Diabetes Discussions: Sleep

Jack [00:10:00]: Welcome to Diabetes Discussions, the brand-new podcast from Diabetes UK. Each episode, we'll be talking to you about the realities of diabetes, sometimes known as the hidden condition. 

[00:00:22]: 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. 

[00:00:32]: We'll be sharing personal experiences from those impacted every single day, but who don't let it hold them back. I'm Jack Woodfield from Diabetes UK, and I'll be guiding us through the conversation and sharing my own stories of living with diabetes. 
 
[00:00:46]: Today, we'll be talking about sleep, as well as the many ways living with diabetes can be life-changing, from food to technology to how it can impact our jobs.
  
Nina [00:00:57]: It was a horrific thing where literally every two, three hours, we'd wake up.  

Iain [00:01:02]: I don't get home till about 10 past 11. And of course, eating at that point is the worst thing you can do. But I either give the radio up or I don't. And I can't, it's the best job I've ever had. I don't want to give it up. I love it. 

Jack [00:01:18]: Getting enough sleep is important for our health and wellbeing. But getting a good night's rest can be easier said than done for people living with or affected by diabetes. High and low blood sugar levels can make it harder to sleep, while a study we funded led by the University of Bristol last year revealed that insomnia may cause high blood sugar levels and directly increase someone's risk of developing type 2 diabetes. 

[00:01:38]: We also know that certain complications such as nerve damage and foot pain can make it difficult to sleep. And you can learn more about how sleep can impact diabetes and vice versa on our website, which includes some tips to improve the quality of your sleep. 

[00:01:50]: So, joining me on this episode to discuss diabetes and sleep are Nina Wadia OBE and Iain Dale. Nina is an award-winning actress and comedian who is well known for her roles in the BBC shows EastEnders, Goodness Gracious Me and Citizen Khan. Her son, Aidan, was aged 10 when he was diagnosed with type 1 diabetes in 2017.  

[00:02:09]: And Iain is an award-winning broadcaster, author, podcast host and political commentator who has worked for the radio station LBC since 2010. He was diagnosed with type 2 diabetes in 2007.  

[00:02:20]: Nina and Iain are also both supporters of Diabetes UK's work and have worked with us for several years. Nina, Iain, hello and a huge welcome to you both.  

Iain [00:02:28]: Hi

Nina [00:02:28]: Hello.  

Jack [00:02:29]: So, thank you so much for joining us today. And to start, could you both talk us through your relationships with diabetes. So firstly, Nina, could you tell us the story of how your son was diagnosed and how significantly this experience changed your family's lives?  

Nina [00:02:45]: Sure, so my son Aidan was, uh, 10 years old. Uh, we were on holiday in Thailand, actually coming back, and, uh, he'd been ill a few months prior with a virus at school and he threw up a lot over the odd weeks between then and the diagnosis. 

[00:03:03]: Um, but we didn't connect the two at the time. But then when we were finally coming back from our holiday on the flight, uh, he threw up where he had to go to the toilet and then he collapsed in his seat and his eyes rolled into the back of his head. And I genuinely thought something very fatal was about to happen. 

[00:03:23]: And because we didn't know that actually he had type one at this point. So, he was rushed to hospital, um, within, you know, one prick of the finger, they said, uh, did you not know he's type one? And I remember thinking type one, what- what are you talking about? Because of course I'd heard of diabetes, but I didn't realize there was such a distinction because, you know, diabetes was not part of the conversation of our family up to that point.  

[00:03:48]: So, we had to learn very quickly what that was. And my heart sank. I literally, you know, I- I collapsed down to my knees. I was very, very, uh, shaken up. I didn't know what this meant for us as a family because, you know, we were plodding along, two boy, four children, not causing anyone any problems. 

[00:04:08]: And, you know, suddenly this thing was brought to our attention. 
And, um, it was terrifying, genuinely. I think a new diagnosis like that in a family where you don't understand the condition can be very, very frightening. But then we had a lovely senior consultant who took us under his wing. Dr. Wasouf, and this was at St. Mary's in Paddington. And he said, I promise you six months from now, you will come back and you'll say to me, it's okay, this is manageable because I promise you that, you know, he says there's so much out there to help you. And he was right.  

[00:04:41]: You know, we- we found tech, um, not immediately took about a year and a half, but within the first six months, he was managing with injecting himself and getting used to that. In fact, he was injecting himself day three because he said the nurse was taking too long to calculate the carbs. [Laughs]. So, he said, can I just inject myself? 

[00:05:03]: Like we look back on it now and think it was- it was quite a funny thing where he'd take the needle very close to his thigh and go, I'm going to do it. I'm going to do it. And then he'd go, no, I can't do it. I can't do it. And he did this about three or four times until he finally actually closed his eyes and jabbed himself at which point, I went, don't do that. You could have jabbed your finger.[Laughs].  

