Interview 03

Age at interview: 18

Age at diagnosis: 9

Brief Outline: There is a thirty to forty per-cent chance that an identical twin will develop type 1 diabetes. Both brothers were diagnosed within 3 months of each other in 1996. The first to be diagnosed did experience symptoms but the other twin found out he had type 1 diabetes following urine & blood tests. Their great-grandmother had type 1 diabetes. Insulin regime' rapid-acting analogue (Humalog) using prefilled pen three times a day and long-acting analogue (Lantus) in the evening. Now they are attending the young persons diabetes clinic & are seen by the consultant on a one-to-one basis rather than together as they were when children. Both brothers appreciate their individual consultations.

Background: Identical twin brothers. First year university students, when at home live with mother & stepfather. In 2004 they both completed a World Challenge project spending one month in Kyrgyzstan. Both feel that diabetes is not an obstacle & you can do anything.

His twin brother was diagnosed with Type 1 diabetes three months earlier so doctors tested him...

Interviewee 1' Well we were diagnosed when we were nine, I was diagnosed first just before Easter. The doctors had they were curious as to whether [my brother] would be diagnosed because it was different for twins. And so they ran some tests and about four months later.

Interviewee 2' Three months.

Interviewee 1' Three months later [my brother] was diagnosed a diabetic. When I was first diagnosed they, the, I went to the GP's office and they run a blood test on me. And my blood sugar was above 44. And so they got me straight into the hospital for three days.

So that they could control it and show me how to inject and everything. Straight away I was put on two injections, two injections per day. But I just couldn't inject myself at first so I had to get my mum to do it.

Did you have any symptoms?

Interviewee 2' No, I didn't have any symptoms. With a twin, it's a 60% chance that if one's diagnosed the other will be. So they just decided they'd test me before the symptoms started.

Interviewee 1' Yeah, they caught [my brother] early on. But, if I'm going to speak frankly I was very thirsty all the time, I wet the bed quite a lot I just needed the toilet, needed a drink all the time and so my mum thought it might be a bladder or kidney infection or problem so she took me to the GPs office and they ran a blood test and found out that I was diabetic. 

OK.

Interviewee 2' Which we weren't expecting, obviously.

Interviewee 1' Yeah.

You weren't?

Interviewee 2' No.

Interviewee 1' It was a bit of a shock. My mum said it had crossed her mind but otherwise she didn't really think much of it. But it was a bit of a body blow, I think.
 

They like the young adult clinic because they get individual consultations and the clinic seems...

Interviewee 1' The diabetic nurses and specialists at the hospital. They've been very helpful and they gave us all this information that we have now. We've recently moved to the adult clinic and that's about 10 times better than the children's ward that we were at.

Interviewee 2' Yeah, it's much faster. Definitely. And they understand that, you know, going off to university and, there's no screaming kids, it's much better. 

Interviewee 1' Definitely. 

Interviewee 2' A much nicer building. And they understand, you know, we're going off to university, so we might have to may, probably not being able to meet some appointment dates, that kind of thing. We will be given priority when we come back. If someone's been booked in but that's the only date that we can make it they'll be moved so we can, so we can make it.

So you're not going to change'?

Interviewee 2' Clinics, no.

Interviewee 1' No.

Interviewee 2' No we might have to, when we go to university'

Interviewee 1' General practitioners' clinic '

Interviewee 2' Yeah but when we go to university we might have to meet some GPs there. Temporarily.

Hmm.

Interviewee 2' But when we come back, that will be our main clinic.

Interviewee 1' Yeah, and just check up with the GPs in whichever university we're going to, just once a month or once every two months, just to check we're still OK, but when we come back here then we'll still be going to the adult clinic that we do now.

Interviewee 2' Oh right in the paediatric clinic it was a lot more they tell you'

Interviewee 1' This is how it's going to be.

Interviewee 2' What you're going to do.

Interviewee 1' Or your parents would go in with you and they'd talk to your parents and you'd just sit there and go, 'Yeah'. But in the adult clinic you'

Interviewee 2' You go in one at a time. It's, I go in, [my brother] goes in. You're not in with each other. And then you discuss it with the doctors or the nurses and they say, 'What do you think about this?' It's much, much better.

Interviewee 1' You've got a lot more'

Interviewee 2' Interaction.

Interviewee 1' Yeah, they're always, they were always there when we were in the paediatric clinic. 

