As many of you know, I have what they now call an invisible disability. I’ve spoken about this many times before, but I try not to let it define me or allow me to become the ‘blogger with epilepsy’. Yes, it is part of me, but it doesn’t make me who I am.
My condition was diagnosed 7 years ago, which feels very weird saying that! I had unknowingly had the condition for quite some time, but it had gradually gotten worse. The issue I had was, I couldn’t quite recall what was happening, so trying to explain something that was super hazy was a big task! I won’t go into the nitty-gritty details, but you can read one of my blogs about it here and about it here, you can also watch my story here.
I get 100’s of emails worldwide about people reaching out to me who have watched my youtube videos, saying they felt the same and they’re glad not to be alone. I couldn’t find anything much on the internet about my condition, so I made that change and spoke about it. But, I’ve only ever chatted about how it was and the diagnosis process, not the now? What happens after your diagnosed? How do you live? How do I live?
Living with the condition
I am lucky to live a relatively ‘normal’ life with my condition. I have to really look after myself though, and there is a lot of people who just don’t get it. Like, I can’t get tired or stressed, and some days I feel spacey, often I get migraines and after seizures for the next 48 hours I feel rubbish and want to sleep. However, because you can’t see something physically wrong with me, you think I’m fine. I’m not. It’s a constant evaluation on a daily basis about my choices and how they’ll affect my body and my epilepsy. This right here, is why I want to raise awareness.
I travel loads, travel makes me so so happy, if I could travel for my career it would be the best thing ever, and I do travel, with my condition too. I’m showing people you can still live you just need to be realistic, be safe and enjoy life. I am an active girl and once I pulled myself through depression post diagnosis, I did my first triathlon for an epilepsy charity in 2014. I was hooked. The focus really helped me, and being active was a great thing to drive me to keep going. I have had seizures during running races, where I ‘think’ the stress of racing would get on top of me, but I now am aware of it and can get myself in a safe place. But I also know my limits. With this in mind, I’m actually going to slightly push my limits, and do 12 in 12 challenges to hopefully raise awareness to my invisible disability.
Taking on my next challenge
From June 2019 for 12 months, I’m taking on a variety of fitness challenges to show that invisible disabilities like mine don’t need to hold you back. Some people will argue I shouldn’t swim or be out on a bike, but I have risk assessed my disability. I never swim alone, I never cycle long distance alone. I am sort of blessed with an aura before a seizure, meaning I can get myself into a safe place. So yes, 12 in 12! I’m doing big hikes, long runs, trails, triathlons and all sorts across the globe. I’ve teamed up with Epilepsy Action for this, and whilst I’m not fundraising, (because that isn’t what I’m doing this for) I welcome donations to them. This charity really helped me when I was first diagnosed.
I might need my hand holding a bit, so keep your lovely emails coming in, please message me as it all keeps me going. I’m videoing each challenge and make sure you bookmark my blog for my challenge updates! Obviously, I’m still planning and booking my races, so any suggestions would be amazing.
To find out more about absence seizures like mine, follow the link to the Epilepsy Action website here.