Lucy - Interview 05

Age at interview: 17

Age at diagnosis: 6

Brief Outline: Lucy has had type 1 diabetes for 11 years. Two years ago her mother was also diagnosed with type 1 diabetes. There was a period when her diabetes control overall wasn't very good. Lucy has been working with her consultant at improving her overall control by setting an action plan, like for instance 'losing weight'. She is feeling much better now.

Background: Lucy is doing her AS levels, plans to do A-levels and wants to go to university. She lives with her parents and younger sister. Ethnic background/nationality' White British.

More about me...

Lucy is 17 years old and has had Type 1 Diabetes for eleven years. She started to do her own injections a few months after her diagnosis because her parents found it difficult to do the injections for her. She says that her diabetes hasn't really been a problem except when she had highs and lows (high or low blood sugars).

There was a period, around the age of thirteen when she experienced lots of highs and her control of diabetes overall wasn't that good. Her insulin regime at that time consisted of injecting short-acting insulin every time she ate, plus a long-acting insulin that she had at night time. Her control began to slip when she began to forget her lunch time insulin at school but later on she was also forgetting to inject at other mealtimes. She thinks that short-acting insulin gives you lots of flexibility but in her view it might not be the right one to have when you are a teenager because it is easy to get out of the routine of injecting. This is because when you are growing up you are busy doing activities and wanting to be with friends. In retrospect, she says that her doctors should have asked more questions than they did about why she was having problems in controlling her diabetes. She also thinks that it would have helped to have attended clinic more often than every three to six months. 

Soon she will be moving from her children's clinic to a 'transition clinic'. She has been working with her consultant at improving her overall control by setting action plans; like for instance 'losing weight'. She is feeling much better now and her HbA1c (a way of seeing whether the diabetes is well controlled) is usually between eight and nine, although she is working towards 7.5.

Her diabetes nurse provided her with information about drinking alcohol and diabetes when she was around twelve years old. She considers that this information is very important and, as a result, she is not inclined to drink more than one glass of alcohol at any one time. However, she also sees it as a social limitation because teenagers are likely to drink and get drunk when going out.

She was forgetting do to her lunchtime injection at school because she was too busy and at home...

If you don't take your insulin you're gonna go high and, a lot of my problem when I was younger is I was very much forgetting to do my insulin.

Why?

Oh I think it was more to do with a lessons, up until I was about fourteen I done my insulin on time, I set my times so I did it every, sort of,  well so I done it every time I ate pretty much with my insulin, with my meals I had insulin, and that was, that was okay and then when I got to about fourteen I think I just, I got out of the routine and I, at school was a big problem for me 'cause it was changing my lunch hour and from what I'd been used to before I was having lunch later and I was taking on school activities and not like eating to about one, two o'clock and it was like right from my lessons so, I was eating and then forgetting to take my insulin and after that, to, for about a year and a half, two years I was in, I was out of a regimen completely and my diabetes got very uncontrolled and now I think I've got back into the regime and I'm doing a lot better for myself, my diabetes is in control so.

How many times were you injecting at that time?

At that time I was injecting every time I ate, say three times with my meals plus one before bed which was a different insulin.

And you were sort of forgetting to do the one at lunchtimes?

I was forgetting to do the one at lunchtime and then after a few months it was the one at breakfast time [laughs], and it was just, I'd gotten into a way of having my insulin put, perfect for all these years and then suddenly I changed and, it was, occasionally a few at my dinner time, occasionally my lunchtime, occasionally my bedtime and that caused a lot of problems for me.

And at school why were you forgetting to take, to take it?

I think it was more that I was in a rush, I was doing lunchtime activities, right I did gymnastics at school and they, they were finishing sort of as lunch hour finished, and it was a case of get dressed and have my lunch and get to lesson within five minutes and that was, it was a rush and I think that's pretty much what started everything. And then from there you just, I pretty much just kept forgetting when I was going out with friends or if I was staying over a friend's house, and then when I was coming home, like from a friend's house I'd, it's kind of you get out of the regime and it just, you can't get into the regime and so at home you have the same problems and you still forget and, in a way you kind of get lazy [laughs] as, you just forgetting to have your insulin.
 

She says that the advice and information given to her by the diabetes nurse have been most useful...

Okay so you were telling me about, that the nurses told you about drinking alcohol.

Yeah they explain to you when you're quite young, they kind of, I guess they want to filter into your brain before you get to eighteen and think 'oh let's go out and get drunk with all our friends' because I think once you go out and you get really drunk I think, I've been told you're more likely to become very drunk, very quickly if you've got diabetes and, also because you're drinking diet drinks, you go into' this new study said that if you drink diet drinks you're likely to get, drunk quicker, so, also  if you are drunk and you have a hypo you get, you're not gonna be as aware of your bodily functions and you, it can cause you to go into a fit, even a coma so it is important that you know what, that you know the effects of what alcohol's gonna do before you get there, so they kind of tell you every [laughs].

