parents had, I was kind of fine in school, as you say, you know, always fine and everything in school or when you’re working or with friends. But then as soon as I got home, I was probably the most miserable child ever, because I couldn’t put that mask on anymore. And I think this is what you do.

You put the mask on, you feel fine. You come home, you want to relax, and it just comes off. And I was just, yeah, probably quite a miserable and didn’t smile very much. And probably, you know, impacted my mum because anything like that would. But now I really try, I think, I don’t want history to repeat itself. So, I’ve really tried to kind of go, right, okay.

It’s just, I think, thinking in yourself and having that inner monologue going, you can do this. You know, you’ve done it before, you can do it again. So how about you, Katie?

Katy: I can be an absolute arsehole, if I’m completely honest, when I don’t understand what’s sort of causing my mood, whether it’s because of hormones, whether it’s because I’ve got a flare coming.

And it’s probably people closest to me that see the worst side of me, because they’re the people that you feel most comfortable acting yourself. And as you said, Debbie, you’ll find that you’ll be, you know, kind of mask your feelings in certain situations. So, I probably am not that sort of open, maybe whether it’s at work or when I’m playing sports, but then when I come home, I’ll be my kind of true self. So, I hope that sort of answered that question. And it’d be really good for the next question, we got a voice note come through. So I think we’re going to play that and then we can have a listen.

Voice note Amy: Hi, Debbie and Katie, thank you so much for your episodes so far. I’ve been really enjoying them. I think episode three was my favourite so far.

I have a little question for you. My name is Amy. And I was just really curious as to what alternative medicines and therapies you may be exploring or have explored in the past that have been helpful to you or maybe haven’t been so helpful.

Yeah, just I don’t know whether it be nutrition or vitamins or supplements or Chinese herbs or acupuncture, I don’t know, something like that. I’m just really curious as to what your thoughts are. And, you know, if there’s any benefits in anything outside of those prescribed by your GP. Yeah, so let us know. Thank you. Bye.

Debbie: That’s a great question. Thank you so much, Amy. That was actually submitted via our website. So, if you want to do that for our next Q&A session coming up, please do it and you will be heard on our podcast. So yes, Katy, what alternative medicines have you tried?

Katy: So, this was something I explored at length when I was first diagnosed. So I remember I went pescetarian, so didn’t eat meat, but did eat fish.

I also heavily researched eat for your blood type, which is supposed to help, I think, from memory with inflammation. I looked at not eating inflammatory foods, so things like tomatoes, citrus foods, things like that. But what I found was it was quite difficult, to be honest, to understand whether it was those changes or the medications and that had kind of made an impact on how I felt.

So I think, for me, I always think it’s worthwhile exploring these types of things. But I guess currently, there’s no actual sort of scientific evidence to support that some of the alternative options work. But I guess it’s if I always think if it makes you feel better, then why not, essentially.

And I’ve also looked at sort of CBD drinks, CBD drops, CDB topical creams and things to try and help with sort of pain around the joints, which again, I’m in clinical remission. So, it’s quite tricky to know for sure how effective they are. But CBD for me, in terms of drinks, I sometimes use as an alternative for alcohol in the evenings as a sort of way to relax.

So, I’m kind of open to these things, but I also am quite traditional with using sort of medications that are prescribed.

Debbie: I must admit, when I was younger, I did go to a sports therapist and they did some weird stuff on my wrist. I phoned my mum and was like, what was it? We can’t remember.

But I do remember, I think it’s something to do with electricity, because they put like needles and then it just kind of like weird pain went through it. But I can’t remember what it was at all. And it didn’t work because then it went into my other wrist as well.

So it wasn’t that great. I don’t think I tried. I think a teacher wanted to do reflexology on my feet, but I hate people touching my feet, so that was never going to happen.

And then obviously, when I had my scleritis diagnosis and went on long-term treatment back in about 2016, it is, I must admit, it is hard because all you see on the medication box is toxic. And actually, do you want to take that medication? What really? But then I suppose, you know, evidence-wise, that’s the best thing that will kind of help it because it had already gone to so many joints, I couldn’t have it go anywhere else. And obviously, for me as well, I was going to lose my eyesight, so I had to take it.

And that’s the evidence, that’s what was out there. Because obviously, if it’s left untreated, your joints can get a lot worse as well. So obviously, medication-wise, we do take our medication.

Kind of what I do now, though, is I do do Pilates. That helps with breathing and relaxation. I take vitamins, mainly vitamin D, because, hey, we live in the UK, it’s going to be wet and rainy and we don’t really see the sun very much.

So I do take that. I try to cut out sugar and alcohol. I had quite a big health scare back in 2004. So, I have to kind of cut out sugar, alcohol, and just kind of cut down gluten a little bit as well. So, whether those things sort of helped or not, I don’t really know. It’s just obviously, for me, it’s kind of helping me as I am.

So I suppose it’s just kind of everyone’s different. Even medications can work for some people and not others as well. So it’s completely understandable why people do go and try different things.

