“But you don’t look ill?”
That is a remark I get from loads of people when I explain I live with Epilepsy. The truth is the majority of the days you cannot even tell I have it – you can’t tell anyone has it unless they have a seizure and that is what makes this condition just that little bit more frustrating.
I was diagnosed with epilepsy during year 8 at school what I was yet to know is how much my life would change from the moment I had my first seizure. For the first couple of months I was having seizures weekly they then started getting further and further apart once I was prescribed anti-epileptic drugs I was only getting them once a month, if that. However, even though my seizures were declining when I eventually had one they were a lot worse than the ones I had weekly. We discussed this with my specialist who told me that in terms of how ferocious the seizure is I am better off having them frequently as they are less angry than those that a few and far between.
On May 30th I had been two years since I had my last major seizure, yes I have had little vacant episodes here and there but none where I am violently shaking. I was starting to wonder if I had grown out of the violent seizures and if absence seizures were all I was going to have now then I could happily live with that. However, the excitement was short lived.
On the 2nd of June as I was brushing my hair everything went black I was having a grand-mal Seizure. According to my other half – Ryan, I fell backwards unsure whether I had lost consciousness followed by generalized body stiffening and then I started to violently jerk and into a deep sleep… During the jerking phase I had bitten my tongue and blood was coming out of my mouth and it was sounding like I was struggling all of which required an ambulance and my emergency medicine so Ryan had to put me in the recovery position so that I didn’t choke on my blood and go seek help from my mum he was also covered in blood and my mum can’t stand the sight of blood so she was no help (she admits that) so Ryan was looking after me and stripping the bed sheets at the same time!
Within a couple of hours I was starting to come around however I still wasn’t 100%. It was soon 3am and still no ambulance but I totally get that the NHS is extremely over stretched, and that there will be many, many more people who were in need of that ambulance more than I was.
All that is left to say is a massive thank you to Ryan and all he does for me, he has only ever seen me have one before this one and this was on a whole new level but he managed to keep a level head and support me when I was at my weakest. It is so easy for people to freeze when faced with something like this but he made sure that I was safe and that I received minimal injuries. The outcome could have been much, much worse if it wasn’t for his quick actions. I owe everything to him and no amount of words will ever thank him enough.
So please, when someone mentions their hidden illnesses please, please don’t use the phrase “But you don’t look ill” because you can guarantee that deep inside they are fighting a never-ending war, and this doesn’t just apply to epilepsy it applies to many, many other conditions too.