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Interview 14

Age at interview: 22
Age at diagnosis: 9
Brief Outline: Her diabetes was very unsettled for a long time but recently she has managed to have and maintain good control. One of the main motivations for doing so is that she and her fianc'e would like to start a family after they are married. She says that the media often reports scary stories about pregnancy and diabetes and that it is important to say that women who have good control do have similar chances of having a healthy baby as non-diabetic mothers. Currently she is on Lantus and on NovoRapid.
Background: University educated; engaged; she is one of five children, lives at home with parents and siblings. Unemployed and is applying to the Prince's Fund to start her business as a photographer.

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Explains how the nerves and blood vessels of her feet are checked.

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How often do you go to see the consultant?

Every six months

Every six months and what happens when you go to see them?

It's quite easy I went yesterday [Laughs]. My MOT as I call it and I went in yesterday it wasn't the full' I didn't get my eyes photographs because it was done the previous and walked in and the nurse, she did my blood pressure, weighed me, when I was younger they took my height as well to see if I was growing and did a urine test. Sat me down to see my consultant and he always ask, 'Any hypos? Any big hypos?' and then talk about what is going on in life. He would then say 'I've got your big blood test', because before you go to clinic, about a week, two weeks you go and get a blood test in your arm to test your overall reading. Then, he would do the buzzing test on your feet to make sure they are okay. Yeah, that's it really.

The test in your feet what does he actually do?

Yeah, well he told me to clinch my fist and he got the machine, it looks like, you know the thermometer they put in your ears, well it looks like that, long and thin and like a white thing on the end. Close you fist and it touched it and he said 'tell me when it's the buzzing' and I say yes now. And then he tests your toes, along each toe and along the sole of our feet, then you put your foot on the floor and tested the pulse in your wrist and he said to me, 'This is weird I can feel the pulse better in your foot than I can in your wrist', and they he had a poking pole, a long thin plastic and he touched the bottom of my foot and he said, 'Every time you feel say yes,' and I went yes, yes, yes and then he went all over my foot.

 

She is taking medical advice more into account now. For instance she is checking her blood...

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Now you, how many times a day you check your, your sugar levels?

[Sighs] I admit I don't do it as often as I should but I do try and do it with my breakfast and before I go to bed, and then during, during the day if I don't feel very well at all but my doctor yesterday actually said if I can get my glucose, blood glucose checked two hours after my breakfast then I will have a better idea of how much insulin I actually have. Because at the moment I am actually giving myself a dose of insulin on the basis of what I'm going to eat, so if I'm gonna have a fairly, a large lunch if I'm out and about with my family and friends or with [name] then I will have a, obviously a larger lunch, whereas if I'm at home I'll just have a sandwich and something quite small and then obviously a snack sort of mid-afternoon. So I will actually give myself insulin on that basis but my doctor has said that it would be better if I know exactly how much insulin to give myself so if I do my, my blood sugars two hours after I have a meal then I'll know, you know, what I'm supposed to be, supposed to be taking.

There haven't been sort of periods in which you, you haven't?

[Sighs] I think [sighs] during my rebellious days, if I have a rebellious day then I won't do it, I'll just say, 'No, I know how I feel'. You know, I'll just, I'll take it when I want to. But at the very end of the day I'm not doing myself any favours so I don't [laughs] I don't have days like that very often because I'm thinking, 'Well now I'm a little bit more grown-up, a little bit more mature.' I'm thinking, 'Well it's not just today I've got to think about I've got to think about tomorrow as well and what complications I could be causing myself later on in life'. Because as I look around when I go to clinic I see lots of elderly people and they've got walking sticks or they're in wheelchairs or, you can quite clearly see that they've had problems with their feet. It's like I say shock tactic, I'm thinking 'well in sort of forty, fifty years time I don't want to be there, I wanna be able to, to run around and enjoy life and still be able to do all the things I enjoy doing later on in life', so I'm not gonna do that to myself now. So I think to, to look after yourself and to, to actually take care of your illness then, you know, do it now and so then you can still carry on having fun when you're older.

 

Explains how she feels when having a hypo and how fast her mother is at recognising her symptoms.

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But how do you know that you're having a hypo? How do you feel?

[Sighs], well, diabetics have different symptoms, they, somebody will probably not have the same as what I had. I feel, I feel very weak, I feel as though, you know, okay, right. and then I will feel shaky, and it sounds weird but I do actually have pains that go down the fronts of my legs, I have a really weird feeling or sensation that goes down the front of my legs that will tell me that okay I'm having a hypo. Sometimes I'll feel very, very hungry, sometimes I'll go into a cold sweat, or if I don't notice it myself, my family's, my family will notice I get very, very giggly, I will laugh at absolutely anything, and they'll think 'okay well she's either having one of her, her funny moments' as my mum calls them, or I'm going low. So, you know, it's always best to test my blood sugar, and sometimes when I am actually only having a funny moment then I get quite annoyed [laughs], I'm thinking 'right it's okay, as soon as I find something funny, you know, they want me to do my blood sugar' so I do get very, very annoyed. 

