Can you, maybe tell me a bit more about the routine that you have in your life? What is your daily or weekly routine?

Well the main thing is getting enough sleep. So, I always go to bed probably between eleven and eleven thirty. And then I always get up at 8, or sometimes a bit later, maybe nine if I’m having a lie in, feeling a bit crazy [laughs]. I try and eat healthily because the medication I’m on can affect my immune system. So just try to be healthy, not drinking, certainly not doing any illegal recreational drugs, going out very rarely and only when I feel well, and only when I know that I’ve had a week where I’ve had plenty of sleep, but also not too much sleep because that can also cause seizures. And also because if you have too much of a lie in then you’re not gonna want to go to bed early that night, blah, blah, blah, always thinking am I going to be able to get home on my own tonight. If I do just go out to the pub with my friends, before they go out to a night club or something. Will I have to go and get a taxi, can I afford a taxi? If I get the bus is it gonna be safe for me to walk home from the bus? Taking all these things into consideration thinking, well can I really afford to go to that party because I know I have to get up early in the morning, but then if I don’t go, then that person’s gonna think I don’t like them, they’re gonna take it really personally, so it’s fairly rigid and. This summer I’m going to America and I’m already thinking hang on I need to work out what the time difference is gonna be, because I can’t take my medication at different times. Does that mean that I’m gonna have to wake up in the middle of the night to take my medication, but then what if I can’t get back to sleep? And that means I’m not gonna have enough sleep, and then what about on the plane, what do I do blah, blah, blah? So, it’s frustrating, and it’s not the end of the world, by any means and it could be an awful lot worse, but, because I’m a young person and I’m at university I can’t lead the life of other students my age, and that’s difficult.

The things that I do I try to keep myself a bit more healthy as well, I mean especially living on my own, it was a fair few takeaways. I’ve started to try and improve my health style as well as my lifestyle, and the bad things of my lifestyle and social life. You know, getting proper sleep, making it a bit more regular, see what works and what doesn’t work, try and get a bit more of an idea so I can give feedback to the consultant and they can make a bit more of a diagnosis about it. But I mean I’m 22 now, it’s been pretty much the same since I was fourteen, fifteen, it’s been, it went from an average of every two weeks to every week and it can be anything from half an hour, where I’ve woken up after one and gone into another, only happened twice though. From, if you like, that six days to two weeks so after a week if I go for another week or two without the seizure I kind of develop more and more paranoia, depression, all that sort of thing that goes with it as to ‘come on, you know, just have the fit so I can get back to normal lifestyle. I’ve noted down a few points, stages I’ve been in, areas I’ve been in where I haven’t ever had one. Sort of I tried to note down those points and what maybe could be in the surrounding or what I’m doing at the time that could have an issue. Bu it’s the best you can do really. I see the consultant every six months so it’s, I have to have things prepared over that duration of time, I have to get things pretty prepared, so I can give necessary feedback. But it’s, yeah it’s pretty much the best I can do.

I try to make sure that I’ve slept well and I follow the GI [Glycemic Index] diet to control my blood sugar levels. Yeah. I make sure I don’t get over hot, and obviously stuff where I might come in contact with you know lighting effects and that.

Are you on the diet particularly because of epilepsy?

Well it helps but I found that it also helps with the ADHD as well, and, yes just that really [laughs].

Can you tell me more about the diet? What it involves? What you eat, what you don’t eat?

It’s things like substituting things like, you substitute white breads and pastas and that for wholemeal, and you balance out the protein and the carbohydrates and vegetables and that. They’re advertising it a lot now on TV and that, by, and they use colour charts, red, yellow and green.

And how long have you been on this diet?

For almost a year now.

And you’ve noticed a difference?

Yes.

In what way?

Well, it stabilises the blood sugar levels because I have to have a kit to make sure that they’re okay every so often. Yeah, and, basically, the decrease in caffeine helps me sleep and that. Yeah and there’s not so much processed food in my diet.

So no artificial things and preservatives in the food?

Yeah yeah.

Do you find it difficult to follow that diet?

Sometimes. But it’s not that hard really. Yeah because most places now are sort of advertising it everywhere and all the celebrities are following it now, so that helps.

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.

I know that it’s mainly loud noises that set me off and so I make sure I’m clear of loud noises or that I expect you know so that I know when it’s, you know like as you can imagine I’m not very good on horror movies ‘cos you know, you know and all that ‘oh’ sort of scary stuff and loud noises, they’re not really too good for me so, but, you know I just make sure I know where’s there’s loud noises sort of thing.

There’s so many people, well it’s 60,000 at the stadium now, you now and on the train the crowd can get you know, there’s a lot of people, and they can easily bump into you if you’re not expecting it, and that can set you off so, I’m always making sure that I’m close to mum and dad there as well so they’ve, they can look at me and, so that you know I don’t get a seizure sort of thing. But that’s when it, another symptom that could be you know if someone bumped into me so

Yeah, so crowds.

Yeah, crowds I’ll have to watch out for, on the tube, it’s not just the, football, it’s if I go to a hospital appointment.