Has that information been useful to you? Have you applied what they have told you?

I've kept in mind what they said, I went to Barcelona with my school last year, or this year, and most of my friends got very, very drunk and because I told my friends I wasn't allowed to drink anything I'd have one alcoholic drink a night and that be it. They were all very, even when they were totally drunk they actually said, 'You have to only have one drink'. And they ordered me Diet Coke all night which was very nice of them, that I think if I had've, if I hadn't of known that alcohol would really affected me I may have drunk more than one glass and then probably got very drunk and not been able to get very drunk friends back to our hotel and they wouldn't have got me back to the hotel so, in a way it's done me good [laughs].

So that's information given to you early on was quite, is quite'

Yeah.

'useful?

I think it's very useful if you, you don't know what you're gonna be like until you're older ands, at the moment everybody around me is, well a lot of people around me are having a lot to drink, alcoholic-wise and, when you're offered a lot of alcohol you're very tempted to say yes but you know there's something inside you and you know that it's really awful to feel as if you're low and you've seen what drunkenness can do, make other people feel like, you don't wanna combine the com, you don't wanna combine the two so you do you stay away or you do choose to stay away [laughs] from the alcohol because that.

Okay and what about smoking, do you smoke?

I didn't smoke, I've always been told it's really nasty habit and we shouldn't do it, and I think that's kept me away but also the diabetes nurses, I can't remember the reason why they told me not to smoke but when I was younger they said, 'You shouldn't smoke and it's not gonna be best for your diabetes, it's gonna be beneficial to you if you don't smoke'. And I've kind of taken that on board and said, 'Right I don't wanna smoke, I'm not going to smoke, I'm gonna stay away from people who smoke'.

Do you think that having diabetes might have a kind of consequence for your social life or not?

I'm less inclined to drink because of my diabetes and I, my friends they kinda know that I'm, if I go to the party with them I'm gonna be the one who comes home sober which is a good thing for them because they've got someone who's gonna help them when they're throwing up everywhere but in a way, don't wanna go to all the parties because you know you're gonna be the one helping everybody else get home when they'

The only - and best - way to have sweets is after a meal, as a 'treat'. At one point she was...

Now how's your diet? You mentioned chocolate [laughs].

Yeah.

You mentioned sugar.

Around the same time that my insulin started to get out of regime I did start eating a lot more sweet stuff and it's, it is hard in school because a lot of people that, like, you have, we have cake lessons occasionally in school and that's right the end of the lesson whoever made a cake in the lesson  hands out their cake and you go off to your next lesson eating the cake, and that was, that was quite hard because it was something to keep you going to school but it was like you couldn't really have the cake, that's, things like, you see other people having sweets and you think, 'well I've gone five, six years without any sweets [laughs] and I really want to have sweets' and it's, it's very hard to, to say no to sweets, but you should [laughs] say no, it's like good to have, like one every now and again, like, when I was younger I did eat a lot of Skittles and they, they are very nice if, if you don't eat them a lot at time, if you eat them a lot at time you're not used to eating sweets and your blood sugars will go high and you will be sick [laughs] but in the end, what I've started doing is saying I can have ten individual little Skittles after a meal, provided I eat like all the meal that I was supposed to eat including my vegetables, and all like, you, you can have a piece of chocolate cake if it wasn't like totally, completely covered in sugar, you can have some chocolate cake after a meal and that wouldn't be as bad as just having chocolate cake in the middle of the day, sort of thing, [noise] for no reason so. But it's really important that you do eat the meal before you have the sweet stuff and, one thing that I was very upset with when I first got diabetes was the fact that I used to love grapes and grapes have a lot of natural sugar in and you can't eat, actually eat that many grapes [laughs] any more. But, a lot of people have fruit for breakfast and that's not always the best way, thing to have for breakfast, a fruit can sometimes, like grapes and other fruits can be more sugary and therefore cause problems with sending your bloods high and they don't have that much starchy food in them so, with breakfast it's best to have like your toast or your cereals and at lunch you can have your main meal but you can possibly, sometimes have something sweet like you can have, you can have for your fruits or, might even have like something small like a little piece of cake, but not anything majorly big 'cause that's gonna probably be, put your blood sugars up and, once they were up from there at dinnertime you're gonna have high blood sugars but you'd need to eat at dinnertime and, if you don't eat because you've got high blood sugars and you're feeling sick it's not the best thing because, blood sugars then gonna crash later and you're gonna go very low because you haven't eaten you're gonna feel very hungry so it's probably best to have your sweet at the end with your dinnertime meal.

