Sarah’s diary is the true story of one person’s journey through epilepsy diagnosis.
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Thursday 7th February 2008
I can’t believe what’s happened. WORST. DAY. EVER!!!
As if crashing my new car wasn’t bad enough, it was totally my fault and I have no idea what happened. Guess I must have banged my head or something. At least no one was hurt anyway. That’s what I’ll keep reminding myself every time the cold, cringing sweat of horror and embarrassment overcomes me again. No one was hurt. The scariest bit is not being able to remember it. I mean, it’s a fairly momentous thing, isn’t it? I felt really proud to be driving at 17, but now I don’t think I’ll ever get back in a car again.
Tuesday 15th April 2008
Ugh, horrible day. Late for college AGAIN. Everyone there is just so annoying. My tutors are on my back for being late all the time, and even my so-called friends just wind me up. They’re always on at me, saying I’m angry and that I’ve got ‘attitude’ or I’m ‘troubled’ Whatever! What do they expect if they keep getting in my face?? I just want to sleep, I can’t be bothered with everyone telling me what to do all the time. Idiots.
Thursday 17th July 2008
Well, that was interesting. Ever since the crash I’ve been freaking out about not being able to remember what happened. I felt pretty stupid going into see my doctor and saying “my mum told me to come ‘coz I had a car crash I can’t remember and I’m really vacant all the time”, but – amazingly – he took me totally seriously. Especially when I told him about feeling sick and never being able to remember anything. He must think it’s something pretty bad too – he’s referred me to see a neurologist. How scary is that?? You go in feeling rubbish and tired and come out with a referral to a brain doctor! Totally ridiculous. But if it gets everyone off my back, whatever.
Tuesday 9th September 2008
Well, I was right about never driving a car again, but I always thought it would be my choice! Shows how wrong you can be. I never saw THIS coming - my neurologist is convinced I have epilepsy!
From what I’ve been able to find out, that doesn’t necessarily mean I’ve been hurling myself on the floor having massive fits then forgetting all about it. But - if she’s right - it’s just as real and it IS going to change my life. Like not being able to drive again. Or go to uni. Or get a normal job, have kids… Wow, one afternoon and suddenly I have no choices left in life. What the hell is happening to me?
Friday 17th April 2009
I don’t think I’ve ever felt quite so ridiculous as I did today. The MRI scans and EEGs at the hospital have drawn a blank, so I had to go to work with hundreds of electrodes stuck to my head! What this is supposed to achieve when all the others have failed I don’t know. Thank God there weren’t many people around! Anyway, apart from that, a totally normal day, so I’m not expecting much from the results.
Wednesday 13th May 2009
Got called back to the neurologist today – turns out the EEG results show I DID have a seizure at work. For 30mins at 10.30am – while I was in a meeting! And many others that day and night. Apparently I have “complex partial seizures which originate in the right-hand side of the brain in the temporal lobe.” I think I might just call it ‘epilepsy’. As much as I’m relieved to finally have the diagnosis, I’m so scared. All those fears about losing my choices in life are coming true. Why me??
Monday 20th July 2009
Wow, my epilepsy nurse is AMAZING! I saw her again today, she makes me feel so much better. I was really down after all the tests and uncertainty. Even the diagnosis felt like someone had stuck a label on me and taken away all my choices in life. When I go to see my nurse though, we just plan our way round the problems. I felt like I’d lost my independence when I realised I wouldn’t be able to drive anymore. But my nurse knew about being entitled to a bus pass, so now I can travel about of my own free will again. She’s even helped me begin to control my seizures, and I haven’t even started the medication yet.
Monday 19 May 2014
I read today that in the UK alone 87 people are diagnosed with epilepsy every day, and that only 45 of those will become seizure free. Put like that, I know I’m one of the lucky ones. I got my seizures under control pretty quickly, and my nurse helps me to manage my life and expectations to avoid things that could trigger a seizure. Yes, my symptoms were bad and I lost a lot of friends and fell out with my mum for nearly two years. But now I’m happily married with two gorgeous kids. I get on great with my family – I’m even driving again! I still take it badly when the forgetfulness and confusion I experience make people think I’m thick or scatty. But each year I see more of myself. Thanks to the help I’ve had and the people around me, I’ve got a plan. I can see a way through, and I’m going to stick to it.
Every day, 87 people in the UK are diagnosed with epilepsy. Like Sarah, their lives will change. Together we can help them put the pieces back together.
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Sarah is an Epilepsy Action member and volunteered to tell her own story after reading the Pregnancy Diaries in 2013. Her diary covers the main events in her journey, showing the emotional side of her experience from initial symptoms to life as a working mum with epilepsy.