I’m 18, coming on 19 and I have been diagnosed with epilepsy since my 18th. All I can think? ‘Holy crap it’s only been a year’.
This is not a pity story, it’s my life and a part of millions of others also in the world.
Oh and please do refrain from being an ass about it, you’re only another person ruining faith in humanity. Thanks.
I have tonic-clonic seizures, (there are thousands of different types), which means my seizures aren’t caused by flashing lights, contrary to popular belief. The main causes that my family, neurologist and I have noticed is drinking, emotions literally running wild, stress and sleep deprivation. During my final A Level exams they were occurring at least 3/4 times a month, sometimes more, on A Level results day because I was incredibly emotional (in a negative way), then twice at university. There’s no cure, only drugs every morning and every night – which until you get the right dose or type of drug, means it can still take years to control the seizures.
My last fit was just over a week or two ago. I have no idea what caused it and it was honestly one of the worst fits I have had. I’ve just about recovered, my tongue is still bitten up as a result still. But, at least I can eat and drink without wanting to cry because of the damage and pain it causes.
When a seizure happens; with me (everyone is different), I black out, I’m a dead weight, I scream, I always bite and cut up my lip and I always, no matter what – am so physically and mentally drained from the fit that I have to stay in bed, sleep, eat sugar and do everything to get my energy back up. Sometimes theres the warning of feeling dizzy – and even then a seizure may or may not happen – and sometimes theres no warning.
Example being when I’ve been in the shower (twice now) and when I’ve been eating. If it wasn’t for my sister, I wouldn’t be writing this, she was there and got the food out before anything could happen. She saved my life. She, my absolutely amazing and strong mum and my closest friends have always been there for me, seizure or no seizure. Honestly, having the support/knowing they’re there for me is something I’m forever grateful for, and I wouldn’t trade that for anything.
My Experience So Far:
It’s been such a rollercoaster past year. It’s been tough. There are forums on the internet yes, you’ll always have family, loved ones and friends yes, but there’s nothing worse than feeling so alone. You feel alone because before 18 there was a list – of all the amazing, big things you could do once you turn the big 1-8, including the main following:
- Drinking (legally)
- Driving (17 but still counts)
- Staying out as late as possible without fear of fits in every circumstance
- Staying up as late as possible without worrying of having sleep deprived fits
- Going on holiday without hesitation
- Tattooing without hesitation or worries you’ll have a fit in the chair
- Getting as stressed as you want to without harm
- Being carefree, wild, not thinking about the ‘what ifs’
It was the day after I turned 18, after clubbing and drinking from celebrating. I was in hospital for 4 days & suddenly restricted from all the amazing, carefree bullets on the list. My life was full of ‘what ifs’ & I walked out with a bag of epilepsy drugs to stop my brain from getting its wires crossed.
Did the meds help? Nope. I was increasing my dose every month, and I’m still doing that now. But now I don’t feel so lonely, everything I thought that was taken away/couldn’t do: they were still there. I just need to limit myself. You know, be smart about it. I could still go on holiday, travel as I’ve always wanted to. I could still get tattoos. I could still stay up – I’d just have to sleep the whole of the next day haha. The driving, drinking and stress levels howrver were a no go zone. Imagine an 18 year old girl being told she couldn’t do exactly what every other person her age was doing, that she’d be an outsider again, after feeling like an outsider the whole of her life previous to epilepsy.
Can you imagine that?
This isn’t a pity story, I wanted to share my story, for others out there like me. I didn’t have any conditions a year ago, and it’s only just now, that I feel I’m me: with epilepsy a part of that. It’s not been easy, like it’s not all peachy. as soon as I walk in to the doctors, I break down. My GP tends to have that effect of people haha. It’s hard, and I have a long way to go still. But I want to help others – I know I’ve only had it a short while. I mean, I’m still going through the process! But I felt so lost, about so much, that has happened in an incredibly short period of time. I want to help others who are/have/will potentially go through the same.
One way of helping others? Running the London Marathon in April 2018.
Yes, that’s right. I’m the girl that has lung/breathing problems and I’m going to be running the marathon in 2018 for the charity: Epilepsy Society. It is an incredibly amazing charity for everyone, not just epileptics, but also the people surrounding the epileptics. I know that without them, their website, my family…I would have probably gone insane by now.
Running the marathon may not even be possible in 2018, it could be 2019 or 2025, or every year from 2018. I don’t know, but I’ve promised myself that I will run it. It’s not just for the charity, to gain more widespread attention about epilepsy and how incredibly common it is (hint: 500,000 in the UK only) It’s also for me. I want to prove that even with this life-long change, I’m still strong and I’m still capable of everything that non-epileptics can do.
Other ways? Skydiving, Running and Cycling Fundraisers, Treks and Walks and even independent fundraising events. Running the marathon is only a crack into the surface.
Furthermore, I’m getting involved and raising awareness for Purple Day, the 26th March 2017. Purple Day is the international day for epilepsy and falls on 26 March each year. People around the world come together, raising vital funds and awareness of the condition.
The history is amazing, it was created by a young girl, Cassidy, from Canada in 2008, for awareness about the condition and reassurance to people with it that they weren’t alone: which I have felt ever since I got diagnosed. Why purple? Cassidy chose the colour purple because lavender is recognised as the international flower of epilepsy – I did not know this until about a month ago. There’s websites I have linked below about everything and I will be writing many many other posts for this subject in the future.
I’m no longer hiding myself. I’m going to live my life the way I’ve always wanted to: freely and without fear. It’s kind of crazy but I am so much stronger now, with epilepsy than I’ve ever been. I don’t take life for granted and never will I again
Thank you for taking the time to listen to someone incredibly personal, not just to me, but to millions around the world.You reading are a kind, whole-hearted gem. Stay like that, you are a gift to human kind.
Hannah Samantha x
p.s: there is the potential that I will be getting lavender as a tattoo on my body, to forever showing my dedication to supporting others like me & remind me to always have faith and remember that even in my dark moments that I am not alone / sorry mum! I do love you sincerely x
Epilepsy Society: https://www.epilepsysociety.org.uk
Epilepsy Action: https://www.epilepsy.org.uk
Epilepsy Foundation: http://www.epilepsy.com
Purple Day: http://www.purpleday.org