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:
http://uk.virginmoneygiving.com/Katies8HRand12HRWRAttempt
....Oh, and happy Purple Day!
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:
http://uk.virginmoneygiving.com/Katies8HRand12HRWRAttempt
....Oh, and happy Purple Day!
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