No, well, for me, I was quite honest, I just tell my doctors that I haven’t done this, I haven’t done that. They’re going to lie to you [laughs]. Terribly, but you’ll know.

About what?

No, just about what they’re doing, medication, things like that, they’ll lie. You’ve just got to, I kind of always knew that, for taking antibiotics, so if I wasn’t taking them I would just say, look I haven’t been taking them, rather than, ‘This antibiotic hasn’t been very good, we’ll try you on the next one. Well the likelihood is they haven’t been taking it. To be fair. It’s just knowing that they didn’t go through that stage, but they will come out of it. It’s nag, nag, nag [laughs].

Nag, in which way, how?

Just nagging, it’s repetitive and say, you need to do this, this is why, why aren’t you doing this, are you going to try. I mean [name] used bribes with me, he’d place bets, if I did something I’d get this, I did everything, it made it more interesting, more entertaining, and it eventually has worked. So, but basically I used to go in and I used to know what he was going to say to us every time, it was like, ‘Oh he’s going to say this again, he’s going to tell us to do this’, which just has to be drummed in, it does get there eventually.

Right. Paediatrics I started off with Dr. [name] and she was, I can’t actually, I was I think, I was about 10 when Dr. [name] came, and she was good. She diagnosed me, obviously my family loves her. And then Dr. [name] came and we were kind of, I think I was wrapped in cotton wool till that point. Basically wasn’t really aware of CF. I knew I had it, I had things sprinkled over my food, I had, I took these tablets, and that was about it, and I remember the first, the first clinic with Dr. [name], my Dad went along as well, because my Mum and Dad are divorced. And it was just horrendous [laughs]. It was awful, he basically said, ‘Right this is what’s going to happen, this, this, this’, my life expectancy, and I was like ‘what’s going on?’ I think I was crying my eyes out, my mum was, my dad wasn’t happy.

How old were you?

I was eleven. I was quite, I should have been more aware of what I had, and I, but from then, it did get better I think, when he came in, it was telling us what we had. And this is what it could be like. But to give you a shock so we would start taking care, and his words were, ‘You have to be a little bit more grown up than your friends to, you have to be able to know this, understand why and do these things, just to get past this time. And you do get like the teenage years, and I was quite close to them, kind, we get on very well, I still, I’m not actually there anymore, and we still e-mail and I talk to him quite a bit. I’ve done the Great North Run with him a couple of times as well. It was good that he did that, he kind of inspired me to learn more about myself and what was going on so.

They’ve all got nick names.

You gave them nick names?

Yeah. Dr. [name]’s actually called ‘Jesus’, [name] is ‘The Clown’, because the first time I had an IV, I was distraught, and she decided to dance around the ward as a clown for us. She was a bit odd, she’s like that. [name] I call ‘The Care Bear’ because she is so lovely and caring, and, my new nurse, [name], is, it’s the first time I’ve had a man as a nurse, ‘[name]’, he’s very crude, he’s actually quite funny, he just he has to censor things he says to most of his patients because it’s a chest clinic, and they are quite elderly, and then I come in and its just, it’s bizarre because everyone laughing and they’re all hiding in a whole room and one of the nurses, she’s a bit older, she walks in, and she’ll say, ‘Oh I don’t want to hear it’, she walks back out [Laughs]. Doctor [name], he looks like a thug, [laughs] he’s got quite short, shaven head, he’s always running around, he’s a surgeon as well, and he’s always just got a bag of crisps because he hasn’t got time to eat. And he signs his letters ‘Ali G. Because he’s called [name] but he signs Ali G, so he’s a bit of a nutter. And Professor [name], she’s lovely, she’s always asking, because we’ve got similar interests, and she’s got into diabetes because she loves metabolism, and that’s kind of what I like doing at university.

