Interview 30

Age at interview: 19

Age at diagnosis: 17

Brief Outline: She has blurred vision as one of her main symptoms prior to diagnosis. Her driving instructor asked her to have her eyes tested. She was told that she was long-sighted but, her symptoms which also included tiredness and thirst didn't improved. Her mother is a nurse and decided to test her urine and found she had ketones. She stayed a few days in hospital and at first, found it difficult to inject insulin. Testing her blood sugar level was also difficult but found it easier than injecting insulin. She remembers feeling scared of doing her insulin injections and stayed in hospital a bit longer for that reason. Found the nurses really supportive and friendly. Initially she was put on NovoRapid and Insulatard. She injected Insulatard in the evening but found that she had frequent hypos in the morning. Her Insulatard was then changed to Lantus. Once at university her HbA1C got gradually worse and her mum and a nurse talked to her about having an Insulin Pump. She decided to try one and has used a pump since last Christmas. Since then she has noticed an improvement in her blood sugar levels and a reduction in the number of hypos. She is due to have an HbA1C soon. Her mum bought the Insulin Pump.

Background: Second year university student; has a boyfriend; lives in university halls. Has done voluntary work for Diabetes UK. Says that you musn't allow diabetes to take control of your life.

She was 17 when she started to feel unwell. She noticed her vision was blurred during a driving lesson.

I was seventeen and half. I was going from lower sixth to upper sixth. It was during my summer holidays so I was really thirsty, had no energy. But I brought that down to it's summer, so obviously, it's a lot hotter so I'm going to be really thirsty. But then I needed to go to toilet like very frequently. And it got to the very end where I went to Thorpe Park the queues were like massive and I just couldn't queue for the rides because my bladder just wouldn't let me. 

So yeah my thirst, I'd drink a bottle of water and that wouldn't quench at all. And then I frequently go to the toilet. 

One of the main things was my eye sight went funny. When I was on my driving lessons, I couldn't see ahead of me. I couldn't read the registration plate and that's when my driving instructor said that I should get my eyes tested. So I did. But I went to not like a professional opticians, I went to what do you call it, opticians [name], and they checked my eyes and thought that I was long sighted. So they took, so I got a pair of glasses and everything and that. So I thought that was fine. I'd never had problems with my eyes before, but I thought, it's one of those things. What else was wrong with me? Just very tired and I felt quite lazy really, that I really couldn't do much, getting out of bed was quite hard. And so my mum said lets go to the doctors. So I thought, 'Right, I'll go to the doctor's'. I got my bike and I got to the end of road and I had to get off because I was so tired and that's not like me. So I went to the doctor and just said have a blood test and come back to me. But by that point, my boyfriend at the time, spoke to my mum, and just said, 'Like serious, [mother's name] she doesn't stop running to the toilet'. 'She's very thirsty'. 

I had like all ulcers in my mouth and just generally very dry. And my mum's a nurse and she came home because she was a bit worried. And she tested my urine and she found I had ketones in it.
 

She felt much better after being put on insulin but dreaded having to do her injections or test her blood glucose level.

So yeah, I was in hospital for about a week. And I was just on an insulin pump like one of them big hospital ones. And I couldn't go to the toilet by myself because of my drips and stuff but I was fine, my mum looked after me. 

I started feeling better straightaway really, like my ulcers started to clear up. My eye sight got better with in a week. As soon as I came out my eyesight was cleared up. I could see properly because before it was very misty and like, you know, when you wakeup in the morning and your eyes are quite blurry, they'd become like that. 

But that cleared up and so I was fine. And then I had about halfway into the week, I had [name] diabetes nurse come and talk to me and said that I needed to start doing my injections now. And that's when it kind of kicked in and I was a bit scared because I was like, 'Oh my god'. So they came, explained to me what I had to do, showed me all the pens. 

And he said… he got the needle out and showed me how to inject an orange and I was okay. And he said, 'Now you've got to do your leg'. I couldn't inject myself for like two days, like I'd go to do it and I was a wimp. I had cried, 'Oh I can't do it'. But I got through it and I'd done it my first time and I was really happy and I ran down the ward like, 'Mum I've just injected'. And everyone was like well done. So that was really cool. 

Doctors and nurses tell you the same information and give you the same advice but in very...

And the nurses are really helpful, they are really supportive. But they were quite firm with me. Like the nurse came round and was like, 'Right, test you sugar.' And I was a bit like, but she was like, 'Come on, you have to do it, you have to do it.' And I done it and I felt better for it.

And I had really good, the nurses there were brilliant. I had [name] first, he helped me do my injections. He was really supportive and then when I came home I had [name] because she's come to my house and talked to me about my blood sugars. And then she was really down to earth and normal and she's like, 'Obviously you want chocolate, obviously you want to drink. And we're not saying you can't do that.' But she just helped me bring diabetes into my life and it didn't, showing me that it didn't have to change everything, just a little bit.

