When they told me I had epilepsy, I blanked that and I started crying because I couldn’t drive. I drove a moped, which I love mopeds. I’ve been brought up with bikes all my life and I’ve had one since I was 16. When they said that I’d just bought a brand new bike two weeks before I was diagnosed, and they said, ‘Oh you know you’ll have to stop driving. If you don’t tell the DVLA, we will. So I had to stop that day, I couldn’t even get one last ride out of it and I was absolutely distraught, I didn’t care about the epilepsy, I just wanted to drive my bike. Because that was my way of like getting away from things ‘cos I can’t drive a car, I could just go anywhere on my bike and get away from everything. Now if I want to go out somewhere, I can’t really go that many places, I can’t get away, not as quickly as I could on my bike and just go.

And how do you get around that now?

I can’t really. If I need to go out I’ll phone my friends, say, ‘Oh do you want to go for a drive, I need to get out’, or I’ll just go for a walk and say, ‘I’m just going out for a minute. I’ll go to the shop or something, and just go for a walk to the park and have a sit on the swing.

And how does that affect you that you have to rely on other people?

Yeah, that’s quite annoying because I’m a really independent person, really. Like before all this like I used to hate people like, “Oh, I’ll give you a lift”, I’d be like, “No, I’ll go on my bike.” Or I’ll go here, I’ll meet you there on my own, I’m fine going places on my own, but now, I do rely on people quite a lot, like I’m never really on my own. If I need to get somewhere I have to like phone someone and like ask for them to give me a lift which I hate doing, I feel like they might think that I’m using them. If I say to them, “Oh, I’m really sorry, I don’t want you to feel like I’m using you,” they’ll say, “No, it’s totally fine, because we understand that you can’t get around without us anyway.” Otherwise I’d be locked in my room [laughs] all the time.

Does it annoy you still, even though they understand?

Yeah. I hate depending on other people. I really hate it.

Were you like that before you found out you had epilepsy as well?

What, depending on people?

No, happy just doing your own stuff?

Yeah, yeah. I prefer doing my own stuff, my own thing, on my own. But now, like even if I want to go shopping or something I need to get, like I can get buses and stuff, but I hate public transport [laughs] I’d prefer to be like on my own, driving. ‘Cos it’s so free.

When I turned 17 straight away able to drive, legal age for driving. I knew I couldn’t drive straight away then because I’d had a seizure not lot before. And then, going on 50 weeks clear, thinking that I’ll apply for my license. I thought, just around the corner, I just had two weeks to go and I can start driving and then a pretty serious situation happened, ended having a seizure and it did upset me. Then I had to wait another year. But now time is going on. Two more weeks to go, fingers crossed, as long as I take my medication and things like that. Not let things get on top of me, try not to get too stressed out. And just think about what caused them in past. Like stress was main one so I’ve got work and I’ve taken it easy, and make sure me tablets are taken on time. And touch wood me license will come through the door one day soon.

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.

I did give up my driving licence. I’ve been fit-free for a year now so I’ve got it back, but while it was with the DVLA I actually wrote to my local council and got a freedom pass because I needed to get [son’s name] to nursery and stuff. I needed to get about basically and because they’d taken my driving licence I didn’t have the means to go out to get about, and two pound a pop to get on a bus, and even more for trains, on trams or whatever. It was too expensive for me and I don’t have a job, I’m not earning any money so it was like, getting a bit expensive. So I applied to my local council and they gave me a freedom pass which is like little passes what, over 60s get and some other people with health problems. So I’m glad I’ve got that, so I can get on the buses and trains and stuff for free. Even though I’ve got my licence back I don’t really like driving, it’s just that fear of if anything was to happen, and I’ve got my son in the car it, it just scares me so much. So I don’t really drive that often. But that did affect me when I had to give up my licence it was really, I just felt lost without my car. But then I knew that it was important to do that, I had to do that, ‘cos it could be dangerous not only for me and my son, everyone else on the road, pedestrians and other road users. Like it made me think and I don’t mind getting on the bus especially in the summer like it’s not too bad the weather at the moment, I don’t mind jumping on buses.

The decision of going abroad was never mine to take, it was part of my degree. Where I study you have to do a year abroad, I’d already been out there ‘cos like I mentioned earlier, I went to a language school for a month in Berlin, because my dad had taught a girl who had done a similar thing. And then later that year I went back out to work on this farm, and then, I went back out to work again the following summer, I got sort of an internship in some geological firm. And, you know dated a German girl for the time I was out there. I think how it affected me I learnt in those sort of areas rather, I was really not worried about going to Germany with the university because I’d already experienced it. As it was when I went to Germany this time the medication went haywire, so in that sense it was different. But in making the choice, I didn’t feel that it was any different for me going to a university in England or me going to Africa. What it is, you’re away from home, made me feel slightly more lonely at time because that wasn’t something that had ever really been affected by my epilepsy. The only problems I had, well the times I went out before I was able to take enough medication with me.

