Kirsty - Interview 01

Age at interview: 20

Age at diagnosis: 19

Brief Outline: Kirsty was diagnosed with epilepsy 10 months before the interview. She is currently on lamotrigine 200mg daily but her tonic-clonic seizures are not controlled at the moment.

Background: Kirsty is 20 and works as a full-time hairdresser. She lives with her boyfriend. Ethnic background / nationality' White British / Welsh.

More about me...

Kirsty is 20 and works as a full-time hairdresser. She was diagnosed with epilepsy about 10 months before the interview. She had her first seizure while on holiday on Tenerife. The second one she had when she was back home and was then diagnosed. She has been on the same medication since, lamotrigine 200 mg per day. The seizures are currently not controlled and happen randomly. The cause of her epilepsy is not known. Kirsty finds the side effects of the medication frustrating, such as bad memory loss, lack of balance and feeling over-emotional.

When she got the diagnosis, Kirsty says she felt low and worried if she could still do the things she enjoyed. The main thing that affected her was not being able to drive her moped anymore - she felt she'd lost her freedom and independence. Now she says epilepsy doesn't affect her life much, she works full-time, goes on holidays and can have a drink. Kirsty says that if it wasn't for all the support from her boyfriend she would still “sit in the house moping”. She can talk with her boyfriend about everything to do with epilepsy which has brought them closer together. Kirsty also feels safer when her boyfriend is around if she has a seizure in public. Kirsty says the Epilepsy Action's webforum is a good place to share experiences of epilepsy with other young people and also to have a laugh. 

Kirsty doesn't have worries about epilepsy in the future because she deals with things as and when they come but she would like more information about the type of epilepsy she has. One major negative aspect is not being able to drive her moped. She is a very independent person and not being able to go for a drive whenever she wants frustrates her a lot.Epilepsy has made her more considerate of life, she says.

Kirsty and her boyfriend are using condoms until her seizures are better controlled because the...

At the moment I'm not allowed to have any contraception, apart from condoms because they said basically we can't give you anything until it's controlled. Because like my epilepsy is quite bad at the moment and they are waiting until it's controlled because of the contraceptive pill will interfere with my lamotrigine so I have to wait [laughs].

And how do you feel about that? 

It's not a big problem, really. He understands anyway. He's really good with stuff like that so it's not a problem at all. It's okay.

Kirsty and her family try not to take epilepsy too seriously and have a laugh together.

My family, they just kind of let things go over their heads, they don't try to let it go in too much. Like when my mum was told she just ignored it kind of thing, but then like when I spoke to her like a few months after she said oh she did cry, and went down to her mum's, my nan's. She said she like still thinks about it, but she doesn't, we don't really speak about it much together. We just kind of joke around about it like, we try not to acknowledge it too seriously, we just try to let it go over our heads, because it's much easier that way.

What would you joke about it? 

My dad would just like take the mick, and just say like, "Ah yeah come on I want to see you shake around on the floor and stuff, I want to film you and show all my friends". And I just wouldn't mind and he just tries to say like jokes about epilepsy and all that, and I laugh along with it, because it's not a serious problem to be honest [laughs]. It's alright.

Would you make jokes as well?

Yeah, I don't mind, if people say a joke to me I'll laugh along with them because I find it quite funny as well. I'm not a too serious person anyway.

So would you ever be upset about any of those jokes?

No, not really, not really no. I don't mind it, as long as the right person is saying it like because like I don't mind if it's like a jokey joke, but if they take it too far, then you can get upset sometimes but you just say to them, like stop, it's gone a bit too far, and they're like, alright, then they just say sorry, and it's okay.

The side effects Kirsty has had include memory problems, feeling emotional and problems with her...

Yeah [laughs], memory loss is really bad. I can't remember anything no more, I used to have a good memory but now so forgetful. And my balance, I just fall over nothing, I just wobble everywhere and stuff like that. Sometimes it can make me 

feel really tired, just when I've taken one like an hour after I've taken one you are just tired, really tired of them.

