I am writing this blog in the hope it will cut out the mumbo jumbo that epileptics can be bombarded by when they are first diagnosed, help people to look on the brighter side to this pain in the jackzee condition with awkward situations Epilepsy has landed me in and to educate others to what Epilepsy actually is
Warning this programme contains flashing lights
We have all seen this at one point or another before a programme right? Well that’s for ‘us’ epileptics, a pre-warning if you like, for us to be aware that there may be a series of lights that can cause seizures, fits or whatever you want to call them. To be honest it gets on my nerves a little bit. Fair enough it needs to be done for those that suffer from photosensitive epilepsy like me; but I personally feel that due to this and from my own experiences it makes everyone associate epilepsy with flashing lights. NU-UH, INCORRECT, WRONG! In fact there is a whole spectrum of types of epilepsy, photosensitive is just one most people are familiar with, there are also many ‘triggers’ to epilepsy: stress, lack of sleep, alcohol to name just a few. Epilepsy can start at any age too. My ‘epilepsy adventure’ started at the age of around 13. As you can imagine being a geeky, self-conscious, self absorbed, stroppy teenager it was the end of the world.
Like any teenager on a Saturday morning, I was slobbing out on the sofa in my pjs watching the CBBC channel with my older sister Charlotte. (Charlotte a person with a pivotal role in this story, a great sister but not a great person to have in a crisis!). So there we were pigging out on the sofa watching ‘Cavegirl’... a sequence of flashing photos came on consecutively...little did I know at the time this would cause me to have a seizure or ‘fit’ as some call it. I didn’t feel anything, no pain, nothing and it struck with no warning. In fact I don’t recall a thing, not one iota. All I know is what I have been told.
I let out a loud screeching/roaring sound is what I can only describe it as (something which apparently I do before any fit I have and still to this day scares the living daylight out of my poor long suffering sister!) I then went into what I now know as a ‘Tonic Clonic Seizure’ or big fit as my Mum and Dad call it. I fell unconscious and started to fit violently, the dramatic eyes rolling back the works...I’ve always been a bit of a drama queen. I think it was at this point my sister knew I wasn’t joking and began to panic.
She shouted to Mum who was in the shower and Charlotte quickly dialled for an ambulance, in the meantime I was still unconscious and oblivious to the drama that was unfolding.
It wasn’t long before the ambulance came and I was driven away to hospital. I started to regain consciousness, but all I can remember is being frightened. I had no idea where I was, what had happened and why all this fuss was needed. Everything seemed to be speeding up and I couldn’t keep up. My head felt like a bomb has just gone off. I can only describe the pain as if my brain is pushing on my skull, desperate to break out. My entire body was aching and it was difficult to even raise my arm, it even hurt to raise my eyebrows to make any expression! Believe me its true when they say its zaps your energy just like running a marathon, I’ve done both and would pick a marathon over a fit any day of the week. (I had to boast about my marathon somewhere!) Your whole body aches, you have a headache like no hangover or party from the night before can compare, time passes and you don’t know how it goes by so fast.
So that was my first fit! I wasn’t really worried; the hospital was alright, the nurses were kind and I had my Nintendo DS to keep me occupied. The doctors all thought it was a result of hormone changes in my body and after two days of being in hospital I was allowed to go home.
After a couple of weeks passed I was booked in to have an EEG (electroencephalogram) to monitor my brain activity. I was quite excited actually, it was for a short time anyway, nice to have so many people paying me attention, I’d never any tests before, sounds strange to be excited but it’s true. That soon changed when I stepped into the room where the EEG was going to take place. Now at 22 years of age I no longer find it scary. But I empathize with those who are having their first EEG scan. It is a scary and daunting process. A small room where wires are glued onto your head and connected to a computer, like a robot! A big light is placed right in front of your face. I sat in smack bang in front of this big light. The room was dark and the lights began to flash, various patterns, colours and speeds, from various distances. It was still pretty scary for a 13 year old to sit through though, well anybody of any age really! It didn’t hurt, it fact it was annoying! Flash a torch into anyone’s eyes and it soon becomes annoying! All I could see was wiggly lines bouncing up and down on the computer screen, these wiggly lines were actually my Brainwaves; quite amazing when you think about it.
Around 2 weeks later I had a consultation. ‘You have photosensitive epilepsy.’ My heart literally sunk, I could feel a lump in my throat and felt stupidly hot. I've always been the clown in my family, but I could feel my eyes watering; trying not to blink to stop the inevitable tears rolling down my face.
I know this all sounds a bit doom and gloom, but I’m trying to be as honest as possible. I think when you’re first diagnosed you do feel you’re the only one and woe is me and you have every right to be. It’s a lot of information to digest; epilepsy affects many aspects of someone’s life. One minute your fine next you have to deal with the title ‘epileptic’ and the prospect of being on medication for the rest of your life. It’s only normal to feel like you have been kicked in the teeth.
All I can say is have the moment, that day that week. It will get better. You will learn to come to terms with it. Many people in this world are too quick to cling on to the negatives. But it’s true what they say, there is always someone worse off and always will be. So the only choice is to hold your head high and carry on. Yep I’m epileptic and always will be, annoying? Sure. But why should that determine who I am. I’m Aimee, always have been always will be.