Episode 3 – Our new reality

Inflammatory! Episode 3 Our new reality
 
Intro: Being diagnosed with inflammatory arthritis is such a difficult moment. But what happens in the weeks and months after?
 
Inflammatory with Debbie Wilson and Katy Pieris. Navigating life with inflammatory arthritis.

Debbie: Hello and welcome to this latest episode of Inflammatory with Debbie and Katy. Before we start, I just want to say a big thank you to all of you who’ve been in touch with us, whether it’s our social media, our website, inflammatoryarthritis.org, or by leaving reviews and ratings on Spotify and Apple. We’ve been a bit blown away, so thank you.

And our next episode is a Q&A and we can’t do the A’s without the Q’s. So please follow the links in the show notes to our website where you can send us a question or even leave us a voice note and then you may be part of episode four. 

Coming up shortly, we’ll look at what happened for both of us after the day we won’t forget our diagnosis and what the impact was on everyone around us.
But Katy, how’s your week been? 

Katy: So, my week has been a little bit busy, to be honest, for January. I started a new job earlier this month. I was away at the weekend for a 40th and then today my son’s been crushing all of my work Zoom calls because he’s off sick with a bit of a kind of temperature, sore throat, those kinds of things that little kids get.
How about yourself, Debbie? 

Debbie: Oh no, I’m sorry to hear about your son. Oh, nightmare, especially, yeah, working from home and Zoom calls because I don’t know about you, but they always come in when they want food or drink and it’s always the worst timing. Yeah, my week’s been okay, actually.
I was walking my dog and it’s been so icy. I really don’t like the cold. And because she’s nearly nine, I’m a bit concerned about her slipping on the ice and then having to go to a vet.
So I thought, I was very conscious of her, but I didn’t see the black ice and I just fell and I really just fell on my back and slight concussion, I think, on my head. But it wasn’t too bad. But a couple of days after that, my hip, I think it’s my arthritis in my hip, it was so, so sore.
And I kind of forgot how bad it can be because I went shopping with my husband and it’s the stairs, it’s kind of not wanting to go into lifts because everyone will be staring at you, you know, you’re not old or you don’t have a push chair, why are you in a lift? So, I was kind of, yeah, I’m quite conscious about it when I’m limping and I was just in so much pain, but it wasn’t too bad we got through it all and I just came home and kind of then sort of rested a little bit and that. But yes, it’s just, you know, one of those things, which is why I don’t like going out when it’s too cold because I generally fall.
But never mind, that’s my day, that’s my week.

Katy: And what do you do to kind of manage that aside from resting? 

Debbie: I did, it gets quite stiff quite quickly, so I do make sure I do little bits of movements here and there, just kind of not putting any weight on it, like lying back and doing just some stretches with it. I do actually do Pilates twice a week, so I kind of think it’s helping a little bit, helps strengthen it, it’s just don’t fall over, I think is the answer to that as well.

Katy: Or maybe buy some grippier shoes?  

Debbie: Yeah, well, the thing is I was wearing my big walking boots because they were grippy, but obviously just I think anything, unless they’re kind of like ice picks instead of when you’re walking on the ice, nothing’s great, but never mind, that’s it. But she had a great walk, you know, she loved it all, but never mind.

Debbie: So, from an IA point of view, how’s your week been? 

Katy: So, I’ve been really well actually, aside from kind of the cold, occasionally I get little aches and pains sometimes when it’s a little bit chillier outside.
This week was my bi-weekly injection, which sort of nine years into doing this, I still really struggle and get a little bit anxious. Luckily, mine is one of those sort of self-administering devices, but it’s still, I have to do a big kind of breathing countdown from 10 before I put it in and I have to be completely alone. So, I always do it when I’ve gone to bed, but that’s still something that I still find very troubling.

Debbie: Yeah, I don’t think you’re alone in that at all. With my one, it’s quite different. Again, the subcut, so, you know, that you can administer at home is what children have as well and obviously their parents have to do that and I’ve had to do it for my daughter quite a few times now. And the ones that I’ve got though, I can’t do it myself because it’s a push, you just have to really push it in and I have to do it into my stomach and I can’t, my husband has to do it because my stomach just keeps, if you’re pushing against your stomach, you naturally just keep going back. So, yeah, it’s tricky. So, my husband has to do that, and he hates it because it really does, it stings. I know some of them don’t, but some of them do and that it’s just, you know, it’s that five seconds of actual pain, but then once you’ve kind of got over that, it’s kind of fine and then I go to bed. Do you do yours in the evening? 

