Right yes, the aura was very unusual and, at that time when I didn’t really know what it was all about was quite frightening, even for somebody of 27, so I’d hate to think what it’s like for a child. I had it a few times and until you get onto the tablets where you get controlled it’s, the control with the tablets takes away the aura. So at the very beginning the first few times it happened, I would be looking at something and I’d be able to see it quite clearly in the same way I can see yourself now, but then in front of that would be like this daydream. And the daydream, as I say, in a couple of instances was I’d be stood on the side of a bath and I’d just be looking down at kids who I was teaching, and I’d be telling them to you know swim backstroke or front crawl or whatever. And it was so difficult all of a sudden when you didn’t know what this was about to understand what was going on.

Apparently not long after that I was doing a ballet dance in front of my mum and I did a very involved twisty movement, fell down on the floor and started shaking around, and she said she thought for a while that was still part of the dance (laughs). She didn’t realise there was something happening. That amuses me, to remember because the first time my GP actually saw me have a seizure in his presence he said I sort of got up and looked like I was moving and dancing and he wasn’t quite sure if I was taking the Mickey or having a seizure because he hadn’t seen one himself in all his working life (laughs).

Yes I mean the majority of them are complex partial seizures where I will cut out for a moment or two, come round maybe with a bit of a sore head and feeling tired and think ‘oh did I have another seizure?’ And sometimes again according to my tiredness, my level of down at the time it can be two maybe three minutes even in which case I will come round with quite a sore head, feeling a bit dizzy. And then I know I’ve had a seizure.

So as you were growing up was it always the same or it varied?

It varied, I can remember ever since I was little having this sort of feeling in my stomach of having to run, you know. I remember that. And then in school I think I know I used to find it hard to sort of, I don’t know what the word is, not interact with people, hard to um, I don’t know, whereas people would react sort of normally to arguments as it were, I’d blow up out of nowhere and really lose the plot.

So you would shout?

Yeah and then it would go from there and it was also the more stress I had, then I’d start seeing things. And I’d think people were coming for me you know, and they were just getting closer. So I used to lash out.

It varies to be honest. I usually, it feels like my tongue is ten times the size that it is and my speech becomes really slurred. And I feel, I feel like I’ve gone ‘thick’ because I’m thinking the words in my head but they’re not coming out of my mouth the way that they should be. And last time I had a seizure it was quite bad and I ended up in hospital. But my feet had gone so that I was walking on the sides of my feet, but I didn’t have any control over that. I couldn’t get my legs straight. And I was seeing things coming in through the windows and walls and things. I know they’re not there and I know I’m hallucinating, but theres nothing I can do about it. And its really quite scary, its weird.

So when you have been having the seizures, have they always been the same type of seizures or does it vary?

Oh no I’ve got to be awkward, they do vary quite a bit. When I was younger they used to be, or the ones that were immediately recognised were the major type, tonic-clonic seizures, again I get plenty of warning for those. I’ve always had this opportunity to be able to say ‘Oh Mummy I’ve got my lights,’ which always meant I was going to have a seizure, because I had a sort of prismatic perception in front of me and I was never able to describe that to a doctor until somebody flicked a bit of light under a television screen and I realised then it sort of clicked in my head that’s what I’ve been seeing all these years.

And the idea as well about a dying man seeing his life flashing before him is something I can conceive. I can understand that idea because when you’re going through that sensation its like having a lot of memories running past your mind really quickly and you get the feeling, and if you could just freeze-frame that you could identify with something that’s going through your mind. But it’s going through your mind too quickly for you to stop it and recognise anything and that can be frustrating but exciting at the same time, it’s a funny sensation.

And how long does this warning last?

Well to me it seems like a couple of minutes but people observing me say it’s more like one minute than two. And again the length of the warning will determine or not determine, that will depend upon I suppose the type of severity of the seizure I’m going to have at that moment in time. If I’m under a lot of stress it could be a very, very long seizure in which case the warning will be long.

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, theres nothing to dislocate in or out of.

Yeah I get a warning.

What’s your warning?

It’s just a feeling, its funny, it’s a peculiar feeling, it’s very hard to describe. Its um, its like a nervous thing that comes up, you don’t sort of panic but it sort of comes up from your stomach and your heart floods a bit sort of thing – oh no not this thing again.

