Thursday 10 October 2019

Thank You And Goodnight

Before I was given the honour or carrying the Olympic flame, before I started a journey of endeavouring for world records on my bicycle, I could have never thought I would still be writing my blog all these years later. It may not have been lost on many of you that I haven’t been able to write as frequently as I would like, but it feels like the right time to bring my blog to a close.

It’s actually a coincidence that I’ve been writing this post so close to World Mental Health Day, but it’s not an accident that I’m posting it today. One of the things I think we shy away from talking about is how epilepsy affects our mental health, the medication impacts and the fact the stigma of epilepsy can make us feel down.

But at the end of the day, while the epilepsy and indeed life will challenge you, push you to be someone you might not want to be, get you down… there are those in life that will pick you back up.
These people are like shining gems. Cherish them. 
What they’ll do for you is give you the perspective you need to realise what’s important in life. Because life isn’t always easy, it’s full of ups and downs, set-backs and triumphs. But if you can step back and find peace even for short periods, you’ll realise that some things in life are trivial. You’ll realise who should be truly important to you, or someone who is little more than someone that you “just know”. You’ll realise what should be important in your life and what is something that’s no more than a distraction.

I make no secret of the fact that I’ve struggled with my mental health. The reality is that while my epilepsy could be tough, even if it changed the course of my life, it was the mental health side effects that really affected me, even if I didn’t know it at the time. It’s been the struggle of my life. 
But it was the people along the way that helped give me the strength I needed to push through the worst side effect of all my epilepsy medications – Depression.

It took two shining gems in my life to know what depression was – to know that you can’t just snap out of it, that it takes work and time. Over time I’ve met shining gems who’ve made me reflect on who I am, who’ve made me a better person and made me the person I want to be or work towards being closer to the person I want to be, even those who have been role models that made me realise that I wanted to be like them. There’s been those shining gems who’ve given me the second opinion I needed and who’ve introduced me to a new way of thinking about my mental health.

Two years ago, I started on a path of a different kind of treatment than simply adding more medicines to my cabinet. I didn’t want to be medicated for the effects caused by my medication, so I stopped taking the anti-depressant drugs I was on. I can’t lie it was tough coming off them. The cold turkey style side effects of heart palpitations, light-headedness, feeling physically weak were horrible. Not ideal when you’re trying to play hockey in goal and attempting to save penalty flicks!
But I got through them after a month or so and started Psychotherapy. Sorting through and making sense of all the baggage in my life that was stuck in my head, after three decades of mental chaos. It changed how I looked at life dramatically, but I also felt like I needed to rely on those sessions too. I was afraid if I slipped out of the net of being in the system, that I’d be back to square one. But then something amazing happened. Through yoga, I started meditating.
As I was just about to start a new round of Psychotherapy, I realised I didn’t need it anymore. I realised that I didn’t need to be in the system to feel better. I realised that I could be my own safety net. I’ve made a lot of strides forward in my life with my health, be it physical health, neurological health or mental health. I can honestly say barring the brain surgery that changed my life, it’s been the biggest step forward I’ve ever taken. The irony was I fell into meditation by accident and never saw the impact of what it would do coming.

I still talk about things that are getting me down with my friends and family, but I rely on it less and less. In the same way I’ve come to realise that being honest with yourself is, as important, if not more important than being honest with others. But as I’ve gone through the journey over the last couple of years, I’ve realised how much a small number of people have changed me in the most incredible way over the course of my life. To them, they may not even know they are, but I don’t think I could ever thank them properly for what they have done. For being open about their own struggles, for educating me, for giving me perspective and for giving me strength.

When I slow down my thinking now, I’m not ashamed to say I was just chilling out when explaining what I might have been doing last night to others. I don’t care if someone thinks I’m boring, because how I feel in myself is what I see as the most important thing to me. When I truly calm myself I’m able to really think about what’s important and what’s not. You realise that the white noise of social media isn’t important, it’s just something to do. That creating a life for yourself is the most valuable thing you can do and distractions from that can be wonderful, but that you shouldn’t rely on them for happiness. You realise that nobody should rely on someone else for your mental well-being, that only you can actually control that. You realise while you can’t control most things in life, you have the power to control how you react to them. You realise that at the end of the day, you only have one life to live and to make the most of. 

