Interview 31

Age at interview: 18

Age at diagnosis: 7

Brief Outline: After diagnosis she was put on Humulin S insulin and she had to inject two times a day at mealtimes and also had to have about four snacks a day. She found it annoying that she had to eat even when she was not hungry. Her insulin injections were increased to four a day to try and improve her blood sugar levels. By that time she was playing golf at a high level and found it difficult to maintain good control. She remembers that her blood sugar levels could go as high as 25 and her lowest were around 12. Physically she felt tired and unable to concentrate plus it was difficult to inject in the middle of a tournament. She and her mum started to look for an alternative to injections and looked on the internet and found an American website that provided information on Insulin Pumps. Her GP didn't know much about Insulin Pumps and she was referred to a diabetes care team in London. On assessment she says that her control is much better since she is on the pump. On average her blood sugar levels are between 7 or 8 and never higher than 13. And her HbA1C's have come down from 12 to 8.

Background: Full-time student; lives at home with her family. She took up golf at the age of 11. She won a golf scholarship and is travelling to the USA in August.

Her sport was her main motivation to use an insulin pump.

Any particular reason why you decided to use a pump?

Yeah it was my golf basically because I started out golf when I was around 12. And I was doing injections on' I was getting really tired and couldn't concentrate. And I was eating having to eat all this stuff around the course. And then I had a tournament and it was like one of my big junior tournaments, and I had to do my injection halfway round. And I found it such a nuisance because in golf you can't have slow play. It was interrupting the players behind me and also it's not a sterile environment out on the course is it. So it's not good for your injections. And I just found it a complete nuisance. So I got to a point whether it was either, I carried, carry on and have injections because at that point I was having to go up to six'five or six injections. 

So what insulin were you taking?

Humulin. 

The same one?

Yeah. Same I did ' I had the same insulin I think, from the start until the beginning of where I was on the pump. And they said I was going to have to raise the injections that I was doing to try and level my blood sugars out. And that was not going to happen if I wanted to carry on my golf. So me and my mum went onto some websites. We went to a few American websites, trying to find some sort of alternative to injections.

On the pump you can regulate you know, if you're going to do three hours of exercise, you can reduce the amount of insulin you're going to have over that period of time. And we changed to Humalog a fast acting insulin. And it's in inserted into me all the time, so I have a constant flow of insulin. And every hour I get a certain amount of units. And if I eat anything, I give myself some insulin through that. I only have to change it every three days. So I have to change the site you inject every three days, which is fine with me. And just refill up the insulin. It's just a lot easier, you know, if you go on holiday and it's a lot hotter so you might need a bit more insulin. You can change it and things like that. And if you have a pizza, for example, I don't think I ate very many pizzas before, because it sort of gives you a whole load of carbohydrates and stops and then gives you a whole load another two hours later. But on the pump, you can regulate it and say, 'Right, I'll have the units now and then in two hours I'll have the other half'. It's just a lot easier. I can eat most foods now. And I can have the odd sweet if I want it, you know, as long as I bolus for it.

So your diet was restricted before?

Oh very, very, restricted because I mean' the only time I ever ate chocolate was before exercise. And I never ate sweets. I had to have a certain amount of carbohydrates at breakfast, lunch and dinner. I wasn't allowed anything over it or under it because with the Humulin, you only had one lot of insulin. So if you went over what you're going to eat, you'd go high and things like that so. But now I can eat chocolate bars when I want to. And then I can eat as much as I want at dinner or as little as I want and then I just bolus for that amount after I've eaten it. 

She talked to other young people already on insulin pumps and had a trial session before deciding...

Do you remember much about going to London to this hospital and getting started? Because presumably they have to give you a lot of information before you go onto the pump?

Yeah. We went to a few sort of seminars things. There was another girl, I can't remember her name, but she was on the Disetronic pump. So I went to see her and she told me about what her life had been like and things like that since she'd been on it. And I tried out that one, just had a look at it. Went to ask the bloke about that one. And then I went to see the Medtronic one, just because I wanted to see which one I would favour the most. So we did a few things like that. Spoke to a few people and then went up to the [hospital]. I spoke to a young athlete that was up there at the [hospital] on one. He was on the Medtronic and that was another turning point for me. And then I just had a few sort of group meetings up there. And they gradually build you into it so you can check which one it is you actually want. And then they put you on a trial. They put some water in it and you try it out and see if that's what you want. Then you decide whether you want it or not and then they'll put you on to the actual pump. And they'll do, they, we had training for about a month, just to check that we were getting the right basal rates and that I was doing the injections right, so they made me change sites while I was there. Just to check that I wasn't getting air bubbles and things like that in the way I was doing it.

So you and your mum'together?

Yeah. It was me and my mum, did everything for it.

And the person who was giving the training was a diabetes specialist nurse?

