Interview 17

Age at interview: 16

Age at diagnosis: 10

Brief Outline: He has an injection of NovoRapid with his breakfast, lunch and dinner and one injection of Insulatard in the evening. Last year he had problems in managing his diabetes. He was experiencing many hypos and felt awful and unable to do his surfing. He reduced his insulin dosage and while he was avoiding hypos he started to experience highs (hyperglycaemia). He says that his diabetes has been more difficult to control since becoming a teenager because of all the hormones and other changes. His attitude now is that despite all the problems you have to keep fighting at controlling your diabetes in order to live a normal and healthier life. Says that he knows about the consequences of poor control and does not want to end up blind or plugged into a dialysis machine.

Background: High school student; lives with his parents. His passion is surfing and tries to do it everyday when the waves are good. Mum promised to buy a surf board if he had a good HbA1C result and he did!

Recently he changed to another insulin regimen because he started to have problems controlling...

What type of insulin are you taking?

NovoRapid and Insulatard.

And you take four injections a day?

Four injections a day. Three of NovoRapid for your breakfast, lunch and dinner, and then the Insulatard keeps you going - keeps it for the rest of the day, keeps it at the main rate, and you just take your NovoRapid for your meals so covers for that and'

Are you happy with the insulin you are taking or have you talked to the doctors about other type of insulin, or have they told you about'?

I haven't been on this for that long so I can't really judge it but I just try and work out the same pace but I've had one good test with it so far, which is a good start but it - it's mainly - if you're having problems getting your HbA1C right it's probably a lot to do with your age and the hormones and everything. And it's just really hard to get it thingy because when you're a child it's really easy, because your body's just there. As soon as you change from puberty your body's going everywhere.

They have told you about it at the clinic?

Yeah, I've been reading it in a magazine that loads of people have problems with it and I just reckon that it's your age and all that.

They changed the insulin type recently?

Yeah, last year.

Last year?

Yeah.

What were you on before? Do you remember?

Humulin and Humulin I.

So that was just two injections a day?

Yeah.

Depending on how he feels he might do up to 12 glucose tests per day. He is trying very hard to...

I need to ask you a few things about measuring control. How often do you test your sugar levels?

One to twelve a day [laughs].

One to?

Twelve, which is pretty bad. You should only do about four a day but with - it's just, really, with hypos and seeing where it is and everything, and just checking where it is most of the time, sort of regulate, but it's up to you really. I'm just a person who likes to be on the safe side, instead of the end of the cliff and but if you don't want to do tests that's fine. You can depend on - you can tell when your sugar levels are right then that's good.

Has this always been the case, or you are testing more now than before?

Oh I've tested all the time, because I just like to keep a check on it, so I know what's going on, and everything, so when I am on my own I know whether I have test or not or I made I'm probably about five, go and get some munch and munch out.

Do you record your reading?

Yeah, yeah, yeah I always record it because it helps you in the long run.

Anything you find difficult or unpleasant about doing the finger prick?

It's easy, that's nothing. That's the easy part of it, I can say that the jab in the night that's the easy part. 

Would you say the same thing for the insulin?

Yeah, it's all easy. That is the easiest part.

So what would be the more difficult part?

Regulating your sugar levels. That's the main problem. It's the key to everything. But it's just trying to find the treasure chest to put it in [laughs].
 

Says that he is learning to deal with hypos but that it isn't easy.

What do you do?

Well, I've been reading mostly quite a lot of diabetics over eat, and if you over eat it just - when I over eat it just makes me feel even more rougher, because you feel bloated and you're all feeling really shaky, and hot and flustered, and just shaking like a dog and you just want to get over it quickly so you just over eat but that kind of makes it worse because you feel bloated, and it's still in you, and it takes longer. And I discovered last night when I had a hypo, about two o'clock in the morning I didn't have a lot to - I was about 2.1 and couldn't see anything, so I had a little can of coke, and I had an apple and toast, and one biscuit, and I was all right after that for the first time in ages, that was a bad hypo, but it was the first time it didn't get me really bad, and I was quite proud of that. I woke up this morning and I was 21 but, I took some insulin, got that down, and went for a surf, came back and I was about 10, and sorted that out, and - and it - it's just all depending how much you've got to take and what you want. If you want to over eat, over eat, but if you want to - it's really hard to say because it's - if you - if you don't eat enough you'll just go low, but if you get it right you'll be back in that stage you want to be in - is it 4 is the floor and 8 is the date or something I was told and you'll be alright then but if you over eat it just makes you high and you've got to take more insulin and get it back down - it's just oh And it's like - it's finding the rhythm, really.

Describes his hypos as vicious and explains what he does to control his blood glucose levels.

What do you mean, vicious, nasty? Can you describe them to me?

