Saturday 25 March 2017

What Are Your Limits?

So, do I um... cycle? Well yes, just a bit.

I was staggered though at just how rare I was, especially within the Epilepsy Community. This was brought home to me when I woke up in hospital, after my 12 Hour Static Cycling WR attempt. My doctor said to me, very matter of fact, "We don't see people with epilepsy pushing their bodies to the limit like you've done." In fact, I really only know of one other athlete who has epilepsy and would push her body in the same way, which I'm proud to say puts me in lesser achieving, but similar(ish) company to Marion Clignet - The French pursuit cyclist, Olympic medalist and multiple Cycling World Champion, turned Ironman athlete and incredible epilepsy ambassador.

I had, had a seizure. But what was interesting about it, was specifically how it came about.
Sodium is more commonly known to you or I as salt, and through the years of being treated for my epilepsy, along with studying my Sport Degree at Durham Uni, I've understood, that one of the main functions of my salt intake, is to regulate my neurones firing, sending signals to my muscles, when I want them to, and unfortunately, sometimes when I don't.
Essentially, Sodium is your brain and body's electricity. As it happens, one of the major epilepsy medications is even called Sodium Valproate. It's your body's sodium and water balance for example that stops athletes from cramping, particularly during hot periods when we sweat more. You would understand then, that Hyponatraemia would be dangerous for people who have epilepsy, given it concerns low Sodium levels, which is exactly what I was admitted to the Queen Elizabeth University Hospital in Glasgow with.

The care I got there was exceptional, and despite being in a fairly critical condition, needing my Sodium levels brought back to normal, then suffering a secondary issue with a Creatine Kinase level which was 1354, rather than the normal range of 25-200... I was left with no long term health issues as a result of my sublime treatment.
To one of Scotland's most experienced and senior sport doctors, Dr. John MacLean, who helped me inside the SCROPS show, to Dr. Christian Delles and his team, Dr Johnpillai, Dr Bogie and the rest of the ICU staff, I can't be grateful enough.
What one of the ICU doctors said next however, not only took me completely by shock, but took my breath away. Dr Johnpillai, who had explained how rare a case I was, turned to me and asked if he could use the data they had gathered from the incident, to go towards research?

Of course, to end up in hospital isn't how you raise positive awareness of epilepsy, it does the opposite. But then again, if it hasn't been done in the UK before, then how can we learn? A terrible experience with a crew in 2008's Race Across America, is how I knew how to build a great crew for events like the Track Cycling WR attempt still to come. Sometimes it's from the worst experiences that you learn the most.
As I say though, being seriously ill, isn't going to help the stigma, and for safety reasons, now we know I'm physically able, we've revised the original 24 HR WR Track Cycling attempt, to a 12 HR ride, attempting the 12 and 8 Hour World Records. I may want to push my limits, but I don't want to push my luck. That would simply be irresponsible and not remotely helpful to others with epilepsy.

Going back to Dr Johnpillai's request... to learn not simply for my own benefit, but instead potentially be able to help the people who inspire me who have epilepsy too, to be safer... well it was a no brainer. I of course said yes.

By the end of the ride, I hadn't broken the Guinness World Record 348.0km, I realised I might have done something more important.
I had pushed the physical limits of the average person to what we understand is the second greatest distance ever recorded by a female on a static cycle - 340.04km. Not only that though, but knowing the potential of the research that we could use what happened for, means more to me than a certificate. To show what people with epilepsy can do, and maybe even try to help them get better to allow them to do it as well, and safely, for me is huge. I'm extremely proud, to have met the team in the QEUH Glasgow's ICU, never mind help with their research.

But of course, this is my annual Purple Day post and I couldn't let it pass without mentioning something else that happened over the summer gradually and eventually, and in the most incredible way, during the 12 HR Static Cycle attempt.
The reason (or one of them), International Epilepsy Awareness Day, is called Purple Day, is because lavender grows in isolation. A purple flower which grows alone - the same kind of feeling of being alone, that's caused when something is so incredibly hard to describe, that you can't explain it to anyone else but the 1 in 100 people like you. Particularly when you could walk past someone else who is that 1% and has epilepsy too, not even knowing you share a common bond.
But when I was at the Sick Kids Hospital in Edinburgh to be treated, and during activities I've taken part in through Epilepsy Action, I've been made to feel less alone, because I've been with other people like me. People who look completely normal and healthy outside of a seizure, and can experience such a spectrum of horror within the seizures, like Petit-mal auras. But ultimately people who understand my epilepsy like nobody else can.

When I began to think of myself as disabled, I found it incredibly liberating because I wasn't in the limbo between not looking disabled, but my health saying otherwise.
This happened gradually over the summer as I've explained in previous posts, through the Paralympics and their inspiration, as well as that of the athletes. I can't begin to describe the feeling then, to feel encouraged by stars of that community, when our Gold and Silver Paralympic Tennis medalist from Rio, Paralympic Champion Gordon Reid, Tweeted me, to "Keep smashing it!" or one of my biggest inspirations, Baroness Tanni Grey-Thompson Tweets "Well done Katie". It gave me an amazing sense of belonging to a very special group of people - athletes with disabilities. I realise that while I'm no Paralympic Champion, I can be a proud disabled athlete. (Even if I can't quite 'smash it' like Gordon Reid.)

And that, well... makes you feel less lavender.

But then something else happened too. What was incredible during the ride, was the realisation that through on the day donations, I had already surpassed my original fundraising target before the track ride, and have amazingly, had to revise it!
As I write this, the kids in Ward 7 of the Sick Kids Hospital in Edinburgh, my old ward, will be making friends and finding inspiration for the rest of their lives there, and Epilepsy Action will be putting into action all their plans for a day of purple, so that even as someone walks along the road tomorrow, they will hopefully pass someone wearing purple and not feel alone.
That to me, is worth cycling for.

