What about otherwise, did all your flatmates know about your epilepsy? Or did they need to know?

I think they were aware of it, yeah, for the most part. I’m pretty sure that the people, the girls in the top flat weren’t that aware of it, they weren’t aware of anything to be honest. If I was being brutal. But anyway. But certainly all my flat mates knew about it, the lads who lived on our side of it, the three lads were definitely, knew all about it. Knew what to do, what to deal with it, the lad who lived exactly opposite me he was, he actually, I remember actually, I actually collapsed, he picked me up and actually carried me okay, this lad is like 14 stone, then although I’m a bit lighter now actually I have to say, I was like 18, 19 stone of man, and he dragged me back to my bed. That is a man you’ve got to love okay? Dragged me back to my bed, called my parents, got me ice, got everything cooled down, and you know, I’ve just gone like that. And lots of people knew I had it, people knew cos they’d seen it happen or they’d said, ‘Are you coming out?’ ‘Well I can’t come out just yet because Nick is just getting better. And stuff like that you know.

I’ve been very naughty in the past and I haven’t sort of informed the people I’m living with [laughs]. Which is why it came as the greatest shock to them if something did happen. It took me a very long time to even come out quietly, a casual hint, not sort of coming up to them, greeting hands, ‘Hello, yes we’re going to be living together, this is my label, I’m an epileptic.

I’ve got a lot of contacts, quite a lot of contacts actually from the lady who is the disability support officer at university., she made sure I kept up with regular e-mails always asking, how, the first thing she would ask was how I was, how I’d been doing, there’s some more information and so forth, and one of the first things she did was as soon as I mentioned a concern she would think you know okay I’ll get back to you in a couple of days, a couple of days later she would come back with a solution. One of the problems was, I couldn’t contact my parents inside the halls, no reception. Which is a bit of a design fault for the buildings, but that’s not the point. So she made sure she got somebody to come by, install a phone line; install a phone in my room. No charge, university covered it completely, so whenever I had a fit all my friends had to do pick up the phone, press the quick dial button, got my parents on the other end of the line. I thought that was just absolutely brilliant, so I mean I was very lucky there.

Ben’ Living on my own I think has not only helped with responsibility but has also helped with maturing me a lot and making me realise that there’s more to life, there’s things that you have to do, managing your money, all sorts of things like that were to do with the epilepsy. It’s helped in a way that I’ve been able to be on my own and not have people, although it’s reassuring in certain cases, not have people immediately jumping in when, say I have glitch if I’m gonna have it I have it. My place is pretty padded out I mean I can’t have a bath, so I have a push button shower that turns off after thirty seconds and you just keep pushing the button.

Dad’ Got no gas hob.

Ben’ Radiators.

Dad’ No gas oven.

Ben’ Yeah I haven’t got a cooker which is a shame seeing that I enjoy cooking. So I have to deal with a timed oven, a thermostatic pan so that it stays at the temperature it is and it doesn’t obviously heat up too much, and a microwave, so I’ve gotta be creative with those really.

Dad’ Yeah it actually limits his diet really you know.

Ben’ Yeah when it comes to the healthy eating.

The best that they have managed to do is, with the shower, padded and blocked in radiators, because a couple of times I’ve had a seizure, got stuck with my arm behind the radiator, luckily at the time my parents were there to pull me out. But if I was on my own that would be a serious issue, so they blocked all the radiators in, padded the surfaces, I have to be responsible in the fact of looking at surfaces and realising for myself that it’s gonna be dangerous. For example I would love to have a glass table, but it’s not practical, you know. And I think that’s helped me with the responsibility as well.

Are there other things you remember in the house except the, having the shower put in? Are there any other practical things?

Not really, I mean I do sort of be aware of like, I’ve got sharp corners sticking out, and my radiators and stuff like that but, I live alone there’s only so much you can do. I mean the radiator guards and all that, you can have that put on but, I dunno, and I don’t want them on [laughs].

Yeah, why not?

Yeah it, they, they’re not the most attractive things are they radiator guards and the little plastic things that go on the edges of the table. Like I couldn’t go that far just [laughs] because I like my house being like it is but, yeah, I mean I have tried to make safety precautions. Before I had, before I actually had the, the shower I used to get someone to come round and just wait with me while I had a bath ‘cos I was so scared about maybe having a seizure in the bath ‘cos obviously, you’ve got no chance, you’d just drown, yeah but, that’s it really, as, with my house. Sometimes is, there’s someone with me, like I make sure, I’ll make sure that I’ve got someone round here like.

I’m trying to work out what I can speak about what’s been going on for the past few months ‘cos I’ve moved out of my parents house now, it’s, we’ve tried to find a way that I could be living independently but we’re finding like that quite difficult, so I just don’t know how exactly to mention it, you know, it’s ‘cos now I’m living in a hostel sort of place, I may have need to go back to my parents until I’ve sorted things out.

Yeah. Why do you think it’s been difficult to sort of sort, sort out the sort of independently and’?

Well it’s really ‘cos it’s, the seizures that I have, they don’t last for particularly long lengths of time, and they’re not serious enough to for me to have an ambulance coming to me. But it’s like my mum, she gets really quite worried ‘cos if I was living on my own I could quite easily fall out of bed and bash my head or something like that, and because of that she doesn’t want me to live on my own in case I go and choke myself, or something like that and. So we’re looking into it just now but it looks like won’t be able to get a person to be sleeping over with me every night, ‘cos you can get these sleepover carers but it looks like it would be far too expensive, and I’d probably have to pay for it myself, that would be impossible.

We have found out about another type of monitor that was on the internet when we were looking for other ways that we would, that I could be living, and it would be a bit better than the ones that the council has already ‘cos it would be triggered if the seizure that would happen would be lasting for longer than the average one that I would take. Or if I was out of bed for longer than usual as well, ‘cos usually I get up after having a seizure, and then would go back to bed and hopefully fall asleep again. So it would be quite good if I could just maybe get one of those monitors, ‘cos if that could be linked to the council then if I ever fell out of bed and didn’t get back in straight away then they’d be able to come out and check that I was actually okay and hadn’t broken a leg or something.