But yeah it's if your family and friends know your symptoms then they will, you know, they will, they'll help. And one of, one example I'm sat there in the kitchen with my mum and my boyfriend and all of a sudden, deathly white, and you know, I'm, I am just sitting there, not really making sense and mumbling about absolutely nothing, next thing I know my mum's got a bottle of Lucozade in my hand. And, you know, well [name] was like, 'Well, what does she need that for? You know, she hasn't said she's going low'. My mum was like, 'Look at her'. You know, 'She is going low'. And my mum knows, exactly, you know, and we tested my blood sugar, two point two so, you know, so, yeah. I think if the people around you can be made aware of your symptoms then, you know, they will know before you do [laughs] to, that you need to take something.
 
 

Says that high blood glucose levels made her feel depressed and that her diabetes doctor has...

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Yeah four in the evening and I think it was ten in the morning, so eh yeah, God that was a long time ago [laughs]. and then I stayed on Human Mixtard for a long time, a very, very long time and it wasn't until sort of my teenage years where I don't know whether my body started becoming immune to it or it just wasn't suiting me any more because of the, the changes in me, but my blood sugars were constantly high, I just could not get them down no matter what I did.

When you say high'?

High they were, like high teens sort of eighteen, nineteen, twenty, they were constantly up there and there was a few occasions when my blood sugar was that high the machine just wouldn't read it, it was 'hhh' and that was scary because I was not a nice person to know when I'm high, I get very, very moody and very, very sort of, you know, snappy with everybody and like, leave me alone I don't want to talk to and, although you know you have to move around to try and get it down, you just don't want to. You feel like curling up and going to sleep so like I say I'm not a nice person to know when I'm high. But, at the end of my Human Mixtard stint I was on [sighs], a very high dosage, I think it was up to, about sixty in the morning and about fifty-odd in the evening, I was having a lot of insulin and it just still wasn't bringing it down. And because I was having more insulin I was eating more because I was hungrier and I was putting more and more weight on and it just wasn't healthy. So when I went to the clinic my specialist actually suggested I go onto four injections a day, and to think, and then I thought 'well I don't really want to do that if I possibly can, is there another option?' So my diabetes nurse came round and she discussed other types of insulin that I could take and then I tried another one which was Humalog I think? Yeah? I think I tried that one, but that didn't do anything so I thought, 'Alright then, fine we'll try the four injections and see how that goes,' and so far it's been okay.

And which type of insulin is it now?

I'm on NovoRapid and Lantus, and I take three injections of NovoRapaid and one injection of Lantus which is 40 units with my breakfast of the Lantus, which is the long acting it sort of slowly releases into your body and goes through the day and keeps you through right till breakfast time the next day. And then I'm on small doses of the NovoRapid which I have with my breakfast, my lunch and then my dinner and then if, because it's so flexible, because it's such an easy insulin to take, if I'm gonna have just a very small snack of an evening before I go to sleep I won't have to have any more. But if, say for example I'm out with my friends of an evening and I know we're gonna go to the chippy or something after we've been out I will have a few more extra units so it's, sort of four, five injections a day sometimes, whatever, you know, I'm gonna eat. So and, it seems to be working, I've managed to get my overall reading down to seven point eight percent which is very good because for a long time it was up to ten and eleven and that's when the damage started being done [sighs] so fingers crossed I've managed to get it down and it's gonna stay there now.

 

She thinks that the bag that she used to carry her snacks and insulin kit got the attention of...

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So when you were growing up with diabetes, perhaps one of the most difficult times is when you are in secondary school?

Yes, yep, definitely because, you get bullying everywhere, I'll admit that, everybody'll admit that, but you know? [Exhales] you just deal with it, if you had the kind of attitude well okay I'm here, this is what I have, please ask a question, please, you know, you know, ask em, 'Why, why, why', why're they stood there laughing at you, or making rude comments? Blatantly go and say, 'Well, you wanna ask a question please do, I have as much information as you want'. Or, 'Please go on this website'. Or, 'Please go to the doctors'. Or, 'Ask, there's plenty of leaflets'. And, and you know, all sorts that, you know, there's so much information about diabetes or any other illness, or disability, or whatever out there, and if these people instead of stood there making fun at you did that then the world would be a much nicer place.

Was it because you were injecting in public or?

No.

Because you happened to have diabetes and they didn't know what it was all about?

