Episode 1

Inflammatory! Episode 1

The journey begins

Debbie: It’s only taken four years to get to this point. 

Katy: And now it feels very, very real. 

Inflammatory! With Debbie Wilson and Katy Pieris, navigating life with inflammatory arthritis. 

Debbie: Hello and welcome to the first episode of Inflammatory, a weekly podcast which aims to explore what life is like living with inflammatory arthritis. I’m Debbie.

Katy: And I’m Katy

Debbie: And together we’ve created the charity Inflammatory Arthritis UK, which aims to advance education and raise awareness about living with inflammatory arthritis, and the impact it has on everyday life. The charity’s vision is a world where everyone living with inflammatory arthritis can freely pursue their dreams and live life to the full. You can find out more and support us by heading to our website at inflammatoryarthritis.org where you’ll find a whole raft of information, blog posts and research. 

I don’t think either of us can know how this podcast is going to go and how it’s going to develop and grow, but I do know that we do have a really good sense of humour between us and we want this series to be a source of support, reassurance, realism and just hope for anyone listening. 

Katy: Some weeks will be incredibly positive, others we know will be much tougher and you will be alongside us every step of the way, hopefully joining our discussions as we grow. You’ll be able to contact us, send us voice notes and even appear with us on the show.

Debbie: In our episode next week, we really aim to look in depth at our diagnosis, that moment which I don’t think anyone will ever forget and neither will our families. We’ll look at how we ended up being diagnosed and how our lives changed forever from that moment on.

Katy: But for now, we want to share with you exactly what we both live with. So in a moment we’re going to open up our medical records. First though let’s look at exactly what IA is. 

Debbie: That is a really good question, what is inflammatory arthritis? There’s a big definition to it, which is basically our immune system is attacking our tissues in our joints. That’s kind of what it is. Osteoarthritis is different and that’s usually what most people think of when we say inflammatory arthritis but it’s not. As I said it’s our immune system attacking our tissues in our joints but it’s not only the joints, it is our organs and our eyes as well, and I never knew that it could affect your eyes, but it does. So that’s basically what inflammatory arthritis is.

Katy: Yeah so, I guess a question I had when I was first diagnosed is why does our body do this? Why does it get it so wrong? 

Debbie: Well, that’s the thing, no one actually knows. There is no cure for these diseases at all. There’s lots of medication and ways it can be treated but the aim of that is to reduce the disease activity. There’s no cure and I think the immune system, when speaking to consultants as well, is such a complex system that we really don’t know what is going on, but there’s things that we can do to just help mediate and kind of reduce the immune system and its overreaction. 

Katy: And what are those medications that you’re using day to day? 

Debbie: I’ve been on quite a few. I suppose the first ones everyone always goes on is disease-modifying anti-rheumatic drugs, DMARDs for short, I think that most people would know of, and what they do is, when I was talking to a consultant and actually he explained it, your immune system is overreacting and so it’s just tempering it down, so it just acts normally so it doesn’t try to attack the healthy tissues in you. But then there are other medications as well, biologics, the newer ones that have been advanced in the last 20 odd years, and they target specific parts of your immune system. You might have heard of anti-TNFs, and they target that specific, I’m not medically trained so I can’t go into too much detail, but that’s just one part of your immune system that does attack, it just kind of tapers that down to stop your disease trying to attack those tissues.

Katy: So, I know we’re going to go into this more next week when we talk about our diagnosis journey, but something that I always thought about and I know that my mum thought about was is there anything that we could have done to prevent it from happening? 

Debbie: Good question, from what I know, I don’t think it can be prevented but there’s probably risk factors associated with it. I think research has shown that smoking is one of them, but I was diagnosed when I was so young that looking back I don’t even know if I did anything, that ever actually came to our minds that would have prevented because it’s not in my family, no one else in my family has inflammatory arthritis, I was the first and so it was just, to be honest I really can’t remember it was I was very young. 

Katy: So, you’ve lived with it for a long time? 

Debbie: Yes, I was looking back, and I think it’s nearly 40 years, so probably when I was about four or five because it did take quite a few years to get the actual diagnosis. 

Katy: That’s quite normal, isn’t it? 

Debbie: Unfortunately, it is, I think people will know that it can take a lot of time from symptoms to the diagnosis.

