my-epilepsy

Spent quite a while today trying out different themes for this blog, until I found this one. I think it works because it’s cheerful yet not cheesy. I tried a couple of others but they just looked dark and mysterious, which is certainly what I personally would never be described as and also what I would never want to describe us people suffering from epilepsy as. So bright and cheery  – which is more like me, and well no I wouldn’t say epilepsy was particularly that way, but I am trying to ensure it is not depressing. So there.

Speaking of the term ‘epilepsy’ and describing myself as someone who suffers from, or has the condition ‘epilepsy’, I feel this is the way it should be described. I get goosebumps of anger when I hear term “epileptic” as descriptive. I am NOT epileptic! It just sounds so horrible and it kind of labels me as someone of that nature full stop. “Oh, epileptics are… blah blah blah”.

NO NO NO! Do people with depression get labelled as “depressed people”? No, well, not that I’ve heard of. Epilepsy is just one part of me. I’m lots of other things, and no of course they’re not all wonderful things, in fact I’m sure I’ve been called all sorts of things, but just please please don’t ever call me an epileptic. GGGRRRRRR!!!!!

Thanks 🙂 Now that that’s out of the way, lett’s move on to happier things. I’ve passed the “one week” without a seizure! Yay! But to be realistic, just means I’ll probably have one in the next day or two, but still, it was less than a week the past couple of weeks. On that note, I’m going to go to bed because it’s 10pm (OMG!) and I’m tired. Goodnight!

I haven’t got a whole lot to say today – I haven’t had a seizure even though I am due (6 days – touch wood). My mum has moved on to stay on at Ali’s house for a couple of nights but she might come back and hang out with me for a while in a few weeks. So that’s cool.

Anyway, so as I don’t have much to say about myself and epilepsy today (yet) thought I’d give you some facts. Here is a list of famous peeps with the condition:

Actors:

• Danny Glover
• Hugo Weaving
• Rik Mayall
• Bud Abbott

• Caligula
• Joan of Arc
• Muhammad

Music

• Jimmy Reed
• Neil Young
• Prince
• Ian Curtis (Joy Division)
• Adam Horovitz (Beastie Boys) – recently died of cancer

Sports

• Tony Greig
• Wally Lewis
• Paul Wade

For a fuller list check out Wikipedia – this is just a small sample.

OK nearly time to go home. Bye for now!

Greetings, did I mention that I’m a mother as well?

People often ask if it’s hard being a mum with epilepsy and to be honest, the answer is no not really. I mean, I am very limited in some ways – can’t jump in the car and take my Lilly somewhere. And until about a year ago I would walk her around in the pram instead. But then I had a very dangerous seizure and have realised that it’s too risky to walk her alone. So that’s the end of that.

However otherwise I don’t feel nervous with her on a day-to-day basis. I think stress plays a role in the number of seizures I have, so if I spend my time worried about things like “oh no what if I drop her down the stairs / down the toilet”, I reckon I may be more likely to have a seizure. So our life is pretty normal together, just not much time is spent alone out of the house. But that’s OK, we just have more family and friend time outside together!

It can worry my other family members though. A seizure example I was reminded of today by my sister Ali was one not too long ago (and Ali if I get this slightly wrong you know it’s only because I have no memory whatsoever except you telling me). Anyway, apparently I called her at about 8:45am and said where are you? And she said um I’m at work where are you? And I said I am at work getting my hair done (no I am not a hairdresser). And she said where’s Lilly? And I didn’t know. So I can understand the concern on her side! But on my side, I had dropped Lilly at child care, I was at a local shop buying something or other and it just happened. As usual. She called me back a few minutes later and I went and double checked that Lilly was a child care, and she was. So I went to work and that was that.

So no pain, just a small amount of confusion and vagueness on my side. I really don’t think my seizures cause me much problem in my life. I often compare myself to someone who suffers from migraines. What’s worse? OK, there are large-scale problems that epilepsy causes in my life (not being able to drive etc) but I don’t experience any immediate  intense agony the way migraine sufferers do. I think I would rather have the condition epilepsy than migraines. I can’t deal with any sort of pain. Ask my husband. Right now I feel like I am coming down with a cold and I am curled up in a ball and I hate it! A sore throat and chills! Big deal! Weird huh?

All that I can say that the only short-term thing epilepsy does is embarrass me at times. But we’ll get to that…karate chops and shower curtains and Dan Murphy’s (not combined)…

Anyway happy mother’s day to all my mummy friends and family!

This afternoon I went to the airport to pick up my dear mummy for a mother’s day weekend with the Sydney family members, and I saw the gigantic queue of people at security with their trays of laptops, bags and grumpy impatient faces. This is when I can use my epilepsy to my advantage.

I have a device implanted into my upper left chest called a vagus nerve simulator. This is designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. These pulses are supplied by a device something like a pacemaker.

So at airport security I have to inform them I have one of these  – and the moment I do that I rarely get past pointing to my chest and saying “I have a….” and they assume I’m going to say pacemaker, so they take my bag and shoes, take me to the front of the queue, take me through a gate and pat me down rather than go through the security ‘archway’. And today, with so many people, it was hilarious, because so many of them were obviously pissed off when I marched right past them.

So if you ever think you’re going to miss your flight and there’s a huge queue, just put on an innocent face and pat your chest! 🙂