It’s always the same sort of thing that happens, with me I’m quite lucky I know whether I’m gonna go. But this one, obviously being my first one, I didn’t have a clue. All of a sudden my vision started to get blurry and I started to twitch. I know that epileptics there’s lots of different ways people have seizures, there’s big seizures, small seizures, seizures that you don’t even know happen. I twitch and I sort of start turning round and I start spinning round and then I’ll just fall to the floor, have a seizure, I think I start shaking and, and whatever happens next. Then that’s it, all I can remember next is being taken out of the school and put into an ambulance and I don’t remember any of the period. Like basically I had to get down these big stairs, I don’t remember getting down these stairs, like I was in a wheelchair they must’ve had to carry me down, it was really strange. So that first experience it was like ‘God what was that?’ but I sort of put it back into the back of my mind and I thought ‘oh it’s just nothing, it’s just exam stress, whatever’, thought nothing of it. Until the second one, that’s when I thought there must be something wrong. In my whole time since I’ve been diagnosed which was in 2004, I haven’t really had that many seizures. I’ve had about six, since my GCSE exam in 2000, it’s not that major actually, compared to some people whove got it anyway. I’m quite lucky.

I said to him [her son] that mummy has fits, I told him that word because it was a short word and it’s, and it’s easy to remember. I said, ‘mummy’s brain gets all fuzzy, and I said, ‘You know what happens on the telly when, when the telly goes off, it gets all fuzzy. And I showed him the picture of the grey fuzz on the telly, and I explained to him that’s what goes on in mummy’s head. I said, ‘My brain’s stopped working and goes all fuzzy for a little while, and then I’m fine. It’s a bit worrying, that I had to tell him that but he took it alright and he sort of understood. And I said to him, ‘You have to, if mummy has a fit on the floor, you must hold mummy’s head and keep it as still as you can so it’s not banging around or banging on the floor, or banging against anything. And he said, ‘Okay mummy. He didn’t really have a lot of questions to ask, I think he was just taking it all in. and he hasn’t mentioned anything about it since apart from to his dad when he said, ‘Oh I’m worried about Mummy having fits,’ But he was okay, he’s a really bright little boy. I would, I’d be happy in the knowledge that if anything did happen he would know what to do. I’ve also taught him how to call ‘999’ and ask for the ambulance, and I’ve taught him his address recently so he knows his address. so if anything happened I suppose he could tell the ambulance yeah I’m proud of my little boy [laughs].

He’s good. I just worry about him worrying about me that’s just one thing that I hate the thought that I’m putting worry on my four year old son about my health it makes me feel really guilty but he’s alright I’m sure he’s handling it.

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.

Are there other things you remember in the house except the, having the shower put in? Are there any other practical things?

Not really, I mean I do sort of be aware of like, I’ve got sharp corners sticking out, and my radiators and stuff like that but, I live alone there’s only so much you can do. I mean the radiator guards and all that, you can have that put on but, I dunno, and I don’t want them on [laughs].

Yeah, why not?

Yeah it, they, they’re not the most attractive things are they radiator guards and the little plastic things that go on the edges of the table. Like I couldn’t go that far just [laughs] because I like my house being like it is but, yeah, I mean I have tried to make safety precautions. Before I had, before I actually had the, the shower I used to get someone to come round and just wait with me while I had a bath ‘cos I was so scared about maybe having a seizure in the bath ‘cos obviously, you’ve got no chance, you’d just drown, yeah but, that’s it really, as, with my house. Sometimes is, there’s someone with me, like I make sure, I’ll make sure that I’ve got someone round here like.

It did worry me when I first found out I had epilepsy. I just didn’t really know too much about it but now I’m better and I’m coping, I know more about it and stuff, well you learn to live with it, and people around me are more understanding, and they understand what to do if I have a fit, so it’s just confidence really, and getting your confidence back because it is quite a bit of a knock. But to be honest, in the beginning when I was first diagnosed, like I said, I didn’t really care. I didn’t really care that I’d been, that I’d been diagnosed with epilepsy like, I was just so ignorant, and it wasn’t until like I had a couple of quite severe fits that I realised that I’ve got to start taking my medication. My self-esteem I think took a drop then, do you know what I mean? When I realised, “Look Charli this is serious now, you’ve got to start taking your medication”, and that’s when my confidence dropped and I thought, “Oh like it’s gonna be difficult”. That’s when I started getting anxious and worried about things so it all sort of started from there. A couple of years ago really my anxiousness, at the beginning, I didn’t care.