I do like my doctors, they’re all good. I think, if I did, I’ve always had someone that, with them being specialists that they know about the condition, they don’t, they’re not all deadpan me, they’ll just get on with it, whereas, if I go to see, I mean, when Dr. [name] referred me to Professor [name] for the CF for diabetes, she was quite the same, she was really good. But if I see anyone out of that field, seeing, one of them aren’t available, someone else is having to do the clinic, there’s a complete difference, you can tell they don’t fully understand the treatment that you’re taking. What’s going on, and especially with the diabetes and CF, I had to see a different diabetes doctor and he just didn’t understand why I was, my diet hadn’t changed, and he didn’t get the fact that I had Cystic Fibrosis, and I had to explain, and Gps, huh, huh, well.

What about Gps?

Well, Gps I just don’t go and see. They’re just, they’ve got, it is so general, they just don’t, I’ve had a GP ask me many a time, so when did you get CF? [Laughs]. Yeah its genetic, I was born with it [laughs] and I get things like, ‘Oh we need to go through your medication’, and they don’t understand. I’ve actually sat in front of a GP, and basically explained what was wrong, and what drugs I had to have, and they’ve just sat there. I could have said I want Black Tar Heroin and they would have wrote it down. Which isn’t a good thing, but they just don’t, A&E as well, I don’t get on in A&E. No I tend to wait until like my consultant is available and I’ll go and see them because I’ve been rushed into A&E before. I actually had a meconium ileus equivalent, which is basically a bowel blockage, and I had to explain that I had CF, I knew what was wrong and I had to said, ‘Look I’ve got this, I need to get, like have gastrograffin or something, and he did tests on us to make sure I wasn’t pregnant.” And I was like, I wasn’t happy. I was hysterical by this point because I was in so much pain, so he sedated us, and he didn’t even know I had diabetes, he hadn’t asked us anything, so I wasn’t a happy bunny. I got, I think I left at four in the morning, and at seven I was back at the hospital to see Dr. [name], who basically just touched like the top half of my stomach, and was just like ‘I can’t believe he didn’t know. I don’t get on with A&E.

He basically went when I told him things, he went outside, he read a book, they’d got a chapter on CF or something, came back in and told us what CF was and what treatment I was taking, I was like, ‘I know that, I’ve just told you.

This was a doctor or a medical student?

This was an A&E doctor. Scary [laughs]. So, I’ve got, I’ve got very little confidence in other doctors, rather than my consultants, which is, I think most people would say I was probably a pain in the arse for other doctors, other than the consultants, but they have [laughs], who wants specialist care? [Laughs].

I do biology so I find out all sorts. I’ll be studying something and then, probably less now, I don’t tend to look for things about me because I have learnt so much, but we’ll be doing something in a lecture, they’ll bring on, I mean last week I was doing nutrition, and we were doing about the human digestion, and certain things will come up like, people with CF have got more something cells than this, and I’ll think ‘Oh I didn’t know that’ and I’ll go and have a read on it. I should be reading something else because it’s the more key fact that I know it’ll be a random comment that he’s put in, but I’ll have a read on it. And because I was at Uni I didn’t realise when I was probably from the age of 13 I’d go on the internet and read books and on the internet I probably didn’t realise I was reading journals, but I’d read them, I wouldn’t understand most of it, but I’d get the basics, and when I got to Uni I realised I was, they kind of asked the question, ‘Have you ever read a journal?’ And we all said no, then they showed us what journals were, and I was like ‘Aha, I have been reading journals from quite a young age. But I’ve learnt quite a lot about CF from that, so. Especially, I think the hardest thing I’ve found out about, was about my, my specific genetic mutation because I’ve got the common F508 and F5I507 which apparently that one’s a bit more, it’s quite rare my combination, and it’s just a great lack of information. And how different mutations produce different symptoms of varying levels, which is quite’

Do you think there is a coincidence, or not, the fact that you are doing biology, your interest in metabolism, and the fact that you have ‘

Definitely [laughs] yeah. It has stemmed from me having CF that I like biology because my own natural interest in finding out about me has made me love doing biology, but now that I’m at university its less on the human side, I like genetics, I am, its genetics I’m good at, I do like parts of human physiology, not all of it, but I love doing microbiology, basically pathogens and bacteria and things which I shouldn’t be working with, but I love doing that. That’s my, microbiology and infections, things like that.

