5 reasons why living with epilepsy is harder than you think

There are many reasons why living with epilepsy is much harder than you would think it would be. Here are my top 5 reasons why

1.   You can have a seizure and not know it!

Many seizures are not visible and even if they are somewhat visible, if you are home alone there will be nobody there to witness it anyway. There have been many times when I have found myself wandering aimlessly around my house, with no clue what I am doing. There is nothing more confusing then suddenly finding yourself in a completely different room to the one you remember last being in, with a banging headache, lots of confusion and occasionally a bump, cut or bruise. The best part is you get so used to it, you just continue going about your daily business once the confusion clears.

2.    “Flashing lights” are everywhere!

First, it is important to remember that not everybody with epilepsy will be affected by flashing lights, but for those that are “flashing lights” are everywhere!! You may be excused for thinking the only places you find flashing lights are on movies and at concerts, this however is not true. Have you ever been driving along on a sunny day and you drive past a forest and the sun flashes through the gaps in the trees? That counts as a “flashing light”. Ambulance and police cars driving on blue lights? Yep that is also a “flashing light”. If you ever see someone drop to the floor and curl up in a ball like a hedgehog at the first sight of a flashing police car, they are either epileptic or they have committed a crime.

3.   Seizures do NOT look anything like they do on the TV

We have all seen seizures depicted on TV programmes and on movies. I have yet to see one that looks realistic. Somehow, TV manages to make seizures look graceful. The person having the seizure always falls gracefully to the floor, they never land face down and never seem injured. Whenever I see programmes depicting epilepsy I can’t help but ask where is the drooling? where is the pee and wet pants? Where are the bruises and why does nobody ever go face first!

4.   You will always find yourself explaining your bruises

Let’s be honest, we live in a world where women often have to explain their bruises, particularly if they are on their face. If you live with epilepsy, facial bruising is something you might just have to get used to .. and so is explaining them to others! I can’t count the amount of bruised cheeks and black eyes I have had over the years, nor can I count the amount of times people have given my poor husband dirty looks when we have been shopping or walking down the street. I almost find myself wanting to shout out “he doesn’t hit me”.

5.   You will always be tired

I recently read a quote that said it takes 3 times the energy for a person with epilepsy to complete the same task as a person without epilepsy. Now, I don’t know if that is true or not, to be honest I don’t think there is any research behind it, however, I would be inclined to agree with it. I am ALWAYS tired! I could get up at 7am and totally be ready for a nap by 9am. It’s not even like a physical tiredness, it is a mental tiredness that I can’t even put into words. No matter how much sleep I get I am still exhausted, and I constantly have bags under my eyes. I swear I keep Boots Number 7 in business with the amount of concealer I buy (if they want to send me some for free they totally should!) Tiredness just becomes a part of life when you have epilepsy. You just have to embrace it because it’s not going anywhere!!