Interview 08

Age at interview: 17

Age at diagnosis: 3

Brief Outline: He used to take Insulatard twice daily but now is on NovoRapid three times a day and Lantus in the evenings. His mother used to do his insulin injections until he was eleven years old, but he decided to learn to do them himself. Says he got lots of support from his mother, father, and the diabetes care team. He found that when he went on 'a super diet' he was going low all the time. Says that he has always been aware of the grim consequences of poor diabetes control but that as he grows older that understanding also influences the practice.

Background: Sixth form student; lives with mother & brother. Does not like diabetes described as a chronic illness because 'sometimes you just forget it's there'. Learning to manage his diabetes has meant confidence & a sense of responsibility.

At the age of 11 he decided to start doing his own injections because his parents couldn't tell...

How old were you?

I was about eleven I think, maybe younger because I used to do it in my bum, well my parents did. And my mum did because my dad was useless with needles and stuff like that. He was' he did try his best and he always tried to understand it. And he was usually the one that did come in from work to check-up on me but if you do it in the same place over and over again there, it becomes swollen and it's not as good at absorbing the insulin as it could be if you keep doing it in different places and the problem is if you do it yourself you can feel where the best places to put it because you know it will hurt if you put it into a place that you've been using over and over again. My mum didn't know that and so it [started to] really hurt sometimes. So I thought enough of this, I'm going to learn how to do it for myself. And so one day I did. And my mum was, very proud of me and she took a load of photographs so I've got some of those as well. And I was very proud of myself because it's all part, part of growing up I guess. 

Yeah, I think I didn't always do it myself. I think it was kind of a transitional, you know, my mum would do it sometimes and then when I felt brave enough I'd do it and I'd do it in my leg. But I have an uncle who's diabetic as well and he does it in his stomach and I always used to be, really disgusted by that. I used to think, oh how can you do it in your stomach. But now I've been doing it in my stomach for a very long time because my legs used to bruise very easily so it's better to do it in my stomach, well I find. I mean some people do it in the, their arms and I still can't understand how they do that. It must be really painful.
 

Describes how he feels when he is high and the possible reasons for it. Says that it is a good...

And sometimes I forget and I don't forget, well I've been told I don't forget as, as much as most people my age do. I forget like two or three times a month maybe. It's not a problem because if I know that I'm supposed to have taken it then I just won't eat as much and I'll go home and take my insulin as soon as I get home. So it's not really a problem. Sometimes they'll go sky high and I'll feel really bad but'

What do you mean really bad?

I feel really thirsty, you have an unquenchable thirst and you kind of have. It's like a headache but it's just you feel like your eyes are popping out your head all the time. It's not nice and, but people understand because we're at that age now where, where people understand that kind of thing. And if you say I'm not feeling very well because my blood sugars are high people know what blood sugars are. But back when I was a, a kid you'd say, you know, I'm going low and no one would, no one would know what you meant, you know. You feeling depressed or something, no my blood sugars are going low in fact, you know that kind of thing. So yeah.

If I have a really high result or I have a series of high results then I think I've got to change something here. Something's not right. And I'll just go, you know, and have a rethink of what I've eaten that day and what I've done that day or over the week. And just try and change it. You know, and if I'm putting on a bit of weight then I know I've got to cut down or eat different foods. You know, sometimes you just, you know just your diet changes and you don't realise it when you've got lots of coursework on the go. You start eating things you like instead of things you should and you know, the, you know you just realise it. You know, you just do your blood sugars one day and think. Well how come they're, they're really good a few weeks ago and what have I done differently and then you just go back to the, what or just change it so that they are better yeah. And it's best to keep a record of your results but I don't because I'm very, very lazy. I used to.

You don't?

I don't anymore so when the doctors ask, so you know like what was your last result. I have to try and work out how to do it on my glucose monitor thing but it's not the best way because it's not just there. It can give you an average of your blood sugars over the weeks and the months and everything which I find very useful. You never used to be able to do that with the other, with the strips unless you're very sad and used to work it all out by hand but. Yeah there are advantages to the modern way of doing it yeah. 
 