[00:05:22]: Um, but yeah, very resilient. Um, we're- we're lucky to have had a child that actually, it was like, okay, this is the problem, so let me solve it kind of thing. But yeah, since then it's, it's been a thing. [Laughs].
 
Jack [00:05:37]: It is a rollercoaster, the diagnosis, and it can be so scary. And as you said, not just the initial diagnosis, but then processing all that information that you've then got to take on board and what you've got to do going forward. 

[00:05:48]: And you touched on tech there, and we're going to come back to tech later because it's a really interesting part of the conversation about sleep. Iain, could you tell us the story of how you were diagnosed with type 2 diabetes, and how does diabetes affect your life? 

Iain [00:06:01]: Well, it's not quite so dramatic as Nina's story, but in 2005, I was standing in the general election in North Norfolk, and I remember there was a mobile sort of diabetes testing unit, and I went in, as you do, sort of as the candidate, you go and do these things, and I had no sort of prior premonition that I would be diabetic, even though I have an incredibly sweet tooth and I eat all the wrong things and drink all the wrong things.
 
[00:06:29]: Anyway, it showed a very, very high reading, but they put this down to the fact that I'd eaten a hamburger about half an hour before, so I didn't really think anything of it. And then a couple of years later, I started to get all the classic signs of being a type 2 diabetic. I wasn't tired particularly, but I would go to the toilet two or three times in the night. 

[00:06:50]: If I went to a football match, I'd have to go at half time, otherwise I knew I wouldn't make it home. And there was a sort of tingling in my leg. So, I went to the doctor and, I mean, I kind of knew that I- I suppose I'd self-diagnosed at that point. And I really did make an effort to keep it under control. 

[00:07:08]: Um, but I'm a sort of all or nothing person. Like, for example, I love Mars bars. I love any type of sweets. But I couldn't say, well, okay, I won't have five Mars bars a week. I'll have two or one. I just have to cut it all out completely. And I can do that. And I did that for two years. Um, I saw a dietitian who told me that I had to eat all the things I don't like. 

[00:07:29]: I don't like vegetables particularly. I like all of the foods that I shouldn't like. And that's really been at the centre of my struggle with it ever since. And I'm now at a point where I'm having laser surgery for my eyes. I actually thought I was going blind the other day. I was driving up the M1 to a literary festival and I suddenly realized I couldn't see properly out of my right eye. 

[00:07:51]: It was like there was a mist over my eye. Well, it's too late to turn back, so I had to keep going. And to cut a long story short, I had to see a private doctor in the end because I couldn't see anyone in my normal hospital for a month. And I thought, well, I don't know whether this is diabetes related or not. It could have been something completely different. 

[00:08:09]: Now this was back in middle of April, but I can drive again. But I still, I know that there's something still not quite right. And I've got another appointment actually on Friday. So that's been quite worrying because I mean, I remember during that drive thinking, oh my God, what if I am going blind or even just blind in one eye? 

[00:08:27]: I mean, not being able to drive would be like having my arm cut off for me. And I mean, it would just be awful. And, I mean, if you obviously went blind, that would be life changing. So, I go from time to time, I make a real effort. I wear the FreeStyle Libre and I do measure my blood sugars. And I've got to a point where I know what they'll be. 

[00:08:47]: I can predict the reading, but for some reason, the way my brain works, it still doesn't stop me eating things that I shouldn't eat. And I- I wish I could, I wish I had the self-discipline to do it, but for example, in the three months up to April, my blood sugars were in range for 90% of the time. 

[00:09:09]: And I was really proud of myself that I'd managed to do that. And then, this is gonna sound so ridiculous, I broke my hip in a fall and I- I then had to be in hospital for five days and had to have a hip replacement. And that completely. messed everything up. You'd think in a hospital, your blood sugars would be fine, but the food they give you in the hospital...
 
[00:09:29]: I mean, it's just utterly disgusting anyway, but it's the wrong food and the wrong drinks and I kept saying no I can't really, I shouldn't really eat this and my blood sugars went haywire. And they wouldn't let me inject the insulin that I knew I had to inject. I have two types of insulin the long-lasting and the rapid kind so when the blood sugars go up I inject myself with a rapid kind and I know what dose I need to do that. But they said no you can only have four units, well, I knew I needed 20. 

[00:09:59]: So of course, what happens instead of being in range 90% of the time, I was in range for 16% of the time. And in the end, I had to say to the doctors, can you please tell these nurses to let me do it myself? I've been doing it for 15 years. And in the end, they relented, but I mean, this was back in May and I've struggled with it because I have a job where I'm presenting on the radio between seven and 10 in the evening. 

