What makes you kind of take your diabetes on board and look after your diabetes but at the same time go and do everything you want to do?

Yeah. I think it is because of my aim. I’ve always been, I’ve always felt very strongly that I don’t want the diabetes to overtake me. I always want to be the one sitting on top of it. So as I said I can go out and do all these things and don’t worry about it.

Yeah I’ve always tried to stay on top of the diabetes rather than it being on top of me because I’ve wanted to do things as anyone else without the condition would do. And at the end of the day you’re not any different to anyone else and theres no reason why you can’t do anything that any person without diabetes can do. I’m yet to find something that I haven’t been able to do because of my diabetes. It’s only really the issues of independence and spontaneous decisions to go out and do something that you have to control. It’s not the doing something in itself. I mean with diabetes you do have to plan more. You have to know what you’re doing on specific days so that you can prepare for it. So that you can take your insulin to certain places but it’s only the planning. It’s not what you’re doing in the day that I’ve found is the controlling factor because yeah, as I say, any diabetic can do anything. It, it’s not a matter of it being physically constrictive or anything like that so I think it’s important that I go out and do anything normally as anyone else would so that I fulfil my aim to stay on top of it.

Do you think it has something to do with the fact that you were young when you started to manage your diabetes?

Yeah. I mean [sigh] I suppose it is although I still had that period before age 11 when I could go out and do anything and do what I wished to do at the time. So it was a definite change when I was diagnosed and it was a decision that I had to make to plan more, to keep control of my diabetes. But at the end of the day it wasn’t really a decision because theres nothing else you can do if you want to stay on top of it, if you want to keep good control you have to plan so that you keep this constant blood sugar level.

I find that you have to make, in your general social life you need to make a few changes when you become diabetic. You need to know, before you do certain things you need a slightly better understanding of exactly what you’re going to do. Nothing too impulsive. That way you can prepare for it. Like I completely naturally ask whenever I make an arrangement with one of my friends, ‘When are we going to eat? And what are we going to eat?’ And they, because I’ve been asking them for four years, don’t even notice it either when they tell me. But it’s things like that. And whether you’re going to eat at this person’s house or not. Which you just need to get used to.

And also things like taking your insulin around with you. I have like a very small bag which I carry around when I’m out of the house, almost everywhere. Of course not at school, because I’ve got my school bag and I can just put it in there. But I usually carry around my fast-acting insulin and my blood sugar testing kit and a few tissues. Which is like nothing major, but you need to carry them around with you anywhere. Same thing with bringing around glucose tablets. When you’re at school, when you’re at a friend’s, even at, even places where you could never imagine you’ll get a hypo. If you’re stuck in the middle of a field somewhere and you start having a hypo and nobody has any food on them and you don’t have glucose tablets, you’ll be in trouble. So you need to prepare yourself for an eventuality of something like that occurring, even when you don’t expect it. Yes.

So the social aspect is the most difficult thing for you?

No.

In terms of organising and’?

It was initially.

Initially?

But you very quickly get used to it. You very quickly, it comes, there, to me now there is no difference in my social life now that I’m diabetic. I do exactly the same things with all my friends as anybody else does. The only difference is I’m, I’ve got a bag around wherever I go. Or, and that at meals I’ll be injecting myself. But you don’t need to run off unless you’re very, if you’re, if you’re quite sensitive about people watching you inject. Then you can just like go off to the loo or something and do it there. But I’m okay with it and I just do it at the table. It takes 20 seconds and it’s just something that you do.

After I turned fourteen I started to have a lot of hypos, started – because I changed onto a different injection – four injections a day, where you have your insulin for your meals [noise] and then you have you long acting for bed to cover you and that was quite hard to get used to because it was – didn’t know what to think about that and I was having, like, highs, lows, and it was just really hard to work and bad HbAC1s, haemoglobins and all that, and it’s still bad now, but I’m just trying to sort out, because it’s really hard, and…