All I want to do is aspire to act with dignity, to make a life for myself where I derive my living from my passion and a life where I surround myself with people who will be there for me, like they know I will be for them.
It took me a long time to realise that I shouldn’t aspire to be a certain person on paper, that it was the qualities of people who were in a role I admired, be it at work or in life, that was worth aspiring to. So instead of chasing a job title, I want to chase the qualities of hard work. Instead of sitting on the side-lines and admiring from afar the people who are positively changing the world, I wanted to have the resilient, generous and kind qualities of those who were instead. It didn’t matter about how many compliments I got for doing something, unless I truly felt in my own heart that I deserved them. It sounds odd on paper, but what I mean is it’s not the simple fact you’ve done something, it’s what you did to achieve it. Even if things didn’t work out for me, if I could be proud of the way I acted, if I could be proud of the process, then that’s the real triumph. 
I truly believe it’s not the filter other see you through on social media, it’s the light and shade in your life and how you deal with it that’s important. That’s the standards I’ve realised I want to hold myself up to. At the end of the day, that’s what would affect my self-esteem and as a result my mental health.

So given this is the last blog post I’ll write as the Epileptic Ultracyclist, what can I say I’ve learned?

Well… I’ve learned I’m stronger than I thought, even if it’s taken me a while to truly believe that in my heart.
I’ve learned that you can’t simply rely on science, that ultimately people make the difference.
I’ve learned that slowing down and taking time for myself is as important as looking after others by trying to raise awareness and money, and I really hope this lesson isn’t lost on people. I’ll still strive to support where I can, to attempt world records and to ride in purple. But I feel it’s time, after over 7 years of blogging, to pass on the mantle.

I hope whoever picks up the baton can learn from my mistakes as well as triumphs. But know that without the mistakes that I made along the way, I wouldn’t be who I am either.
Life is always going to be full of ups and downs, but when you take a step back, when you slow yourself down, you realise that your head doesn’t need to be full of ups and downs and ultimately the lens you see your life through dictates if it has been a triumph or not.
Just like the level of pain you experience on a bike, it’s you who chooses how much pain you want to put yourself through, how you interpret it and how it affects your mentality. It’s just a matter of perspective.  

All I know for sure is this:
If you want to achieve something or change an aspect of your life, you only need start.
Start a big task by trying a little part of it first, starting taking control of your mental health and your epilepsy by asking for support, start spreading awareness by wearing purple or by talking about how to treat seizures.
Sometimes what seems like climbing a mountain in your head, is actually just climbing a little hill once you begin.  

I hope that my last post provokes someone, somewhere, to start their own blog about epilepsy. We need awareness more than I can say. 
What people without the condition don’t always realise is that even as someone who doesn’t have epilepsy, just understanding the condition can change someone’s mental health. It can improve our well-being. It can make us feel safer.

It could even save someone’s life.

Monday 20 May 2019

Knowledge Is Power

Knowledge is power, or so the saying goes...
But in this case your knowledge is someone else's power.

This National Epilepsy Week in the UK, the campaign is focused around Seizure First Aid and for good reason. Every time someone with epilepsy does something as simple as go to the shops, if they're not surrounded by people who would know seizure first aid, they put themselves in danger. Of course our automatic response as human beings to a dangerous situation, is to try and avoid it or to make it safe. But without help from the people we're surrounded by, we can't be safe. So the default situation would be isolation of a safe environment like home.

I guess for me, my power, my superpower in terms of my epilepsy, is my independence. I'm not as independent as most of the population, because morally I decided to never drive again, but in that sense my bike is my cape. Seizures are most accurately described for me as an annual event or bi-annual event of late, I'm very very lucky. But I don't believe people who have epilepsy should be lucky on a sliding scale. I believe that we should all be equally lucky that we can have the confidence to go out into daily life and know we're equally safe, because seizure first aid is as commonly taught as how to how to ride a bike.

To the politicians in the UK and anywhere else for that matter, I'd simply say this:
Put epilepsy first aid in the first aid curriculum. The 1 in 100 that have epilepsy will have far more seizures than require resuscitation in their lives, so it's highly likely that if you do encounter a first aid scenario in public, it's someone having a seizure.

For those of you who want to help people with epilepsy, I propose this:
You don't have to donate a penny, you don't have to learn anything taxing, just the following simple steps...

If you see someone go into a seizure look at your watch.
- Even for people used to seeing seizures time can go far faster than normal.

If the seizure lasts longer than 5 minutes, call an ambulance.
- It could save somebody's life.

