Performance Dehancing with Drugs?

One of the most common misconceptions I hear and get asked about my ultra-marathon cycling and epilepsy, is around its potential to cause me to have a seizure. It's not only something that doesn't affect my epilepsy, it's something from my own experience, that has actively helped it. I have been previously told that mental stress, could contribute to lowering my seizure threshold, i.e. increasing the likelihood that I could have a seizure, even if the risk is still very small. Sport, in particular the solitude and endorphins I get from my distance cycling, not only makes me healthier physically, but also makes me happier.
While at university, I was told during an incident of having a double fractured pinky finger, that once I had started riding again, when it had healed, I was as my friend put it, "less irritable" and "seemed happier". Although they didn't want to tell me at the time when I was off my bike, it certainly made sense, that I would be healthier and happier when I was training and riding. In a way, my bike riding seems to have served as an TLE epilepsy medication in its own right. To my knowledge I've never had an epileptic seizure while training by myself, away from any stress whatsoever of riding with groups and with nothing but my riding and music to focus on.

But given my love of sport and dislike for having to take medication for my epilepsy in the first place, you'd understand, that I took an interest in the BBC report by Mark Daly yesterday, which if true, shows disgusting abuse of medical conditions to cover up performance enhancing drug abuse at the hands of Alberto Salazar.
The jury is still out conclusively on what the situation is with the Nike Oregon project coach and some of his athletes. But it did spike my curiosity around something which has previously happened to me, that was rectified by my doctors, but that made me think certain drugs, could also dehance physical performance.

While my medication, first and foremost controls my epilepsy, it has also previously had to be adjusted to a lower dose, because it seemed quite simply, as if my body couldn't deal with the dose. I remember vividly, after lying down, I moved into a sitting position and began seeing stars, experiencing brief blurred vision as well. During that time I was also noticeably clumsy, not within any normal level I had ever experienced, where I would bump into things far more than normal and was more tiered. As a result, when I went to go and see my consultant to explain the situation, they halved my dose of one of my two medications, and the side effects, have ever since then, stopped completely.

I know of so many incidences where not just with epilepsy, a condition's medications could make someone more tiered, fatigue more quickly, or even just be so sleepy, they couldn't compete in any physical activity at all. But what angers me more than feeling that even half my dose of epilepsy medication which was making me feel unwell previously, might mean I would need to train even harder, or work through a bigger mental or physical barrier than someone without a medical condition, is the idea of cheats creating fictional ones so performance enhancing doping could be undertaken.


I've spoken before about my distain towards Lance Armstrong on this blog, and that regardless of how famous, or infamous he is, I always hope he keeps well away from the Race Across America and is never allowed to compete in the ride. But given the more recent report about drug doping in the athletics world, it feels as if something more drastic needs to be done.

At present, if an athlete in any sport needs a TUE (Therapeutic Use Exemption form), to allow them to take a drug, like if it were in my case, for my epilepsy, they would need a doctors report that they have a medical issue in the first place before they can obtain a TUE form.
I love sport and all that it can stand for when it's clean, but the idea that fictional medical conditions could be created for the use of cheating, makes me sick to my stomach. Even more than regular doping itself in fact, for the simple reason that it shows such total disrespect to people genuinely suffering with medical conditions.
Mark Daly's report, also explored athlete's medical passports too, but the point was made during the film that if someone who is ill, requires a drug which is performance enhancing, then shouldn't they just rest up and not compete in the first place? Sometimes the threat of a punishment, can be used as a preventative measure and it's my belief that anyone caught doping, should be given a ban from competitive sport, even if it goes into the pro-am category, for life. But it also occurs to me that rather than athletes in any sport using their own doctors to diagnose a condition which requires a drug, that could even slightly enhance performance, then they should go straight to WADA's doctors instead?

The medical community and the charities that raise awareness for them, should be outraged by any potential for the condition they work with, to be used falsely, to cheat in sport. I should also say, that as someone who could, potentially, be handicapped by my own medication when I compete, but who would continue to fight through it anyway if it was, that I would like to see people who abuse the system and medical conditions in this particular way, behind bars.


