Interview 24

Age at interview: 17

Age at diagnosis: 14

Brief Outline: When he was first diagnosed he was on Novomix 30 in the morning and Mixtard 20 in the evening. Initially he hated injections but has become used to the routine of doing them. He has found that he is less likely to forget his insulin injections if he does them before a meal rather than after. Doctors changed his insulin regime to Lantus and NovoRapid but he did not like the new regime and asked to be moved back to the original one. He prefers a daily routine of set mealtimes and snacks and two injections rather than having to inject every time he eats. He stopped smoking soon after he was diagnosed.

Background: Full-time student; lives with parents and three siblings; has a girlfriend. Says that his parents do "nag" him but he knows it is for his own good. All his friends know what to do if he has a hypo.

He didn't know anything about diabetes when he was diagnosed and wants to help other young people...

I was diagnosed with diabetes about two and a half years ago now, two, three years ago. I was fifteen when I got diagnosed. It was quite nerve-racking really because I was. My symptoms were going to the toilet quite often like, sort of like every half an hour sort of thing. I had blurred vision, my pupils were quite large. I was really dehydrated. I was always drinking and so in the end my dad decided to take me to the health centre and they thought I had diabetes which scared [laugh] me quite a lot actually. They even offered to [sigh] take me in an ambulance down to the hospital but my dad said that he could take me and it was all fair enough. 

At the beginning you said that you were quite scared when they told you at the GP's surgery that you might have diabetes. Why were you scared, Do you remember?

For the same reason I'm doing this actually because I didn't know a lot about it. Diabetes sounded like a scary word, you know to, something to be frightened of. You didn't, I didn't know what it was and to be honest when you don't know what something is you do tend to worry about it. And I was quite frightened but I was, like I said I was helped by the nurses and everything and they let me understand what was going on.

So they, the nurses and doctors have provided you with most of the information?

Most of the information I got. I was offered help groups and stuff like that but I didn't, I didn't go to them. But I would advise you to go to them actually. I didn't go to them because I'm more of a shy person, myself. I don't like going and standing up in front of a lot of people but I think it would have helped me a lot to. If I went and did that, stuff like that [sigh].

He hadn't been confident enough when first diagnosed to join a help group but says that it would...

Do you think there needs to be more information about what could happen if people don't, if young people do not manage their diabetes?

I think that it needs to be easier to get to. I mean like what you're doing now. You're setting up a website and everything. With me I didn't know about any websites. The only thing I was told about is a help group which I didn't feel confident enough to go to at that precise moment in time.

So it would have been a lot of help for you to have a, kind of a website to go and find out?

Yeah It would have been a hell of a lot easier for me to go on a website by myself and just go, oh, you know that's his experience or that's her experience. Do you know what I mean. I'll have to remember to do that. I'll have to try and remember to keep that in mind and stuff like that.

What would you like to know about other young people's experiences of managing their diabetes?

I'd just like to know how they got on with it. How, experiences they've had. Whether they've ever forgotten to take their hypos stuff out with them. Just, just so I know that I'm not the only one. Do you know what I mean? Just put that at the back of my mind to think, 'Oh, you know I'm not the only stupid idiot that's done that. Do you know what I mean. I'm not the only one that's forgot, you know.

He developed huge respect for his diabetes team because he was well cared for and also because...

They are so helpful. I tell you. If I didn't have them I don't think that I'd be alive today to be quite honest with you I think that I would have been. Because it's like they, they tell me something but they don't just tell me something as if to stand over you. You've got to do this. You've got to do that. They stand and they tell me that [name] if you don't do this, this is going to happen. You need to start doing it. It is for your own health and they befriend you, so to speak. They want to be your friend. The want to make sure you're alright and they, they help a hell of a lot. They tell me everything that I need to know.

So you have responded to that?

I have a lot of respect for them yeah.

When you go to the clinic you go on your own or you go with one of your parents or?