They [medication] definitely make me more emotional. Like before I was taking them I used to just like be fine, I wouldn't cry about anything, but now if a movie comes on I cry over slushy movies and stuff, and I never used to do that. They do make me a cry a lot easier, I'll just cry about anything now. Stupid things which I never used to [laughs].

You said about the memory loss, can you tell me a bit more how that affects your daily life?

Really badly, like if someone's says, like that I forget my medication, that's one of them, it makes me forget. If someone says can you do this for me, I'll say yeah, yeah, yeah, but then I'll say oh text me five minutes before to remind me because I'll forget, and I do. They'll text me and I'll just go oh yeah, I forgot I had to do that. I just forget everything. It's quite bad [laughs].

And do people realise that it is because of the treatment?

I'll say to them yeah. They'll say like, "Ah you're late" or something or, "You didn't", "You forgot to get this for me," I was like, "Yes sorry, medication again." They're like, "Ah it's okay." They're cool, they deal with it.

And how do you feel about that? The memory loss and the balance, and the crying'?

It does annoy me sometimes because it feels like I can't control my emotions and my mind, and its just like aah, really frustrating. You can't do these things, but, you just have to deal with it. There's nothing else you can do but deal with it.
 

Kirsty says her boyfriend has been amazing and, without him, she'd still be sitting in her room...

He's [boyfriend] really good. Without him I wouldn't have, I'd just be sat in this room still, upset, on my own, wouldn't go out, but he's amazing. He's helped me through it.

How has he helped you so much? 

Like he's the one, like basically I can't go out without him, because if I have a seizure, he's the one, he knows what to do. He trained in what to do just for that. I'd only been with him a month when I was diagnosed and I thought oh no, he's gonna run away, I've got this thing, and he totally understood about it. He talks to me about it with everything, he asks me like how I'm feeling. And if I'm gonna have a fit he'll like take me somewhere out of the way so that no one can see me. But he's good.

What training did he have? 

He basically learnt like to put me in the recovery position, all stuff like that, and if like, you know and if the fit is more than five minutes, he knows what to do, just in case something goes wrong.

How do you feel about that?

Very safe, that's why I won't really go anywhere without him, or without anyone that knows what they are doing, just in case. But I'm really happy that like he's taught, like he learnt all the stuff like that, just for me.

I think it's definitely brought us closer together. I mean we were really close anyway, we talk about anything, he does everything for me, I do anything for him. I think it's a good relationship anyway but because of that it brings us closer together. We can talk about things, like before I wasn't really good talking about stuff, but since I've had this I've had no choice otherwise it'd all be locked in my mind and it would drive me crazy if I didn't talk. So now we can just talk about anything, talk about epilepsy, talk about what not. He understands that like it drives me crazy in that I can't drive, and he'll try and get someone to take me out somewhere or he'll take me out for a meal, take me out to the cinema just to take my mind off things. He's really good [laughs].

Kirsty likes to drink and enjoy herself but tries to keep to her safe limit, as she is likely to...

I can drink yeah, but I've got to put a limit on myself, like I can't get absolutely up bladdered off my face, but I can have like a good drink and be okay.

How many could you have?

Um, okay for instance yesterday I had like six bottles of Reef, and I wasn't drunk but I was like happy drunk and I was fine, that was yesterday. But I can't really have much more than that, like I know when to stop because I know, 'Oh stop you might have a fit or something', but it does definitely affect you having a seizure.

What about the next day, if you've had a drink?

Yeah, that normally the next day I can, but then I think I'm not going to stop drinking you know if I have a seizure I get over it in twenty minutes. I want to drink I want to have a good time, I'm not going to stop drinking for the fact that I'm going to 

have one seizure the next day, I'd rather have the seizure and have a good time to be honest. I don't mind. It's just a little seizure [laughs].
 

Kirsty had just bought a new moped and was 'devastated' when she was told she couldn't drive...

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.
 

Kirsty was 'distraught' that she couldn't drive her moped anymore.

