We made it

Brighton Marathon 2016 / Time: 3:35:03 / Raised: £1,372.98 for Epilepsy Research UK (so far…)


My day on Sunday 17th April began like this:

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After a breakfast of porridge, banana, toast, and trepidation, we headed to the start-line in Preston Park. Now I’m sure it’s usually lovely, but after heavy rain and heavier footfall on this particular weekend, the starting area of the park was essentially a quagmire. After trying and failing to do a few dynamic stretches in the mud, and steadfastly ignoring the MC who tried to rouse us in a karaoke session, we were off.

The sun was shining, the weather was sweet. Having nervously strapped up my achilles tendon and popped a few more ibuprofen than I’d care to admit before starting, the first few miles were spent testing the water. I hadn’t been able to do much running for a couple of weeks beforehand, and to take my mind off this I chatted to a fellow green-vested Epilepsy Research runner I met on the way. We were both running for the first time and chuckled apprehensively at what we’d got ourselves into…

As we left the crowds and headed East towards the Marina, I found both a rhythm and a fellow member of Tower Hamlets GoodGym running club. Chatting was still possible at this stage, but soon I was on my own again as we turned to run back towards town.

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Having scoffed an energy gel and seen my cheering squad again, I was feeling pretty good at the halfway point. Brighton looks amazing in the sunshine, and I was catching up with a viking I’d set my sights on earlier in the day.

Without a doubt the hardest miles were 19 to 23. Running away from the crowds, uphill into an industrial estate made the cheering of the seafront seem a long time ago. Even the people handing out jelly babies, oranges and vaseline were (ironically) drying up. The lowest point was overtaking Spiderman who was on his knees, unable to continue.

I counted down the final few miles, spurred by the multitude of people out in support. Dizziness and slight delirium are all I really remember from the finish line.

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Having had no expectations, I was really happy to make it round in three hours and 35 minutes. I’d also edged past my fundraising target the day beforehand, which has since continued to rise.

Super special thanks to:

  • Epilepsy Research UK, who were there on the day to cheer us on. Twice.
  • Nick Davis, for these fantastic photos.
  • Daniella Davis and roommates, for letting us take over your student house for the weekend. As well as your bed.
  • The rest of my cheering squad: could NOT have done it without you.

Most importantly, an enormous thank you goes out to everyone who has donated to my sponsorship page. The experience of researching and writing this blog has proven to me just how important the work of Epilepsy Research UK is, and I am both humbled by and immensely proud of the incredible support you have all provided. And of course, there is still time to contribute to my fundraising page if you haven’t already.


I’m yet to decide what I’ll do with the blog from here. I’ll aim to keep running, and may book into a shorter race or two later in this year to hold myself to account.

And who knows? I popped down to watch the London Marathon runners go through my area earlier this morning.

I must admit, it looks quite tempting…

 

Luke x

https://www.justgiving.com/lukedavisbrighton16

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A chat with my chosen charity: Epilepsy Research UK

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‘Oh, that’s the one where you writhe around on the floor.’

Delphine van der Pauw, Research and Information Manager at Epilepsy Research UK is lamenting the multitude of misconceptions that people have about the condition she devotes every day to explaining.

‘Tonic-clonic seizures [which affect the entire brain] are quite a common type that gets portrayed by the media because they’re so violent, so dramatic… But they’re not the only kind.

‘There’s something called a ‘complex partial’ seizure… where someone might be walking along and suddenly decide to cross the road – they’re not aware of what they’re doing and they’re really dangerous but some people get accused of being drunk. That does happen, if people have seizures on the street they get accused of having overdone it. So there’s those sorts of misconceptions.

‘Then of course there’s the flashing light thing. Everyone thinks that everyone with epilepsy is triggered by flashing lights, which is of course photo-sensitive epilepsy. But only about one in twenty people with epilepsy are photo-sensitive.’

Delphine tells me that there are in fact forty different types of seizure (‘that people know about’). ER:UK, which dedicates all its time and resources to attempting to understand this widespread and invasive condition, has its work cut out.

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‘We’ve got this condition which is huge and is actually epilepsies rather than epilepsy – because it’s definitely not one condition – and there’s just so much research to do into the different types: why people have the seizures they do, why people aren’t responding to existing medication – which is the case in about a third of people. That has been the case for years despite developments and enhancements in drugs. The new epileptic drugs might alter your side effects but it’s still the case that people aren’t responding…

…Sorry, am I alright to go on?’

