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!

A Tough Year Only Makes You Stronger

The last month has been somewhat turbulent for someone who relies on stability for their health, but the last few weeks have given me some perspective and hope as to what is to come...

In November by my own standards I was really quite ill, but quite frankly the silver lining for me is that by having a seizure, I realise how lucky I am to have so few. They gave me a glimpse into the life I could have had, had it not been for the surgery which altered the direction that I would travel in the future. The brain surgery I had, now half my life ago.
Not since that surgery when I was 14, have I had two seizures in one week. But last month I did. I comprehensively chewed my lip, the side of my mouth and my tongue on those two separate occasions in a very short space of time, feeling weak as a result and my recovery not being helped by it being incredibly painful to eat food. Even a cup of tea was too painful to drink.

But then I have to think, what if it was like it was before and I felt like this at lease once a month? What if I wasn't as lucky as I had been half my life ago?

I got a glimpse into the bravery, that some people I've met along the journey I started when I was diagnosed age 9, have. I can only understand in part the courage some people have to live a life full of pain, fatigue and danger, of having a seizure at the wrong time or in the wrong place. For me, it puts into perspective any struggle I've had in this past year.
It might have been the year when after a 3 year absence, my seizures were like buses and 3 came along in the same year, but so what? I was ill for about 5 days out of 365, those other 360 I was well, able to work, able to ride my bike. Whatever disappointments I've had on the bike this year, tomorrow is another day and 2015 is another year.


So what of 2015? Well firstly I will start it in a different city than 2014. I've moved back home to Scotland and back to the city I was born in, the city of the 2014 Commonwealth Games, Glasgow.

Despite the last few weeks being difficult and turbulent, there's always a highlight at the end of the year that lifts my spirits. The BBC Sports Personality of the Year. In amongst the montages of the nominees, who show the most incredible skill, power, strength, speed, accuracy, commitment, there was a recurring question of: "What is Sport?" It means different things to different people, but it means more than I can describe, to me, as I've talked about many times before in the blog.

As for my own sport, I've had the heartache of leaving the club, who will always be my team, whenever I talk about London and Hockey. The London Edwardians. Starting the season as the first XI goalkeeper again, in the safest place I could be on earth, on a hockey pitch. I'm proud that I left England playing Surrey Premiership hockey and with my team at the top of the league. I just hope and pray, that after all the hard work the girls put in each week, that they, and the rest of the club can finish in top spot in their respective league.

Coming home I can't help but try to refocus on my cycling however. Maybe I'm not quite ready to join a new hockey club just yet, I still feel like a London Edwardian. So I have my target to get the funding for the Race Across America secured for the team. But there's also another ambition I want to fulfil next year too. The UMCA Larry Schwartz Award, as part of their Year Rounder Competition.
Over 100 miles in a single ride, without drafting, each month, for the entire year.
Of course I want to do it primarily, to raise funds for Epilepsy Action and feel it's significant enough a challenge that it would be worth a donation, but I hope it makes even a little statement about the condition too.

After that, I'll continue to get the club launched properly and hope that 2015, brings better fortunes financially, that will allow Epilepsy Forward Cycling, to start to compete on the national stage.


After all, we're the lucky ones...

I know I don't have to deal with the constant gruelling seizures every month of the year and because of that, I'll start each ride I do, knowing that the pain of the hills and wind in training, the feeling drained from a long ride, isn't a sacrifice...

It's a privilege.

A Question of Identity

I don't normally delve into politics with a large P on my blog too often, but I think it's hugely important to explain why a Glasgow born Brit, has benefited quite so much from the wonderful union of the United Kingdom.
I wondered what would happen to me if I was born into a Glasgow that was the largest city in an Independent Scotland? The scary conclusion I've come to, isn't something I would ever wish for my own children, if it had been the case.

I wondered if I would have been able to have the help of the British Epilepsy Association, Epilepsy Action? I wondered if I would have been able to move and make an impact in the cycling community in London with such ease, if I was a foreigner? What scares me most however, is the idea that the NHS wouldn't have been as strong in Scotland, as it was in a United Kingdom and thus the idea that the utterly life changing surgery I underwent, wouldn't have been able to happen at all?

