Interview 20

Age at interview: 18

Age at diagnosis: 6

Brief Outline: Since the age of six and until recently her insulin regimen consisted of Humulin I and Humulin S twice a day. Recently, she changed to Lantus and NovoRapid because she likes the idea of having more flexibility over mealtimes. One week after she changed her insulin regimen she was rushed into hospital with DKA (diabetes ketoacidosis) and spent one week in intensive care, the same occurred again two weeks later. In all she has been in intensive care six times with DKA. Afterwards, she has tried different types of insulin but none seems to have worked. Four months ago she was put back onto her original insulin but on four injections a day instead of two. No more incidents of DKA have occurred but she worries about the long-term effects of ketoacidosis. Anyone changing their insulin regimen has to do regular blood sugar tests.

Background: Lives with partner, no children; works full-time in a pharmacy. Her advice to young people experiencing high blood sugar levels is to go straight to Accident and Emergency. 'It's better to be safe than sorry'.

She was diagnosed with diabetes when she was six and recalls getting all her early information...

And in terms of information, who has provided, who has given you most of the information about diabetes?

I don't, it's something that I've grown up with, like my mum and Nan were taught about, when I first went into hospital, so I as I grew up they were the ones that told me what it was about so I could understand it more. It's like my diabetic nurses were really good at helping me in the beginning, and at school the teachers taught the other children what diabetes was so I learned off them as well. So it was mainly the people that were close to me, around me, like teachers, my family and that. Because they were learning, they were teaching me at the same time. And like, it's the doctors when I had them, were quite supportive but when the one I had in child clinic I didn't have until the last four years of the child years. But that's where I got most of my information from, or I went to a few, my doctors were very good and they put me in touch with a few people that had diabetes that I saw a couple of times. And it's like, I didn't really have the internet so it wasn't things that I looked up then. But it's mainly people round me that helped me.

It was after leaving school when she really started doing her own injections.

Let's go back to when you were little because it seems to me that you were afraid of injections?

Yes, very. It was like first, it got really difficult getting used to having them. It's like my nan or my mum would give me my injection and literally I would run out of the living room and shut the door and I'd pull all the cushions off the sofa, throw them about, anything that I cold get my hands on. If my nan was in there or my mum's giving me my injection, so I'd hit them, kick, scream, you name it, I did it. And that, so, I, it was just getting used to because that's, so everyone around me being fine and that, I was, I did have the injections I found that quite difficult. But as I got older it got easier It became more a part of life and that But at the beginning I did find it very difficult and they, it was like my nan found it difficult giving me injections, like they would have to hold me down half of the time to give them else I would just, I wouldn't have had them otherwise. So that was difficult.

And when did you learn to inject yourself?

It's like they did it until I was up to about 13 or 14 really because it was just something, I found it very difficult, I only liked having injections in my arms by that stage. I didn't like my legs or anywhere else, and I find it difficult to control the injections by doing it in my arm and that. So my mum and nan used to still do it for me up to about the age of 14. It's like my morning one, they used to do while I was still asleep, so then it was like I was only having one injection a day because I wouldn't know I've had that one in the morning, because I'd have been asleep. 

It's like last, they used to give me the odd one, it's been the last couple of years that I've really, that I've left school and that I've really taken charge of giving my own injections. And really like, they don't do it at all now. It's like the only person that I allow to give it is my boyfriend, once every now and then. But apart from that, yeah, it's about 14 when I started doing my own.
 

Her insulin was changed to give her greater flexibility but she reacted badly to the new insulin...

I was there for a couple of months and then they decided to change my insulin, after 13 years. And after that, within 4 weeks, I was rushed into intensive care with DKA (diabetes ketocidosis). When my blood sugars just went totally off the scale. All my blood turned to acid and I was very, very ill with it. I was in hospital for about a week trying to get over that. I was in and out for two weeks and went back in with exactly the same thing. Blood sugars went off the scale, really, really ill. Since then I've been in five times with the same thing. They've tried changing all my insulins about but it just didn't work. Nothing really worked with it. The last time I went in they put me back on my old insulin but they put me on it four times a day so I was originally on two times a day. They put me on four times and since then I've stayed out of hospital for the last four months. Which has been really good. But it's just taken its affect on me It's like I've been down with viruses. I find it very difficult to get over them. I'm left very weak and not being able to do much, really. So it's had that knock on effect. 

