Interview 23

Age at interview: 22

Age at diagnosis: 9

Brief Outline: When diagnosed thirteen years ago one of the insulins she was put on was Monotard. She remembers it was cloudy and she had to mix it with short-acting insulin using a syringe plus it stung every time she injected. At the age of ten she found the procedure too complicated and started to use pens. Also early on she was put on four injections a day but the insulin has changed over the years as different things have been more fashionable or they have worked better for her. Currently she is on Lantus and Humalog. As a teenager, what she really disliked about diabetes control was to do the 'finger pricking' and she "rebelled" by not doing her blood sugar tests.

Background: She studied engineering at university and works as an accountant; shares a house with two friends from university. She is a rugby player & currently trains three days a week after work. It used to be 6 days a week when she was at university.

She praises the nurses but found that doctors talked to her parents rather than her and felt that their initial explanations weren't detailed enough.

I don't really remember that much to begin with because yeah I was just in bed and not feeling great. But I was seriously upset I think and yeah initially I was like, oh that's X thousand injections a year or per decade and how many in a lifetime and sort of worked it out like that. But the nurses in hospital were great. They were always really like, well you know you can do this, that and the other and it's all like, don't quit doing anything. It's your life. The doctors were less good. They more talked to my parents than to me and as a nine-year-old that used to drive me up the wall because you, you're old enough to know that you want to know what they're talking about. 

But then after ten days they let me out of hospital. You had to have injected yourself twice and your parents had to inject, have injected you twice first so that took ten days which I think is quite a long time but eventually I got out. And then I was back in and out of hospital and then weekly and so on. But I, yeah I didn't really have much to do with my doctor. I mean I'd see him but it was the nurse, my diabetes nurse who was really helpful and who was great and who would come around to the house and you know if you phoned and said I don't understand something she'd explain it to you. And so it was her that really was the one that helped. 

I think the explanation initially was kind of not scientific enough. I mean I've been interested in science all my life so I was wanting to know how it worked and. They talked about a train that was insulin and the sugar on the carriages being what the insulin, or being the sugar in your blood and then you needed the fuel which was, no the fuel would have been the insulin so it let you absorb the sugar kind of thing which just didn't help me in the slightest. But you know they had all these videos and posters and stuff so they really tried [pause]. But then I think once you get to know your nurse and you kind of build up a relationship she could see what it was that I wanted to know and then she was really good. And I stayed at the same hospital for two years until I was eleven and then we moved to [city] and then I changed.
 

She feels it's important to let young people know they will get good care and advice even if they sometimes do something wrong.

I think partly talking to other people. I mean in order to have information you have to want to have the information so there's no point in forcing information but making it available. Being non-judgemental because as a teenager you can, you know you fear the fact that you're smoking or whatever it is means that the adults are going to be 'Ah no, that's wrong'. Well yes, it's wrong, but being aware that you can still get really good care and advice I think is really important. And I think just other young people makes a massive difference, knowing that other people have problems because often it's really easy to assume that everyone else is perfect. Because the only people you hear about are the ones that have gone and climbed Mt Everest or the ones that have ended up in a coma on their 18th birthday in hospital or something. So, you know, the other 99% of people who, yeah, have problems but also get through life quite happily. I think those are the people it's really important to hear about.
 

She valued getting practical information from specialist nurses and dieticians and also read articles about diabetes in science journals.

Lets talk about information and information sources. Where have you got most of your information about diabetes from?

Complete range. I've, when I was studying at university I had access to a kind of scientific journals and things like that. So purely for interest really rather than how should I live my life, I've read things like that as I've got older and wanted to know more, kind of the science behind it. I read 'Balance' each month which I find can be helpful. I mean the thing about diabetes is it's so personal. You know different people respond to different things. You often get told, oh in colder weather you'll go low but actually sometimes in colder weather I go high because I'm wearing lots of clothes and I'm not doing anything because it's cold. You know I won't be outside so much. So things like that can be really helpful. 

Diabetes nurses, actually I have been really fortunate. My dieticians have been great. I've had two, oh no one excellent dietician, two excellent dieticians who've been just the people that would tell me things. And like one of them was telling me things while I was still not listening to her and sort of three years later started following them. And you know, it, it just made sense and just always, always willing to answer whatever question and not pretend it was all ok. 
 