So I was surfing and everything and when you do sport it was just getting pain all summer. I was like surfing and I thought, oh I’m not having surfing and like being, like, really low and having when your muscles relax and you like have loads of hypos and it’s too much to deal with, so I thought, oh I’ll start rebelling and being high all summer, and just making the family really miserable and horrible, and everyone was getting quite fed up with this grotty teenager that was trying to ruin their lives and just wouldn’t take any insulin and just thought oh I’m going to surf and, not worry, just won’t have any hypos or nothing. And so, I decided to do that and when I went back to school I – doing it more and more until one night I came back and I was just a complete mess and came back and my sugar levels were about 32 and I was on the rocks and I wouldn’t eat or nothing and everyone was having a go at me, so I decided to pick up a piece of wood and just start smashing everything, and so everyone was having a go at me. I just didn’t want to know and so we had to have the coppers round, to sort me out, and I weren’t really happy and – I kind of still went on, and then I had to go to the hospital to the clinic and they all started talking to me, and they go oh your HSBC1’s 9.3 and at that time that was the worst one weve ever had, so’ And then I got more irate so I was – I was just really fed up again, and it was getting more and more harder and harder, and highs and just – and when your HbAC1 gets bad it’s just like really irritating, because they want you to have it in one range. Anyway it’s mostly to be seven and it – it’s still solid now to get it there, and really hard to keep your sugar levels normal, because if you have your good HbAC1 – keep the red cells working, stops you from going blind. So, not only was I making my family miserable, I was making my body parts – ruining my body parts and everything,

But I want to be normal, so – but if you’re scared of having hypos, do not, do not be high all the time because in the long run you will be screwed. Your eyesight will be gone, or you’ll be on a dialysis machine. You’ll be in the middle of nowhere, thinking what’s happened to me.

The rebelling period. Tell me what were you thinking at that time, or how frustrated you were?

I just wanted to be cool at that time.

Cool?

Yeah, I wanted to be a surfer. I wanted to be a pro-surfer, do it all and I don’t need – I was like – do it all ’cause I – I didn’t want the hypos and that. I just wanted to surf all the time, and it’s like a passion and if you’re in a passion with anything you want to do that more than you want to do another thing. That was just the main thing. I wanted to just surf and have no problems, and I thought I’ll just keep myself high. And I was about – I don’t know twenty, it’s really, I’m really amazed now I did that actually. I can’t believe I kept myself that high. I was just on a different kind of planet and it was real, real high and I was just surfing all the time and being high and everything, and then I had a bad HSBC1 again and I was sick and – at that – for the second time, and ill agai

I think my hospital very much went out of it’s way to try not to stop you going to hospital because you know you are a teenager and at least if you’re there then they get a chance to check up on you every six months where if they have a go at you they don’t. Although when I was just started lower sixth, so no I was seventeen. I’m not quite sure when it was I went to the doctor and my normal doctor wasn’t there it was someone else who was like, ‘Look you’re being an idiot. You’re gaining loads of weight. You’re going to damage yourself. Stop it now or you’ll regret it in later life. Which I wasn’t impressed with but actually that was what made me realise that what I was doing was stupid. So I don’t know whether the hospital was right or wrong not to have a go at me but that’s what they did.

So it was kind of a shock to your system, the fact that you were confronted with this?

Well I mean I talked about it with my parents but I kind of just. I was a teenager, you know. It was how I rebelled. I didn’t drink. I didn’t smoke. I didn’t take drugs but I didn’t look after my diabetes. It I guess I’d had years of people saying you’ve got to do this, you’ve got to do that, you’ve got to make sure you have sugar, you’ve got to do this. And I always did all those things. I never didn’t inject myself or didn’t have sugar but I also ate whatever I felt like and ignored it as much as possible. And so yeah it was a bit of a shock at the time but like.

Were there arguments or situations’?

A little bit. I mean there were arguments. If they talked to me I’d tend to burst into tears but at the time I was also doing very well at school, running youth clubs, doing, you know like, all my friends were having arguments with their parents about something. A lot of them about staying out late or about this, that and the other. I was kind of doing really well on all the normal things that teenagers grow up on and this was the thing that I picked. So there were no more arguments than there were with any of my friends parents I guess. So it never felt like [sneeze], like that much of a problem. I mean I would just, ignored it so I refused to talk about it I guess.

I mean I used to get Balance, the Diabetes UK magazine and it would always have, you know, losing limbs and this, that and the other and I used to think this is ridiculous. I choose to live my life positively and I don’t want to think about this. I’d rather, you know, not let diabetes win and do whatever I want to do. But I knew, you know, I knew what I was doing was stupid. I think yeah as I was, once I got to sixth form and kind of realised that I just didn’t feel very well. And I’d go to the doctor and they’d do all the tests and I was always fine you know, I’d always got circulation and could feel things but every time the tests were done I was always like, [oow ya ooh] what if I fail or whatever. And I think it was when the doctor said, ‘Look this is serious’ that I realised that actually it wasn’t something to think about once every six months when you go to hospital. It was my life, for the rest of my life. And guess it was just because I started being aware that I wasn’t going to stay a teenager forever and that, you know, I did want to be healthy for, for as much of the rest of my life as I could be.

Tell a little bit about those early times because you said at the beginning you were not that upset?

