Interview EP01

Age at interview: 48

Age at diagnosis: 10

Brief Outline: Diagnosed with epilepsy in 1964. Tried various drugs but these did not control seizures. In an attempt to have an acceptable quality of life, decided to stop taking anti-epileptic drugs in 2001 and is on a Chinese/macrobiotic diet. Current medication' diazepam (Valium) when needed.

Background: Voluntary work, including running Oxfordshire Epilepsy Support Group; married, 1 adult child.

Recalls feeling shocked and trying to prove herself.

I don't remember an awful lot about being told that I had epilepsy, whether people did tell me I just don't remember, it just came as a big shock, this frightening thing that happened. I went along to the Hospital here, I lived in a village and I met a consultant who seemed to have not an awful lot of interest in me. I'm sure he hardly even looked at me, I was in the room for maybe two or three minutes. He would ask me about how many fits I'd had and I would say how many fits I'd had that year and I wouldn't see him for another year.

I was put on drugs. At the beginning Epanutin and there was I, a 10 year old girl, never having heard of epilepsy before suddenly thrown into my secondary school with this thing that seemed to shock everybody and caused everybody great upset and fear. And although it caused me upset and fear as well I pretended it didn't and I tried to be really cool and hard about all this but inside its, I think each seizure just killed me really.

I rebelled quite a lot at school. I found that the only way to, for me to survive was by pretending that nothing really got to me, that I was as good as the next person, if not better. And so instead of being able to be my own personality I had to be this rather hard person who joined up with a group of girls who seemed to be really quite sophisticated, doing things that I would never want to do. But I just pretended I was also doing them, and getting into trouble with the teachers.

Because I think that's one of the things that's so important about epilepsy is it's so easy to lose confidence in oneself. 

Discusses her concerns about being a burden on her husband.

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 one's partner. Of unloading on one's partner when its quite hard, I think, for one's 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 he'd changed his job and he's 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 he's left. I don't think that has meant that he's 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 he's got to. I've got to be alone; I've got to live my own life. And I want to live my own life.

Discusses some of the difficulties with having tonic clonic seizures.

I think they last about fifteen minutes, I think probably after fifteen to twenty minutes I'm completely with it again. I know how to get home if I'm out, I know where I am, I know what to do next. Unfortunately in the last few years I seem to have started, in the last few years I've become incontinent in a seizure, not just single, not just singly but doubly incontinent which is horrible. I think that really sums up the humiliation of having a fit. Not only have you just had a fit so you've got this shocking headache, you don't really know where you are, you feel upset, but you're wet. Your clothes are wet and dirty and if I'm on my own I've got to deal with that. So clearing that all up is really nasty. For years and years, for more than twenty years I, I wasn't ever incontinent but that seems to have been the thing that as I've got older has occurred. I've also got a shoulder that doesn't work, which is to do with the strain as I have a seizure I seem to always go around on one side and that puts my shoulder, it dislocates. It no longer dislocates because its so out of joint but it, there's nothing to dislocate in or out of.

Discusses having photosensitive epilepsy and how her emotions can affect her seizures.

And I find shopping really difficult with the lights and the, the heat of the shops and the movement of everything and everybody so I don't run to a town if I can help it, I'd rather stay in quieter situations which is a shame because there's a big part of me loves window-shopping and going and watching films and going to, the theatre seems to be fine. Cinema is more of a problem, especially these days. The type of filming is so different to how it used to be and I see, and the television as well. The type of filming that's on the television now I think is particularly unhelpful for people with epilepsy, there seems to be a lot of coming in close and flashing which I find quite difficult to watch. In fact I often don't watch it because of that. I also find I'm terribly sensitive to noise, so the cinema with its decibels of volume, I sometimes wonder whether the whole world is deaf and its just me who can hear things normally!  

'I mean it's difficult to say whether that's just the epilepsy or how much emotional content is involved in that as well and also what is epilepsy. It seems to me so charged with emotions, with one's own emotions. I find that when I'm happier I have fewer fits. When I'm unhappy I have more fits. Which in a sense speaks for itself and it's a vicious circle.

Explains why she came off all anti-epileptic drugs.

