Friday, 27 January 2012

Can Epilepsy and RAAM work?

Lance Armstrong once said that: "endurance athletes are running away from something inside of themselves and that's one of the reasons they do what they do". Personally I've never had much time for Lance Armstrong, I've always been a fan of Andy Schleck myself.

I know he's wrong, because I'm not running away from anything. My goal has always been to ride full pelt towards the stigma of Epilepsy and smash right through it with a bicycle.

But what my metaphorical sledgehammer would be, is a small medal with the words: Race Across America Solo Official Finisher. I do wonder sometimes, if Epilepsy would make or break my RAAM attempt?

There are some big factors in my way.

Poor nutrition and sleep deprivation have been shown to lower the seizure threshold of people with Epilepsy. I have one rule with regards to my RAAM attempt when I hope to take on the Solo Category in 2014 - if I have so much as a Petit-mal seizure I pull out.

My medication, possibly the opposite of what Mr. Armstrong may have been taking in the TdF, is performance impairing rather than enhancing. Side effects of both of my 2 Anti-Epileptic Medications, Oxcarbazepine & Clobazam, include fatigue, dizziness, tiredness and drowsiness amongst others. Luckily I don't have any side effects that I can notice in any dramatic way from these two medications. Don't get me wrong I'm not exactly a morning person, but I'm pretty sure that's just me!

These are pretty big blows to an already horrific race, one described in the magazine Outside's poll as the world's toughest endurance event. In not only the hardest category, but also the hardest sub-category of Solo Female.

All in all it doesn't look great for me finishing.

But the thing about Epilepsy, is that not only do people with it seem to be good at adapting, but for some reason people with Epilepsy seem to be more driven, more determined to work against the stigma. I think if you can conquer Epilepsy, the Race Across America should be a cake walk - just a very painful one! I'll adapt by training harder, by having the best team in the race, making sure I get the very best nutrition possible to compensate for energy loss, have the best crew chief possible and try and get the best bike, or two, to help me.

I hope I have that determination of someone with Epilepsy to help me, but more importantly for every training mile I do and every mile of the race I ride, I will have the inspiration of people I've met and friends I have who have Epilepsy to pull me up every hill and stretch of road I encounter.

The inspiration? Well you can't buy or inject that into yourself, I'm just lucky to have it.

I've mentioned this before but I think it's relevant to mention it again.

People with Epilepsy shouldn't be defined as the people they are during their seizures, but the people they can be outside of them.

I have much longer periods outside of my seizures to define myself and that allows me to take on the Race Across America. But I'm still Epileptic, like a huge many others and time after time they have defined themselves in the most amazing ways. World beating athletes, the best musicians of their generation, artists still recognised today as masters, some of the greatest leaders of all time, some of the most successful people in business, some of the best academics that ever lived.

They all had Epilepsy.

If we as a community have any of their traits, we will all achieve how we want to be defined. 

Thursday, 26 January 2012

St. Valentine's Affliction: Love-struck or Epilepsy?

So what on earth does, engaged couples, happy marriages, love, fainting, the plague, bee keepers and a beheaded bishop have in common with Epilepsy?
Well, actually it's our patron saint, St. Valentines.

I have to admit that if someone asked me what St. Valentine's Affliction was before researching this post, I'd probably say it had something to do with over spending on Valentine's Day. Actually it's an ancient name for Epilepsy.

Since the bunting and decorations for New Year and Christmas have been taken down, I'm sure it hasn't escaped anyone's notice that, as if by magic, the shops are now filled with cards saying: "I love you", just about anything red, love hearts and roses a plenty. Yes, in a few weeks, that yearly ritual that makes everyone single in the world feel every more depressingly single and every loved up bloke in the world's wallet tremble, will begin again. I suppose you could say that in this case, the heart definitely rules the head when it comes to St. Valentine - most likely because brains weren't very easy to turn into a commercial bonanza.

The cruelly ironic thing is that, for many people with Epilepsy, telling their partner that they have the condition, isn't the easiest thing in the world and it's not always greeted with a positive response. I've experienced being dumped before, directly after I explained to a partner why I couldn't drive or why I left the Police, it's not pleasant. I don't think it's fair that anyone who has the condition should feel closeted because of it.
But I do think however, that if someone walks away because you have Epilepsy, it's better to have told them and to know if they are not worth any of your time. In the end these people aren't good enough and it's better to get on with finding the one person who is, than waste your time with the others who weren't.

I know I talked before about people who are having to deal with horrendous Epilepsy, far worse than mine and how much of an inspiration they are to me. Well, the people who help and care for them are really quite amazing too and an inspiration. This doesn't just include parent's, it can include a husband or wife, or a partner too - many people can develop Epilepsy later in life.