Yeah, really I think the most [exhales] the most of the problems came from the fact that I had this little leather handbag and I was carrying it around with me, 'cause we didn't have pockets in our uniforms, you know? And we weren't allowed to carry our rucksacks or, our, you know, big bags around with us all the time. And everyone knows you're gonna have something with you all the time because no-one knows when and where a hypo will strike. [Dog barking] so yeah, yeah, I think, mainly, yeah the problems came from that, my little leather handbag [laughs].

You were different?

Yeah.

In which way? 

Absolutely yeah, no-one likes anyone that's different, so. 

Let's talk a little bit about your experience in secondary school? Did you talk to your Mum around that time?

Yeah. I think well if I didn't have her or my dad, I wouldn't have got through it, you know, so, well sometimes it was very, very difficult and sometimes I was just, you know, [sighs] where do I go from here? And, okay so I've sounded quite positive, but, it wasn't easy, you know? To say, yeah to say that I was constantly ill, oh yeah it's fine, you know, bully me I don't care, to say that would be a lie. because it wasn't easy, at all, it really was not because it's not, you know, at the very end of the day, bullying, it's not right, everyone knows that, even the bullies know that, bullying know, you know bullies know that you shouldn't make people feel like that.
 
 

She questions the attitude of people who feel diabetics should inject themselves privately.

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The big controversy as well, doing injections in public.. A lot of people are very sort of, 'Oh no, well why can't you, why can't you go somewhere else? Why can't you go to the toilet and do it for example? You know, people don't wanna have to look at that'. And one example really was only recently, was when I first started University, we're sat there in the canteen, we're all about to have something to eat, I whipped me pen out, you know, bang into my leg, done and my friend [name] was like, 'Well, well why can't you do that somewhere else? Why do you have to do that in front of everybody? You know, can't you go to the toilet? I think that's really, really rude'. And [laughs] I sat there with my mouth open and I said to her, '[Name] I need this to keep alive, you know, it's keeping me alive as is that meal I'm just about to eat'. I says, 'You have a problem with it look away, nobody's asking you to look'. You know, and absolutely everybody were, you know, on my side, well they're saying, 'Well, you know, what effort is it for you to turn your head away and not look? Whereas what effort is it, effort it is for [Name] to get up, take herself off somewhere else, into a toilet where it's not very hygienic at all, well when, so when, why should she have to?'. 

And I was quite shocked actually that everybody else was sort of like, well okay then. I wasn't just me, or just me and my friend [name], from secondary school, we were alls, yeah they were all on my side, and you do find there's a lot of ignorance, a lot of ignorance in, you know, in the, in the world. For example I went to a supermarket caf' and it was fairly early but I was very, very hungry and I thought 'okay well if I'm not going to have something now', I think it was about ten o'clockish and I hadn't, had a lot of breakfast and I'd started feeling, okay well I'm going to have to go get myself something to eat. So I went and sat down in this caf' and okay admittedly, yeah I had a fairly big meal for that time of day, and I thought 'well okay, if I have this now I won't have to have any lunch until, you know, one, two o'clock'. And this woman looked over at me and she went, 'Hungry are we?'. And I thought, 'Well what's it got to do with you love?' [laughs], you know, so I went, 'Well yeah'. And she kept blatantly staring at me the whole time, so I sat down, and I thought 'Okay well what's your problem?' [laughs], you know she was really staring at me. And so I thought, 'Okay I got me insulin pen out, straight into my arm and she sat there with her mouth open, and thought 'well', you know, I looked at her and went, you know, openly sort of said okay then you want to ask a question please do so, and she just, you know her head went down and she wasn't looking at me any more, she actually sat there like this [laughs]. So I think, 'Well why?' I really don't understand why people have to have a problem, or why they have to blatantly stare at you and she didn't any more, she completely avoided looking at me. And I think 'well it's petty, it really is'. And I think if everybody else could have that kind of attitude as in well okay, you want to ask a question, you want to look at me, please do. And like I say, it's not everybody, yeah, not everybody can.

 

She describes how her Mum reacted when as a teenager she had rebelled against diabetes.

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Yeah, I do have my moments, I do have my rebellion moments and, I still do, which, you know, you will do sometimes I mean, I've now got my fianc' on top me as well saying, 'Come on you've got to have a snack now'. And sometimes you're thinking 'I don't want to, I don't want, I don't wanna play any more, I'm fed up now' so you do get a bit fed up sometimes. But my mum she's quite a, [sniffs] how do I describe her? She's, she's a great woman, I love her with all my heart she's, she is been my rock throughout my life, and she's like, 'Oh right then well what colour flowers do you want at your funeral?'. And, you know, she, that's how she deals with it [laughs], you know? If I'm sat there saying, 'No, I don't wanna take my insulin, no I don't wanna do my blood sugars', 'No I've had enough I'm fed up now'. That's how she'll deal with it, she'll say, 'Oh right fine, what flowers do you want at your funeral?'. Or, 'What fruit d'you want me to bring you in the hospital?'. Or something like that, she's, and it works as well, you know, shock tactics of thinking 'oh okay hang on a minute' [laughs]. You know, 'Oh alright then I'll do it'. [Laughs] so and like I say it does work she [laughs] bless her, she, she's just like that, you know, she'll just say, 'Well okay fine, fair enough you don't wanna do it it's your choice but, I'm not gonna come and visit you when you're ill'. So it's, it sort of shocks you into thinking, 'Well hang on a minute it's not just me, I've got to think about you', it's all my other family and friends that are gonna have to witness me being poorly so, I think I do it for them as much as I do it for me. 

