You would’ve wanted to know [about SUDEP from the neurologist]?

Yeah I would and I know there’s a number of other people who I’ve met through these sorts of things [volunteer scheme] who also feel the same but a lot of parents feel that they don’t want their, they wouldn’t want their children knowing about it so it’s kind of that what age do you sort of approach the subject so.

Now that you have all the information, all the facts about SUDEP does that worry you, scare you?

Not really I don’t think I’m that high risk ‘cos obviously my seizures are well controlled I make sure I take my medication regularly. It did make me think more about that because to start with I was kind of taking it in the morning and in the evening and that varied day to day, so now I’m a lot more, I take it at ten and ten. And I make sure I do take it and ten and ten but that also helps with my sleepiness as well so [laughs] but I have become much more, sort of set in the times that I take my medication since reading that. So I think that’s one thing ‘cos I think a lot of people do sort of forget don’t really think twice about you know of taking it four or five hours late if they forget so I try and be a lot more careful since reading that, yeah.

Yeah, so in that sense there was really a good benefit from knowing about some of the things that you can do?

Yeah, yeah.

What about thinking of the start of the Uni? What about the sort of the social life and the whole student life that you must have been really looking forward to?

Yeah, it was difficult because obviously one of the things is, a sleep you shouldn’t stay out late and I found it quite difficult anyway because of my medication makes me sleepy in the evening so I tended not to go out in the evenings so I’d rather go out in the daytime and do things but obviously that’s not really the student culture it tends to be sort of go out late and stay out late, so I did find that quite difficult. But my boyfriend actually is he’s actually the same as me he likes to go out and do things in the daytime rather than go out late ‘cos he works as well as Uni so he’s, kind of on the same timeframe [laughs] as me I guess. So we do quite a lot of things and just go out in the daytime and my housemate she’s actually, likes to [laughs] sleep as well, so we can, well I mean I think I’ve, the friends I have made are quite useful ‘cos they, they are all sort of the same people as me and they don’t like to go out late and stay out late and so we do do other things so. I think it meant that I’m probably made better friends because they’ll support me more and they’re not just gonna sort of leave me out. But it was hard because I was looking forward to going out and that sort of life but I thing is made me more sensible. And that I don’t drink whereas a lot of people do so and I’m glad that I don’t because I can see all the stupid things that other people do and so, yeah I think it’s, I think it’s actually been good in that respect.

I didn’t really make many friends because it was difficult and my flat wasn’t, people I was living with weren’t the most understanding people. I don’t think I’d have got on with them very well even if this hadn’t happened. But a lot of people on my course and people in my actual house, ‘cos we had flats in the house, they were good and there were always people looking out for me but it was difficult because the people I actually lived with weren’t very helpful really so. But I made friends, I did make a few friends and they’re still my friends now and they’re really stronger friends than a lot of other people I (met) at Uni. But it did make it quite difficult especially starting a new course and the studying, it meant that a lot of my background study was sort of the basis of the rest of the course was from those few weeks and months and, I sort of didn’t really remember [laughs] much about it so it made the rest of it quite difficult.

So that was difficult but I also had memory problems sort of to begin with but I actually went to the Dean of Students at the Uni because on placement it was brought up, quite a lot on my placements by my supervisors that I had memory problems and that I needed to address them. and the Dean of Students were really supportive and gave me a lot of tactics to sort of address it and I feel now that my memory isn’t really that big a problem to me. And that’s probably a mixture of the fact that I’ve had help and also the stress has sort of really been removed as time goes on so. But at the time that was difficult because and it meant I couldn’t remember anything and so, it was difficult. But in the second year I kind of picked it up and the second and third years have been a bit easier so, but still, missing that sort of basis makes it a bit more difficult to build upon but I’ve slowly built it up and my housemates have been really good because they’ve sort of given me the support and helped me to pick it up and if I’ve got a problem they’ll go over it with me. So yeah that’s been, it’s been alright.

Well my first seizure was just before I went to University it was in the summer and I was actually running I was training for Tetrathlon nationals so I can’t really remember much about it. I was on my own and I’d just been running and it that was just afterwards and I was walking back to where I, I actually have horses where I keep them, and I fell over and ended up in a hawthorn bush, and I woke up and could just see someone from the yard was just standing there and I managed to stumble back and got home and my mum’s like, ‘What’s gone on, what’s wrong with you? Are you, are you okay?’ And I didn’t really know what had happened so and after about half an hour I was sort of a bit better so, and then I decided I should go to the doctor’s really but it wasn’t like, ”cos I thought I’d just fainted because that’s what I just sort of just blacked out and fainted but so I went to the doctor’s anyway to find out what it was and he said, ‘Oh it’s probably a faint you’ll be fine’, they did actually x-ray my heart and sort of to see if there was anything obviously wrong, obviously they won’t diagnose epilepsy anyway on the first seizure so, so yeah I got on with it and I did my nationals and I didn’t really think about it again, and when I went to University it kind of came up that I’d ended up in a hawthorn bush after running and everyone was just laughing about it. Anyway I joined Athletics Club and about a month after I started Uni I had another one, and that was actually at Athletics Club so there were a lot of people around and I was running with one of my friends from Uni and she, so she saw the whole thing happen and they got the ambulance and I went in the ambulance wearing a lot of other people’s clothes [laughs] and got into the hospital and I can’t really remember much about being in hospital, anything like that.

