Interview 25

Age at interview: 17

Age at diagnosis: 12

Brief Outline: After being diagnosed with diabetes she was put on Humalog Mix 25 twice a day. She had one injection with her breakfast and another at tea time. She used Humalog for about four years but because her control was a bit unstable decided to follow the advice of her diabetes care team and changed to Lantus but remained using Humalog mix. She was also diagnosed with Coeliac disease (gluten intolerance) and she finds that her new four injections a day regimen allows her to control her carbohydrate intake better. Along with Coeliac disease she was found to have slight damage to her kidneys. She is currently taking Enalapril tablets. She has applied for an Insulin Pump and sees it as the next step up from being able to control her diabetes even better. Having tight control is very important to her and she tends to test her blood sugar levels about 10 times a day.

Background: A level student and also works part-time as a life guard at her local swimming pool. She plans to go to university after her exams and would like more information about diabetes and university life.

She wanted to ask 'everyday' questions but worried that they might be seen as unimportant.

In terms of information, what do you think young people with diabetes need to know?

I wanted to know the little things, everyday little things.

Like what?

[Sighs] Just like if you got hot or something, what would happen? And they tell you general things like what to do when you're hypo and stuff. I wanted to know, though, everyday little things like... I don't know... what made your blood do this and that what - long-term effects, I wanted to know, as well. What if I keep pricking my finger, what's it going to do - because obviously it doesn't do anything, but I didn't know that - I thought I'd have like hard calluses on my hands or something. They didn't sort of consider to tell you that, and you felt a bit silly asking, because they just sort of took it for granted.

So there are those little things that are important?

Yeah, day-to-day things. Like they didn't tell me how to alert people about it oh like the way you're meant to store it. I thought you had to carry round a big old box or something, because that was the blood test at the hospital, and that you had to keep with you all the time, well I suppose it's personal choice but they didn't advise you, well keep a bag with you or, just, yeah, loads of things I wanted to know.

She was thirsty all the time and felt run down.

I was diagnosed when I was twelve. That was because I was feeling really run down, and thirsty - I was getting up in the night and drinking, and - at school I was like more noticeable because I was drinking like instead of one bottle a day I was drinking two bottles of mineral water and it was just odd, Mum noticed it. It was on my birthday actually [laughs], and she was like, 'Well I think you've probably got diabetes', because she's a nurse, and then I was like, okay. So we went to the doctors and they did a test, and on that exact day I went - they like sent me to hospital because they obviously found blood not blood, urine had sugar in, and went to hospital, they gave me tests, and within a few hours they sat me down in a room and said, 'Oh you've got it'. I was like okay. I remember just sitting there and thinking - I didn't want to, like, speak or anything, and they were like, 'You can cry you know,' and then - it wasn't a sad thing but - because I had so many people around me, and helping.

A urine test done at the diabetic clinic had traces of protein in it. This led to further investigations where it was found that she had developed kidney problems.

I can't remember, but when I was diagnosed with diabetes, they found - well they thought it was blood, but it was protein, in the urine. They didn't look too much into it, and there's - I don't even know why they suspected it, but then they checked again, and the protein had gone up since the few years ago that I got diagnosed. So they were just like curious, and just did more tests and it developed on from there. So they sort of backtracked, and said why was that there?

So, yeah, they did a urine test? When you went to see them at the clinic?

Mm.

So that prompted them to investigate why there was protein in the urine?

Yeah.

Which other type of test they did?

They did blood tests, for all sorts, I think. They did a general check. They did that the other day as well. They just checked everything and, like, anything you can think of. They just wanted to make sure I'm okay. I mean I suppose the more you test the more things you find wrong, which is bad, but as long as you get them sorted in the end, then it's going to help you later on.

So they did that, and they found the coeliac and at the same time they were - they found you had a kidney problem?

Yeah, and then they gave me an appointment, at [name] Hospital, to go have an endoscopy, or something, when they put the tube down your throat?

And then I had - they took a sample of my kidney, to see what was going on there. So I had both of those at the same time, like in - I had the operation on my kidney, and then - where they took a bit out, and they did the throat thing at the same time.

And what they found out?

Yeah, they found out that I had - my protein creatinin levels that are up? I think it's just my kidney deteriorating. I don't know, not processing stuff properly. I don't really have much knowledge of what's going on with my kidneys. But I just know that taking blood pressure tablets - the Lanopril stops it being so - gets worse - hopefully stops it from getting worse.
 

She isn't ready to leave the children's clinic yet because it suits her life at the moment and provides her with different kinds of support.

Yeah, they're - my diabetes team is generally very good. They've got - they have a dietician there, and specialists in diabetes, and there's a nurse that does all the HbA1Cs and weighing, and she keeps that all up to date, and they do inform you if you ask anything, then they'll like 'what's my weight today' and they will show you little charts and stuff. I'm still at the paediatric one, so, the children's one, because I just feel more comfortable there. I will have to move to an adult one, but not until I want to.

