Today is Purple Day; an international day dedicated to increasing Epilepsy awareness and get the world talking about epilepsy, so here goes; despite rarely talking about it, here is my story of life with Big E.
Three times you have unexpectedly leapt into my life. Each time ripping my self-confidence to shreds, just when I was in a happy place and thinking things were going so well. Your timing Big E, sucks.
The first time, I was only five and enjoying being at school and doing my first afterschool activities. One Saturday morning at my dance class, while practising for a tap show, you struck. I can still remember the wracking sobs I cried, cuddled into my Mum as the dance teacher tore strips off me. She had taken my partial absence seizure as a hesitation, thinking I didn’t know my steps. Even with medication, so disgusting it always made me gag, these absences continued up to 20 times a day, singling me out at school as different and odd. My confidence suffered and some of the other kids picked on me. Statistics show 50 million people in the world and 600,000 people in the UK live with epilepsy, but that doesn’t stop the stigma of being treated differently.
By ten or eleven, it seemed you had gone. I came off the medication and was signed off by the doctor. Life moved on and I pushed you to the back of my mind. I sailed through puberty without your interference and at 17 started to learn to drive, just like my friends. However, two weeks before my driving test you popped back into my life. This time absence seizures weren’t enough for you and you took me down with a full seizure. I was out alone and walking down a road. I don’t remember it being a particularly bright day, but I do remember suddenly not being able to see where I was going. Things weren’t dark or out of focus, but the images my brain was seeing were not what was in front of my eyes. The next thing I remember is sitting in an ambulance and seeing Mum and Dad’s car pull up behind it. I was now back to hospital visits, medication and most annoyingly, no driving for two years. I should have been gaining my independence and confidence, but one glance from you and it had all gone. I was told it was Photosensitive Epilepsy (only three in every hundred people with epilepsy have photosensitive epilepsy) and wearing polarised sunglasses that cut out the glare would reduce my risk; although back then they were never the most stylish of sunglasses. I was different from my peers, again.
You left me alone during my twenties. I got my driving licence, I got married and I had a baby, all without your interference, although my pregnancy was treated as risky because of you. In my head I’d gone from thinking of myself as someone who has epilepsy to someone who had epilepsy and grew out of it.
My life moved on, my family and I settled into our village life in France, learning the language and getting involved in our local community. It’s ironic really that just as things were going so well; my blog was becoming popular and the villagers did me the honour of asking me to stand for election to the local council, your black shadow once again crept over me. One of my favourite things about our new life is our vegetable garden and orchard, and working outdoors to produce our own food. But one February morning whilst chopping the pruned wood into smaller pieces, I realised my eyes and brain were once again at odds. What I was looking at wasn’t what I was seeing, but at first I couldn’t work out why. It wasn’t a particularly sunny day, but I admit as the years had gone by I wasn’t as vigilant at wearing my sunglasses as I should have been, especially as when working in the garden they would often slip down my nose. Making my way indoors to get my sunglasses, you caught up with me once more. The next thing I remember was sitting on a bench with my husband and two neighbours all watching over me and asking me how I was feeling.
Your reappearance was a wake up call that made me realise I’m not as invincible as I thought I was. Thinking back over my life I now recognise other times when I’ve had the visual wobbles but thankfully they came to nothing more. I no longer class myself as someone who had epilepsy, but someone who is photosensitive and that can lead to a seizure if I am not careful. Now I never go out of doors without my polarising sunglasses on, but I still don’t find it easy going out alone. It is the anxiety of the not knowing and the what-ifs that I’ve found the hardest thing to come to terms with. I’m more cautious and my self-confidence has dipped, despite reaching a time in my life when I am fitter than I’ve ever been. I’m not going to let you take away my cycling, but I have accepted that like swimming in our pool, cycling is something I won’t go out and do alone. Even gardening has limitations for me and it is very frustrating that an hour spent weeding is all I can manage. However like any mother, I’m happier to have you back in my life if it means you will leave my son alone. I also consider myself very lucky not to have had many seizures and to now be over two years since my last one, lucky to know my triggers and how to avoid them and lucky to have friends happy to walk the dog with me.
I am also very lucky to have an amazing husband, who has not only had to pick me up (literally) after a seizure, but his strong arms have held me tight when the visual wobbles have reared up and despite us both feeling my body twitching, he kept a full seizure away. I trust him with my life.
This July Adrian will be cycling 100 miles (160kms) in one day when he takes part in the Prudential Ride London Surrey 100. Much as I love cycling, this would be one step too far for me, but while Adrian cycles the route wearing the Epilepsy Action jersey and raising money to help others live their lives with epilepsy, I will be in London volunteering on their stand and cheering on their riders. If you want to know more about the work Epilepsy Action do you can visit their website here.
£10 could give 50 people information about first aid for seizures – helping people with epilepsy be safe in public.
£20 could equip a new volunteer with resources to raise awareness of epilepsy in their local community.
£30 could help the Epilepsy Action experts support five people newly diagnosed with epilepsy, providing one-to-one advice when it’s needed most.
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Please feel free to share this post. Thank you.