Then at Uni I mean they give you, the Disability Students Allowance and support, so I mean I’ve got extra time in exams, if I need to take it, so that helps. There’s always something there like, to help you along, especially at Uni, they’re really, they kind of go out their way just in case, like there’s special things where if I can’t make it to a lecture, I’m not well, my tutor knows and he pass and e-mail all my lectures, so they’ll forward all information, my friend got a Dictaphone so my friends will record a lecture for us, and everyone’s fine like if I’m stuck and I say look I wasn’t there, I was at an appointment, or I wasn’t well then they’ll just go through it, they’re really helpful, at Uni.

Okay so the Lecturers e-mail the lecture to you.

Yeah. It has to have, it’s a disability advisor goes through everything for you, they write something up, which was quite funny when she did, because she had that many cases to sort out, that she sent to me and it had multiple sclerosis and I was laughing because I knew she was under a lot of stress, and before I even got a chance to send an e-mail back, she was like, ‘I’m so sorry, you’ve got Cf [laughs] which was quite amusing. She was mortified, and really apologetic, and I was saying ‘don’t worry about it, really. It was the first I’d had that one, I’ve had everything else.

Yeah, I think that is a thing when you do, even like new jobs and stuff, I’ve never held back about saying I’ve got CF. I know for some it is an issue because they are not as well, and they do feel discriminated against, but for me its never been an issue, I just say look, I do have CF, I might not be well, it hasn’t happened in this job, I’ve never been off for my CF, but as I said, if I am unwell there is a reason for it, I’ll get a Doctors note, anything that you need, but I’m making you aware, and also because their health and safety officer has to know. So.

Which job are you doing at the moment?

I work at the [name] Insurance inbound calls basically, peoples policies.

So you are doing a full time at university and you are working part time?

Yes.

How many days do you work?

I do 15 hours a week. I work all day on a Saturday, nine till five, and then I do three nights a week, and it is really hard, really hard, for the amount of studying I have to do, I don’t get much of a social life, but I used to work in a bar, as a bar manageress and at the time, I was having I.V.s at the time, the smoky atmosphere was horrendous, but I think I probably had a lining of smoke filled mucous on us which protected us in the end, but now if I go out, one night out and that smoke hits us, and its shocking.

Okay.

Not long before the ban [Laughs].

And you do exercise?

Yeah well, I need to join a gym. But its just been this year, since I’ve went to Uni, that its been quite hard with my studying, but I was at the gym, I used to do, I’ve done four Great North Run’s, twice for CF, Marie Curie and Children with Leukaemia, all about three hours and under, and I’ve been fine, I love, and I do like jogging, as soon as I hear I’m doing the Great North Run I start training because I know I’ve got to do it, but at Uni, on campus I’m always on my cycle, pedalling round and things like that, so I play squash a lot. I go skiing. Skiing’s the one where I’ve got to prepare to go skiing, because the altitude affects, well it affects my chest so I tend to have antibiotics before I go, while I’m there and when I come back because the first two times I went, and the first time I didn’t take anything I came, by the end of the week I had a chest infection. The second time, I had antibiotics before I went, which was okay, I was fine when I was staying and I got back and I ended up with a chest infection again, so it’s the third and fourth time, it’s been antibiotics for about a month, while I’m, with the skiing holiday in the middle, just to make sure that I don’t get a chest infection.

What do the doctors say or advise you to do, regarding sport?

Do it [Laughs]. It’s good. I don’t actually do Physio, it doesn’t, it doesn’t actually benefit me, I don’t. I’m not productive, to actually bring anything up, it’s always just dry, so doing that it irritates it, it makes it inflamed, so for me it has to be a really good run, like a cardio, doing something that’s going to get stuff moving, and then if there is something there I’ll cough and if I’m coughing then I know that I need to do Physio, but that never happens.