Why could we have to fight even harder, when there could be those who don't have to fight as hard, that get to make their ride even easier?

Permanence

One of the things I am most thankful for in my life, is that the epilepsy I had until I was 14, wasn't going to be the same ever again after undergoing Neurosurgery. The only thing that has stayed the same since Jan 2001, is that I will live the rest of my life, without parts of my right temporal lobe. It's just one of many things that I am eternally glad are permanent.

In life, there are so many things I love that gives me a sense of permanence, even though they may be in some cases fleeting. I have a great love of photography and many of my favourite pictures are of something, like an incredible sunset, that only last moments. It's the ability to capture the moment that I love however. But change can also be good, great even - laws allowing greater rights for people with epilepsy, increased awareness, so many other changes... However it can also be extremely damaging, life changing and disruptive, my epilepsy returning, leaving the police... I could go on.

One of the major things in my life, in anyone's life, that I made a conscious decision to stay permanent, is not driving. Yes I am at the mercy of public transport or others, to travel long distances, but it means that my bike is always the permanent fixture in my life, and honestly, I wouldn't have it any other way. The cycling community is a generous one and I've found becoming part of it in the UK and USA most notably, not only personally rewarding, but extremely helpful in my ambition to raise awareness for epilepsy.

To those that don't know a lot about the condition, it's not at all an obvious marriage, but it works. My helmet keeps me safer than I would be walking down the street and the kind of cycling that I do allows me to make a statement about the reality of epilepsy. I've heard so many people ask about the impact of cycling on my epilepsy, worries that it could adversely affect it, but it's those questions that allow an open conversation about it, which can only lead to better awareness and less ignorance. For example, last week I had to delete a comment on this very blog, because a commenter thought they would explain that epilepsy was a seizure disorder. It's not. It's a neurological medical condition. To call it a disorder, is not only an insult, it's also wrong.
Another question I get a lot about my bike riding specifically, is the understandable curiosity, that crashing and banging my head might make my epilepsy worse. It's not an unfair question, but the reality, is far from what people may think. Crashing on the bike doesn't affect epilepsy at all, unless it becomes the cause for a whole new type of epilepsy, which could happen to absolutely anyone, including people with epilepsy in equal measure and is still extremely rare as a cause.
A few months ago I had a seizure which left me scarred and bruised badly, but it only happened on the stairs, in the close up to my flat. I wasn't wearing a helmet and if I had been, if I'd just come in from a ride, I'd likely not have sustained any injury at all.

In a few days I'll be riding on a very temporary structure, that is the UK's first pop-up velodrome. Street Velodrome, have been generous enough to let me talk about my riding, but I'm under no illusions that there's a chance I'll crash, when it's something that seems a right of passage for most of the pros. One thing my epilepsy has taught me over the years, is to understand fear and how to conquer it though. The seizures I experienced were uncontrollable fear, but I can control how I react to things that make me nervous or scared and a lot of that steel comes from the bravery I've absorbed from friends and kids I've met that have epilepsy too. But while the event itself, will disappear overnight, it's my hope that I could leave a more lasting knowledge that people with epilepsy aren't fragile, or need to stay away from any form of exhaustion, or danger.

It's the kind of adrenaline rush on a bike I live for and I'd challenge anyone who believes that someone with epilepsy should stay at home and off a bike, to take it on.

You can't predict the future...

In life, it's easy to take the present for granted. It's far harder to live in the moment, but it can be magical if you can. Memories are sometimes at their best when something unexpected happens. It could be a song sung with friends that forms a bond, a moment of something unexpected from a stranger, or something said that you were never expecting to hear.

There were however two very unexpected memories of moments, that have paved the way my life would go ever since and unfortunately they weren't good memories - my epilepsy diagnoses and re-diagnoses.

