I think it was more difficult for my family then it was for me, they had to sort put up with the seizures and being ill and I think as well they were sort of like, oh don’t let her go anywhere on her own and sort of you know trying to look after me all the time. Which became a burden for them as much as it was for me as well. So, especially my sister, you know, as well, I think she sort of felt it the most.

In what way?

Well, we are sort of very similar in age and I think she was at actually at one point, I think she was quite embarrassed to bring people sort of round just in case in case anything happened you know and she sort of had to be there, so I think that was probably the most’

And did it affect your relationship with her and how sort of close you were or anything like that?

No I think if anything it has actually brought us closer together. But I think it is more a case now that she sort of feels responsible, you know, and feels like she has to look after me and stuff despite her being her the younger sister. But other than that really not a lot has changed and that is a good thing.

Do you ever feel overprotected by people?

Yes. I feel overprotected all the time. My family like sort of don’t want me to go anywhere on my own, so I have to go somewhere’ wherever I go someone has to go with me, so that is a bit irritating, especially when it comes to things like buying birthday presents and stuff you know and they are all with you [laughs].

Do you come across lots of sort of ignorance or misconceptions people have about epilepsy when you tell them or when you talk to them about it?

Well yeah, and I think the major one is as I say that they don’t think that there’s are any other types of seizures other than what they sort of perceive a seizure to be. And also for myself it is if I do have a seizure is being called a drunk afterwards, you know most of the times I haven’t drunk anything before a seizure and I think people are kind of quick to jump to judgements about how you are or how they think you are, when really you are nothing, you know. You are just a normal person really with just something else going on.

What could they think about the sort of person you might be then?

I am not sure really, but you can kind of sort of see it in people and they, I think they treat you differently as well and I think that is the major thing, and really you just sort of want to be left alone to get on with things, you know, but it is this kind of sort of wrapping you up in cotton wool type thing that people tend to do.

So at the moment you are not on any treatment?

No.

How do you feel about all that? How have you come to the decision to have no treatment?

Well I think because the seizures are so rare and they don’t really cause me too much trouble and we decided that that was probably better than starting medication, because it could take us a while to find a right dose, or a right type of drug that will actually do something for me. So we just decided to rather than to have to go through all that trouble and then contend with possible side effects, we just decided to leave it as it was.

Could you describe how you think that epilepsy affects just your daily life at the moment?

Yeah, it does affect it. You can say that it doesn’t but really it does, even as much as you know, sort of being on your own in the house and things that like and people would rather that you were with someone and stuff. And you know going places, you always sort of think one step ahead, you know and you think do I feel okay to cross this road you know and all this sort of stuff as well and you are constantly, it is almost like doing a risk assessment everywhere you go and your whole time you are thinking about the potential possibility of having a seizure and how that is going to cause a problem or affect you at that time or where you are.

So is it on your mind a lot?

It is yeah. Not so much as ‘oh I am worried about having a seizure’ or ‘I am embarrassed about having a seizure’ but it is more a case of you know if I do have a seizure am I gonna hurt myself falling on this floor is really what the problem is.

And have you had to make changes in terms of safety, like taking showers instead of baths or’?

Yes. I take a shower instead of a bath and if I am in the bathroom I don’t lock the door and stuff you know and at first it was I was made to sing or talk or something so that they knew that I was okay [laughs]. But now they sort of let me get on with it.

And how do you feel about having to leave the door unlocked or stuff like that?

At first it was quite a shock and it made you feel a bit uncomfortable and you feel like well I wouldn’t have to do this normally, so why should I do it now, but you get used to it in the end you know.

In that time before you got the right diagnosis were you at that time treated or were you on medication?

No I wasn’t on any medication or any sort of treatments. I was just sort of left to get on with things, which I felt very frustrated at first, and I was like why can’t they do something for me, why aren’t they doing anything. But I think they thought may be side effects of medication if it wouldn’t work would be something to contend with rather than just sort of putting up with the seizures.