They don't know what caused it at the moment. They keep saying it's viruses. They can't put their finger on it. All they can think of was the insulin I wasn't reacting well to. But apart from that, my blood sugars have, are stabling now but they did go up and down because I have been so ill. And that they have gone up a couple of times but not to a level where I've ended up back in hospital. So'

Which insulin were you originally'?

I was on Humulin I and Humulin S, cot, no vials I was on and the actual injections. They then changed me over to the NovoRapid and Lantus which, that didn't work. They put me on pen four times a day with that one but that didn't work so when I went into hospital'

Why did they change it, did they explain it to you? 

They thought it was better because I was on twice a day. I had to have them at the set times. They didn't, they wanted, the, me to run the diabetes rather than the other way round. They said, on four injections a day I could, if I wanted to lay in I could have my injection a bit later and eat a bit later whereas before I had to have my injection at 7 o'clock in the morning and then eat within half an hour. I had no flexibility. At night time I had to have my insulin at 5 o'clock and eat my dinner. So if I wanted to go out with friends and eat at 8 o'clock at night it was very difficult to do that. Whereas they said on the four times a day, if I wanted to eat at 8 rather than 5 then I could have a little injection at 5 o'clock with a small sandwich, then have my main meal at 8 o'clock with my main injection. So they said, it just, it helped me to control it more. 
 

In her teens she 'hated' doing blood glucose tests and found it particularly difficult doing them...

And what about blood sugar levels? Are you doing those?

Not as much and that. It's like some days I would go without doing them. I would do them when I felt like it really. And like it's not something I wanted to do. It's like, by that time of doing them over the last year my fingers are getting sore and I used to hate doing them. I used to really hate it. At school it was difficult doing it because I wasn't allowed my blood kit in class with me. It had to be kept in the office so if I did want to do my blood I used to have to go out of class. So I tended not to do it while I was at school. 

I never ate breakfast so I never used to do it in the mornings. So it used to be that, at night or if I wasn't feeling well, really, was the only time I did it. And apart from that, it's like now because I've been in and out of hospital, at one stage I was doing them 6 times a day. But my hands started, fingers, felt like they were about to fall off so now I've gone down to it twice a day, doing them, and then if I don't feel too well, I do them then. But that, back when I was younger it wasn't, I didn't do them too often [chuckles] really. And now it's not something that entered my head really because I didn't want to do it at school and that, I would be off at lunchtime with all my mates in the dining hall rather than thinking, 'Oh I've got to go to the office and take my blood and everything.' 

Why couldn't you do it in the classroom while'?

They wouldn't let me because it had needles, they wouldn't let me. And if it went missing with other children they'd take it. They didn't want to take that risk. So they wouldn't let me have it in the class or even in my bag. It had to be kept in the office at all times. 
 

If she finds ketones in her urine she drinks plenty of water and has been able to get rid of them...

I think the first one went in at 45 when they took it at the hospital. So my machine only it goes up to 35 and then it goes HI. They did it at the hospital and they said it was going up to 45. I had so many ketones my blood had turned to acid. And that was like I don't remember much about going into hospital I was totally out of it and that. They put me on drips and all sort because I was so dehydrated with it as well. They actually turned around to me and said they hadn't seen my blood in a dead person let alone someone that was alive, for how much sugar I had in my body. 

And how are your sugar levels at the moment?

