This bed, though…

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I travel for business a lot. That means dealing with the rough and the smooth when it comes to hotels and hotel beds in particular.

Right now, I’m working in Cheltenham and staying in a really rather lovely hotel. And I have to say, it has one of the loveliest hotel beds I’ve ever crawled into. I didn’t touch it when I first arrived yesterday afternoon, as I had to hop straight onto a phone call and then sat at the desk at my laptop for several hours.

But when I finally got into bed….wow. I’ve had a run of pretty awful sleep lately and wasn’t looking forward to another night away from home. But last night, despite all the awful news on TV, I slept like a baby.

Right through until my alarm went off this morning.

I prefer a firm bed, but this one enveloped me like I was back in the womb. I drifted off in minutes and really found it difficult to come out from under the covers.

I have to admit, I immediately made myself a coffee and got straight back into bed so I could enjoy just a few minutes more.

Sleepless in Sitges…

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I’m back in Barcelona for business today, but spent yesterday afternoon and evening in Sitges, just a little down the coast. What started with a lovely walk by the seafront, followed by some delicious tapas at L’Avinyet, ended with me kept awake half the night due to noisy neighbours in the hotel.

It was one thing after another, including some idiot who had managed to lock himself out on his own balcony, as well as other guests arriving back to the rooms (loudly) at 1am, 2am and 3am. I’ve not stayed at this hotel and don’t think I’ll be back. While the staff are friendly and it has some nice facilities, the walls seem to be paper-thin and it’s just too noisy to get any sleep.

And I like my sleep…

My alarm this morning went off at 6am, but to be honest. I’d been awake since 5:30am. Which, in UK body clock time, was really 4:30am. Ugh. No opportunity to grab a coffee before I got the train from Sitges to Barcelona Sants, so I made sure I swung by the Starbucks closest to my client’s offices before coming in. Cue one very large Americano – the first of many today, I fear.

(I didn’t even care that the Starbucks barista called me ‘Richie’… )

There’s a reason they use sleep deprivation as torture… Still, I get to spend today with some really amazing people, before heading back down to Sitges for another evening. And hopefully, some more sleep…

Hey brain: why you no work?

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It’s Saturday afternoon and I’ve had three (that I’m aware of) epileptic seizures this week. Maybe more on the horizon. My overwhelming reaction is one of disappointment. Quickly followed by boredom.

I had a couple of nighttime seizures earlier in the week, which left me feeling like I had the mother of all hangovers each following morning. The kind where you can’t bend over to tie your show-laces without searing head-pain and the feeling that your brain is about to pour itself out of your skull via your nostrils. The kind that leaves me fumbling for words and feeling quite spaced out for hours afterwards.

I then had a night of only four hours sleep Thursday night, due to a crappy hotel in Dublin and its proximity to some particularly shady nightclubs. (Top tip: never stay in Harrington Hall on Harcourt Street, unless you like to listen to screams, fights and club music all night).

So, this morning’s absence seizure wasn’t entirely unexpected. I’ve had a busy week and have missed a lot of sleep. The perfect formula for unwanted brain-spasms.

Still, unexpected is one thing. Unwelcome is something else. I slept for about 10 hours last night, but still woke up feeling hollowed out inside. Managed to get as far as Starbucks and back today before I had a passing absence seizure in the hallway of our apartment and took myself off to bed for an hour.

And that was after cancelling my training run this morning. Only a few weeks until the Royal Parks Half-marathon, so I should really be out there, pounding the pavements.

But not today.

(And no, the irony isn’t lost on me – I’m training to run a race to raise money for Epilepsy Action, while my own epilepsy prevents me from training…)

I’m feeling better, but still not myself. I’d actually like to sleep now, but I’m afraid that if I do, I won’t sleep tonight and we’ll be back to square one.

We’re due to go to the cinema this evening and I’m really going to have to see how I feel after dinner before committing. Unless my brain tidies itself up by then, I’m not sure how it’ll cope with a couple of hours of ‘The Magnificent Seven’.

In summary, epilepsy sucks donkey balls. But then we knew that already, right? So I’m really only writing this to make myself feel better about the whole thing, put it into context and move on. I think my epilepsy tends to make me more introspective. Hopefully not self-pitying though. This is where getting the terminology right is key: I live with epilepsy, I don’t suffer from epilepsy.

So, as ever, tomorrow is another day. I’ll chalk this one up to experience, rest up and recharge my batteries. But if epilepsy was my flat-mate, I’d be leaving them a post-it note on the fridge right now.

Next!

Old man nap time

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Just call me “Nappy McNapFace”.

After my run this morning – after which I felt I could take on the world! – I took a much-needed shower and made myself some lunch. I updated the blog, wasted some time on twitter and booked a cinema ticket.

I then had some comics to read, so curled up on the couch with my iPad and started to catch up on everything in the world of Civil War II. Cut to two hours later and I wake up from a very, very deep sleep, feeling like someone has removed part of my brain. My iPad was thankfully still resting on my chest, but I’d fallen asleep literally three pages into a comic.

Pathetic.

I guess last night’s rubbish sleep – a combination of my standard insomnia and high temperatures here in London – followed by a 15km run around London, was enough to convince my body to take a nap. A shame it was in such a weird position, with my face embedded in a cushion.

I had such a lovely case of “nap face” when I woke up, with some epic creases (more than usual) across my forehead.

