Interview 01

Age at interview: 21

Age at diagnosis: 15

Brief Outline: Diagnosed in 1999, age 15. She was on an insulin called Human Mixtard that she injected twice a day and had to eat every three hours. Now she is on Lantus, an analogue long-acting insulin that she injects once a day and on fast-acting insulin; NovoRapid that she injects when she eats. Shortly after the interview she was due to go and try an Insulin Pump.

Background: Student; lives away from home; practices several sports including surfing and has travelled a few times to far away places. Says that she does not let diabetes affect her life and that she has carried on as she would have done anyway.

She was rushed to hospital by the school nurse. She felt shocked and sad when she was told she had diabetes.

Well I got diagnosed when I was sixteen. I reckon I'd been having the symptoms probably for about a month, maybe probably just over a month. I got it in January, I got diagnosed in January and I'd had a cold at the end of the term, Autumn term, at school, and it just developed I guess. I had got over my cold but I stayed really thirsty all holidays. I know noticed that I was really thirsty and I was getting worse and worse and needing the loo all the time. And because it was quite gradual, I didn't really notice the change. I just thought, 'Oh I'd never got over this cold', although obviously, it's not symptoms of a cold at all. 

So I got back to school a few weeks into term, it, I was still so abnormally thirsty. And I eventually went to see the school nurse and she did a few tests. Had to pee into a glass, which I found really embarrassing. That is all I did actually. She then sent me back to my lessons. And an hour or so later, the school secretary came running in, saying, 'Go down to the nurse's, to the van they want to take you to hospital'. And they wouldn't tell me why and I was terrified and whole classroom was like, 'What's happened?'

So I got taken down to the, the doctor's clinic in town, by the school nurse, who although she told me that she knew, she probably knew what is was, she wouldn't tell me anything. So I was really scared.  

And I got to the doctor's surgery and I had to do some more tests, wee again in a pot and they did a blood test. And then they came and told me that I had diabetes. 

It was a massive shock to me. I had, I knew nothing about diabetes at all, so it was big' I just didn't really know. I was just suddenly like what is it? And I burst out crying. And I couldn't get hold of my parents, so I felt kind of pretty lonely, I guess. The only thing, when they told me that I had diabetes the only thing that flashed into my mind was, some person or neighbour years ago who had diabetes, and that was all, that was the only connection I could make and I remember for her it was this terrible, terrible thing. But it really isn't as bad as I initially thought.
 

She felt she couldn't absorb all the information she was given by staff on the children's ward and needed time to make sense of it all.

And then I went into the children's ward and I, the diabetes specialist came and saw me and then that's where I was told everything. So it was quite a long time before I was really told what was wrong with me and the school had been trying to phone my parents but they were both away and so my housemistress, who was an awful woman, came came to mother me but that was the worst [laughs] thing I could have had, because I hated her. 

So it was quite scary at first but the nurses in the hospital were great and [uh] when my parents got there they told me I had, I stayed the night in hospital and I saw the dietician and the nurses and the doctors and they tried to explain everything. 

How much were you taking in at that point?

I don't know, I think, I took in quite a bit but obviously not everything. Some things were quite a muddle and I remember being really unsure still the next week what I could eat and what I couldn't, I guess, yeah.
 

She was upset by a booklet she saw in a supermarket because it was so blunt about possible future complications.

Where did you get your information from?

Once I found, when I was in Canada I was in a supermarket and they had a by the cash point they had a whole load of these magazines, or booklets, on how to deal with certain ill, illnesses or just guides on, there was one on diabetes and I thought, 'Oh, that'll be interesting, I'll just have a look, see what they say.' It, it was more aimed at people who don't have diabetes, just to educate on what it is and I was just like, it's 99 cents or something, I thought, 'Yeah, I'll buy that, see what it, see what it says.' And it had some recipes in it and it had, you know, so I was read that and I was all quite interested and then I thought it was quite interesting and then and helpful and then I got to the section on the complications and it was just, I remember it was so blunt. And it came out with all these really shocking stats and I think it was probably aimed more at the public to make them realise diabetes is, is an issue, it is a serious problem and we need to sort it out, rather than at a diabetic, because it upset me quite a lot. It was really, yeah. I could see why the doctors try not to be too open about that because it is quite a, a shocker when you find out [laughs].

How old were you at that time?

I was 19 or something.18. 19.

So they hadn't explained..?

They had explained to an extent. Yeah, no, they had by then told me I'd got to be careful. I knew, I always knew I had to be careful of my feet and I had to be careful of my eyes and things but this booklet and a, well, it was very, very, oh. I can't remember the statistics, but it was just coming out with all these little shocking statistics of how many people are blind by the time they're 40, and how many people have their feet amputated and how, I just, I didn't want to know. I want to know that I have to be careful but I don't want to know that I could be walking around with heart problems and blind and no feet and, it's not that bad. And nowadays, maybe however long ago when the control was worse, that might be more true, but now that insulin's getting better and hopefully with pump therapy becoming more and more common, the complications are going to be far rarer. Hopefully. Fingers crossed again. 
 

