Clair - Interview 18
More about me...
Clair is 22 and a full-time support worker for young people with epilepsy. She was diagnosed with epilepsy at 19, just as she started her physiotherapy degree at university. She had her first seizure while running on her own, training for tetrathlon nationals but was told it was just a faint. After her second seizure, which also happened while she was running, she was referred to hospital. Doctors first thought there might be a problem with her heart and only after her third seizure she had an MRI and was put on AED.
Clair says the first six months of university were really difficult. Because of the seizures and the medication side effects she can't remember much of that time. She also felt a bit isolated just having moved far away from home and dealing with the diagnosis. Clair says it was difficult to make friends at uni because she had to go to bed early and couldn't be part of all of the social activities going on. However, the friendships she made at this time are very strong. At this time she met a boy through a mutual friend who showed real interest in her and in epilepsy. He is now her boyfriend and they've been together for 2 years. Clair says he has been really “amazing” and helped her be more positive about epilepsy.
Clair is now on lamotrigine and hasn't had a seizure for 2 years. She feels 'lucky' having now come through the other side of it all, has got 'her life back' and now feels much more in control of her life. For example, she has got her driving licence back which has been a big thing for her.
Clair has always been very sporty and done lots of different kinds of sport. She said it was difficult to have to cut down on exercise. She is now slowly getting back to it and hopes to run a marathon one day! Regular routine is really important for Clair to keep well, she tries to get good sleep and drinks little alcohol. Clair has just started a job as a support worker for young people with epilepsy and she is also doing an epilepsy volunteer scheme with Epilepsy Action.
Clair used to be really sporty but after having a few seizures while exercising she has stopped...
Clair used to be really sporty but after having a few seizures while exercising she has stopped...
When Clair got her licence back she worried in case she'd forgotten how to drive. Now she feels...
When Clair got her licence back she worried in case she'd forgotten how to drive. Now she feels...
I was really scared [when she got her driving licence back] and thought, "How will I ever remember [laughs] how to do it", but actually it's just like riding a bike you can just drive again. But I definitely did for the first few months I was just like, well I don't feel I should be driving [laughs]. Because it had been so long since I didn't I kind of was, it was a bit hard to believe that I could just get in the car and drive again so. But yeah it was nice, I could go and do things. 'Cos I keep my horses about half an hour and there's no buses and no trains I was always relying on my mum to take me there and bring me back. 'Cos she works there I used to have to go with her to work and then spend the whole day and work with her and then come back again so it was quite difficult. So yeah getting my driving licence back meant that I was sort of free to do what I wanted.
Clair had a few seizures while doing exercise so she has cut down on sport. She hopes to get back...
Clair had a few seizures while doing exercise so she has cut down on sport. She hopes to get back...
Clair is doing a volunteering scheme with Epilepsy Action and explains what it involves.
Clair is doing a volunteering scheme with Epilepsy Action and explains what it involves.
And why is this something you want to do?
I think because Epilepsy Action did give me a lot of, I found a lot support on their website, and I went to a, one of their local conferences and it was really interesting and the last person to speak was actually a volunteer and his story was really similar to mine and it kind of, and he had then sort of got to this stage that I was that and decided he wanted to give something back and he'd gone and done this scheme and so after that I kinda went home, read a bit about it and applied and, I got on the course so it was kind of that person who really sort of inspired me to do it.
Clair found it difficult to make friends when she was diagnosed in her first year at Uni. She...
Clair found it difficult to make friends when she was diagnosed in her first year at Uni. She...
Yeah, it was difficult because obviously one of the things is, a sleep you shouldn't stay out late and I found it quite difficult anyway because of my medication makes me sleepy in the evening so I tended not to go out in the evenings so I'd rather go out in the daytime and do things but obviously that's not really the student culture it tends to be sort of go out late and stay out late, so I did find that quite difficult. But my boyfriend actually is he's actually the same as me he likes to go out and do things in the daytime rather than go out late 'cos he works as well as Uni so he's, kind of on the same timeframe [laughs] as me I guess. So we do quite a lot of things and just go out in the daytime and my housemate she's actually, likes to [laughs] sleep as well, so we can, well I mean I think I've, the friends I have made are quite useful 'cos they, they are all sort of the same people as me and they don't like to go out late and stay out late and so we do do other things so. I think it meant that I'm probably made better friends because they'll support me more and they're not just gonna sort of leave me out. But it was hard because I was looking forward to going out and that sort of life but I thing is made me more sensible. And that I don't drink whereas a lot of people do so and I'm glad that I don't because I can see all the stupid things that other people do and so, yeah I think it's, I think it's actually been good in that respect.
Clair's epilepsy was diagnosed in her first year at university. She got a lot of help but,...
Clair's epilepsy was diagnosed in her first year at university. She got a lot of help but,...
So that was difficult but I also had memory problems sort of to begin with but I actually went to the Dean of Students at the Uni because on placement it was brought up, quite a lot on my placements by my supervisors that I had memory problems and that I needed to address them. and the Dean of Students were really supportive and gave me a lot of tactics to sort of address it and I feel now that my memory isn't really that big a problem to me. And that's probably a mixture of the fact that I've had help and also the stress has sort of really been removed as time goes on so. But at the time that was difficult because and it meant I couldn't remember anything and so, it was difficult. But in the second year I kind of picked it up and the second and third years have been a bit easier so, but still, missing that sort of basis makes it a bit more difficult to build upon but I've slowly built it up and my housemates have been really good because they've sort of given me the support and helped me to pick it up and if I've got a problem they'll go over it with me. So yeah that's been, it's been alright.
Clair had her first seizure when training for Tetrathlon nationals and she thought it was a faint...
Clair had her first seizure when training for Tetrathlon nationals and she thought it was a faint...
After Clair found out how to reduce the risk of SUDEP, she made sure she always took her...
After Clair found out how to reduce the risk of SUDEP, she made sure she always took her...
Yeah I would and I know there's a number of other people who I've met through these sorts of things [volunteer scheme] who also feel the same but a lot of parents feel that they don't want their, they wouldn't want their children knowing about it so it's kind of that what age do you sort of approach the subject so.
Now that you have all the information, all the facts about SUDEP does that worry you, scare you?
Not really I don't think I'm that high risk 'cos obviously my seizures are well controlled I make sure I take my medication regularly. It did make me think more about that because to start with I was kind of taking it in the morning and in the evening and that varied day to day, so now I'm a lot more, I take it at ten and ten. And I make sure I do take it and ten and ten but that also helps with my sleepiness as well so [laughs] but I have become much more, sort of set in the times that I take my medication since reading that. So I think that's one thing 'cos I think a lot of people do sort of forget don't really think twice about you know of taking it four or five hours late if they forget so I try and be a lot more careful since reading that, yeah.
Yeah, so in that sense there was really a good benefit from knowing about some of the things that you can do?
Yeah, yeah.