Yeah, she was a specialist nurse and it was also the head, Dr [name] he did that as well. So there was, I think there was another person, yeah there was another person that works for Medtronic up there as well. So there was three of us and they just looked after us for the, the sort of the year really. And I went up there and checked up, I think it was about every three months. Just to check that everything was on a roll and they were on hand on the phone whenever I needed them. 
 

She has been using an insulin pump for almost 6 years and says that it takes several months to...

You had I had to go through a lot of carbohydrate counting. And when I first got the pump' for the first month or so, you had to workout how many units it was to each carbohydrate and things like that. And so gradually you build up the knowledge, so you know right if I have that piece of bread it's this certain carbohydrate so it's that amount of insulin that I need. So that took about a month or so to get that. And also to get the basal rates of how much insulin to have every hour because I mean it changes all the time. I mean at first I started off with just one' the same unit every hour and then it changed to I had a certain amount' a certain few hours in the night when I only did less insulin. And that's just to basically trial and error with blood sugars and things like that. I did have to do quite a lot of blood sugars for the first month. Just to make sure that I was getting the right amount of insulin through the night and things like that.

So you and your mum were learning about how to manage your blood sugars?

Yeah we were both learnt to do it in the first few months. And then I kind of took over [laughs] and she stood back. 

How long after you were put on the insulin pump you took over sort of speak?

It was about three or four months afterwards and I kind of' didn't want my mum help. I wanted my mum's help but at that age you sort of want to go and do it on your own. And I didn't want to have to rely on my mum all on the time. I thought I've got to do this myself. And I started to learn you know, in myself, how I was feeling you know, this right you know, I do this and do that and that. And I knew what I was doing and then if I did get in a problem, my mum knew about it anyway. She was trained up on it and so could help me.

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, there's 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. 
 

Now that her control is better she feels more confident about telling others about her diabetes...

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, there's 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

She explains how her mother has been more relaxed since she started on an insulin pump, though...

It was after sort of a year or two then I started to, once the teachers understood what was going on that's when I started going on a bit more school trips. But I mean, our school trips stopped after a couple of years anyway [laughs] but, yeah, I was able to go out and my mum was a bit more relaxed about it. 

Hmm.

But I mean, once I went on the pump she wasn't worried about it really because it's fairly simple, you know mechanism if I had a hypo or something. And I was less likely to have hypos, you know, and put the pressure on the teachers. But [background noise]'

She was more relaxed?

Yeah. She was a lot more relaxed when I was on the pump. You know, because it was a case of when I was going to have a hypo, it could be, it could be any time but, I mean, now, the chances of me having a hypo are fairly low as long as I control [background noise] my diabetes. So'

How easy or how difficult was for your mum to let go? Because she has been very involved it seems to me?

Yeah, she didn't like it at first [laughs] I sort of like, I kept saying to, 'Leave me alone, leave me alone. Let me do it myself. I have to learn to do it myself. I have to do it on my own.' And I don't think she liked that at first. And, I think she's got used to it now but sometimes I feel like, I say to my mum, 'Oh, can you help me?' And she will. But I think she's a lot more relaxed than she used to be. Which I find a lot better because I've got bothers and it's a lot easier on them for her to be focusing on them, not so much on me. But she still worries, you know. That's another thing but [laughs]'

[Laughs] What is she worried about? Anything in particular?

I think she worries when I go out [laughs].

All parents worried about that one.

Yeah, I think she just worries that I might have a hypo or go too far and have a real bad hypo and she's not there to help. But she does, she does stipulate that before I go out, if I'm meeting new, if I've got new friends or something, they know what to do if something happens and that they, they know the procedure. And she says as long as they know that then she's fine with it. 

And you tell them?

Yeah. I have, I make sure that I tell all my friends what to do if I have hypos if I collapse. Or, what I need to do if I say to them I'm feeling a bit funny. But they all know what to do now, so it's a lot easier now.

Give children information on how to cope. Give them a chance to talk with other children, if they...

I'd probably say, give a bit more information on what life is about, the life that they're in now. You know, the age group that they're in, if they have just started a new school give them information on how to cope with it. I mean, a lot of kids, young kids won't ask a lot of questions. And I think it would be better off for you to tell them about it than to say, 'Well what are your thoughts on it?' Because they probably won't talk back and say, you know, this, and this and that. 

Offer them the chance to speak to people, don't put them in a situation, don't' say, 'Right, I'm, you're going to this interview with these other kids and you're going to meet them.' Ask and say, 'Would you like to meet this person?' Because a lot of kids might say that they don't want to be put into that situation, they'd rather go into it if they want to. You know, if they feel comfortable in that situation.

Give them information on what devices there are out, don't just say, 'Oh, there's this one device, this would be good for you.' Just say, 'Look there's all these different devices, this is what this is, this and this and this is how you find out about it.' And they're more likely to sort of look back and think, 'Oh, I'm going to have a look at that one and that one.' And take it further from there.