Maria - Interview 23

Age at interview: 19

Age at diagnosis: 18

Brief Outline:

Maria was diagnosed with temporal lobe epilepsy at the age of 18. She is on 300 mg of lamotrigine a day and her last seizure was a few months before the interview.

Background:

Maria is a 19-year-old student. She lives in a shared student house. Ethnic background / nationality' White British.

More about me...

Maria is 19 and a full-time university student. She had her first seizure in 2005, a day after her 18th birthday. In the following months, she had a few more “clusters of these weird experiences,” which at the time she didn't realise were epileptic seizures. She didn't want to go to a neurologist because she says she "knew it would completely change" her life. Maria did eventually go to see a specialist privately and was diagnosed with temporal lobe epilepsy in October 2006. She said by this time, she knew what they were going to diagnose her with epilepsy. She is now on lamotrigine 300 mg a day and has not had a seizure for several months.

Maria says that having epilepsy has changed her life a lot. Having a daily routine is really important for her to avoid seizures. She goes to bed early every night and gets up early, even at weekends. This does make it difficult for her to stay out with her friends and socialise. She doesn't drink much alcohol at the moment which all makes her feel like she is missing out on a lot of things she used to do and enjoy. Maria thinks it's difficult for young people to appreciate all the subtle ways in which epilepsy affects her life and the things that she needs to consider now. She says the side effects of her medication have also affected her course work and she's found the course much harder this year than the year before.

The eight months since her diagnosis have been really difficult for Maria. She said first she was devastated, stayed at home crying and thought she'd "never feel happy again". She didn't want to talk about it too much with her parents because she didn't want to upset them more. She hasn't told all of her friends about her diagnosis and in certain situations wants to keep her epilepsy "a secret". Maria describes her life as “living in the shadow of the diagnosis,” because she thinks about her epilepsy all the time, every day. She thinks that coming to terms with her diagnosis is a long way away but feels she has already come a long way in the past months; "the intensity" of her initial sadness has passed.

Maria says the information resources for epilepsy are really scant and that she's done a lot of research herself. For example the free bus pass and extra equipment available to support her studies have really made a big difference and she says information about these should be more readily available.

Maria had a seizure during sex before she was diagnosed. She said it was upsetting for them both,...

I did actually once have a seizure while we were having sex. It was before I was diagnosed, so then again I didn't know what it was. It was really unpleasant and he found that really upsetting because he thought that he'd caused it or something. But aside from that it hasn't. Aside from you know when I was really upset and when I get upset about it I'm not really in the mood. But he's really responsive to that, and it's just not a big deal to him, which is really good. I'm definitely fortunate.

How did that incident, how did you react to that, you said that he was really upset, what about you?

I was just upset that it had happened rather than it had happened while we were having sex. He was upset because he thought he'd caused it somehow. For me it was more like, “Oh, this again, what the hell is this, and why is it happening now?”

Do you want to say more about what happened then, did you go into a full seizure?

Yeah, yeah, it was. It was definitely a full seizure and it was one of the longer ones, it maybe lasted about 2 ½ minutes, 3 minutes or something. Yeah.

Did you manage to talk about it then afterwards or?

I don't remember to be honest 'cos it was quite a while ago.

And this didn't make you sort of wary of having sex, it didn't put you off?

No, no, because it was the only time it had happened. I sort of I didn't make a link between the two. So no, it didn't put sort of put me off having sex or sort of make me think if I have sex I'll have one of these things, which I didn't know were seizures.

Since Maria was diagnosed with epilepsy, she has changed a lot of things in her life and adopted ...

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.

Maria's family has been the biggest support for her.

Probably just my family [has been the biggest support] because they're just so non-judgemental and because my brother, one of my brothers and my dad come from a medical background, and my mum comes from a therapeutic background, and she used to be a nurse, so they, they've kind of got an understanding that having a medical problem doesn't have to be a big deal in terms of it doesn't change you, and, what's the other thing I was gonna say? And that you can talk about it openly. And I think that's easier because they come from a bit of a medical background. So I think probably my family that they've just been supportive.

Maria thinks living on her own is not a good idea for her.

I think I'd probably try and avoid living on my own. I just don't think it would be a good idea, because if I was ill and, I didn't feel well enough to leave the house, or thought that it wouldn't be a good idea to leave the house, it would just be nice to know that, there'd be someone who could just keep an eye on me sort of thing.

