From the university staff, when you are going through a bad patch and feel very fatigued?

They have been amazing about it as well. I just go to the doctor and ask for a letter saying I am feeling ill and I give that to my tutor so they have got it on record. It is really important so that if it was to come to any work that needed to be handed in and I hadn’t been able to do it because I had been ill. If I have notified them before then they are prepared for it. And my university they have been brilliant, absolutely brilliant about it. I don’t really see them that much because I only have three lectures a week or something. In fact they have been really good about it because very confusingly I had to retake half the year last year because I had been ill and missed it, but that wasn’t a problem they got it sorted out. It was my tutor who suggest it to me that and I hadn’t even thought about it because I thought for a second I would have to quit university and I didn’t really want to do that. But they have been really understanding about it.

And you know, there is a – in the Union there is this department called the Access Department which sorts out disabled students and so I went to see them in the first year and they got me a Disabled Students Allowance which helped out with various things as I mentioned before. And that has been really helpful as well. So that is ideal. I can’t really fault them. They have been fine. It is just – I just at some points haven’t been very well but they have done their best to accommodate that, but you know there are some things that they can’t – they can’t make me better but they can help as much as possible.

When you wrote your personal statement to come to university you said you wrote something about your condition or not?

I think I, yes I think I must have done. Again my memory fails me. But I think what I had wrote was that I had had ME for four years then, four years may be. I had it but I had got good GCSE results. I am going to get good A-level results. I had been predicted this, this and this, so although I am ill it hasn’t you know it won’t affect me academically because I am sure I told them’ I am quite positive I told them because I didn’t want to not tell them because that would be a bit dishonest but I wanted to show them that it didn’t affect me, it did affect me but I would be able to achieve to their academic standards because I had got these good A-levels and I had got good GCSEs. I think also it shows a good determination, and a good strength of character to be able to be ill with something that is pretty debilitating but also be able to do exams and to want to come to university and stuff. And I wasn’t a problem. Yes.

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.

If you go to university this is what I did, then you get assessed first of all. And I mean this isn’t when you start university but a few months before, you know, I mean you can get this through your college probably or you can go on the website or something. Basically you get assessed for any extra support you might need at university and basically there is different types of funding, but it is all basically disabled students allowance, but within, yes within that, there is three different types of funding for different things you might need and this is all through you know, if you get to university you get a student loan or there is a section on there that you can tick for Disabled Students Allowance (DSA). So obviously if you tick that box they will send you the stuff. And you can apply for it and you will get assigned like to your local assessment centre again or to your Local Education Authority, which in my case was [city]. Anyway you get assessed and from my experiences I got. This is all assessed and I got before I started university and to complete my course you get a – I got a laptop computer. So if it was off I could still continue with my work you know. So I got that and it was obviously great, I got all the software needed to do my course. Any specialist software. I specialised in radio so you need software to edit. So I got that as well on the laptop. So when I was in hospital or I would off and couldn’t go to university, I could at least do it at home. Also I couldn’t drive back then, so I got a grant to get the taxi to and from university. So I got that all paid for. You get so much in instalments every term. But basically, you know, if you can’t drive and you can’t get there, you can get your transport funded. So obviously you are going to be able to get there. So it is obviously fantastic. And then once I was there I had – you can have people to help you in the lectures, like to write notes and to help you in the library, to help you with meals. You can have like a support worker. And that all gets funded through the same thing. So those are the three different areas. So you have got transport, you have got equipment costs and you have got like a support worker. So there is three different areas of the disabled students allowance or the DSA and I got all three of those. You get a certain amount each year, but if your money runs out then you can’t have any more obviously. It is not like a bottomless pit. But you know the money is there and you get assessed for what you need. Like the support worker was with me for 30 hours a week. So obviously if I exceeded that, you can’t exceed that. So I had the 30 hours from that a week and I had the laptop to which is at home and I had the transport provided five days a week throughout the course. Which was you know from here to university. It worked out ’17 per journey. That is ’34 a day. So that was all paid for. Which obviously is a big cost. And that was obviously great.