At the moment they're OK. I had a high the other day but it's like the highest I've had is 15 and that, but they seem to be steadying at the moment. I'm finding it difficult, a little bit difficult because I've been so ill I haven't been able to eat at all. It's like I went for a couple of days, so I've been drinking Lucozade to get the energy into me. It's obviously full of sugar so I'm having to have more and more insulin to cope with that and push it back up. So, but they are steadying at the moment quite well. So, is just keeping an eye on them really. It's like I'm taking them more regularly now. I take them twice a day. And that, but, yeah, they seem to be doing fine. We just worry all the time because I know they can, can go up, within half hour and that, so it is a worry. As soon as I start feeling ill my blood sugars start to rise it, 'Oh my God, am I going to end up back in hospital again?' So it is a worry as soon as I start feeling ill or I feel a little bit high. So I'm taking my blood, I'm testing my ketone and having a bit of extra insulin if I need it. So yeah.

And what do you do if you find traces, do you have to call your nurse?

No, it's like once I've done that, I've checked my blood, it's a little bit on the high side, I just take a little bit of extra insulin. And what I do is I drink a lot of water because they told me that it flushes it out of your system. So I just drink plain water and I just keep drinking and drinking and drinking and most of the time I can flush it out of my system. And that, so it's just drinking plenty of water with, I don't have any juice in it nothing because, it's usually plain tap water.

So that would be their advice?

Yeah. Yeah. And it's like what I would do, so obviously if they start going up and they're not coming down and that, or they're like that for a couple of hours, it's like I literally, I drink about 4 or 5 pints within half hour, literally. I get down to as much as I can and, but, yeah, that's what I would do but obviously keeping an eye on it. I check it about every 10, 20 minutes when it gets like that and, so, but within like an hour, if it's still there I would then consult my nurse or just go straight up A&E. That's what I've been told to do now in my situation. For other people, yeah, just get onto your nurse or your doctor. And that, but water, it does seem to flush it out of the system and I have been able to control it like that.

Tell me, you have been experiencing numbness?

Yeah. Yeah. In a couple of my fingers since I've come out of hospital I've started getting numbness. I can't feel part of my finger at all. It's just nothing, I've had it two fingers, one of them's now, still having a little bit of numbness but I can feel most of my finger but the other one half my finger can't feel it at all. I touch something with it and I just can't feel it at all. And we don't know what's causing this at the moment. My GP's just keeping an eye on it and that's, because

Her mum and nan have been a huge support especially recently when she was in hospital.

And finally, how have your mum and your gran coped?

They've had it quite difficult especially the last couple of months because obviously I've been in and out of hospital and they've been there all the time for me. They spend all their time up the hospital. And my mum's been working while, during the day, and then spending all night at the hospital with me so they've found it quite a strain with it. It's like over the years they've seen hell, like they've been through all the difficult times with me and that hell, and my diabetes has gone, like the ups or downs, they're always there. They seem, if I'm in a hypo they're the first ones there. If I'm not well, they're always there. So they've been a big support to me. So, it, they've just, I think they've coped for my sake and that, if they didn't cope I probably wouldn't cope. But, yeah, they've been, it's like the last few months have been a real, real support to me. And that, so with being in hospital, or even when I'm out of hospital now and that, they're always there for me, if I need them, and helping me through. So.

And you can talk to them?

Yeah, yeah. It's like, as I say, my nan's my mum and my mum acts more as my sister, is how I look at it. It's like I've always been close to my nan. So I feel I've always got someone there to talk to. And that, so, they're always there for me to talk to whenever I need them. 

At primary school she stopped eating her snacks because her teacher would send her out of the...

What was the problem? When they put you in hospital?

My teacher at school didn't really understand about my diabetes, didn't want to learn about my diabetes wouldn't let me have snacks in the class, she let, made me go and sit outside in a corner somewhere which made me feel like I was being naughty or something because I'd been sent out of the class. Which she did to everyone if they had done something wrong, she would send them out of the classroom. And I got to the stage where I was hiding my snacks because I didn't want to go out to eat them. She wouldn't encourage me so I'd start hiding my snacks and, and that's so people think I'd eaten them but I hadn't. 

