Diabetes Discussions: Living with diabetes

Jack [00:00:10]: Welcome to Diabetes Discussions, the brand-new podcast from Diabetes UK.  

[00:00:15]: Each episode we'll be talking to you about the realities of diabetes. Sometimes known as the hidden condition. Millions of us live with it. Millions more misunderstand it. We know diabetes can affect everyone differently. It can play a small part in your life or completely consume it. 

[00:00:33]: We'll be sharing personal experience from those impacted every single day, but who don't let it hold them back.  

[00:00:40]: I'm Jack Woodfield from Diabetes UK, and I'll be guiding us through the conversation and sharing my own experiences of diabetes.  

[00:00:50]: Today we'll be talking about the day-to-day challenges of living with diabetes. 

Roxy [00:00:56]: I've always just jabbed myself wherever I am and I don't think about it and I really should, probably, because I mean, my little sister, bless her when she first saw me do it almost passed out.  

[00:01:04]: I think diabetes can be so isolating if you don't have someone around you who can understand or can at least try to understand the best they can. 

Jack [00:01:16]: Joining me on this episode are Roxy Horner and Katie Lamb. Roxy is a successful model who made her debut in Vogue when she was 17. She was diagnosed with type one diabetes in 2021, a month before her 30th birthday.  

[00:01:29]: And Katie is an artist and full-time volunteer who lives in Preston. She was diagnosed with type one just before her second birthday. Roxy, Katie hi, and welcome to you both.  

Roxy [00:01:38]: Hi.  

Katie [00:01:39] Hi. Thanks for having us.  

Jack [00:01:41]: You're very welcome. Thanks for being here. So, this episode is all about living with diabetes, which is quite a broad topic. So, to start, I want you both, if you can, to give me a one-word answer summarizing what living with diabetes is like for you. 

Jack [00:01:54]: So, for me, as an example, and to give you both a couple of moments to think, I would say it's challenging no matter what type of diabetes someone has or whether you are a parent or a family member of someone living with diabetes, it can be a pretty constant challenge. So, Roxy, what would your word be? 

Roxy [00:02:09]: Think my word would have to be rollercoaster because I think it just sums up our daily lives of the highs and the lows with our blood glucose going up and down all the time and it's just unpredictable, isn't it?  

Jack [00:02:21]: I think that's a great word. Katie, what word would you choose?  

Katie [00:02:23]: I think my word would have to be relentless. You never know what's coming next. A bit like a rollercoaster and there's always something new that's gonna come up around the corner that you have to try and be ready for. So yeah, relentless.  

Jack [00:02:34]: Thanks both. I think those answers really talk to the experience of what it's like living with diabetes and for anyone affected by diabetes. Now, I think it's only right before we carry on to acknowledge that Roxy very recently shared some fantastic news. So, Roxy, what's new in your life?  

Roxy [00:02:50]: So, I am currently pregnant [laughs].  

Jack [00:02:53]: Amazing news.  

Roxy [00:02:54]: Yeah, it's very exciting.  

Katie [00:02:55}]: Congratulations.  

Roxy [00:02:56]: Thank you guys. Yeah, we're very, very excited. Um, obviously that does come with its challenges with living with type one diabetes as if it wasn't hard enough [laughs] with the help being pregnant. 

[00:03:08]: Um, but I'm-I'm managing it, I think. I think I've kind of got the hang of it at the moment. This morning definitely had a little hiccup with just getting the insulin and everything right cause it changes all the time, which is crazy with pregnancy. It's like you think you've got the hang of it and then next week, oh no, you need a bit more insulin, a little bit more background insulin. 

[00:03:26]: It's um, yeah, but as long as you are fully prepared for those things, I think pregnancy is very doable and I've heard lots of success stories so… 

Jack [00:03:35]: Sorry to hear that you've had a bit of a tough morning, but how are you feeling generally?  

Roxy [00:03:38]: Do you know what, I've suffered a lot with the sickness with pregnancy. So, I'm currently 23 weeks pregnant, which is- I think it's five and a half months, which is crazy. And yeah, and I'm still throwing up [laughs], so that's been challenging.  

[00:03:52]: Um, and at the beginning stages with diabetes, I had to learn about the, you know, just upping my insulin, which- because I was only diagnosed two years ago, I wasn't actually very educated on the challenges that people going through pregnancy have with diabetes. 

