Episode 14 – Prisoner

Prisoner

Intro: Getting colds and viruses is a part of daily life. But when you have IA, a small cold can be a big deal. Inflammatory, with Debbie Wilson and Katy Pieris. Navigating life with inflammatory arthritis.

Debbie: Hello and welcome to Inflammatory with Debbie

Katy: and Katy.

Debbie: I think we need to let people know that this is not the first time we’ve done this today.

Katy: No, no, it is maybe the third or fourth because what did you forget to do?

Debbie: I forgot to plug my microphone in.

Katy: I mean, I’m pretty glad it was you and not me because we’ve had this issue before. And I now witness the difference in sound quality.

Debbie: I know you can probably actually hear me now to be fair. Yes, I just think it’s just a long story. I’ve been ill. I’ve had either a cold, flu. I don’t know what it was, to be fair. Last week, I did send a message just before we did the recording that I think I’m coming down with a cold. And oh my gosh, it was a proper, I was so ill.

Katy: Well, when you sent us a voice note on Monday, you sounded absolutely dreadful. I don’t know why you even left your house.

Debbie: Well, to be fair, I didn’t realize I sounded that bad. It wasn’t until I then listened back because my eldest is away as well and I sent her a voice note. She was like, Mom, you sound really ill. Are you okay? I was like, well, I’ve got something. I’m not dying. I should be all right. But yeah, then I listened back, and I was like, oh, I do sound pretty ill. But yes, I think you might even be able to hear it today. I’m not 100%, but I’m definitely so much better.

Katy: Yeah, you sound a hell of a lot better than Monday.

Debbie: Thank you. But over the weekend, I was, I couldn’t even talk at the weekend. When I do get ill, I don’t know whether it’s the same for you, but I do get like this domino effect of it really impacting on my inflammatory arthritis. And my jaw was so swollen. I think my husband was looking at me. It looked like maybe I was having a stroke because one side of my face was really swollen and the other one kind of wasn’t. So, it was just kind of my left side of my jaw was just so painful. And it meant that I couldn’t open my mouth very much. Great, you know, our producer would have loved it. I couldn’t talk. I think my husband did as well. I couldn’t eat and I couldn’t chew. So, I had to just eat soup. And that was it.

But even, I couldn’t eat, I couldn’t get like a big soup spoon in my mouth either. I had to get a smaller spoon, and it took ages. But it was just, oh my gosh, because I also have, I don’t know if I’ve mentioned this before. I also have reactive hypoglycaemia.

Katy: I have no idea what that is. What is it?

Debbie: Basically, I think everything in my body just overreacts. This is probably part of my personality as well. My insulin in my pancreas, it overreacts. If I have anything sweet, my insulin way overreacts, and it causes a really drop very quickly of my blood sugar. It can lead me to pass out and things like that. And I did, the only way of finding that out was they gave me, I had to go into hospital because they assumed my GP, lovely man at the time, thought I had pancreatic cancer. Because there was something going on in my pancreas, didn’t really know what. So, I got seen very quickly in London hospital. They were fantastic. But the only way to prove that this was, was they gave me a Lucozade. There are obviously other energy drinks out there.

Katy: So, was it a little bit like when you’re pregnant and you have to do the gestational diabetes test where you have to drink a really sugary drink? I don’t know if they did that.

Debbie: They couldn’t do that with me because that would have caused me and my daughter to have died. Yeah, it can be quite serious. Oh wow. So, what happens with the Lucozade, because it is so sugary, and I generally ban energy drinks in my house because of this reason. I don’t agree with them in a way, but everyone’s different. Because it has so much sugar in it and it’s obviously liquid, your body absorbs it a lot quicker. And so, my insulin just way overreacts to kind of bring my blood sugar down, but it brings it way, way low.

Katy: Right.

Debbie: So then it does cause me.

Katy: And is that similar to diabetes in any way? I was told it’s like the opposite of a diabetic.

Debbie: Okay. Because it does, hypoglycaemia does happen when you’re diabetic as well, because my dad’s diabetic. So, I do, again, whether this is, and he’s got a lot in his family that have diabetes as well.

Katy: Is he type one or type two? Well, his great uncle was actually one of the first, I think in the UK to be sort of diagnosed with type one. And this was way before the NHS. I know we’re completely off topic at the moment, but his dad then had to do so many jobs because this was before the NHS, in order to pay for his insulin. So, we have to be so grateful for the NHS that, you know, we don’t have to pay so much for all these medications that even now for people with inflammatory arthritis and diabetes use. So, but then there’s a lot of type two in my dad’s family as well. It’s kind of weird that what causes my dad to have a hyper, which is when your blood goes up, causes me to have a hypo. And obviously I have to keep my blood sugars at a very flat level.