I used to go with my mum and dad before I turned 16. I used to go with either my mum or my dad. Now I'm more confident about it. I'll go on my own and they'll tell me stuff that I need to know and stuff that I need for myself. I mean before I wanted my mum there because she likes to remind me a lot [laugh] and stuff. But now I feel confident enough to go on my own.

When I first became a diabetic I was going to this place and they, they were helping me and that but now I've started college I can only go. I've only got the option of going two days a week. And the diabetic people will only go to certain places at certain times and certain days. So I've had to go over to [hospital name] now which is where I met you.

And you go there every three months?

About every three months yeah.

And the relationship with the nurses there and the doctor is? How do you find that?

Well I've only just started there. I've only had one appointment with there at, there at the moment. But when I was going to my other one I had a great relationship with them actually. They, they seemed to remember me. I remembered them. And, and it didn't, it didn't so much feel like they were an authority figure, figure. Do you know what I mean like when you're in school you've got all those authority figures standing over you having a moan and stuff like that. They felt like they were my friends, they like they knew me like I knew them. We had a discussion about their kids. One of them was pregnant and I had a discussion with her about her baby and stuff.

They're very open people. They like to have a chat and to tell you what their life's like and for you to tell you, them what your life's like. I mean they knew most of my girlfriends because I'd had, I talked to them about her. And I respected them and they, I think, respected me and we were all friends. It just felt as if it was a friendly environment.
 

He hated doing the injections at first, but with the help and encouragement from his family,...

Was it easy to start injecting yourself?

I absolutely hated injections. I detest them. Going to the clinic to have blood taken I absolutely hated it and it was really like nerve-racking, thinking about, 'Oh I've got to inject myself. I got to put a needle inside me', stuff like that. But to be honest it becomes a daily routine. And I think you do, that's one of the things that you do tend to get used to. As long as you follow the nurses instructions and they tell you exactly where to do the injections, how to do them and as long as you follow that it should be relatively painless because it is for me now.

In which parts of the body do you inject?

There are several places actually. In my stomach, you've got like a little arch round your belly button apparently where you can inject. It's sort of painless. Top of your leg, you can also inject in the top of your arm but I haven't got enough fat or flab there to inject [laugh]. And one of my mum's favourite actually was in the top of your bum but I stopped her from doing that because she enjoyed it too much [laugh]. She enjoyed giving me a little bit of pain in the evening times [laugh].

So she to start with, she helped you?

To start with my mum injected me a lot because I didn't feel comfortable doing it. I mean, and I do thank you, thank her for that but everyone needs to get on their own sometime and do it themselves so.

So for you it was sort of that kind of a slow process of your mum helping you and doing it and then sort of you taking over slowly?

Yeah it was a, it was quite a quite a slow process. I mean it's not, it's, to be honest with you it's not an easy thing to get used to. You have to take it one step at a time. You could, you can't jump ahead and think, 'Oh yeah I'm, I can do this' and all. You have to take on everything that everybody says and everybody trying to help you. You have to take it all on board because if you don't [sigh] well you're screwed basically. You could just can't do it by yourself. You need a lot of help from your family. Even my friends helped me. I mean as soon as they found out they asked about what they can do to help me when there's problems. How they can notice it when there's a problem wrong with me. I mean some of them [laugh] even wanted to inject me but [laugh] I think that's for their own pleasure though [laugh].
 

Says that his mother 'nagged' him and that he now has a routine to make sure he doesn't forget...

Supposed to do them every day, twice a day. Before, before about a year ago I used to be forgetting it all the time. Not, doing one injection, forgetting to do the next one.

Why do you think you were forgetting?

It's just the whole change of lifestyle [sniff]. When you become a diabetic you change from being able to go out with your mates to wherever you want, to having a set routine. Like I said before you have a set routine. And you have your tea. You come home. Have your tea and think' Oh I'd just rush around and do this and then I'd just rush around and do something else and I'll go out with my mates and by the time you've got out with your mates, you're all hot and flustered and you can, 'God I'm high. I've got loads of sugar inside of me. Damn I forgot to do my injection'. 