So basically the help is there, you just have to be assessed and everyone will get different, like if you have got a physical condition you can get dyslexic if you, you know, you will get some sort of help. Like I got extra time in exams, you know, to write or you can have a writer for you in the exam. That was all through the DSA and if you ever need anything different you just got to the university, to the disability section, and they have like a disability advisor, disability student advisor, you could got to him and he would sort anything out you needed or if you needed any extra hours if you needed anything extra then he would sort that out for you, for me.

Yes, I was, my scolio, I went to sixth form and I went to university. So my scoliosis, it didn’t really affect sixth form that much, because that’s when it was really starting to progress. I had a few aches and pains and I used to fidget a lot in class. And I used to be quite noisy because I was constantly fidgeting. And the teachers used to, shot me like dirty looks. But at university it did create a problem. Because the lectures, they were like two, three hours long. And sitting that long, I just couldn’t do it. So they had an Access Unit. It was for people, sorry, I’ve lost my words here, I can’t remember what the abbreviation is it, it’s for. But it’s an, it’s an Access Unit and they help people in university. And I wasn’t, I didn’t, because I didn’t really see myself as having like a disability. I just thought, ‘Oh, I was just Elizabeth and I had a bit of scoliosis. And they encouraged me to apply for Disabled Students’ Allowance. And I was quite a bit put off, because I thought, ‘Disabled? I’m not in a wheelchair. You know, all right, I can’t walk sometimes, but I can walk most of the times. But I think it was coming, I think applying for the Disabled Students’ Allowance, it was the best thing I ever did. Because I got specialist seating. I got a seat insert that I could sit in my lectures. And the lecturers, they were a lot more understanding. I used to get up and take a break. They was fine. They provided a dictaphone as well. So if I had to pop out for a few minutes to have a stretch, they used to record the lectures. So that was no problem. I used to get extra exam time. So I could get up and have a stretch and it wouldn’t impact on my work. Which was, it was just such a relief. Because I did my first set of exams when I was there with none of the extra time. And I used to come out, I used to be really in a lot of pain and it used to take me about two or three days to get over it. And my university, they also paid for me to have a computer at home. And they paid for specialist seating at home, so I could work comfortably. So I didn’t have to worry about being in the computer room. So I didn’t have to worry about having to get up and leave my work and coming back to it. So I could do it all indoors. And they used to pay for photocopying allowance, so I didn’t have to take the whole book home. And I used to get an Internet allowance, so I could access on, the journals online. So I didn’t have to go into the library at university. But they was just brilliant. I couldn’t have asked for more really.

And you had this allowance for the three years?

Yes, for the three years. You get the computer and you can keep it. It’s yours for ever. Because they said it’s more hassle to come back and pick it up and clean it and strip it, and by the time the three years are up it’s not a new computer.

And how do you apply? Do you apply through the university?

Yes. They, they did all the forms for me. All I needed was a letter from my doctor. And I gave it to the Access Unit and they took it from there really. I had an assessment. I had a consultant, I think he was something to do with Occupational Health, I wasn’t too sure. He came in and he spoke through, we talked through about my everyday life really, the problems I’m having. And he, he made up recommendations and they sent it to my local authority. And they, they delivered all the equipment to my house. So it was, it was really easy. It was an easy process. I don’t know why I didn’t do it before. I just think I was so big-headed. I just didn’t want to accept the help, because I was so used to coping and being quite independent. And I think I felt such a stigma attached to it, being Disabled Students’ Allowance as well. But it, the best thing I’ve ever done. I’d recommend it to anyon

After about six weeks of partying during my first few weeks of university I got quite run down. It was the first, being at uni was the first time I’d ever lived independently. It was the first time really I’d have to do everything for myself. And when I was at home like it was a kind of a gradual process, kind of me getting my independence with my treatment. It wasn’t like one day my parents said to me, ‘Right from now on you’re going to do everything yourself. It became more like, of a balance like. I’d start to do, get my nebulizer ready myself from when I. Not sure how old I was but in. I’d just like start to do, you know, my nebulizer myself and start to get my own tablets out instead of my mum putting them me on the table. And it gradually throughout the years I would just start to take on more and more of treatment. And at one point, like before I left for uni I think the only thing that my parents would actually do for me is like wash my nebulizer’s, mouthpieces. That’s the only thing they’d actually do for me.