[00:10:24]: So, I don't get home till about 10 past 11. And of course, eating at that point is the worst thing you can do. But I either give the radio up or I don't. And I can't, it's the best job I've ever had. I don't want to give it up. I love it. So that's a real dilemma at the moment.  

Jack [00:10:41]: Firstly, good luck for your appointment on Friday. I hope that goes well. And I think it's really pertinent, the fact that you broke your hip is obviously really, really terrible and it is life events such as that, that can throw everything completely off track. You can get into a really good routine with things. So, I have type one myself and you know, you can go through weeks and, as you did, and you- you got into a really good stage with your blood sugar levels. Something comes along and it just throws it off track. 

[00:11:05]: So, we're talking about sleep today and we know that it can be a real problem for people living with or affected by diabetes. And Nina, going back to you, you've spoken previously about the challenges that your family faced with sleep following Aidan's diagnosis, including you and your husband waking up regularly to check his blood sugar levels during the night. 

[00:11:23]: How much of a challenge was this? And also, how much sleep were you both losing yourself at the time as well? 

Nina [00:11:30]: Well, I've always been a bit of an insomniac. I have this brain that needs about 4 hours um, and then I just wake up. And so, I've always had that, but this took it to another level. It was actually a casual comment by a lady who was at the hospital, who was a mum of another child with type one, who said to me, oh, I'm so sorry about your diagnosis, but you do know now you'll never sleep again. And I said, I'm sorry? 

[00:11:59]: And she said, well, you know, he could hypo in the middle of the night and die so…And it was said so casually that I kind of went, what? And she goes, well, yeah, he could, he could hypo or, you know, he could go really, really high and you might not do anything about it in time. And, you know, it frightened me. 

[00:12:16]: And as a mother hearing that if I don't wake up in time, my child could die. Of course, it means I'm never going to sleep again. So, I did this thing that was told to me to do, which was go into his room and, you know, just, you have to prick his finger maybe every three or four hours, check he's okay. Maybe just wake him up first if he's sleeping, say you're feeling all right, you know. 

[00:12:37]: And I don't think it was the right advice, I'll be honest. I don't think I was advised properly initially. So, it was a horrific thing where literally every two or three hours we'd wake up. This is when he was injecting himself and he didn't have all the tech on him. And so, it became this horrible cycle where, you know, when you don't get enough sleep it's like torture. It genuinely is.  

[00:12:58]: And then you wake up in this foul mood and you're constantly angry and constantly depressed and constantly upset. And I thought, I cannot go through the next however many years of my life like this. And also, my poor son, you know, waking him up at the age of 10 and 11, you know, not letting him have enough sleep. 

[00:13:17]: He was tired at school. He was miserable. And then it was this tag team effort of my husband would wake up or then I'd wake up. And he didn't get enough sleep. So, the household was turning into a very dark place. And that's when I went onto the internet, to be honest, and I just went, right, what's out there to help type one. 

[00:13:36]: And what- what is there? Because genuinely the info was not good enough, at least at that time. Initially, we were told about the Freestyle Libre, so we got that for him, and that was life changing. But it didn't let us sleep through the night, because there was no alarm system, and that's what I was looking for. 

[00:13:54]: And then I found the Dexcom G6, and that solved two big problems. One was the finger pricking for my son, which he found incredibly painful because he was very skinny at the time and when he'd prick his finger it would actually hit his bones on his fingers, and he'd cry. 
 

[00:14:10]: So that took care of the- the finger pricking problem, but also the alarms from the Dexcom that would wake myself and my husband up if he went too low or if he went too high and it changed our lives. 

[00:14:25]: We got to be able to sleep again two years after the diagnosis and that combined with, you know, the Omnipod pump, because we changed him from injecting to the pump, meant that we got our sleep back and we got our lives back a bit and we were able to control what was happening to him. And for him to then, you know, cause he's tech savvy, to control what was happening to him himself.  

[00:14:51]: So, it changed our lives, and it made me realize how difficult it must be for anybody with type one or type two, to be able to, you know, get through life without this kind of tech. I was such a technophobe before my son got type one. And now I honestly get down on my knees and thank, you know, whoever it is up there, you know, for- for tech, because it has given my son and us our lives back. And that's why I'm so passionate when I talk about it. 

Jack [00:15:25]: It is certainly life changing, especially at night. And I can attest to my parents, one of the struggles they had with doing it with myself testing in the night was that they had to turn the light on to see what you were doing. 
And as an adult, I found the same thing is that when you're fingerpricking, there's all sorts of things that can go wrong. 

[00:15:42]: You know, you can drop the autolet, you can drop the strip, you have to get your phone out to shine a light on the floor, you might not get enough blood up, it might come up with the error, and the Libre just takes care of so much of that. 