Okay, when I first had my first seizure I was on holiday in Tenerife. But I had had quite a bit to drink, so they kind of put it down to the too much alcohol at first. They said, "Ah if you have anymore come back." And then I was out again and I hadn't been drinking and I had another one. So they sent me to the hospital and that's when they diagnosed me with it, at the beginning. And when they told me I just blanked them, I just didn't really, I was just like didn't listen to basically what they said, like I started crying, because they said I couldn't drive anymore. I didn't really care about the epilepsy I just wanted to drive my bike, and then I spoke to the nurse and she said about it all the medication and I just didn't listen and when I actually came home and sat on my own, I kind of like realised that like I had something wrong.

When they told me I had epilepsy, I blanked that and I started crying because I couldn't drive. I drive, I drove a moped, I love mopeds. I've been brought up with bikes all my life and I've had one since I was 16, and 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, but 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.
 

Kirsty can 'have a little chat' with her friends whenever she wants. Not all her friends know...

I've told some people, yeah, but not everyone, because I don't want them to think oh she's telling me, she wants me, she wants them to feel sorry for me. I just, I just act normal with them, I don't, I've told some people, only my closest friends, but I don't tell everyone cos I don't want them to feel sorry for me, I don't want them to act differently towards me and be wary around me, so I just keep it to myself mostly around some people.

So, the friends that you did tell, your best friends, what were their reactions, or how are they about it now?

They're fine with it. People don't really act that much to it, because it's quite common now anyway. They didn't really act, they just said oh you know if you want to talk I'm here, if you need anything. And they all give me lifts in their cars and stuff cos I'm not allowed to drive, so I can use them for that, but, they're fine with it. Absolutely fine.

And they're, are they quite sort of supportive as well.

Yeah. Definitely. 

Emotionally? 

Yeah. If I want to talk to them they'll say oh come on over have a little chat about it and then I just chat with them.

Kirsty wants to know more about her epilepsy but feels uncomfortable asking questions when she...

I've got loads of questions in my head to ask them, but when I see them and ask them they don't really give me straightforward answers. So I don't really know what kind of epilepsy I've got and I don't really know much about the epilepsy I've got really. To be honest I ask them questions and they all say different things.

Do you see different people?

Yeah. There's never really the same person, so you can't really get comfortable with the doctor. Sometimes if I go to see a doctor I need to get to know them and see them more than once before I start asking them questions. But you just get random doctors, that you don't really know or haven't seen before so you. I don't like to ask them things, or talk to them about it because I feel like they don't know me.

And who do you see? Is it a neurologist or your GP, or who do you see? 

I've seen a neurologist in the hospital once, and then I saw a nurse, but if I just need to get a prescription for my tablets down the doctors I go down there. But then there's always someone different, but they don't ask you anything, how you're doing with it, or anything, they just give you a prescription [laughs] and then you leave.

And that's it?

Yeah. That's it.

And you would have lots of questions to ask them? 

Yeah, kind of. I have questions, but then I don't ask them because I don't know them, because it's always someone different. And if you want to see the same doctor you can't. You've just got to have basically whoever's there.

Kirsty asked a lot of questions on the web forum when she was diagnosed. Everyone there is really...

I just wanted to know like if they could, like I knew obviously you could get on with life as normal, but I just wanted to know if there was like any cutbacks or anything holding them back and stuff, and they were like, "No, no, no, there's nothing." You know, you just get on with it like I do, I've learnt from them you just get on with it and deal with it and if you have a problem you just go on and say to them like oh I've got a problem, and they'll just say, "No, no, no, carry on" and stuff like that.

Were they all so sort of positive about it?

Yeah, this time, like obviously like you get some new members who've just got it and they're like you know, "I've just discovered the site and I've got epilepsy, I don't know what to do about it." And then everyone will leave a comment for them, a positive comment for them, and they're like, "Ah thanks, that's really actually made me feel better about it." And then they're okay then so they join a little positive group and you get another little one, and you say stuff to them.

That's really great. 

Yeah they're like a big family.

How did you find about that group? 

I think there was leaflets from the hospital it was, they give it to me to have a look. Like there was a few different things on there and then they said about this website and I then just had a look at it. And I didn't, I quickly signed up to it, and didn't go on it for a few months, and then when I got used to the idea I went on there and I started talking to people, and they are all actually really nice people.