Interview EP30

Age at interview: 30

Age at diagnosis: 17

Brief Outline: Diagnosed with epilepsy in 1985. Has tried several different drug treatments, and had 4 years free of seizures. Seizures restarted in 1996 and epilepsy is currently not completely controlled. Current medication' carbamazepine (Tegretol) daily and clobazam (Frisium) when needed.

Background: Not employed at time of interview, previous occupation retailer; married, no children.

Explains her parents' concerns about her independence and well-being.

You said your whole family has been really supportive, what have been their concerns over the years?

I think sort of lack of independence it's perhaps brought me. The, just the sort of discomfort it can bring, a seizure brings you. Or the fact that you have one on a train going into Paddington and people walk over you, you know it takes a nice person to stop, and that's wrong in this sort of world. And I think you know you can put yourself in a situation where you are totally at the you know mercy of other people, and that must be a worry. And just how it, you know affects my day-to-day life, what impact that has on it.

Discusses the skin rash she had with an anti-epileptic drug.

I had with the Keppra, I'd been on it a while and it was OK, it wasn't foolproof. And then about five months after I started taking it, I had a terrible rash, like big nettle welts really all over me, terribly itchy. And a dermatologist said it looked like a drug reaction but there have apparently had been no other, somebody doing research into Keppra had not seen it before. So who knows, but the decision was made that we would come off it and it did clear up so.

So you lowered the dosage and came off quite slowly? 

Yes, very slowly.

Comments that taking medication regularly can be a problem when her routine changes.

And when it comes to taking your medications have there been times when you've forgotten or do you have a pattern?

Yes. I do now, I do have a pattern its very, its fine when you're at home. And when I go to bed I put in a little like you know a plastic medicine pill pot, like you see in hospital, I put my morning ones in there and I take those as soon as I go in the bathroom in the morning. The problems arise when your routine changes and you go on holiday or you go away for the night, or all of those things. And yes I have had fits when I've not taken pills. But normally a few days later. 

Discusses being an accredited volunteer for an epilepsy organisation.

I suppose my, the people that we've used for epilepsy knowledge were mainly The British Epilepsy Association. They've been fantastic, the literature they provide is excellent. And also I'm now actually a trained accredited volunteer with them [epilepsy organisation]. And that means that I can go and lecture on epilepsy or talk to people who have been newly diagnosed with epilepsy. And I enjoy doing that very much, I feel like I'm putting something back.  

Did you always feel that with the information your mum gave you and looking on leaflets and Internet, that kind of thing, did you always feel you had enough information generally on epilepsy?

Yes. And how, and doing the Epilepsy Action volunteer course, that really helped because it gave you a different, well a) it made you look at everything from every angle and you had to do tests on it which you know was good. Yes you think you know something but actually you don't know it as well as you think you do, so yeah that's helped.

Explains her positive outlook despite periods of depression.

I sometimes wonder whether I'll ever kick out at the fact that I've never really let my hair down, which comes with protecting yourself, sleep, things like that.  But on the whole I keep it under wraps. Occasionally I have really, really lost it. And been very, very, very down about it. I've had a fantastic GP, I've been very lucky from that point of view. 

'If anything it's put more into my life, I believe, because I think that I'm a better person - that's not the right expression - but it has given me, people remember you, I mean that's a terrible thing to say but they remember [Name], she's the person with epilepsy. So you know they, it's a discussion topic if nothing else' 'Why aren't you drinking?' Oh well you know 'I have epilepsy.' They start off thinking you're really a dull person you know, oh she's not drinking and they end up thinking actually this is quite interesting. So what do I do, you learn, you're teaching people. It's one of the few topics in life that I get truly passionate about and to me what would I have if I didn't have that. But..

Recalls how she told some colleagues about her epilepsy.

When I joined the firm I joined I went on a, after a few years, I went on a training course and we had to tell the group something at the beginning of the course. We had to tell the group something about ourselves and one guy said 'I turned down premiership football to work for this company, age 17, and now I work for this company'. And everyone had different things like 'I can't roll my tongue or whatever.' And I said 'I've got epilepsy and by the end of this week you'll all know what to do when someone has a fit.' And this girl came up, who was in the room next door to me, came to me that night and she said 'You are so brave.' And I said 'Why?' And she said 'Because I've never told anybody that I have epilepsy.' And to me you're putting yourself in danger. What happens if you have a fit you know in the middle of a store, you know people would be so frightened. I don't want to go to hospital every time I have a fit. I don't need to go to hospital, it's a waste of money and I don't wanna be there. And if she had a fit then who knows what would happen.

