How about talking to your husband, does that help you?

Yes, of course that has helped me, but then again one also feels the burden of talking to ones partner. Of unloading on ones partner when its quite hard, I think, for ones partner to be constantly giving out to me because he needs a life of his own as well. So it’s quite hard when I think that it’s easy if both of you to become depressed and you both need outside help.

Is your husband often here to help you then or, you mentioned last time that hed changed his job and hes maybe around a lot more, or did I get that wrong?

No you haven’t got that wrong, after thirty-seven years of working in the same job hes left. I don’t think that has meant that hes been here more though. And I don’t want him to have to feel that he needs to look after me, I think that’s a horrible thing for another person to have to feel, even though he might like to feel he doesn’t want to leave me alone I think hes got to. I’ve got to be alone; I’ve got to live my own life. And I want to live my own life.

So there aren’t any great problems that stick in my mind from the beginning. It was as I got older that it became a problem because I think independence is the main thing that was, that you are restricted with, if you have got uncontrolled epilepsy, it is that restriction, it’s a nuisance. So for example when I was in my teens and after a very caring, over-protective mother not wanting me to go and ride on friends’ motorbikes or go to discos or do anything like that, I tended to think well I’ve got to struggle to show I can do it and I can do it safely, whereas my little sister gets it handed to her on a plate because shes safe. And things like that went through my mind then. And again as I got older it was more difficult to, to give her peace of mind with the idea of me leaving home at all. She had to be confident that I was put in the polytechnic – as was – housing scheme rather than just go and find a house like a lot of my friends did.

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.

When the second time it came round, when I had the second fit which wasn’t very long afterwards, and they decided that ‘yeah you’ve got epilepsy’, my grandmother, my grandparents, my grandmother particularly was really distraught, sobbing. And basically my parents were supportive but, they kept the, its like they kept the lid on things. Yeah they didn’t want, there was a degree of shame if you like, not, I don’t mean that unkindly on them, I think they meant well and they were very supportive to me. But they didn’t want to go round saying ‘Excuse me but my son’s an epileptic,’ and they would much rather I suppose naturally talk about success rather than what was certainly perceived as a failure.

I’ve gotta say I kept a lot from him. I never told him what he done. I would say for instance like ‘You’ve had a seizure. He would say ‘Oh what happened?’ And I would play it down. I wouldn’t tell him all what had happened, fear of embarrassing him for a start, so I kept an awful lot back.

And how many children have you got?

I’ve got two sons.

And have they been you know over the years have they learnt a lot more about epilepsy?

Again I kept a lot from them. It was only, I think last year my eldest son who is now 26, he actually saw [my husband] having a seizure sitting in that chair down there. And he, I could see it happening, so I asked my daughter-in-law to take the grandchildren out and [my son] was sat there and at the end he said ‘Mum, I didn’t realise it was as bad. How, how on earth have you coped?’ You do, you don’t go round telling people what you’re going through, you do keep a lot, a lot to yourself. And people say to me ‘You should tell your children,’ but why should you, they’ve got their lives to lead, they don’t really want to know.

Could you talk about your own feelings with your friend?

Yes, yes she, like you know she was about the only one I could talk to because nobody else would understand, because if somebody’s not seen somebody having a seizure they would think well what are you on about. And living with it even is totally different to someone seeing a seizure, living with the personality change is very hard, I’d say none of its easy. But you have to be strong for them you know.

Like all through, because [my husband] has always had a lot of illness, I’ve always had to be strong. Theres no way I can go down, because he sticks under me if you know what I mean. He totally depends, and he has said this himself, he totally depends on me as his memory, as everything really, because the memory side of things has totally gone, over the years it has done so much damage.