Jack [00:04:06]: It's funny you mentioned about, um, how much you've learned in the past couple of years because I was going to ask you before your diagnosis, how much did you know, if anything, about diabetes and how would you describe the story of your diagnosis? 

Roxy [00:04:17]: Yeah, you know, in all honesty, I didn't know anything at all. I really didn't, didn't even understand what insulin was. I knew of people with diabetes. I knew I had one friend with type one diabetes, and when I found out I had it, I was just in shock, to be honest cause I knew something was really wrong. I felt so ill, I can't even- I mean, all of you guys with it will know what I mean.   

[00:04:37]: It's like you can’t put it into words, how ill you feel, but, then when I found out, I was like, wow, I didn't realize I could get this. I didn't realize anyone at any age could just get type one diabetes.  

[00:04:47]: Doesn't matter how healthy you are, doesn't matter about any of those things. It's like such a shock. And then when they told me like, oh well you have to eat sugar sometimes cause, if you don't, then you could have a hypo, I was like, but I thought you had to avoid sugar.  

[00:05:01]: That was just so complex for me to understand and it took me so long to understand that and, even now when people ask me, explaining that to them is just so complex, you know, it's such a hard thing to get over.  

[00:05:12]: But yeah, I called up my friend with type one diabetes when I got diagnosed and I was like, I don’t know what I'm doing. I was in hospital and obviously I had all these people telling me what to do, but I still was like, I don't get it. Um, so that really helped me having someone that I knew kind of- cause no one in my family has it. I didn't really have any kind of person to turn to so I was like just turned to this one person and he was amazing. 

[00:05:34]: It was just-, cause I've realized now as well, like the community within type one and probably all of diabetes is just like so amazing. We're all like little community of just like helpful people and I just love that.  

Jack [00:05:45]: It's really interesting to hear your stories as someone diagnosed as a young adult and- and you're right, I think it's such a steep learning curve for anybody, no matter what age they are. But Katie, much like me, you've grown up with diabetes always being a part of your life. So what was it like for you and your family adjusting to life with diabetes as you were growing up?  

Katie [00:06:02]: Yeah, so I was diagnosed just before I turned two, so I can't remember anything about my diagnosis and it was very definitely, you know, my parents that had to deal with that initial, um, shock, which I just think parents of young children with diabetes are absolutely amazing. 

[00:06:17]: I'm in awe of what they're able to do and how much they're able to take on. I think as you grow up at each life stage, you kind of learn a little bit more about diabetes and have to take on a little bit more responsibility. So, I think when I was around seven, I started doing my own injections because I had to be doing that for school. 

[00:06:32]: Um, so that was a big change. That was a lot of responsibility for taking on as a child. And then as you get older, as you get through your teenage years, that becomes more and more important to have that responsibility and independence.  

[00:06:44]: But I've always been really supported in that. I have always had friends with diabetes. I've been really fortunate in the peer support, as you were saying in the community. It took me a long time to find the online community, but as a child I was part of lots of different playgroups of young children with diabetes and, um, friends within clinics that I'd see every three months and we'd have a great time catching up and playing with all of those, uh, toys in the clinic waiting area so that was always really helpful.  

[00:07:08]: And then my family have just been amazing helping me grow up with this and helping me take on that independence as I've grown up with diabetes as well.  

Jack [00:07:17]: You mentioned the switch to managing independently and I could really talk to that as well cause when I moved to university when I was um, 18, my blood sugar control went off a bit of a cliff and just from that switch of the new lifestyle, new routines, and I think what Roxy said earlier, every day is quite unpredictable. Are there any major changes that you've noticed in the past however many years about the way that you manage your diabetes and things that have changed for you?  

Katie [00:07:42]: Yeah, so I think when I was 17 was when I first started using the Libre, and that was what gave me a huge amount of independence with diabetes because I could go to university with my sensor and with my pump, and that really helped give me some security in what I was doing and also my parents some security, um, knowing that I had those warning signs.  

[00:08:04]: I think once you are trying to manage exams and um, a social life with diabetes, that becomes much more complex. Um, and I think whatever that looks like, whatever form that takes for different people, there are so many more challenges that come with that. 