Katy: So, this is why you stay away from sugar, because you’ve talked about staying away from sugar. But I thought that was to do with the inflammatory arthritis, but it’s to do with this or a bit of a mixture.

Debbie: Yeah. Whether it is a bit of both, I’m not too sure, but, but anyway, so let’s get back into what we’re talking about today is our colds and our illnesses and actually our general health and how does that impact on our inflammatory arthritis? And yet my jaw was so, so painful. And even all my joints, I just felt so achy and just everything hurt as well. But then I’m not sure whether that’s now also the fibromyalgia, because obviously that can trigger things as well. So, I was just in so much pain, and I was just, yeah, just no energy. And I think if I didn’t have felt better yesterday, I probably would have gone to the doctor. But it’s just, again, it’s that line of when do you go to the doctor and when do you not, how long do you kind of leave it? How about you, Katy, do you get ill?

Katy: I think you’ll remember me saying last week about my mum being a little bit like an elephant who never gets sick. I would say I’m more on that sort of side where I don’t really pick things up. I mean, I do get, don’t get me wrong, I do get the odd kind of sniffly nose, cough, sore throat, but it never really manifests into anything that means I have to go to bed, or I can’t go to work. So I’d say I’ve probably, in my 20 years of working, I could probably count on one hand the number of sick days I’ve had.

Debbie: Wow. Even on medications as well, your immune system seems to be working okay.

Katy: Yeah. So I’ve always been…

Debbie: I’m so jealous.

Katy: Because you read all the things that your immune system will go down and, don’t get me wrong, let’s go back five years and COVID. I was absolutely petrified, and I got the shielding letter probably about five years ago. So, getting the shielding letter, I was like, oh my God, I can’t leave the house. I’m going to end up dead if I leave the house.

Debbie: Those letters were awful. I know, they were horrible. It did read between the lines. It was like, go outside, you die. Yeah. Really?

Katy: Yeah. It was absolutely horrendous. However, I don’t think, or I’ve never tested positive for COVID, so I don’t think I’ve ever picked up COVID. But I have also had every single COVID vaccine going. I haven’t yet booked my appointment for this one, but I’ve had the text.

Debbie: Wow. And also on our website, the spring boosters are out as well. So, there is a lot of information on our website about the COVID vaccine. I’ve had COVID and it really triggered my inflammatory arthritis as well. I think my immune system does that. I think anything that I get, it does attack just everything. Everything overreacts. I think last week when we had that analogy of the sound system, it’s just like my immune system was just turned up all the time. And I was, yeah, with COVID again, it’s just like all the way up and just attacking everything. Okay.

Katy: So, you’re kind of ill and in pain for the whole time.

Debbie: Yeah, exactly. And it’s not, I think people don’t realize that when they say, oh, it’s just a cold. For me, it’s not just a cold. I am in so much pain and just lack of energy. And I feel like I just, the fatigue as well, it just feels like I could just sleep anywhere. And so unusual for me, I was asleep on the sofa at the weekend. That never happens. And even when I had COVID, again, I was just in bed, just sleeping because then also I get temperatures. But again, I get extremes. I think this is a theme of my body here. I get like Saturday; I was baking hot. And then Sunday, I was so, so cold. And I just couldn’t, I even had a hot water bottle, and we had blankets. I couldn’t get warm. I went and sat outside in the sun. And that was really nice, but it only kept me warm for a little bit. And then I just can’t, I just couldn’t control my temperature.

Katy: And what are some of your sort of coping mechanisms? What do you do when you can feel that you’re getting sick? What do you do to then maybe sort of protect your body to stop it getting worse? Even if it does get worse, I appreciate that.

Debbie: Yeah, I think first of all, I try to ignore it and just think, oh, it may just pass. It might just be like a 24-hour sort of thing. But then when I realize it’s not, I do just try to kind of clear my calendar a little bit as well. And just say, you know, there’s only so many things I can do. I don’t like driving or anything like that either. Because that just takes energy and concentration and moving of my joints as well. So, I have to tell my daughters that, you know, I won’t be able to take them to the gym. I won’t be able to do this or that with them. But they’re generally very, very understanding. I think that, you know, they’ve lived with me for long enough to know that I would if I could. But it’s just making sure that they realize that, you know, I’m not putting this on and I am quite ill. And they do step up as well. Again, I’ve mentioned that they’re young carers, again, for this reason as well. So, they do, you know, step up a bit and, you know, try to cook their own dinners and things like that as well. And it’s just for me, I’ve learned I just have to let my body recover.