No matter what the situation, I have never known fear like I used to experience numerous times a day, from my petit-mal auras I went through as a child. Before or since. I can't comprehend a world through my own eyes, where I hadn't lived the second part of it almost totally epilepsy free. But what's more, without the Olympics, there's no way I could have had the opportunity to gain publicity, for the cause of raising awareness of my condition.

What happened to me on the 26th of July 2012, has so far been the single most amazing thing to occur in my life because of how I view sport. I've talked about it before in the blog, but for some reason, it felt only right that I should bring my torch out with me to the 'Let's stay together' rally in Trafalgar Sq, London. Because without being British I believe I would be in a very different, incomprehensible situation. It scares me so much to think about what would have happened if I had not been in the care of the NHS, that I don't even feel I could say it out loud.

I don't believe that any young girl born after next week, who could develop epilepsy like I did when I was 4, should ever not be able to have the truly, utterly, life-changing neurosurgery, that I had. Because the situation where that wouldn't be the case, is unthinkable and having to go through a decade of the condition in the extreme states in put me in, was enough.


But there is another question of identity for me above and beyond epileptic, or a cyclist. If Scotland becomes independent, what nationality am I?

Despite being born, brought up and educated in Scotland, before serving the city of Glasgow as a Police Constable, I can't vote on Scotland's question of Independence. So it confuses me about how I'm viewed and it makes me upset because of this. I have a British Passport, but in London I'd be viewed as being Scottish, even more so if Scotland were independent. Knowing I can't vote in the referendum means I'm being made to feel as if I'm not Scottish enough though?
So who am I? Am I just epileptic? I don't want to be totally defined by my condition, but at the same time, it's the only identity I'm certain of in a world where Scotland and the UK are divorced. It's written on my ID band, so it must be who I am when I no longer feel Scottish enough to have a say, or British enough when I speak to people with my Scottish accent in London.

I'm proud to be born in Scotland, to be Glaswegian, but have the comfort to know, that also made me British too. This country has brought out the best in me, be it living in Glasgow, Edinburgh, Durham or London, I feel I'm a better person for being born into a United Kingdom.

There are a million reasons I could give to vote to stay part of the UK and say No Thanks to Scottish Independence. But I'm just an example of why I'm lucky to be born British. Not Scottish, not Northern Irish, not English, not Welsh, not Manx, not a Channel Islander, but British. So I'm trying everything I can to make sure if there's a young girl born in Scotland next week called Katie and if she were to develop epilepsy like I did, that she have the same amazing opportunities and help, support and treatment, I have had.

So that's why I went along to Trafalgar Square this evening with my torch clad in the Union Jack flag of my Team GB jacket, wearing my Scottish cycling jersey underneath, to join so many other Brits that feel the same way.


What's more, I had some help holding my torch from a young girl in a Scottish football top called Eve. She had an English accent and mother, yet a Scottish father. I was the girl in a GB top, with a Scottish accent and mother, yet an English father.

It was easier to hold the torch with her help...

...Some might even say we were 'Better Together'!

The Investment

I don't think I've ever spent £45 so wisely, but at the same time, paying a graphic designer to clean up the Epilepsy Forward Cycling logo, feels like a massive step. It's a wonder I didn't do it before, but it will mean that the O2 Creation kit that will belong to the club, will now be able to be made. I believe in this team, club and the project as a whole, more than I can say and at the moment, nothing is giving me more heart during my training rides, than seeing the club come together.

I genuinely think that epilepsy has a far better future than it does now and while I don't know how much of a part the club will have to play in that, I do know that people who are proud to wear purple, or the Epilepsy Action logo, will finally have a cycling team to call home.

For the last 6 years I've cycled with other teams, my university, my RAAM team, but I've never felt as at home riding as I did cycling for Epilepsy Action last year. In a huge way, I'll still be riding for Epilepsy Action, with the new Epilepsy Forward team - any profit from the club will go to the charity, with the jerseys able to be bought without people wanting to become a full member and the money generated going straight to the charity. But there's something about riding in full high quality kit, that makes you feel better about your abilities, feel better about your cause.