So there you go, that's what happened a fortnight ago, the issues it threw up and the incredible opportunities it presented as well.
Even if you can't donate to either of my charities, maybe as you get up in the morning, you could try to wear something purple.
And if you would like to donate, here's the link:

....Oh, and happy Purple Day! 

Saturday 4 March 2017

Are We Nearly There Yet?

You'll probably agree with me, when I say that I think I might be going slightly mad, due to the fact I'm starting to take some enjoyment in playing with my cycling pain barriers. I can agree with anyone that says that this is definitely not normal! I can reassure myself however, that I'm also doing this to learn exactly what it is, that means I'm not thinking about the pain of riding any ultra-marathon distance.
I know that because of my likely side effects that I have as a result of my medication, that I'm not exactly an Olympian physiologically. I know that's not where I gain my competitive advantage from. It's in the way I think. And luckily, it's most prominent in the ultra cycling disciplines that the competitive advantage from strong psychology is felt.

My first learning point I have found the more I ride, actually makes total sense to something entirely different, that I think almost all of us have experienced young and old. Long journeys. It's what I like to call the 'Are we nearly there yet?' effect.
Put simply, distracting myself away from thinking about the specifics of riding, how long I've been riding for, how long I've got left, actually makes me feel less pain in my legs and the rest of my body. Distracting myself from what I'm doing entirely and riding on autopilot, seems to make my brain not engage with riding pain and it's particularly something that I can employ as a strategy during the 12 Hour Static Cycling WR attempt on the 10th of March. For other races, the scenery can be distracting. But even trying to think about something completely away from anything to do with the ride, does wonders for that feeling, that time is flying by.
It now makes sense to me, why, when I was a child in particular, long journeys where I did nothing but stare out the window and at most listen to music, meant long car journeys like Glasgow to the Isle of Skye, felt like they took an absolute eternity. It's apt then, that as I write this, coming back from my physiological testing at the Human Performance Unit in Essex, on the train from London to Glasgow, I've just realised that 3 hours have passed and I don't know where they have gone. I haven't looked at the time or been paying much attention to what station we've stopped at, but it's 3 hours into the journey already and I'm about 2/3rds of the way to Glasgow.

I don't know for sure, but I think in essence, what's happening to me, is that I'm just hitting a steady level of pain that then becomes normal and once I've got used to it, my head is free to wander and pass the time more quickly as well as not focusing on pain.

The second aspect to what helps my riding psychology, is that I know, that if I only do something for myself, I'd quit earlier than I would if I was riding for a team or a cause. So the fact that I'm representing a group of people, who I identify so closely with, I know will make my riding stronger and makes me more determined. Maybe even completely bloody minded about refusing to quit.
What that equates to, is in those little moments when your body hurts, you push that little bit harder, or don't drop a tempo, even if you might want to.

What affects this, is the little stories I've stolen for myself, from meeting some of the most remarkable people you'd ever hope to come across in your life. These are my friends and fellow patients alike, that have been through a far harder journey than myself with their epilepsy, but being the most graceful, erudite, generous people you could meet, despite their epilepsy. My friends Georgia and Andrew for example, far surpass my intellect, both with Law degrees and they never cease to continue to inspire and amaze me in equal measure. The patients I was treated with, continue to ground me with their courage, dealing with sides of epilepsy I didn't have to. They push me to even conceive of where they find their courage to deal with what I didn't, whenever I think about them. Incidentally, they also push me to try and be more courageous too, in other ways.

That brings me onto the last aspect of my riding psychology when it comes to ultra cycling. I've already tested my mental breaking point, during the Race Across America, and I didn't break. But there's a very good reason I didn't and it means that someone will have to literally drag me off my bike before I don't finish any ultra cycling race. To put it simply, even if I fail, I'll do it by finishing the time I was supposed to ride for, or make sure I just get to the line at the end of the race, if it has to come to that.

How this works, it extremely straight forward. I have a hell of a reality check when it comes to feeling sorry for myself and it goes back to those 5 years I spent in the Sick Kids Hospital in Edinburgh, between the ages of 9 and 14. I can only begin to explain how lucky I feel to be one of the eligible 5% for corrective brain surgery for my epilepsy. The fact that on top of that, even when I was having about 4600 seizures a year large and small, but that in Ward 7 I didn't feel ill, I hope demonstrates how remarkable some of the other patients were and still are in Ward 7.
It's a hell of a thing to think about in retrospect: A young man and a fellow patient in the same ward, incredibly poised, funny and dignified, while at the same time being wheelchair bound, wearing a seizure helmet, due to the severity of his epilepsy. I can't fail to think of him when I need to put things into perspective. So while he was such an awesome guy in the way he conducted himself, what he was dealing with was huge.
He was wearing a seizure helmet, while I wear a bicycle helmet. I can only think to myself, that since I have the opportunity to raise awareness for how to deal with his, and my own seizures, I should grab it with both hands. It's the only way that I can repay him, for the debt of using his inspiration to dig myself out of a psychological hole, by keeping riding and challenging the stigma that we both experience.
In case anyone asks, that's exactly why I still feel a debt of gratitude I need to repay and why I feel finishing RAAM isn't enough to repay it.

So there you have it.
While my medication may put me back more training hours, it's actually the fact that I have epilepsy and belong to the epilepsy community that is my competitive advantage.

It's quite literally, all in my head.