Interview 35

Age at interview: 17

Age at diagnosis: 2

Brief Outline: After diagnosis she was on two injections a day of Humalog Mix 25. As a child she used to have lots of hypos and twice she was admitted to hospital. When she was about 14 years old her insulin regimen was changed to four injections a day' a long-lasting injection in the evening (Levemir) and an injection of fast-acting insulin three times a day at mealtimes (NovoRapid). She kept forgetting to take her lunch time insulin and was having high blood sugar levels. She went back to Humalog Mix 25 until she decided to try again the four injections a day regimen. This insulin regimen has worked very well the second time and she thinks it is because she is able to carry her insulin pen with her rather than leaving it in the school office. She has improved her diet by including slow-release carbohydrate (GI food) and more vegetables and fruits.

Background: Sixth-form student preparing for her final exams. Plans to go to university this year. Lives with her parents & younger sister. Her mother was diagnosed at 14 with type 1 diabetes. Now she has very good control but it took her a while to get there.

She asked her diabetes care team about diabetes management at university.

And now regarding, because you're going to university, what were your main questions?

It was just generally like, 'What do I do about getting my insulin from a new pharmacy? Getting a new doctor, should I get one or should I just stay with my GP at home and travel back when I need to visit the hospital, whatever?' Things like that. But they seemed to answer my questions very well.

What did they say?

They said that I should just arrange my diabetic clinic appointments for when I've got holidays, rather than transferring to a new hospital, unless I feel I need to transfer to a new hospital. Put, be put temporarily on the GP's list where I'm going, but stay on the one at home as well for when I'm at home during the holidays. And keep a set of insulin at university and home. Same with blood tests, same with all my medication, keep a spare at home and at university.

Now when you go to, any other questions that you had?

Well, I think that was mainly it, like, 'What do I do?' And it was just things like telling my friends and making sure people are aware of the fact that I've got diabetes, like those in my dorms and stuff.

And what about having easy access to a fridge?

Yes. All the universities know that I have diabetes and they've all contacted me saying, 'We don't usually allow people to have mini fridges in their rooms. But we'll make the exception for you so you can keep your insulin cool'. So they've all been very understanding about that.

Are you going to this university with a friend?

No. So it's going to have to be a subject where I have to like talk to people in my dorm about and people on the course to make sure they're all fully aware of it and they know what to do in an emergency.
 

Explains what a GI diet is and what benefits she has had from it.

And it was more regarding to this GI diet?

Yes. It was just looking a lot at the GI diet and how it works. And I just heard that it would be a really useful thing for people with diabetes to eat low GI foods. So I just went and looked up about it.

Can you explain to us what low GI diet is all about?

It's foods that have more complex carbohydrates, which are carbohydrates that get released more slowly into your system than foods that, say wholegrain foods, foods with oats in. They'll get released into the blood slowly. So you're not going to feel hungry quickly. And it's going to last, the energy is going to last a lot longer than say chocolate or something that will get released into the blood very fastly and will give you more of a high and then a low straight after.

So it's sort of brown rice? 

Yes.

Brown bread?

Wheaty, oaty foods.

Like porridge?

Yes.

When I was, when I was about I think between 14 and 16 I just started putting on some weight. And I wasn't particularly so much overweight, I was just more over the weight that I wanted to be. I was a bit, I wasn't slim, put it that way.

So you were a little bit plump?

Yes, just a bit. And so I just tried to change my diet a little. I didn't, I don't think I actually made that many changes. It doesn't feel like it anyway. But I made enough so that I ended up losing it. And in the end I lost about a stone I think. And now I'm perfectly happy with the way I am. And, well, I'

And this is mostly to a change of diet?

I think so, yes. I don't recall doing any more exercise than I used, than I did. I might have walked the dog an extra time for a week or something. But I didn't start going to the gym every day or anything. So it was just more of a change in diet. I stopped snacking so much, stopped eating loads of crisps and biscuits, and just stuck to regular meals. And I lost it. I'm happy now.

So you would say it was a gradual process?

Yes.

So you didn't do anything-

It wasn't like a dramatic.

you didn't do anything drastic?

No. I just changed the way I ate. And it worked.

Did you talk to anybody at the clinic?

No. It was just a thing I decided to do. And my dad was losing weight at the same time. So we, we all changed our diets really.

It was a family effort?

Yes.

Her mother was diagnosed with Type 1 diabetes when she was a teenager and has been most...

Now you said that you started doing your injections when you were age 6 or 7?

Yes. It's probably between 7 that I, it must have been around then, yes. Because it was definitely in primary school.

Do you remember much about it. I mean who encouraged you to do it?

I assume it was my mum. She's diabetic herself. So obviously she's helped me a lot throughout me having diabetes, and she's understood it. So she probably encouraged me to start trying to do it myself.

She's diabetes type 1?

Yes.

So you have had kind of someone with the experience -

Yes.