Katy: Yes, I do mine just before I go to bed, and I’ve never been able to do it into my stomach. I’ve always had to do it into my thighs because I just find the stomach, for some reason, mentally, I just can’t do it.

Debbie: No, I get that. It just really didn’t work in my leg and I used to be on two medications. So, one was in my leg and then one was in my stomach and I’ve just continued doing it in my stomach and yeah, just getting my husband to do it.
But I must admit, when I had to do my daughter’s though, that was, it was horrendous. It’s just, it goes against all your parental instincts, even though you give children Calpol and other neurofen, obviously not naming names, medical names, but that’s just what we do for children. But when you have to do injections, it’s just really, really heartbreaking.
It’s the balancing act of knowing that it will do them good, which is why we’re doing it. But it’s just also hard to actually physically do it to your child. It’s just, yeah, it’s not natural to do it, but we got through it.

So, she’s doing okay now as well. It’s just, for any parents out there listening as well, I get it. It’s not nice, but you just realize that actually you’re doing it for the right reasons and hopefully the medications can then really help your child to get back to their childhood and everything that they should be doing.
But anyway, getting back to what we are going to be talking about today, mainly, is the days after our diagnosis. In the last episode, it was the day that we’d never forget talking about that day. And Katy, I still remember, and I have it so vividly that you went to the wrong hospital.

I think that’s just great. It can happen. But after you’ve had that diagnosis and you only just moved in with your boyfriend, what was your reaction when you went home, and you told him?

Katy: It was really difficult because at 28 years old, you don’t expect to be telling people that you’ve just been diagnosed with a form of arthritis. I myself had the same thoughts about arthritis before I was diagnosed that it is mainly your grandma or your grandfather that’s diagnosed with it. So, there wasn’t really much awareness with myself that it was something that I could have. You’re also sent home from the hospital with a lot of leaflets to read about potential medications that you can go on.
So, I had so much information to try and kind of understand myself, but also to share with people. And I’d managed to have the issue of going to the wrong hospital. And it also meant everything just felt like really overwhelming, kind of having to think about what next.
So, my boyfriend, he came to the next appointment with me, which was in two weeks. And at that point, we had a question asked of us of, are you planning to have children, which was a discussion that we’d not have between us. We’d just moved in.

So, we kind of looked at each other and didn’t really know what to say. But we both kind of said yes, but not right now, which meant some of the medications we could progress with, because there’s many medications that you, there’s strict rules around being able to get pregnant. And there’s sort of specific planning and timelines that you have to put in place to kind of plan a pregnancy.
So, it was quite key for them to understand exactly what our thoughts were. Then going alongside that, it was all the kind of practical things in the house. So, not being able to open jars, not being able to get into the shower, because it was a bathtub with a shower.

So, me, my boyfriend and my sister, I do remember we had quite a lot of jokes about needing to, it’s not really that funny, but it was to kind of put a little door in the bath to allow me to get in and out, because I struggled to climb in and out of the bath. So, it’s those little practicalities that can be quite tricky. And for you, Debbie, when your daughter was diagnosed, how was that for you? 

Debbie: Yeah, it was very, very tricky.
But just coming back quickly to kind of what you were saying about the bath and everything. I think it’s because all those adverts show it for older people, they don’t show it for people our age. And actually, this is when sometimes we do need it. If you’re marketing teams out there, sometimes anyone of any age needs those kinds of things in their lives to make their lives that little bit easier. So, please stop marketing it to older people. But yeah, so for my daughter, when she was diagnosed, it was that initial impact.
I think I mentioned it in the last episode that my youngest, her sibling was then really, really upset because we had gone through so much change in our lives because of my scleritis diagnosis and then me going on long-term treatment that she just really thought that her sister is going to end up like me. I was then a different mum to how I was a few years before. And I think it hit her quite hard.
And also for my husband as well, knowing that it’s not just his wife that’s now got this disease and having a daughter as well. And actually, what impact does that have? Because I suppose he’s lived with me, we’ve been together for a period, now we’ve been together 25 years. And before that, he knew what my day-to-day life was.
I could kind of deal with it. I could kind of work with it. But then having to have my daughter with it, it was just like, oh my gosh, how are we going to change? What do we need to change for her? And I was the one that went and spoke to the schools because obviously, I’ve been there with my schooling.