She found that as she grew up her insulin regimen was too inflexible and unpractical.

Do you remember the insulin regime you were on?

Yeah it was it was syringes which was a complete pain in the neck. As soon as I stopped syringes it all got a lot better. 

And I used to be on two injections a day and so you had to mix the short-acting and the long-acting insulin. So drawing up the syringes used to take, well probably not long but it seemed like quite a long time. And you had to sort of make sure the air bubble was out and make sure that there was enough insulin in the cartridge before you started drawing anything. So yeah my parents did that for a while and then I started doing that but pretty much as soon as I started injecting myself I decided that this was far too complicated. And so I started using pens which made my life a lot easier.

So you changed to pen and which type of insulin with the pen?

ActRapid and Monotard I think. Would that be right? Yeah

Initially?

No. First of all I went on to a 30/70 mix Humilin I think it was called.

Ok. 

Because that, from a pen. But then that wasn't working out right because the 30/70 mix just didn't suit me. So then I went onto having ActRapid three times a day and then Insulatard at night from the age of maybe eleven or twelve. Yeah for the first two or three years we tried out lots of different ways of doing it but it never worked. 

Tell me a little bit more about when you had problems with the insulin, the 30/70?

Ok. Well the thing about 30/70 was that kind of if you have X units at breakfast you're still going to have X units in your system at lunch so it didn't take into account like some days if it was raining then I wouldn't be playing sport. I wouldn't be running around at playtime but obviously when you inject yourself at breakfast you don't know that necessarily that it's going to rain at 11'30 in the morning so you had no control over the long-term insulin that you injected in. So I'd have problems if suddenly my routine changed. And initially that was less of a problem because I was at primary school where it was very much, you know, playtime is 10'00 and then 11'00 and things are sorted. But as I got older and had a slightly less regulated life it became more of a problem.

And then the same in the evening and the problem with the 30/70 insulin was that you had to have snacks. Which is fine at break or something because everyone has snacks but like, I'd eat dinner and I don't tend to be hungry after dinner before I go to bed so you end up eating food that you don't really want and you don't really need. And it was just really complicated because you always had to have things available. And I think also you could. There was no flexibility because if you, if you increased the insulin overall you'd increase both the long-term and the short-term so when I started we used the exchange rate. So every ten grams of carbohydrate I guess was calculated for the amount of insulin I'd have but you know sometimes you might have more and then you couldn't just stick up the short-term insulin because that would also stick up the long-term insulin. So it just got too complicated. I'd be high or low and I'd kind of. As I was injecting myself before dinner or breakfast or if my parents were they'd know almost that I was going to go high but they couldn't do much about it because I would have had to have eaten more at breakfast if I wanted to eat more at lunch again, sort of thing.

So you found the whole regime inflex

She explains why rugby is not an easy sport to play when you have diabetes. But she is proud of doing what she wants to do.

And what about doing your blood sugar tests? How often do you do them?

Now I do them quite a lot. I play rugby and it's quite, obviously quite a violent and active sport [laugh] so you use up serious amounts of sugar in very short periods of time. So like then if I've got a match or if I've got training or fitness session I'll do quite a lot of blood tests. I mean if I'm really not feeling well it could be as much as eight in a day or something but not regularly. 

Have you noticed that sport helps?

I find sport doesn't help. I find it very frustrating because sport's great. It's excellent for you. It's all the long-term benefits are great and I feel better, you know, about myself and healthy if I'm doing sport. But it makes diabetes really [laugh] hard to manage for me. And I talked to my doctors about it. Well he said well partly it's the sports that I choose to do. If you do something like say rowing or jogging or something that's much more steady, I mean, you might be exhausted but it's a constant then it's easier. But because my favourite sport's rugby you might have. You go to a training session and you might be doing something quite stationary but you don't know what you're going to be doing so you know, sometimes coaches can tell you but sometimes they can't. And a match, you might get injured and then, you know, you've had enough sugar to play for eighty minutes and suddenly you've only played for ten or something. Things like that just happen and you can't really do much about it. And I think, I mean I've had so many different types of advice about doing sport. 

My consultant says I should take a can of sugary drink. I also play squash and he plays squash. And he says. Oh well he's got Type II diabetes. He takes a can of sugary drink and will sip, you know, maybe a third of it before and then a third of it during and then if he needs it a third of it after. Now if I have sugary drinks I get headaches because it's so sugary that like your body's just like whoow or mine is. And I wouldn't need that much sugar and I wouldn't want to have that much sugar to then go and run around. It seems to negate the concept of being healthy and doing something sporty. 