- of controlling -

Yes.

- of dealing with diabetes?

It has helped a lot, because she can answer a lot of questions for me about it. So I don't have to keep trudging over, I don't have to keep like ringing up the diabetes nurse whenever I need help or anything.

So you talk to your mum?

Yes.

What helped? 

Just support from friends and family really. That's, that always helps. Just, you know, a hug from a friend and a kind word will just get you through the day.

Were you, are you able to talk to your parents about it, or your mum?

Yes. Very understanding about it obviously, because my mum had it. She had, she was diagnosed when she was about 14. So she knows what it's to, like to be a teenager with diabetes.

Do you think she has been, she has worried about you more than your siblings?

I think she does worry about a lot. I think she, yes, she really does worry. But then she knows what can go wrong. And from her experiences she just knows what's happening. So she does worry a lot, because she's been there all my life, she knows what I'm like, and she knows what happens to me just personally. So I think she does worry a lot, yes. I think she does worry a lot more than anyone else in the family.

And what about when you were growing up and you wanted to, to be independent, Was she, was she a bit worried to let you take control?

I think, yes, she probably was worried. But she didn't hold me back that much. She just generally let me find out things by myself, and just lets me do what I want and find out what affects my diabetes and things like that.

And what about your dad?

Yes, well, obviously he knows, knows loads about diabetes well because my mum's had it since she was about 14. So he's just as supportive as my mum really.

When she was little her mother came into school to test her blood glucose levels. The main...

Now how was being a child and having diabetes and going to school?

Well, I used to, when I was in Reception I used to go home for my lunch, so my mum could check-up on me and make sure I was okay. And then she like, at probably middle, end of Reception she let me like stay in school for lunch. And generally I just had to take snacks into school with me and make sure I had my break, whereas the other kids might have not been able to have snacks at break. Like they made an exception for me. There were a few times when my control wasn't so good that my mum would come into school and blood test me like at break or lunchtime every, for like a week or so, to figure out what was wrong kind of thing. But I don't think really it's affected me terribly apart from the couple of times I've had hypos in school. Which has obviously been disastrous.

What about you vis-'-vis other children? Didn't you, were they asking questions? Were some of them unkind?

I've never had any unkindness about it, no. It wasn't really such an issue in primary school because I was only on two injections a day. So nobody ever saw me doing injections. It was only when I had a low blood sugar. And they all seemed to know what was going on. And they'd go and get a teacher or whatever. So they were all fairly understanding in that respect. Now I'll be on the four a day, doing it in lunchtime, there are a few squeamish people who are like 'Ooh'. And I'm like, 'Okay. I'll go and do it somewhere else'. So that's the only really problem, squeamish people.

She often forgot her lunchtime injections in year nine at school, because she preferred to be...

Do you remember what insulin you were'?

Yes. When I was in primary school up to I'd say Year 9 secondary school I was on two injections a day, before breakfast and before my evening meal. My insulin, I used to be on, when I was younger, a child, I used to be on very low amounts of insulin, that increased as I got older. So when I was in about Year 9 I went on four injections a day. However the first time I went on four injections a day, because I'm on four injections a day again now, but I did go off the four injections a day I think after about a year because it didn't seem to suit me. I think I was, I can't remember exactly but I did end up having some problems with it.

What type of problems?

I think I was, I can't really remember why I went off it, because I'm on again now and it's absolutely fine. I think it was just because I had to keep my midday injection in the office at school. And I had to keep going to the office at lunchtime, every single lunch, and I forgot my lunchtime injection so many times. But, so I went back onto the two a day, when it was easier because it was before breakfast and before dinner. I could do it at home. There was no problems at school. But now I'm in the Sixth Form it's easier to just keep my injection in a bag, and I seem to be able to remember to take it now. And so four injections is a lot better. 

So how old were you when you were in year 9? 13?

13, 14 years old.

So, and at that age you had a problem with remembering your lunchtime injection?

Yes. So then I went back onto the two a day. But I ended up having a very bad hypo when I was on two a day. That, I think it was in the summer some time, during the night, I had a very bad hypo. So we went back onto the four a day and it's been fine this time.

For how long did that period last? They had to change your injections because of that didn't they?

Yes. I went onto the two a day regime again that I had been on before. But then I ended up having again some problems with that one. So I went back onto the four a day at the s-, in the start of Sixth Form. I found this time it worked fine for me. And it's, generally my control is better now than it was.

And you are not forgetting injections?

Not as much as I did anyway. A few times when it's like half an hour after my dinner like, 'Oh, forgot it again'. But it's not like majorly like it was last time of forgetting it every day.

Why do you think you were forgetting so often?

I don't know. It's just, you know, lower down the school there was like, I don't know, I wanted to be with friends at lunchtime, doing stuff. I didn't want to have to be trudging over to the office to get my injection and everything. And so I'd just end up getting into a conversation or going and doing something and not remembering to do it.