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, 27 August 2017
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.
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.
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