March 26th: Purple Day For Epilepsy

It’s that time of year again, when the lovely people at Epilepsy Action start their drive to raise awareness of epilepsy. This year they asked members to contact them and tell them what epilepsy means to sufferers as individuals – because no two epileptic patients are affected in the same way, and this needs to be common knowledge.

As a media volunteer, I was asked yesterday if I could find myself to be available for an on-air interview at my local BBC radio station. Sadly, travelling is not an option if I’m by myself, and the best compromise the station had was to come out to me. Since my neighbours are having some very noisy work done at the moment (I want to see that kitchen when it’s finished!) and my living room is full of tarantulas, this really was not going to work – and so I had to say no (the living room is also tiny, and there’s still that Yappy Dog Thing over the road). The noise and the possibility that a member of the radio crew might be arachnophobic are not exactly conducive to a smooth interview with good sound quality, sadly.

BUT. Even if I can’t do the radio interview, I can blog about what living with epilepsy means for me. So, here goes:

What Epilepsy Means For Me:

Bruises. I can blank out at any time, and I will always suffer serious bruising at the point of impact because I am unable to stop the fall that I’m not even aware of. There really is nothing like a black, red and purple hued hip to tell you what happened, when you wake up confused and in pain.

Anxiety. You want me to leave the safety of my house and hop on public transport, alone? Sorry, that just isn’t going to happen; I am far too frightened of seizures.

Bladder Incontinence. Yes, it’s real. If I told you just how many times my husband has had to change the bed sheets in the middle of the night you would be shocked. I wear continence pads now, just in case. I’ve soiled myself in public far too often to not use such a product if I’m going out. Even at home, it can happen when I’m awake and active.

Broken Bones. My ribs, a toe and my left arm so far. I walked down the aisle to marry my husband with a broken toe, because epilepsy doesn’t care that you’re about to get married. It can – and will – strike at random. I’m just lucky that the broken toe was healing before I got married, and that it didn’t happen on the day. It still really hurt though, and my bridesmaid had to help me to ensure that the pain was minimal. She did a great job, by the way. I got down the aisle without a stick and without pain because she had her arm beneath mine to take the weight off for me.

Randomly Throwing Objects. It’s mostly my right hand that has these “twitches”. I can be holding something, and then I find myself dropping or throwing it. I once threw a glass of red wine at my mother’s living room wall. I didn’t see the action coming; it just happened. I remember staring at my hand and wondering why it had done that for a long time, since I didn’t realise that I’m epileptic, back then.

Sleep Walking. I won’t go in to detail here, but this does happen when you have epilepsy – and it can be embarrassing. It’s a seizure all on its own.

Strange and Erratic Behaviour. Before you write somebody off as drunk, please check that they’re not. Many of us have switched off and are at the mercy of our brain if you witness us behaving oddly. We can’t help it, and we don’t want it to happen – it just does. I’ve been in a situation in which I couldn’t find the door when I wanted to leave somewhere, and I was incredibly lucky that a complete stranger realised what was happening and helped me.

Status Epilepticus. This is an important one. If we go into status epilepticus you’d better call out the paramedics. It can be fatal. Yes, it has happened to me. A paramedic team (who I remember called themselves “The Ginger Duo”) prevented me from having to go to hospital in an unfamiliar city that I was visiting, simply because they had been told what they were being called out to, and had the correct meds on board.

So, this is what epilepsy means for me. Some individuals are even worse off than I am.

I encourage you all to wear purple on Sunday, even if it’s just a wristband or something. I have my wristband from Epilepsy Action, and a purple hoodie, ready to go.