Interview 27

Age at interview: 25

Age at diagnosis: 24

Brief Outline:

She had no symptoms and her diabetes was diagnosed when she registered with a new doctor in a new town. The GP phoned her at home and said that they have found sugar in her urine. At the GP surgery she was told that the results were inconclusive because she neither fitted type 1 or type 2 diabetes profiles. She was advised to go and buy a glucometer to check her blood sugar levels and to avoid eating sugar. She waited for about three months before she saw the diabetes care team at the hospital. After further tests they concluded that she has type 1 diabetes but what they call LADA (Latent Auto Immune Diabetes in Adulthood) also known as Type 1.5. At first the consultant put her on tablets like for those with type 2 diabetes but after a month she had to start on insulin injections. She is on NovoMix twice a day.

Background:

Journalist; shares a house with other young people. Says that when first diagnosed she had no idea what diabetes was all about and that she had loads of questions but no one to answer them.

She uses a device called PenMate to help her do her injections.

I think at first I was really scared of having hypos and things, and also of the needle. That was my main worry really. And I just found it really difficult to, I inject in my stomach, just really difficult to like, to just do it to myself. So what I do now is I got, it was only a couple of months ago, I got a special device that goes over the top of it, which triggers, triggers the needle. So I just pull it, like pull it back to kind of get it in place, and then it's just a case of pressing a button and it shoots the needle in. So I don't have to physically do it. So, and that's much better. The only problem with that is that I'm finding it bruises me sometimes. And sometimes it hurts, sometimes it bleeds a little bit. But I get on with it because I have to do it really.

Have you told your doctor about it?

Yes. I mean they were saying it shouldn't, it shouldn't hurt. And I might, I might go back and talk to them about it again. Because sometimes it's fine. But like this morning for example, you know, I don't know if I just, you know, hit a capillary or something, but it's just a bit sore.

So you always do it in the stomach?

Yes.

Yes. And I've tried in my legs a couple of times, but I don't know, I don't know if it's part of like my fear of needles, I just kind of think, 'Oh, but it might, you know, I don't know, might hurt'. Whereas here I've got, you know, enough fat to, you know, like as a cushion really. But it's funny, before I was diagnosed I had no idea about diabetes. I thought that diabetics injected in, like in their arms, like in a vein. I didn't realise it was just under your skin. So I was a bit relieved when I found, found out that.

And this thing that you attach to your pen and you just press the button. Where, who suggested that to you?

Well, I asked about it. I'd, I think I'd heard that there was some, this kind of thing. No, oh, no, actually, sorry, it was that the nurse had mentioned before I went on it in the first place, saying that they, there was that, but she'd rather, you know, I tried myself first. So I did.

And what's the name of this?

I can't remember. It's called like an autopen. Or, no, PenMate, that's it. And it just slips over the, the top of it.

And are you still kind of afraid of injections or how are you coping with it?

It's okay, it's okay now. I think before I just, I couldn't bring myself to do it. Well, obviously I did, but I'd just kind of sit there for ages sometimes just kind of, and I know you're meant to do it really fast, and I just couldn't. And I'd just do it really really slowly. Which of course made it kind of hurt a bit more sometimes and just made the whole process longer, rather than just doing it. So now I don't really think about it.

She feels lucky to have been diagnosed with diabetes because she didn't have any of the 'classic'...

It was quite, well, it was quite lucky I suppose the way that I came to be diagnosed with diabetes, because I'd been living, I'd been living up in [city] and I moved down to [city] for a new job. And I'd been here a couple of months before I got round to registering with a, with a doctor because, you know I didn't feel that I needed to. But I thought, 'Oh, yes, I'll register with a doctor'. And so I went and as part of the registration process they do a series of tests and you have to take a urine sample along with you. And so I was doing, you know, I was having a chat with the nurse, and then she said, 'Oh, I'm just going to go and check this'. And then she came back and I could see she just looked a bit concerned and she said, 'Have you been ill recently?' And I said, 'No'. She said, 'Have you had any symptoms?' And I just kind of thought, 'Symptoms of what?' And I was like, 'Well' I said, 'Well, I've been quite tired, but I just, I mean I'm a journalist and that kind of just comes with the job. And moving to a new house, moving to a new job and everything else, that goes with that really'. 

And she said that there was some sugar in the sample or, you know, or words to that effect, and could I go back for a blood test at 9 o'clock in the morning the next day? And she said, she was really nice, she said, 'Oh, you know, it's not because it's urgent. It's just so, you know, we get it out of the way so that you don't worry about it'. Although looking back I think it's because, you know, it was urgent. She just didn't want to worry me with it. So I had a fasting blood test and they said that they'd phone back the next day if, you know, if it was found that I did have diabetes. 

She has had very few highs (or hypos) and uses her blood glucose test result as a guide as to how...