But there’s kind of, yeah, just do what you think. But obviously, for our point of view is, you know, make sure you do take your medication. It’s there for a reason.

Otherwise, it can get a lot worse. So, Katy, question for you then. You’ve both lived with IA for many years. How has IA changed you as a person, do you think?

Katy: So I always said, I actually think in some ways, it’s one of the best things that ever happened to me. Because I think it’s kind of made me a lot sort of stronger, physically, mentally, in lots of ways. And it’s been a bit of an enabler in terms of giving me, you know, different opportunities.

I mean, when was I ever going to be on a podcast? If it wasn’t to do this, when would I have run the London Marathon? I only did that because of having this diagnosis. So I’m, you know, it’s made me who I am today. And I don’t think I’d be the same person I am without it.

Debbie: I completely agree. It’s made me mentally stronger, even though you don’t feel it at the time, but you do. You become more resilient and more probably confident as well as a person.

You know, you’ve gone through a really tough time, you’ve got through it. Actually, sometimes you just got to pat yourself on the back and go, you’ve done that. So yeah, be confident in yourself.

And it’s okay to talk about it as well. Obviously, this is what we do. And I kind of think sometimes talking about it can really help.

Another one, we’re just going to go through a few more now, is what do you do to relax?

Katy: I’m horrific at relaxing. I don’t really think I really like being relaxed. I much prefer to be doing things. But I guess, you know, I do the old good old sit in front of Netflix for hours and hours when everybody else has gone to bed to try and feel like I’ve had some alone time. That’s probably the main thing. I mean, when I went to a hotel for a birthday a couple of weeks ago by myself, I did have the best bath, which I never get to do when I’m at home.

So, I guess it’s picking and choosing your times. And I do like a spa trip. But again, maybe once a year, I get to do that. And you, Debbie?

Debbie: Yeah, I must admit, I do just like just chilling in front of TV. My favourite sort of go to because I kind of watched them growing up is the Grand Tour, the boys as I call them. And yeah, I just like cars and it just kind of just makes me escape in life really.

So, I just chill out on that mainly. So yes.

Katy: I really want to ask this question. We want to say thank you to Sarah. She said that our podcast is wonderful, and she can’t wait to listen to more. But she had quite a fun question.

And I love this kind of thing. Would you rather have a nose for a belly button or a belly button for a nose?

Debbie: What a fabulous question. I think I would have a belly button for a nose, I think, even though you won’t be able to smell that much.

But it’s just thinking if I had a cold, it wouldn’t go well. So yeah, how about you?

Katy: Maybe I’ll go a nose for a belly button because although if you’re on the tube, you probably wouldn’t get very nice smells down there. So I think we should leave that one there.

Debbie: I do just have one very quick question for you there, Katy. Because in episode one, we mentioned that you wanted a puppy. Is there any update yet?

Katy: Not yet. I’m still working on that one. So we’ve all got to keep talking about it.

Debbie: Oh, I thought we might have persuaded him.

Okay. Yeah, we need to kind of keep pushing at him, shall we?

Katy: Yes, absolutely. Excellent.

Debbie: Well, thank you so much for all your questions. And all these topics deserve an episode in their own right. And we’ve planned to talk about them in the next coming months and weeks as well.

Please do leave us a review. It really does massively help us out. Do check out our website inflammatoryarthritis.org where you can sign up to our newsletters as well, so you do not miss an upcoming episode.

And we will speak to you next week as always. So goodbye.

Katy: Goodbye.

In this week’s Episode, brought to you by Inflammatory Arthritis UK, Debbie and Katy handed the episode over to you, as it is the first Inflammatory! question and answer session.

Firstly, they cover the impact hormones has on their inflammatory arthritis, whether they flare during their period and what research is that out there or to come. 

They answer questions in more detail on the mental health of side inflammatory arthritis, how they both try to cope and how they differentiate the emotional side of IA to normal day to day living. Cover what JIA is more detail, and how it can be diagnosis for life.

They discuss openly whether they have tried alternative medicines, to answer a question that came through as a voice note via the website. Does it make a difference, and the importance of taking medication as it can lead to further joint damage, and for scleritis can lead to blindness.

They also cover what they do to relax, how Katy is not good at it, what Debbie’s go to TV show is and answer whether they would prefer a bellybutton for a nose or a nose for a bellybutton!

Also sign up to our newsletter so you are the first to know about upcoming episodes, research opportunities, any events and IA news.

If you enjoy this episode, please do follow the series. And please do leave us a rating or a review, if you have a few minutes to do so, it really does help us, thank you.

Disclaimer: The podcast is for informational purposes only and is not intended to replace professional medical advice. We talk about our personal health journeys and the podcast is not intended to provide professional medical advice, diagnosis, or treatment. We are not medical professionals and in no way claim to be medically trained. The podcast does not take responsibility for any losses, damages, or liabilities that may arise from the use of the podcast. The podcast does not assume responsibility for the accuracy of third-party content.

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