You don't want to go yet?

No. [laughs] Because I'm quite comfortable there, because I know the people, but when I go away next year I probably will have to move, because I'll be in, I won't be in [city] anymore. Yeah, they're quite friendly. A lot of the time, if I don't understand anything, they'll actually get down and draw photos, draw photos - draw pictures - and graphs, and they explain it very well. And if you want anything, they'll try and help for you, and try and get it. Blood tests and stuff, they just have them lying around, so yeah. Their information is very useful, because you get a more general overview of what's happening with everyone and if something's not going well for you they can suggest, like a parallel case, like this girl the other day - she also had this, she was also going low at this time. She did this and I wonder if it'll work for you. So they can apply their knowledge and experience. It's just sort of, I don't know, I suppose it's like getting tips as you go along. Because obviously you learn a lot yourself, and you know everyone's different, and you go there and you get, like, a new sort of way of dealing with different things. And the dietician does help too, although I don't see her as frequently. She was the one who mentioned the counting carbohydrate scheme, and it's just tied in really well.

Yeah, easy language would be good [laughs]. Most - because my clinic's very good, and they do use it, I suppose, my clinic's never patronised me, but if they did I think I'd hate it'

I can't really say much about it, because I've got such a good team.

You have been with them for five years. So when you go to university you will need to go to another?

Yeah, maybe, depends on how far I go. I went to the adult one once and it felt really detached, like - well obviously they didn't know me, but I don't know, I'm not sure if there's a lack of [pause] expertise?

What do you mean detached? Impersonal?

Yeah, they were impersonal. They sort of had a process, it felt like. You do this, this and this when we see you. It wasn't about - because I've just talked to my clinic people it wasn't about just sitting in there and talking away, because that something they want you to do and when you talk away that's when you usually find, oh you're doing this' yeah they had processes like we're going to do this now, we'll talk about breakfast here, breakfast here, and feel if you've got any lumps and bumps' I just didn't like it much.

So you found the consultation more prescriptive?

Yeah, it was very structured. At the paediatrics one they do have structures, I suppose they used to dealing with little children where you have to make it fun, but they, it wasn't so rigid. You can like you can talk about something totally obscure, that's slightly applicable, whereas I felt that I had to talk about, well I do this in the morning, I eat this then, when I was at the adult one, whereas I can relate yeah I went to town, a and were you walking around the town eatin

It was reassuring to have a fixed regimen when first diagnosed.

Humalog? Okay, and you had to take that twice a day?

Yeah. Because I had half long acting and half fast acting. I had - I think I had one with breakfast and one with tea, and that took me through the night.

And how did you adjust to that? Did you have any problems with that, or not?

I - it was a bit odd, obviously, but I had - they'd given me a structured regime, something you must eat, here, here, here. And that was good for me, the fact that they told me what to do because it would be a bit daunting being left to yourself. So, yeah, the structure helped me, because they tell you when to eat, how much carbohydrate, roughly. It's quite advisable to do it with a parent or someone, [laughs] because even now I sometimes, there are some things I don't see that I'm doing wrong. If you get like an outsider view of someone who knows you really well, like my mum and my dad, they can just tell what's going wrong. So at the beginning they were like learning with me, and saying, 'Oh I think it should be this many units' and I'd be like yeah I sort of agree.

So it is a learning process to start with?

Yeah, definitely.

So for how long were you on the Humalog?

Quite a long time, it's only [pause]. Four or five years? No about four years.

So that takes you to when you were sixteen years old?

Yeah, roughly.

They suggested you change the insulin, or you suggested it?

I had - I kept going really low in the mornings, and then bouncing high in the aft - evenings, and although I worked closely with the diabetic team, they couldn't - we changed my diet, we changed how - what place you did it, because that affects it and - we just tried all the variables, and they discussed it with me. They said, 'Do you want to do this?' and I said 'Yeah, okay I'll try it', and then - yeah, they suggested it. They didn't tell me I had to, because obviously it's your choice.

And then you get to choose.

So you started on four - you are on Lantus and NovoRapid now?

It's still Humalog, but it's just a different type, different mix. It's just fast acting. And then the Lantus is really long acting. You have to do that once and then you have to inject for each meal.

Says that if you let it, diabetes can rule your life and she doesn't like that. Her control is roughly balance meaning it has never been very good or very bad.

After a few - I think it was a few years it was being - the control was a bit wobbly, so I went, obviously going to the clinic, and they advised me to go on to four a day, just try it, and if I didn't like it I could go onto another one. So I tried that and it was so much better, because I like to fit my diabetes around my lifestyle. I don't like the fact that sometimes, if you let it, it can control how you live. So the four a day can - you can control everything - like what you eat, when you eat. You don't have to keep up diet or anything. 