So I've, as far as sort of fussing too much it's my grandmother, my nan, she's the one that fusses too much and constantly tries to protect me from the world but she still calls me 'her babby' [laughs]. And yeah it's her I have to sort of say, 'Well look I'm twenty-two now, I'm not a baby any more'. Just sort of try and keep her at arm's length as much as I can.

 

She knew her mum hated giving her injections in the beginning in case she was causing her a lot...

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My mum did obviously yes the, 'cause there's certain areas that you can't reach yourself she's always sort of, 'D'you want me to do it for you?'. It took her a long time to really come to terms with having to inject her own daughter and every time she would do it, you know, she could see it would hurt if I flinched and, she would always apologise and end up in tears, then we'd all end up crying and I'd be, 'It's okay, it's okay.' You know, 'You keeping me alive'. And it was, like I say, very difficult to start off with but as, as time went on I adapted very, very quickly as you do when you're a child and'

What did you find difficult, the idea that you have diabetes or the injecting?

Not the injecting as such no I think it was the idea of I've got this mammoth illness that's gonna be with me for the rest of my life, it's a lot to take on and I thought, 'Well okay what's it', to start off with I was thinking, 'Well what's it gonna stop me from doing?' because I'd heard, you know, you hear horror stories all the time. And I heard that you can't, it was gonna stop me from doing certain things, and the idea of having, you know, my dreams squashed at such a young age I think, apprehension I think was the main thing, it's sort of what's it gonna stop me from doing? Am I gonna be able to carry on and go off and do what I want to do? 'cause all of my friends were running around saying, 'Oh yes I'm gonna do this when I'm older, and I'm gonna do that'. And somebody asked me what I wanted to be when I grew up and I said, 'I don't know any more'. Because when you're that age you've got so many ideas and, you know, you want to run off and join the circus or, actually, [sighs] oh gosh I remember at primary school at one point me and my boyfriend at the time wanted to just run our own fire station, you know, I want to be fire fighters, so obviously that didn't come about [laughs].
 
 

Said that if bullies understood about diabetes rather than making fun at diabetic people the...

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So when you were growing up with diabetes, perhaps one of the most difficult times is when you are in secondary school?

Yes, yep, definitely because, you get bullying everywhere, I'll admit that, everybody'll admit that, but you know? [Exhales] you just deal with it, if you had the kind of attitude well okay I'm here, this is what I have, please ask a question, please, you know, you know, ask 'Why, why, why,' why're they stood there laughing at you, or, or making rude comments? Blatantly go and say, 'Well, you wanna ask a question please do, I have as much information as you want'. Or, 'Please go on this website'. Or, 'Please go to the doctors'. Or, 'Ask, there's plenty of leaflets'. And, you know, all sorts that, you know, there's so much information about diabetes or any other illness, or disability, or whatever out there, and if these people instead of stood there making fun at you did that then the world would be a much nicer place.

Was it because you were injecting in public or?

No.

Because you, you happened to have diabetes and they didn't know what the bag was for?

Yeah, really I think the most [exhales] the most of the, the problems came from the fact that I had this little leather handbag and I was carrying it around with me, 'cause we didn't have pockets in our uniforms, you know? And we weren't allowed to carry our, rucksacks or, our, you know, big bags around with us all the time. And everyone knows you're gonna have something with you all the time because no-one knows when and where a hypo will strike. [Dog barking] so eh yeah, yeah, I think mainly, yeah the problems came from that, my little leather handbag [laughs].

You were different? In which way? 

Absolutely yeah, no-one likes anyone that's different, so. 

Let's talk a little bit about your experience in secondary school. Did you talk to your Mum around that time?

Yeah

Okay.

Yeah, I think well if , if I didn't have her or my Dad, I wouldn't have got through it, you know, so, well sometimes it was very, very difficult and sometimes I was just, you know, [sighs] where do I go from here? And, okay so I've, I've sounded quite positive, but, it wasn't easy, you know? To say, yeah to say that I was constantly ill, oh yeah, yeah it's fine, you know, bully me I don't care, to say that would be a lie. Because it wasn't easy, at all, it really was not because it's not, you know, at the very end of the day, bullying, it's not right, everyone knows that, even the bullies know that, bullying know, you know bullies know that you shouldn't make people feel like that.

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