Maria says it can be difficult for others to understand the subtle ways in which epilepsy can...

It [epilepsy] definitely has changed my life in ways which, it's sort of taken away things which I hadn't appreciated before. I think other people my age who, who know that I'm ill, they sort of find that hard to sort of understand the subtle ways in which it's sort of changed my life. And I suppose unless it's something that you're experiencing, it's a bit like, “Well what's the big deal?” Because I don't have say tonic clonic seizures, my seizures are quite subtle, and since being on my medication I haven't had a proper seizure. So I think unless you really think about it, it's hard to see how it affects your life so much., and so that's one of the reasons why I only told sort of close friends, is because I think, well firstly there is still quite a lot of stigma, and they sort of, I think a lot of people assume that if you have some sort of neurological problem that you must be a bit stupid or something, you know [laughs]. But also because I think it's very hard for young people who don't have epilepsy to really appreciate how the small things can actually be really difficult to deal with.

Maria was 'devastated' when she got the diagnosis and cried for weeks.

To begin with yeah, just cried lots and found it really difficult to explain why I was sad, because it is so difficult to understand from the outside. Just became quite introverted, and felt just devastated really. I felt like I was grieving, in a way, because it felt as though, well in a way I sort of catastrophising to begin with. I was like, “Well I'm never gonna get a job. I'm never gonna get my driver's licence and who's gonna employ someone whose disabled, who might have to miss days off work, and how am I ever gonna pass my exams, because my medications gonna make me, it's gonna affect my memory, and what if I have to leave university, what if all my friends abandon me?” I was thinking all these things and they're not very nice things to think. To begin with it was just spending a lot of time on my own, crying lots, and sort of doing small things which, just to try and make myself feel better, really trying to sort of make the best of it just buying my favourite chocolate bar and watching a good film and hoping that would make me feel better. And sometimes it did, but then sometimes it was like, “Well, why can't I go out and drink my sorrows away?” [laughs]. Yeah, so that's probably most of what I was doing for a long time was sitting on my own and crying.

Maria gets a feeling of déja vu in a complex partial seizure and she feels like her 'insides turn upside down'. She had no idea this could be an epileptic seizure.

I don't remember the very first one, but I remember one of the first ones. I was in my university halls, I was in my flat, and I think it was that day, the one I remember, and I was just sat at the kitchen table, and, sort of got this feeling of, someone said something and I just got this sort of feeling, “Oh, I'm sure they've said before.” Actually I'm sure I've been in this exact situation before. And I image people kind of get that feeling all the time, but then I suddenly felt that I didn't have a clue where I was, but I knew that I knew where I was but I felt that I didn't know where I was. Then, I felt like I couldn't control my limbs, I felt like sort of my body almost became, almost because a dead weight. It felt like my insides sort of turned literally upside down, and this feeling like I was just going to die, and this sort of weird, this is the bit that's really hard to explain because I don't really remember afterwards… but I remember sometimes, and also because apparently while it's happening I tell people, but I don't remember what I said, I sort of get, kind of a vision almost, almost hallucinates. The things I see are always really terrifying. And I feel very afraid and like I want someone to help me, and just this really sinister feeling. Then, very suddenly my sort of insides turn the right way up again and I feel like I'm coming out of it. My heart beats very very fast, and I feel very aware and very awake, and then it stops and the whole thing lasted about two minutes. I thought, “Well, that's weird.” [laughs].

I just assumed it was something psychosomatic, and when I was younger I used to get really terrible headaches when I was stressed or nervous and I thought maybe this, maybe that's developed into this. The thing I was focussing on wasn't so much the things I was seeing in my head, it was more the sort of the physical sensations and I think if you are stressed your mind can be very powerful and can cause horrible physical side effects. So I just blamed it on that, and thought it was a bit weird and got on with my day. And it happened a couple more times and I thought that's a bit strange, never mind get on with my day, and I don't remember the next time it happened, but I think, between then and when I was diagnosed it happened roughly every two months or so. It was quite regular, and it would happen between say 8 and 15 times over twenty four hours, which I didn't think was very often. I thought once every two months, that's not very often but when I saw the neurologist for the first time he said, “Actually that's quite a lot. That's more than most people.” But I really didn't have a clue. So yeah the first time I didn't have the vaguest idea that it could possibly be an epileptic seizure.

Maria has some supportive friends but others find it difficult to appreciate how epilepsy affects...

