Personal Stories: Living With Epilepsy

I wake up and immediately realise that I’m not where I’m supposed to be. I taste blood in my mouth and my limbs feel heavy. The kind of heavy they’d feel after an intense workout.

It’s been a good while since I’ve been well enough for a workout.

My routine here is simple. I perform a quick check to ensure that I can move my arms and legs without too much pain. All is ok?—?so no broken bones. I look around to try to work out where I am. For most of you, I suspect that this would be easy and almost instantaneous, but my brain hasn’t recovered from the trauma of the seizure yet. In this state everything takes time. I’m slow but deliberate in my movements.

Turns out I’m in the lounge, near the sofa, pressed up against the door. I lift my head up a little and, bit by bit, start to drag myself up onto the sofa. It takes me a few minutes, which proves to be all too fast because blood rushes to my head and I end up face down in the sofa cushions. An odd sensation though?—?my face feels wet. I pull up and there is blood on the sofa. I had better clean this up before my wife gets home. Also, I should really stop the bleeding.

About thirty minutes later I’m able to piece together what has happened. That’s good. It means this was only a small seizure. Anything larger and I would be in a state of confusion for the rest of the day.

It turns out that as I was leaving the room a seizure caused me to fall face-first into the door, sliding down it and onto the floor. My nose is bust, but thankfully not broken and other than the usual feeling of embarrassment, I’m all good. Blood can be cleaned up easily and I’m safe enough at home.

For a while now I’ve wanted to write a little something about what it is like to live with epilepsy. I know what I want to say, but the words never seem to flow easily. I want to say that, chances are, you have no idea what it is like living with epilepsy. One of the great misconceptions is that everyone with epilepsy has the same symptoms, the same seizures, the same recovery patterns?—?oh, and we all get seizures from the television or computer screen.

Just for the record, I don’t have photosensitive epilepsy and my main triggers seem to be tiredness and, oddly, things moving just on the edge of my peripheral vision. I have full tonic clonic seizures but also occasional absences. The next epileptic that you meet will almost certainly have different triggers and seizures.

However, the nuts and bolts of the illness do not really touch on what it is like to live with epilepsy. Perhaps that’s why I felt that describing my latest seizure was the best place to start. For me, and I’m sure for my wife, the most overwhelming element of living with epilepsy is the unknown. We may go to the cinema tonight, but of course there is a backup plan because we do not know what will happen. When we’re invited out with friends, we say that, “sure we’ll come, but we may have to play it by ear.” Life plans are a luxury. We just have to take things one day at a time.

Although, this is not always the case. A huge amount of epileptics have their condition controlled by medication and can live “normal” lives. At the moment, this does not apply to me. I’m hopeful that it will eventually. Until then we’re living with the unknown.

Still, I consider myself to be unbelievably fortunate. I have the most extraordinarily loving and supportive wife that anyone could hope for. We’ve been married close to seven years and have been together for over eleven. I know what her fear is; that one day she’ll come home too late and I’ll be at the bottom of the stairs, or will have hit my head on the sink or something else equally calamitous. I know she fears this because I know her so well. It’s a natural worry obviously, but she never lets it overwhelm her. Her common response when things get bad is to look me square in the eyes, smile, nod her head and whisper “let’s get on with it.” Life. We have a tremendously happy one. We have fabulous friends and a loving and supportive family always ready to help out when needed.

Living with epilepsy kind of stinks, especially when going through an uncontrolled period like we are at the moment. But life, life doesn’t stink. It’s an adventure, like a road leading into mist. It should be scary, only I’ve got the perfect partner alongside me.

WRITTEN ON APR 4, 2014 BY

Jonny EvansWeb Designer / Graphic Designer / Ranter / Commentator / Music Maker / Occasional Frowner. Husband to the lovely @_Carolyn_Evans_

Reposted from JonnyLikes2Rant