I’ve tried every hobby going, dancing, karate, ju-jitsu, football, netball, I’ve done everything. Nothings ever stopped me, even skiing, I’ve even done diving. And I love doing diving. I was going to do my open water to 18 metres but then I got my PortaCath put in, and possibly there could be a small air bubble or something in it, and I don’t fancy compressing it and letting it explode at some point. So possibly when it comes out I’ll pick my diving back up, but, that’s the only thing that CF has stopped us doing, is doing my diving again. Because I went on holiday, I did my diving there. And then I came back, and then I had my port put in, a week after. It was booked in, and I didn’t think anything about the diving when I was away, and then when I went on holiday the next time I had my port in, and I was going to do it, and I just thought ‘Aah, I can’t, I don’t want to do it, I don’t think, not without asking, and when I did ask I was like ‘I didn’t think I could be. It’s because I always do get, like with, like a tiny air bubble or something there, that, I’d probably could do diving, but I’d feel edgy about it, I get terrible vertigo, if I’ve got no balance in my ears, so as I’m coming up, I haven’t got a clue as to where I am.

So there’s one thing that you can’t do.

Well I can when my port’s taken out. Hopefully they won’t replace it immediately. I’ve never had to use it for nearly three years now. It’s the only time it gets used was yesterday when I had it flushed, but they can’t take any, I don’t get any drawbacks or, they don’t take my blood from it, so it’s literally just getting flushed at the moment every month, and, antibiotics don’t go into it [laughs].

I was actually, I see someone, Professor [name], who I was referred to, from Doctor [name] who is my current consultant, and she specialises in diabetes but also people with CF, so she has a history of how to treat, and it was quite hard to start off with, it was basically, someone with diabetes eat more long acting sugars, so potatoes, pasta, things like that, and to try not to eat sweet things, so it was, I was, tracked the same way, but there was, it was kind of, no restriction on the amount. To take in more, more carbs, don’t stop eating the amount you have and don’t diet, just take more insulin to counteract this. That was the’

Okay. How long ago, do you think it took you to ‘

Quite a while. I’m still adjusting. I mean if I get a little bout of cold or any flu than I see my sugars go up higher and it is quite awkward, it’s a bit frustrating because you’ll just get it settled and you’ve got it all even where your blood sugars are alright, and then you’ll get an infection and its really hard to keep them down and get it right, because it just, I mean last week I’ve just finished exams and I haven’t slept much and I’ve been stressed so I’ve had a bit of a, a bit of a cough, and it’s been really hard to get it back, I’ve had to increase my insulin just to keep it at normal rate, but when I’m fine in the house alright I’ll probably take it back down.

How do you find, because you need to eat very regularly, when you have diabetes, do you manage to do that?

I tend not to eat in the morning, but later on in the day I do eat, so I, because its such a low dose that I’m on, I don’t tend to get hypos, things like that, it’s very rare.

What about your diet. Hows your diet?

Certain things, as I’ve grown I haven’t eaten. Diabetes I’m not supposed to eat Jellies, or Jam, my favourites, and I’m not much of a chocolate lover, but I love jellies and jam. I don’t eat jam anymore, I do eat jellies now and again, and that’s really bad, but I’m not bothered really. It’s only now and again. I don’t drink fizzy pop, I can’t drink pop because of the acid, anything that’s really high in acid I have to take more lansoprazole, or make sure I’ve taken it, oils, fats, carbonara, anything with double cream is a no, just because I don’t take Creon I just don’t digest it, and I’ll know if I’ve had anything like that, next day because I’ll just be home bound, can’t go anywhere. Or if I can keep it like that, it puts us off, I can’t eat, I’ll be feeling sick and, so I have, because I don’t take Creon I have to adapt my diet which is technically a lot more healthier because its got less fat in it, and it tends to be more, more carbohydrates or for my diabetes, on that side its good as well.

And the reason you don’t take Creon is because your weight is.

Fine.

‘it’s fine.

I’ve never had any problems, but the first nine months of my life; I’ve never had any problem putting on weight. As soon as they put me on Creon I was fine and then I’ve never had any problem where I had infections where I was losing it, so I’ve never, I’ve always been able to maintain it, as I say I don’t, if I ever get an infection where my weight plummets I’ll have no qualms about going back on.

I think probably when I was in between 14 and 17 I was a bit like ‘oh, sod it’ [laughs], ‘I’m going to do what I want’, and probably was a bit more detrimental that I should have been, and then it was like ‘Oh it’s not as bad as I thought. I think at the time I had people telling us, that you need to do this, you have to do this and you know, you’re not going to live as long as this, but then, as I came out of that like time, and I was like, well actually, I’m not as bad as I could be, I’m doing quite well, and this is what I want to actually do and go to university. I do eventually want to do a PhD and lecture at Uni, so, I want to be a ripe old age [laughs].