How good is your control now?

I go through patches. I'm in quite a good patch at the moment. It's generally quite good. My Hb is usually seven, or above I didn't go below seven, but that's quite good but it is my aim to get it six [laughs], but it's never been too bad. It's always averaged out quite nice, but I do go from week to week. I sort of swing from good to bad, and then the bad times, sort of, it makes you think, 'Right, I've got to control it', and then you get a good patch, but it's roughly balanced.

Has it always been like this, or not, that you go through these patches?

Yeah, I think I've always been like that. Yeah, well, it's not real bad, and then real good. I suppose it's - if you're going to bracket it, there's like the good bracket, and it just goes up and down towards the bad, and towards the good, and it just sort yeah.

And how have you found that in itself?

It can be distressing at times, it can, but -

Why?

- I get - me personally - I get quite frustrated if I can't get it right, because I know that if I try really hard I can. But you get [sigh] I do -

What does it mean to try really hard? What do you have to do?

Keep up the tests, and think about what insulin you're doing. Be more vigilant.

What do you mean - what you are going to eat and'?

Yeah.

What are the amounts you are going to eat?

Yeah, all that type of stuff.
 

She is restricted in the choice of carbohydrates she can eat following a diagnosis of Coeliac disease (needs a gluten free diet). Despite this her diet is healthy.

Tell me when you were first diagnosed, did you have to make a lot of changes to your diet?

I think I did, yeah, because mum - we didn't have any low sugar stuff, or diet stuff - because it was not what we thought about. And mum just sort of made the swap one day, when she went shopping, so it was like low fat milk, low fat cheeses, and low sugar everything. We had no sugar drinks and stuff. It was good for the whole family's health, really, I think. It was very healthy and - I did have to change it, and I had to watch what I ate, because if I was out with my friends, they all go round and get boxes of soup and stuff. I'd eat them, but not as I would before. But it's not too much change.

A few years after that I was diagnosed with coeliac disease - I can't eat gluten, which is found in, like, wheat and barley and oats and stuff, and mum helped me a lot with that, because we talked to the dietician, and she - mum is amazing. She likes cooks and we make our own bread, because you get a lot on prescription, but then we do make a lot of our own stuff. It's hard at first, but then once you get to know and you get in a pattern it's okay.

So you can't eat'?

Gluten.

Gluten. So that's eating bread, cakes?

Well it's quite a lot of bready stuff. I know it sounds a lot, like bread, pastries, pizza, pasta, but you can get substitutes for everything, and I rely on potatoes for my carbohydrate a lot [laughs] I eat crisps and potatoes and jacket potatoes, boiled potatoes [laughs].

It was helpful that I could still eat proper carbohydrates and stuff, when I was diagnosed. Because I would have found it more difficult if I had Coeliac, but the fact that it came in stages it's ok.
 

She used to go to the school toilets for her injections but now feels more comfortable about it because she's talked to her friends.

Yeah, bringing it home was weird, because you think medical things are for hospitals, and you don't really - but - it was a bit scary. But once you get over the initial shock it's just something you do every day, and' It is awkward at first, and I didn't want to tell anyone. But I had good friends, and you talked to them. They would be a bit shocked first of all like mine were and then slowly they were like, 'Oh, that's okay'. And I remember I used to go to the toilets to do my injection, if I ever needed to do it at school, which I didn't in the beginning. But if I was at sleepovers or staying round my friend's house, I used to hide away. But they got used to it, and I got used to doing it in front of them, and I just carry on with them now like if I'm - even if I'm out and about I just - I know that's debatable, but I feel comfortable with it and -

So you feel comfortable doing it now, in public places?

Yeah. I think it's just - as long as you make people around you aware, and as long as you tell them, and they're not scared of needles, then you should be okay.
 

She found it easier to write notes telling her teachers that she has been diagnosed with Type 1 diabetes, because she felt uncomfortable talking about it.

And I've always told the people I'm around with, this is what you need to do.

In case you have a hypo?

It's awkward at first but once you've done it a few times... I remember when I was - when I first went back to school I didn't want to tell the teachers, but I knew it was important to, like, all my subject teachers, so I, like, wrote it on a slip of paper, on a computer, and printed it out, and cut them up, and just gave it to each of them and was like read this, read this [laughs]. That's what I actually did, because I didn't feel comfortable telling them, and so I just found it easier to just give it to them [laughs] so I did.

Okay, why? Why were you not comfortable?

I didn't like saying it myself. The first few weeks I couldn't say it [laughs].

Why, it was upsetting?

Yeah, it was upsetting, but I got over it, so'