Delphine laughs but her immense passion for this area, which (prior to joining the organisation) she had no personal connection to is evident even over a phone connection. She builds up a similar head of steam at numerous points throughout our conversation.

When I ask about this passion, she sounds genuinely rueful about how little attention is given to epilepsy. ‘It’s so neglected and so misunderstood and there’s just so much work to be done and that’s why I feel like I’ve got a really close connection to it. You build that, I think… you don’t want to leave. There’s so much to do!’

Epilepsy is known by name, if not in any detail in public consciousness. ‘They call it the Cinderella condition’, Delphine informs me. It’s not a condition that regularly makes the headlines, so gets forgotten, left at home. ‘It’s never going to be as big as cancer but we can make it a hell of a lot bigger than it is now.’

‘It affects about one percent of people, the official figure is one in a hundred and three. In a lot of cases, about two thirds of cases, the cause is not actually known.’ Surgery procedures exist for some localised forms of the condition ‘but that’s a very invasive hardcore procedure.

‘For a lot of people, surgery won’t be an option… because too much damage is going to be caused.’

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ER:UK came into existence in 2007 after a merger between two separate charities. For a tight-knit organisation (‘there are only 6 of us’) they fund an enormous amount of annual research (though Delphine calls it ‘a drop in the ocean’) around understanding, treating, and curing epilepsy. ‘It’s all public money, there’s no government support. We obviously have to be extremely mindful of how we spend it’.

To Delphine, ER:UK is ‘kind of like a big engine really’. Her role within that is a vital one: ‘I am responsible for coordinating the committee that actually decides on who’s going to get the funding’. She also supports communications, answers multifarious queries, and organises expert workshops.

A highlight is being right at the forefront of cutting edge medical research. I can hear the enthusiasm again while she tells me about optogenetics, a technique whereby neurons can be controlled by certain wavelengths of light. Although it’s a long way off, research in this area could ultimately result in a device that detected when a seizure was imminent, and could prevent it from occurring.

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I’d need a much longer page to do justice to the full detail of this and the many other developments we spoke about. That there are such people working away on solving ‘the Cinderella condition’ with the rest of us unaware is mind-boggling, and humbling. Delphine had a final message for me to convey to those who have and those who might donate to my fundraising page:

‘It’s a fantastic cause, so many people are affected, so much is unknown, but there’s so much we can do to address that and we just really, really need people’s help. Please support us.’

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On Sunday I will be running the 2016 Brighton Marathon for Epilepsy Research UK. There’s still time to donate to this fantastic organisation and support their vitally important cause at https://www.justgiving.com/lukedavisbrighton16.

Thank you.

bm

Run for Beer / Squeeky Bum Time

Hello!

I’m back once again to remind you that today is officially TWO WEEKS until I have to run a MARATHON.

AN ACTUAL MARATHON.

It’s really happening people.

Something great happened last month though. I was flipping through the pages of Original Gravity and stumbled across an article on the phenomenon that is Mikkeller Running Club.

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For those of you not too familiar with the Scandinavian craft beer scene, Mikkeller are Danish brewery that have been growing rapidly in Europe and America in recent years. Their founder was a keen runner back in the day, so decided to start MRC as a sociable and healthy way to meet like-minded beer-heads.

Last month I went along to the London branch (there are an ever growing number of chapters worldwide), which meets at BrewDog Camden. The vibe is chilled and Carl and Luiz who run the branch make sure that they cater for a range of ages (though probably over-18), abilities and genders.

THE BEST THING IS that when you return from your 5 or 10k run (up to you), you are greeted with a refreshing (and free) glass of beer from the BrewDog taps. Check out their next event here if this is sounding like music to your ears.

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As you should by now have realised, I’m running the Brighton Marathon for Epilepsy Research UK very very soon. Just one example of the great work this organisation is doing happened last month, when they ran an international expert workshop (preliminary to a governmental white paper), on issues around epilepsy and brain tumours. 80% of people with brain tumours develop epilepsy, and the experts are aiming to  shed new light on this under-researched area.

The work of this organisation would not be possible without donations from the public, and this is the reason I’ll be donning my running shorts for 26.2 miles in two weeks’ time. ‘Every little helps’ is a reality, not just a cliché, and I am truly grateful to any of you who can spare a small amount to support this cause. You can donate here via my dedicated fundraising page.

With fourteen days to go, it really is squeeky bum time.

Thank you all so much.

Luke x

https://www.justgiving.com/lukedavisbrighton16