Back to square one?

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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.

  1. Recovery is important, your health is everything, so the right thing to do is to focus on getting as well as you can; one step at a time.

    I had an MRI yesterday, bizarrely, and they played the news at me through those tinny headphones. It wasn’t easy listening; it was a very long and upsetting article about some past atrocities in Northern Ireland… stuck in an MRI machine… Need I say more?!

    Best wishes to you sir!

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    1. Thank you! And I hope your MRI wasn’t for anything too serious.

      I honestly wonder how much of the brain activity is due to anxiety at being stuck in a metal tube while a giant magnet spins around your head… It’s not exactly a ‘baseline’ measure of my brain! 🙂 But I’m sure my neurologist knows what he’s doing.

      And yes, health trumps everything else. So it’s time to sort it out before it gets much worse.

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  2. I hope they find the cause and can recommend some treatment, there is nothing more sapping that disturbed sleep. May be the consultant will recommend you returning to iOS 🙂

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    1. Thanks Steve. Right now, I feel like I could sleep for several weeks… Though somehow I doubt the neurologist will have a strong opinion on the iOS vs Android battle in my home. Though if he does, you’ll be the first to know! 😉

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  3. I can only imagine how stressful this all must be. I hope you are able to get back to your old routine as soon as possible.

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    1. Thanks Mark. It’s not too bad in the scheme of things. I’m just looking forward to a return to some semblance of normality.

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  4. What shite is this? Bah!

    Medical crap is bullahit.

    I don’t have much in the way off eloquence at the moment. I’ve currently been up for 21 hours and it’ll be at least 24 but I am thinking of you!

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    1. NO eloquence required, MT. Hope you’re sleeping soon!

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      1. Just out of the hospital, picking up things for her recovery at home

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  5. […] day (good busy) and I’m not feeling 100%. I might go tomorrow afternoon, after my MRI. Yes, the start of the tests. An MRI tomorrow and a sleep-deprived EEG on Tuesday […]

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  6. […] on the various neurology tests – I’m just looking forward to another trip to Sitges and time spent lying naked on the […]

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