Interviewee 2' Hmm

And you were seen, both of you together?

Interviewee 1 & Interviewee 2' Yeah.

Int

They say that sometimes finger pricking hurts, that taking care of your fingers is very important...

Interviewee 1' Yeah. I was doing two blood tests a day. And, every time I injected I did a blood test. 

Interviewee 2' That hasn't really changed now. I mean, we're only on three blood tests a day now but four injections, so we do four injections a day one before breakfast, one before lunch, one before dinner and we used to do one before bed that, which was a longer acting one but we changed that when we went to Kyrgyzstan to get used to the 8 hours time difference we started to do them, started to do them'

Interviewee 1' Earlier.

Interviewee 2' Earlier and we're now doing them at 7 o'clock in the evening, and that's a lot more convenient and it's stabilised our blood sugar because we could be going to bed anywhere between '

Interviewee 1' Eleven and three.

Interviewee 2' Eleven and three O'clock in the morning.

Do you find anything difficult or unpleasant about checking your blood sugar levels?

Interviewee 1 & Interviewee 2' Not really.

Interviewee 2' Occasionally when you hit a pain centre, it hurts.

Interviewee 1' Yeah, it hurts.

Interviewee 2' And you've always got to be aware of staying away from the tips of your fingers. 

Interviewee 1' Because you can lose feeling in them.

Interviewee 2' Yeah.

Interviewee 1' If you do, like, I've got calluses, well we both have, on our fingers.

Interviewee 2' You've got to stay away from the middle of your finger and the tip of your finger.

Interviewee 1' Yeah.

Interviewee 2' Because if you're typing or writing, tapping something, then obviously your fingers are getting a lot of'.

Interviewee 1' Pressure on them. 

Interviewee 2' Pressure on them. And you've got to stay away from, from using them too much.

Do you have to record'?

Interviewee 1' Yeah.

Interviewee 2' We do. They used to give us books about books to keep our readings in and we'd keep them with us. But now we just print out sheets of paper to do'

Interviewee 1' Just spreadsheets and they just have a space for like the date and the day.

Interviewee 2' Yeah.

Interviewee 1' And then you've got space for your blood readings, to, to write that down in, so you've got like, Before breakfast, After breakfast, Lunch, and so on. And then, how much insulin

They talk about those situations in which they might not inject and end up with high blood...

How do you feel?

Interviewee 1' Annoyed really. It's like, because it, I've done that quite a bit really My readings used to be quite high at dinner and I couldn't think of a reason why, I mean, they've levelled out now but I think it was the fact that I was, I'd eat a bit, I'd eat at lunch, or I would skip out lunch, so I wouldn't do a lunchtime injection because I'd get up late.

Interviewee 2' But then have snacks.

Interviewee 1' And then have snacks, like'because I got hungry and then'

Interviewee 2' biscuit or one slice of toast, and you're like, 'Oh, that's probably not worth injecting.'

Interviewee 1' And then, that doesn't need an injection.

Interviewee 2' But it's always worth injecting 

Interviewee 1' You always, always have to inject for everything you eat.

Interviewee 2' You need to know when you're high. Like certainly if you have a snack or something like that, or, maybe a bar of chocolate, even though you're not meant to, you should do a blood test and then injection, always.

Interviewee 1' So, I mean, if you're high, generally you'll feel quite highly strung so you get annoyed with people really easily. 

Interviewee 2' Yeah, definitely.

Interviewee 1' All the time. 

So, there are things that you have to adjust in order to keep your'?

Interviewee 1' Yeah. Yeah, like sometime you can do, you can get away with doing three injections a day. If you get up late and you have breakfast and then you don't have lunch or any snacks but sometimes you have to do 5 or 6 because if you, you get up and you have breakfast and then you have lunch and then you feel like having a snack or something, and then, then you do an injection for that and then you do an injection for dinner and a long term one, and then maybe have something after dinner as well and do another injection. You just have to look at everything you eat and think, 'What's in it?'

They've been told to drink a lot of water when they go out, to keep checking their levels and to...

Interviewee 2' We've thrown a lot of parties at our time at, at secondary school. And so obviously we've got a lot of experience with drunk people you know, just, we know what to do. And we know that drinking, for a diabetic, we know what it does. It makes you go high and always, always, always you've got to watch out for your blood sugar, when you go out drinking. 