And it's really stupid to do because a few months ago now I got salmonella poisoning which I could have died from. I was in hospital for about a week. I could have, I could have died. And that was quite nerve-racking. But maybe I wouldn't have got it as much if I'd had a more controlled count. If I'd have been taking more care of myself, so to speak. Because you are a hell of a lot more prone to getting diseases like that.

What helped you to, now to remember to do your injections?

Back to the nagging thing again, my mum. She whenever I have something to eat they always say. '[Name] I didn't see you do your injection'. I'm thinking, 'Yeah I know I didn't but damn'. Do you know what I mean? It's, it. They remind you and it's also. It becomes a daily routine. When I come in of an evening time I come in and close the gate straight away. When I come in and have my tea I come in and do my injection straight away. It becomes a part of your lifestyle. You just remember to do it automatically in the end. Takes a while but you do remember.

So you do your injections before your meal?

You do them before or after but I would advise you do it before because with me I usually end up. If I forget so I do it after my tea but by that time I've already got a full stomach of food and it's quite painful. It can be quite painful to do it in your stomach after that. So I would advise you do it before you, before your meals.

And that has worked for you?

That works for me, yeah. It's doing it before my meals it's my routine.

How do you respond when they nag you?

[sigh] Truthfully I do get agitated and quite angry with them and I do have a lot of arguments about, with them about it. But I get angry with them probably because of me not doing something right. And it makes me feel like an idiot basically. Letting them tell me that I'm not doing something right and because when I first got diabetes it felt like. It felt to me like I'm the one that's got it not you. Leave me alone to do it, sort of thing but you'll learn they're there to help. They, they're going to help you whether you like [laugh] it or not sort of thing. And basically just take it on board.

He found his fixed insulin regimen a pain but prefers it to the flexible one.

But I got on with it. The hardest thing to deal with was, for me was, the change in food and the routine. There, the, when I were first got diagnosed I was on Mixtard 30 in the morning and Mix, Novomix, no sorry Novomix 30 in the morning and Mixtard 20 in the evening. And that changes because that was twice a day and then I changed to having it four times a day every time I ate which didn't work out for me because it wasn't. 

The routine was a pain, pain and then all of a sudden the routine just went out the window and I found that even difficult than, even more difficult than the routine was. But I got on with it. The extra food was quite nice actually. I enjoyed the extra food that I got to eat with all my snacks in between meals. The hardest thing was cutting down on chocolate but I soon learnt that just because you have diabetes doesn't mean that it rules your life. It means that you just have to mix and match. Whereas before I had a whole chocolate during the day and all that happened was it got changed and I'd say I had half a chocolate during the day. Just it doesn't mean that you have to quit having all the food that you need and stuff like that. You can, what I was always told by a diabetic nurse is, was to rule your diabetes, don't let your diabetes rule you. 

I think the routine actually made my life better. Because before I was eating whenever I wanted to. You know what I mean. I was pigging out quite a lot during the day and stuff like that but when I got the routine it actually helped me to bring my life together sort of thing. I was in at certain times to eat. I wasn't late home and stuff like that, you know. Because I had to, obviously I have to have a snack in the evening time so I can't be too late in coming home in the, of an evening. And to be honest it actually helps a lot.

Describes his fixed routine as a pain but at the same time recognises that it has made his life...

How long do you think it has taken you to get used to your life with diabetes?

That's quite difficult actually because to be honest you get used to it but it never really. You get used to it if you know what I mean. You tend to think, 'Ok you know, I've got diabetes. I've got to deal with it.' And you get used to the everyday routine but there's still that point in the back of your mind and I think it'll always be there. You know you're slightly different to everybody else. You have to be home in certain time for meals. Do you know what I mean? You can't just leave until like eight, nine o'clock at night and go in and have your tea. You have to be in at certain times and it's a routine that you have to live with or obviously you won't survive. Do you know what I mean?

So you find sort of the routine is one of the limitations perhaps or'?