The day my world came tumbling down, I knew exactly why it had happened, there was no need for a searching explanation. I had just had a re-occurrence of my epilepsy, and I thought in that moment, and the few days after, that I'd never have the same standard of life again. I wanted a purpose and I had found it as a Police Officer, but it had been taken away from me and I never thought in the week that followed that I would be able to find one again.

Life has a funny way of working out what is for you though. These days there's very few jobs that you have for life, so for those friends who lost theirs in the last week, I can only say this...

In the ten years after my seizure as a Police Officer, I have been to university, worked in politics, cycled across America, started a business, carried the Olympic flame and even found time to start a blog.
They are the highlights since I left the police, but there have been countless moments along the way that aren't just the normal 9-5 and that make everything just a little bit more interesting. I guess I would have had a very safe life, a very regimented one and looking back, I couldn't conceive of doing half of the things I have done in the last ten years, had I only been a copper. When life pushes you in a new direction, I guess you just have to embrace it.

Today I heard about the death of a very close family friend, an adopted grandmother if you will, and it reminds you of how precious life can be. Thankfully, my late Grandfather's partner had lived a good long life and it seems, died quickly and I think peacefully too.
I suppose my epilepsy wasn't the life sentence I thought it might be, and Daulcie tonight has reminded me to cherish the life I have. Things may change because of the hand you have been dealt in life, but it's still yours to cherish, no matter what road bumps you might hit along the way.

If I was to meet someone who had just been diagnosed with epilepsy, or just lost a job, I would say that it isn't all bleak. Life is what you make of it and things have a habit of coming along, that you hadn't planned for too, that add to what you have tried to make as your future.


I might have some restrictions on what I can do next, but I've enjoyed the times when I could live in the moment, even if it was just that. After all, sometimes life can be at it's best when the future isn't planned out in front of you.
So enjoy what you have, plan a bit if you can, but make sure you remember the things life threw at you that were just wonderful moments, however small, looking forward to the next time life will throw something else wonderful your way.

A fleeting dash of something good

I often find myself coming to my blog because I've had a dash of inspiration, a wonderful short feeling of something that has sparked me into reflection or sprung my imagination into life.
I don't know about you, but I just feel that if you get a feeling like that, use it, keep it and probably write it down.

I've found recently that my condition had affected my memory in the past before my surgery. But it's reminded me of the importance of writing thoughts down. People's mood changes with the wind it seems to me and as a result you can go from happy to sad or upset in a moment. I know that feeling down is far harder to get away from than the precious feeling of happiness or some kind of euphoria. But if you have a place to keep your thoughts, then to some end it could serve as a prompt for why you were feeling wonderful in the first place.

I can't advocate for this writing stuff down thing enough to be honest. Start a blog, a diary, even start to write a book, but if you find inspiration, then just try your best to treasure it.


My job at present, is a roller-coaster ride and I'm not even the person standing for election. Grounded, hard-working and kind politicians are really very hard to come by, but I've managed to find one and I'm seriously lucky to be working for her. It's really quite impressive when someone will let you die part of your hair purple for international epilepsy awareness day and work with it dyed. It shows a level of compassion and empathy that seems to be rare these days.
Last Monday too, marked the official departure of another wonderful politician. Laura Sandys is a real and true inspiration to someone with epilepsy. Only the second ever MP in the UK to be openly epileptic, she points to something that the whole epilepsy and cycling project is trying to demonstrate. Ability.
Some of the things that people with my condition are thought to not be able to do is astounding, but it's through people like Laura, that we can show that we are able to do some of the most demanding things possible. In terms of my immediate friendship group that have epilepsy, I'm not really the brainy one, I'm the sporty one. I have a good level on intelligence, but Georgia and Andrew both have Law degrees and I find them amazing. If I can try and attack the stigma of physical ability, they demonstrate that people with epilepsy can have an incredible intellectual ability too.

I maybe don't hold onto their inspiration enough.


I guess I'm glad I can write posts like this to keep me focused and remind me why I get up in the mornings, why I do what I do and why I want to keep riding or working in the area I do, in politics.
I have always believed, that while people might change political parties to one side of the spectrum or another, if you hold a same core set of values at the heart of a political party, then that's worth fighting for. After all, you can never change something from the outside in, you can only change things from the inside out.