And how do you feel about’ because it was a long time before you got the diagnosis. How do you feel about all that time that it took and the effect it had on you not getting it earlier?

I think it took longer than it should have taken. They should have been able to diagnose me, pretty well straight away, I think. And I think it did affect me. It affected friends more than anything they sort of became oh I don’t really want to go out with you, you know, I don’t really want to feel responsible for you and all this sort of stuff and I think the most important thing at that time was it really highlighted to me, sort of who your friends are who aren’t. But I think that was probably the most major thing about the waiting for so long for a proper diagnosis.

For me it starts with an aura in which everything becomes really huge and I sort of feel really really small, almost a sort of Alice in Wonderland type effect. And then really the next thing I know is coming round. I have no idea what happens in between that feeling and coming round. But I think to the general public it just looks like a faint that is really all I can describe it as.

Can you describe more about the aura?
Actually you sort of go through a range of emotions. I don’t think it lasts for any longer than may be 30 seconds itself as well, but at first you sort of feel very frightened and you think, oh what is happening because it is all visual. And then you sort of feel slightly calm and a bit surreal almost and then you sort of think, well okay I am accepting it now, I know what is going to happen. I know what is coming next and that is really it. But it is a really strange experience and I remember the first time it ever happening was really scary and I was like what is going on? But it is, objects becoming bigger than you, being really large and you just feel yourself like you are really, really tiny.
And do you tell somebody when it happens?
No because usually by that point I have already sort of lost the ability to warn anybody but I think some people can tell, because I will just be like sitting there or standing there, but as far as actually like sort of communicating what is going to happen next it doesn’t happen.

Actually it happened all rather quickly. I was actually at work with my first, the first time I ever had the experience of a seizure and I sort of felt really weird and I didn’t know what was wrong and the next thing I knew I just sort of collapsed and there was the whole staff around me and I didn’t have any idea what happened and that was my first seizure.

I remember sort of feeling a bit ill like I was coming down with a cold and then I remember saying to the staff saying I feel really strange and I don’t know what is wrong. And they said to me ‘oh go and sit down, go and take ten minutes, it is fine, you know, sort of have a rest’, and then I sort of headed through to the back room and then the next thing I know I am sort of coming round and I had no idea what happened in between. I had sort of no warning for anything coming on or anything so. But that was the first time and I think at first everybody thought it was like a faint, because it looked similar to a fainting spell but actually it turned out not to be a faint.

And have your work mates told you what had happened?

Well they yeah they did, but because it was just it looked like a faint, they just assumed that I had fainted at that point. The only difference that we sort of noticed was that you can always tell when you sort of feel like you are going to faint and you feel very light headed and a bit sick, but I didn’t have any of those sort of feelings at all.

You just talked about having a laugh about epilepsy on the webforum, so could you tell me a bit more about that?

Well it varies really. I mean there’s people there, you know if you are having a bad day and you having a rant and stuff and they’ll sort of try and make you feel a bit better. Or tell you to just get on with things and stop moaning you know and they’ll sort of post bits of information and stuff as well. But there’s also a side of it which is sort of like we have a laugh and joke about things as much as possible you know.

So would you make jokes with each other?

Yeah. Jokes about it and sort of epilepsy related and how it makes us different from everybody else, you know and that kind of thing as well.

So what sort of jokes, could you remember any?

Well I mean they vary and depending on various sorts of circumstances but really it is sort of the way we sort of relate to the seizures as well. Some of names we have for them whereas I know that we call mine a gravel grovelling [laugh] session which is quite funny. And it is sometimes good to refer to them like that rather than say oh it is atonic drop seizures and stuff.

And what other nicknames would you have?

Well there is various things like referring to epilepsy as Mr E you know and oh breakdancing and all this sort of stuff you know.

Do you ever get upset about any jokes or having a laugh?

No. I mean sometimes you can, but really you have to take them at face value really of what they are and not try and sort of think too deeply about them you know.