Ben - Interview 30
More about me...
Ben is 22 and currently unemployed. When he was about 12 his teachers noticed he was drifting off in classes and they suggested this might be due to epilepsy. However it was only about a year later, after Ben had his first tonic-clonic seizure, that he was diagnosed with epilepsy.
He was prescribed Epilim (sodium valproate) which wasn't at all effective and his epilepsy kept getting worse. Ben says his consultant 'kept fobbing him off' and not changing his medication despite really bad side effects, which resulted in insomnia, aggression and psychiatric problems. Ben and his family fought hard to find a very good neurologist who now looks at his life as a whole, rather than just the medical side. Ben has tried a lot of different medications and at the moment he is on lamotrigine, but his seizures are still uncontrolled. He has a major tonic-clonic seizure almost once a week and also has absence seizures.
In the beginning, Ben says he went through a denial period, coming up to his teenage years, drinking and smoking. At this time he also had a rough patch with his parents. They have since become very close and learnt to "work together". Ben lives on his own and he says it has made him much more independent and mature. As his seizures are so frequent, he has made adjustments to his home, especially in the kitchen and he also has a safe-link alarm.
One of the most difficult things for Ben has been finding work. He does a lot of voluntary work because he wants to work and, “not sit in my house all day with nothing to do”. Ben would want to have a job in manual labour and has also thought about self-employment, for example setting up a bike workshop. Finding work is also complicated by the fact that he doesn't have a driving licence and is restricted to his local area. Ben says this is quite hard for him and he just “wants a reason to get up in the morning”.
Ben says his social life is good and he goes out to pubs and clubs with his mates. He says he prefers being single at the moment as he feels that his epilepsy has put pressure on his girlfriends in the past. He says dealing with epilepsy is also easier with his male friends with whom he can have a joke about it and don't need to make it into such an issue. Ben knows of the risks with epilepsy; SUDEP and possibility of injuries when having seizures. Ben's approach is to live for the day and he is optimistic that they will find medication that will control his seizures!
Ben says he was 'discreetly discriminated' against at work and asked to leave a job shortly after...
Ben says he's trying to improve his overall lifestyle, eat healthily and get enough sleep. He...
Ben had a bad reaction to one AED, which caused insomnia and made him feel edgy and anxious....
Dad' The general opinion is that it was sparked off because of lack of sleep. The tablets that they tried him on kept him awake, I think for about, something like about, you'd been pretty well awake for about 72 hours hadn't you?
Ben' Yeah, at least.
Dad' He developed this, they diagnosed it as'oh what was it.. Anxiety Psychosis, that's it.
Ben' It was difficult as well because when it started off, when I just sort of noticed that things weren't right and I wasn't getting enough sleep and I was a bit edgy, one doctor suggested that it was probably just due to I'm getting used to the tablets. So one idea was to double the dose. I mean obviously any sensible person would take me off of them but, no he was quite sure that it was a case of doubling the dose. Which obviously really went tits up, and caused worse and worse trouble, insomnia was a serious problem. Anxiety, everything about me just changed completely, my friends noticed. But now we've gone through all of that and it finished off with me in the psychiatric ward and basically they said, 'Look it's not right, it can't be done this way.' I managed to recognise the early signs when they put me on other tablets if they were gonna work or not, and I kind of got to the point where I had to decide myself. Luckily I've got friends who were noticing. I'd say to them, 'Right they started me on a new tablet now, can you sort of keep an eye on me, from the outside?'. They'll be quite discreet about it, but at the same time get to the point, so if I'm being edgy with them, they'll say. Which is very, very handy, they're very good to me, I think especially with the seriousness. But all the different tablets they tried, I'm able now to notice things like the insomnia, the anxiety, and now I've got more contact numbers and people that I can call. Nurses that I can speak to, to say, 'Look is this right? this is what I'm experiencing, I've just started these tablets up.' And they give me some feedback as to whether or not it's a good idea to carry it on, or whether to stop them.
Now they're gonna start me on a new type of tablet soon, but they're running out of tablets to give me so they're going for the mix of tablets, see what happens then, which could be quite interesting. But the whole aspect in general about tablets is a big' to be honest I think it's more of a problem for me than the epilepsy itself. I've managed to pretty much deal with the epilepsy, accept the facts, have a laugh about it in certain cases. But with the tablets you don't know what's gonna come up, you don't know whether you're gonna be in a psychiatric ward or you're gonna not be able to sleep for 72 hours, whether you're not gonna be, you know, end up being all nasty to your friends, edgy with people, it's difficult. I think that's probably the worst out of all of it.
Ben prefers being single. He feels women are more sensitive about his epilepsy and that it's not...
But I've found with women, relationships it's more, they're a bit more sensitive about it you can't really have the same laugh as you would with your mates. I prefer in a way to keep the single life and just not mention it. Unless they are previously aware of it, let's say if they've seen me about in town or something like that and I've gone down or they'll say to me, 'How did you get that scratch across your face? How did you get that cut on your hand? How, what's happened to you? What's happened to your neck?' all this sort of thing. On certain occasions I'll make up something, you know. Something sort of hardcore, 'Yeah I was out and about and this situation happened and, but I only got a scratch, you should have seen them.'
Dad' Got jumped on by twelve people.
Ben' Yeah. Yeah I would still take them all on. But the people who know me they know what it is, they know that I'm not that type of person but they know where the cuts and scratches come from. They'll simply look at me and say, 'Oh you had another one then?' And that's my friends, 'cos they know.
Ben has had a seizure twice when having sex. He says the best thing to do is to make a joke about...
Though Ben's had injuries before, he enjoys riding his bike and doesn't always wear a helmet. He...
Living on his own has made Ben more responsible. He lists the adjustments he's made to his home:...
Dad' Got no gas hob.
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.
Ben got help from Workability and Royal British Legion Industries (RLBI), who can also help with...
Dad' They've been helpful to you but they haven't actually found you anything yet.
Ben' No. I think that's more a case of them having to come back to me but RBLI is more my interests and what I would like to do, how I would like to work. Whereas Workability is finding the jobs available in the area and saying, 'Is this a good idea for you? Is this not travelling-wise?' See with the RBLI they've said to me that there's, I can't remember what was called now, something like 'getting into work' or 'help getting to work' where they will arrange for a taxi to pick me up and drive me to work and back again. So I can explore work outside of the area which is wonderful so there's that option as well, yeah it's quite, quite helpful really.