As I go into the final year of being in my 20s, I thought I'd look back at the last 10 years or so and it's crazy to think that about a decade ago, my whole life changed after a seizure which caused me to leave the police force. It's taken a birthday to give me the dash of self reflection to write this post, but it's no bad thing, because a third of my life has gone by and it's been the most eventful decade I could have ever imagined.

Especially with epilepsy, you can never predict the future, but you can always look back at the past and use it, learn from it and reflect on it.


I think it's true that memories are hard to conjure and inspiration is hard to keep a hold of, but I also think it's worth treasuring them and trying to remember them in any way you can when you come across it.

1 in 2 and counting

Social media can come under a lot of criticism for things, I've seen it first hand in fact. But it can also do a lot of good as well. When I started this blog a couple of years ago, I just thought that the odd person would read it and that it would just become a bit of therapy for me to think out loud, so to speak. Blogger, however had other ideas.

There are 600,000 people in the UK with epilepsy, 1 in 103 have the condition diagnosed, so the number is actually likely to be a little bit more, taking into account misdiagnoses. Today when I looked at the stats page as I came in to write about a recent fit I had, it turned my attention to something else, something far more important than a rare seizure. There have been just over 300,000 visits to the blog since it started, one for every two people in the UK who have epilepsy. Given the numbers, there seemed to be a more important use of the blog today than chatting about my seizure... How about we talk about exactly what you should do if you saw someone have an epileptic seizure and exactly what you shouldn't do as well?

I had a very odd day exactly a week ago, where while treating someone else on the train I was on, who was having a fit, I was told I should stop them from shaking and hold them... down.

I guess it would seem like a normal human reaction to do it, but it's the worst possible thing you can do in the situation where someone is suffering one of the common seizures you can experience, a Tonic-Clonic seizure, this is why...

Imagine someone looks like they're in pain during something they can't control, but will likely come round from it quickly. Then imagine the absolute extreme speed their muscles can manage to tense and relax at, because the electronics in their brain are going crazy. If they're not close to anything that could hurt them, they're going to be unable to be stopped from tensing and relaxing, causing them to shake. So why should you NOT hold them down? Well it's simple, they'll be stronger than you and if they're on their back, you would be pushing their spine, head and shoulder blades into the ground where they'll be thumping against it in those areas. If they're on their chest, you would be pushing their pelvis, clavicle, chin and face into the ground where they'll be thumping it against those areas. They might appear to be shaking less, but actually you would be causing far more longer term damage to them as a result of your actions during their seizure.

What's actually happening to them? 

Well the seizure itself acts like an anaesthetic so they're oblivious to any pain during the seizure itself, it's the longer term pain that wouldn't specifically be caused by the seizure that the person would actually be able to feel.

So...

If the person having the fit doesn't hurt themselves during the seizure itself, the only long term effect from it will be a combination of tiredness and hunger. It's like going through a 2 or so minute peak sprint, full on without stopping.

But how do you stop the person from hurting themselves?

Well sometimes it's impossible - if they collapse onto a hard surface or hit themselves on the way down for example. But if you can get something soft under precious parts of the body like the head, then it could seriously affect how long it would take to fully recover from a seizure. 

Of course there's the obvious question of where would you take the person once the seizure has finished? It would be a bit much to expect a stranger to take someone home, rather than call an ambulance. But if you know them, then unless you suspect they have actually badly injured themselves or their fit has lasted longer than 5 minutes, then letting the person recover in their own bed is the absolute best place they could be. If there's someone at home with them even better. The prime need post seizure is sleep, so because many hospitals don't treat them as a priority, the sufferer could be left in the waiting room for hours before they're given a bed. 

So, here's a couple of real scenarios that have actually happened to me during my time since I left the Police because of a seizure 10 years ago...