Says that she usually saw a different consultant every time she went to the diabetes clinic. She...

What about the doctors? What about your consultant?

We do actually change our consultants a lot and that is a big problem because you go and see, you go and expect to see the same doctor and you don't see the same doctor, it's, like they do see a, you do see a different person and they have, they don't know anything about you and they're like, they, once I, she did go to the hospital and I sat outside the room for about forty-five minutes while the doctor read my file, and I went in and she was like, 'Do you know what happens if you do this?'. And, 'D'you know what happens if you get lumps?' And I think she was, she was a new doctor and she, kind of overlooked the fact that we have been told a lot of things before, and she, I think she was, she was trying but I think it was a complete [laughs] waste of time when I went to that appointment because, we talked more about the effects of diabetes than what had happened in my diabetes, and then the next time I went I had another doctor again so [laughs] it wasn't the best.

And you talked again about diabetes in general or '?

I think we talked more about it in general, I used to have the very good woman as my doctor, I think she was my doctor [laughs], and it was [name] and she was absolutely brilliant she, I saw her every time and, she remembered things from time to time, and she had remembered, like if I'd said that I had planned to do this, not only had she written down she'd like said to me, 'Have you kept up with this? And have you kept up with things that I've said that I'd keep up with?' But now it's, I think we've had it quite hard trying to find a consultant to stay.

It's important for diabetics to have a big say I think in their treatment because the treatment is a lot around them but I've, I know I've been quite lazy with my insulin and taking it and I think in many ways my doctors should've picked up [laughs] on that a little bit earlier, but for them to have seen it I think they should've asked me a few more questions like, 'when I have my insulin am I, how much shall I thinks getting in?' or 'if I'm sure that I'm, my insulins getting in all the time?' and just things like that would've been more helpful in a way, and I think probably it would've been better if I could've had someone just checking on me a little bit more regular than three months because I was finding that a lot of my appointments were close to six months appointments rather than three months so.

When she moved school she initially had a bad experience but her teacher encouraged her to give a...

At school any was anybody unkind to you? Did they know that you had diabetes, that you have to inject?

The diabetes can, everyone kind of found out through an integrated way, like, you get, when we first, when I first started this school a few people thought it was strange, I started with two people who had known me since I had diabetes and one of them kind of went in and she thought it was very cool to tell everyone that I injected and thought everyone got this idea instantly that I was like a drug user and that I was totally stoned all the time and they didn't realise really what was going on, but I spoke to my Form Tutor and she spoke to my form when I got there and she explained about my diabetes and she helped me to sort of explain to everyone there about what to do if I collapsed and, how to get through things and if I looked really pale to make sure I did my blood sugars and, like from then I got some books from my diabetes nurse and they, they were just pamphlets but they were very useful and I handed them out in my form room and people read through them and they sort of got an idea of what it was about and most of them hadn't actually heard of diabetes at that point so it was quite educating for them I think, but my main friends at the moment they, they've, they joined the school after that date so they've, in a way they've just kind of accepted it we've never really talked about my diabetes, but they, they join, they sort of joined a group that we were in and they, they noticed I was doing my insulin and they've asked me what it was, and they've asked me why I've done it but I think schools have been, they've, they've been very good, they explain what diabetes is in very small terms [laughs], but the explain it enough for people to understand that you need the insulin to live and, my friends they've, they've accepted that I need the insulin and they've accepted that I can't have sugary stuff all the time, so  when it comes to people's birthdays if they're, my two closest friends, they don't buy a lot of chocolates for me so, but they're really good they keep an eye on what I eat but.

They, if like they buy chocolates for each other they sort of, they wait until it's like lunchtime and, then they say would, would I like a little like Minstrel or something at the end of the meal and they make sure that I don't eat too much.

She has told her friends about her diabetes and what to do when her blood glucose levels goes...

And they know that you have diabetes, do they know what to do in case you go low or?

I've spoken to my friends about that, I went away with my friend last year and I, she didn't know most of what we had, most of what I'd told her a few years ago about my diabetes and she, she did sort of make sure, she was very worried because if something did happen to me, we're in a foreign country and, the local language, she hadn't learnt the local language I had so, it wouldn't, she thought it wouldn't be that good [laughs] if I passed out, but she kept an eye on me and she sort of made me check my blood all the time and she made sure I done my injections and, when we actually, she went out one night and the food was awful and it, because it was a school trip the, none of us had taken money out for the meal we were like driven out all this way to this meal and it was really, really bad and because it was already paid for none of us had any food, any money on us really, and she like took me out and made sure I had a proper meal and she was, she was a good friend, so my friends like unless I really sit down and talk to them they probably wouldn't be that sure what to do and I think they do worry a lot if something did happen they wouldn't know what to do, but they do get me to check my bloods when they think there's something wrong so they're good [laughs].