Put something soft under the head of the person having the seizure.
- For people with epilepsy, it could be the difference between a few hours and a few days recovery.

NEVER put anything in a person having a seizure's mouth.
- It could turn an average seizure into emergency dental surgery or worse and you could injure yourself into the bargain. You also can't swallow your tongue.

NEVER hold anyone down.
- While your instinct might be to want to stop someone from shaking, you could be grinding their bones into the ground.

Move anything dangerous out of harms way.
- This one seems fairly common sense, but obviously move dangerous objects out of harms way. Only in real danger should you move the person having the seizure, ideally just provide cushioning around them if possible instead.

And that's it. That's all you need to know to keep someone having a seizure safer. If you forget, just remember my own personal motto: 'keep calm and put something soft under my head'. If you remember that and the 5 minute rule, you're doing a great job. But it's that simple. No complex explanations as to exactly where to position your hands or remembering the recovery position, just stay with them until the seizure is over and they're safe again.

While I won't ask anyone to get on a bike for 12 hours, I will ask you to do one thing after reading this blog, however, I and many others like me who have epilepsy are extremely grateful to you that you have read it... but please share it. Retweet, Facebook share, even pop the blog link in a WhatsApp message, or put it on Instagram, by doing that, you really could be giving all of us our confidence to be independent back.

Thank You.

Tuesday 15 January 2019

A Gap Year & A Medical ID

Any regular readers of my blog (I'm very grateful to you all incidentally), will have noticed it's been a while since I've posted anything here. In honesty, I'm not totally sure where 2018 went and how it managed to start and then end quite so quickly. But it was an interesting year none the less.

One of the questions I've been pondering is "have I done enough yet?", without really knowing what enough is in terms of my riding. On one level, I felt that through the publicity generated by the two 12 Hour World record attempts just over 18 months ago now, then as a result the funds for my two chosen charities, that I had for the time being. It was incredible and I can't begin to explain how much I appreciate every penny and column inch that was given or written.

Being able to give two charities that have had such a profound impact on my life a five figure sum each, was truly something worth all the training and ride pain (then hospital visits) for. The first, the Static 12 Hour WR attempt, ended in Hyponatremia, the last time I had a seizure and then Rhabdomyolysis. The second, the Indoor 12 Hour Track WR attempt, with a fractured radial head in my left elbow, which I realised after the trip to the hospital, I had ridden the entire 12 hours on the velodrome with, having sustained it 15 minutes before I had started the ride.
There were two rather interesting things to come out of those two trips to the hospital though - firstly I didn't develop  Hyponatremia because I had Epilepsy, I developed it because my nutritionist wasn't on the ball. I definitely didn't develop a fractured elbow because I'm Epileptic. That was caused by being a plonker who hadn't put her rollers in the right place warming up. Secondly though, the temporary pain was worth it in the end to finish both rides, because like with any cut or bruise from a seizure, I healed. But just over £22,000 could make a difference to my two mid sized charities I had nominated for the attempts.

To those of you that donated through the blog - I can't thank you enough!

But the question still remains was it enough?

The short answer is I don't think it'll ever by enough by my own standards, because what I was given age 14, changed the life so dramatically that I can honestly say conclusively, I wouldn't be able to live independently without my surgery and how can you ever repay a charity that enabled you to be an independent adult?
The longer answer, is that while I'm able and there's a record to go for that I think could raise the profile of epilepsy and help diminish the stigma, I'll never be permanently in retirement from my Ultracycling.

There's a simpler measuring stick for all of the riding though, which is government change. If I can use my riding (or need to ride more to use it), as a way of demonstrating a point about the need for changes in the law in the UK with regards to employment and driving, I'll always keep fighting and riding.

In the last year, my friend Holly, who is also an incredible epilepsy advocate, has helped me become aware of government consultations about our condition. When we went along to the event together, I was able to make connections I hope to help facilitate asking formally for the change that's needed. But in reality it's just education and awareness that can make that change too.

That's why I propose this...

If you're in a position where you can ride your bike, run, swim, whatever, you have epilepsy and are able to talk about how your condition hasn't affected your ability to do what you love, then talk about it.
Write your own blog, start your own twitter feed, facebook group, YouTube channel even! Comment below and spread the word. But don't be afraid to do it.

So what's my excuse for being so busy I couldn't write a post and say so much as "hello"?

Well I'm beginning a new, different chapter in my work life, at the beginnings of starting a new bicycle company and have been able to take some time to enjoy my other love - music, taking in some festivals when I've not been working.