Because when I was in hospital all the doctors were very strict and were very like, 'You mustn't do this, you mustn't do that. You shouldn't do that.' And really worried me. But like the magazine and nurses and stuff, they just say that, 'You can do this, you can do that,' but you've got to, it's all in moderation. You've got to be careful really.

So when you said the doctors were sort of saying, 'Don't, don't don't,'?

Yeah.

And that sort of, do you think that could be a put off?

Oh yeah. It was a bit scary. One of the doctors said to me, talked to me about his daughter. No, he asked me about university and then he said, and I said I wanted to go and then he said, 'My daughter goes and, or she parties all the time and she gets in at three o'clock in the morning,' and he was like, 'But you won't be doing that.' [laughs]. And I was like, 'Why not?' And just, I suppose he was there to just kind of tell me the facts really. So, yeah, doctors are quite scary. He said, 'You can't do this, you can't do that,' but then you have the nurses who are like, 'You can do this, you can do that, but you've got to incorporate diabetes a little bit. You've got to look after yourself while you do that.' Really.

Isn't that confusing?

Not really. The nurses were still like you've got to, like take control but you can have a drink, but you can't have, like rather than saying you can't, you can only have two, three units, they'd say, 'You can have a drink and if you have quite a skinful then you must do this.' Do you know what I mean?
 

Says that now it is possible to eat something on the go but that she couldn't have done that on a four injections a day insulin regimen.

Yeah. At first it was well by HbA1cs were getting worser and worser and I went into hospital by myself because my mum was working and I got my blood results, and it was 8.4 and like I cried and I was really upset because I'd try my best to keep control but it just seemed to be shooting up and I just couldn't do anything about it. I was quite upset. And then my mum knew that so she left the brochure on the side and I had a look at it and just reading about what people said about the pump, about how it prevents, not prevents but decreases the amount of the hypos you get. And just gives you more a more flexible lifestyle because at university I'm always running about doing something. With my injections, if I want to eat on the go it's quite hard because I've got to go into the toilet and inject myself. With the pump I can just type it in, type the amount of insulin I need and then I can have it on the go. And also with the pump it's more precise. If I'm eating two slices of bread I can, I know exactly how much insulin I need rather than with injections I'd be like roughly about four units. And then sometimes I'd get it wrong and it'd go high or go too low. But, excuse me [laughs] so my mum left it on the side for me and we had a look, had a look about it, look on it, and I said, 'Maybe I'd like, quite like to try it.' Because at that point I was, I felt a bit down because my diabetes wasn't as controlled as I thought it was. 

And I spoke to a pump rep and she showed me a pump and the infusion sets and I was a bit unsure because I didn't the like the infusion sets and how we put it in because it's quite a big needle, bigger than what I'm used. So it scared me. But, once you'd told, told me all the benefits like it'd reduce hypos and more flexibility and stuff I thought that it would be best for me.

So, yeah, and then I came on it at Christmas time, during the Christmas holidays and it's just really improved my blood sugar so much and it's interesting to see all my HbA1c will be like.

You haven't had one?

No, I haven't had one yet. No, I've got one due this, end of this month. So fingers crossed, it might have brought it down.

And what did the blood test results indicate, how you do?

Yeah, they're a lot better. They're not so high, low, they're more like that. 

OK.

Because normally, sometimes my sugars could go as high as 20 and, but now I haven't had like sugars that high for a long time. But I'm normally below 11, most of the time but, yeah.

Shall I show the pump to the camera? 

You need to get up. Okay so that's what an insulin pump looks like. Great thanks. 
 

Her mother got a loan to buy the insulin pump and consumables but the training and support was given by a 'pump rep' at the hospital.

We thought about it in the summer holidays. But then I decided to get it at Christmas. My mum applied for what's it called, PCT? Yeah, asked the PCTs because I felt, I fitted in with the NICE guidelines, because my HbA1c was quite high and was still quite young. But I wasn't making much progress at all like, it was taking ages for anything to happen. And, so my mum just said like, 'This is really important,' and she said that she'd get a bank loan for it. So in the end my mum paid for the pump for me and just before Christmas. And paying for the consumables. Because if we had to wait for the PCT, I wouldn't have it now, I don't think, I'd still be waiting for it because it just takes lots of time. But, we're in a process at the moment, they recognise me and I think they're going to take over payment for consumables quite soon.

It was a pump rep called [name]

She used to be a specialist diabetes, specialist nurse and I had a meeting with her and she gave me all the booklets and the information and I had about two hours with her where she just spoke to me about it, what it, what it would mean, what the insulin pump does. So I had, two hours with [name] and then she gave me all the information. And then when we ordered the pump, had lots of booklets from that. And then putting on the pump on the day, I spent about half a day with my nurse, [name] the pump rep and then [name], my actual diabetes specialist nurse, both there on the day, teaching me. And we had lunch together and she showed me how to work the pump and how to work out my carb-insulin ratio. 

And then for about a week or so I'd speak to [name], the pump rep, every day and she'd go through my blood sugars with me. And then after that my diabetes nurse took control of me and helped me through it. So I had quite a lot of help.