As much as I will try and kind of fight it and keep going, I know that that would be so detrimental because it will last weeks if I do.

Katy: I’ve definitely got this wrong because sometimes I think I can run off a cold and go for a run to kind of sweat it out. But I have had the situation, I’ve had it both ways where, yes, that’s worked. But then maybe it’s been something a little bit worse. And the next day I’ve woken up and felt absolutely sort of dreadful in comparison to what I think I would have done if I’d have rested. So, it’s always that balance, isn’t it, of how much do you rest? How much do you keep doing?

Debbie: Completely, because also rest really makes your joints that much stiffer as well. And it’s just, it gets into that vicious circle. And it’s just like you need your body to rest so it can fight off the germs, the virus or whatever you have.

Katy: And that’s what it is, isn’t it? The fatigue is from our bodies fighting constantly, I think.

Debbie: Well, to me, that makes sense. Again, not medical, but I think that’s right. And it’s just why, you know, for all autoimmune diseases, you do have that fatigue because it’s your body constantly, it’s constantly working overtime all the time. But unfortunately, also for me, because I’ve had temperatures, I haven’t been able to take my medication.

Katy: Ah, so you’ve stopped? Yeah, okay.

Debbie: Because I take it weekly, so I’ve had to. And again, that kind of hits it as well, because then you get even that worse circle, because you’re in so much more pain because you haven’t taken your meds.

Katy: I mean, gosh, this sounds like an absolute bloody nightmare. I mean, you’re ill, so you don’t take your meds. You’re not on your meds, so you end up with more flares. Then you take your meds, it damages your immune system, and then you get ill again. So, it’s just an absolute, complete, vicious cycle of doom. How the hell do you cope with that?

Debbie: I just do. I think I’ve got used to it now, because I know that any time that anyone in my household will get ill, there is a 99.9% chance that I will get ill as well. Years ago, when I started on Biologics, because I was then so scared of losing my eyesight, I didn’t want to flare, I didn’t want my eyes to go. I can generally cope with pain in my joints, because I’m just so used to it. I’ve had this all my life, I’m more used to that. When it was my eyes, I was really, really protective of people coming into my house. Like, can you take your shoes off? If you come in, if you have a cold, please do not come anywhere near me. People don’t get it.

Katy: But that’s one of the benefits, I think, of COVID, is people have become a little bit more aware of the clinically vulnerable in society. Because, I mean, if my husband went and did a shop, I basically made him like, and I don’t get sick, remember, but I was still petrified. And I used to basically wipe him down with, what’s it called? All those like, with basically alcohol gel was just smothered across everybody if they came into our house.

Debbie: Yeah, well, we didn’t have, because myself and my daughter, we both had those shielding letters. So, we were really, really quite actually, no. So, we didn’t really have anyone come into our house. We did have, yeah, then delivery drivers, they leave the food outside and we wiped everything down because that’s what you did at the time. Yes, it seems so strange. You did that.

Katy: I’ve got anti-vat wipes, and I was like. I know, but then you can’t. Obviously, you can’t see me, but I’m actioning wiping food. You’re actually wiping something, Katy.

Debbie: Yes. But, you know, it’s weird to think that. And even then, I think we realized that you couldn’t pick it up from that. It was air bound. I can’t remember. I think we blocked COVID and lockdowns out of our minds. But it does really kind of prove the point that, you know, we’re not overreacting at all. Yeah. And for children as well. Thankfully, my eldest who has JIA, she’s a bit like you, Katy. She hardly ever gets ill, even though that she’s on the medications as well. She never really got ill, but my youngest, she gets ill. And then I pick everything up from her. And my eldest, her boyfriend brought in a cold. That’s where I’ve got it from. And it’s just, I just pick things up so easily. And I generally am quite, I can’t think of the word, but I’m cautious about being healthy and kind of just making sure that I’m not. Hygienic as well. I can’t think of the word at the moment. Hygienic as well.

Katy: I guess it’s kind of making, keeping surfaces clean when people have gone in. It’s also, you know, people touching door handles when I still feel a bit grimy going on like the underground in London because you just, you know, you want to be clean, and I don’t get sick. So, I always think I feel like this. How must it be for someone like you who does get ill a lot that it makes, you know, can it kind of trigger sort of OCD type behaviours?