One of the things I find, like I absolutely love being at university and I love the student life. I’m really happy in my house with my friends and I’m settled on my course now although I find it quite difficult but I suppose everyone finds their course difficult. But overall I’m like really happy with the uni life. I just sometimes find it really hard to get a balance between my social life, between my medication and like managing CF. Between my diet and making sure that I eat a good high calorie diet to keep my energy levels up and between my studying. And I just find all of it sometimes hard to balance. And just as I think I’ve got it all balanced and I think everything’s going really well something will happen and then I’ll be like, ‘Oh gosh’ like and I have to reassess everything. And I kind of learnt through what I can and can’t do and I’ve learnt through you know, the experience of it all. But I still feel like, even though I’ve experienced, even though I feel like I know what I can and can’t do I still feel like something, sometimes things happen and I think that I haven’t really got the right balance but it can be quite difficult. But overall like I do enjoy uni so it’s worth it [laugh]. I hope.

And I think that people, like if I had to give advice to anyone going to university ’cause, I would have loved someone to have said to me when I go to university. You know, you can do this, you can’t do that, you can do this, you can’t do that. If you do this this will happen. If you do that that’ll happen. So as long as you do none of them things you’ll be ok. But I honestly think that the only way to learn is to learn from experience. So if you’re going to start going to university, if you’re going to a, a course or something or you’re going to go to uni and you want to know like, what’s the best way to go about it because you want to make, remain in as best health condition as possible. I would honestly say you can only learn your own boundaries and you’ll learn that through experience. Like I know now that I can’t have five nights out a week staying out ’til 4 am, getting up and going on a run before lectures and not eating a proper diet. But obviously each person is different and they’ll all learn through experience.

Can you tell me about more about how you were as a teenager? Was this positive you, there all the time, or has it gradually developed?

Well I think when I was a teenager obviously I missed a lot of time off school and so you have to be a strong person to get over that, to keep going on and to do the work. To get my GCSEs, to get my A-levels but I wasn’t really confident. Do you know what I mean. I mean I wouldn’t go out much with my friends during that period. I mean I was quite shy I guess. But I went to university. I did my first year at university and then at the end I finished there and like the May, June and I went to America during the summer. So I had actually done my first year at university. I went to America and then I was going to go into my second year but obviously I couldn’t because I was in hospital. So I missed that year out but I would say the turning point, you know, was I don’t know if is like a wake up call, but it is a changing experience. It makes you stronger and you think blimey that was close and you are more positive. I think then, you know, I mean my last two year’s at university, I was you know so confident. Just a changed person, you know what I mean. I wouldn’t be able to do this before, you know, university. I would have said I am not talking to a camera. I don’t want to do it. But now I will do anything. Do you know what I mean. I am not scared about looking for a job now. You know, personally if you had said to me, you go to university and get a good qualification I would have laughed. But I think university as well has changed that. I mean it allows you to be more confident, more outgoing, you can meet loads of people and it just brings you out I guess.

I’m interested to know how did you sort of react at university? Compared to when you were a teenager at school?

When I was a teenager I mean I had friends but I wouldn’t go out so much, you know, so they was only my friends really in school or college. I didn’t really see anybody outside of those. So I guess, you know, you can call them friends. You know, you can’t call them friends really. You know that was probably down to me. I was quite shy and you know I wouldn’t get involved with things when I was at university, the first year at university, I met some fantastic people which I still know today and because I had to miss the year I lost contact with those people you know. So they carried on at university while I was in hospital you know. So I lost contact with them a little bit. But people’ I have met some new friends, because I went back. The friends – I mean I always say that actually the American experience, that year out, was a blessing in disguise because I met all my friends I have got now and you know, they are fantastic friends. But if I hadn’t have had that year out I wouldn’t have met them. So in a way even though that happened you know there are lots of positives that come out. But now my friends, you know, just treat me as anybody else, you know. They are fantastic in that respect. And you know, they are not just friends for now, but friends for life, do you know what I mean.