I think in a way everyone rebels at that age, it’s teenage, you have to do it. I think you find yourself at the same time, so you’ll find when you do get out of that stage, you have to go through it, because then you’ve done it, I’ll say, ‘I’ve been there, I’ve done that. And then you come out and you’re like, ‘right this is actually what I want to do and you do, you do need someone there that’s pushing you in the right direction, being an absolute nag, pain in the arse, you don’t want to do it, but someone that’s constantly pushing you in the right direction.

That’s usually the Mum?

Hard love. It wasn’t actually my Mum, it was more my Dad, and probably my healthcare professionals like my nurses, my doctors, kind of.

So in a way they ‘

I think they put up with it a lot. They put up with us being that way, but then got serious ‘right you need to stop doing this.

I mean around that age there is non-compliance with treatment.

Yeah, great problem.

I didn’t, there wasn’t any major times when I was unwell, until I got to the age of about 14 and I had a rebellious streak [laughs], as we all do, and from about 14 to 19 that’s when I started, I had a portacath put in and I started having I.V.s and it wasn’t so much that I had bad chest infections, it was more to prevent it getting to that stage, which is what my new doctor, Doctor [name]’s idea was, was to stop it before it got that bad. And since about 19 I haven’t had any, and I’m 21 now. So I’m doing alright.

Can you tell me more and in more details about your rebellious years?

Probably it was lack of care, lack of, I think it was because I hadn’t had any real problems with CF, I didn’t, it was probably denial that I had it, it didn’t affect us, so I didn’t take medication, I did think that I probably shouldn’t have, and it hit back [Laughs]. Really, that’s when I started getting chest infections.

What were you doing that you shouldn’t have been?

Probably drinking. Oh I was under age but that kind of, it does even now when I go out, I tend not to drink much, unless it’s a special occasion because it does dry us out and its makes us, the atmosphere as well, smoky atmospheres.

I think in a way everyone rebels at that age, it’s teenage, you have to do it. I think you find yourself at the same time, so you’ll find when you do get out of that stage, you have to go through it, because then you’ve done it, I’ll say, ‘I’ve been there, I’ve done that. And then you come out and you’re like, ‘right this is actually what I want to do and you do, you do need someone there that’s pushing you in the right direction, being an absolute nag, pain in the arse, you don’t want to do it, but someone that’s constantly pushing you in the right direction.

That’s usually the Mum?

Hard love. It wasn’t actually my Mum, it was more my Dad, and probably my, my healthcare professionals like my nurses, my doctors, kind of.

So in a way they ‘

I think they put up with it a lot. They put up with us being that way, but then got serious ‘right you need to stop doing this.

What else do you need to do in order to prevent infections?

I don’t think that I actually do much to prevent infection. I’m just being very lucky. I think. I think around Uni, Fresher’s week, I didn’t do that, because everyone gets Fresher’s Flu, colds. I tend to stay away from, if I know someone’s not very well I’ll stay away. Or, my family will say, ‘Ah, so and sos got this’ and I’ll say ‘alright, I’ll not come round’ [Laughs]. So I tend to stay away from anywhere that’s going to put this, and I’m always, it could be, say, obviously the British, 15 degrees, wow its hot, and I’ll be like in a jumper. Make sure that I’m not exposed too much to get any kind of infection.

How was it for you to get used to injections?

It was fine, but for someone that had getting rid of most of the medication that I take, and now I have to inject something all the time, oh, it’s all it’s like, just remembering for me, I mean it seems really daft, someone with CF saying I forget to take my tablets, but its like say you had a two week prescription for something, you forget its exactly the same. Just because I have CF, because it doesn’t affect me as much, if I’ve got a cold, or if I’ve got flu, then I don’t forget anything, because I’m aware of it, but something that you’re not aware of, my diabetes, the only time I’m aware of it is when I’m not well and I’m high and I’m tired, and I’ll be like I’m tired and I’ll take my blood and like oh, its 12 [laughs], that’s why, but that’s the only time I’m really aware of it, otherwise because I’m on my bike, I’m constantly keeping it down, so it’s ‘

You like your exercise.