I think the biggest thing was they said I couldn’t drive anymore that was the biggest thing because that was sort of my freedom at home. It’s not that easy to get around places here so I just felt completely, because I’ve been driving for two and a half years then, so I just felt completely lost when I couldn’t drive. So yeah I was quite upset for a while.

I was really scared [when she got her driving licence back] and thought, “How will I ever remember [laughs] how to do it”, but actually it’s just like riding a bike you can just drive again. But I definitely did for the first few months I was just like, well I don’t feel I should be driving [laughs]. Because it had been so long since I didn’t I kind of was, it was a bit hard to believe that I could just get in the car and drive again so. But yeah it was nice, I could go and do things. ‘Cos I keep my horses about half an hour and there’s no buses and no trains I was always relying on my mum to take me there and bring me back. ‘Cos she works there I used to have to go with her to work and then spend the whole day and work with her and then come back again so it was quite difficult. So yeah getting my driving licence back meant that I was sort of free to do what I wanted.

Before I went to university and I did basketball and tetrathlon which is running, swimming, shooting and ridin. I ride and I skied and I just did loads of sport I sort of ran at school. And I wasn’t, you know, really amazing sort of level of sport but I enjoyed and my friends were all sporty and that sort of thing. And when I went to Uni I carried that on and I was in the Athletics Club and the Basketball Club. But after I’d had two [seizures] running it kind of knocked me back I didn’t really wanna push myself running because obviously I’m relating to two of them, even though my neurologist actually said it’s not a trigger for epilepsy, it’s unlikely to have anything to do with it but I kind of still related it. And then when I had the fourth one running that was sort of even more and since then I have run a bit, but I wouldn’t say I run, I don’t do sport like I used to do it. But I am kind of bringing it in a bit more now, my boyfriend’s starting to run with me. And people have been really good and even the girl who I ran with who I had my second seizure with she’s been offering to run with me if I want to do it. People do offer to run with me but there’s kind of like a little nagging in the back of my brain. But then I’ve just been to talk to my neurologist about it not long ago and he said to be sensible and just build it up slowly so and just I know that I won’t run when I’m ill or when I’m tired or when I’m really stressed and so just to be more sensible about the whole thing. But yeah I’ve always wanted to run the marathon so, hopefully one day I will get back to it.

It’s a scheme and you apply for it and they sort of, they look for to try and get a range of people sort of covering all ages and all experiences. And you do a couple of actual training days on communication and presentation skills and that sort of thing, and then you do a distance learning course which is learning you’ve got different modules covering different areas of epilepsy so that you have a deeper knowledge of epilepsy and then once you’ve actually passed all the sections you go out and then working more on the presentation side, so going out and giving presentations to schools, employers, nursing homes that sort of thing, and then occasionally you’ll go out and see someone, sort of you might go to a cafs somewhere and meet someone in a public place, it’s always a one-off and you’re not a counsellor you’re just going to listen to them tell their stories and you give advice and contacts so you’re going kinda, it’s more giving them support rather than anything you’re not doing any sort of, counseling and knowing your boundaries as well that’s one big thing is knowing where you can stop and have to say, ‘I can’t help you with that you need to, but here’s someone who can’, and it’s kind of not leaving them but they’re kind of rollicking at the educational side I think because they’ve got such a large, they’ve got a lot of people trying to get in touch with them to do it so they’re trying to sort of, like enlarge that area so yeah.

And why is this something you want to do?

I think because Epilepsy Action did give me a lot of, I found a lot support on their website, and I went to a, one of their local conferences and it was really interesting and the last person to speak was actually a volunteer and his story was really similar to mine and it kind of, and he had then sort of got to this stage that I was that and decided he wanted to give something back and he’d gone and done this scheme and so after that I kinda went home, read a bit about it and applied and, I got on the course so it was kind of that person who really sort of inspired me to do it.

I went to University and I did basketball and tetrathlon which is running, swimming, shooting and riding and I ride and I skied and I just did loads of sport I sort of ran at school. And I wasn’t, you know, really amazing sort of level of sport but I enjoyed and my friends were all sporty and that sort of thing and when I went to Uni I carried that on and I was in the Athletics Club and the Basketball Club. But, after I’d had two running it kind of knocked me back I didn’t really wanna push myself running because obviously I’m relating to two of the two even though my neurologist actually said it’s unlikely that, it’s not a trigger for epilepsy, it’s unlikely to have anything to do with it but I kind of still related it and then when I had the fourth one running that was sort of even more and since then I have run a bit, but I wouldn’t say I run, I don’t do at sport like I used to do it. But I am kind of, bringing it, in a bit more now, my boyfriend’s starting to run with me so. And people have been really good and even the girl who I ran with who I had my second seizure with she’s been offering to run with me if I want to, do it so she’s been. People do run offer to run with me but there’s kind of like a little nagging in the back of my brain that hears. But then I’ve just been to talk to my neurologist about it not long ago and he said to be sensible and just build it up slowly so and just I know that I won’t run when I’m ill or when I’m tired or when I’m really stressed and so just to be more sensible about the whole thing. But yeah I would, I’ve always wanted to run the marathon so, hopefully one day I will get back to it.