[00:15:51]: And Iain, I know you self-fund your own Freestyle Libre. So, before I ask you about that, I just want to ask you about your relationship with sleep because as you mentioned, you have done all sorts of shifts as a broadcaster and author, and you've also worked overnight shows where you've hosted general election and presidential election result shows. 

[00:16:10]: And I think it's really interesting. I know that our audience who work shift patterns, they'll be really interested to know firstly, how much does this affect your diabetes, but also how does working challenging hours affect your sleep as well?  

Iain [00:16:22]: Well, I'm going to be completely honest. I've always been somebody who, a bit like Nina, I don't actually need a huge amount of sleep. 
I go to bed quite late, usually between one and two. And I suppose the older I get, the later I get up. But I'm quite happy, if I have to get up at seven, I'll get up at seven. 

[00:16:39]: And as soon as I get out of bed, that's fine. I'm not one of these people who sort of finds it incredibly difficult to get up in the morning. 
Do I sleep through the night regularly? Probably not. I often wake up around four o'clock and then maybe every half an hour, hour afterwards. So, I used to put that down to the fact that I usually have the dog on the bed with me and I always thought, well, maybe he's sort of waking me up. But actually, I mean, it could be diabetes related that I don't sleep through. I don't know.  

[00:17:10]: But I- I don't feel constantly tired. I think the older you get, the more tired you get. I mean, I- I was just looking at myself in the picture here and I could see these awful bags under my eyes, which I don't recall having before. I mean, Nina will know what this is like. I've just done nine days on the Edinburgh Fringe, two shows a day, and then doing my evening radio show as well. 

[00:17:29]: So that, to be honest, I felt by the time I did my last radio show, I was actually slurring my words. Not really good on the radio. Um, so I mean, I don't know whether that is diabetes related or not, but it's not something I've really felt was affecting me. I mean, I can feel it with my eyes. I can feel it in a sense, sometimes in my feet, I suppose, which is another worry. 

[00:17:53]: Um, but I don't really feel it, that it's having a dramatic effect on my sleep patterns. Um, you said about the shift work and obviously I've told you what my normal hours are, but if there's a, for example, when we had those three by-elections recently, so we decided to do an overnight show from midnight until six. 

[00:18:12]: And, of course, I can check my blood sugars, but I mean, I can't suddenly whip out my pen and sort of stab myself in the middle of interviewing a politician. I suppose I could, it might make it more interesting, you never know. But whenever I get to the end of those shows, I know that my reading is going to be something in the high teens or early twenties. 

[00:18:33]: And okay, we have commercial breaks, but I mean, you can't really do this in front of a panel of four people. Well, I suppose you could, but- so I do those in the knowledge that it is going to send me a bit haywire. 

[00:18:45]: But I've never had a hypo in all the years I've had diabetes. Um, normally my readings are at the higher end rather than the very low end. 

And I have once or twice misread the number on the pen and injected too much. And I think the lowest I've got is sort of 3.8. I don't know what it needs to be to have a hypo, but I've never had one. 

Nina [00:19:07]: Yeah, 3.8 is just hypo, um, so anything under four. Um, but that's- I'm so, touch wood, I'm so happy for you, Iain, because that's, you know, it's- it's great that you can kind of keep that above four and- and stay in check. Um, so yeah, well done. [Laughs]  

Jack [00:19:23]: So just going back to, um, so you self-fund the Freestyle Libre sensors, and so Nina has spoken about her positive experiences with that tech, and I've had nothing but positive experiences generally as well. What's your experiences like with the Libre?  

Iain [00:19:36]: Well, it was transformational in a sense, because even though, I mean, there's that little pain when you prick your finger, and that never really bothered me, but it is a disincentive to do it. So, I wasn't doing it often enough. 

[00:19:49]: Whereas with- I probably still don't do it often enough with the Freestyle Libre, but all it is, you just scan it, and it gives you a reading. I mean, how wonderful is that? And I think there were a lot of people who were sceptical about the accuracy of it at the beginning, but I remember in the first few weeks, I would do both. 

[00:20:05]: I would scan and I would finger prick and invariably, well, virtually all the time they were within point two or three of each other. So, uh, I mean, the insurance industry, for example, took a long time to allow Freestyle Libre readings, like if you're driving a car, for example. I have to, as a condition, DVLA and my insurance company, I have to scan for a reading before I drive. 

[00:20:30]: Now, again, I'm not going to say that I do it every time because my memory is not what it might be, but I do try and do it all the time, as much as I can, but that's a huge advance. Because I used to have to have the finger prick stuff in the car because they wouldn't accept the readings from that. 

[00:20:47]: So that's- that's been an advance. But look, I'm lucky I can afford it. It was 25 quid a week and not everyone can afford that. I understand that. When they said that it was going to go on the NHS, I was sort of mentally trying to calculate what that would cost the taxpayer if everyone who was a diabetic had one of these.