Do you know roughly how much an insulin pump cost?

I think it's about two and a half grand.

OK. Plus the '?

Oh, yeah, the consumables. Say, the infusion set and the wire'

Ah

They're, you have to pay for them as well but I don't know how much they are. It's quite an expensive business, pumps, I think [laughs].
 

Says that at first she was not so sure about using the pump because she had to attach it to her most of the time.

Are you happy with it?

Yeah. At first I wasn't too sure because I didn't like this, like, thing being attached to me all the time and like sleeping, I'd always get it all wrap round me and I couldn't really sleep with it. And I was worried about what my boyfriend would think. And how, wear it with my clothes and stuff. And it's still, it's still quite annoying like when I, when I have a shower or a bath I have to take it off but kind of it's helped me so much, helped my blood sugar that it's kind of worth that little bit of annoyance really. And I'm just getting used to it so much. Like before I, I'd wouldn't let anyone come near me because my infusion set, I'd always be like, 'Don't touch me. Careful.' But now I'm just so used to it, if anyone bashes it, it doesn't hurt. So I'm just, it's just part of me now really.

And the boyfriend? Does he mind?

No, he doesn't mind at all [laughs] He's fine with it.
 

A talk with the dietician made her realise that her diet was unhealthy and that some changes...

I had a dietician come to see me about my diet. And they didn't realise that I was pretty unhealthy really. 

What do you mean?

Just in the sense of like just the way I cook things. Just like the ready-made sauces, and like I'd eat a chocolate bar without even thinking about it' just stuff like that. I wasn't like major unhealthy but I could be a lot better. So she just explained to me how I'd have to be more careful with what I ate. That if I had, if I want to eat chocolate or anything like that, I'd have to have it in small portions or like with a big dinner. So that was really good.

What did you have to change in terms of your diet?

Cut out a lot of sweets. I don't actually cut them out completely just have them in smaller portions. Just eat a lot more healthy and make sure that I eat regularly like have my breakfast, make sure I have my lunch and my dinner because if I hadn't, if I didn't eat for about 4 hours then I'd gradually feel my sugars dropping and I'd need something to bring me up again. Just, yeah, just eating well. Like for breakfast, cereals rather than Frosties, anything sweet, I would have like proper Weetabix or Bran Flakes. Something which releases the least sugar, yeah, energy rather than being really, releasing loads in my blood at once, just releasing it quite gradually. Just cut out a lot of sweet things and just lowered my fat intake as well. Eat, I eat quite well. When I had takeaways I'd always get the healthy option. Just, it really improved my diet. That's one thing really positive that's come from this is that I've got quite a healthy diet now. I eat all my fruit and everything. Yeah.

So you haven't had problems, getting used to eating fruit and vegetables?

No, I'm quite, I like all my fruit and veg. So it's quite handy that I do. For, if someone like my brother he'd probably struggle because he loves his chocolate. Not that I don't but'
 

When she was applying to go to university she was scared as to whether she was going to be able...

How have they coped with you coming to university and have they been a bit anxious?

Yeah definitely.

Can you tell me a bit more?

My mum and dad are quite protective anyway. But I think they were very anxious when I came for the first time about eating well and drinking in moderation. Like whenever my mum calls me she always ask me about my blood sugar levels and how my pumps getting on or how my injections were. But I think that was a big worry for them as when I first came. So yeah' it was a big worry as well at first, when I first got here I was really quite scared. When I was applying for university I was like' I was saying to my mum, I'm really scared because I don't think I could do it on my own. Like I was worried about keeping control of my diabetes without having my mum and dad around but, it's being good, being good for me to be able do it on my own. 

So you have passed that initial stage in which you were unsure'

Yeah. Yeah.

'and worried?

Yeah. 

Okay.

Going anywhere like moves' I worried myself, when I went to Paris for a field trip and I was so worried about, 'Oh have I got all my right medical equipment and stuff'. I still get quite anxious myself and know my mum does and my dad as well. They try not to show it but I can tell [laughs].

Don't be scared and as long as you control your diabetes and do your injections, diabetes does...

I done the skydive last May and raised about '500 for Diabetes UK. Like when I first diagnosed with Diabetes I was, didn't think I could ever do something like that because it seemed that it restricted, it restricted me. But it doesn't restrict you at all in anything you do. I haven't found, it's not stopped me doing anything. If anything it stopped me from eating too much chocolate cake, which is only good [laughs]. But, ye, not to be so scared with it at first because it, it seems very daunting and that you'll never make it but it does take time, you get used it and you get used to how your body reacts to certain things and then before you know it's just second nature and you don't even budge when you do it. It's, if I didn't have to do anything for it now I'd probably be quite, ohh. It's like when I first come off my injections I quite missed them in a weird way. Because I'd been doing them for so long. But just to not be so scared because it's, as long as you look after yourself and do your injections or be on your pump then everything's fine. It's nothing to be scared about.