Well one was lamotrigine and one was Keppra, I did take one other but I haven't got that name readily available. But I seemed to lose all my feelings, my senses, I was unable to taste things, to hear like I used to, to see like I used to. I used to cry all the time. I got terribly, terribly depressed. I still had seizures. One of the drugs did help with the photosensitivity but I think that was Lamotrigine but the side effects were so dreadful, I was just, I became a non-person. I couldn't converse, I couldn't do anything, except cry. So after three years, I gave them a good try, and after three years I'm off now, the Keppra, that was the last drug I tried and it's a year exactly since I last took my last pill, anti-convulsant drug. And I do feel so much better.  It's taken a year really to recover completely and to regain my confidence.

Explains why she slowly came off all medication.

One of the drugs did help with the photosensitivity but I think that was Lamotrigine but the side effects were so dreadful, I was just, I became a non-person. I couldn't converse, I couldn't do anything, except cry. So after three years, I gave them a good try, and after three years I'm off now, the Keppra, that was the last drug I tried and it's a year exactly 

since I last took my last pill, anti-convulsant drug. And I do feel so much better. It's taken a year really to recover completely and to regain my confidence.

Discusses the Chinese diet she is on.

At the moment I am on a specific type of diet which I have been given by a Chinese health carer, who tells me that this diet will cure my epilepsy in three years. It's fairly basic so it's quite hard really to stick to but I took, I did it twenty years ago between the first baby and the second baby and that was the time that I had fewest seizures. I think I only had one seizure in eighteen months and that's the longest I've ever gone in my life 

But its not conclusive I feel because it could be to do with the hormonal changes of pregnancy, of having a young baby, breast-feeding and then pregnancy again, I don't know. I'm hoping that it will heal my epilepsy. It's similar to a macrobiotic diet. It's no processed foods, no caffeine, no alcohol, no white flour, white sugar, just basic foods, brown flour, brown pasta, brown rice and lots of vegetables. No potatoes and tomatoes and spinach, but otherwise all the vegetables. 

So how long have you been doing this diet? 

Since October. 

And how do you feel so far?

My husband tells me that I'm in better health, definitely not taking dairy produce I don't have problems with my sinuses any longer, which I hadn't realised that that was the link, so that's interesting. 

Describes her feelings of depression and failure.

Yeah, it's true I've had a fair amount of depression over the years. I think probably beginning after the death of our baby, again. I was helped considerably by the people in the church that I belong to, they were absolutely marvellous. There was always somebody who was willing to listen and to pray for me if that's what I wanted to do. And that has been a terrific support. In fact I'm not sure where I would be without the support of my faith and the people, the family of the church. I've had, I've been up to the Hospital, I've had group therapy, I've had individual therapy. I find it really, really difficult being depressed. 

Can you tell me a bit about how you feel? Do you feel isolated or you know, is it difficult to do anything? 

I feel a failure, I feel a failure because it's such a disappointment every time I have a seizure. I get things going again afterwards, but it takes about a week now to get the courage and the confidence to get back out again and doing things. I know that its not good to stay in the house, I know that from somebody who is suffering from depression that that is the last thing really you want to do and yet I don't feel able to go out and to chat happily with people, just in the street or at the local shop, because I don't feel able to go out.

Discusses rebelling at school and her feelings towards her teachers now.

I rebelled quite a lot at school. I found that the only way to, for me to survive was by pretending that nothing really got to me, that I was as good as the next person, if not better. And so instead of being able to be my own personality I had to be this rather hard person who joined up with a group of girls who seemed to be really quite sophisticated, doing things that I would never want to do. But I just pretended I was also doing them, and getting into trouble with the teachers. I passed a few 'O' Levels, I think I got my two English 'O' Levels and cookery and the rest of the exams I failed. Exams used to cause me to have seizures, the tension and the fright, the fright of them. 

...With my schooling, I feel very, very angry about my schooling, I would love to be able to contact a couple of the teachers. One, to ask one of them have they ever considered how discouraging and how damning they were being to me. And to the other one to apologise for not being able to take up the offer which this lady made to me, that she said she would be happy for me to, I wasn't allowed to go in the swimming pool with the others, but she did say that she would be happy for me to go in afterwards by myself and she would watch me. Well as a 14 year old girl I didn't want to go into a swimming pool after everybody else had got out, and be watched by the teacher, but it was a very kind offer when I think back to that and I'd like to tell her that it was very kind. But I've got an immense amount of anger in me, which would be good to, and I am trying to get, to deal with it. I'm accepting that its there and I am trying to deal with it. 