Then I was ill and the doctor turned round to my mum and said, 'We need to sort her blood sugars out. Keep her off school and let, but do normal activities with her. Take her shopping and like go and do activities with her to keep her active so we can keep an eye on her blood sugars.' And we were, told the school this and everything. So my mum took me into [city] one day and my teacher saw me and stopped the car, had a go at my mum and that for keeping me out of school and all this. So I went back to school and that, and my diabetic nurse said, 'If you're not going to take your doctor's advice, and not listen to your doctor, then we're going have to take it into our hands.' 

So they took me in to hospital so, and what, while I was in hospital, so they could keep an eye on my blood sugars, they used to send me down to the gym and that so they could keep me active. The diabetic nurse went into my teacher and talked to her and that, and when I came out of hospital, totally different situation. She kept chocolate bars in her drawer and she used to say, '[Name], it's snack time,' let me eat in the class. And that, but it wasn't my fault that I ended up back in hospital, it was that this teacher was being so funny.

And how old were you?

I was nine at the time Yeah, I was in Year Four, so I'd be nine when that happened. So, to me, it's like, obviously my diabetes was going down a bit because like my mum would go in my bedroom and find my snacks hidden all over my room because I was too ashamed to go and sit outside to eat them as I felt I had done something wrong. And that, because she wouldn't let me eat in the classroom and that, so I didn't want to eat them so I stopped eating my snacks.

She used to drink a lot but then she ended up in hospital. She still goes out but tries with the...

So every little thing I do, god I think if I do that, is that going to affect my diabetes? And I think a lot more about it, it's made me more aware of everything I do rather than just' it's like I still get on with things. It's like things when I go out down the pub and that I think a lot more of my drinking and that because I know it can affect it. Whereas before I'd think, 'Oh, it will be OK'. So I didn't know really' I knew what could happen but I didn't know what it felt like for it to happen. So now I know what it feels like and have complications and that and I'm much more aware of it. 

So it has changed that experience, that experience has changed your behaviour?

Yeah it has very much changed it. I look I look at things a lot differently now than I used to. Just life in general makes you think differently.

And regarding alcohol for instance?

It's like yeah before it's like I still have the odd one or two now, but I haven't touched a drink quite a few months. Whereas before I was going down the pub have five or six Bacardi breezers and that and not think too much about it. And that very next day I'd get up and my blood sugars would be sky high and I'd have to deal with the affect of a stinking hangover and trying to sort my diabetes out. And think, god having that much alcohol it could and my blood sugars go that high, it just go that bit too high I'd end up back in hospital. So it's that I have the odd one or two now that's literally it, the odd one or two, and that's because I know that having a couple more could then put me back in hospital again and that's so. 

It's easier because I'm driving because so I say to my friends to stop me drinking, 'I'll do all the driving, buy me three or four diet cokes between you down at the pub and I'll drive you around for the night', so that stops me drinking. Whereas I think if I didn't have a car and I was out and about, I'd be more tempted to have more than a couple. But I haven't had a drink in ages and like that's so I can have a good time without it. So It's like I want a bit of extra energy I just have an extra bit of chocolate so instead and it's better for your system. 

But it must be difficult to get used to, I mean because if you were socialising and everybody was drinking alcohol, around or now it's part of your every day life now?

Yeah it's like before it like with the new friendship group I'm in, they're not they're not a lot older but they're in their twenties and that most of them, so when I first stopped drinking I found I didn't know them that well. So I used to drink to socialise with them to get in with them. But now it's like I know them and I just let myself go and half the time they say to me, 'Have you been drinking?' I say, 'No, I've just been on the diet coke', because, and that. But I go around, and I'm in high spirits anyway so I join in and they don't look any different on me. It's like most the time if I do go to get the odd sneaky drink, they're the ones that taking it off me, telling me not to and putting a diet coke in my hand, because they're supportive like that with me saying, 'No you're not drinking'. And then I get annoyed with them so'

And so they have helped?

Yeah, oh they're, they're very it's like the few times I been down the pub and that they're like, 'Oh stay over the night' and my boyfriend's like, 'No, she's not staying. She hasn't got her injections on her' and so then the whole pub are kicking me out saying, 'Go home'. So they do really support me down there and that they're really good.