Interviewee 1' Yeah. Because if you get drunk you can go high and it, you're not going to watch your insulin. You're not going to'

Interviewee 2' It dehydrates you.

Interviewee 1'  It dehydrates you. And you drink more. 

Interviewee 2' And there are always some sort of drinks that make you go higher than others. Alcopops, WKD, Bacardi breezer'

Interviewee 1' Because they contain a lot of sugar, to mask the flavour of the alcohol and stuff.

What has the doctor told you about'?

Interviewee 2' They've always said, 'Watch your blood sugar,' 'Drink a lot before you go out, as you're out and when you get back drink a lot of water.'

Interviewee 1' Eat, eat '

Interviewee 2' Eat a lot.

Interviewee 1' Before you go out.

Interviewee 2' Eat before you go out. Eat when you come back. Have a lot of bread. Some cereal maybe. And that will help to stop the effects.

And how many units can you have?

Interviewee 2' Good question. 

Interviewee 1' I've no idea. It's more down to personal tolerance. 

Interviewee 2' Probably, but always, always watch yourself because a diabetic has a lower alcohol tolerance than a non-diabetic.

They got good advice from their consultant about adjusting their insulin just before they left...

What was their advice?

Interviewee 1' Well, I mean the last time we spoke to them, before we went, was on the day'

Interviewee 2' Day, day before'

Interviewee 1' Before we left.

Interviewee 2' 'we left.

Interviewee 1' Like, probably five minutes before we walked out the house.

Interviewee 2' We left it a bit too late.

Interviewee 1' Yeah, before, probably 5 minutes before we walked out of the house we were still talking to our consultant on the phone and like arranging how we'd adjust our insulin. So, she told us to cut our long-acting insulin, our Lantus, by 20%. So I went down to something like 45 and [my brother] went down to about 40. And then when we were up in the mountains we cut our ratios in half, so we went'

Interviewee 2' Down to 1'1.

Interviewee 1' 1'1 as opposed to 2'1.

Interviewee 2' And you're still carbohydrate counting. Eating a lot of carbohydrate. Obviously, keeping blood sugars up. Porridge every day, for breakfast which was horrible. 

Interviewee 1' It was horrid.

Interviewee 2' But obviously breakfast is the most important meal of the day. So, hang on. OK. Well, yeah. Breakfast, the most important meal of the day'

Hmm.

Interviewee 2' Obviously. Porridge every day and then for lunch, it was a bit of an amalgamation of stuff but flatbreads, stuff that wouldn't go off. Tinned foods. And obviously we had to carry all the rubbish down with us as well. So we had to get lightweight stuff.

Hmm.

Interviewee 2' But stuff that would give us a lot of energy. 

Hmm.

Interviewee 2' But we went on to 1'1 ratio so obviously I was happy we were doing something physical, something that would, that we could actually feel, like a 1'1 ratio rather than, 'Oh, you've got to watch your insulin intake.' Something that would stop us from going low. Rather than, 'Maybe you shouldn't do an injection here.' 

When did this'?

Interviewee 1' It was much better.

In, this was the first time you went into something like this.

Interviewee 2' Hmm.

Interviewee 1' Yeah.

How did it make you feel? And '

Interviewee 1' It was brilliant. It was, it was'

Interviewee 2' It was such a sense, sense of achievement. It was absolutely excellent. Yeah, I mean'

Their mother still worries but they have been encouraged by the whole family to pursued their goals.

Interviewee 1' Well my mum was very worried when we were first diagnosed. My dad was too but he wasn't there so we couldn't judge his reaction, because he was, like I said, he was in America. But my mum was really worried about, about the consequences. After a few months I think it started, she started to settle down but she still, like sometimes she'll still look at us when we're doing our injections and just, you can see that's she's thinking, 'You know, I wish they didn't have to do that.' She really, she really wants us to not have to do it. But we've leant to live with it and there's'

Interviewee 2' But that's what a mother's for, isn't it?

Interviewee 1' Yeah. I mean'

Interviewee 2' She worries...

Interviewee 1' There's, there's worse thing, there's worse things that we could be afflicted with, so diabetes is, is fine. They've, never given us reason to doubt that we can do anything. But mum and dad have always, and, and my step-dad, they've, all three of them have always been there. And my family, cousins, aunties, uncles. They've always just told us to go for it and no, give no reason to doubt ourselves.