[00:08:18]: But I think it's just working out what works best for you. Um, and how you manage that best for you and how you can prepare in advance as best you can for all of those things that diabetes might throw at you. So I've really tried to keep on top of that and think ahead and, and think what can I do put in place in advance so that I can have the best time at university, so that I can have all of those experiences that everyone else does, but just with a few extra things in place. 

Jack [00:08:41]: I'd love for us to talk about nights out with diabetes in more detail, but I suspect that's a different conversation for a different day [laughs]. Um, you've both kinda touched on the role of family and I think what's interesting for me, as someone with type one, is when family members either on my side or my wife's side have been diagnosed with diabetes and different types. 

[00:08:53]: So namely type two and it's always interesting talking to them about the healthcare advice they've been given and the medication that they're taking. And their stories to me always highlight both the similarities and the differences between different types. And so, we know that living think with diabetes can affect our family, our friends, our loved ones, and our partners too. 

[00:09:15]: And Roxy, you and your partner Jack, have done incredible fundraising work for Diabetes UK and I'd be really interested to hear how Jack, your family and your wider support network reacted following your diagnosis and how they've been able to support you since.  

Roxy [00:09:29]: Yeah, I mean, it was definitely challenging cause I got diagnosed in lockdown and my family live in Australia, so Jack was really the only person I had around me at the time. 

[00:09:37]: And when I was in hospital I was only allowed like a visitor for an hour a day and so I was relying on him to be free for that hour just to kind of give me bit of hope every day. And he really has just been like my biggest support from like the get-go and it's so amazing that he's kind of like stepped up and like helped out with the charity and, you know, that's been such a- an amazing thing for me to do as well, to kind of also just, I don't know, go through this journey and just like accept that I have this, you know, because it's still quite new to me. 

[00:10:06]: But, uh, yeah, I've, I've actually kind of, you know, really enjoyed getting involved with the charity and it's definitely helped me and hopefully so many other people as well, just being a bit more open, you know, with everything but yeah- 

[00:10:17]: Since my parents have kind of like visited and stuff, they're getting an understanding of it, but it's still quite hard to like explain my day-to-day life to them cause they don't see that, I guess. Um, whereas if you get diagnosed as a child, I guess your parents know so much, probably more than a normal person does know about it and um- 

[00:10:34]: Yeah, so I guess for me it's like I- I really like, enjoy educating other people about it for that reason.  

Jack [00:10:40]: Could you tell us whereabouts your parents are based and how often do you get to see them?  

Roxy [00:10:44]: Yeah, so they're based in Brisbane, in Australia. Um, they moved there about 11 years ago, so I grew up here in the UK and then they moved there. And so I would see them like once or twice a year and then obviously lockdown happened and it was like, I didn't see them for like two and a half years, um, throughout my diagnosis.  

[00:10:59]: So it's been difficult, but now every- everyone's flying back to normal and I get to see them. So yeah, it's good that I get to hang out with them again. 

Jack [00:11:06]: That's good. I imagine that was a real challenge being diagnosed in lockdown, just the worst time for so many things to happen. And Katie, going back to the question, I'd like to ask you the same thing, and this has particular relevance for you because you are a young leader for one of our support networks, the Diabetes UK, Our Lives, Our Choices, Our Voices group. So how important is it for you to have those networks of support?  

Katie [00:11:26]: I think it's vital. I think diabetes can be so isolating if you don't have someone around you who can understand or can at least try to understand the best they can. Um, and I think especially as a young person, as we were saying, trying to have this social life is so difficult with diabetes, if you don't have that support network.  

[00:11:45]: So being able to share experiences and learn from each other I think is really important. There's so much experience in lived experience that needs to be shared, and I think coming together as young people with so many different experiences, no two people living with diabetes have the same experience and I think being able to bring those things together and learn from each other is really important.  

[00:12:07]: And especially as young people, I think we're finding that there are lots of topics that are maybe not spoken about in clinic spaces and maybe haven't had as much research done into them as we'd like to have seen. 

[00:12:19]: And by bringing together all of this lived experience, we're actually finding lots of really interesting areas to work on, both as fellow young people, but also with professionals and with researchers, and being able to take that lived experience out of our small networks and into the wider diabetes space. 