But I’d actually had a conversation recently with my mum and I didn’t realise this and I was trying not to get emotional when she spoke about it. Because obviously being so young, I don’t remember. But after my diagnosis, my mum went to the school and told them, because it was generally just in my wrists. And what you do in primary school is you generally hold hands with the classmates. So, you line up when you go to assembly and all of that, and even in PE. And my mum was telling the teachers, well, she can’t hold hands. She’ll be in a lot of pain. And I think they just looked at her and it was just like, well, she’ll be fine. We don’t believe you.
She’s probably faking it. And I think that kind of knocked my mum’s confidence a little bit. And thinking about it from my perspective, it was like, yes, it would have knocked my confidence as well as a parent. Why would you not believe us? I think if we’re going to make something up, we’d make something up a lot better than having arthritis. It is what it is. And I just didn’t realise at the time. And so, when my mum was telling me this on the phone, I just did want to just hug her and say, you did all you could. We were given no information. So, even as parents and people living with it, we weren’t told how to live with it. So, how the hell could we then go and tell the teachers? Whereas nowadays, I did go straight away with the information to the teachers for my daughter. And I made sure that they knew exactly what she needed, what she could do, what she couldn’t do. And they were very supportive.

But I know schools, I think I’ve mentioned it before, are very potluck really, whether you do get someone who is supportive or not. But there was one time, probably a couple of years ago, this is when some appointments have now turned into phone calls. So, my daughter went into school in the morning, and she had a test. So, she’s adamant that she wanted to do the test. But she had to leave that lesson five minutes early. So, I went and picked her up and she came down to the reception. She was livid. She was so angry. And I was like, oh my gosh, what’s wrong? She goes, you wouldn’t believe this. I’ve been threatened with detention for leaving the lesson time early. And I was like, right, I think the receptionist could see that I was not going to take this lying down. But her appointment was more important.

So, we took her home, had the appointment. We came back into school. And by this point, I’d already kind of emailed the head teacher to say, what is going on? This is not right at all. And he did then phone me in the afternoon, very apologetic. He said, you’re going to speak to the teacher. But I said, you don’t have to apologize to me. You have to apologize to my daughter as well. This has really impacted on her. She doesn’t want to have hospital appointments, but it’s part of what she has to go through.
And she would have rather been in school. So, why treat children like that? And I think sometimes it still does happen across the school. But for me, it’s also, I feel for those parents who don’t want to advocate or don’t know how to advocate for their children to say, no, you can’t do this.

But you really can. I think, again, any parents out there, really, you know your child better than anyone else. And if you feel that something isn’t right, just speak up is the main thing that I would say.
But also, there is a lot of appointments that go on with having inflammatory arthritis. Katie, you were working at the time as well when you were diagnosed. How did that, all the appointments and everything, how did that impact your work? 

Katy: Found it really hard to manage. I think I’ve mentioned previously that I did have a really good boss at the time. So, once I was diagnosed, I let her know straight away about the diagnosis. And then we had a little bit of flexible kind of working or agile working, I guess would be the term, where we did have the ability to work from home.

So, I was able to kind of try and plan my working day around my appointments. You can’t plan your appointments around your working day because you have zero control of when they will be. The other thing was with the medication that I was put on first, which most people will be put on this medication to begin with, there was, I think it was weekly or every other week, I had to go in for a blood test. And pre-COVID, blood tests was basically, it was open from 7.30 and closed maybe at 3pm. So, what I would do was to go try and get to the hospital by 7.30. But already by then, there was a huge queue and you could be waiting for a blood test for an hour, an hour and a half. Then I’d need to get into the office in London whilst also being kind of panicked about how that’s going to impact what will I have missed at work? What will I not have been able to do?  Will I be able to make this call, this meeting? So, it’s all that that just kind of builds up and makes your life admin kind of absolutely kind of balloons as soon as you’re given this type of diagnosis.
And it wasn’t just the blood tests, it was also having to go in for an appointment on a month, it was about a monthly basis. And then it’s also the side effects of the medications and being able to manage those. One of the medications I used to feel really nauseous after it would also give me fatigue alongside what you feel from the actual disease. So, everything was about also planning. So, that medication that made me nauseous, I’d try and take on a Friday or Saturday so that I wasn’t feeling ill when I was going into work. But you still were feeling ill from the symptoms of the inflammatory arthritis as well.