Usually if I’m in an area, if theres a few people and I don’t want to make a fool of myself ‘Sorry, I’m just going to the loo,’ and I pop to the loo and sit on the loo for a minute and it passes over. And you become a little bit vacant for a while after, someones talking to you and you say ‘Sorry, what was that again?’ You’ll ask what they’re saying but it’s only for a matter of minutes, and a lot of time people don’t know. But there are some like if I’m out, like yesterday I was out with my husband, I was in a shop, Ikea actually, with my husband and my son. And I could feel it happening and I thought, oh it’ll pass off because some days you feel it come on but it passes off. It just goes away some days. It come on and plonk, I went bang down on the floor and I got up straight away again. You know I think the people in the shop thought I’d tripped over or something. You know my husband’s very good at camouflaging ‘Come on, get up. And my son and that, hes very good and says ‘Are you all right?’ But he doesn’t make a thing of it, none of them make a big thing over it so.

And it was a pain because I could either think or I could speak but I couldn’t do both, which made it really difficult to have a conversation with me. I was once babysitting with my friend, I think I was about 15 or 16 at the time, and she asked me a question and apparently it was five minutes before I answered her. I didn’t realise it was five minutes, but that’s what she said. So basically shed been sitting there, I hadn’t answered her and shed been sitting there and then suddenly I answered this question and because my answer just sounded so random she was like ‘What?’

There were the petit-mals when my eyes flickered and sometimes they could do it really, really badly, so badly that I couldn’t actually see anything. I had to close my eyes because it hurt and it was really strange because even then I would get this same feeling of helplessness and be really emotional and I’d burst into tears over anything. But I couldn’t help it, it just came with it and it was so annoying. The grand-mals were the actual fits and so there were different types.

So yeah, that was one of my bigger stresses, rather than the fits. The fits were annoying, the eye flickering was really, really annoying because I couldn’t control it, never could I control it and it would happen sometimes and I wouldn’t know it, but other people could see it.

And I got myself a job, and was quite happy with it and then whilst working, where I’m actually working now, I discovered that things probably weren’t looking so good because I was having lots and lots of headaches and I was having more seizures in the night. And what was happening now was I was probably having grand mal attacks because I was waking my husband up, without intending to, and I was now biting through my tongue. And I would come round to find myself feeling absolutely awful, thundering headache, I couldn’t move my mouth because I’d bitten through my tongue. There was blood all over the pillow and I realised oh you know this didn’t used to be like this.

It can’t be that bad [now] at night because I’m not biting through my tongue, I don’t get blood on the pillow, I don’t see the blood running down my chin, I don’t have that. Also I haven’t woken my husband, but I have to say he does sleep like I log. But I think if I were to have grand mal in bed it would wake him up. So whilst I wake myself up and I’m thinking ‘oh I think I’ve just had a very bad dream’ and I’m not quite aware of where I am, it’s only a few seconds to pass and I realise I’m at home. It’s my bedroom and you’ve obviously just had a mild seizure. So it does take an awful long time to go back to sleep and yes I’m always left with an absolute thundering headache, but apart from that it’s just fine.

Well luckily I only had probably half a dozen grand mal seizures in those twelve, fifteen years of having the epilepsy and it was actually diagnosed as complex partial seizures and I had one bout of status epilepticus which is when you have a fit, come out, go back in, come out, go back in, and terrified my poor mother (laughs). But that was just the one off.

It was my birthday, and I’d been out with friends and drank much too much and I think that’s probably what caused it. My mum was there luckily and if you want me to describe it, shes told me several times that shell never forget me being in this horrendous sort of distortion. My whole body was twisted up you know, like in spasm, and she said I seemed to sort of, my eyes went back up in my head, made this horrible choking noise in my throat and then I appeared to sort of come out of it, went back into it. And she said this happened several times that she just thought right, although shed done the St John’s Ambulance course she was used to me and my fits and what to do, whether it was a complex or whatever, even grand mal, but this was pretty terrifying. So she got an ambulance and the next day I ached, I remember aching, my body had been in such spasm. Some people have to go through that every day you know or every other day, for me it was luckily just a one off.

Obviously the cycle you go through when you’re having a seizure is, everyone talks about the aura or the initial trigger and that may not happen but ultimately when you’re coming out of a seizure it’s the disorientation process you’re going through, theres parts of your brain which are not working. You haven’t totally shut down because during a seizure I’ve cooked meals and eaten, so that’s fascinating. However, the psychological problem when you’re coming round is the fact that you weren’t in control, so its like having a squirrel in your head that’s doing something different. But when you’re coming out of it theres definitely the depressive stage your going through which is natural, it’s the chemicals in your body which have to control you in some ways, that is what needs to be explained by a neurologist to people, and that is what’s not given time for.

If you become aware of those things you have every right to be depressed. If you want to come out of it and because you’ve got to get on with life, but in many ways by accepting that, you appreciate it’s your body telling you things. If you become aware of those things that’s when you can talk to someone, or cry or whatever it is but those are the areas which now need to be emphasised because everything is about the instance of seizure, its not about that recovery process and that bits fascinating and that’s where the overlap is. I’m now very aware of those things.