Jack [00:12:35]: Huge congratulations on the work you're doing because it's absolutely brilliant. And likewise, Roxy, what you and Jack are doing for the charity is hugely appreciated. You talked about how important everyone's individual experience is and I'd like to ask you both about travel in particular. 

[00:12:49]: So as somebody who's worked from home for over three years and is terrified of taking two young, unpredictable children on holiday, I don't travel much. But Roxy, because of your work, you live a really busy life and a really busy lifestyle that you do so much traveling. So what are some of the things that you have to think about and to prepare for each time you travel? 

Roxy [00:13:10]: Yeah, I guess as well, because I've always travelled, I didn't really think about not traveling. When I got diagnosed, I was just like, I'm just gonna take what I've got and just keep going and just keep trying to do my normal life and figure it out. And that's just worked really well for me because I didn't think twice about it. 

[00:13:28]: I think I had some kind of worries about going through airport security, all these kind of things before I'd ever done it cause I was like, oh my God, I've got these like needles in my bag. I feel like how am I gonna get through the security? But that no one even bats an eyelid, to be honest. And I always carry a letter with me, but like no one's ever asked to see it. 

[00:13:44]: I was always like, right, all I need is passport and then I'll be fine. Now it's like insulin, needles, sweets [laughs], just all these extra things, um, that you have to think about was such a shock. But you, I guess you do get used to it over time. I'm still getting used to it, I suppose. 

[00:14:00]: But yeah, I feel like obviously different climate changes does affect your sugar levels uh, massively as you guys probably know, um, you know, if I'm in the heat, personally I tend to not need as much insulin cause I have more hypos in the heat.  

[00:14:13]: Um, but then some people have it the other way round and they go rocket high. So I think as long as, you know, what your body does when you are in the heat or you are in the cold, you can kind of prepare for that and just always make sure you've got all your stuff with you all the time. Like, I didn't realize that when I first started traveling and I was like, oh, I'll just put it in my suitcase. And I was like, no, no, no. 

[00:14:32]: The insulin will just go off if you put it in your suitcase. Um, so then I've obviously learned very quickly that you just keep it in your, um, your hand luggage, and as long as you've got a doctor's note, it's totally fine.  

Jack [00:14:43]: Yeah, absolutely- and yeah, you're right. The medication part of it is a huge consideration and I suppose diet as well and food. I mean, something I've always thought about and my family has always thought about that have different types of diabetes. It's just knowing what's there. And if you're on quite a, a strict plan for yourself, just making sure that you've got access to food, that you feel like you- you're comfortable eating there. And Katie, what about you? What do you have to think about?  

Katie [00:15:05]: So I, like you, haven't been traveling for a little while, but um, yeah, there are so many things to plan in advance and take into consideration. I remember once when I was really little, I had all of my diabetes supplies in a box cuz as you say, the insulin can't go in the luggage. 

[00:15:22]: And um, on this box it said fun box because I think it was meant to be a children's craft box. And a lovely flight attendant came up to me and she said, oh, what's in your fun box? And I told her the truth. I looked her dead in the eye and I said, needles [laughs], um, I think the poor woman was scarred.   

[00:15:39]: Um, so yeah, it's definitely doable, isn't it? If you plan ahead and take all of those things into consideration. I don't think there's anything to stop you traveling abroad, but um, yeah, lots of extra planning.  

Roxy [00:15:51]: I love that Katie, cause that's just- it comes from a place of like total innocence because you're like obviously. Yeah, yeah. Obviously I've got needles. 

Katie [00:15:59]: Exactly [laughs].  

Jack [00:16:00]: I still find that as well, I dunno about you two, but just in certain areas. If you're in a town centre for example, and you just need to do a quick insulin shot, you do something and you might catch someone's eye and they’re immediately giving you that look like, do I have to call the police right now? 

[00:16:14]: And you have to kind of give that little small gesture of it's okay, it's okay. It's all right. It's absolutely fine, you know.  

Roxy [00;16:19]: I know I've always just jabbed myself wherever I am and I don't think about it, and I really should probably, because I mean, my little sister, bless her when she first saw me do it, almost passed out and I was like, oh, maybe I should start asking people if they're okay with this. 

[00:16:30]: But then I'm like, but then I need this to live so it's such a, catch-22, isn't it? But I do think it's important to just kind of be yourself and do what's best for you at the end of the day. Like, we need this to live.  