Yeah, well actually, since going to university I’ve met, not necessarily to say friends with but I’ve at least met people with other health conditions.

That I didn’t really meet at school. Or at least you didn’t know about it. But I think because people were away from home and they were having to look after themselves and their condition, I don’t know, it came out into the open a little bit, or it seemed to. So that was, you know, that was quite an interesting discovery.

And I think by the time people are at university, they’re much more just hopefully, more understanding about the world anyway. So they don’t, you know, you don’t get people judging you. Or you know, saying anything inappropriate. And actually people, people to me have been more supportive. About, you know, because, you know, when I’m stressed my skin gets worse so they know that there’s something going wrong [laughs] because I can’t hide it [laughs].

Because there is a lot of wild partying going on ‘

Yes.

There can be yes. I think most people get it out their system in the first year. But I seem to catching it up now, I’ve got twelve weeks left.

I know if it’s a purposeful distraction I’m not sure.

Okay.

But yes there is a lot ‘ I don’t know I think it differs in that there’s less of a routine you know, being at school or having a full-time job. So for me I just have to make sure that you know, I still have time to look after my skin and make sure that I’m eating well and things because you know every’ everything else is kind of here, there and everywhere’ and all different things happening so.

So by that time it had been going on for about a year and I was getting really upset because I still really wanted to finish my degree. And so we went to see the university and they said that there was a part-time course that I could do where I only had to go for two evenings a week. And so I thought, sort of thought about it and I thought well it’s not going to be the life that I wanted to have at university but, you know, I really wanted to get my degree so I gave it a go. And that was brilliant because the people that were on the course were all mature students so they were all like, they treated me like their granddaughters most of them. And lots of them were in their 60s or 70s and wanted to just to it, do the course for their own, you know, interest really. But they all had like, they all had so much life experience that they didn’t really care that I was different. And they didn’t really care that, you know, I’d get really tired and probably need to go and have a rest in the middle of the class or whatever. They weren’t bothered about that because they all had people in their lives whod, you know, had different experiences. So they, they weren’t like, like teenagers who judge you and sort of think, ‘Oh you’re different why can’t you do things?’ They were just like, oh, you know, that’s just the way I was. So that really gave me loads of confidence. And it took me five years to get the degree in the end but I did it [laugh].
At the moment I’ve just finished a Masters degree which was something I really, really badly wanted to do. And I actually wrote to the university when I started the course. On my application I explained to them about having M.E. and I actually sent them some leaflets from AIM that explained what M.E. is and explained the Functional Ability Scale. And I sort of basically did my whole application based on the fact that I now believe that I can manage my day-day activities. And that you know, I’ve learnt from that how to manage doing university work as well. And they were really impressed with that and they came back to me. And they said that it was really nice just to see somebody whod made something, something negative actually become something that can basically go on your CV or could be a work skill. Because they said that I’d shown that because I’d learnt to manage my daily life, you know, I would be able to, to manage university work.
And basically doing my MA was a case of really being quite strict with myself and planning. Whenever I’d got an essay coming up. Ok so that might involve a few late nights [laugh]. So you know, how am I going to plan for that and when are my lectures? So how am I going to make sure that I get rest times the day before? How am I going to make sure that, you know, I get the work in on time without making M.E. an excuse? Because I really, really hate to be the sort of person who has to go and say, ‘Oh I didn’t do this because of my M.E. Because then I always feel like it’s won. So I always want to be able to, to say, ‘Yeah I got my work in on time and M.E. wasn’t a factor in that.
So, you know, I just wanted to be really strict with myself and I wanted to prove that I could do it as well. You know, I saw the whole thing as an exercise in proving that I can be in control of this and that, you know, I can get my work in on time and that I don’t have to go and apologise because I’ve failed it again, you know. But it was very scary because going back to uni and committing. The course was for a year. So committing to a year’s course having basically had to pull out of the fulltime undergraduate course was really scary. Because I just thought what if this happens again? You know, what if I’m pushing myself too much and I get ill and I have to fall out again.