For those of you who aren't new to the blog, you may have noticed that my widget imbedding skills have got rather better and there is now a lovely new shiny donate button on the top right corner of the blog. I think as far a St. Valentine goes, spreading some love and donating to Epilepsy Action would be something he very much approves of.

As for finding love, well lets hope for all of us with Epilepsy, that our patron saint can pull a few strings upstairs with his pal cupid and we'll all get our happy ending!

- Maybe stay away from the bee keepers though - you might get stung going down that route.

Tuesday, 24 January 2012

"So what is it like to have Epilepsy?" / "I wonder what it's like not to have Epilepsy?"

I guess the unusual, although not unique thing about my experience of Epilepsy, is that I have had the experience of having Epilepsy since the age of 3, then had the experience of not having Epilepsy at all from the age of 14 after surgery, before the condition re-emerging when I was 19. During those periods I've had uncontrolled frequent Epilepsy, been fully healthy and now currently have Epilepsy controlled through medication. So I suppose you could say I've experienced the 2 extremes of the condition and am somewhere in the middle now.

The odd thing about when I had Epilepsy as a child, was that I frequently used to wonder what it would be like to be a 'Non-Epileptic' as then, for as long as I could remember I had 10 to 15 Petit-mal Temporal Lobe seizures a day and an average of 3 full blown seizures a week.
Sometimes I used to sit and think for long periods what not having Epilepsy would be like? What would it feel like to be normal, what would change, what would it feel like not to have the cloud hanging over my head that I would have another seizure very shortly?

It seems odd that I would think the polar opposite of what the more common question would be - "What is it like to have Epilepsy?" Well by answering the latter, it might help explain why I used to think about the first question so much as a child.

For me, the Petit-mal seizures I experienced as a child, are completely indescribable, it was such an alien feeling that I couldn't say properly, that they were like, well anything. It's a bit like how people have an emotional attachment and enjoyment of music. You can't explain what it is about the sequence of notes in a piece of music that make you enjoy it more than another song, you can only describe a broad feeling or say that you like a particular hook or melody for example. For myself and the many other people who still suffer from TLE Petit-mal seizures, there is the same problem. The closest I could get to describing them is a combination of indescribably powerful, uncontrollable, non-specific fear and a sense of deja-vu.

I hated them.

It's difficult to remember exactly what it felt like then, to overnight not have the cloud of my Epilepsy hanging over me, because apart from it being over a decade ago, I wasn't sure the surgery was going to be successful and so it was a very gradual change of experience. I suppose again it's impossible to describe, I guess it just felt normal, but one person's 'normal' is very different from somebody else's 'normal'. If I was to think really hard I would describe it as a very gradually increasing sense of feeling free from something. Metaphorically, I guess it was like being in a set of chains for 11 years and someone giving you the key - you can't really come to terms with it overnight if there is a threat someone might put them back on you.

The reason I wanted to talk about my experience as a child, other than to explain what a certain kind of seizure felt like, was to highlight how lucky I feel now.
There's a reason that despite some people saying I am an inspiration from time to time, with reference to my first Race Across America, I can't help but downplay it. It's because the true inspiration that spurred me on when I was at the bottom of a hill on my bike in America, was thinking of the people who still had the Epilepsy to deal with I so hated. In many cases I saw examples of much worse Epilepsy than even when I had uncontrolled seizures. How these people deal with their Epilepsy not only in their childhood but into the challenges of adulthood, I will never fully understand. To those people, based on my own experience as a child, I can only say this:

You are amazing and the real inspiration. Nothing I ever achieve will measure up to how you handle and conduct your daily life. But if I do achieve what I am hoping to achieve in the next 2 and a half years, know that you were the reason I did.

Monday, 23 January 2012

WARNING: Epilepsy Kills?

I was looking at an article from Newsweek recently and it read: "Epilepsy in America takes as many lives as Breast Cancer..... the risk of sudden death is 24 times greater in people with Epilepsy than the general population"
Even I was taken aback by those statistics.

But then when I looked into chat room and post conversations on websites like youtube, people were stating that Epilepsy can't kill anyone who suffers from it, for example one post read:
"It won't actually kill you, unlike what other commentors have said, if you're in a dangerous situation where you have a seizure, i.e. swimming where you can drown or you can hit your head on a table".