Talks about what happens at the clinic each time she goes for regular check-ups.

How often do you go and see the care team at the hospital?

Every, once every 6 months and when I go I'm generally there for a couple of hours. Lately it's started to be really quick. I used to be there for about 4 hours, just lots of waiting, seeing the dietician. You start off seeing the nurse and go and have your general tests done. They take your HbA1C or, I can't remember what it was called the big blood tests and weigh you and you do a urine sample and you do a little blood test and then you see the doctor and then I might have my eyes photographed and then I see, down to the nurse and sometimes I go and see the dietician. Someone might check my feet, do a thorough, thorough check. But I often go and see the nurse in between the'

So it is twice a year?

Hmm.

And the nurse you see more, more often?

Yeah. Generally. It depends. When I started off on this new insulin I'd be seeing her a lot. Now I probably see her every couple of months, every three months.

Talks about how she learnt to do carbohydrate counting when started using fast acting insulin.

Explain to us what carbohydrate counting is.

Counting because, with the rapid acting insulin you're giving yourself the exact amount of insulin that you require for how much you've eaten and so you have to work out how much carbohydrate you've eaten how many grams of carbohydrate you've consumed and the, say for me, for every 10g of carbohydrate I eat I give myself one unit of insulin. So I work out a slice of bread is, I know is about 15g of carbohydrate and a size of, bowl of cornflakes, say, I would normally eat is about 40g, so I know to give myself 4 units of insulin for a bowl of cornflakes and so you're, at the beginning when I started carbohydrate counting they gave me this big book with photographic atlas to carbohydrates, or something, it was called and it had on each page six different pictures of different portion sizes of a certain type of food. So the first page was porridge and it had six bowls of porridge. One massive, going down to small. And, so if I had bowl of porridge I'd get my book out and be like, 'Hmm. Which, which bowl does mine tally to.' And then it tells you how many grams is in it. 

And then it, it goes through loads of different food types, different cereals, and then potatoes and pastas and pizzas and rice and apple pies and it has some random things in it. It was so funny, and my friends just thought I was insane. Going out for supper or we were eating in the university canteen where there are hundreds of people and I would sit there and get my book out [laughs] It was like, 'What are you doing?' It was quite embarrassing. I got teased quite a bit and people were saying, 'Why do you bring it? Surely you don't have to do that.' And, and the peer pressure nearly stopped me but you, you've got to.
 

Thinks that she does more blood glucose tests than necessary per day but she finds it difficult to tell if she is going high or low.

Do you check your sugar level?

I checked it so often. I probably do, check my sugar levels five times a day. Which I think is quite unusual. I don't know if many people check it that much. But as the years go on'

Hmm.

It's becomes less easy to tell. At the beginning I could really feel if my sugar levels go up or down, I could, as soon as it started to fall at all low, I would be like, 'Oh, my sugar level's going down,' but your sensitivity begins to wear off. So now I'm far less aware. And sometimes like last, yesterday I did my blood test thinking I was having a hypo and I just wanted to check and in fact it was really high so I just, I've got quite poor at that.
 

Explains why an insulin pump will suit her and what an insulin pump does.

Well, insulin pumps are being, beginning to be used more and more frequently. They're getting a lot more reliable and so are being used more but not good for everyone. They thought it was specifically good for me because I've got quite an erratic lifestyle being a student and being quite active. I, as I said, find it difficult to control my sugar levels. They're swinging from high to low all the time, however hard I try and control it. And that's exactly the kind of person that insulin pumps apparently are suited to. Or people who are doing night shifts and so they're less, they're cycle is kind of mucked up because they're working in the night and then in the day and So they're on insulin pump which is a continuous, rather than doing injections I'll have a little canula tube going into my tummy attached to a reservoir of insulin which has got a, it's about a pager size, they tell me. It's about, I don't know, just smaller than a mobile phone. And it continually trickles insulin in down through the tube into my, into me. I think every couple of minutes a drop or two goes in so it's very, it's a lot more realistic, a lot more like a real pancreas would release insulin than in lumps throughout the day. At the moment I give my background insulin, the slow acting one in the evening at 10 o'clock and it's meant to take 24 hours, it's meant to be absorbed evenly throughout the next 24 hours. But realistically it's never going to be exactly even. It depends where I inject it. Different parts of your body absorb it differently. And I don't really vary it because it lasts for 24 hours I always give myself 16 units and I try not to change that ever. But because it, because if you change it that's determining how much is in you for 24 hours and you obviously have no flexibility. But with the pump you can, you can literally just press a button and go, 'Oh I need'' If you, if I'm about to go and do exercise I can put a bit less in. If I'm going to be, well when I eat I can just put lots more in. It's a lot more flexible then and there. I can adjust it to my immediate needs. If that makes sense.

And I can, I find generally in the morning my insulin, my sugar level goes up a bit higher In the evening it might fall lower. In the night it's definitely lower. I occasionally have hypos in the night when I really shouldn't. So, throughout the day your body actually needs a different amount of that background. With the injections you can't vary that but with the pump I can set a profile. You have a 24 hour profile so during the night it might be giving you less and then in the morning it might give you more. And so it has a pre-determined'

Her friends don't understand much about diabetes and so didn't see the need for her to alter her lifestyle and diet.