What about the experience of going to the neurologist in Germany, what was that like?

Luckily my German was good enough to talk to him about what I wanted to do. When he wanted to put me, because of the brands as well though, it’s quite hard and I went to the doctor the other day just to check that the English medicine I’d got, that I’d picked up in England, was the same as the one he’d been giving me. I was fairly sure it was but, the design was slightly different and the brands were different, and I didn’t know if I [laughs] was taking the same stuff so I went to check. We managed to get through what was happening and he was fairly’ to be honest with you, he was a rarity ‘cos most of the doctors will speak fluent English in Germany. Like I remember when I’d had, when I’d been running and I fell over and the ambulance got called, the guy who came to me, one of the guys came to check up on me and you could tell he was desperate to practise his English. Now he was a proper, really high up, he was their neurologist at that University hospital and he came to me to try and persuade me to start switching drugs with him and I turned him down at that point because I was sure things were gonna get sorted. Eventually I ended up seeing a different neurologist but he came to practise his English with me, his English was so good. Generally in a country like Germany you don’t have problems to do with not understanding things or. And like it, like I say Germany was really efficient in what they did there.

I take my tablets with me, I do always make sure like the first thing I think about is getting my E111 thing that is now a card, but I don’t know what it’s called now, because if something happened you know. Travel insurance just always make sure the medical, just read through the medical bit make sure it’s alright, just in case. ‘Cos even if you just have a fit, and they take you into hospital, then that could cost so much money, that you know, it just does make sense to just make sure, so I just check the cover of that is really good. I’m also not wearing it today but normally I wear a bracelet that’s, it’s from a website I can’t remember what it’s called now. It’s a charity and it’s got sort of the medical symbol on the front, and then on the back it says like I’ve got epilepsy and I’m on medication, also says I’m an organ donor. I normally have that and a card in my purse and that just so if I was in another country and something happened and nobody knew who I was and you know nothing, then at least I’d have that.

I haven’t actually been abroad on holiday, or very far for that matter on a holiday. That sounds kind of weird as a 21-year-old saying this, but, without my parents because I know I think about them a great deal with this, it seems to be that it affects them emotionally a lot more than it affects me. So whenever I’m thinking about should I go on holiday, should I go out, I mean I could never go to somewhere like Ibiza or something like that. I even had a chance to go with my university friends down to Cornwall, and I though I was like, ‘Oh yeah, great, sure I’ll do that. But then they said well you know we’d really worry about you, you know, we’re not comfortable with this. I sort of said, it was sort of a mix between an agreement and sort of a, ‘Yeah, okay fair enough,’ sort of thing. That’s a good point I don’t want to have to worry you, and what if something did happen down there? They don’t really know me as well as some of my other friends.

So it affects holidays. I think is the main thing I would raise there and I’ve got to think about my epilepsy and who knows about my epilepsy and who would do the right thing by it. I mean a lot of people would just kind of panic and whenever you’re out and you have an epileptic a fit, especially in a shop ‘cos they’re obviously legally liable, they always call an ambulance. You can say, ‘I don’t need an ambulance”, ‘I’m sorry, we have to call an ambulance, we’re obligated to you know. I mean, like that kind of happens I suppose, so it does affect that. I mean I know a load of friends who are like, ‘Oh let the four of us go off and go to wherever’, Magaluf, Portugal, Spain, France whatever, and I just haven’t. It’s just different I suppose I mean there’s plenty of people who do that and they don’t have these sort of conditions to deal with, so I don’t, I just live a different life. There’s nothing wrong with being different. You just adapt to it.

With regard to travelling, I can’t, I wouldn’t really feel confident doing long journeys on my own. Like with the forthcoming trip of going to Prague that’s fine, because it’s only a short distance. But as I said before one of my friends is working in Japan and he sort of said, ‘Oh you know, you’ll have to come out and visit us. Which would be great but there’s no way that I would go on my own. I would kind of be tied to the fact that, obviously there’s a lot of my friends that wanna go, which is fine, but I’m kind of tied to the fact that I’m only gonna go if my friends are going cause there’s no way that I feel confident going on my own because I know for a fact that long haul flights trigger my epilepsy. So that’s a bit of a pain because it would be fabulous to jet off you know on my own, and say right I’ll go and see my friend cause I know that none of these people are gonna bother saving the money, and you know I know they’ll never do it, they’ll all go out and drink it away. But I just wouldn’t feel confident doing it, I couldn’t. So that affects it but then travelling, long haul flights is not something that you do every year, so it’s like once every, I dunno, once every ten years I’d think for me I suppose.