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Simon - Interview 31

Age at interview: 21
Age at diagnosis: 17
Brief Outline: Simon was diagnosed with epilepsy when he was 17. He is currently on Epilim (sodium valproate) and has been seizure-free for 2 years.
Background: Simon is 21 and he lives in a residential college for young people with epilepsy. Ethnic background / nationality' White British.

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Simon is 21 and a full-time residential student at a college for young people with epilepsy. He was diagnosed with epilepsy when he was 17. He was then put on Epilim (sodium valproate) and has been seizure-free now for 2 years. Simon says even though he doesn't like taking tablets he is happy that the medication is controlling his epilepsy and it also helps with his concentration. He says Epilim (sodium valproate) does make him feel very tired and drowsy too but he just has to "get on with it".

Simon has stayed at the college for two years and has another year to go. He says he really enjoys living there as the college is in the countryside and Simon enjoys nature and working at the college farm. Simon's favourite lessons are woodwork and film making. Simon has been doing the script-writing for films he and his classmates have been making. Living at the college has helped Simon to become more independent. He is responsible for planning his own meals; the food budget, shopping for the ingredients and also cooking his meals.

Simon goes to stay at home every other weekend. He is the eldest brother and has a younger sister and a brother; they all get on really well. When Simon goes home he helps out his mum around the house with cleaning and shopping. Simon says his family is really important to him and he enjoys spending time together doing fun things.

Simon has a lot of friends, both from school and now from college. With his friends Simon likes to go out for a meal or to the cinema, or just socialise together. Simon met his girlfriend at the college and they've now been together for 2 years. Simon says living with epilepsy is not nice but just something one can't help and just has "to put up with all your life". In the future, Simon wants to move to a flat with his friends and get an office job.

 

Simon has learnt to do many things by himself at the residential college.

Simon has learnt to do many things by himself at the residential college.

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So what sort of things do you do, you know, on your own here in this house now?

Simon' Like I do my washing, cleaning, I, I cook my own dinner myself. Yeah so, I do…

Keyworker' Plan your meals don't you?

Simon' I plan my meals every day. Like we do on a Monday we get a certain amount of money and then we go out to town and buy the ingredients for it, I do that all myself, like for the first time last Monday, I, when we went to the supermarket and I went round and did all the, got all the ingredients for myself, and I had a shopping list and I sort of looked at my shopping list and went round getting what was all on the shopping list, paid for it all and, brought it back here and put it, you know put my name sort of on it and put it all in like the fridge, the cupboard, the freezer and all, and all of that.

And then you'd cook it yourself and?

Simon' Like we, we cook a different meal each day and yeah…

Yeah so you planned sort of everything on your own and?

Simon' Yeah.

You have to make sure that the money lasts, and it's enough and?

Simon' Yes, we do.

Yeah. Do you enjoy that? Do you enjoy being, that independent?

Simon' Yes I, yes I very am. I do sort of enjoy doing things on my own, I enjoy, sometimes, my friends from this hostel, I enjoy doing travel training with them like going, like sometimes we walk up to the village together, and do a bit of shopping up there and, and then like say, we would walk from here, go by ourselves, and then we'd have someone from the staff shadowing us and, doing it together.

 

Simon says it's sometimes difficult to remember to take his tablets. He doesn't like taking them...

Simon says it's sometimes difficult to remember to take his tablets. He doesn't like taking them...

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Simon' I think it's quite a sort of thing that a lot of people have it in life, and some people can't really help it. It's just, they have in their life and they take sort of medication for it.

Yeah, yeah, do you take medication?

Simon' Yes. Yeah.

And do you remember yourself or does somebody remind you?

Simon' I sort of remember to do it myself.

Keyworker' And we remind you as well don't we.

Simon' Sometimes I get reminded because sometimes, during the mornings I forget and 'cos I would completely forget and go off and do something else.

Yeah, yeah it can be difficult to remember every day, every time.

Simon' Yeah, yeah.

Yeah, do you think the medication helps you?

Simon' Yes it does yeah.

In what way do you think it helps you?

Simon' It helps me, you know not to have like seizures and stuff, you know. And one of them helps me with my concentration and I think it's quite a good sort of thing to have. But sometimes, I don't really like sort of taking it but I have to take it at times.