No at first, I dealt with it really well and I just accepted it and you know, I was really’ I was just really good with it. And I didn’t mind really, I didn’t feel sorry for myself or different and all my friends are really supportive, which helps. And you know, they were always asking me to check my blood sugar and making sure I was okay, so it was really nice. It was only after maybe a couple of years that it, you know, I started to get a bit fed up with it.

So you were sixteen by then?

Hmm, yeah.

What do mean fed up with it?

I don’t remember the exact reason’ yeah there was nothing specific that changed the way I felt that I can think of. It happened gradually and it, it’s all to do with an eating disorder I developed. And still now, you know, it’s impossible to say when it started or how exactly it started, it’s just something that, you know, that develops. You know how strong your mind is and if you get a thought in your head, and it gets out of control, then you know, theres nothing you can do to stop it. And especially’ I think it’s an issue with a lot of young female diabetics because all of the sudden you know, you’re growing up, everythings fine. You’ve probably even lost a bit a weight which you know, you’re probably happy about. But then you start on insulin and you put a little bit of weight back on to what you should be normally and everythings suddenly focused around food and when you go to clinic, they weigh you, and it’ it’s just you become. I became anyway, very body, very, very self-conscious about my body’ and that’s where all the problems started really.

I do remember feeling quite different at things like parties, children’s parties, and when people were allowed to have cake and sweets and things like that. I didn’t realise how much of an impact that actually had until I hit my teens. So up until probably 12 or 13 I was, was very well controlled. My HbA1c levels were, were great. It was a struggle. It wasn’t easy as a child, but it helped with my sugars being normal. Obviously when you’re all over the place you just feel horrible and poorly.

When I hit my teens and I went to high school I started to feel really quite different. I actually wanted to know if there was any other types of insulin that I could go on that could make me have a bit more of a relaxed lifestyle, because I was still on a very rigid regime. So I had to eat at certain times, eat certain meals. I wasn’t allowed certain things. And by that time I think it was starting to wear on me the fact that, you know, I wasn’t allowed to just eat sweet things and pizza and things like that, you know, that all the other kids were having. I also had dreams of becoming a performing artist. And eventually I, in hindsight I know that I became depressed, feeling like this. And my control started to slip because of teenage pressures and I was starting to go out and, you know, ‘Oh, I’ll be okay just having this sweet and this chocolate bar. And I’ll be all right just missing this injection just this once. And my control started to slide.

Going through adolescence, obviously you do, you do different things. You start going out more, mixing with different types of people. I didn’t really talk about my diabetes a lot to other people. So they weren’t really fully aware of the situation that I was in and what I needed to be like. They just thought it meant that I didn’t have to eat sugar, or maybe my sugar went low now and again and I had to eat a Mars bar. I didn’t really tell people around me. Which I probably should have done. I should, probably should have made people more aware. But I didn’t.

I have, I was feeling the hypos and the hypers which I really didn’t like at all. And they were affecting my concentration and my daily life.

So it took about a month or two to adjust to a right, the right amount of insulin to take per day. So I ended up on small amounts and to be honest it was quite easy at the beginning because the first year they had, they said it was the honeymoon period where the body was still kind of producing a little insulin in the body and thats good. And that was easy for me. But after that time when I was reaching around 13 and I started growing up, it was much harder to control. And I found I was taking much larger doses of insulin. And I jumped up to 20 units and then to 30 units and then changing insulins and I was taking a base insulin and a short acting insulin. And from then I moved on to mixed insulin because I was taking two injections in the morning which was a nuisance and it took up more time. And I had to inject twice in my leg. And it was getting quite painful because my leg started swelling up and the same with my stomach. My stomach started swelling up. And so I took Mixtard, which is mixed insulin and it helped me with the injections but still I was experiencing the problem where there was a cycle that is common with a lot of diabetics where you take insulin in the morning and then you get a hypo mid-morning and then you have something to eat, and then before lunch it becomes too high and you take more insulin, low again before dinner, you eat too much. And then you take, then you take more than you need in the evening. Then you wake up in the morning and in the middle of the night, and you wake up with a high and it gets really frustrating and having a high blood sugar, you get frustrated but also the feeling, just, it gives you a feeling of you don’t have any confidence and you don’t really, can’t be bothered, you have no energy, literally, to you know, take control again.

And it’s, it got quite dangerous because during the years when I was experiencing lots of high blood sugars, not as much low blood sugars, I was getting quite, well depressed, not intensively depressed but quite sad about it secretly. I wasn’t telling everyone about it. I was in moments when I had a high blood sugar and I was getting quite frustrated I might lash out and buy chocolate and eat it regardless of my sugar levels. And it was it was quite serious. I after about a year of that I explained to my dad and he is the one who I used to go to for these problems, because he was good at very calmly assessing a problem and he helped me through it. And only recently at around April this year, I went to a doctor, a private doctor in London and he suggested that I completely move onto another insulin regime.