Oh, like really - I don't want to scare anyone but they just, they, you don't know - you can't really see a lot, especially in the night, if you are prone to hypos in the night so you can't see a lot and you just don't know - you know where you are - you are switch on but you just can't see a lot, and you're really, you're really, really, really, really, really, really hungry. It's like you haven't ate for about I would say a year or something, and you just eat everything and I ate - I did it one night, and I had about four apples, two pears, two peaches, five biscuits, a bottle of lucozade, a hypo thing and a chocolate biscuit, and I went - I went up and then suddenly I felt sick, I was all bloated. I thought, 'No wonder, I ate too much,' and the next morning - I had a rocky night I couldn't - I was feeling sick and everything so I went to sleep. I woke up the next morning. I was about 22, I had ketones and everything. I was feeling rough, so eventually I took 22 units of insulin, to get it back down, a banana, went for a walk, then came back. The ketones had gone and then I went out for a day to St Ives, and came back and we got that sorted. But they're just - they're really vicious and nasty. They grab you like anything but you've just got to deal with them and prove everybody wrong that you're hard and you earn people's respect, and just don't give up on it, because it must be there to give you some help or something.

How does it make you feel when you have been working so hard to try and keep you sugar levels to a good level, I mean when you go high, or low?

Well it's really hard to get it normal, to be quite honest with you. It is pretty solid, but you've just got to keep trying, even if you are at death's door, or want to die, because when you are a teenager or ever since I have been a teenager it's been horrible, and... 

Explain to me and to other teenagers?

Well, it's, you just - hormones and, you just feel, because you're growing and your body parts are different, churning your stomach up with hypos, making you shaky, and - and the high sugars, and whatever you're prone to. If you're prone to being high - sugar, or how much insulin you're taking, like if you do sport and the next day you do nothing and you do sport and you don't know what insulin to take - really hard to regulate, but you've just got to keep going on and on and on.

Are your hypos different now to how they were before, say two years ago?

Two years ago I didn't really get - this year and last year was probably - you get - because hypos just get you at a point where you don't want - when you - when you're miserable, or like just depressed, or you've had a hard day, they'll get you then. They'll get you when you're on the weakest side. They're like little things that bite into you. They'll get you on your weak side, so you've got to really deal with them' that makes it weaker, when you're like on you - if you have been doing like exercising, had a bad day or something, they will get you then. They will get you then because I don't know what it's but they just make you more prone to having hypos when you're stressed or depressed or anything like that. 

And you just - they - there'll be different symptoms - they'll be bad, medium, really bad, vicious, make you - because I've had hypos in the night where I've been really badly shaking. Just can't stop shaking and I don't know if that's a fit or something, but - because once you're over the hypo -it's still in there and it's got to get through there, it's got to g

His blood glucose levels used to be very high and this affected his mood. Once he became violent...

You also told me that one day you felt frustrated and you started sort of punching a piece of wood or something like that?

I came back from the beach and I was about 32, and everyone started having a go at me and they were all going crazy, and I just ran upstairs, and I don't know - it was a little bit of wood, and I just started smashing everything and just went absolutely crazy, and no self control. And I was high as - I don't know - I was about 32 and they had to call the cops, and the copper came round, and I finally calmed down at that bit and he said, 'Have you been on drugs?' and I said, 'No, do I look like I was on drugs', I just couldn't be doing with the coppers, because I can't stand cops - and I couldn't be doing with a copper like telling me what to do, but I didn't want to say nothing. I couldn't be bothered to be banged up for a night, or nothing, so next - I finally got my sugar levels down. I took some insulin and had something to eat and finally calmed me down. But the next morning I was just - oh what the hell happened last night? I was like, I was like on a different planet. People would have thought I'd been on heroin or something. But your blood sugar peaks, they don't say your blood sugars change your mood, but they do if you want them to, I would say.

And so I kind of started - started sorting off getting my sugars back to normal and everything and doing more work at school and getting into things and just slowly getting back together and working for a good sugar level test and everything. Because that was my main priority - to get a good HbA1C. And I kind of got it in the range. I got it better than it was. I got to 8.6 and then I carried on getting it better and better I got an 8.2 and then it - I kind of forgot about it. But I wasn't going really high. I was taking my insulin and everything and but it's really hard to control I had another bad one, which was the worse one I've ever had - it was 9.5, but that month I wasn't really being stupid, or nothing. I was taking the right insulin in the right doses.

And how does it make you feel when you were doing everything right and you get a result that you didn't expect?

I - nah - didn't want to - I thought no I'm not making it miserable, I'm not going to be miserable because that's what it wants you to do. I didn't want to give in, I just thought, no, carry on. It must have been - you just got to keep working on it and it's your age - you've got to get - it's just your age which is the problem, really - your hormones and all that and sorting you out and I thought well it's not really - you've got to do the best you can do. Just keep going, don't give up. If you give up there's just no point.

So, this is the attitude you have, that you understand it's a sort of phase you're going through?

Yeah.

As a hard phase anyway?