Has my epilepsy been a factor?
Yes and no...
I've gone the whole of 2018 and not suffered a single seizure, in fact I went the latter half of 2017 without one either. But the Hyponatremia and Rhabdomyolysis I mentioned earlier led to an alarming discovery - that a girl in the Portsmouth had died from a drug overdose at a music festival, suffering the two conditions in the same order I had previously done after the 2017 Static WR attempt. It was a real wake up call that made me so aware I could be misdiagnosed as having a drug overdose at a music festival if I ever had a seizure. I have never done, nor will ever do drugs not prescribed to me. So from now on I always wear my medical ID as my last bit of wrist jewellery when I'm dancing away to Swedish House Mafia, Eric Prydz, Armin Van Buuren or many of my other favourite DJs, that helped me keep my pedals turning during my world record attempts.

      ...And if you were wondering I still cry when 'Don't You Worry Child' is played at festivals thanks to a certain 12 Hour WR attempt playlist (and my Mum).

Sunday 27 August 2017

A Soundtrack For Life

I can honestly tell you, that without exception, my favourite part of riding the bike, is at speed listening to my favourite song of the moment. There's nothing more uplifting than hitting a downhill, wind in your hair, while your favourite song is playing. Personally, it's the one thing, more than anything else in life, that makes me feel alive.

Music isn't just an important part of my life though. It's also a hugely important part of my riding - it's a massive performance enhancer. The mix of the two can become a fine art, in the case of Spinning. It's always a challenge to find a playlist for a Spinning class that works for everyone in the room, but part of the reason I find that you become a regular with a certain Spinning Instructor is that their choice of music, clicks with you and makes you want to ride harder.
It's a great pacer as well. You can tell yourself, "okay so just the last verse to go, I can do this". Then you get the riff of another epic song hitting you as it comes on and you go again. You may even find yourself in a lull, finding that certain songs you've maybe just heard too many times, lose their effect on you. But you know that there will be a song, that would make you want to just get up off your seat and dance under normal circumstances, that makes you dance on your pedals in the case of a bike.

I find that music has the power to make me approach my riding with more grit and determination as well. There are songs like Tove Lo's 'Scars', that's lyrics are so close to home, that they feel they were describing my situation at that point. Then there are those songs that have the power to make you feel connected to someone. In one case, Swedish House Mafia's 'Don't You Worry Child', given the effect my mum has on me when I ride. Seeing her pride makes me want to ride faster and at a point during the 12 Hour Indoor Track ride, I remember vividly, seeing my mum beaming at the side of the track as that song played.
Maybe it was a release of all the tension from waiting to hear from the UMCA about the result of my record attempt and finding out I out I had picked up four records, the day before I saw two of the three DJs that made up Swedish House Mafia play together at a festival I was going to... but the moment Axwell /\ Ingrosso played that song, their song, I was in tears. Of course, I chose to play that song during my 12 Hour ride, so I'm not sure if it's the association I now have with the song, or the song itself, but the one thing I know is that music has a real power to move anyone.

Usefully for someone with epilepsy, it has the power to de-stress me, just like my bike. When stress could be a potential trigger for seizures, you know that's a really really good thing.

One of my fondest memories of being a patient in the Edinburgh Sick Children's Hospital, was phoning up Radio Lollipop to request a song and for the DJ to give a shout out to my ward - Ward 7. It seems very funny looking back on it now, but when you're 9 or 10, you felt like you were famous, hearing your voice on the hospital radio, even if it was only playing to a couple hundred people... thinking about it, many of them were probably sleeping as well! But it helped cement our sense of comradery with fellow patients who were in the beds next to you too.

For those that are curious, my Spinning love transferred into my record attempts as well.
Because I have the ability to analyse song's Beat Per Minute or (BPM), I deliberately made up a playlist of music to either ride just above then just below, or right on hitting my pedal stroke, or Revolutions Per Minute (RPM). I knew that I could ride hard for a period before recovering and then go hard again. So as long as my average BPM was the same as my required RPM I needed to hit to be on schedule, I knew roughly, how I was doing with regard to my targets. Of course, there were certain songs that I had ready for when I was in periods of feeling great and in charge of the ride, in the same way, that there were songs ready for me to dig myself out of a mental hole of feeling like I'd never nail the ride.
Each song was a trigger to help me zone in on what I needed to find to improve or maintain my riding.