Katy: So, I think we’ve put this off long enough, I think we need to delve into those medical records. Debbie, what is it that you were diagnosed with as a child? 

Debbie: As a child, I was actually diagnosed with children’s chronic arthritis, that is what it was known back in the day in the 1980s and it wasn’t until I think it’s around 1997 it got changed to juvenile idiopathic arthritis, JIA as most people will know. It can be a lifelong condition even though I’m an adult with JIA, it’s not just for children, adults can have it as well. 

Katy: And what does that look like on a day-to-day weekly basis for you right now? 

Debbie: Right now, I think probably like most weeks it’s very up and down and I think you’ll probably find the same for most people similar with inflammatory arthritis, you never really know what your life is gonna be like I’ve learned that I don’t plan for many things because I don’t like letting people down, so I don’t try to kind of overly commit to things.

I wake up and I suppose usually waking up, I have stiffness in my hands, generally the worst, so I do try to, I’m probably addicted but I look at my phone just to get my hands and my fingers working just so I can actually get out of bed, do the things that you’re meant to do and put the kettle on, make a cup of tea. So yeah, it does take me a while to get out of bed, people might think I’m extremely lazy but that’s my reasoning. Anyway, let’s take the focus away from me. Katie, what have you been diagnosed with? 

Katy: So, I’m diagnosed with rheumatoid arthritis, so I’ve had the condition now for about 13 years. 

Debbie: So, you were in your 20s when you were diagnosed? 

Katy: Yes so, I was in my late 20s I know we’re going to talk about this more next week, but it was quite a shift from being a bit of a party girl to then suddenly having to kind of slightly reset and think about my day-to-day and how I was planning my weeks and what my week should look like.

I think anyone living with any inflammatory arthritis condition will know that it’s up and down and fatigue is such a huge part of the condition, that I found I was always in a state of boom and bust. So, I was trying to do too many things that would wipe me out for maybe the next week, so I suddenly became aware that the only way I was going to survive day-to-day was to make sure I was thinking about the activities that I was doing. At that time, I was commuting into an office in London every single day of the week which actually now I realise is totally exhausting because I’m completely out of the habit. So, I was thinking about my week. When am I, I’m quite sporty, I did quite a lot of activities, so it was like when am I running? When am I playing netball? When am I commuting? When am I socialising, going out? And how do I fit around making sure there’s some rest in there so that fatigue doesn’t completely ruin what I want to do? Is it the same for you? 

Debbie: Fatigue, yes completely it’s people think it’s just tired but it’s so much more than just being tired, it’s pure exhaustion I think also when you’re flaring even if you’re on medication, we still flare it’s part of the disease and it’s just it’s something that just hits me, the pain that goes along with and the fatigue as well, because I suppose I’ve always lived with some sort of pain, because when I was younger, again we’ll talk more in other episodes about this, but I was never given long-term treatment so I’ve lived with pain all my life. I can live with pain but sometimes it’s that fatigue, it’s everything else that goes with it that really hits you and you just think I can’t do this but planning I’m not great at though. I still try to make the best out of every good day I have because I know that sometime down the road I’ll have a bad day, so I want to make the best out of the good days I have, I’m not great at kind of pacing myself.

Katy: And what does a good day look like?

Debbie: A good day for me, I suppose I really just make the most of it. I wake up and I think actually today I’m feeling okay, not as stiff, not as in pain so I can do things and I’m really lucky that where I live, I have really good woodlands and moorlands. So I have a dog and I take her out and I just appreciate everything, the seasons I really like and actually you know just going out, it’s cold but just appreciating everything, and I have two daughters and I just really look forward to seeing them when they come home from school and just appreciating life I think. How about you? 

Katy: So a good day, you know I’d classify myself quite a normal person, being able to do the sort of general everyday things that people do, working, playing netball, running, this is a strong theme for me, as you said trying to make the most of the everyday, doing as much as I can. A question that actually popped up which I think loads of listeners will be interested in and this probably sounds too contrived but what’s your dog breed?