[00:21:04]: But, of course, they restrict it to type ones. And I do get that. But there are a lot of type two people who would benefit from this, but just cannot afford it. And it's very easy to say, oh, well, is a Freestyle Libre not more important than a Sky Sports subscription? 

[00:21:21]: It's a sort of knee jerk thing that you say in these circumstances, but it doesn't always really compute, I don't think, because you can always find something, I suppose, that you can say, well, that's a bit of a luxury. Why don't you ditch that and- and have this instead?  

Jack [00:21:35]: We've spoken previously on this series about eligibility and technology and the problems that people living with diabetes, type two diabetes in particular, can face when it comes to eligibility. 

[00:21:46]: And we're really hoping that there'll be a shift change in the next five, ten years where technology that we know can be so beneficial for people with diabetes, opens up and more people can access it.  

[00:21:56]: Um, I'd like to shift next on to food because I think food can be a really interesting kind of element of sleep. And Nina, especially as you experienced those really tough nights where you're sleep deprived and the next day is- is much harder.

[00:22:11]: How much more difficult was meal planning? Especially in the first few years following Aidan's diagnosis and getting used to, you know, the new foods that he is recommended to have and to not have. And when you're in a really sleep deprived state managing that for the family.  

Nina [00:22:26]: Well, so it's not so much the meal planning. It's the fact that we need to know what the carbs are in all the meals that we're making. 
So, I didn't change what we ate as a family. I literally just had to weigh everything. So that's the thing that we have to do, you know, in our family. 

[00:22:42]: So, everyone sits at the table, everyone takes what they want, but the difference is my son will have a weighing scale on this plate as he takes the spaghetti or as he takes the rice, or as he takes, you know, the potatoes, it's the main carbs in the meal, are what he has to make sure he's taking the right amount of insulin for that. 

[00:22:59]: But just generally with lack of sleep, I can tell you that, you know, my desire to cook goes out the window. You know, when you're that tired and irritated and just angry and upset, it's easier to pick up a takeaway menu and just order Deliveroo and just get it done, you know, because that's the side that's exhausting. 

[00:23:17]: It's not so much the actual thinking of what he's going to have, because as a teenage boy who right now, by the way, who is 16 and six foot one and goes to the gym five times a week and eats just under 4,000 calories a day, because he wants to be jacked, that is what I'm dealing with in the household right now. [Laughs].

[00:23:37]: You know, he- like, if I cook spaghetti, I can't just cook one pack, one family pack, I have to cook a pack and a half of spaghetti because he is just, he's looking at, you know, getting the calories in, um, so that along with the carbs. So, he now looks at protein content, carb content, calorie content, and fat content in order to get his workout done in the right way. 

[00:24:02]: You know what, I'd rather have a kid who's really into the gym than have a kid that, you know, has no interest in doing any exercise whatsoever, but that is his decision. You know, the one thing I've let my, both my children do, but especially my son is that, since the diagnosis, I've left it to him as to how he's going to look after himself, you know, because I think that's important to do. 

[00:24:24]: He's just got his first summer job and he has to handle it. He went for his first trip away to Spain for a week and I had to let go. I mean, I've got the tech that, you know, on my watch, I can see no matter where he is in the world, what his blood sugar is doing. Um, and I find that if I'm at work and I'm on set, I actually have to keep that away from me because, you know, if I see him hypoing and he's out in Spain somewhere and me going, for goodness sake, take some dextrose [laughs]. It's like, it doesn't help.  

[00:24:56]: So, I've had to, as a mother, I've had to learn to let go of that. And that is hard to do, especially when they've had to grow up faster. And when your child is ill from the age of about 10, they grow up faster than other children. Now what we're dealing with is a different ball game. 

[00:25:14]: Now we're dealing with, you know, he's 16, he's already asking me about alcohol, what can he drink? What will that do to his blood sugar? You know, and several other inappropriate questions that have come up where I've gone, don't ask me, ask your father. 

[00:25:28]: So, there's- there's a lot going on in the family at this point. And, you know, my daughter, who's three years older to him, you know, as a sibling, she's also had to deal with everything that's happened to him. You know, because diabetes, type one or type two, I'm sure, affects everyone in the family in many different ways. 

[00:25:48]: But as a kid, you know, that's the side of my son that hasn't grown up yet, obviously. So, he's like, well, this is happening to me. You know, it's this, and so why does it bother you? Why does it affect you? And you kind of go, well, you'll understand when you're older, you know, I get that he doesn't get it yet and that's fine. 

[00:26:05]: But he gets upset if I get upset if he's hypo and he's like, why is it bothering you if I'm hypo and I'm like, because I'm your mother and I worry because I've heard about all these horrible complications that happen, you know, and that's the side of this condition that really angers me more than anything else is that you don't see the complications, but they always talk about them. 