But there's another reason for the investment...
When the club launches at the end of July, we want to attract strong riders to it, so that the name Epilepsy Forward will be seen in British Cycling's results page. I want us to be able to build a club that can win races and be visible across the UK. It's an ambitious target, but I always think if you don't put your faith in something and go into it half hearted then it will never work. So I want to be able to have everyone ride in high quality kit, because I know that in cycling, little gains matter. If the little gains can make a difference then, it's my hope, that a strong brand which is so much about epilepsy as a condition, will make a positive impact.


Being one of Epilepsy Forward's riders however, also requires another type of investment, in time and sweat, making sure the hours spent out on the bike, will make for a good ride from me personally. It's fine to talk the talk, but riding 12 hours, like I will tomorrow, means commitment and hard cycling. The only way to prepare for my challenge I have set myself for this summer, including 200 mile 12HR rides and a 400 mile 24HR ride, is to put those kind of miles in every weekend. While so far while my training in on schedule, I'm not there yet.

At the end of the day, I just need to keep riding. While a bad workman blames his tools, I know I'll have the best tools possible.


I want to make sure that I'm deserving of wearing the purple kit and Epilepsy Action logo on my back.

Day 7: Just Ask

It's been hugely enjoyable to write the blog for the 7 days during epilepsy week. Maybe this time next year we could be further forward with researching a cure or tackling the stigma of epilepsy. The difficulty with epilepsy though, is it's hard to be able to help those with the most serious forms of epilepsy while at the same time tackling the stigma.

The paradox to epilepsy is that by emphasising it's seriousness and finding the funding for care and cure, you are making it more difficult to tackle the stigma. Likewise, by tackling the stigma, people may think the condition isn't serious enough to warrant raising funds for a cure for the most serious types of the condition. 

Where I feel I can best help is by showing that people with epilepsy can be as physically able as anyone else, because I fall into the category of individuals with controlled epilepsy. So as long as I'm disciplined in taking my medication, I should be seizure free the rest of my life in theory. But at the same time, there is far too many people dying because of their epilepsy and under no circumstances would I ever want to forget that. 

People should deserve to ask for help to stop epilepsy deaths, but at the same time, for those who it's relevant for, they should be able to ask for equal treatment to anyone who has a full bill of health too. Because to a large extent, for those individuals, only in name are they epileptic. 

I made a change recently to the shirts that Epilepsy Forward CC would wear. 

There are people across the world who stand in silence for so many causes, but I've never seen it happen in memory of those who have died from epilepsy. The chances are that far too many will have died this week, so we want to remember and tackle stigma at the same time.

The Epilepsy Forward Cycling shirts are a paradox too. They bear the purple of awareness and their purpose is to be as high end as possible to break world records, under the banner of an epilepsy focused sports team, that pushes any healthy individuals limits to the brink. But at the same time they'll have a black band round the right arm of the shirt in remembrance of all the tragic, mostly preventable deaths that have occurred due to the condition.

The variations within epilepsy are huge. They range from a large number of individuals who are Olympic standard athletes, musicians, lawyers, actors, writers, to the horrendous types of epilepsy that require round the clock care. The chances are that if someone is applying for a job, their epilepsy is well under control, but because many people don't know to ask, they don't realise that epilepsy can be totally controlled. They don't know to ask, how a person who may join their company is affected by their epilepsy. At the end of the day, it's not in the individual's interest to lie about how they are affected by their epilepsy, it could mean that they are put in danger. They also don't want to loose a job, because they have been dishonest about their condition, as it will make it incredibly difficult to find another one.

There is a real need to look at the person, not the condition and if in doubt...

Just ask.

As an end to the #blogaday for epilepsy week, I'll leave you with this thought:

I hope the posts have highlighted the struggle on more than one front, that the charities who work for a better life for people with epilepsy face. You probably know someone with epilepsy reasonably close to you. The stats show that 20% of you reading this will have a seizure at some point in your life. Tomorrow, about 87 people will be newly diagnosed with epilepsy in the UK alone, joining the 65 Million people worldwide with the condition.

If you're thinking about taking on a big sporting endeavour, but not sure who to raise funds for, then know this... 

Choosing an epilepsy charity to raise money for, will make a difference to more people than you could probably know. Texting FUTURE87 to 70500 in the UK, will donate £3 to Epilepsy Action and each country's epilepsy charities will likely do something similar to boost what they can do to help stigma, care and cure. 

At the end of the day, any help you can give, however small could make such a difference.