To him diabetes control means to take over his daily care from his parents and to stop worrying...

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 there's 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 we'd end up arguing about it quite a lot. But, you know, now that I've taken over it for myself you know, there's 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.

He has a friend whom he describes as a 'first aid freak' and she knows exactly what to do if he...

You were saying something about when you go with your friends?

Yeah when I go out with my friends well yeah because you're, you're meeting new people and sometimes they, well, they won't know that you're diabetic and if you go out for a drink and you have one too many or something, not that it's ever happened to me of course. And you know, sometimes you're not in control. You know, you're in a car crash or something looking on the bright side of course then you know people have got to know got to know that you're diabetic. 

Do your best friends know what to do in case you have a hypo?

Yes, yes some more than others. I mean I have this one friend that's kind of first aid kind of freak and she, she'd know exactly what to do. She'd push everyone out the way just to get a chance to do it. But yeah I think. You know it's, it's come up in conversations so they, they'd have known. If they didn't then just call 999 I guess that's the easiest way. But if I'm, if I'm shaking. If it, you know, if it's just normal symptoms I mean, not worse case scenario if I'm just going low then they might hand me a few sugar cubes or something. 

Do you wear the'?

The diabetic pendant. Yes I do, not all the time. When I'm, when I'm going out with my friends and you know I'm, because most of the time, well almost all the time I have something with me. I've got glucose tablets on me at the moment, I always carry those around wherever I go. But yeah when you, when you're unsure whether you know. You, you're really tired and you want to go to sleep or something then you might go low during the night. And it's nice that the paramedics are going to, you know, they're going to know that you're diabetic when they find you're unconscious on the floor, yeah. 

His mother is more in tune with his diabetes than his dad who tends to see things more...

Not with diabetes, no because, you know, she trusts me and that's, that's nice as well. She well she trusts me most of the time. You know, she sees. You know, I have a really, big milkshake and she'll go, she know, you know. 'I hope you're going low if you're going to have that.' That kind of thing. But yeah, because my, you know when I go to the go and have my check-ups and they say, 'Well you're doing really well'. Then she knows I'm doing the right thing. And even if it doesn't, if it doesn't seem the right thing to her she'll know because I've told her so many times, that diabetes is different for everyone. So you know, it's your own diabetes and no one else's yeah.

What about your dad?

Well my dad. He, he's even more so he will stick to what he, [sigh] That's hard to explain. It's. He's like, oh you know, he's look, you know, he was so intro, you know trying to understand. He found it harder to understand, I think he found it harder to understand than my mum did. She was more, it was more natural to her and he, you know, he's very scientific kind of person and you know if there's a problem there's a reason for it. And there's a solution to it. It's that kind of thing. And he doesn't. I don't think he understands it as well as my mum does.

Yes. There is. Well, sometimes yeah we do disagree. I try and do it all myself so my mum doesn't really have any involvement anymore. She can't really remember, you know, because. And I've changed my insulin. I've changed my blood tester and everything so it's different to how we used to do it. So we disagree sometimes and she'll listen to what I have to say and we'll work it out eventually. 
 

Do explain to the patient that they are in control.

Well one thing is, well this probably sounds quite silly but when you're taking blood, you know, if they ask you to stop you'd better stop because I used to hate that. You know, you tell a doctor to stop and they'd still put the needle in anyway. And that used to really, really upset me because you know, you didn't feel as though you had any control over it and what else. You know it's hard to. Quite a long time ago when I was diagnosed I guess. I know, you know, it's got to be hard for the doctor and for the patient I guess but you've got to, you've got to talk to the patient. You've got to tell the person that's diabetic how. You know, no matter how young they are you've got to explain it to them so that, you know, they feel in control. That's what they need to, to hear that they're in control of it. They don't want to think that it's out of their hands. Even if you, you know, you tell their parents you've got to let them in on it as well so they know what they're doing.