Katie [00:16:41]: Absolutely. I think a lot of people are really scared about doing things like that in public and have a real kind of fear about what people see, but I think it's, as you say, it's what we have to do to live and I- I refuse to be ashamed about that and I refuse to kind of hide.  

Roxy [00:16:58]: Totally. 

Katie [00:16:59]: I do something that I have to do. It's just part of who I am, and other people will have to deal with that. If they're uncomfortable, I'm happy for them to look away, but that's, you know, that's part of who I have to be.  

Roxy [00:17:08]: Absolutely.  

Jack [00:17:10]: It's a brilliant attitude to have. Yeah, and one of the things that we are really hoping to do as a charity is to really kind of break down those walls of stigma and those attitudes for people with diabetes, cause we know it can have an impact. So it's something that we're really trying to work on.  

[00:17:23]: Roxy, you're quite open on your social media, about your experiences living with diabetes. Is that because you are reflecting day-to-day life, or is that because you're particularly keen to educate people and raise awareness of living with diabetes?  

Roxy [00:17:36]: Yeah, a bit of both really. I mean, I feel like I want to share more information to people also who don't have diabetes, just so, you know, it's more normalized for everyone. 

[00:17:46]: But also there's so many people who are just constantly getting diagnosed all the time who- who don't know where to turn to and don't have people to follow and you know, all those kind of things and I think that's something that I needed when I first got diagnosed and I feel, I feel like I want to try and be that for other people as well.  

[00:18:02]: But again, it is just part of our daily life and if you know it's- you're very open on social media, that's what it is all about. And that is just something we have to deal with every single day and if I wasn't talking about it, I wouldn't be true to myself.  

Katie [00:18:13]: I think that normalizing is a really big part to tackling stigma as well, and part of that stigma that we all face as people living with diabetes. I think just having it out there in the open is really important and I really value seeing it on your Instagram and everyone else who's kind of talking about it and sharing it as part of their daily lives. I think it goes a long way to getting it out there into the public and changing what it means to be diabetic. 

Roxy [00:18:34]: Absolutely and I loved your page by the way, Katie. Your- all your art and everything like that. I think it brings such a positivity to sometimes our struggles.  

Katie [00:18:43]: [laughs] Thank you.  

Jack [00:19:10]: So one thing that I know about you both is that you both embraced technology as part of managing your diabetes and so the eligibility criteria differs for technology across different types of diabetes. But I can definitely talk to the benefits of discussing tech with my GP and seeing what my options are each year really.  

[00:19:02]: And the technology that I currently use is life changing with the Libre and smart insulin pens. So can you both share your experiences, uh, the pros and sometimes the cons to the tech that you use? Roxy, if you wanna go first.  

Roxy [00:19:13]: I mean, for the first few months I was, um, finger pricking. I think that's what they'd probably teach everyone to do initially anyway, just so you know how to do that. And I don't know, I was personally finger pricking probably too much. I was doing it like 20 times a day just cause I was like, I don't wanna die, you know, I don't- I was just like, I don't know what I'm doing.  

[00:19:31]: I'm, I just need to make sure everything is fine. And I think when I told them that, they were like, okay, that's not normal. You- you don't need to check that many times. And so they quite quickly did, luckily put me onto a CGM. Um, and that has changed my life because I'm not so paranoid, you know, about what my levels are constantly. 

[00:19:50]: So I think for me it's just given me a sense of like, normality, I can just get back to being normal rather than having to quickly prick my finger all the time. Um, and, and that's just on it in- on its own it's just like a game changer.  

Jack [00:20:03]: It's really interesting to hear that cause I was exactly the same. When I was younger, I had one of those little notebooks where you would track your blood sugar levels and- and they- Roxy, you probably don’t have that now? I’m not sure if… 

Roxy [00:20:10]: No.

Jack [00:20:11]: ...they still give those out. But you would have certain columns and I would just be scribbling all over the page just with the extra ones. And you know, I think it's very easy to get into that routine because you need to make sure, well what your blood sugars are at all times really.  

[00:20:25]: Katie, what about you and the technology that you use?  