I had a seizure in bed and woke up from it confused and a bit disorientated. It was in the evening and I had finished work. When I came round I was starving, a little unsteady on my feet and really fatigued. I went to get some toast and soup and ate a couple bits of chocolate too, then set my alarm and had an early night. The result was that I got up in the morning fresh as a daisy and went to work as normal.

When I was a fresher at university, I had a fit while I was out clubbing and from what my friends had told me, the student rep had held me down to try and stop me shaking when I was in the club. I came round properly in hospital in the waiting room after being guided from the ambulance there, because A&E was busy. I didn't see a doctor, but got my friend to get us both in a cab and go home an hour and a half later, because by that point I could barely keep my eyes open I was so shattered. In the morning I woke up and the back of my left shoulder and the shoulder blade itself was absolute agony and my right arm wasn't too clever either. I had to take day off because my headache was awful and I couldn't get to sleep that night because I couldn't lie on my back. It was just too painful. It took another 2 weeks before I could put my hockey goalkeeper padding on over my shoulders because the skin was raw at the top of my back.

I think it'll take a long time before even I don't feel like I need to apologise to someone having to witness me having a seizure. I've been told far too many times "it's scary!" So I always feel like it's my fault, that I've ruined something, or been a burden. I'm not. But it doesn't stop me from feeling like I should apologise for having a seizure. It's just down to a lack of knowledge.

If you've managed to finish reading this then I hope you've learned something new. But I just have one more request... Sorry!

Please share this with your friends on Facebook, Twitter, Linkedin, wherever. Because it's almost impossible by the law of averages that one of the people who have visited the blog, won't see a seizure tomorrow, or the day after or the day after that.

It's you who could be the difference between a few hours sleep and a week or more of rest and recovery for the person having the seizure that you would now know how to treat.


As a final thought, I want to pay tribute to a British MP, who is standing down this May and all the work she has done, including securing a debate on epilepsy in the House of Commons last week. But most of all, like her colleague Paul, for showing what people with epilepsy can do.

Thank you Laura Sandys MP.

Time

In sport, timing is everything, it's the one thing you want to effect, but have so little control over. The thing with epilepsy is that, in every case, you can't control it either. Anyone could have a seizure at any time in their life, just like anyone could get a virus a few days before a big cycling race.

Ultra cycling and epilepsy, seem to have a lot more in common than at first glance.
Both are a battle, but the longer the battle goes on for, the stronger we become. Both are in our heads, times when your brain has total control over our limbs, no matter how hard we try and prevent ourselves from moving faster, or slower, both build to a tipping point and leave your body absolutely drained.

But there's a major difference too. One is a choice and the other isn't.

The very fact that my epilepsy over a period of the last 10 years has been such a rare occurrence, means that the fact that during the time I'm riding my bike, there's only about a 1 in 100 chance I'd fit and that makes me incredibly lucky. It means I have some semblance of freedom and a vehicle for raising awareness. It also allows me to use my bike as a tool for seizure control. The simple pleasure riding brings, contributes to de-stressing and keeping me healthy, like the fact I'll have a deeper sleep that night, eat more than I normally would to replace the carbs burned. I could go on.

As you can probably understand, there's a reason I use up as much of my time riding as I can.

I'm lucky and very privileged I have the choice to ride, that I have the choice to put on a cycling helmet rather than a seizure one.

The odd thing is, it's doing sport that is when I'm at my safest. You might not think it, wearing lycra on a road bike. But  remember I'm also wearing a helmet. I've tested this theory just once on my bike and I barely had any injuries at all. I'm even safer when I'm playing hockey, where, as the goalkeeper, it's impossible for me to hurt myself I'm so padded up. But it took a long time before people started to recognise that epilepsy wasn't a life sentence and could enjoy things like the sport I do.
There was even a time in the United Kingdom, not that long ago, when to marry and be epileptic was illegal. The law only changed in 1970 in fact. It's astonishing to think that was the case, but it's part of the sad history of how people with epilepsy were treated. In fact, we live in a time where epilepsy is looked on as witchcraft in certain countries, like Tanzania.

