I Am Not My Illness

Wednesday, 22 March 2017

As Epilepsy awareness day is fast approaching (March 26th) I thought it was about time I whacked another Epilepsy post up. There's a lot to be said about this condition, you could never compare two people with the same condition because I can guarantee there's a lot of difference between what each person suffers with. But this one will be a little light hearted compared to my next.

I've never let the condition take over my life or define who I am, maybe that's why I can look at it more light heartedly. Luckily for me, as much as I do suffer every single day with symptoms, I'm still able to live a normal life. I work, I go out and have fun. Yes, I do need a rest every now and then but I'm able to control my condition and not allow it to control me. Yes, I know I'm lucky. Finally I am on the right dosage of medication for me and get to drive again in a month. Which is great. 

As much as I'm all for Epilepsy support, I'm so not okay with being called an Epilepsy Warrior. Like honestly, don't ever say it near me. Yeah, sure some people can get away with it because they really work towards awareness and what not. But I don't really do that much except from live with it. If I feel rubbish I'll nap and not say it has anything to do with my condition. On a good day, I'll go shopping and I would definitely not be seen running a marathon for donations. The furthest I'll go is writing a post in my fluffy jammies.

If I tell people I'm out with that I'm Epileptic, fear just appears in their face. I mean, fuck all will happen to you while I'm with you. I'm outside and doing things because I know I'm okay. No, flashing lights won't make me seize. No, it's not just dropping to the floor and convulsing. Yes, I can drink alcohol if I want. No, I won't pass out while holding your baby. There's about 40 different types of Epilepsy, not all of them involve flashing lights and shaking on the floor. I actually have 3 different types of the condition.

With having a condition that effects the brain, I get days that are just full of brain farts. Like not even able to spell a word, or missing words out of sentences because I'm not all there. I have no idea how my friends have stayed in a group chat with me. I'm forever forgetting things too. Like..did I put a bra on? Why did I come into the kitchen? Oh tea...Nope it's cold now.
Memory can be massively effected when you're Epileptic. I remember very little about my childhood, when the rest of my family have really vivid memories. I can go on a day out and love where I am, then be reminded I've been there before. There's probably loads of funny stories I could tell but have completely forgotten. In reality though...cheap date because I'll probably forget the first, so no out doing the first would be needed. Silver linings and all that.

Something that was drummed into me early on in my diagnosis, is that I needed to wear Medical Alert jewellery. And you know what? It's really fucking ugly jewellery. It took me so long to actually buy myself some because it's also a good money making business. Which is a massive liberty. One night I was looking at loads of online sites and decided I just wouldn't wear any alert jewellery. Yeah its important, but I'm also 25 and still like to look normal and not have a giant red bracelet on, or a massive dog tag that read 'EPILEPTIC'. Luckily, Etsy is full of cutesy little independent businesses, including jewellery makers. Now I have a selection of nice alert jewellery.  

Don't ever ask the internet about new medication you might be getting changed to. I almost didn't change my meds because of somethings that were said to me and what I was warned about.. Also, people are more inclined to tell the bad stories. Luckily, I'm all good!

I may be living with an incurable condition which will more than likely effect me in many ways during my adult life, but I'm okay with it!
Emily-May x


  1. This is such an interesting read. Both my sister and my best friend are epileptic and it's interesting how so very differently it affects individuals. I agree that epilepsy (or any illness for that matter) doesn't define anyone - the majority of the time I actually forget that my best friend has it. Great post xx

    1. Oh do they really? I don't actually know anyone else personally that also has it. X

  2. This was so interesting to read. I've never met anyone that are Epileptic so this was worth a read as it's all new to me.

    Loved the read xx

    1. So many people say that they know nothing about it, glad my little blog is getting it out there x

  3. Such an interesting read, I know a bit about it but didn't realise there were quite so many different kinds!! xx
    Holly ∣ Closingwinter

    1. Many different types, triggers, side effects. There's a lot to it x