The thing that annoyed me most about this comment, was that apart from being false, if an individual threw someone into a swimming pool knowing they couldn't swim and that person drowned, would they get convicted of Murder or at least Manslaughter? Of course they would. For my money, someone who dies from Epilepsy in the same way still died because of Epilepsy. I believe you're preventing important awareness stating otherwise. Not only that, but just having a prolonged seizure itself can cause SUDEP, or Sudden Unexpected Death in Epilepsy, where no external factors caused the death.
The worrying thing was later in the post the individual explained they had Epilepsy. It got me thinking, if people with Epilepsy are unaware of the dangers of SUDEP, how is anyone else going to know about it and more importantly how to prevent it?

I wondered if it conflicted with the positive image of people with Epilepsy being able to live normal lives, work, go out with friends, be physically active, do what they wanted in life etc. The fact is unfortunately, it does - no company for example, would want sued because they had a cupboard in the wrong place, or because they didn't phone the Ambulance quick enough. So it scares people who don't fully understand Epilepsy, into feeling like they are taking a risk employing someone with the condition when they're not.

Regardless of the PR image of Epilepsy being tainted though, it is important to know that Epilepsy can and does kill some of those who suffer from the condition and it's not restricted to certain types of sufferers.
A study in Canada found that: "Epilepsy-related causes of death (which included SUDEP) account for 40% of mortality in persons with Epilepsy" If this is true, then worldwide 20 Million people in the Epilepsy community will die because they suffer from their condition. The thing that scares the hell out of me is that, if the stats are right, out of my 9 friends who have Epilepsy, I'll attend the funerals of 4 of them because of it, unless of course mine came first.

While it might not fit in with the positive image of the condition, it's important to remember 2 major things. Firstly, the person with Epilepsy is still the most talented person you might come across in the workplace, in sport, in the art and music world or wherever it might be, it doesn't stop us from being the individuals we are outside of our seizures. Second, for people with Epilepsy and those around them, be it during a seizure, medically or in daily life, many of these deaths could be prevented through better awareness and the actions they take.
This is why, despite the treatment I normally get after a seizure, dying to go to sleep in A&E when I can't, I'm still thankful to the person who phoned the Ambulance, just incase my seizure caused something worse. It's why I have showers instead of baths and don't swim, why I don't stand next to train platform edges and why I never, ever, leave to go and ride my bike without my helmet.

We can all do something to stop Epilepsy related deaths, even SUDEP is preventable if treated quickly enough.
You could be the passer by who phones the Ambulance immediately. You could be the person who stops a car if you saw someone having a seizure even vaguely close to a road. You could be the medical professional who makes sure the side effects of the medication taken to control the Epilepsy aren't unsafe, even if they do control the condition. You could even be the friend or family member who makes sure suicide never is an option if the side effects of Anti Epileptic Drugs result in severe depression, like the cases of some of those who take drugs such as Keppra.

It takes a certain amount of bravery to live a good and full life if you suffer from frequent seizures. Even I grapple with the question - Is it better to have died because of Epilepsy having had a great life or to have lived spending my life in a padded room?

I hope that because of some little adjustments I can live a great life, without my Epilepsy cutting it short.

Thursday, 19 January 2012

I hate being a burden.... but....

This is probably one of the toughest posts I'll write, but I feel I need to write it, so I guess it's better to rip the plaster off.

For me, the most frustrating thing about having Epilepsy was loosing my driving licence - twice.
If everything had gone to plan and the Neurosurgery I had when I was 14 had worked 100% rather than 99.9%, I'd be almost 7 years into my Police career in Glasgow, hopefully been promoted in that time, had a nice house that I owned myself, relying on other people for hardly anything.

Life has a funny way of taking you in a different direction though and it never really works out the way you plan it. Ironically life made me have to plan more than I would have done, because I rely on public transport to get around. It's one of the major benefits of being in a big city actually - the fact that there is plenty of public transport, but the TFL website is still on my favourites page when I open my Macbook, because apart from Facebook and Google it's probably the website I use the most. I don't particularly enjoy having to plan every journey I make with military precision unless it's one I take regularly.

It's not the planning which I hate most about not having a car and a driving licence though, it's feeling like a burden. When I can't go somewhere off the beaten track without help from others and having to ask for help, especially when you're 25.

The reason it's so difficult to write this post, is because I don't want to seem ungrateful, I feel the opposite. I'm not the responsibility of my amazing mates who help shorten my journey back from hockey training, or my colleagues at the Herne Hill Velodrome Trust, who drop me off at the train station because it's late on a Sunday night. They have commitments too - family, work, their own life for example! Nor I should say, is this post meant to highlight that they should help more. What they do for me is amazing and for that lift on their way home, they'll never know how grateful I am - they do enough.

