A Day in the Life of Sian: Living with epilepsy [video]

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Video Transcript

A Day in the Life of Sian
Irvine Harbourside

I was 16 when I was diagnosed with epilepsy, and I'd been having test done since I was 15. I actually got my diagnosis like the day before my 16th birthday.

Normally I have my seizures in the mornings. So normally I wake up, and I'll be like don't feel too good, and I'll get really hot and kind of tingly. I'll be quite droopy. I'll get heavy, and I'll probably put my head down. I'll close my eyes, and I'll go really still. I look like I've fallen asleep, but normally I can go quite a few months without them. But then I can have weeks and weeks where I'm not very well.

My epilepsy is sometimes hard for people to understand. The type of epilepsy I have is temporal lobe epilepsy so it affects the part of my brain just behind my eyes. For me I have partial seizures, but a lot of people think oh, that's not like a full seizure. It's not a real seizure. It's really important for me that people understand that because it means you can help someone with epilepsy but also that you can understand what they're going through.

I get a bus to uni. It takes an hour and a half! Some things—it's worrying getting the bus myself. If I have not been well then it can be quite scary, but it's not always suitable for someone to go with you. So a lot of the time I just have to kind of go on with it, and I try and cope. It's happened before that I've had seizures on the bus, and I had to kind of stagger off and try and get myself to somewhere.

I'm not allowed to drive. In the U.K. you have to be seizure-free for a year to drive, and I haven't been seizure-free for a year. I left school just after my diagnosis because of bullying and a lack of educational support.

When I was first diagnosed I didn't think that I was going to get to uni. I was told by a careers advisor I wouldn't get into college. I'm currently studying a BA in social work, which is a bachelor of arts, and it's a 4-year degree so it's an honors course.

Having epilepsy has definitely affected my social life. I really enjoy being in uni. I don't think I've embraced the student life yet.
I don't go out on any wild uni nights. I choose not to drink a lot like alcohol because of the epilepsy.

I wish that I didn't have to think about things as much as other people and have to plan things as much, but when I do go out I spend time with friends or with my family then I enjoy it, and I make it the best for me and for my situation, and that's all I can do I think.

4:00 pm Finally home!

I stopped treatment after a year as I struggled with depression. I was quite down. I was quite depressed kind of thing. I could be quite moody, and I think it affected my memory as well. I wouldn't be able to concentrate as well. Sometimes I would just forget things as soon as I started seeing them. So I actually feel better off my medication now then I did when I was on it.

My family always support me and are very encouraging. They've helped me in every way possible. My little sister's just been amazing.
If I'm upset she'll go get me something, or she'll come and give me a cuddle or paint my nails or just the silly things that people take for granted. Sometimes that's what you need. My mom and dad have taken on so much. They've always supported me to do the things I've wanted to do. I couldn't be at university, and I couldn't do all of my volunteer stuff without them because they're just—they're like my backbone. They just—they keep me going. They hold me up. I'm really lucky to have them.

I volunteer every week for Irvine Girl Guides. 6:45 pm Dad drives me to Girl Guides. My guides—they're a bit mad, but I love it, and it's great fun. I'm hoping that by the activities and the things that I do with them that I'm helping them to grow up to be nice young women and to be effective citizens. It's great to be a part of something like that. So doing my volunteer work I think was a way of giving myself a focus originally and kind of deflect from me, from my problem, but I just have grown to love it so much. I hope that by doing it I'm contributing to society, and I'm contributing to other peoples kind of wellbeing or happiness.

I have many hopes for my own future. I think it'd be nice to be married and have kids and stuff like that. Even though I've got epilepsy and even though things are a struggle for me then why I shouldn't I have those things everyone else has? There's the battles in everything. It's like how is my life going to be? Will I be able to get a job? Will I meet someone that will accept me for having epilepsy? Will it get worse? Will they find out it's something different? Will they put me on medication that makes me feel terrible?
Will I ever be normal? You have to think about those things because they're a reality, but at the same time they're not here yet so let's not worry about them until they get here.

I think Sian is an amazing person. I'm so proud of her for being able to cope with her epilepsy the way she does. She's been dead brave and like she just gets on with life. She's such an inspiration to everyone. We love Sian. Thank you for watching! Love Sian xxx