Katie [00:20:27]: Yeah, so I'm really fortunate. I'm so grateful that I have access to a closed loop system at the moment. So I use the Dexcom and a pump and they can talk to each other and they can suspend my insulin and they can give me corrections and, um, increase my basal rate, which is just incredible. 

[00:20:47]: It sounds like technology from the future. Um, it's just amazing to- to have access to that. So I was on injections and finger pricks until I was around 11 years old. Um, so I did the first nine years with all of that and with those handwritten glucose logs and if you'd missed any out and you had to sit in the carpark of clinic and fill them in and make sure it was all, uh, all done.  

[00:21:07]: Um, and then I was given, yeah, I was given a pump because I was on so many injections. I think I was, you know, 11 and on seven injections a day and it was just getting so difficult to manage and I was really fortunate that my paediatric team sat down with me cause I was really concerned about going on a pump actually. 

[00:21:26]: I had always been on injections. I was comfortable with what they were. They weren't my favourite part of the day. I say it was a bit like brushing my teeth. It wasn't my favourite part of the day, but it was something I had to do and it was just part of taking care of myself. And that was a big change when they wanted to put me on a pump. 

[00:21:40]: And so I'm really glad that they spoke to me about what that meant, about what it was gonna be like, and made sure I was comfortable with that process. Um, so I was given a pump, which was just- that was a huge game changer.  

[00:21:53]: And then I was given the Libre initially, and that was where I actually really struggled with the Libre because of the, similar to what you were just saying about this obsession with the numbers. Uh, all of a sudden I had access to so much data and I just wanted to know all of it, all of the time really. Which was great in some ways because i- it meant that I could make lots of changes, but in other ways I was really struggling to focus at school and I was really struggling to have any, kind of, conversations with my friends because all I was doing all the time was scanning my Libre. 

Roxy [00:22:22]: That's the thing with a Libre, you do have to scan it, don't you?  

Katie [00:22:25]: Yeah so I just could not put it down, which was actually really hard to- to find a- a balance in that because they couldn't tell me to stop looking at it. But also I was just looking at it so much and so I was moved onto a- a different sensor that wasn't a full closed loop, but it, it could suspend my insulin. 

[00:22:43]: And, um, that really helped me. I've really struggled with the alarm fatigue as well. I think when you’re being kept up at night because the alarm's going off every half hour, that can be quite frustrating. So I'm really grateful for the technology I have. But I'm also very aware that it comes with its own challenges and they're really complex challenges and I think they're things that professionals need to be getting ahead of in my mind. 

[00:23:06]: Um, and I think when we're talking about technology, making sure that we don't kind of sell it as this wonderful cure that is all perfect because it comes with its own very real challenges.  

Jack [00:23:15]: Yeah, absolutely. And I'm really sorry to hear about your struggles with the Libre. Um, I mean, Roxy, I'm sure that this might be the case for you as well. It can be frustrating, especially when you try and scan and you get the signal loss. And if you feel like you're going low as well, it might as well come up saying, LOL. Dunno.  

Katie [00:23:31]: Yeah [laughs].  

Jack [00:23:32]: And you just gotta- 

Roxy [00:23:32]: Have a guess.    

Jack [00:23:33]: -gotta go with it. Have a guess [laughs]. Yeah. Which isn't the best, but I think- I think yeah, I really value it. Um, but I'm also really relieved to hear that when you made the transition to the insulin pump, Katie, that you had support for that. And I was going to ask you both about the relationships that you currently have with your healthcare teams.  

[00:23:49]: And it'd be interesting hearing it from the different perspectives of you both depending on- because you've both been diagnosed at different ages. So Roxy, when you were diagnosed, what was your relationship like with your healthcare team and how much and communication are you in with them now?  

Roxy [00:24:01]: Yeah, so my hospital team have been absolutely incredible. I cannot speak any more highly of them. I had struggles with my GP before because I was going backwards and forwards with them, and they were like, you're totally fine. There's nothing wrong with you.  

[00:24:14]: And I felt really crazy. And so I actually felt like I was a hypochondriac. And then I went to hospital. They're like, okay, you're gonna be in bed for a- a while and we can just sort you out, basically. And they were just, yeah, I have so much trust in them and they contacted me so regularly at the beginning stages. 

[00:24:30]: And they continue to do so, especially now I'm pregnant as well. They're just absolutely incredible.  

