I had to have some additional rails fitted in the bathroom for example and the bed. I’ve got one of these monkey bar things over my bed, but that’s not so much for epilepsy, that’s for my back injury. I do get very worried about having a bath by myself because if I have a seizure in the bath it could be fatal, I could drown. You’re supposed to have a shower but I can’t get a shower, the people concerned won’t allow me to have a shower fitted and I don’t really want to push it too much because I don’t want to leave this particular flat, I’m quite happy in here. I am on the whole able to look after myself and do all the usual things that one would do at home, cooking, eating, um cleaning – though you wouldn’t think so at the moment!

But later, later on, you learn to cope with them [seizures]. You try to take the stigma away from yourself. You try to go out, which I did. I used to go swimming a lot, I used to love me swimming lessons. I used to go to swimming baths, but I always had somebody with me somebody I know, a friend that I knew, and it uh, it brought me out a little bit, going to the swimming baths.

I used to go swimming every Friday but there were always somebody there that knew me. Going a lot, you see, everybody knew me. And in fact I did have an attack at the swimming baths, I can remember while I were there, and that was in the changing room while I were there. And one of the lads that were there, he run down for me mother. And it must have been a big attack while I were there. Because he wouldn’t have run down for me mother if he hadn’t, if uh, he wouldn’t have run down for her at all at the time. But you see everybody were considerate, they sort of knew me. They sort of knew. You see if you go to certain places all the time, people get to know you, they know who you are and if owt happens they help you. They help you, they do help you.

Well the only thing that I would have really liked to have done and I can’t do is dive. I would liked to have dived because my husband is really into diving and I feel that he gets a lot out of that and I would have liked to have done that as well. But theres absolutely no way that anybody will licence me to dive because of my epilepsy and my husband has got medical clearance to do it because his epilepsy is so controlled. So he can do it and that’s all very nice but I can’t and that’s a shame.

‘But I’ve never let it affect my social life or going out and dancing all night or anything like that, which is probably not the most sensible thing to do but you know I have a bit of a personal policy about it which is that I won’t let it rule my life and I won’t be subject to it if you see what I mean.

That’s the sort of thing I think people don’t understand about epilepsy as well, it’s that it isn’t possible for me to have a job, to jump into my car, drive home, leap into the bath, get out of the bath and iron my favourite clothing, then drive over to my friend’s house to go to a disco and have a few drinks. Because none of these can I do by myself. I’ve got to wait an hour for the local bus and in this country were dependent on the worst public transport in Europe. I don’t have a job because people are frightened to employ me and yet I’ve proven I can work by the charity work I’m doing, even only to myself.

So I don’t have a job, I can’t drive, I don’t know how much alcohol I can safely take with the tablets I’m on at the moment, mainly because one doctor was a bit wary a while ago of telling me what to take so I just thought it was safer not to use alcohol. And now I’ve been without alcohol for so long I think if I did have a drink it would go straight to my head, so it’s probably not worth the risk. You know I can’t drive home, I can’t do the ironing by myself, it’s only sensible to make sure theres another adult around when I get into a bath, so most of the time its quick strip washes with several bowlfuls of water if I’m alone. It’s this sort of minor restriction that is irritable to somebody who has epilepsy but not even thought of by someone who doesn’t because it is comparatively trivial. But when it happens day after day after day that trivia tends to waste away and it becomes sometimes a nuisance and sometimes a big irritation.

The other problems that sufferers do have are things like electrical equipment and what have you. And I find that if I’m not one hundred per cent, I’ve stuttered a little bit recently in this interview, it is difficult for me to play around with electrical gear. So one has to be careful and sensible about it. It’s important I think when one, a power breaker is very useful with electrical equipment. Sporting-wise, I used to love being goalkeeper. It’s not the most sensible thing if you’ve got a head injury, damaged your head, because I was one of those goalkeepers that rushed at peoples feet, that was my strength, rather than brilliant diving saves! And so I did get knocked out on a couple of occasions – it didn’t help. This, I mean one has to be sensible and that wasn’t a very sensible thing to do. So I now content myself with just watching football. But it is, and I also developed a liking for cricket, which was more sensible but of course one has to be careful about the right protection etc.

‘So I think one has to be sensible and go for sports and things that are, are not going to aggravate the situation. But that doesn’t mean one doesn’t do any sport. I know there are several sufferers who run marathons and things like that and I think that is admirable and I think that those who can do that should because they do raise a lot of money.

Another matter I think is what can you do with epilepsy. You are frequently told you cannot do this, cannot do that, it’s too dangerous. Yes, there are certain things that you shouldn’t do, like going up the highest ladder. But I found that there was a time, in the early 90s I was very cautious and wouldn’t do this and wouldn’t do that. And I remember I was on a north Cornwall beach and my father-in-law in his 70s was surfing on a belly-board. And he kept on asking me to belly-board and I wouldn’t. So in the end I decided to shut him up and to have a go on the belly-board. And I thoroughly enjoyed it, it was exhilarating and I think it may well have been the time when I really felt that I was able to cope with the epilepsy better; I was less sorry for myself. And this is where my black sense of humour came in’ I felt if I was going to die and have a fit on a belly-board, at least it would be a jolly good way to go.

Since then I haven’t done anything silly but I’ve enjoyed stiff walks up mountains and things like that. And I think it’s important, as long as you know your parameters, not to be overly protective. I’d say this to carers as well as sufferers but don’t be silly, go within your parameters in all walks, whether it be your employment, your leisure, and I would strongly advise that.

In terms o; SUDEP I first came across it when my brother sadly died in 1995 from it. First time I’d seen it actually published was in 1997/’98 when I realised it was actually SUDEP that [my brother] had died from.

Hed had the condition since the early ’70s and I think that one of the main questions that people ask me is ‘Do you think it would have made a difference to him if hed know about it?’ My comment to that would be, because he was a very strong character, that if I’d gone to him in 1994 and said ‘Do you know about this thing called SUDEP and it says, as the epilepsy charity states, better control means you know theres less chance of you dying from the condition. I think his answer to that probably have been ‘Well I’ve had it this long, i.e., 20 years, the chances of it happening to me now would be virtually non existent.

How old was he;

[My brother] was 41 when he actually died, he developed the condition after an accident as I say in the early ’70s, so he was in his first or second year at university.