Okay. On the tube?

Yeah on the tube. Yeah the, the train I go isn’t too bad, but it’s mainly the tube.

And would you go on your own? Would you take public transport on your own?

For a long while since, I haven’t been and dunno why, it’s just started happening lately but I haven’t been too confident lately to go by myself. You know if something just happens that makes you think ooh don’t, I don’t know what it was but something set me off, getting very nervous about going on transport on my own, but, you know I did used to do it a lot, you know, but now I’ve, something set off. I’m a bit nervous to get, to get on, you know I feel a bit unprotected when I’m by myself sort of thing. I survive and I grit my teeth through most of it, so I just do that you know, listen to my music so that I’m in my own element sort of thing, you know so that I can just. Yeah I just listen to my to my music so it gives me something to think about you know like the music. I can get lost in the music so I don’t have to worry about all the people around me.

Is that useful for you?

The music? Yes, I find it very useful, listen to a lot of rock music so it’s very useful, like I can get lost in it, and you know I don’t feel so worried then.

For the first couple of years, I practically almost always had my seizures first thing in the morning and when I was on my period. So, I don’t know whether it’s because you always feel a bit more sort of, not, I don’t want to say weaker, but you always feel a bit more sort of, you know what I mean, you always feel a bit more rrrr, don’t you, that sort of time of the month, and I don’t know whether that’s maybe because, cause of that you just always feeling a bit more sort of you know, down, weaker, that kind of thing.

Do you plan things like around the time of the day that, you wouldn’t have anything important in the morning, or you would not travel around your period time, or do anything that would put you at more risk?

Not so much any more because now I tri-cycle my pill. So I don’t have a period very often which was advised by my doctor, she sort of said to me you know if, they said to me if you were, if that’s the risk, you know, if the risk is that you know it’s more likely when you’re on your period, just tri-cycle your pill, so you only have a period every three months, less risk of a seizure, makes perfect sense I suppose.

When it happens, you know if there’s a scene and something strobes, or moves which looks like it could be a problem then I just do this [cover eye] because I was told that this might stop it, I don’t really know how it works, but I remember this from when I was a kid with my sister had it. But it doesn’t really stop me doing anything because if it, if it just came up then I’d just do that, and you know the problem’s gone. It can be quite inconvenient because we went to a Fun Fair at the Bonfire last year, and it was at night time and they had strobe lights and I had to in obviously, open as, there wasn’t anywhere that wasn’t strobing and I had to cover my eye up for 45 minutes, while my friends went on the rides and stuff and then when we were walking back to the bus stop, like this eye had like basically gone to sleep, and the eyelid was like drooping and I couldn’t get it to come back up again, and it was all a bit funny I looked a bit like I wasn’t quite there, but. Yeah so it can be a bit inconvenient and you can look quite strange but fortunately I’ve got great friends and so when a strobe light comes on in a club they all start dancing like this so it’s, it’s not just me, so they all think, they all just automatically do it, we all do it, and it’s just you know a bit of a laugh. People look at us as weird, but it’s not like they’re looking at me weird they’re looking at all of us weird so it’s alright [laughs].

What would those trigger factors be for you?
For me, mainly because it is photosensitive, it is anything to do with light really, which can be you know a big problem. Artificial lighting or so, anything outdoors is okay, but if I don’t eat well, or don’t sleep too well, then that can be that can be a problem or get too stressed. Sometimes I find, because I have my myoclonic seizures I sort of space out a lot in the day which obviously would stop my driving, because I have been seizure free with the grand mal seizures for many years. So it is only really that keeping me from doing anything, but you know I don’t have as many, I suppose I don’t notice the trigger factors now, because I sort of look after my lifestyle and if you if you look after your lifestyle and then look at your trigger factors then you do lead a pretty normal life.

Sometimes I’ll call the people up at the cinema. Or I will ask people if they have seen it. A lot of people know now what sort of lights will trigger me off. So I do have to be very careful who I ask, you know, but a lot of people be like oh you’ll be fine, but some people are very careful and they’ll say oh don’t go to that one. But they will, you know, recommend a certain film. And you know it’s again being wise on who you trust. Sometimes although your friend is a friend, you do have to be wise on who you who you do trust and who you tell. You know, you might tell all your friends about the epilepsy and they might all accept but only one or two might be able to deal with it. It is just the way people are. So it is only ever one or two people that I ever go to for things like that I just sort of say, you know, which film shall I pick and you know and they they’re quite wise to know what triggers me off type thing.

Computer is if I turn the brightness down that helps a bit, and sometimes I wear my sunglasses which make me look weird in winter [laughs], but sometimes I am okay for a while. And other times I really can’t use it at all. But I am okay for a limited amount of time, a few hours. It’s hard at university sometimes, when everything is on line or on Power Point so it means you know I either use one or other type thing, but it is not so bad. It’s awkward, but you know it is better if I have a laptop than you know a computer screen.