Debbie: She’s a labradoodle, we got her as a compromise, my husband wanted a Labrador and I wanted something a little bit smaller because I think I knew at the time, when we’re looking at getting a dog, my elbows were getting very swollen and we did see a rescue dog and he was absolutely beautiful but quite big and I wouldn’t be able to hold him on lead, my elbows were not great at all, so we kind of compromised and got a labradoodle. She’s mad, she’s crazy, but she actually knows when I’m ill. We got her as a puppy and about three months later I got very ill, again we’re discussing another episode about that, but she is very protective of me, she knows straight away when I’m ill and she will come put her paw on my knee if she knows my knee is bad and yeah she’s been a lifesaver, she really has so I do recommend getting a dog. But yeah, she’s just crazy.

Katy: So, me and my son are currently trying to convince my husband to buy a dog so maybe this can be helpful.

Debbie: Yeah, push him over the edge to get one, what breed are you looking at getting? 

Katy: I want a dog that I can run with, but I don’t want a big dog so that’s where the difficulty is. I was having this chat with another friend the other day, it makes it quite tricky to find the right one and also my son will be going into the year at school soon where you don’t have to drop them at the classroom, so that’ll be a good point because I can use the school run as a school walk.

Debbie: Our producer just said to get a working cocker spaniel, I don’t know much about them.

Katy: Some form of spaniel is on the list. This will all get cut right?

Debbie:  One of my friends actually had a working spaniel but she actually had to give it up because it needed to work all the time, and it now works with the police and drugs.

Katy: Oh wow!

Debbie: Yeah, finding the drugs, it’s interesting. 

Katy: So actually I am a little bit like a puppy because I need walking, if I don’t move, and this is something I found really tricky with being diagnosed with rheumatoid arthritis, was because I’m quite active and I go a little bit mad and crazy when I’m not active, being told you might be need to be a bit more sedentary was a complete blow to me because it was going from doing lots of activities, to then your body really struggling, that I found to be one of the hardest parts to go through.

Debbie: I can kind of relate to that, when I was younger I was a gymnast, gymnastics was my life and I was actually quite good at it, my brother had other things but I had gymnastics that was what I absolutely loved to do, but when I then found out it was in my wrists and I tried to go on the vault my hands just gave away. I just couldn’t have the strength for that at all and it was then knowing that actually I couldn’t do that but what could I do? Because you know, being a gymnast you have to be active all the time, I loved being upside down which is a very strange thing but I just absolutely loved it, the majority of photos of me when I was young, I was literally upside down doing cartwheels in my grandparents’ house and that was it and it was really hard andI remember that day, I think then, I know we’re going into diagnosis more later on but that day when I then found out I couldn’t continue doing this, it really broke my heart. And then what could you do, but the doctors at the time though, the advice we were given was to rest, which is actually the worst thing because your muscles get weaker so quickly, so not only then when you feel a little bit better, the swelling is going down but actually you get pain because your muscles are that much weaker even to do things so it’s a double whammy 

Katy: Yeah 

Debbie: But now the advice is exercise, whatever you can do, do it even if it’s walking to the shops and back.

Katie: So, I remember someone saying the worst thing you can do is nothing, so even if it is as you say, a very short bit of movement, something’s better than nothing and thinking about your wrists, what other joints are affected for you? 

Debbie: Loads. I was never given any long-term medication as a child, so throughout my childhood it spread to my knees, my hips, my jaw and then eating was horrendous it was just so painful, my wrist, my fingers, I think my ankles, my elbows now as well and I have had swelling my ribs, I had costochondritis which obviously isn’t part of inflammatory arthritis but it can it can flare up and I also have scleritis as well which you may not know about.

Katy: Not that much so tell us some more. 

Debbie: Well, I never knew that it could affect your eyes, I think we mentioned this earlier on when I was talking about what inflammatory arthritis is and scleritis is the inflammation of the white of your eye it’s bizarre! I’ve never heard of it, it was so painful, I even had nodules on my eye. It was like a red eye, it was so painful. I think we have to do eyes and in another podcast coming up because it is so vital that people get their eyes checked. I ended up in an eye hospital A&E, again never knew that that existed and they diagnosed me near enough straight away, it’s because I have juvenile arthritis, again this is when our immune system just goes mad and attacks tissues that we have anywhere around our body but it’s not only that and we’ve touched on this as well when we’re talking about the exercise it’s not just the pain the inflammation, it’s the fatigue as well how would you describe to someone really what fatigue is?