If you need to find something that will make you feel stronger in yourself, or even just keep on the high that you're enjoying... you can guarantee there's a song for that!

And finally, particularly while talking about Dance music, I know a lot of people question those of us with epilepsy, asking if I can go to festivals, gigs and clubs, because of the lighting. I can assure the majority of the gig, club, festival going public that don't know much about epilepsy...

...that actually 94% of us won't be affected by any kind of flashing lights at all, and we may even come back from listening to music healthier.

(As long as we get plenty of sleep! Zzzzzzz......)

Sunday 13 August 2017

The Longest Ride

It's hard to explain what my bike means to me. The way epilepsy is disabling outside of its stigma, in terms of transport, my bike is an extension of me and my way of life. Without it, I wouldn't have my independence, be able to get to distant places and most importantly, as I found eventually, use the inspiration I know from others with epilepsy, to raise awareness of our condition with it.

My bike is the difference between standing still in life and fulfilling a promise I made to myself more than 10 years ago to try to not let epilepsy be stigmatised.

It's done something else too, but not in the way I expected to do it. I've always been pretty hard on myself and found it hard to take possession of any of my triumphs, but for the first time in my life, I've felt proud of myself. It's the first time that I've felt like I couldn't have done any more with the circumstances I was presented with, looking back at the ride. It's the first time I've felt that I've really, properly done my condition proud, in my own heart. Ironically I didn't do what I set out to do initially to do and break the incredible Anna Mei's 100 mile and 12 Hour records, but it was the fact that I came through more to finish my 12 Hour Indoor Track Cycling world record attempt, that has given me the real feeling that I've pushed anybody's physical limits.
It was made tougher, because just before I started the ride, I slipped on my bicycle rollers during my warm up and gave myself a dead arm, or so I thought.

The ride was full of so many firsts. It was the first time a British rider, male or female, had ever attempted the 12 Hour Indoor Track Cycling world record, or the 6 Hour, or the 100 mile for that matter. It was also the first time too, that a woman had ever attempted the new Indoor Track Cycling UMCA 6 Hour world record and Guinness 8 Hour world record.
I can tell you conclusively now that as a ultra-marathon rider who has completed 3 major record attempts, in the first Scot to complete RAAM, picking up the British 12 Hour Static Cycling record at 340.04km in March and now completing the 12 Hour Indoor Track cycling attempt, that ultra-cycling is a hugely mental sport. You can train like mad, but if you can't manage the pain of the ride and learn how to ride for 12 Hours or longer in your head, you'll never finish a 12 Hour.
I knew I was down on the 12 Hour world record when I passed the second target of 8 Hours. Of course, I could have stopped. I can't lie, it passed my mind, but it was the motivation of my epilepsy and not letting the kids and friends who inspire me with their own epilepsy and other neurological conditions, that kept me riding, just as it did during RAAM 9 years ago.
The ride was hard where there were big gaps between record targets, I felt a huge surge of energy; a second wind, between the 6-hour mark and the 8-hour mark. A simple 2 hours in the grand scheme of the ride, between completing one target and another. But there seemed like an endless amount of time up until the 6-hour mark. It was just one gradual pain increase after another for the first about 4 or 5 hours. The pain is as hard to describe in the moment, as it is to describe my old Petit-mal auras. The most accurate way I can describe it, is like climbing a set of pain stairs... you would get used to one level of pain and the pain would plateau for a short while, where I would get used to it, before having to climb the next pain level, and that would hit you like a train. It's not easy. Eventually, I got to a level where nothing could get any more painful. Another less welcome first, was my first experience of 'Shermer's Neck', which is a condition that affects the neck muscles being so fatigued that they can no longer hold the head up properly. I had heard about it in terms of Solo Race Across America (RAAM) rides but never experienced it myself before the 12 Hour Indoor Track attempt.
I know the true meaning of getting your head down and just pushing on now. It started around hour 11 and wasn't pleasant, but thanks to my crew, it was managed with support taping attached to my helmet straps behind my ears, in order to run the tape down the top of my back to help a little.
And it did... I was riding half lap sprints before tucking into my aerodynamic position on my Time Trial bars. But something odd was happening to my position which caused my neck issue, in that I had to mostly ride in the aggressive, punishing position in my Time Trail bars, because I couldn't hold myself up for more than half a 250m lap with my 'dead left arm' on the outer bars.