Why don't you sometimes like it?

Simon' Because I just don't like taking tablets really but I have to just in case anything happens or…

 

Simon says staying in hospital was 'scary' but that the staff on the ward were nice.

Simon says staying in hospital was 'scary' but that the staff on the ward were nice.

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What was it like in hospital do you remember?

You know really scary and stuff, like I didn't know where I was at. I was just in a scary environment really.

Were there other young people there on the ward or in the hospital?

There was young people like all sorts of different sort of people going past me like, all sorts of different injuries and…

I didn't like that at all and I wanted my mum to come with me and they would say to me, the only person that could come with me was my brother at the time. My mum and my sister couldn't come with me and I really wanted them to come and it was just like sort of sad for me really. You know that's the one thing I got scared of.

Yes, what were the nurses and doctors like do you remember?

Quite nice to me really.

They were nice?

Yeah.

Yeah so did that help a little bit?

Yeah it, it did a bit yes. Like if I needed anything I called them or, yeah.

 

Simon describes the residential college he goes to. He made new friends there and learnt...

Simon describes the residential college he goes to. He made new friends there and learnt...

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What's that been like? What is it like [at college]?

It's been, I've really enjoyed myself because I've been at other schools and, since I've left school I like this place 'cos it's in the countryside and I like stuff to do with nature and like looking after animals and things. I like doing, working on the farm and doing sort of things outside. I have friends in college as well as outside the college as well. Like I have friends in my tutor group and, which I get on well, really well with, and we have like trips out together, which is like good fun to have together really. It's like you know that, when you have friends that's a good sort of thing to do and we like sort of going out to places and you know just spending time together really. Like when we're in college we spend time together, like break times and just talking to each other and asking each other about what's been going on and just catching up on things.

I've done work prep were I've done visiting stuff around the community like, if I would leave here, I would know where everything is like the doctors, the hairdressers and stuff like that. And I would know where it is and I would go to it and know how to like make appointments there myself. Like go out in the community and find it, just to like work with, work-prep. I've sort of come, I've just completed that, you know that and then I'd do on a Tuesday I have like Life Skills.

Okay what's that then?

It's where we do stuff, stuff on like healthy eating, like eating healthy things, to like sort of projects on like eating like not too much sort of chocolates, like chocolate and stuff and keep an eye on our weight.

Yeah, yeah things that are good for you.

Like making ourselves healthy meals every day.

 

Simon has a lot of friends both at home and college. Together they go out for a meal, to the...

Simon has a lot of friends both at home and college. Together they go out for a meal, to the...

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When I was at school I had friends which I still go and see and, and I've been in contact with them for, since I first, I left school really. And I still go and you know see them at times and yeah and they stay in contact with me. And, and if they have anything on they sort of, we go and see each other and they don't live, shop very far away from, in my home. So I can, like either ask my mum and dad to like drop me off there and then spend time with them and come, and then come back later or something. So I have friends round my area where I live and that I go and sort of see now and again and it's quite good thing to do really.

Yeah, what do you do together with your friends?

Like we go sometimes we go out to the cinema, we would go out for a meal together, we… we would do, we go bowling together sometimes. We would go, I go to their house and basically have a meal over there or something and, and we'd play a few sort of games over there and to just like socialise over there really. Catch up on sort of things that they've done and I tell them things that I'd done and so that we, we'd just catch up on like news and that. Cos I like sort of hearing what they've done and, and I like hearing what I'd done.

 

Simon said the EEG and MRI were 'scary' for him because he didn't know what they'd involve, but...

Simon said the EEG and MRI were 'scary' for him because he didn't know what they'd involve, but...

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When you were in hospital, have you had these tests done, where they put these things on your head?

Simon' Yeah, yes.

Keyworker' The EEG.

Yeah and when you go into the big, the MRI scan?

Simon' Yeah, yes I have yeah.

What were those tests like?

Simon' Quite sort of scary for me really and I didn't know what they were gonna do and, it was quite sort of frightening for me and 'cos it's something new to me that I had never had done before really.

Did the doctors explain to you what they were doing?

Simon' Yes, yeah. Yeah they did.

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