So I sort of said this to my dietician. He said well yeah, she could see what he meant but you know maybe try having less insulin before you do sport. And because I'm on four injections a day I can do that. So that's what I do now which works best I find. It depends when because like if I've got training from 7 to 9 and I can't eat dinner until afterwards if I don't have so much insulin at lunch I'm then going to be high all afternoon which obviously isn't what you want. By high I don't mean like through the roof but higher than you choose to be. So depends what time of day but often I'll do sport after dinner so have less insulin with dinner which works really well because you don't have to have loads of sweet. You know, I'll probably still have a chewy bar, not chewy, a sweet before the sport just to make sure I've got enough sugar but I don't need to have loads of stuff around which is good. 

But then my consultant also recommends sports that aren't quite so crazy but everyone, but everyone, but everyone completely supports the fact that I want to play what I want to play. And enjoy life so yeah.

So you are doing what you want but you have to work harder?

Yeah I mean that's how diabetes is for everything. You know you, there's very few things that you couldn't do because of diabetes but you just have to plan more and think more about what you're doing. but I absolutely, cate

She 'rebelled by eating what she shouldn't and putting on loads of weight until a doctor at her GP practice talked to her straight and told her she was risking her future health.

I think my hospital very much went out of it's way to try not to stop you going to hospital because you know you are a teenager and at least if you're there then they get a chance to check up on you every six months where if they have a go at you they don't. Although when I was just started lower sixth, so no I was seventeen. I'm not quite sure when it was I went to the doctor and my normal doctor wasn't there it was someone else who was like, 'Look you're being an idiot. You're gaining loads of weight. You're going to damage yourself. Stop it now or you'll regret it in later life.' Which I wasn't impressed with but actually that was what made me realise that what I was doing was stupid. So I don't know whether the hospital was right or wrong not to have a go at me but that's what they did.

So it was kind of a shock to your system, the fact that you were confronted with this?

Well I mean I talked about it with my parents but I kind of just. I was a teenager, you know. It was how I rebelled. I didn't drink. I didn't smoke. I didn't take drugs but I didn't look after my diabetes. It I guess I'd had years of people saying you've got to do this, you've got to do that, you've got to make sure you have sugar, you've got to do this. And I always did all those things. I never didn't inject myself or didn't have sugar but I also ate whatever I felt like and ignored it as much as possible. And so yeah it was a bit of a shock at the time but like.

Were there arguments or situations'?

A little bit. I mean there were arguments. If they talked to me I'd tend to burst into tears but at the time I was also doing very well at school, running youth clubs, doing, you know like, all my friends were having arguments with their parents about something. A lot of them about staying out late or about this, that and the other. I was kind of doing really well on all the normal things that teenagers grow up on and this was the thing that I picked. So there were no more arguments than there were with any of my friends parents I guess. So it never felt like [sneeze], like that much of a problem. I mean I would just, ignored it so I refused to talk about it I guess.

I mean I used to get Balance, the Diabetes UK magazine and it would always have, you know, losing limbs and this, that and the other and I used to think this is ridiculous. I choose to live my life positively and I don't want to think about this. I'd rather, you know, not let diabetes win and do whatever I want to do. But I knew, you know, I knew what I was doing was stupid. I think yeah as I was, once I got to sixth form and kind of realised that I just didn't feel very well. And I'd go to the doctor and they'd do all the tests and I was always fine you know, I'd always got circulation and could feel things but every time the tests were done I was always like, [oow ya ooh] what if I fail or whatever. And I think it was when the doctor said, 'Look this is serious' that I realised that actually it wasn't something to think about once every six months when you go to hospital. It was my life, for the rest of my life. And guess it was just because I started being aware that I wasn't going to stay a teenager forever and that, you know, I did want to be healthy for, for as much of the rest of my life as I could be.
 

She got good advice from her dietician before she went to uni but still found fresher’s week difficult because so many people were out to drink a lot.

Tell me about you going to university because I think that's quite an important aspect for a young person with diabetes, in terms of sort of not having your parents there. Not having such a structured life?

Yeah 

How do you cope?