I finished my 12 Hour Indoor Track Cycling ride with a total of 1226 laps, 306.5km and after eventually going to the hospital 4 days later, I found out, a fractured Radial Head and twisted elbow in my left arm too. It wasn't a dead arm after all.
I guess when I found out that I had ridden the entire ride with a fracture in a crucial part of my body, I realised what I had actually done.

But the best part was still to come...

As a result of the ride, it is a cyclist with epilepsy that currently holds the 100km, 200km and 6 Hour Women's UMCA world records.
It will always be a rider with epilepsy that was the first Briton to attempt the 100 mile, 6, 8, and 12 Hour Indoor Track cycling world records and we're still waiting on the result from Guinness as to the 8 Hour Indoor Track cycling world record.
As a team, including help from the crew and the publicity generated by our PR company Big Partnership, we've managed to raise over £23,000 and counting, with the bike still to be auctioned for our 2 charities - Epilepsy Action and the Edinburgh Children's Hospital Charity.

It was the most incredible day, where so many people, including world class athletes I hugely admire, were cheering me on. It's hard to explain what it feels like, when the guy who is your iPhone screensaver in Gordon Reid MBE starts recording you on his phone, or when two of Glasgow Warrior's rugby team, that you're so used to cheering on, are cheering you on with another of Scotland rugby's finest in Jade Konkel and there are so many thank-yous that it's hard to know where to start.

Dolan, Fast Forward Wheels, Miche and Velotec are a good place to begin, they were responsible for the incredible kit and machine that set so many records. The kit and bike not only gave me the ability to compete, but also made me feel like a truly elite rider. A joint work of spectacular engineering.
My support from Boiler Room Fitness in Glasgow - my Spinning studio that didn't just get me fit, but helped me learn how to use my music to get the most out of my riding I can't thank enough. I'll never forget one of my instructor's Sheena's message: "Show me what you're made of!". Words to live by.

I will always know now, that a rider can never thank a great Crew enough for their support, given free of charge on the day with a shared aim to complete the ride competitively. And they were truly great. From Allan our physio taping me up and Marzi our team doctor keeping me riding, to John sprinting up the ramp of the velodrome onto the track to save my rear cog after I trapped my earphone wire in with the chain. Every single one of them went over and above the call of duty, not just in doing their jobs but supporting each other and in Seb's case extra jobs he didn't sign up for. They didn't just do their own job, but coordinating the cheerleading that got me home. Where one crew member stepped down, another stepped up and then some.
My family kept me going more than I can say. How could I thank my Crew Cheif and dad David? I couldn't have finished the ride without him and I couldn't have started the ride without him either. Seeing my mum tearing up as I passed the 6-hour mark but smiling with pride, only spurred me on more, because of the inspiration she is to me. The same goes for my Neurological family, or as my young hero, Abbie calls hers - her 'brain buddies', that I'm incredibly proud to be a part of. We met when I visited Ward 7 in the Edinburgh Sick Kids Hospital and despite her own battles with fatigue, she cheered me round, having undergone 7 major brain surgeries in 9 months herself, starting less a year before the ride, she is inspiration itself. My brother Phil and sister in law Sonja, even stepped in to expertly run my social media feeds during the whole day. All the more special when you realise that crew member, Paul and Phil have their own experiences of their epilepsy, be that big or small.

But there's one very special thank you to a woman, that didn't just coach and mentor me how to be a real track rider and deal with pressure, but also stepped up to make sure my nutrition kept me well and really allowed me to show what people with epilepsy are capable of. Charline Joiner, isn't just a great coach, nutritionist and mentor, but she's also an incredible inspiration, that made me realise that coming back from injury and succeeding is possible. She has a story all of her own that can't fail to inspire and made me feel like I had the best safety net you could ask for, should I slip and fall.

Of course, I didn't realise that slipping and falling wouldn't just be a metaphor, but I truly hope now, that I've given an account of someone with epilepsy achieving big things in one of the most physically gruelling conditions you could put someone in.

I hope the ride serves as a lesson that demonstrates what we're capable of. That our resilience and shared inspiration makes us stronger and more robust, and not delicate and to be wrapped in cotton wool. Time and time again I find people with epilepsy have the trait that they're strong and bounce back far quicker than people realise from seizures. We do it in hours, not days and we can juggle more than many realise, which brings with it, its own experience to use in life.