I think it's good to understand though, that people in particular those who have Epilepsy far worse than mine, will I'm sure appreciate the help so much. But nobody wants to feel like a charity case or a burden. You don't want to become the person that there is a weekly rota for giving a lift to or whatever the help is. But on the odd occasion when the little bit of help comes, you're so grateful for it. Catch 22.

It's the same with the surgery not working, I don't like having Epilepsy, but at the same time I would never complain, because genuinely, I am so incredibly lucky it is not worse and I know of far too many people where they cope with Epilepsy that is a lot worse than mine. Sometimes I don't know how they cope? It's these people who inspire me to get on with life and just get on with carrying my massive Goalkeeper kit round to hockey training despite the odd grumble to myself.

There is a massive 'but' with regards to the problems Epilepsy and many other conditions throw up though - you adapt.

Take James Cracknell, he adapted his bike so he could carry his kids on it - amazing. I adapted by living where I do and I'm lucky enough to have the stress of travel expenses not be a burden because of the Freedom Pass scheme. Anyone with a chronic disability that prevents them from driving can apply.

I suppose at 25, I feel like I have lost a lot of my independence to my Epilepsy. There, I said it.
But I have a little ray of sunshine in my life that gives me part of it back. My bicycle.

The feeling I get of knowing I can jump on my bike anytime, without planning and go anywhere in London makes me feel amazing. I owe a huge debt to that thing. I haven't quite gone as far as naming it or anything, but it feels like a burst of freedom and independence. There's nothing more satisfying than cutting through peak time traffic quicker than I would in a car and for this Epileptic, it's like having wings.

I guess you grab a bit of freedom or independence where you can find it and it's not just a bicycle that can do that. It's different for different people. I guess you adapt in different ways depending on your circumstances. If you want an example of someone who adapted to her situation, see Chanda Gunn for details. She had to give up her childhood sports of swimming and surfing, where she probably would have been an international athlete, because of Epilepsy.

She won Olympic Bronze for the USA at the 2006 Winter Olympics and is one of the best Ice Hockey Goalkeepers in the world.

Now that's what I call adapting.

Wednesday, 18 January 2012

Hyde Park Corner traffic Vs a boss who doesn't know better

I was out riding today in central London. Admittedly, riding round Hyde Park Corner isn't a favourite part of riding my bike, but the bike is an awful lot cheaper than a London bus tour and I love riding round the landmarks of the city.
Trying to keep out of trouble in 4 lanes of traffic at Hyde Park Corner did make me think though. Not about if my cycling lycra should be bolstered with some body armour, but that having a hidden disability doesn't exactly make traffic kinder towards you when you're on a bike, nor would drivers be kinder if you were trying to cross a busy road. On one hand I would say why should they? We don't need wrapped in cotton wool. But having said that, it would be nice if there was a blanket kindness towards cyclists and pedestrians generally, but it goes two ways I guess and I've seen plenty cyclists and pedestrians that aren't exactly saints.

It made me think about it because a friend of mine, told me about someone she knew who's boss was getting irate at her friend for "drifting off" during work, which was actually petit-mal seizures. I wonder - would that same boss refrain from peeping at me, but not every other cyclist they came across for riding 5mph below the speed limit unlike their car? I think not.

The thing that bugged me most about the story was, I know so many people who have no health issues to worry about at all, that have their 'smoker's break' without their boss batting an eyelid. So to the boss I ask you this - if you were to count up the hours in a month taken up by employees who pop out for a cigarette and a chat Vs the hours in the month someone with Epilepsy had their petit-mals, would the person with Epilepsy come out as being less productive - I very much doubt it. Are they likely to work that much harder and be more determined to show that they are able to do their job?
Well, if the experience of people I know with Epilepsy is anything to go by - yes.

Take a young man called Dai Greene - you might have heard of him. The current 400m Hurdles World Champion, an international athlete, one of the UK's best gold medal hopes for London 2012 and he has Epilepsy. You can read just a small part of his story here:

I used to work in recruitment. Would his attitude make me want to employ him? You bet it would!

By the way, if this blog was a packet of cigarettes, it would say "Smoking Kills".

Tuesday, 17 January 2012

Me, myself and Epilepsy Action

To say charities like Epilepsy Action have an uphill battle would be an understatement. 4 or 5 people have a seizure on the London Underground in a day alone. But how many people would know what to do if they saw someone having a seizure?