So do you carry anything?

Yeah I carry a card which says 'I have epilepsy,' I don't have a bracelet or anything, but there's a card in my wallet. And in my diary it says 'I have epilepsy'. 

Have you found people generally to be quite helpful or? 

I've never met anyone who has taken a disliking or a, offence isn't the right word, but taken issue with the fact that I have epilepsy. If anything they're fascinated by it.

Discusses changes she made to her work because she could not drive and some of the disadvantages...

And then about, I was driving, and about two and half years into working, so by then I'd been almost four years without a fit, I had another fit, on holiday in the sun. And it sort of, my world fell apart again. That was the end of the driving. I had to move location for work, to move to London, so that I didn't have to drive. And I then went on a progression of seizures, on and off, at all different times at the evening, a lot in the morning, and it really started to damage my career and also my self-confidence. 

I am very lucky I live in a city with great public transport and where bikes are the norm. But there are times when I wish I could go to Sainsburys on my own or, the driving is hard, it [not being able to drive] reduces your independence. My friends laugh about me that I'm the biggest walking bus timetable person in the country but, and that's funny, but it involves taking three buses to get to somewhere that you could get to in ten minutes. And yes occasionally you can jump in a cab but you can't live your life like that. And that really frustrates me. 

And you know what's it like being married to somebody who doesn't drink, but she can't drive you anywhere. You know, there are no benefits in that. 

       

Explains that she had difficulties getting life insurance.

There are financial implications, although running a car is expensive, not having a car is also, can be expensive. I've never had a problem with a mortgage, or a few problems with life insurance, and I've just taken out a mortgage and the life insurance wouldn't cover me for certain things because of my epilepsy. 

Explains that she would like more information about pregnancy for women with epilepsy.

My husband and I have been to my consultant and had a frank discussion about epilepsy and what it means to me. But it's one of those subjects that you feel you'll never get quite enough information. Everything slightly contradicts everything else and, you know, yes the percentages are still terribly low of people that have problems but you still wouldn't want that to be you. And then you worry, fine its OK within the neurological world, all the information you've got, but what happens if you go to an obstetrician or a gynaecologist who knows nothing about it? Chances are they will, I'm not being sort of, what's the word, ignorant enough to believe that I'm the only person with epilepsy who's ever had a baby because I know full well that I'm not. But it worries me the treatment that I will get from that side of the medical profession, because it's very important. And you need a lot more scans and things like that and I don't want to appear as this awful woman who comes in and says 'I want a scan, I want this, I want that,' because I want it to be there.

Would you like more information on pregnancy?

Yes, I'd like as much information as I could get. 

On anything specific or..

What I could do beforehand, you know I'm not pregnant yet - what I could do pre-conception. Whether that involves diet or exercise or, I know all of those things that are there for mothers now, and I know I should be taking, I have been taking folic acid, 5 milligrams you know, micrograms even. So I'm doing a lot but with something that important you could, I always feel you could do more. 

Explains how calm and supportive her husband is.

But my husband is fantastic about it. His mother doesn't quite understand as much - perhaps we'll edit that bit! (laughs). But he is very good and you know, when I started seeing him, went and bought books on epilepsy. And found out about it. And I'm very lucky, all the people around me have always accepted it. 

And you said that your husband's been a really good support over the years. In what way has be been a really good support?

He's very calm about it and I think, when you come round from a fit you don't want to know that all hell has let loose. He's very calm and he'll put me to bed and he'll, you know, put me into my pyjamas. And put on a little night light so it's not bright and he'll just be, not sitting there like, I don't wake up to this worried face, he's just listening out for me waking up. And because there's that time with me, there's that time between the end of a seizure and me coming round, in that time he'll have made preparations for tomorrow or made sure someone could be with me. Or just, and it doesn't faze him as far as he's concerned, you know, its just anything, it could be anything.