I think because I check my levels so often I can find, you know, I know when I'm having one, or I know that, if I'm likely to have one, if my levels have been low in the morning and I've, if I've done a lot or if I've not eaten very much. So I mean I think the nurse said I am a bit too fastidious with checking the levels. It, I do it like four times a day, sometimes more. But, and I guess it does sound a bit obsessive, but I just like to know how I'm, how I'm doing, you know, just where I'm, where I'm at really. Because then, you know, if then, like at lunchtime, you know, I check before lunch, then I know or I've got an idea what I should go and have to eat for lunch, you know, whether I should have a big jacket potato or whether I should have something smaller.

It depends how high. I've only had a couple of experiences where it's been over 15 or 16 and that's generally, I think that's been when I've been ill, you know. I know that obviously it goes up when you're ill. And I got some ketone strips from the nurse. So if it is then it, it's just a case of using a, doing a urine sample on the stick. And, but it's been negative for ketones when I've done that. So, yes, I've, and I phoned I think the first time it was high. I think it was, I can't remember what, a bit like the, it was when, it was out of working hours, so I think the nurse wasn't there. I couldn't get through to her. And I phoned Diabetes UK and they just kind of said, you know, it was all right, just to keep on my normal, my normal regime. Which I did.

So there's only been a couple of times?

That it's been really high, yes.

She doesn't hide her diabetes from anyone and talks about it so much she thinks she's become a ...

I mean obviously I've, I have told all my friends that I, that I have diabetes. I've never had any problem with that. That's one thing, I've never found it something embarrassing or anything that I've got to hide from people, you know. I want people to know. And also I can be a bit of a diabetes bore sometimes, you know. I just want to tell people what, what it is. Because I didn't know what it was really before I had it myself. So if the, if the topic ever comes up I just go, 'Oh, yes, well, this is Type 1, this is Type 2' and just go into the whole explaining thing. And I think, yes, I have said, you know, that, what the signs of a hypo can be. I mean most of the time when I go out it's, it's with my boyfriend, and he knows, he knows about it. And I've, he's never had to do it, but I've taught him like how to test my sugar levels. And he knows that, you know, if I go a bit shaky then, then he's to get me, you know, some orange juice or Coca Cola. And I keep sugar tablets with me as well.

As a reporter she works shift and finds that fitting eating times can be a bit problematic and...

And at work, having diabetes, has it made any difference?

Not really. I mean I told, well, I told people at work first of all because I was in work and they wanted to know why I was really upset. But I'd already mentioned that I, you know, I'd been for this, for this blood test. And I told the Health and Safety Manager. I think it's just a formality, you know. They need to know. And obviously I had no problem with telling people at work. Plus it was important, you know, in case anything, anything did happen, you know, if I had a hypo or anything. And at work it's been okay. It's just with the nature of, of the job, with being a reporter, I work different shifts. So I usually start at 8 in the morning and then I'll take breakfast in. But sometimes, some days I start at 7 in the morning. Some days I start at 1 in the afternoon and work through till 9. So it can be difficult with those, with the late shifts because it means I've got to either take something in, but more often than not I'll just have my breakfast later in the morning and then eat something after I've got home. Just a case of always making sure I've got things with me. Once or twice I've been sent out on a job before breakfast, before I've had a chance to, eat anything. And that's the problem. Or if I've, or if I'm just so busy in the morning that I don't have time to do my injection and eat something. But say if I've, say if it's the case, you know, if I'm sent out somewhere to drive, what I'll do is quickly check my levels beforehand, and if it's quite low, if I need to have something to eat, then I'll do my injection and have the food then. And so it's just a case of trying to fit it, fit it around. I've not had any problems. It's just more been having to prepare things, you know, and just work around it really.

To be diagnosed with Type 1 diabetes is not the end of the world, you will get used to living...

I suppose what would have helped me at the beginning was to have someone just say, 'It's, you know, it's all right. It, you know, it will be okay'. So I think, that's what I'm saying, you know. You, you might have all these questions and worries and things and, you know, you might think it's the end of the world. And it's really not. It's just something that you've got to make a part of your life. Which is easier than you might think, than you might think it is. You know, there's lots of help out there and advice, and it will become something that you just do naturally everyday, you know. You've just got to get on with your life, not let it stop you. At the same time not, don't, not to forget about it. But, and I think it's also important not to hate it, you know. You've got to work with it, you know. It's a part of you. So just, you know, you have to just learn to accept it. And also it's important I think to try and find out as much information as you can yourself. It will all be there for you, but because, you know, you're the person who's got responsibility for managing it. But it's, you know, it's certainly, it's not stopped me doing anything in my life. So that's what I'd say to other people really. You know, this will be a confusing time, and it's, it can be upsetting. And it's a bit of a leap on to the unknown. You don't know what it means. But, you know, overall it's, you know, you get used to it, you get used to it. And it's not the end of the world.