I mean just over the past six months I’ve had a few times that I’ve been going a bit hectic causing me to have a few of these bad seizures, well bad lengths of time with extra seizures, so I was phoning the hospital then and they would just speak to me and I would tell them what’s happened, and they would give me some advice and. I mean one time they suggested that I just maybe took a week or so off work to try and get things sorted out to do with housing, and then you know I’d be able to get some extra sleep as well, not have to get up quite as early in the morning, and because of that the seizures wouldn’t get quite as high as they had been and that did help. Then there was another time I had a period of quite a few seizures during the day, and they thought that I might need to actually raise my medication, and we did do that, and it made a difference, but then we tried and a few weeks later when I’d not been having many seizures but I was still getting quite depressed about things, just to decrease it again. The seizures stayed the same, so it was obviously just ‘cos I was going through a bad period of all the things that were going on, that had caused the seizures, and once things had settled down it was fine. So they’re always you know, they’ve always got the way to do things, the right way.

And then like I say, if I’m in that sort of state, if I sort of, anything that I concentrate on maybe drawing, well I sometimes, I’ll draw on the computer, and I like staring at the screen doing that or maybe playing the guitar, something like that, I’ll just notice a sudden twitch of my arm, and then, I just have to say to myself, to stop. And I put down whatever I’m doing, go and get something to eat or go to bed if it’s late. Yeah it does stop me doing things like that sometimes. I don’t draw as much as I used to, to be honest because the one, not only because of that but the one time I had a fit, when I forgot to take my tablets I was drawing on the computer, and I just woke up on the floor and thought that was, that scared me a little bit. So I don’t do it so much. But that was never like a massive part of my life if I was really, if I was like really passionate about it I’d still do it. That, it wouldn’t stop me.

Okay, so concentrating on something is a trigger?

Yeah, that’s I think, I think it’s always a form of stress, like whether it be, like lights or actual like panic or and mine is just that concentration, and I can see it a, I can’t remember if there’s two types, there’s two types of fits, one which starts from a point and spreads everywhere, and one like just happens everywhere at once. If I’m like say drawing, that’s that shake I can, it’s you can see it like spreading from my hand to the rest of my body, and it’s that point of concentration, but, yeah I’ve only, it’s only that one time that I’ve ever hurt myself so. I’ve been quite lucky.

I’m always, ever since we really thought through as to what causes it, which has always been, although the doctors haven’t confirmed it, fatigue, I suppose heat, and although this has never been confirmed, being low blood sugar level, although that’s always been a common factor, but once those three things, it’s always been those three things combined, or maybe two of them at least, and perhaps stress. Stress is also in there I think. But once you combine those factors, I’ve always gotta think those through, so I mean if I’m tired and I’m hungry, I don’t want to go into a cinema or something like that ‘cos that has actually happened, where I was tired of an evening and you know had nothing to eat, so I’m trying to fill up on popcorn which is just stupid, and I go into a cinema and then I’ve had a fit. So it does affect you in that you’ve always gotta think what kind of environment is this? I mean it has been thought about that I shouldn’t go to a hot country, but that’s not as true ‘cos I mean I know, you know people say dry, wet heat, it’s a different kind of heat in a hot country. But if you’re in a hot building, even in a hot basement with a band playing loud music, and you’re trying to speak over it and you’re concentrating on that, that’s, it’s a completely different environment you know. So it does affect you in that you’ve always gotta be conscious of what your causes are, and to avoid those causes.

What about going out and drinking alcohol, does that affect you?

Well it does, like the way I, the way I sort of think about it is, just a sort of like a limit, like a sort of a threshold where if I go below, I then I could have a fit and I think like everyone’s got that threshold but if you’re epileptic it’s sort of naturally lower. And, mine is sort of lowered by drinking, not sleeping, not eating, so if I am gonna be going out drinking I just make sure that I sleep and eat, I just make sure that I basically lie in bed the next day, which is not a hard thing to force myself to do [laughs]. But yeah I’m just I think of it like overall and I try to balance everything. I do have to stop myself if it’s too many like consecutive nights, ‘cos I can’t. I need to rest and recover as like some people will say that I just like power through, or decide to keep yourself up, but I know, I know that I’m not, it’s just not a, it’s not something that I can decide about, I have to go back and rest up after a certain while. But for a one off nights it doesn’t affect me.

Alcohol when I was younger at school, I had a bad experience with alcohol, I did get drunk and ended up on a hill somewhere having a seizure. So I have, I do drink like I have a casual drink but I don’t think now being older I wouldn’t yet again push my luck with friends or anything, by self inflicting it on myself, by alcohol because I know getting drunk will give me a seizure. I also had another experience where I did get drunk and I didn’t have it then but I had it during my sleep which was even more dangerous, so it’s just not, it’s not worth it, I mean it might be a bit sort of, it’s incredibly tempting when you’re around maybe sort of like a bunch of friends who have got a bit [laughs] you know a bit drunk in the pub or something, not like completely paralytic, but you know happy drunk or something and you’re like, ‘Oh, I can never get there. It’s really annoying and you always have to be the one to pick up the pieces cos you’re not drunk and stuff like that, but, it’s yet again, matter of fact, you can’t do it, so. I’m, I don’t go there.