Jack [00:24:34]: That's brilliant. That's really good to hear. And Katie, what about for you?  

Katie [00:24:37]: So my relationship with my specialist team is absolutely incredible. While I was in paediatrics, I had the same specialist nurse from when I was diagnosed as a toddler all the way up until I left before adults. So the paediatric team really were like a second family to me. They'd always been there.  

[00:24:52]: They'd always been at the end of a phone supporting me through- through all of those different life stages that you go through growing up with type one, and I was really nervous when it came to transition, leaving them and moving into the adult ward. 

[00:25:04]: I'd heard all of these really scary stories about how much more challenging it was in adults, but actually I found the team there are just as incredible. They have real challenges to face in adults.  

[00:25:15]: That funding change is really difficult to- to try and compete with, but it is just amazing to still have a team that really care and who are doing everything in their power to support and empower their patients to make sure that people with diabetes are living the best lives that we can.  

[00:25:31]: I really see that dedication from my team, especially the DSNs and dieticians doing everything they can. They're just amazing and you know, always at the end of a phone call for anything that I need them. 

[00:25:43]: When I was diagnosed, we had more of a problem with the GPs, as you were saying, Roxy, I think maybe the same issues around age but obviously at different ends of that spectrum that we were told I was too young to have diabetes. You know, my mom was just paranoid - all of those kinds of things.  

[00:25:58]: Um, and it wasn't until we got through to kind of getting to that specialist team that we actually got that really great support. 

Jack [00:26:04]: It's good to hear that you've got the relationship that you do now less so with the fact that your mom was challenged about your diagnosis back then, but just staying with HCPs and GPs, whereabouts do you go to for information on diet? Do you feel that diet is something that you can really comfortably discuss with your GP or do you tend to get information on food from elsewhere? 

Roxy [00:26:26]: Yeah, I mean, I-I think probably we all do, I have a dietician who does call me quite regularly and discusses the foods I eat, and obviously they've got access to my CGM and they, if I have a spike in any point of the day, they're like, what did you eat here? And I'm like, I don't know. But, um, I can guess quite often and I'm like, oh yeah, that was porridge again, you know, something like that.  

[00:26:48]: Um, so I guess I've just learned myself, what triggers me to go too high or what doesn't need as much insulin kind of thing. Um, and I guess generally I'm quite naturally healthy, which helped. Due to my career, I guess just kind of quite obsessed with eating healthy. But I do still like my chocolate, so [laughs], um, but I think everything in moderation basically is what they've told me. 

[00:27:10]: You know, as long as, you kind of know how to carb count, all those things, they really help. And I've only just learned to carb count, which is crazy, you know, had it for two years and I've just got some scales.  

[00:27:20]: Um, but that's been such a game changer.  

Jack [00:27:23]: I mean, to be fair, there is an incredible amount to the- in two years since your diagnosis. So, yeah, I- I wouldn’t feel bad about that. Katie, what about you?  

Katie [00:27:31]: Yeah, so carb counting was definitely something to learn as- as I was growing up. It was something that was kind of fed into the education around diabetes. At the moment, so I do see a dietician quite regularly. I didn't for a while because there- I didn't really need to for a long time. 

Katie [00:27:45]: But while I was at university, actually food was something I started to really struggle with was, um, disordered eating. And so, now I see a dietician more regularly just to try and get myself a bit more on track with that and try and find a balance of a healthy relationship with food while still keeping up all of that diabetes management where you do have to weigh out your food and you do have to track everything and keep a really close eye on what you're eating, which is a, a really difficult one to try and find the balance of. 

[00:28:08]: And I'm really grateful that I do have a specialist dietician to help me through that. And so I took part in the DAFNE course, uh, last September and so that was where some of those things were picked up on some of the- the kind of struggles I was having with food.  

[00:28:22]: Um, but that was a really incredible course to really take a deep dive into food and bolusing and figuring out all of those carb counts. That was a really great course, even though I'd been living with diabetes for 19 years already and I thought I, I kind of went into the first one thinking, I know it all already. I've already got this down. And actually there was so much still to learn. There was so much in that course to take on board. So I'm really grateful for that opportunity as well.  

Roxy [00:28:47]: I've been wanting to go on that DAFNE course for so long, um, but there's such a long waiting list for it.  

