Interview 19

Age at interview: 26

Age at diagnosis: 18

Brief Outline:

Because he was so close to taking exams they put him on a fixed dosage of insulin twice a day. He stopped feeling tired and was able to sit his exams. Afterwards, his diabetes team started working with him towards achieving well-controled diabetes. Currently he is on long-acting insulin, Lantus and fast-acting Humalog that he injects when he eats. There was a period in which his HbA1C's were as low as 5 mml/l and he was experiencing frequent hypos. His doctor adviced him to relax his tight control. Says that his diabetes is very well-controlled and his HbA1C's are usually between 6 to 7 mml/l.

Background:

Graduate student; lives in a shared house. He was diagnosed a couple of weeks before taking his A level exams and says that the diabetes care team were very supportive.

After he was started on insulin it was such a relief to stopped feeling poorly that he didn't...

I was diagnosed at the age of 18, and it was just a couple of weeks before my A Levels started, so it was a bit of a shock at the time. It wasn't the best timing for it really. What happened was I was feeling really quite tired at school and getting thirsty a lot. And one day I got up in the morning and my mum decided I looked absolutely awful, and instead of sending me off to school she dragged me to the doctor's instead.

When you say that you were feeling awful, can you tell me more about it?

Yes, it was, it was mainly just, before I was diagnosed it was just an incredible degree of tiredness really. I'd kind of go to school and just kind of collapse and just try and stay awake through the lesson, if you see what I mean. I just felt like I had no energy at all. So, yes, that was probably the most obvious and, obvious symptom I had and the most kind of troublesome one. Although the other things that everyone else seemed to notice were things like I lost a, quite a lot of weight. I think I lost about a stone, and at the time I was only 8' stone to begin with, so losing a stone from that made me look kind of pretty skinny. But I didn't really notice that myself. But everyone around me was always kind of saying, you know, 'Are you okay?' And I'd kind of say, 'Yes, I am'. But it turns out I wasn't.

I used to always kind of pass out at the sight of needles and all this kind of thing, but I didn't find injecting myself to be any kind of a problem at all. Partly because it was such a relief to stop feeling so awful all the time, and partly because when you're doing it yourself it's like you're in control more. It's not someone else kind of approaching you with a needle and kind of sticking you with it. You, you've got control of it yourself.

Before diagnosis he was having problems with his vision but didn't know it was because of...

How often do you have an HbA1c test?

It's every time I go to the consultant. So it's every four to six months, or something like that.

What else happens when you go to, to see your consultant?

They, well, they check my weight and that kind of thing, and blood pressure. And quite often they'll check my eyes as well, and check if I've got, check I've still got feeling in my feet and that kind of thing. And all of those have been fine so far, touch wood and all that.

You just told me you had, you said before diagnosis you had some eyesight problems?

Yes, it's apparently the, if you get too much sugar in your eyeball it can kind of affect your vision. So you might find that you need stronger glasses or something like that and your eyesight can go a bit funny as a result of that, of that. Because apparently according to my optician at the time it's quite common. But it was one of those things that I didn't know was related to diabetes at the time, so I kind of didn't put two and two together and all that kind of thing.

And have you had your eyes photographed?

I don't know if they've been photographed, but the, the consultant does kind of do the thing where, you know, they dilate the pupils and check the back of your eyes and all that kind of thing. So he does that kind of fairly regularly.

Who do you see when you go? How many people?

At the moment I normally just see the various nurses that are kind of doing the tests to start with, before I see a consultant. Then just a consultant afterwards. But before, I remember when I started off I must have seen dieticians and specialist nurses and all that kind of thing pretty much every time I went. So there was kind of three or four people I'd see at a time. But now it's just pretty much down to the people doing the blood tests and stuff, and then the consultant. And then if he thinks there's anyone else I should see, I go and see them, kind of passes me on. But that's not really been necessary in recent months.

His consultant suggested that he tried another insulin regimen because he was having lots of...

And do you remember the first insulin you were put on, the name of it?

The very first one I think was Insulatard. But I've kind of changed over the years as kind of the newer insulins have come out. I've gone on to those as they've appeared, and they've made quite a big difference. So I moved on to Humalog, that was probably about six or seven years ago maybe, and then going on to that most recent long-term insulin, which I can't remember the name of off the top of my head. I just know it by the colour of the packet. So'

Lantus?

Yes, that's the one.

Are you on Lantus now?