Well initially I was quite worried. Just little things like the only time I've ever gone into a diabetic coma has been first thing in the morning. Normally if I go low during the night I'll wake up but there have been four times in my life when I haven't and I'm aware that this is a problem. So I've always, my parents will always check that I'm awake in the morning and if they've gone out before I wake up they'll just phone me. And it's just not an issue, you know. They'll phone, say 'Hi are you up' and I'll say 'Yes' and that's it. There's just, I don't think about it. So going to university was suddenly more stressful because little things like that you don't have. 

And I found the drinking culture quite stressful because I just don't. I can't drink. If I drink my sugars go haywire. You know I can have a drink. I can't get drunk and obviously there's a lot of getting drunk at university. So from that aspect it was quite stressful. But, you know, by that point I'd been out with friends who had been drinking when I wouldn't drink so much and luckily I guess, I'd learnt what, how much I could drink and how much I couldn't drink before I went to university. So it wasn't like you'll get there and suddenly there's this whole new world which was really good. So you'

How did you learn before?

Well I talked to my dietician quite a lot. She was really good. I had a really nice dietician who was, perfectly willing to talk about things like drink or drugs or whatever it was that you wanted to ask which was really helpful because it meant that I could actually have proper advice rather than trial and error. So she sort of, you know, said well obviously avoid like the sort of Smirnoff Ice or bottled drinks that are lemonade basically. Anything that I wouldn't normally drink like lemonade or coke or orange juice or something I don't drink just because it's with alcohol because, you know, that was self-evident. And then I'd kind of tried different things really. I mean I used to drink with my parents, not drink with them but, you know, we'd have a glass of wine at dinner so I knew that having a glass of wine with dinner was fine. 

I mean I tried out something like. There was definitely. I used to drink Archers and diet lemonade and have learnt that Archers is not good, mainly because it's syrup. So you know, you drink it. You go high and then you figure it out but just building up. You know, I tended to stick to spirits and diet whatever is there because I know that's fine. And once you've got a drink that you like and you know you have it, it's fine. And again at university once I had a group of friends it meant that I could relax and I could drink. Not, I mean I really don't get drunk because it, I don't feel well when I'm [laugh] drunk irrespective of being diabetic but it meant that, you know, if I had a drink I didn't have to worry because I knew that they'd know. But initially it was quite hard because people don't know and there's always the risk that you go low and you look like you're drunk and no ones going to, going to understand. So you, yeah it, it. Freshers' week was pretty hard because I just didn't want to get myself into a situation where that.
 

Going to university and away from home worried her because of her episodes of diabetes coma in the past.

Tell me about you going to university because I think that's, that's quite an important aspect for a young person with diabetes, in terms of sort of not having your parents there. Not having such a structured life?

Yeah 

How do you cope?

Well initially I was quite worried. Just little things like the only time I've ever gone into a diabetic coma has been first thing in the morning. Normally if I go low during the night I'll wake up but there have been four times in my life when I haven't and I'm aware that this is a problem. So I've always, my parents will always check that I'm awake in the morning and if they've gone out before I wake up they'll just phone me. And it's just not an issue, you know. They'll phone, say 'Hi are you up' and I'll say 'Yes' and that's it. There's just, I don't think about it. So going to university was suddenly more stressful because little things like that you don't have. 

I did make sure that people were aware that if I wasn't in lectures or if I wasn't where I was supposed to be that it wasn't that I'd slept in it was that there could be a problem. which was a bit of an issue at university initially because you don't know people and going up to someone on the first day saying, 'Hi you know if I'm not here tomorrow will you please check on me'. So my parents were great. They phoned me for the first couple of days, probably like three or four days just initially. But very quickly you just get to know people and you know the people on your staircase and they're aware of it. 

And my college was really good because I'd said, 'Look I need access to a fridge to put my insulin in. And they said, 'Well there are some rooms with fridges and they'd try and put me in one'. I got there and there wasn't a fridge. And there's one kitchen in the whole of my college which serves maybe 150 people and the fridge was always disgusting, in mould and just student fridge basically. And I said to them, 'Look I can't keep it in there. It, it'll get water on it. It will be disgusting'. And they bought me a fridge straight off and then every year that I moved room that I was in college accommodation they just moved the fridge for me which was great but I was really lucky. I know that doesn't happen everywhere.