I definitely think that my social life has been affected a lot, and that's, that's been one of the hardest things, is that I do feel like I'm missing out a lot and it's just not very nice.

Yeah. What, what about your closest friends, closer friends how have they reacted?

Well even there I think a lot of them don't really understand, because they take those things for granted, and, I think it's very easy to say well, “Big deal, you can't go out very often.” So, so? “At least you, you can walk? At least… could be worse?” And yeah it's true it could be worse, but, it's still not great, so, I'd say there's only probably one or two of my friends who've really, really sort of grasped it, and the rest are like, really not very well. But then also I think young people are generally sort of very involved in their own lives, and while you can sort of feel sorry for one of your friends if they're going through a difficult time, you also are thinking, “Well, I want to go out, so I am gonna go out, even if my friend can't.” That sort of thing, so, so yeah I think a lot of my friends probably haven't reacted in an ideal way and that's been difficult as well.

And certainly one or two of my friends have just always been really, really supportive, and very understanding, and sort of asking a lot of questions because they want to know and they want to understand. But then I think beyond that it's such a bizarre thing and something that's so alien to people because it's, if someone looks at me they can't tell that I'm ill, it's not, you know I'm not missing any limbs, I'm not in a wheelchair. So it's very hard for someone else to relate to, and so, yeah, you're right, yeah I probably has lost friends, or, I'm certainly not as close to one or two people as I was a year ago.

Yeah. How does, how do you feel about that?

Oh, it's just sad. It's, and it is upsetting… but then it also makes me appreciate those people who have been supportive, so it's, on one hand it's really horrible, but on the other hand it's, it's made me closer to one or two people and that's nice.

Maria describes the different equipment she received and says it made 'a massive difference' to her.

The disability support office put me in touch with the people who can fund the disabled students' allowance from my LEA [Local Education Authority] and, from them I've been given quite a lot of equipment. I've been given a laptop, and a printer and a digital recorder so that I can record my lectures which has been incredibly helpful 'cos it means that if my concentration is lapsing I don't have to worry about it, and then when it comes to revising I can go over it and listen to it, and listen to things that I won't have remembered. The computer is great because if I do get a seizure, and if I'm not well enough to go to university, at least I can be e-mailed things, and things like that really. So yeah, I've been quite fortunate that I've got that equipment from the university.

So they've been a big help for you?

Yeah, absolutely, it really, really has, it's made a massive difference.

Maria didn't want to see a neurologist because she felt the diagnosis would change her life. She...

And initially I really didn't want to go and see a neurologist, I was I really, really didn't want to because I knew that it would completely change my life. And it would sort of take away a lot of the freedoms that I'd had but, I started thinking about it more and discussed it more with my parents and with my family and I sort of realised that I can't just wish it would go away 'cos it's not going, that's not what's going to happen so, eventually I did go and see a neurologist, and I got diagnosed the end of October last year. 

Do you remember what it was like going to the neurologist appointment?

I remember being just in such a state and, I remember on the journey there because the hospital where my neurologist is, is about ¾ hour from my house, so it's quite a journey. I remember my mum trying to talk about it with me, and I really didn't want to, so I remember doing everything I could to sort of change the conversation and put the radio on because I knew if she even said anything I'd just, I'd just cry. And that won't get me anywhere, and I remember really vividly sat in, being sat in a waiting room just trying not to shake I was so nervous, and being angry with myself that there was a little bit of me which thought well maybe it's not, because I knew, I just knew because after, after the time in August where it happened for three days, I just spent ages looking it up on the internet, and looking through all my dad's text books and it just, it could've been me having written down my experiences, it was so typical. And so I was angry and frustrated that I thought, just for a split second, “Maybe it's not.” Because I felt I wouldn't be prepared, and I remember I went into the room and I was really touched by how nice and sensitive and sort of gentle the neurologist was in talking about it, and I remember being so nervous and shaky that he had to repeat the neurological exam because [laughs], when he tried to get me to push with my hands definitely to make sure that there was no deficit on either side, I was shaking too much for him to even tell. And then he just asked me to explain the, exactly how long it had been happening and exactly what happened in each seizure, and he just said it was basically just a text book case and he sort of explained to me I would probably have to go on medication and that there are a choice of drugs but he recommended lamotrigine and explained to me what the side effects would be and how I would have to start taking it very gradually. And then said he asked if it was alright, if he got my mum into the room, and explained those things to her. I said it would be, and she did and he did bring her in.