Debbie: It did, especially COVID times. We were very, very much so. But then I realized I couldn’t keep living like that and just wiping everything because also my hands, I don’t know about your skin, Katy, but my hands are quite sensitive. I’m even allergic to some washing up liquids, which I try to use an excuse, which is why I can’t wash up.

Katy: There are rubber gloves available.

Debbie: I hate rubber gloves; I can’t wear them.

Katy: I had sensitive skin as a child. So, I remember when I did dance shows, my mum, but also my mum’s a bit like this. She wouldn’t let me share like the communal makeup. So, I don’t know if I do have sensitive skin or if my mum just used it as an excuse not to use the communal makeup.

Debbie: Yeah, because there’s also psoriatic arthritis as well, which can affect your skin. So again, I’m quite conscious that there is that type of inflammatory arthritis as well. So, I do try to keep my hands quite, again, clean, but not overly excessive because it can cause damage to your skin as well.

Katy: And you’ve also got to be careful because a little bit of germs is actually good for your immune system, isn’t it? So you’ve got to be careful if everything’s too clean. And I’m always quite conscious with this with children. They need to build up immunity completely.

Debbie: They do. And I think, you know, if you have children or if you ever will, as soon as they go to nursery school, they will pick up everything. And again, it is good for them to do so because, as you say, it builds up that immunity for them as well. But it is, and I think for, you know, when my daughter then started the medications, it was like, oh my gosh, she’s going to get everything. And I was also really panicking for her. And obviously that’s stress for me. And we know that stress and it’s stress awareness month as well. Does stress cause, do you get stress, Katy? And if you do, does that cause inflammatory arthritis?

Katy: I am quite a stressy person. My husband quite often will say you’re going to die of a heart attack because you get overstressed about. So I’m quite good like big things I don’t get that stressed about.

Debbie: Like what? What would you say is a big thing?

Katy: Oh, I don’t know. I guess like my diagnosis. I kind of took it in my stride and kind of got on with it. But let’s say I miss a train by one minute. I turn into an absolute psychopath with everybody around me as to why I’ve missed that train or airport check-in.

Debbie: Oh, that is so stressful.

Katy: I’m an absolute lunatic. And there’s been one occasion I’ve only ever once nearly missed a flight, and it was because the bus took an hour to go two miles down the road. We got the bus to Heathrow, and we ended up having to pick up the train from two miles down the road and go into central London and then get on the Piccadilly line to Heathrow rather than just the bus should on a good day take an hour. And it was my friend’s wedding in Istanbul. It was dreadful. And I do think it does that kind of hyper alert stressiness, I think does affect my inflammatory arthritis. I think if I’ve been mega stressed or panicking about stupid things, like I don’t know, I can’t think of other examples, but it’s always the little stupid things that actually don’t matter in your life.

Debbie: But in that moment, they really do matter.

Katy: Yeah.

Debbie: How do you get yourself out of that to kind of think bigger picture, it really doesn’t matter. Because again, I’m a bit like you. I do get stressed quite a lot over the little things in life.

Katy: And being late is my biggest stressor. Everybody’s fucking late for me. I’m always the person that’s sat in a bar in a restaurant by themselves because every other person can’t actually get their effing shoes on and out the door in time.

Debbie: I can even see you now getting stressed about that, Katy. That is so funny. But I’m the same. I hate being late for everything. And I was even half an hour early for my wedding. The guests weren’t even in the church at the time. So, yeah, I just sat in the car park.

Katy: And I can be late for virtual meetings like this. I do that. But that’s because other people have been late and made me late.

Debbie: Oh, excuses, excuses, Katy. I’ll try to remember that. But, yeah, I do think stress for me does cause flares as well.

Katy: I think just going back to some of the things that we’ve said, do you think sort of in many ways inflammatory arthritis kind of keeps you prisoner because it means, you know, you get sick so you end up in bed, you can’t take your meds, you get sick, you get inflammatory arthritis, you get stressed, and sometimes your inflammatory arthritis can cause you stress because it means you can’t do things, you might let people down. It’s just that whole piece of, you know, you can’t do anything right because whatever you do, quite often a flare will come.

Debbie: Completely. I really think that is so true. I’ve never thought of it as kind of being a prisoner, but I really do agree with that. It is tough because, again, not many people understand, and they really think that you’re overreacting or just being a drama queen. Actually, we’re not. This is the reality of it as well. And, you know, I suppose it can be like a life sentence for people as well.