I think the routine actually made my life better. Because before I was eating whenever I wanted to. You know what I mean. I was pigging out quite a lot during the day and stuff like that but when I got the routine it actually helped me to bring my life together sort of thing. I was in at certain times to eat. I wasn't late home and stuff like that, you know. Because I had to, obviously I have to have a snack in the evening time so I can't be too late in coming home in the, of an evening. And to be honest it actually helps a lot.

Well when I first became a diabetic I was on breakfast then I had a snack before breakfast and dinner. Then I had my dinner, then I had a snack before dinner and tea and then after tea I'd usually have a snack about 9 o'clock.

And which type of insulin was that?

That was on I was on Novamix30 in, before breakfast and before tea and then I was on another Mixtard20 at night.

Why do they change the insulin?

They had me on those two because well those two because I think it was better for me at the time. Just finding that I had diabetes they wanted to get it as low as possible as quick as possible which is why they put me on that. And then after that they started changing my insulin to see what I would do most best on. I mean from that I went on to NovoRapid which was before, every time I ate I had to do an injection which I found horrible basically. I didn't like it whatsoever.

Tell me more about it because some people have a different experience and that is what this project is all about. I mean tell me about that?

Well it was, it was weird actually. When I was on the insulin before I went onto the Novorapid I had a routine. And although I hated that routine it was a routine that I got used to. Then when I went on to Novorapid my routine went out the window. I could, I could, well relatively eat when I wanted to again and I found that, that just didn't work for me. I didn't have the routine of remembering to do my injection if I, if I had a Mars bar I had to inject with it. Whereas before if I had a Mars bar after dinner I didn't have to inject with it each time. Do you know what I mean? I, it was all included in my dinner and I just didn't like doing that many injections a day [laugh]. It was, I just didn't like it so I went back to the Novamix 30 which is twice a day which works for me.

He says that girlfriends tend to nag once they know he's diabetic and that he makes sure he's...

In your experience how have girlfriends reacted to when you tell them that you have diabetes?

They don't really mind I don't think. I mean they're, they're' girlfriends can be sort of like your parents, they, if you, once they know about it they'll, they'll nag you because they care as well. But it, it's no harder to get a girlfriend with diabetes than it is without. I mean obviously your sex life is still the same. I mean obviously you have to be more careful but everything is basically the same.

Why do you say 'be more careful'?

Well for instance you, all that exercise I mean like when your upstairs in your bedroom you have to make sure that you know when you're having a hypo for when you're obviously having sex and stuff like that. Obviously you're more prone to diseases and stuff like that so you have to make sure you use protection and just general stuff like that really.

They told me that if I didn't control my count that when I get older I could become impotent. And obviously not have the sex life I've got now which is quite scary because you know, every bloke likes to have a bit of love, do you know what I mean. And it was, it was frightening and it made me think, oh, you know. I don't want that to be out of order, you know. I, I'd better start controlling it. Do you know what I mean. I don't think my girlfriend would have been too happy at the time either. So you got, you got to think about it, you know. You've got to be sensible.

Ok so that message got to you loud and clear?

Yeah that got to me loud and clear, you know [laugh]. Straight away.
 

He knows his parents nag him but at the same time he realises they have developed almost a second...

I got a lot of help from my family. You know, because you need your family to support you to feel comfortable with what's going on. And one of the things that you'll learn is your mum and dad do nag you. They, they will nag you a hell of a lot. You've got to do your injection. They will remind you so much but they're doing it for your own good. They and [sigh] they know this but I never tell them. They do, they do it for your own good. They don't mean to nag but they, they care about you and well they, you know, they want, they want you to survive just like anyone else. Do you know what I mean.

But at the same time you have got this support can you, do you talk to them if you feel sort of, kind of low or'?

They

If you have a problem or'?

They have this like, I don't know if all parents have this but they have this secret like knowledge. It's quite strange. They'll always know when there's something wrong with me. If I'm having a hypo they, they'll see it in my face. They're, they'll know what's going on with me and they'll say, '[name] are you alright? You need a can of coke' or whatever. If I'm having a high they'll say, '[name] you look high'. Do you know what I mean. 'Come and chill out and maybe take your count' and stuff like that [sigh]. So they know. I don't know how but they know.