Katy: It’s so hard to describe because I’ve just found that people don’t really understand, because we’ve all been tired and exhausted. We’ve all stayed up too late, not had enough sleep but it’s something completely different because it’s whole body encompassing. Your whole body is just completely drained of energy and you can’t even comprehend trying to move or just the simplest of tasks, I don’t know, opening your laptop logging on, feels really really difficult to do because you just want to stop and do nothing. And then on top of that, normally when I suffer with fatigue it’s because I’ve got a flare coming, for me it’s my kind of precursor to a flare, so I’ve come up with a few ways to sort of cope with it, to try and stop a flare coming but it just wipes me out I’ve got no energy. I don’t want to do anything, my brain doesn’t work, so it’s the brain fog, you can’t think of the next word you want to say, just like sometimes you can’t think about what’s going on tomorrow, just your whole brain is kind of ‘fuzzled’ is the word I would say. 

Debbie: I get that as well, the brain fog, I wasn’t ever too sure whether it was just my brain and that’s just how it works but actually, I think because I’ve lived with this near enough all my life, for me it’s quite normal to get that. But I don’t think I really get any warning signs of flaring though, so that’s really interesting that you have that. I don’t think I do it’s just sometimes I can be doing something, and my hands will just swell up and my hips, and I just get such an amount of pain with it though, and just getting that extreme sort of stabbing pain, I then know that that’s going to be flaring for a bit. 

Katy: And what do you do when you get a flare? How do you deal with it? 

Debbie: First of all, I do just try to ignore it because when I was younger, when I was diagnosed, the doctors told me just get on with it, we can’t give you anything for it so you’ve just got get on with it, and I suppose that mentality for me is always there, just try to deal with it and I do just try to pace myself a little bit, you know just thinking if I was going to do dinner, I was going to do lots of things that evening, I think it’s just being realistic and actually what I can do. 

Katy: So, I think this really shows how vastly different to people with inflammatory arthritis lives can be.

Debbie: Oh completely, even hearing from you what your life is like and obviously how my life is different as well and I think it shows that actually everyone’s life with inflammatory arthritis is just so different and I don’t want this to be doom and gloom and things like that because I think if it was, we wouldn’t be here anyway. But life is actually doing okay though you know, I think it’s just showing that I appreciate the good days, and the bad days are few and far between now so I’ve really tried to make sure that we are there for this community. If you’re going through a flare or anything like that at the moment, we’ve been there, we’ve done it, I probably have many t-shirts about it and actually you can get through it, it’s just having the confidence and resilience in yourself to know that you can get through this, it will take time but you also learn so much more about yourself as well, and I think we’re going to look into that in more detail, how it’s actually shaped you as the person that you are today because I think you’re an incredible advocate for people living with inflammatory arthritis and actually the two of us can really show that life can be great.

Katy: Shall we quit while we’re ahead? I think we survived episode one. 

Debbie: I think we have and I’m really looking forward to hearing a lot more about our stories and our lives together and if you’ve enjoyed the first episode, please do like follow and leave a review on any of your podcast apps and how you’re listening to the podcast today.

Katy: Next time we’ll be talking about our diagnosis story, how it affected us and everyone that we love. Until next time, from both Debbie and I it’s goodbye for now. 

Debbie: Goodbye!

Inflammatory! We want everyone to understand what life is like living with a chronic fluctuating disease. The founders of Inflammatory Arthritis UK, Debbie and Katy, give a unique insight into their lives covering the realities of living with inflammatory arthritis (IA) in a positive and friendly way. They will discuss popular topics and answer questions with honesty based on their experiences navigating life with IA. 

In this first episode of Inflammatory!, brought to you by Inflammatory Arthritis UK, Debbie and Katy look at what is inflammatory arthritis (IA), why we created a new patient led charity Inflammatory Arthritis UK, and their diagnosis of juvenile idiopathic arthritis and rheumatoid arthritis respectively.

They explore in more detail their diagnosis and symptoms of IA. How fatigue, which is one of the major symptoms, is always underestimated and misunderstood. Explain what their daily lives look like and how different people’s lives can be living with IA.

And they speak openly about how their lives have been impacted by inflammatory arthritis, how their joints are affected along with how they deal with ups and downs of living with a chronic fluctuating disease and trying to persuade Katy, who is like a puppy, to get a puppy!

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, 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.

For more information, head to www.inflammatoryarthritis.org

A Boutique Broadcast production for Inflammatory Arthritis UK