[00:26:27]: And I had to, in one of our consultations, I had to actually say to the consultant who we had originally, can you not talk about all the complications in front of my 11-year-old boy? Because he's hearing these things and thinking, oh my gosh, I'm going to lose a leg. I'm going to go blind. I'm going to do this. 

[00:26:48]: And I'm like, he's too young to hear that. Tell it to me. That's fine. I'll absorb it and I'll figure it out. But don’t say it in front of a child, you know, they're too little. It's frightening enough that he knows he's got something that's lifelong and then you add in these things. So, for me, if I could change one thing about the condition is the training for consultants and doctors when they talk to parents and to children about type one diabetes. 

[00:27:16]: They frighten you to a point where you think, oh my goodness, you know, is there any point in living anymore? It's, it genuinely, it felt that bad. So, I encourage proper training so that they can speak properly and- and look after the human being that's going through it and the people surrounding them 
 
Iain [00:27:34]: I think that's such a good point. Uh, and I mean, I've been through the walls over the last year, not related to diabetes, but with the hip and, um, I- believe it or not, let this be a warning to you, Nina, I fell off the stage at Buxton Opera House into the orchestra pit.  

Nina [00:27:50]: Oh my word. 
 
Iain [00:27:51]: Really sort of buggered up my right knee and it- and it's come back now where, although I'm walking fine after my hip operation, I now am hobbling because of the knee. But what I found is that I think consultants and I mean, not everyone, but they lose their emotional intelligence because they're dealing with this every day, talking to sort of five, ten patients a day. And it becomes a matter-of-fact thing to them. And they don't really seem to understand the- what it's doing to your head as well. Um, so I think you make a really good point there.  

Nina [00:28:21]: Thank you. I genuinely think the area that needs to be worked on right now within the diabetic community is mental health. I think people are just given information and then you're sent away and then you're kind of, like, you're on your own. 

[00:28:35]: Do you know that for the first, what, three years we tried to get an appointment for my son, um, because they said, oh, you can, you can get a, uh, you know, psychiatric appointment as well to help him through this. Three years, three years it took to get him an appointment, by which point we'd already gone private and I’d taken him to someone personally, because I thought, no, he needs to be able to talk about this because he was getting angrier and angrier. And then he was diagnosed with diabetic rage, which I didn't know was an actual condition. 

Jack [00:29:05]: I've never heard of diabetic rage.  

Nina [00:29:06]: Yeah, there's something called diabetic rage. I thought it was to do with the fact that he's a teenage boy, you know, the hormones are kicking in, but you take the testosterone being released in his body and combine that with the anger from the high blood sugar and- and all of that. 

[00:29:20]: And he was walking around like a time bomb waiting to go off. And when I took him to the psychiatrist and they said, um, so I never know if it's psychiatrist or psychologist or whichever one it is, he was brilliant because he said you have to look into getting either a pet if you want something holistic or we have to look into medication to calm down the anger and I said I don't want any medication in him apart from insulin. 

[00:29:47]: So that's why we got our little dog Basil and he's been a miracle worker because when my son gets angry, if you put a dog into his arms or a pet into his arms, he can't be angry because they're so cute and it calms him down almost instantly. So, I think they don't pay enough attention to the mental health side of things. 

[00:30:07]: They'll give you so much information when it comes to the medical stuff, but they don't help you navigate, how do I cope with the child dealing with this news? And how do I cope with myself dealing with this news? 

[00:30:20]: I've had to go into therapy along with my son in order to be able to be healthy, to then be positive enough to help other people. So, there is so much at play, and I think that training needs to be given to them. 

Jack [00:30:35]: We have heard that on this series, and we've also heard from storytellers on this series when it comes to mental wellbeing that the options for treatment within the diabetes pathway just aren't as good as they could be and hopefully that's something, similar to the eligibility criteria for tech, that in five to ten years, we'll see some differences there. 

[00:30:56]: And just going back to your son training to be jacked. Um, I went through a period of that when I was about 21. I did two weeks and then it went away. So, who knows? It might come and go very quickly before it started. 
 
[00:31:08]: Um, Iain, I'd like to bring the conversation back to you about food as well, and to see if there's any similarities in your experiences with Nina, especially when you're tired and because you have so many different things going on, is food a big problem for you, especially when it comes to, if you know you're going to be doing, you know, a different set of shifts throughout the week. Is planning ahead quite hard, or is it something that you just wing it as you go along and it's just very much trial and error?  

Iain [00:31:33]: Yes. Um, I- I mean, just going back to the diabetic rage thing, there was me thinking it was Twitter that caused me to be angry all the time. [Laughs].
   
