Living With Epilepsy.

I’ve always loved being creative. Drawing squiggly lines on my face as a kid and playing around with anyone else’s makeup. At 17 I turned my hobby into my career. I’ve been working as a makeup artist since then. I’ve always worked hard at it improving my skills year by year.

In January 2016 I had my first seizure and it was a bad one at that. The doctors didn’t know why I had one, stating that I had had too much to drink even though my blood alcohol levels were not high. Anyway, after tests all throughout the year and being admitted to hospital I was diagnosed at 20 years of age with epilepsy. It’s something that’s changed my life forever. Epilepsy. What even is it? I mean I know people have “fits”, but me? Not me, I’ve always been healthy!

Epilepsy has made my life so far quite trying, I’m not going to lie. One reason for this is because I’m newly diagnosed and I’m on a lot of medication. It’s the medication really that’s the toughest. It makes simple daily tasks impossible- waking up for one. I’m never fully awake anymore as these drugs have made me so exhausted to the point that most times I don’t remember falling asleep and often sleep for hours upon hours. It doesn’t matter where I am, I’ll fall asleep. I often don’t remember conversations I’ve had either which is annoying for the other party! It has suppressed my appetite (yay!) so I have to “remember” to eat. (Luckily enough I’ve enough meat on my bones to keep me going for a while lol)

But the worst thing I think is how it’s affected my career and independence. I work in retail at the minute, however find myself having to constantly go take breaks to sit down and have a glass of water because it’s impossible to stand for any longer than 10 minutes. It’s hard for someone who last year worked hard and loved her job and had no problems- to finding it difficult to manage daily tasks we all take for granted. When I was not on medication I had constant terrible headaches more frequently and have had 7 witnessed seizures between January and October.

Since being started on medication the seizures haven’t stopped but I hope in time they will. It is a very scary thing to live with, I’m afraid to sleep on my own as I’ve had seizures in my sleep. I’m scared to go out with friends in case I have a seizure whilst out… Which has happened a few times. I also get so embarrassed when it happens in public or in private. You lose all control of your body and then don’t remember how or why or what is going on. It is embarrassing but it’s something I have to get used to because the condition itself is not.

It’s such a common condition that not many people talk about. It’s time to break the silence because of this “stigma” attached to it! I feel that it’s important for people to be seizure aware- What to do if you see someone have a seizure. More often than not when someone is out having fun, having a few drinks, the first thought people get is “Wooow she is pis***, look at the state of her!” Instead of judging, go help :) I’ll leave a link below to first aid for a seizure. I will admit it’s a scary sight too if you’ve never seen one before it certainly freaked me out the first time I seen someone having one!

Back to the stigma, epilepsy doesn’t disable everyone as a person, more often than not when people get to my age they’ve already been diagnosed and have been on treatment for a while so they’re fine to work and get on with life. It’s also one of those things you can’t see physically until you actually have a seizure, don’t ever doubt someone just because they look fine on the outside, it’s the same as mental health. I’m struggling right now because it is all new and I’ve never had to admit to myself I may not be physically able for some things right now. I hope in time that I will get better and will be seizure free for a long time. Until that happens I have to stay positive, healthy and look after my body. It really is your temple and I didn’t realize how much I took it for granted until this year!

Look after yourselves,

Kira X

You will get a lot of info from: www.epilepsy.ie

Be Seizure Aware- https://youtu.be/WP4NZcfadIk1

You can also donate to support epilepsy Ireland.