I hope that there will be a time when everyone across the world knows the truth about epilepsy. That they know the person with the condition, can do anything any other normal person on the street could do, apart from the brief occasions when they do suffer a seizure.
But the key word there is brief. Only if a seizure lasts longer than 5 minutes should you phone an ambulance. After a couple of hours, unless they've injured themselves very badly, they will be the normal person you would know or expect them to be.

So next time you meet someone with epilepsy, please don't judge them. Give them the time of day you would anyone else. If you do then it will be a lot safer a place to live in for people with epilepsy, because they'll feel more comfortable about coming out as epileptic. I've found with friends that once I explained that I was effectively anaesthetised, it didn't make them nearly as anxious if they saw me fit. They also knew what do to, if I or anyone else had a seizure in front of them first aid wise. It normalised the seizure for them, because I explained that it was just a normal part of my life too.


I hope that during my lifetime epilepsy will be treated as normally as a common cold. That people will give opportunities to those with the condition that makes them feel comfortable enough to say they have it.

It's not happened yet, it's still seen as scary, odd etc, but with work, funding, awareness raising and education...

Maybe that time will come.

The Resting Place in 7

A few months ago now, I had made the decision that I didn't want to have my Olympic Torch sit in my own house doing nothing but serve my own vanity. So instead, I asked if it could live in Ward 7 of the Sick Children's Hospital, where I was treated as a young girl and where brain surgery changed my life.

Before Ward 7, I was having daily attacks of what I can only describe as the total opposite of the euphoria that I expect you would experience through drug highs. I don't actually know because I've never taken any, but I presume that would be how you would describe the opposite of non-specific, completely uncontrollable fear, coupled with unrecognisable de-ja-vu. To those that know, it's also Right Temporal Lobe Epilepsy.

Not only did the doctors change my life, but I was able to almost inadvertently, selfishly procure the most powerful inspiration I could ever have in my life. Witnessing the immense bravery and dignity that I have never seen anywhere else, before or since, except through patients I have come in to contact with in Ward 7. I don't like that I have taken so much from one incredible place and not been able to give a lot in return. The odd bit of press here and there for the Foundation, but nothing hugely significant in comparison to what I had taken from the place.

The fact that any strength to carry on during the toughest part of the Race Across America and the fact that I wouldn't even be able to take part in any bike race or even ride a bike, never mind take part in the world's toughest endurance event, without everyone in Ward 7, has left me with a very easy conclusion.
That the Olympic Torch of torchbearer 006 on the penultimate day of the relay, belongs in Ward 7 of the Royal Sick Children's Hospital.

The Sick Kids Foundation, has very kindly held the torch in trust, so that it could be placed in the ward. But when I heard what they had in mind to use it for, it was the most humbling message I had ever received in my life.
I was told by the CEO of the Foundation, that rather than the fish tank, they want to use it as the final milestone, for children re-learning to walk within the ward. I feel like the nurses and staff saying I'm an inspiration is very odd and I don't feel quite at home with the label. But I know the torch itself is incredibly inspiring as an object so, because I already have my inspiration in the memories I have from my time in the hospital and any time I have visited, I hope it can inspire the kids there now, after delivering it on Christmas Eve to the hospital.

The visit also reinforced my feeling of inspiration. A young girl the same kind of age as I was myself when I was in the ward, who was experiencing the most extreme amounts of pain, was so happy, upbeat and dignified, that quite frankly you wouldn't have known that she was in any pain at all. She joked about her brother, had a wonderful sense of humour and left me feeling even more clarified in my opinion, that the pain I am able to put myself in going up hills on a bicycle, in training or during a race, isn't a sacrifice at all. It's a privilege.


I hope the kids get to run around with the torch before it's put in it's box.

I guess it would make me incredibly happy to imagine it being used to do a mini relay around Ward 7 with the incredibly inspirational kids that visit there and are as brave and dignified as they are... making them feel like the torchbearers that their inspiration deserves.

...even if they did drop it once or twice!