[00:31:45]: I mean, I don't cook. My partner cooks everything and I mean, I've always been a very fussy eater. So, I know that I'm not the easiest person to cook for, but because I get home very late and that's four days a week, Monday to Thursday, well, actually it's Monday to Wednesday because on Thursdays I stay in a hotel because I do Good Morning Britain every Friday morning and have to be up at ten past five and then home by thirty so I go back to bed. 

[00:32:12]: But, of course, that plays havoc with your food as well. Because again, you're eating very late in the evening, and someone explained to me what happens to the food in your stomach. I mean, cause sometimes I will eat and then I'm in bed within an hour. And someone then explained to me what happens to the food in your stomach. 

[00:32:30]: And for a diabetic, I mean, it's bad. So, I've had this discussion at work about, well, I really like doing the time slot that I do. But in the end, I can't do it forever because it will kill me. Then they're not going to move other presenters just because I want to do an early or I need to do, I don't actually want to do an earlier slot, but I kind of need to. 

[00:32:52]: So, there's all that going on in the background and there's times when I think, well, maybe I've been doing it for 13 years, I do love it. But maybe it is time to be a bit more sensible and maybe do something else. But it's a big decision to make. 

[00:33:07]: Um, and I don't do any food planning. I do try to vary it a bit. 
I'm eating much less red meat than I used to. I mean, I'm not sure how deliberate that is, but it has happened. I did try, I had a, I don't know if you know what a hiatus hernia is, but it's where your stomach sort of comes up your oesophagus. And I was told by a consultant, I should go on a sort of more Mediterranean diet. 

[00:33:31]: And I said, well, what's that? Well, just lots of grilled vegetables. So, I did do that for a time. But I've always thought a balanced diet is probably the healthiest diet, where you still can have things that you're not really supposed to have, but sort of everything in moderation, I suppose. But the theory of that is sometimes easier than the practice. 

[00:33:51]: I mean, if I open a pack of Pringles, do you think they're only left within half an hour? [Laughs]. So, you try and do your best and then you let yourself down, you let your family down. And, but I- I mean, somebody said to me the other day, how long do you want to live? And I thought to myself, well, I mean, I'm not particularly somebody who wants to live to 90 or 100 because I think I'm going to be an absolute physical wreck if I do. 

[00:34:21]: But on the other hand, I don't want to deliberately shorten my life by the things that I'm doing. But if you think about it, I probably am. I mean, nobody likes to talk about this, but diabetics do die earlier than other people. My godmother, I mean, I remember she was a type one and she had this massive needle and she would have to inject herself before every meal.
 
[00:34:41]: And this was at a point, like this was in the 60s and 70s. And I remember sort of wanting to watch her do it. Um, but, but that was it. I mean, she had to guess what she should have, really. There was no sort of guidance. Um, she died at 74. I'm 61. And I think, well, if I only got 13 years left, I mean, I try not to think about it too much, but I kind of realized that I probably will die before a lot of my contemporaries. And that's quite a sobering thought.  

Jack [00:35:08]: Just to check the context that were asked that question was within a healthcare environment? It wasn't somebody that you just met that asked you, how long do you want to live?  

Iain [00:35:15]: No, it was a friend. 
 
Jack [00:35:17]: It was a friend?
 
Iain [00:35:20]: [Laughs]. Some friend.  

Jack [00:35:20]: That is- that's an intense friendship. I don't know if I could continue a friendship where I knew that question might be coming. [Laughs]. Nina, one thing I’d like to ask you as well is what advice would you give for any parents or guardians out there who might be struggling to find a sleeping pattern that works with their child? 

[00:35:40]: And whether this is something emotional or practical, but something that you found helped you and your husband during those years following Aidan's diagnosis, where the night time was such a worry. 

Nina [00:35:49]: I would say, uh, you know, I'm taking advice from my husband, to be honest. So, I'm a worrier. I'm a natural born worrier. Anxiety is something I have lived with from a very, very young age. That's just who I am.
 
[00:36:03]: And my husband said, you know, think more like a man when you go to bed. He said, men are able to sleep much more easily than women because we can compartmentalise. 

[00:36:14]: He says, when I go to bed, I think, can I do anything about the situation that we're in by worrying about it? If the answer is no, and if the answer is let's deal with it in the morning, go to sleep. There is nothing else you can do. I mean, I'm a massive campaigner for trying to get, you know, all of these tech gadgets onto the NHS. 

[00:36:38]: I believe whether you're type 1 or type 2, anyone with diabetes, they would benefit so much from the Libre, from the Dexcom, from any kind of equipment that's going to help them to sleep. So, if you can, apply for it and haven't and are eligible for it or can afford it, please get the tech. It is life changing. 