It took a while to wake up properly, and by the time I’d kicked my brain into gear, I almost missed the start the film I’d booked. As I’d seen everything else that was showing, I ended up going to see “Mike and Dave Need Wedding Dates” and, while it’s not going to win any Oscars, was pretty funny. In parts. Just what my brain needed to relax. Plus lots of Zac Efron without his shirt on, which was all central to the complex central narrative of the film.

Really.

Now I’m left with the challenge of sleeping tonight. It’s never a good idea for me to take a nap in the afternoon. Aside from waking up like I’ve been in a car crash, it makes it harder to sleep at night. Much harder.

I think I’ll deal with that by staying up late watching “Mr. Robot” and contemplating my own mortality.

Seriously, I must be getting old!

Heaving breathing, flashing lights

So I had my sleep-deprived EEG this morning. I fell asleep after about 1am (after staying awake by catching up on the massive backlog of comics I haven’t read) and my alarm went off at 5:30am.

Groan.

I freely admit it was tough to get myself out of bed. Harder still to avoid the coffee machine. I was under strict orders to avoid caffeine before the test. So I woke up at the kitchen table, sipping sparkling water and wishing I was somewhere – anywhere – else.

The test went fine, but was pretty unpleasant. Firstly, you get a load of electrodes glued to your scalp. Then I had to complete a series of exercises, while my brain activity was monitored, including:

  • Hyperventilating, until I got pins and needles in my face and my hands
  • Staring into a strobe light, going against every natural instinct to look away

Ugh. Nothing painful, but unpleasant all the same. I also had to work from my laptop while being monitored, to see the impact a computer screen has on me. I also had to sleep, but – wouldn’t you know it – it took me over an hour to nod off. And then it was in a strange position, so I woke up with an s-shaped neck.

The clinical physiologist that took care of me was brilliant. Very professional,  but also very friendly. We bonded over our shared love of travel while she attached the electrodes to my head.

(A sentence I never in my wildest dreams thought I’d type).

I’m now back at home, shoving coffee into my face and working on staying awake for the next few hours. I’m not sure I’ll manage without a short nap, but I’m determined to catch up on my sleep tonight. Big work day tomorrow.

And now, for your delectation, a selfie of me – complete with electrodes. A valuable lesson in why you should never take a selfie while lying down.

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I’ll get my results in a few weeks, after I get back from South Beach. Fingers crossed for a helpful result. Whatever that is…

Mission impossible

 

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My last EEG test – aren’t those electrodes just the most attractive thing ever?

I’m going into hospital for a sleep-deprived EEG test tomorrow morning. I’ve had a few EEGs on my long journey through the world of epilepsy, including being monitored all night while I slept.

 

Tomorrow, I need to go in having had about half the sleep I normally get.

Oh.

The letter I received recommends going to bed two hours later than usual and getting up too hours earlier than usual. That is, by definition, the worst of both worlds. And to cap it all, I’m not allowed to have any coffee tomorrow until after the tests are complete.

No coffee?!
Tomorrow is going to hit over 30C  in London and I have to brave rush hour public transport short on both sleep and caffeine.

I can tell you one thing: it won’t be pretty.

The sole upside is the possibility of spending a few hours in the afternoon sunshine in our garden by way of recovery. After which I’ll spend far too much time trying to scrape the disgusting electrode glue off my bald head, inevitably leaving some somewhere…

Ironically, my sleep has been pretty good over the last week. Just when I could do with some insomnia, I’m sleeping like a baby.

See you on the other side.

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.

Not feeling so fresh

Good news! I spent last night awake and in pain.

I began to feel a little…uncomfortable…about an hour after finishing dinner. Something I’d eaten obviously wasn’t agreeing with me and the result was the kind of pain in the stomach that just takes your breath away. I couldn’t sit, I couldn’t lie down.

I went to bed a little after 10pm, but was awake until midnight – at which point, I somehow fell asleep. Wide awake with the pain again just before 2am, at which point I decamped to the couch with my duvet.

What followed was an unbearable cycle of pain, dozing off, more pain, lying awake cursing my intestines and sitting up to try to feel more comfortable.

I last looked at my iPhone’s clock at 0430am this morning and was then wide awake at 0600. I estimate I’ve had about three hours sleep all night and so don’t feel particularly fresh this morning. This wouldn’t normally be a problem on a Sunday, except this morning I have to travel to Bristol to run a week-long programme for a client.

As ever, it’s only when you’re short on sleep that you really appreciate it.

And now?

Happily, the pain in my gut has subsided to a dull roar and I might even be able to snooze on the train later. But it’s still lousy timing for a day when I need to be on my game.

Putting it all into perspective, it was one night of pain and sleeplessness. On the other hand, this combination is normally a pretty reliable predictor of a seizure. Living with epilepsy means I need to keep an eye on my sleep duration and quality, as well as stress levels.

Any night without sufficient sleep leaves me uneasy and braced for a return of my epilepsy. The thing is, epilepsy doesn’t care why I didn’t sleep, it just waits for the right moment to return and smack my upside the brain. Long flights, random insomnia or just too many late nights in a row. Or a night dealing with…gastric upset.

Fingers crossed I can get myself together and avoid any unwelcome brain nonsense later on.

Home sweet home

Flew back from Malaysia overnight with BA after a fairly full-on week of work. I got a nice seat (thanks @FrankDJS!) in business class which guaranteed me a few hours of sleep. As did the fact that I hadn’t slept properly since I got to Malaysia.

Oh, I was over the jet-lag within 48 hours – it was the other hotel guests who kept me awake.

Continue reading “Home sweet home”