I find one of the big things, a lot of my friends aren't necessarily that more sympathetic but they don't realise how big a thing it is for me. And a lot of people are quite na've about diabetes, not many people know the real facts and don't realise that there are these complications when I get older. So they think that [purring] because I started off, when I started at Uni I didn't want it to be really affecting exactly what I was doing and, so I let myself just carry on and I was, I was, I'll really get a grip of it. I wasn't that bad but I was like, moment and then I'd go out and do things as I normally would and I wasn't thinking about my diabetes the whole time, trying to get it under control. Because I managed for the first year or so my friends don't see why now I'm suddenly going, 'Oh, I've got to get, take it more seriously. I've got to really get a grip.' And they're like, 'Well you were fine last year, what, why are you now? Why do you have to, why do you have to make such a, you know, be so strict with yourself?' 'Why can't you have a chocolate? Why can't you come for a run now? Why can't you, whatever?' And it's difficult to tell them, 'Well because if I don't I might not have eyesight,' and you know, you don't want to be so melodramatic. And a lot of my friends don't realise that it is, there are these long-term effects. So it would be good if the, if everyone's educated about it a little bit better, I guess. 

So they'there is a need to promote public awareness?

Yeah, because I think people think I'm being a bit of a hypochondriac sometimes when I'm probably being the opposite [laughs]. 
 

When she was sixteen she felt confused about what she could and couldn't drink but now she finds she can drink as long as she keeps checking her blood glucose levels.

And what about drinking alcohol? Do you?

To start with I was told I couldn't have more than one unit a night and I was a bit worried about that and lots of my friends went, 'Oh, what are you going to do?' because I sixteen so I hadn't really been out and drunk much before. And I was like, 'Oh, I'm going to be missing out forever,' but I, and, I find it's all right. I go out and I may have quite a few drinks. I just have to be really careful and check my blood tests all the time. Because when you're drunk the symptoms of being really drunk for other people appear to be the same as having hypo. Like if I'm having a hypo when I'm drunk I might say, if it got really bad, I've never done it, but could pass out, people would think, 'Oh, she's just really drunk.' And also the more drunk you get, the more careless you get so you might forget to eat or you might forget to do your blood test and see what's going on. And alcohol itself, I have to be careful what I drink because a lot of drinks are really sugary so I couldn't have Alco pops or beer, I can't drink. Or a sweet wine or anything. So I can't have a lot of drinks and the alcohol itself, it's really confusing, but alcohol is meant to bring your sugar level down, I think, in a different time span though to the sugar in the drink making it go up so if you had a sugary drink it would rise and then the alcohol would kick in and it would fall and then, I think, might make it rise again. I don't know. It goes up and down which is really bad. So, when you have drunk you have to be careful that you make, you make sure you eat before you go to bed because the alcohol can make your sugar level dip in the night. I always make sure friends, friends I'm with know, know what to do and know what's going on and I generally feel quite safe.

So you tell them in advance?

Yeah. But I've never got drunk enough that I'd be sick or pass out. I'm lucky. Some people, some of my friends are sick but after a couple of drinks, but luckily I never have been sick and if I was sick then it would get complicated because obviously you're throwing up your food but you've given yourself insulin for and it's not good. I've been told that if I'm sick just from illness or anything more than twice in one day then I have to hospital and be on a drip. That's happened to me once before, I had flu. Yeah, I was sick twice and I was on a drip for three days or something. 

She left her insulin behind in a hotel in Panama and had an eight hour trip back to get it.

How was your experience of travelling abroad? Where the system might be different?

It was fine. I never went for long enough. I was only away for three or four months and the NHS here can give you supplies for up to three months. So I never really had to go and get my supplies from, in a foreign country. Which was a relief because most places make you pay or, I think, in Australia actually they had a way of charging it back to the NHS, I can't remember. But generally it's been fine. I was in Costa Rica with my sister and I cleverly, I had, because insulin has to be kept in the fridge, or it has to be kept cool, I had these packs, called freo, what is it, you get, I can't remember what they're called, freo-something. They're like gel bags and you dunk them in water and they absorb the water and they're meant to keep your insulin cool for four days or something but I wasn't, I wasn't trusting them completely because they weren't that cool so whenever I got to a youth hostel I would put my insulin in the fridge which I guess is a good idea. But we'd been in Panama and then we crossed the border to Costa Rica, and we'd had a kind of eight hour bus journey and we'd had a nightmare crossing the border and we'd finally got to our destination and I went to see my injection and I was like, I'd left my insulin in the fridge in the hostel back in Panama. My sister wasn't happy at all. There were no, the nearest doctor's was about four hours away and I found out the insulin they have was completely different and it was just a nightmare. So I ended up having to go all the way back and get it. Which was actually fine. I had enough with me to last me a couple of days. But '

So you had to cross the border'?

Yeah, that was just me being dappy, should have, you know, it wouldn't happen to anyone else but me, I'm just dappy [laughs] so'