Katy: It’s longer than most people are married that you’ll have it for, probably. That’s what my dad always says. I’d do longer for life. I mean, no one would last the wrong way round. Less for life.

Debbie: I thought it was my brain that wasn’t working today. But, yeah, it is true.

Katy: Don’t go for murder. Sorry.

Debbie: Oh, what you like. But, yeah, getting back, you know, to this kind of topic and that as well, it’s learning for what works right for you.

Katy: And I think what we’ve both proven today is that everybody’s different. They are. Yes, some people, the drugs lower their immunity, but for some people that isn’t always the case. So, I think you’ve just got to work out what your body does, and that can take years.

Debbie: It can. You know, I’ve had this nearly all my life, and do I really know what works for me? Probably not, because I do try to forget as well that, you know, I was ill. I do have that live in the moment type thing as well. That’s how I generally try to live my life. But it is that holistic approach to everything. Looking after yourself. Try to eat healthily. But, again, when you’re fatigued and when you just have no energy to cook at all, even standing up to try and cook, I couldn’t do that at the weekend. You do just grab, and especially for me because I have to eat, it is those probably naughty things that are in the house, but, you know, they’re treats, and I don’t kind of consume a lot of them because I can’t either. But then, you know, obviously there’s so much talk about gut health and everything as well. This will probably trigger lots of comments on socials. But it is just making sure that you eat healthily. You do everything right. But I think even if you do everything right, you’re still at some point going to get ill. It’s a part of life. Yeah.

Katy: It’s like, you know, it’s a bit of a merry dance that we all lead every day. You know, you’re trying to outwit the inflammatory arthritis and you’re trying to do whatever you can to stop it getting you. It’s that. You’ve got this little devil on your shoulder, haven’t you, permanently kind of gnawing away at your body, gnawing away at what you can and can’t do.

Debbie: Completely. Again, it’s a really good analogy of it because whatever you try to do, it is always there. And how you cope with that, it does take time. Everyone’s different. You know, Katy, I wish I had kind of like an immune system like yours where I didn’t always get ill. But unfortunately, you know, for me, I do. And again, it just proves that everyone on an IA journey is so, so different. And I think that’s a theme, you know, if anything here, you know, resonates with you. Because I think, Katy, we’ve proven we’re at the extremes. I catch everything and you don’t. And there’s a whole spectrum in between. So, thank you so much for listening today. Please do sign up to our newsletter at inflammatoryarthritis.org. We’re also on social media. We are on Blue Sky, Facebook, LinkedIn and Instagram.

We’re going on a short break next week for Easter. We’re not going away together, are we, Katy? Have you booked anything?

Katy: I mean, I wish. But, I mean, I’m heading north. So, I’ll be, you know, chatting in my Yorkshire twang.

Debbie: Excellent. I’ll be trying not to eat the Easter eggs that will be in my house. And then we will be back the week after. But in the meantime, if you do have any questions, please send them in and we can try to answer them on that episode as well. Have a great Easter. Take care, everyone. And goodbye.

Katy: Goodbye. Enjoy the eggs.

In this episode of Inflammatory, Debbie and Katy get real about how even a simple cold can wreak havoc when you’re living with inflammatory arthritis (IA). Debbie opens up about a recent bout of illness that hit her hard and amplified her joint pain (especially in her jaw), flaring up her fibromyalgia, and throwing her reactive hypoglycaemia into chaos. Katy, on the other hand, shares her experience of rarely getting sick despite being on medication, and reflects on the fear and uncertainty she felt early in the COVID pandemic.

Together, they explore how illness can throw off everything—energy levels, medication schedules, even mental health. They talk about the tricky balance between rest and movement, how stress (even over little things) can spark flares, and the lingering emotional impact of being extra cautious during COVID. There’s also a candid discussion around how isolating chronic illness can be, especially when others don’t see or understand what you’re going through and how you can feel like a prisoner in your own body.

Throughout the conversation, Debbie and Katy emphasize that no two journeys with IA are the same—but community, honesty, and listening to your own body can make all the difference.

🎙️ In this episode:

• How minor illnesses can trigger major flares
• The toll of managing multiple conditions at once
• Reactive hypoglycaemia + IA = a tough combo
• Pandemic stress and long-term mental health impacts
• Why self-awareness and a holistic mindset matter

👉 Subscribe to our newsletter at inflammatoryarthritis.org, and follow us on Instagram, Facebook, LinkedIn, and Blue Sky (search for Inflammatory Arthritis). We’ll be back after a short Easter break—see you then!

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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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