Yes. And that, at the time I changed I was having lots of problems with hypos in the morning. And I changed on to that and it kind of sorted everything out and made it, everything level again. So it's one of those things that kind of gradually changed. Before I'd had kind of perfectly reasonable control, and then for no particularly good reason it seemed that I started to get hypos in the morning. But changing the insulin sorted that out. So it was, kind of came along at the right time for me I think.

Who suggested you try Lantus?

It was my consultant.

You were on Humalog?

It's a combination of Lantus and Humalog at the moment I'm on.

And before it was?

Before it was, I started off on just Insulatard, and then I changed to Insulatard and Humalog on top of that. And then I changed the Insulatard for the Lantus later on.

How many times a day are you taking insulin?

Well, I take the Lantus, I take the Lantus once a day. And the Humalog, it depends how many meals I have basically. I seem to skip breakfast fairly often, far more often than I should I suppose. But if I do that then I might well miss the dose of Humalog that goes along with that. But normally I'd expect to have another three or four injections of Humalog on top of the one of Lantus each day. So it's four or five in all.

Do you take the Lantus in the morning or in the evening?

I take it just before I go to bed.

So the episodes of hypos are less frequent now?

Yes, the ones that used to happen in the morning have disappeared, and things are kind of much more steady throughout the day.

For how long have you been on the new regime?

I think its about a year, something like that, maybe two.

He kept his blood glucose level lower and was experiencing frequent hypos. His diabetes doctor...

Do you tend to experience hypo kind of often, or sometimes?

Yes, it, it's, there have been times when I've had kind of almost too tight control over my blood sugar levels where they were quite common. But I've kind of got things into more of a balance now, so they don't happen as, quite as often as they used to. But there are certainly things that cause them to happen. Like I can almost guarantee that if I do something like do lots of heavy lifting, if I'm moving house and have to kind of move everything out of a room and into another one or something like that, all that work will kind of pretty much invariably cause my blood sugars to drop. But for the most part they're not all that common for me I suppose. They're not, I've never had a very severe one or anything. They've always, I've always had quite good warning signs that they're coming on, so they've not been too much of a problem.

Can you tell me, because you said that you have sort of kind of two patterns of managing your diabetes, you say that you have it under tight control, and sort of kind of more relaxed, can you tell me about both?

Yes. When I started there was, I mean obviously my blood sugars when I was first diagnosed were very high, and then I kind of got them down. And that kind of honeymoon period got me used to kind of expecting to have kind of 5s and 6s all the time and that kind of thing. And as that kind of started to wear out I was kind of trying to aim for the same kind of numbers without really being able to manage it. So I was getting a lot more hypos as a result. And my doctors sort of said, you know, 'You're doing perfectly well. You don't need to kind of maintain such a, such low numbers all the time. You can kind of let things go a little bit higher and have fewer hypos. And it's your life, you can kind of... Once I'd just allowed them to go up to kind of 6s and 7s without kind of stressing about them in any way the number of hypos dropped off lots. So there was a kind of a period where I was kind of controlling it too tightly just because I'd been used to my body being able to do that anyway. And when that stopped working I was kind of trying to do the same thing, which wasn't really a good idea. And then apart from that it's just kind of when I know that I really can't afford to have a hypo, or I know that I'm going to be doing a lot of exercise which might make them more likely, then sometimes I'll adjust things to kind of avoid that situation. But that's kind of just on a kind of a single-day basis or something.

He tried to maintain his HbA1C's between 5 and 6 per cent and was experiencing lot of hypos....

When I started there was, I mean obviously my blood sugars when I was first diagnosed were very high, and then I kind of got them down. And that kind of honeymoon period got me used to kind of expecting to have kind of 5s and 6s all the time and, and that kind of thing. And as that kind of started to wear out I was kind of trying to aim for the same kind of numbers without really being able to manage it. So I was getting a lot more hypos as a result. And my doctors sort of said, you know, 'You're doing perfectly well. You don't need to kind of maintain such a, such low numbers all the time. You can kind of let things go a little bit higher and have fewer hypos. And it's your life, you can kind of''. Once I'd just allowed them to go up to kind of 6s and 7s without kind of stressing about them in any way the number of hypos dropped off lots. So there was a kind of a period where I was kind of controlling it too tightly just because I'd been used to my body being able to do that anyway. And when that stopped working I was kind of trying to do the same thing, which wasn't really a good idea. And then apart from that it's just kind of when I know that I really can't afford to have a hypo, or I know that I'm going to be doing a lot of exercise which might make them more likely, then sometimes I'll adjust things to kind of avoid that situation. But that's kind of just on a kind of a single-day basis or something. 