[00:36:58]: It will allow you to sleep, but in the meantime, genuinely try and compartmentalize. Say to yourself before you go to bed, which is now genuinely something that I do. Can I do anything about, you know, whatever's bothering me or worrying me in the next seven or eight hours? If not, you know, switch off. I have these apps that help me sleep at night.
 
[00:37:21]: I put on some music. I drink chamomile tea. I do everything possible, and it does help a little in some way, but the most important way to try and get some sleep is literally, I have to do a tiny bit of meditation or mindfulness for even five minutes. 

[00:37:37]: To say, look at all the good stuff in my life, genuinely just look at what is good and that, believe it or not, that really helps. 
Whatever you can be grateful for, be grateful for. Whatever you can't solve, don't solve, and get some sleep.

Iain [00:37:54]: Can I just add a couple of things because they’ve just occurred to me about sleep. Um, my father was a farmer. And he would come in for his lunch, which my mother would dutifully cook him, at one o'clock. He'd have his lunch, and then he'd go and sit on the couch, and within five seconds he was asleep. 

[00:38:10]: And I always thought, oh, I wish I could do that. Because when I was a child, it did take me quite a long time to go to sleep. And now I find I can do exactly the same thing. And if you said to me, right, you have two minutes to go to sleep. And I'm going to watch you do it. I could do it now. My mother, on the other hand, was a complete insomniac. 

[00:38:30]: And if on the rare occasions I couldn't get to sleep, I have this trick, which I find difficult to explain, but bear with me. I imagine that I'm an old-fashioned television, and someone is zapping the off button on the television at midnight. And do you remember on the old televisions, there was this little light that sort of gradually went out on the television? 

[00:38:52]: Well, I imagine that's my brain. And that my brain actually just is zapped off and I empty my head of any thoughts at all. And I can't explain how I do it, but that's what I do. And it works for me. I think everybody's got a different way, but they just have to find it. 

[00:39:10]: Everyone can go to sleep. And I used to try and explain this to my mother until I was blue in the face because she would literally go the whole night because she was like you, Nina, she was a worrier and she worried about everything and that would prevent her from sleeping. And I tried to get her to do this, but I could never explain it properly.  

Nina [00:39:27]: No, it's a brilliant idea. Actually, I might try that. That's- that sounds incredible. No, it's part of that whole trying to find different ways to let go and to meditate and this and that. And the other, by the way, so one thing that I definitely do now is if I can't sleep, I will not force myself to sleep. I will get up, I will go into another room and I'll either read a book or put the TV on or something. 

[00:39:48]: But one thing I've genuinely learned, don't force yourself to sleep. If you can't, do an activity, something gentle, like reading or watching something, just do it, that'll tire you out. 

[00:39:59]: Because that takes up a lot less energy than forcing yourself to actually do it. It's a case of dealing with anxiety first, and then the sleep comes. But getting to the root of the anxiety, and you know what? I used to, when I was younger, shy away from people talking about therapy, or this or that, and I truly believe just talking to someone else, it doesn't have to be a professional. If you've got really great dear friends, do that. It actually really helps.  

Jack [00:40:27]: I think there's some really brilliant advice in there and I think there's an opportunity that is being missed for a game show where someone is told they have two minutes to fall asleep and for them to fall asleep within that time frame. I would watch that very, very, curiously. [Laughs].

[00:40:46]: So, I was actually going to ask you, Iain, for if you had any tips regarding sleep, and you've given me an answer that I could have never have predicted. But I think there's some really, really strong insight there. And I think sleep is such a complicated thing for so many people. 

[00:40:59]: I think we've really touched on a number of different ways it can affect. And thank you both so much for your time today in talking about sleep and for joining us on this episode of the podcast. It's been great to meet you and great to talk to you. So, thank you so much for joining us.  

Iain [00:41:14]: Thank you.  

Nina [00:41:14]: Thanks Jack. 

Jack [00:41:22]: 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.  

[00:41:37]: If you are living with diabetes and struggling with sleep or experiencing low or high blood sugar during the night, you can ask your healthcare team for advice. 

[00:41:45]: Additionally, you can ask your medical team for advice if you are a parent or guardian of a child living with diabetes who struggles to sleep because of their blood sugar levels. 

[00:41:56]: This is the last episode in the current series of Diabetes Discussions, a Diabetes UK podcast. If you like what you've heard, you can go back and check out our previous episodes. And if you'd like to give us feedback on this series, including which episodes were your favourite, or topics you'd like to hear more about, then feel free to contact us at content@diabetes.org.uk. 
 
[00:42:17]: Please rate and review to help others discover the podcast, and if you've not already done so, then make sure you hit subscribe so you'll automatically receive all future episodes. 

[00:42:26]: You can also follow Diabetes UK across the social channels listed in the show notes to keep up to date with everything we're doing as a charity and be the first to know when the podcast returns. Thanks for listening and until next time, goodbye.