And so...
There's one final question I would ask if anyone is in a situation where an individual with epilepsy is involved and they're not sure if we're 'able' to do something...
Could you ride a fixed gear track bike for 12 Hours, 306.5km and 1226 laps?

If the answer is no, but you're not sure how able people with epilepsy are, then maybe it's time to think about epilepsy differently, in a more positive light.

From my experience of over 25 years, our epilepsy makes us more capable, not less.

Sunday 16 April 2017

Introducing... Epilepsy Forward

I spend a lot of time at the moment explaining why I started Epilepsy Forward and how I got into ultra marathon cycling. It's not exactly a normal response to a question of what you do as a job to say, "I'm an ultra cyclist". People's eyes usually widen and then ask more.
But then that's the point.

Epilepsy Forward was started because I felt like I needed to repay a debt, and in doing so could possibly, hopefully, make things better for people with epilepsy in the process. But drawing attention to a condition that people usually walk away from, would take something that stood out. It made sense then, that being a cyclist, partly to use as a kind of meditation from life, partly because I made the choice never to drive again, that if I was going to do something that would stand out as a cyclist, it would be ultra marathon riding. I wanted to be able to say that someone with epilepsy could hold some of the toughest cycling records in the world, and in the absence of seeing someone else doing it with epilepsy, felt I could take them on myself. That was the thought back in 2008 riding the Race Across America - to raise awareness, and it did a little, but not to the extent that I could have hoped. In fact it turned out to be more of a platform for honours such as carrying the Olympic flame, and that only reinforced my feeling of debt to others with epilepsy who had inspired me, that didn't get lucky being eligible to have corrective brain surgery.

Epilepsy Forward started simply as a team name for the attempt on the 4 person mixed Race Across America record, which at some point we hope to break in the future. But even as a RAAM finisher myself, I know there's far more to ultra marathon cycling, than simply the Race Across America. Arguably the Solo 12, 8 hour and 100 mile records aren't simply some of the biggest blue ribbon records in ultra marathon cycling, but in cycling period. So that's where the project has evolved to now.

I believe personally, that to change opinions, awareness, even laws, sometimes you have to do something dramatic and headline grabbing, particularly when so little about epilepsy is covered by mainstream media. If it is, it's usually a caricature of the condition, not the people I know that live with the condition every day. I think that side of the condition is easier for people without an understanding of epilepsy not to talk about, because it's complicated and varied. But the simple fact is that, if anything, that's exactly why we should talk about it.

I can't thank the BBC's Adventure Show enough then, to allow me to talk about it, warts and all. Epilepsy can sometimes be massively overcomplicated, but equally incredibly simple too. For example there are large numbers of people with the condition whose only hinderance to them living a normal life is the stigma of epilepsy. There are of course cases where the condition can be extremely complex and involve huge numbers of seizures. But then to me, what doesn't seem complex from my experience, is the bravery of the people who fall into both categories. It's simply inspiring. But like most medical conditions there's a scale of it's severity, both in terms of how the seizures manifest themselves and the frequency of seizures someone with the condition is experiencing and that isn't simple, but should be known about.
While I'm keen to go into more depth in my next few posts about why epilepsy itself isn't straightforward, when trying to assess the impact on someones life, despite it currently, in the most part, all coming under the same extreme umbrella, I'll leave that for another blog.

In introducing Epilepsy Forward properly though, I should talk about the people who enable any of the riding to happen. My crew team.

I may be a Solo rider for the next 12 month's efforts, but there's no way on earth I could do what I'm trying to do alone. The people who make up the crew team are completely extraordinary in every way. From a Coach who as her own incredible story of overcoming major injury to compete at the highest level, as well as major world medals to her name, the magician of a Mechanic or the best Crew Chief you could ask for, to the Utility Crewman, who has his own experience of epilepsy and inspires me in his own way, even if he might not realise it, by teaching me more than he realises.

Each one of them are outstanding in their own way, be it depth of understanding, compassion, ability or incredible knowledge, they all will play their part in pushing towards a common goal. My job, is at least to push myself to train as much as possible and leave no stone unturned, to make sure that I don't let them down.
While a becoming a national record holder in the 12 hour Static Cycling discipline, is a start, I believe that with the help of the people involved in the team, I can do more, which I hope will raise more awareness and challenge the stigma more.

So that's Epilepsy Forward. The project that I hope will not only grow in the future, but in the meantime will push epilepsy knowledge, awareness, research and even propel a bike, forward.

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!