I’ve sometimes, you know when I’m having a bad day I think. ‘Oh why me, why did he pick me? Why, why is it me that has to have this thing?’ Especially when you don’t know what’s wrong. If you know, you do get a few odd results and you’re thinking, ‘Oh dear I’m going to be blind for the rest of my life and I’m only going to live to 30. But, you know if you control it and you will control it because it’s intuition and you know theres no problem. You just get on with it and that’s it. So I mean it will be struggle to begin with unfortunately. I can tell you that for free. But as long as you’ve got the intuition there, then you’ll know what to do. Yeah.

Struggle when you began this process of transition because you were taking over from your parents?

Yeah, oh yeah because, yeah we would argue a lot more back then because they think, you know, I, they were telling me what to do and I was beginning to get an idea for myself of how to do it. And wed end up arguing about it quite a lot. But, you know, now that I’ve taken over it for myself you know, theres no, not anyone there to challenge me except for the people at diabetic clinic and. You’re overweight and all that kind of thing which I don’t like. Yeah so.

Tell me what would you have done differently regarding your diabetes a few years ago?

I would have probably started doing it myself a lot sooner if I could have done. And I was just so scared of doing it myself because you can, you know you’re going to, you know when you’re going to put it in. If someone else is doing it you can look away. But if you’re doing it yourself you’re, you’re much more conscious of injecting yourself and taking your blood sugars and everything.

What does to be in control mean to you?

Being in control, it means you know where you are. If you know that you’re in control then you can just forget about it. You don’t have to worry about it because, you know, if something is wrong they’ll just, they’ll have, you know, just go fix it. If you’re not in control you’re worrying all. And I can, you know, are they going to, is it going to be ok? Are they going to get it right, are they going to get the right mix? Do they know what I’ve eaten today or I’ve done today? That kind of thing. Just being in control takes everything off your mind I guess yeah. If you have more responsibility it makes you feel more at ease I guess with the, with what you have to do, yeah.

How does it make you feel now, that you’re sort of taking control of your illness?

Yeah. It makes me feel a different person, in a way, because I feel quite happy, like when I wake up in the morning and I know that – I know that I’m in control of it and, I decide what happens, like my insulin, and I feel like I’m leading my diabetes now, which I’m really pleased about. I think if I was back where I was before, I wouldn’t have got nowhere, but like I said if you just ask for the help then you eventually become a better person for it.

What have you had to learn in order to manage your diabetes?

A lot of stuff about me in a way, like your confidence – you’ve got to – and your self esteem. You’ve had to learn to be more – not more confident – but more, like, aware of stuff that’s going on around you, because that helps your diabetes, like you know every day occurrences. So I’ve had to learn my routine, and when to – when to have injections, when to test yourself. It’s like when I go away on school trips I’ve had to learn how to communicate with other people to let them know that I am diabetic and what sort of stuff I need to help me and stuff. So I’ve had to communicate with other people more.

And since you have started managing your diabetes yourself have there been ups and downs?

Yeah not as much now, but when I first started there was lots of blips. Sometimes I had, I had to stop and evaluate and think, ‘Right, I’ve got to do it’ – when I held the injection the block come back again, that’s why I still see the counsellor now, just to make sure I don’t relapse. There was times when like after dinner, I was, I didn’t really want dinner to end, because I knew I had to have my injection, so’ You’ve just got – with the parents pushing you – well not pushing you, but, like, helping you, that really helped, because that let me carry on, so’ But whoever helps you, you’ve still got to make sure you keep seeing them regularly, because you don’t want to go back to where you was before, because you’ve come a long way.

Are you scared of the injection itself or’?

It was more – I think it was – that was what the counsellor was trying to work out, and it was a long time – it was more the letting go of the independence – of the dependence and knew I had to do it on my own, but I weren’t really knowing that. It was – and it was more the fear of what happens if it’s in my leg, and it doesn’t go in? It was more the, just the build up of so many worries that eventually just made me block and I just couldn’t do it. It was the build up of a lot of thoughts of what would happen. What would happen if I give myself the wrong dose? It was more main worries that what would happen. It just got a bit out of control really, and this made me eventually not want to do it at all. So, I had to go over that a lot of times just to, eventually get to where I am, so’

So on the one level you had all these anxieties and on the other level you had this longing for independence?

