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of everyone affected by epilepsy

 

“Epilepsy’s not taken over me. I’m just a girl who has epilepsy.”

Symptoms and diagnosis

Symptoms and diagnosisAll I remember in my teenage years is being angry all the time. I don't really recall the seizures a lot, to be fair.

There was no history of epilepsy in my family. That's why it took us all by complete surprise. I'd never even heard of the word epilepsy.

I was 14 when I started having the seizures, but by the time I was diagnosed I was 17. They misdiagnosed it three times. At first they thought it was panic attacks, then serious migraines and then chronic fatigue

They were baffled at one point because I just kept collapsing unconscious. They though that my knees were giving, so they wanted to take me in and drill a bit of my knee out! All of this time, no one ever thought to do any type of neurology.

I used to bunk off school to go and sleep! It definitely had an impact on my education. I was set to get all As and A-stars in my GCSEs, but they moved me down the classes and started saying I was going to get Ds and Es. All because I was in this tired blur. I failed maths because I didn't turn up to the exam. The whole day I was just sleeping. Most of the time I didn't know what day it was. I didn't even get to go to my school prom.

We went to a GP when I was probably 16 or 17 and he said it could be epilepsy, but that it was so incredibly rare. But we pushed it and got an EEG done. If we hadn't have kept going at them I don't know if we would have got to a diagnosis of epilepsy. We were worried it might be a tumour or something. Mum had to ask for a neurology referral.

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The EEG confirmed I had abnormal brain activity. The letter said to contact the emergency neurologist as soon as possible. Me and mum went in there and we were holding hands and shaking in anticipation of what 'abnormal' might mean. They said, 'You've got epilepsy,' and gave me tablets. But the seizures carried on. That's when we asked for a second opinion. My stepdad filmed me having a full tonic clonic seizure. When we showed that to the neurologist he said straight away, 'That's epilepsy.'

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Trial and error

There was a bit of trial and error with the drugs, and being a teenager as well there were hormones running wild. It must have been so hard for my mum and stepdad, I don't know how they didn't kick me out.

Symptoms and diagnosisThe neurologist said epilepsy was something that could be controlled, that you could grow out of it. He started me on a combination of tablets and things started to slow down. Not controlled, but it was a lot better. I'd say the side-effects are worse than the epilepsy sometimes. At the time, I just thought, 'I have to take this poison it will make me better.'

Until I was about 24 I never accepted having epilepsy. I just wanted to ignore it, to put it to the back of my head. I was really defensive.

Even at my age, I can't do a lot of things unsupervised. My mum and stepdad still have to cook because heat's a big trigger for me. There was one time I was cooking and fell to the kitchen floor with a knife in my hand, so that was the last time I did that!

I used to think I couldn't do anything at all, and this is when I got really, really depressed. Really anxious. And I would just lock myself in my room, keep the curtains closed all the time. I didn't want to see anyone. I'd eat upstairs, live upstairs. Ever since my medication started my weight has slowly built up as well. Knowing I was already overweight I got really annoyed with that.

I've had seizures so many times in public. So humiliating. In shopping centres, I even had a seizure on a coach while it was on the motorway. In the doctors, a lot at work. On the high street. I went out for a run one day and some member of the public found me by the side of the road. I was just trying to do normal things.

DepressionI've had really bad depression all the time I've had epilepsy – we didn't really put two and two together. It actually took mental health intervention to help in the end. It really helped to have someone say, 'You haven't got a mental health problem, you've got epilepsy.'

When I was about 23 or 24 one of my meds started to get iffy. I was down to about one seizure a month, but the side effects can be quite aggressive – concentration, behavioural problems. I got so depressed I had a couple of attempts at my life. I didn't want to be here. I just thought, epilepsy's taken it over.

I don't think I'd be here if I didn't know about Epilepsy Action. We had a pretty nasty time a few months ago where I was having a lot of seizures. I refused to take my tablets. I just said, 'Why should I? I'm having loads of seizures anyway!' I was having these really dark thoughts. Mum was terrified, but I was like, 'I can't take them anymore!' I broke down.

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And that's when I called up the Epilepsy Action Helpline. They're actually the people who referred us to the mental health team. We'd called 999 too because I was scared I was going to do something stupid.'

At my worst possible time, the charity was there to point me in the right direction. I wouldn't see myself here if I didn't have Epilepsy Action.

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Acceptance and looking forwards

Local supportSince we've been in Essex, Liz from the local Epilepsy Action group has kind of scooped us up!

When we moved here we Googled 'local support in Chelmsford' and it said there's a local coffee and chat.

I was really apprehensive, but Liz was like, 'Hi! I'm Liz, I've spoken to you on the phone!' And I was just really happy all of a sudden. She introduced everyone and they were so friendly! There was about 12 people, just sitting having a coffee. They didn't actually talk about epilepsy a lot, it was friends going for a coffee.

I felt so comfortable with these people. I just sat there and I felt really relaxed. My anxiety was still there, but I felt really happy. After that meeting I went away buzzing. I was like, 'I met other people with epilepsy – there are other people in the world with epilepsy!' I couldn't believe it.

Liz contacted me a lot, she'd always pop me that lovely message, sometimes even just 'Hi' or 'How you doing?' Those messages make a huge difference.

We'd always felt like it was me and the family against the world until Epilepsy Action got involved. It was like a community.

When I came to Chelmsford I started using the EA helpline a bit more too. It's amazing. I found out about the diets, about triggers, about the vast range of medication that's available.

There's little scripts of how to talk to your doctor, which helped me and gave me confidence. I had a free bus pass too, which Epilepsy Action told me about. I didn't realise I was entitled.

Epilepsy Action also helped with the day-to-day aspects of epilepsy. Advice about things like a day bed downstairs and the ramp at the front door to help get in. We've got slide sheets to help getting me on my side. Getting my bed in the right place upstairs, going downstairs on my bum. We've got a stool for me to sit in in the shower because I've had seizures in there.

If I didn't have Epilepsy Action, I wouldn't know anything about this. I'd have suffered. Coming from not having any information to suddenly having everything, it felt like I'd won the lottery.

There's the emotional side too. Epilepsy Action helped me to be comfortable enough to be open with all of my family.

I wouldn't see myself here if I didn't have Epilepsy Action. That really bad burden I put on all my family and friends just eased up. Because I was so hard on myself, blaming myself for giving my friends and family so much worry, for ruining anyone's life who came into my life. That used to be my way of thinking. I felt like such a drama queen.

But speaking to Liz and the group, they said, 'Sarah, it's not your fault. You didn't ask for this.' And slowly that got into my head. That's when I started getting to acceptance. I felt more comfortable. I feel in complete acceptance now. It's taken ten years. And more! Since moving here and finding the group, now I say, 'I've got epilepsy, yeah.' And if people want to talk about it I say this is how it is, and this is what you do. I've got loads of help and I'm really forward with it now. I've accepted I've got epilepsy, but it doesn't define me. Epilepsy's not taken over me. I'm just a girl who has epilepsy.

I wish I knew about Epilepsy Action when I first had epilepsy because we all panicked and didn't know what to do. It seems so scary at the start and you don't know what to expect. It really isn't as scary as it seems. The important thing is to be very positive. It may take a while and you have to bear with it, but there's always light at the end of the tunnel.

There is so much help out there. I would highly recommend Epilepsy Action because they are very supportive. I just hope that the resources stretch, so there's not another little girl somewhere that's like, 'What do I do??'

Help more people get the resources they need to take control of their epilepsy.

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Event Date: 
Friday 22 June 2018

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