On average what are your readings when you have an HbA1c?

For the most part over the years I've had it they've normally been kind of around between 6 and 7 per cent. I've, have had times when they've been kind of down as low as 5, which is kind of the time when my doctors were saying, 'Look, you know, it's perhaps a little too low'. And there's been one or two more recently that have been kind of at the higher end. So I've been trying to beat them back down again. But they've not been kind of really much more than 7 for the most part.

He explains at what point he tells new girlfriends about his diabetes.

So with girlfriends, yes, I don't tell them, I don't necessarily tell them on the first date, but I treat it like I would any other friend, that I tell them when it crops up. And it's not a big deal really. I mean I think there's enough people with diabetes around that most people kind of have some idea about it. And if they already kind of know to some extent beforehand, then when you do tell them they kind of realise that it's not a major concern as far as they're concerned really. So, yes, I don't think that's ever been a cause for any problems in a relationship. So, yes.

In general, I mean either with friends or girlfriends, how do they react, how much do they know about diabetes?

They probably don't know a great deal other than they kind of assume that you can't eat anything sugary which I sometimes cheat a bit on anyway. I think everyone does probably. So they're sometimes surprised when I do cheat, which I try and keep to a minimum. And they kind of know that you have to inject and that kind of thing, which they, like pretty much a lot of people do, they probably assume that it's incredibly painful every single time and that kind of thing. So they probably kind of realise fairly quickly that it's, that I don't think it's a tremendously big deal and they probably shouldn't either. So, yes, it's never, I don't think it's come up as a problem with anyone, but probably because I've tended to know people for a while before they realise I suppose. So they kind of, by that point they realise that I'm still, you know, the same person.

When it comes to injecting in front of your friends or girlfriends?

I, well, with girlfriends, by the time you get to know them well enough then it's not really a big deal. But I try and, with friends I kind of never know when people are going to be incredibly squeamish about that kind of thing. So if I do kind of inject in front of them I'll try and do it in a not very obvious way, or kind of slip off round the corner somewhere quickly and get that sorted out without them, without kind of waving sharp, pointy objects in front of them and that kind of thing. But, yes, I think they probably, I mean they know that that's what I'm doing and that kind of thing. So it's not really a particularly big issue. But I try and, try and be discreet about it, but not let it kind of stop me from doing it.

And in your experience would you say that with your girlfriends, I mean sort of the first step perhaps is for them to know you, rather than sort of to know that you have diabetes?

Yes, yes. yes, I mean obviously if you go out for dinner with them then it depends how, how well you manage to be discreet about whether they notice. But if you're noticed then I don't think of it as a particularly big deal. And, yes, it's never a kind of big topic of conversation or anything. So, yes, I normally get the chance to kind of know them fairly well before it comes up. And to be honest, even if it did come up kind of straight away, I don't think that, if they did make a big thing about it they're probably not right for a girlfriend anyway, are they?

He's learnt from bitter experience that he has to watch how much he eats before he goes out and...

And do you drink alcohol?

Yes, probably more than I should. It's a, it's not really, it's not been a particularly big problem. I mean obviously a student at university, everyone drinks kind of a fair bit from time to time, but as long as you don't go and make a complete mess of yourself it's not normally been too much of a problem. So kind of drink and have fun, but don't go and wake up in the gutter somewhere. That's pretty much the same advice you'd give to anyone, but you have to kind of be a bit more strict with yourself about following it really.

Which kind of safety guidelines do you follow? Do you eat before you, if you know that you're going to drink, do you eat beforehand?

Yes, definitely. There was one time when I started drinking without eating and it played all kinds of havoc. It was quite interesting the way that different drinks affect my blood sugar as well. So if I drink wine it will tend to take them down. But if I drank say something with some kind of a sugary mix in it would go up instead. And this one particular time I drank the best part of a bottle of wine without having anything to eat and ended up just for the rest of the evening with blood sugars going all over the place. So since then I've avoided doing that. So it's one of those things that you kind of learn by experience, but probably you don't want to have too much of an experience xx that kind of thing.

So what happened? Your sugar levels went down?

Yes. And I ended up eating a huge amount. Because one of the, yes, one of the things that happens when they seem to drop down quite a lot is you get incredibly hungry. So then I ate a huge amount and then they went straight back up again, and then they went down again. And it was kind of all over the place for most of the evening. But, yes, which kind of, I ended up having to keep disappearing to find something to eat and this kind of thing. It made a bit of a mess of the evening. So, yes, not really the best, cleverest thing I've ever done.