Yeah, yeah. So it was Catch 22 really. Like one brain’s telling you one thing and the other’s the other thing, so it was difficult, very difficult, yeah.

And for how long do you think you will continue seeing the counsellor?

I’m not sure probably a few more sessions, but they’re more wide now, like I go every three months, or every four months, not every two weeks now, so’

But I think it is good to have a, education about carbohydrates and the foods which contain like high glycaemic index and things like that. I think that’s important to understand that, as it does, diet does have a major effect on your diabetes. And so that’s important for a person with diabetes to understand about carbohydrate counting.

I understand that, the basic principles of carbohydrate counting. Whilst I don’t do it rigidly for every meal, I understand. And I seem to, with me because I have a diet that’s quite consistent, I eat the same sort of breakfast cereals and sort of things like that, I understand, my insulin doses don’t have to be adjusted that frequently. I don’t really adjust them. Unless I was going out for dinner and I’d have a big dinner, say a three-course meal for dinner, then obviously I’d do more. But because most days I just have the standards, standard things to eat, I don’t find that I need to adjust my Novorapid dose that much at all.

So that may be one main feature in your experience that, the fact that it’s quite constant?

Yes, it is, yes. I’d definitely say it was constant. With my diet certainly I don’t, I get things that I like and if they work with the insulin dose that I’m injecting I’ll continue to eat them and continue to inject the same amount of insulin.

I don’t want any problems like blindness or things like that. I don’t want any problems with my diabetes. So to have good control and look after myself is vital if I’m going to remain in good health. And also because I’ve got a lot of plans for my future, what I want to become, all things like that. It’s important. Like I’m, I’m only just beginning my life. I need to keep my diabetes controlled so I can fulfill all what I want to do with my life.

I was fine with it. I was a lot’ to be honest I think it took about four months for me to really sort of get used to it. I kept thinking sometimes I was like, ‘Oh gone high, why have I gone high?’ and things like that. But I think after about six months I was pretty on the ball about everything with it. I knew exactly what to do. And most of the time if I did go high I knew why, whereas before I could go high for no apparent reason. But now I know I’ve gone high that means I’ve given myself not enough insulin for whatever I’ve eaten or you now, done exercise and hadn’t done the bolusing right. But yeah I mean a lot, I mean I was lot more confident.

And then after a year, I mean, the change was just amazing. And there were still things I didn’t know after a year though with the pump, you know, theres things ‘ it wasn’t until a year after that I started learning about the square bolusing where you can have certain amount of units, hit then and then two hours later have that. And that did take awhile but I mean getting used to it in the lifestyle was quite hard, with clothes [laughs].

Because you have to have them on like on the side or you have to have pockets or something, which was quite annoying. I didn’t ‘ I don’t think I wore a skirt for awhile because you had to click it the side of your skirt and I just rather just have it in my pocket.

So you wanted to hide it?

Yeah. At first I wanted to hide it, I was sort of a bit wary of it because before I don’t know if all diabetics are the same. But when I didn’t like telling people that I had diabetes, I felt a bit weird about it. Then to have something on the side of you and then they’ll realise that and you’ll say, ‘Well I’ve got diabetes’, and they’ll, they’re going to start asking questions. And when I was younger I didn’t want that. So it took about a year to sort of really show it out and then eventually I just thought, ‘Oh show it. And I actually find it lot easier now to explain my diabetes than I did before… you know, I just say, you know this is my pump, the insulin does this and it a lot easier to explain to people than when I had to explain injections and all that and why’

So were you a bit shy at that time?

Yeah. I was quite a shy child as it was, at that age. So to have that as well was just ‘ it didn’t really help. But it was’ I mean I told a lot of my close friends you know, I had to anyway because if I ever had anything wrong with me, they had do something. But I did find it difficult to tell especially when I was meeting new people and I was like ‘ because when you’re that age you think, oh if you’ thinks you look’ well they’ll think you’re weird and they won’t like you and things like this. But’ my attitudes have changed a lot now, it’s kind of the first things I say now.

Yeah I was sort of doing my GCSEs and I was’ I mean everyone knew I had diabetes and things like that. But it wasn’t really until then that I started feeling confident with it and you know, wasn’t really bothered about it. I started wearing different clothes [laughs] and things like that which was strange for me. But it was’ it was kind of like a big change for me.

And you know, I was able to say, yeah, look I’ve got diabetes, don’t care, you know, so think what you think. But that’s me at the end of the day and not it’s just’ I mean it was ever since I got the pump, I was changing anyway, you know. I was’ my ideas on it was a lot better than I was before.

I wasn’t as afraid to admit I had diabetes than I was before I had the pump. But I mean