Explains that, although there are financial restrictions, personal happiness is more important.

Have there been any financial implications because of this or that's not come into it for you?

No, for me there have been many financial limitations. We've never been on holiday, these two trips to the United States and to Canada, they were paid for, I was very lucky I got a '60 ticket because a family member is a pilot so I've been very, very lucky with the help that I've been given. It seems to really have just fallen into place and a lot of the complementary therapy has ended up for me as being, I haven't had to pay for it. So I do feel that I've been very blessed in those situations. But we haven't got the things that we'd like to have. We haven't got a car that works all the time. It puts an extra strain and burden on us as a family having my husband working in a relatively low paid job; me as his wife not bringing in any paid income. So that has been difficult. Its been frustrating not being able to do the things that I would have liked to have done because I haven't had the money to do them, and I think one can see that in a sense if one looks. But on the other hand it's also a learning process that material things aren't the things that are most important. And really to be happy and to live one's life happily is really what I'm aiming to do. 

During pregnancy her baby was found to have health problems and died at birth, she discusses whether it was caused by her anti-epileptic drugs.

When I was about 26, I got married and I had two babies, the first baby was fine. I was still having seizures all this time, about six a year. The second baby, or the second pregnancy, there seemed to be something the matter with me, I was very unwell and I had a scan and the scan proved that the baby had spina bifida and hydrocephalus. And although at the time they said it was absolutely nothing to do with the drugs I was on there was a group that was promoting folic acid at the time and that group said they felt that was the reason that this had happened to my baby, because  the drugs I was on were stopping the folic acid in the body. Anyway I was, it was too late for me to have it terminated so I carried on with the pregnancy. They didn't know whether the baby would die during pregnancy, die at birth, or maybe live for a few months. They didn't, it was quite severe and they didn't think that the baby would live for longer than a few months. Well that was a very, very traumatic time for me, very emotional. The baby died at birth, I had wonderful help from the doctors at the Hospital and the new Hospital, as it was then. They did all they could for me, I felt. 

...But I decided I wanted a second baby, I wanted another baby so I came off the drugs. The interesting thing now when I look back is that although the medical advice was that there was nothing, my baby's death was nothing to do with the drugs I was taking, now they don't give that drug to women who are considering having babies. So that says to me that probably they would agree that it had something to do with it. 
 

Explains that her seizure frightened her son and how children might have to defend their parents.

One thing that I found quite difficult was how my son related to my epilepsy. And we've always been very up front with him about it and talked to him at his level, that he could understand what it was, making very little of it. And saying it was a perfectly normal thing to have, just like any medical condition but not everybody had it and I had it. And one day when he was about 3 or 4 years old I had a fit at home with him alone, with just the two of us here, and he must have run up to me to see what I could do, I was lying on the ground. And there's a phase during my seizures when I spit a bit, in fact I always warn people not to come too close but I spat at him, into his face and he was really, really frightened at his mummy doing this. And he ran and hid behind our speakers, which are big enough to hide behind...

But I think it's quite hard in school for children to be talking and then someone says 'Oh your mummy has fits,' and the little child's got to stand up for itself and say 'Well OK yeah my mummy has fits, so what.' So I think that's quite a difficult aspect and I think that's something that people really benefit from talking to other people, about how they've managed with their children.
 

Advises getting referred to a neurologist and accepting support from others.

Well I would ask them [a newly diagnosed person] who diagnosed their epilepsy and I would say if it was their GP and their GP hasn't referred them to a specialist I would say go back to the GP and ask for a referral to a neurologist because I think that's of absolute importance. I know it's difficult with the NHS in dire straits financially but I think we need to fight for these things and I would encourage the person to do that. And I would encourage them that life can go on with epilepsy, that you can do most of the things you want to do providing you accept what epilepsy is. Read about it, find out about it, tell people about it, show them that you're not frightened of it. Or if you are frightened show them you are frightened, but talk to them about it, tell them what to do, give them leaflets to read about how to deal with it. And you know live, live life to the full, life's very short and very precious and I think it's very sad to just put your arms around yourself and say 'I've got epilepsy, I can't live.' You can.  But I think you need to do it with the support of other people.