It’s probably why I don’t have to take so much insulin, as, I mean a normal, the normal is for every kilo of your body weight is a unit. And I’m only taking five or six units, and I don’t weigh 5 kilos [laughs] so, might not; I’m taking next to nothing.

I think I have ups and downs where sometimes I’m really good, everything’s fine and when I do it I feel good for it, I feel better, there is a difference, then I got through times when oh, just can’t be bothered, and then I’ll go into a dip and then I’ll feel crap, and you say, yes you know why you feel crap. I’ll start taking, it is, it’s like a constant, sometimes it’s really good, sometimes it’s a bit naff, and then you pick yourself up. It’s never constant where it’s perfect all the way; it’s always up and down, for me.

What are the difficult things about managing your conditions?

I’d definitely say the insulin part of it. CF I’ve got no problem controlling, the diabetes is the hard one to control, homeostasis [laughs]. Very hard to control.

Why because ‘

Probably because I’m quite active and because I’m always exercising, like on my bike and things like that, it is hard to control. And eating at the right times, you’ve got to think of the exercise you do, when you’re eating, how much you take in, and everyday isn’t the same. You could be less active, you could be eating more, you could be eating less that day, but more active, and because you’re eating less but you’re more active, at some point you are going to have to eat more, or you’ll have to take less insulin, so the insulin levels always up and down, and its judging it, you never know, some days it’s like I mightn’t be doing this, then all of a sudden someone rings you up, oh we’re going to go out, we’re going to do this, and you haven’t, because you’re not prepared for it, you’ve got to think right I need to take this, I need this, I need that, and that’s the hard par

I’ve known people that’ve been very similar to me, possibly they’ve getting a chest infection and then six weeks and they’ve passed away and they’ve died. So I do know that it is, it’s, I think it’s the luck of the draw sometimes and the infection, you have to catch it early and’

So the infection is something that you need to look for?

Yeah you have to be, I think as soon as you get something, go and do something about it. But then you can’t always predict if the treatment is going to work.

I don’t actually dwell on it. I just do what I want to be doing. I mean, I think probably when I was in between 14 and 17 I was a bit like ‘oh, sod it’ [laughs], ‘I’m going to do what I want’, and probably was a bit more detrimental that I should have been, and then it was like ‘Oh it’s not as bad as I thought. I think at the time I had people telling us, that you need to do this, you have to do this and you know, you’re not going to live as long as this, but then, as I came out of that like time, and I was like, well actually, I’m not as bad as I could be, I’m doing quite well, and this is what I want to actually do and go to university. I do eventually want to do a PhD and lecture at Uni, so, I want to be a ripe old age [laughs].

What motivates you to look after your conditions?

I want to be a lecturer [Laughs].

You want to be a lecturer?

Yeah, I want to do, I want to travel around and do things or’

So you want to keep healthy?

Yeah, and I know for what I want to do that it’s going to take a time, because I’ve got to finish my degree, and then it’s a three year PhD, so to do that I need to be healthy.

It is kind of, you go through that teenage stage and it is awkward, but when you come out of it and you’ve decided what you want to do with your life it’s getting, knowing where you want to go, and just, and doing it. And not letting CF stop you. Basically, just going out and doing it. It does have its downturns where it will affect you but, you’ve got to try and not get negative about it, just keep positive.

What would help you to keep positive?

People I know really, people I know that kind of inspiring us, saying, ‘Ah, he’ll being saying this, have you done that, and do you want to do this. I think it’s my own personal drive that I wanted to do this, so I’ve got on with it, and I’ve done it.

And people you know like whom?

Doctors, nurses, my family, my friends, things like that. People saying that I’m helping them, like, ‘Wow, the worst words in the world, ‘You’re so brave’, you just say, ‘Oh shut up [Laughs]. I am not brave I just want to live a normal life really, just get on with it. Brave is a horrible word, never use it.