It all began when I started getting really bad like headaches and then I started getting sick with them, then one night I lost all feeling down my arm, that was when I was about 15. And they rushed me to the hospital, and they diagnosed a brain cyst, and then shortly after that I started having seizures. Then, this kept continuing so I went back to the doctors and then eventually I had an EEG but they lost the results, so it eventually took a year the diagnosis, ‘cos they lost the results. And then after I’ve been having a lot of problems like with hospitals, doctors, one minute I’m faking them, then I’m not, but now they have said it is epilepsy now, so.

Going back to those early symptoms, what were the headaches and being sick, what was that like? How much do you remember?

Really bad pressure in my head. And just felt really tired all the time. And I kept having to come over from school. And I lost all feeling down my left arm, which I still get today.

And did it happen all the time?

Every day, started every day.

Well the thing is I’m not entirely sure when it started because I never went to a doctor and after my seizures I can’t really remember them. In fact I can’t even remember what I had for breakfast. I think I had yoghurt. But I’m not sure, so remembering far back into my history and I think it’s also something that I’ve kind of blocked out so the problem is I don’t know when it started. But my first kind of memories are of having seizures in my early teens and I really, even though it’s something that was always there I think, it was something that I started to realise was wrong. I realised that other people didn’t have these and that it was something completely different and unique to me. And it was, it is very scary to have something like this and not know what it is. I mean I thought that perhaps I was a witch or you know, I was romanticising a little bit but maybe I was a witch and I had special powers that no one else had and that I just had to find out what they were [laughs]. I kind of thought that I was really special and wow look at me. But these things are actually really horrid. I mean they’re great the first part, they are really scary, but they are kind of a bit, wow I’m seeing into a fourth dimension. And then, like almost like you’re sticking your head through the fabric of reality and looking around and it’s not particularly nice but you’re seeing something really different. But it’s not very nice afterwards. And it was really difficult to come to terms with at any point. But when you’re younger and it made me a very melancholy child. It made me very quiet. I read a lot. I didn’t have many friends. I was bullied because I didn’t have many friends and I was shy. I didn’t like to talk to people, complete opposite of how I’m now. And I just, I think it made me stronger as a person when I was younger, but it made me very reserved, very quiet.

Problem is that they’re, as I said, very hard to describe and my mum, whenever I told my mum about them, she was worried, she thought that maybe I was a bit crazy because people don’t really see that side of epilepsy. When they think epilepsy they think of you kind of, you know they think of the stereotypical epileptic fit, the convulsive fit. Someone falling to the ground, the old spoon in the mouth thing [laugh], which is not actually a good idea and you know people blacking out. They don’t think that you might be able to be awake and when they see you having a complex partial seizure they just think you’ve kind of gone a bit dopey in the head, that you’re just being stupid or that you’re just not paying attention and so they don’t understand what you’re going through. So when I described these things to my mum and my family they just thought maybe I was going a bit crazy and they told me not to tell anyone. Because I had depression as well they were worried that that was to do with that and maybe I was just going a bit loopy in the head. So I never told anyone.

When I was about twelve, thirteen, I used to have problems in like playing games like badminton, would you believe it. When you’re always looking up and you were always hitting it down, I used to have things where I would like have little twitches in my left side, and then I’d have to sit down and that was it. And that was that was just something that I used to talk about with my parents, but we never really thought much about it really I suppose and then when something happens you think back on it and say, that was an early sign.

I was first diagnosed at the hospital as having something wrong with my brain at the age of 11, but, about two years prior to that was the build up. It was quite a long slow build up and what that would mean is I would have absences, blanks, in what I was doing, while I played, things that involved quite a lot of concentration, like computer games, or reading a book that I was very much into. And I wouldn’t be, I don’t think it was an absence seizure, or even an aura, but it was almost like suspended animation, I was almost paralysed, but not in a scary way, I was just, I can’t move but I don’t feel panicked, I’m just like in a kind of a sense of almost asleep while being awake and I would take about half an hour to come out of that. And I was going through that and I, I was quite confused by it, but because I was never scared I never told my mum and that happened you know every couple of months and it wasn’t a big deal to me. But then I was playing monopoly one night, and I was doing something quite complicated, I think I was the banker possibly, and my mum said, ‘Could you pass me that note,’ and I said, ‘What note. And I was like, she said, ‘The note that’s in your hand,’ and I said, ‘I don’t have a note in my hand. And I had, I kind of had a stack of like monopoly money in my hand, and I couldn’t see it, I wasn’t aware that I had it, or what my role was, I was just like, ‘What, why are you talking to me, what, I don’t understand, I just don’t have any money, what, I’m just sitting at the kitchen table talking. I don’t understand. And at that point mum said, okay, go and lie down, I’m going to call the doctor.

Actually it happened all rather quickly. I was actually at work with my first, the first time I ever had the experience of a seizure and I sort of felt really weird and I didn’t know what was wrong and the next thing I knew I just sort of collapsed and there was the whole staff around me and I didn’t have any idea what happened and that was my first seizure.

I remember sort of feeling a bit ill like I was coming down with a cold and then I remember saying to the staff saying I feel really strange and I don’t know what is wrong. And they said to me ‘oh go and sit down, go and take ten minutes, it is fine, you know, sort of have a rest’, and then I sort of headed through to the back room and then the next thing I know I am sort of coming round and I had no idea what happened in between. I had sort of no warning for anything coming on or anything so. But that was the first time and I think at first everybody thought it was like a faint, because it looked similar to a fainting spell but actually it turned out not to be a faint.

And have your work mates told you what had happened?

Well they yeah they did, but because it was just it looked like a faint, they just assumed that I had fainted at that point. The only difference that we sort of noticed was that you can always tell when you sort of feel like you are going to faint and you feel very light headed and a bit sick, but I didn’t have any of those sort of feelings at all.

We never really knew anything was, never really felt that anything was wrong. It was just was one of those situations where it was just all of a sudden, everything happened at once, there was never any build up, just, literally it happened one day. one of those typical days, a school day, I got up, got ready to go to school, I was in my final year of secondary school just building up for my mock exams got up got dressed, had a shower, said goodbye to my mum, and the next thing that my mum says she remembers is she came downstairs, she said goodbye to me, she came downstairs and just found me at the bottom of the stairs obviously having a seizure, you know the whole, sort of arms flailing around, you know. Obviously didn’t have a clue what was going on, because without, with there having been no build up there were never any, sort of never any mention of epilepsy or you know, diabetes with you know having hypos or anything like that, so we had no idea what was going on. She just called an ambulance and paramedics came and I just, all I remember is just coming round on the sofa with two paramedics sort of next to me and that was how it all started really.

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.

When I was in Year Seven at secondary school I had a pretty impressive fit or faint off of the back of the Science stall. And we went to hospital then and they said that they didn’t really know what was wrong, and basically said that I could go home but if it happens that I needed to come again. and nothing really happened for another few years and then I started, having blackouts I’d faint and I’d miss sort of parts of the lessons so I wouldn’t know that everyone else had started a new page or something like that and I used to faint quite a lot. And at first we thought it was related to blood sugar which is what initially one doctor said to us and said, ‘Oh she’ll be okay, when she wakes up give her some sugar and, you know, it’s hypoglycaemia. And then we went to a different doctor who was a diabetes specialist and he said, ‘No that’s wrong, it’s nothing like that. And then he sent me to a neurologist by which time my seizures were getting a lot worse and I was having more major ones and, what people classify as ‘real seizures’ even though they’re all really as bad each other.