So, it’s just that complete combined issue and you’ve always got the impact of not knowing how you’re going to feel the next day when you wake up and how you might feel throughout the rest of the day. So, it’s really, really tricky and I can’t imagine what it’s like for a child going to school who potentially finds it really hard to explain to a teacher. So, Debbie, in terms of your daughter, how do you manage that in terms of helping her manage her weekend and day-to-day life?

Debbie: Yeah, good question. We took the medication on a Friday evening. So, the side effects of that medication didn’t happen during her schooling but obviously impacted on kind of her weekend. And she was 11 when she was diagnosed. So, she was transitioning then into secondary school and I suppose for secondary school, it’s slightly different because you have lockers where you can go put your bags and your books and everything. So, it is slightly easier. And also, it’s hard at that time because they want to be independent as well. And obviously, me telling her everything is just like, oh, how is things? And she was just like, just don’t ask me, mum. I will tell you if things are bad. And actually now, we can just look at each other and we just know whether we’re having a good day or bad day.

And so, she’s kind of, I think, with just how we just live and just how we just kind of adapt with everything as well. She’s just learned, I think, through me. And she’s really kind of, it did take her a while to process it, the diagnosis, especially just because of what I had gone through, especially the two years before.
It was a very tough time for all of us. And I think she felt guilty. I felt guilty.
And it was just a cycle, I think, of just both of us feeling guilty and just wanting to hug each other and go, I’m so sorry. But actually, we can’t help it. We’ve got these diseases. So, actually, how can we learn to live with each other with these diseases, but also making sure that her sister, my youngest, wasn’t excluded as well. And I suppose the other (18:40) thing with my youngest having hypermobility was that they had physio appointments together, because they had the same joint pains in the same joints as well. So that really helped.
So they went to the same physios and then we all did physio exercises together. We tried to make it more of a game, a bit more of a fun, because it is a battle, you know, trying to get their meds in them and also trying to make sure that everything else in life that goes with it, the exercise, any physical movement is so good for your joints that actually, how can we make it fun? And how can we get everyone involved in that?
Katy: That all sounds really, really tough to deal with. And I think let’s not beat around the bush. It’s really, really shit when you’re first given this diagnosis. And something I’m conscious we haven’t even touched on yet is the emotional side. So how was that in your household, Debbie?

Debbie: Yeah, very tough. I think just from a parent,  you know, because I have so many different hats on when it comes to IA and I kind of think from a parent’s side, just the amount of guilt that I felt and I did actually become depressed because of it, because I just didn’t want, this was my worst nightmare to happen, my daughter getting diagnosed with the condition I had. And it did take me a while to kind of get through that. And I think for her as well, and actually the emotional side for her and realizing that, you know, again, history was repeating itself, which seemed very strange because she had to give up gymnastics because before the meds kicked in, her wrists and her ankles were quite weak as well. And so she probably could do it, but not to the level that she was at before. And it was just kind of like, why would I want to do that? I can’t do what I want to do. So she kind of then gave that up whilst again, waiting for the medication to kick in.

Because also we need to remember is the medications that we are put on can take up to about 12 weeks for it actually to really kick in. And so it is that time of the diagnosis, nothing seems to be working. Why am I going through this? But actually it just give it that time and it can.
So when she then kind of, the meds were kind of then working for her, it was trying to then go, okay, what else can we do? And I think actually if you ever read my blog about my childhood, I then found another passion in life. I then went and played the piano, which I didn’t realize at the time, amazing physio for your wrist. So that was great. And then she found another passion. She went kayaking with her father and she absolutely loved it. And she was, you know, aced it.
She was really, really good at it as well. So again, if there is any benefits to having this disease, it is actually life pushes you to different ways that you didn’t realize that actually you can go do other things and you can ace them as well. But that’s kind of from my perspective.
What about you Katy, because obviously being diagnosed later in life, how did you find the emotional side of the diagnosis?

Katy:I don’t think I really dealt with that, the emotional side for many, many years, to be honest, because I think when you’re in the thick of it, my focus was trying to get back to being me. So the way I kind of went through that process was by signing up for the London Marathon, which I absolutely wouldn’t, I wouldn’t advise to anyone that maybe hasn’t run or doesn’t do much exercise pre-diagnosis. But obviously, if you feel you’re up to it, absolutely.

