So, I have epilepsy. I’ve never been shy in discussing it here, or anywhere else for that matter. I’m not ashamed of it, so why keep it a secret? It’s far too misunderstood an illness as it is. And in the grand scheme of things, I’m extremely lucky that it doesn’t have a more significant impact on my life.
I run my own business, travel the world and pretty much do what I like. Except drive a car – and in London, that’s no hardship. You’d be quicker walking, most of the time.
But things in the world of my epilepsy have deteriorated in the last few months, and now it’s time to do something about it. More sleep disruption, more frequent seizures and a hell of an impact on my general mood.
So I’m back under the care of my excellent neurologist and facing a battery of tests get to the bottom of things. This includes the dreaded “sleeping deprived” EEG, where I have to shave 4 hours off my usual sleep time and then get wired up to an EEG like I’m a lab rat.
Then there’s the noise of the MRI – once I’m lying down in its insane magnetic core. I try to imagine I’m James Bond and Bloefeld is once again torturing me. Last time, they played some dire easy listening music down the earphones, so I didn’t have to use my imagination too much!
The thing is, we know so little about the brain. Really. So when something like epilepsy messes up its normal functioning, it’s a bit trial and error until we know what’s going on. And that includes
messing around experimenting with different meds. That’s the bit I’m looking forward to the least, seeing as I previously had some pretty awful side effects last time my meds are changed. Something I think most people living with epilepsy could identify with.
So. I’m braced for boredom, waiting hours in various clinics and a fair bit of inconvenience. But all in the name of getting better. And not involving one jot of pain (except for the many blood tests I’ve had in the last few weeks). So again, I’m lucky.
Here’s hoping we make some progress. Watch this space for updates. And if I get too sorry for myself, please do remind me just how fortunate I am. It’s too easy to get self-absorbed and morose.