Do you think you just wanted to deny the whole thing?

I think so yeah, yeah, probably, I didn’t wanna admit the truth. I was kind of embarrassed I suppose.

It’s just stress really, like I mean I’ve had a couple of stressful patches over the last year and like stressful patches relationship-wise when I stopped eating and really didn’t look after myself very well. But the stress can make you feel very anxious and it’s not nice, ‘cos you just feel on edge all the time and you feel like ‘oh am I gonna have a seizure? I don’t wanna go out because I might have a fit’, like on the street. There’s been times when I’ve been walking in like department stores looking at clothes and it’s all just got too much for me. And I started feeling strange and I just had to get out but I really need to start sort of not thinking about it as much because even now I still think about it a lot, like a few times a day. But I need to start to forget about it, I might go and see my, we have an Epilepsy Nurse at the hospital which I go to, and he’s really lovely, he’s a really nice bloke. And if I do have any problems I can always ring him, or go and see him, so I think I might go and have a chat with him soon. Book myself an appointment and go and have a chat with him about the anxiety, and whether he can suggest anything. Because it’s not a nice feeling when you feel like you’re gonna have a fit, and you’re worried about it and but it’s just, ah it’s a strange one.

Is it constantly thinking about it?

Yeah just, just worrying about it really. Just worrying that it’s gonna happen, and whos gonna be around? Is there anyone gonna be around and when you have it to help you. But I worry for nothing, I’m a bit of a worrier anyway so I think I’m really worrying for nothing but I need to get my head round it is nothing and I’m just worrying unnecessarily. So he might be able to help me with that and I think it’s just taking your mind off of it. I think if my mind’s occupied with stuff, I’ll be alright but it’s when I’m not doing anything and my head’s reeling thinking about things, yeah.

I do have to watch, be careful of my drinking ‘cos I find in the morning after, if I do go out and have a bit of a heavy night, in the morning I’ll feel weird. That’s my way of saying that I feel like a fit’s gonna come on. Sometimes like I said earlier it could be mind over matter where I’m anxious about it, if I know I’ve had a couple of drinks that night before, mind over matter kicks in sometimes and I think ‘oh I feel weird, I feel weird. I probably don’t, I’m just thinking it, I’m making myself feel weird. But yeah if I do go out and do have a bit more than I should have, I do sometimes feel a bit strange in the morning and so I tend not to do that. But all my friends like are aware of what goes on, and everything so, they know what to do if it happens.

The doctor did give me a list of all these things that I can and cannot have. There’s certain things I can’t have. I can’t have the patch because the lamotrigine can affect the effectiveness of it. I was gonna go up to a stronger pill, I’m on the combined pill, Microgynon 30 which has got 30 milligrams of the drug in, she was gonna put me up to fifty, so it was a slightly stronger dose, but because there’s not much tests been done on this, I mean there’s been a few but not that much research has been done into it, so she said, ‘To be honest I wouldn’t worry about it. Because I was worried about putting up my dosage of, up to 50 milligrams I was thinking, ‘oh no maybe I might get spotty, and might put on weight’, ‘cos with the pill obviously those are the side-effects. And if I upped the dose, then I could have more, increased chance of getting fat and I didn’t wanna [laughs] put on any weight or get spotty. So I’m glad that I could stay the same ‘cos I’ve been on it for about five years now and within the last three years nothing’s happened so, ben alright. I’ve been on that pill for like the last five years and for the last three years I haven’t fallen pregnant and I’ve been on that pill, I’ve been taking my epilepsy medication as well as, like you know [laughs], and I haven’t become pregnant so it must be working. I don’t think there’s any chance, any need to increase it. But there was certain ones I can’t take being on that medication, but that’s it.