Yeah.

Because you are a teenager?

Yeah. That's what I think. Since I've been a teenager I've never had these problems when I was a kid. It was quite mellow when I was a kid, and it was all right really. It's just these past two years that have been pretty'

Rough?

Yeah. But I thought through it all you've just got to keep going on. 

He was finding it difficult to control his diabetes and all he wanted to do was to go surfing.

After I turned fourteen I started to have a lot of hypos, started - because I changed onto a different injection - four injections a day, where you have your insulin for your meals [noise] and then you have you long acting for bed to cover you and that was quite hard to get used to because it was - didn't know what to think about that and I was having, like, highs, lows, and it was just really hard to work and bad HbAC1s, haemoglobins and all that, and it's still bad now, but I'm just trying to sort out, because it's really hard, and...

So I was surfing and everything and when you do sport it was just getting pain all summer. I was like surfing and I thought, oh I'm not having surfing and like being, like, really low and having when your muscles relax and you like have loads of hypos and it's too much to deal with, so I thought, oh I'll start rebelling and being high all summer, and just making the family really miserable and horrible, and everyone was getting quite fed up with this grotty teenager that was trying to ruin their lives and just wouldn't take any insulin and just thought oh I'm going to surf and, not worry, just won't have any hypos or nothing. And so, I decided to do that and when I went back to school I - doing it more and more until one night I came back and I was just a complete mess and came back and my sugar levels were about 32 and I was on the rocks and I wouldn't eat or nothing and everyone was having a go at me, so I decided to pick up a piece of wood and just start smashing everything, and so everyone was having a go at me. I just didn't want to know and so we had to have the coppers round, to sort me out, and I weren't really happy and - I kind of still went on, and then I had to go to the hospital to the clinic and they all started talking to me, and they go oh your HSBC1's 9.3 and at that time that was the worst one we've ever had, so' And then I got more irate so I was - I was just really fed up again, and it was getting more and more harder and harder, and highs and just - and when your HbAC1 gets bad it's just like really irritating, because they want you to have it in one range. Anyway it's mostly to be seven and it - it's still solid now to get it there, and really hard to keep your sugar levels normal, because if you have your good HbAC1 - keep the red cells working, stops you from going blind. So, not only was I making my family miserable, I was making my body parts - ruining my body parts and everything,

But I want to be normal, so - but if you're scared of having hypos, do not, do not be high all the time because in the long run you will be screwed. Your eyesight will be gone, or you'll be on a dialysis machine. You'll be in the middle of nowhere, thinking what's happened to me.

The rebelling period. Tell me what were you thinking at that time, or how frustrated you were'?

I just wanted to be cool at that time.

Cool?

Yeah, I wanted to be a surfer. I wanted to be a pro-surfer, do it all and I don't need - I was like - do it all 'cause I - I didn't want the hypos and that. I just wanted to surf all the time, and it's like a passion and if you're in a passion with anything you want to do that more than you want to do another thing. That was just the main thing. I wanted to just surf and have no problems, and I thought I'll just keep myself high. And I was about - I don't know twenty, it's really, I'm really amazed now I did that actually. I can't believe I kept myself that high. I was just on a different kind of planet and it was real, real high and I was just surfing all the time and being high and everything, and then I had a bad HSBC1 again and I was sick and - at that - for the second time, and ill agai

There is Type 1 diabetes on his father side of the family and he thinks his parents feel guilty...

How do you think your diabetes has affected your parents? In which way do you think? Are they more worried about you?

I've caused them anger - a lot of anger just - they want to grab hold of me and just say look get your sugar levels together. You're going to be blind and I'm not waiting there for, to be on that kidney dialysis machine with you and just sort yourself out and everything. And some will hide it and don't want to show their emotions and, they'll get like peed off and say look it's your family that gave it to him, and they'll keep it all quiet and they just thought - don't show their emotions, either.

About how you feel?

No, because I just get on with it. It's - they know I fight and just lead a normal life as possible, and they kind of just - because they feel more guilty than you do - that's the problem, and you don't want to give them a hard time, because they'll feel more - they'll get more hurt than you will. Because they'll think, oh we've given it to him and he has to go though all this and we haven't got a clue and they'll just feel more guilty so you try not to upset them or nothing, and they'll respect you for just getting on with it, and dealing with it.

So there is a history of diabetes in your family?

Yeah, on my father's side.

He's kind of like really cold about it. He works away a lot, so he's never here. He doesn't really know the thing about it and just not around it enough to know what's happening all the time, so when he comes back and you're having problems, he doesn't know really what to do, so'

It's probably more harder on him than most because he's got to keep it quiet and everything, and can't say anything because he might think we'll have a go back or nothing so he's probably got it quite hard as well. Yeah, everybody's got it hard. You've just got to keep fighting. But the main person is you, that you've got to keep yourself healthy and sort it out, and live a happy life.