Katie [00:28:52]: It is really, yeah. It is so hard to get onto. 

Roxy [00:28:56]: But that's good to know that it's a good course.  

Katie [00:28:58]: Yeah, once you do it, it's really great. I think there's- there's plenty you can be doing before that because as I said, I'd had diabetes for 19 years before I had the chance to do that. So, um, it's not the- the kind of be all and end all, but once you do, it's really enlightening to be on that course.  

Jack [00:29:12]: Katie, I'm really sorry to hear about your experiences with disordered eating and, for those listening, we are signposting to lots of advice and information in our episode notes. So please read through those where you'll also find the number for the Diabetes UK helpline. 

[00:29:26]: Um, Katie, for anybody, listening that's not really familiar with the DAFNE course, would you mind just giving like a- just a- a brief explainer about what you actually learn on the course?  

Katie [00:29:34]: Yeah, so DAFNE stands for Dosage Adjustment For Normal Eating. So it's really looking at how you do basal testing. So the one I went on was all about pumps, I don’t, um, what it's like for people on multiple daily injections, but really looking at how to look at your, um, settings within your pump. 

[00:29:51]: How to look at your ratios really closely and really fine tune all of those settings so that when you are taking insulin for food, you’re really making careful calculations that are much better tuned for your kind of life and thinking, learning about the glycaemic index of food and, and how different foods affect you so it's a little bit deeper than just carb counting.  

[00:30:10]: It's really thinking about how those different carbs affect your body. And so keeping a food diary and bringing this back to the group, which is- for me, that was made up of four young people with diabetes, my specialist nurse and specialist dietician. 

[00:30:21]: So you have that peer support as well where you're coming together to talk to each other about your food dairies. And you can, uh, share each other's tips and tricks about different foods, um, that also have that specialist input as well.  

[00:30:34]: And so we did alcohol as well, learning about how that affects your blood sugars and how to manage that the best that you can. Um, and then also advice on hypos and learning how to treat those in the most efficient ways. So, really, really informative course.  

Jack [00:30:51]: Brilliant. And I could really relate to the peer support part of it cause I did DAFNE about 15 years ago and I was best man for one of the guys who was on there...  

Katie [00:30:59]: Oh wow.  

Jack [00:30:59]: For his wedding a couple years later. 

Roxy [00:31:01]: That's so amazing.  

Jack [00:31:32]: ...which was quite surreal. So the final question that I'd like to ask you both, is what's the one piece of advice for anyone listening, no matter what type of diabetes they have or whatever their relationship with diabetes is emotionally or practically, that you would share about living with diabetes? 

Roxy [00:31:19]: I mean, for me personally, it definitely helped getting on those support network groups. Like I went straight onto Facebook and joined all of those kind of community support groups, and I just asked all the questions I had on there. You know, if you couldn't get a hold of your hospital team straight away, like, that was always kind of really helpful for me and just to know that you're not alone.  

[00:31:38]: And also for me, like I follow a bunch of people on Instagram that really helped me too and like lift me up and that kind of thing. Just really make sure you've got good support around you.  

Katie [00:31:48]: I absolutely agree. I think for me it's remembering that you are so much more than diabetes. I've found it really easy to be overwhelmed by the numbers and think that that is really what defines me, but knowing that you're made to be so much more than this and the numbers don't define you, there's no moral value in those numbers.  

[00:32:07]: They don't make you a good or bad person. They are just information about what your body needs and its information for you to use, but it does not have to define you, and it does not have to control your life. 

Jack [00:32:19]: I think that's brilliant advice all around. Thank you both Roxy and Katie. It's been absolutely fantastic talking to you both today. Thank you for joining us on the podcast and for sharing your stories about living with diabetes.  Thank you so much.  

Roxy [00:32:31]: Thank you.  

Katie [00:32:32]: Thank you for having us. 

Jack [00:32:38]: That's all for this episode of Diabetes Discussions. We hope the conversation has helped you with your own experiences of living with or supporting someone with diabetes. For more advice and support, search Diabetes UK online, or check out the information and links in the episode notes.  

[00:32:54]: Don't forget to hit subscribe so you never miss an episode. And if you've liked what you've heard, please rate and review to help others discover the podcast. Thanks for listening. See you next time.