When you have your highs you can feel very, very ill and you don't wanna go to school and, you don't want to do this, and you can get a little bit angry with people but, you, my friends have been really good they've helped me get through it and they've helped me become less angry [laughs] with them when I'm really high, but also they've been good when I'm low because you can get again really sick but you, you sometimes can't make decisions and you just become really unaware of your surroundings and they're, you do need friends to help you then 'cause you can cry as I do a lot when I have a lot of lows but, and sometimes just need someone there that can keep an eye on you and keep you and keep you well.

I think in the past is, is kind of helped you make friends, me make friends because they, they see 'Oh what is she doing, she's injecting herself'. And they come and ask you what you're doing and you say 'I've got diabetes and I have to inject myself regularly and sort of look after myself'. And, you get talking and then you make lots and lots of friends [laughs] through your diabetes, but I think.

'Cause I've been on lots of days out with my diabetes team and we've made a lot of friends with that, they've, they've been really good friends, my best friend is diabetic and I met her through the diabetes camps and every year we went away to different activity centres like PGLs, and we do rock climbing and have lots and lots of fun, that's got less and less in the recent years because there's a lot of problems with funding and they kinda question should we be going on activity weekends or should they be doing research into the way they, ways they can help us, so.

Says that her mother became less protective and more understanding after she herself was...

My mum's got diabetes she's had it.

Type one?

For the past two years, yeah type 1 and but we didn't actually know anybody went, had diabetes in our family until I was diagnosed and then a few months later we found out that my mum's cousin had developed diabetes type 1 as well, and  [eh] about four or five years ago, my mum's aunt also developed diabetes so we've kind of got the impression that it comes from her side of the family [laughs].

So your mum developed diabetes after you?

Yeah she developed it about eight or nine years after me, and, she took, I think she kinda gave me the impression when she got diabetes that she wouldn't have got, she wouldn't have understood the diabetes as much, if I hadn't have had diabetes because they, they do tell you that you're gonna have hypos and they're gonna happen like this, but they don't really say well you're actually gonna feel really bad and you're gonna feel very, faint and you could feel really hungry or you could feel really empty and, they sort of suggest that you might do but linking it together is a whole different thing from reading it.

So you talked '

So.

'a lot with your mum'

Yeah.

'about it?

She, in the past she was very worried incase I'd have hypos in the night and things like that, and she actually used to get me up and two in the morning to test my blood sugars [laughs] and sometimes it'd be the only time that I'd do my blood sugars, which was, that was when it was really bad but she looked, she tried to look after me but you don't wanna be woken up in the night and find out that you have blood sugar the six and you're mum's worried that you've got blood sugars are three instead and is trying to feed you all this food [laughs], it's not nice to have a bowl of cereals in the middle of the, the night and then have to have breakfast a few hours later, so I think it made her realise a bit more about the diabetes.

After your mum was diagnosed with diabetes did you notice sort of, kinda any change in her about your diabetes?

She became a little more, less protective she used to be really protective and I think she kind of realised I am grown up now and I've known how to deal with it all my life and, I've got used to having the hypos, I've got used to having the highs and, in a way I'm better off because I, I know, I get an idea what my blood is most of the time and I think she's realised that when I was having these really bad lows when we were out walking that it took me a little longer than five minutes to recover from them 'cause it's supposed to take about forty-five minutes to fully recover from a hypo which is where your blood sugar's low and it was before she was kinda like, 'Well you sit there for five minutes, eat this chocolate, eat this biscuit and well, have this drink and have this biscuit and we'll, we'll be ready to go in five minutes time and...' She's kinda realised that you still can have shaky legs from the hypo like five, ten minutes later, twenty minutes later so, I think she's kinda realised that I did know what I was talking about all these years and it wasn't just that the doctors said, 'Well this is gonna happen'. And it didn't happen sort of thing so.

Teenagers need regular and frequent appointments. Doctors need to ask more questions about how...

It's important for diabetics to have a big say I think in their treatment because the treatment is a lot around them but I've, I know I've been quite lazy with my insulin and taking it and I think in many ways my doctors should've picked up [laughs] on that a little bit earlier, but for them to have seen it I think they should've asked me a few more questions like, 'when I have my insulin am I, how much shall I thinks getting in?' or 'if I'm sure that I'm, my insulin's getting in all the time?' and just things like that would've been more helpful in a way, and I think probably it would've been better if I could've had someone just checking on me a little bit more regular than three months because I was finding that a lot of my appointments were close to six months appointments rather than three months so.