But I just wanted to get back to kind of sport, exercise. So, I kind of threw myself into the deep end and registered for the London Marathon in the November after I was diagnosed in the July. And then I also stupidly signed up to be a volunteer dancer in the Olympic opening ceremony.
I can absolutely say both of those things combined was the stupidest thing I’ve probably done, but I wouldn’t change it for the world. The first Olympics rehearsal was the day before the marathon. So, I did nine hours of dancing, went to my hotel room, woke up the next day and ran the marathon.
Awful, but brilliant all at the same time. So, I really want to get into your brain to actually work out what made you think you could then run a marathon. Because I think if anyone ever has that diagnosis, that’ll be the last thing ever on their list to do.

So yeah, amazing. And it’s just kind of, I suppose, as you were saying, it’s trying to get back to that loss of identity. You were doing the sport and everything, and this was kind of what was you.
And I suppose that’s kind of what this disease can take away from you is that part of what makes you, you. But actually, it’s kind of how you then process and adapt. And it can make you, it shapes you into a different person, I think.
So, I just still can’t get over you running a marathon. I’ve always wanted to, but I know that my joints would not cope with it one bit. I’ve done a few 5Ks, but a marathon, that’s just, Katie, you’re mad.

Katy: I would completely agree. And I have to say it was because the consultant said to me, you probably shouldn’t be running. So, my head just went, I’ll show you.

Debbie: Were you quite rebellious as a child?

Katy: Yes, I’m child number three. So, I don’t follow any rules.

Debbie: I think it’s coming out. But yeah, I think most people just then wouldn’t run, but that’s impressive. Would you do another one though?

Katy: I’ve done two since, I’ve done three in total, but I think my marathon days are done if I want to stay married.

Debbie: Does he not run with you?

Katy: No, no, because I get too competitive, try to keep up with him, and then I get upset if I lose. 

Debbie: Oh, okay. What are you like down the gym? Are you competitive next to someone on a treadmill?  

Katy: In a class, yes. I don’t run on treadmills. I find it really boring. But with weights, I’m not really strong enough to be competitive.

Debbie: Oh, okay. So now I am quite competitive. Yeah, we should probably do some runs together, but not a marathon.
Yeah, because I must admit on a treadmill I do try and compete with the person next to me, which is why I’m not telling my gym I’m doing this. 

Katy: But ultimately, we know our body’s best and it’s about choosing what makes us feel right and good.

Debbie: Yeah, I think what this is showing is that we’re barely touching the surface with IA and actually how it really impacts us as people and everyone around us. So don’t forget, next week is our Q&A session. So please do send us questions, whether it’s IA related, or you just want to get to know us a little bit better.
Please go to our website where you can submit the questions, and you can also leave us a voice note. If you get a chance, please do leave us a review and ratings on Apple and Spotify. You can also sign up for our newsletters at inflammatoryarthritis.org. We’ll speak to you again in a week for our first Q&A session.
Until then, thanks for listening and goodbye.

Katy: Goodbye.

Episode 3 Our new reality

In this latest episode of Inflammatory! brought to you by Inflammatory Arthritis UK, Debbie and Katy cover the immediate effect their IA diagnosis had on them, their families, the number of hospital appointments, effects of medications and their emotional reaction.

They explore in more detail the impact on Katy’s work life, having to plan work around the number of appointments. Having conversations with her boyfriend and doctors about whether they wanted children in the future, something they had not even discussed in private. The impact on schooling with Debbie’s diagnosis and that Debbie didn’t realise at the time, how badly her teachers treated her mum and more recently cover an incident at Debbie’s daughter school.

They discuss openly how Katy took years to process the emotional side of the diagnosis, but her immediate reaction was to sign up to the London Marathon and a dancer at the Olympics games.  Debbie shares the impact her daughter’s diagnosis had on her husband and her youngest child. But even though history was repeating itself as both Debbie and her daughter had to give up gymnastics after their diagnosis, they both found new passions in life. Covered also in Debbie’s blog https://inflammatoryarthritis.org/blogs/

Next week’s episode is our first Q&A session, where you can submit questions or leave us a voice note, through our website https://inflammatoryarthritis.org/podcast-2/ and we can play the recordings in the podcast. They can be IA related or just wanting to get to know us better. We look forward to hearing you from you.

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, 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 https://inflammatoryarthritis.org/