The most publicity Epilepsy gets in one day is a warning about flashing lights before a news report or a film. The problem for charities like Epilepsy Action, is that this is the day to day experience of Epilepsy for people who don't know about, or have the condition.
I'm making a bit of an assumption here, but unless you were close to some who had Epilepsy or had it yourself, why would you raise money for a condition that has a stigma attached and maybe isn't very glamourous?
The issue is that it creates a downward spiral for awareness and research. You can't raise awareness as a charity without funds, but without awareness of the condition and the charity, where would the funds come from?

What adds to this uphill battle is that, there are so many different types of Epilepsy, how do you talk about one? I've had many people ask me if I can go to a club and not be affected by strobe lighting, or if I'm allowed to drink because of the condition. They wonder how I am able to cycle on my bike and if I will ever drive again? But it's okay to ask because you're unlikely to find 2 people with Epilepsy that have the same answer.

Sometimes, they even ask the best question you can ask - how does your Epilepsy affect you and what do we do if you have a seizure?

Computer screens don't trigger my Epilepsy, I love dance music and clubbing and although I am able to apply for my driving licence I haven't, because I have been 5 years seizure free after surgery and my Epilepsy came back. I couldn't live with myself if I was behind the wheel of a car and someone was in hospital because I had a seizure while driving, so I cycle instead.

I'm not the norm though. I don't know anyone with Epilepsy who is. For me if I were to have a seizure the best thing anyone could do for me is put something soft under my head and sit with me until I come round from the fit. Unlike the old wife's tale, don't hold my tongue if you want your fingers to remain in tact, don't please hold anyone down if they are shaking during a fit, you'll push their back into a hard surface and if there are any A&E staff out there, please, please don't make someone who has just come round from a seizure sit in those horrendously uncomfortable A&E waiting room chairs, when all they want to do is go to sleep!
My seizures don't hurt despite them looking dramatic, I'm not possessed by anything, I'm just in a state where electrical activity is massively heightened in a particular part of my brain and electrons fire in my muscles making them contract and relax at a high speed.

As for the underground, well unless I'm lucky, I'm usually standing because one of the many little changes I make to my life is not to stand next to the edge of a train platform - just incase.

With regards to the fund-raising if you're reading this in the UK and buy your shopping online, why not buy it here:

You would be helping to reverse the vicious cycle of a lack of finance for helping to raise Epilepsy awareness and if you decide to make that little change to your life -


Monday, 16 January 2012

This is where it starts I guess

Day One: Welcome to my blog.

It's difficult to put into words how much people like my friend Georgia inspire me. One of the most self aware and intelligent people I know and a Law degree to boot. I'm the furthest thing you'll get to an academic, there is no way I could replicate the inspiration Georgia gives me, particularly when I don't feel like I'm able to pass my exam I am due to sit soon. She makes me feel like it's achievable.

I guess in my own eyes I'm good at 2 things. The 2 things that I would describe myself as and both are to do with my passion for Sport.
On Tuesdays and Saturdays I'm a Hockey Goalkeeper. It's an amazing feeling, when everything else feels difficult and I can't control it, I put my Goalkeeper kit on and in a match it doesn't matter who the other team's keeper is, if she's old, young, rich, poor, if she has Epilepsy or not. We both have the same opportunity to make a difference to the match for our team by making saves and it's the best feeling in the world when I do.
The thing is though I'm 25 and I'm not exactly being signed up as the next Team GB Keeper.

I want to try and emulate the inspiration my friend Georgia gives me and the only way I know how is to ride my bike. To get on it and cycle and then keep cycling.
In 2008 I became the youngest British female to officially complete the 3000 mile Race Across America across all categories and I still am to my knowledge. The thing is, in terms of publicity I got from the race in 08 for Epilepsy awareness, it's a pin prick in comparison to what I could get to doing it again. Solo.

A month or so ago, security check allowing, I found out that I would be carrying the Olympic Torch the day before the 2012 opening ceremony in London. When I was asked to fill out some forms for it, it asked me to say what my dreams for the future were and not giving the form a second thought at the time, I stated that my dream included becoming the first British female to officially complete the RAAM Solo. I didn't think in a million years I would get an e-mail saying I would be a future flame, so almost did the application not really thinking about it. What I was deadly serious about though was the RAAM Solo, not because I wanted it to be me that achieved it and maybe someone will get there before me, but because I wanted someone with Epilepsy to have achieved the status of being the first British female, because then nobody could change that.

It kills me every time I see discrimination against people with the condition. I'm one of the lucky ones, because despite having to rely on medication, I haven't had a full blown seizure in almost 2 years. There are so many people who don't have that luxury and every day they inspire me. It's so difficult trying to find a job at the moment period, never mind having to explain to an employer what to do just incase you have a seizure.

My friends have said that they were scared watching me have a full blown fit, but I wonder what scares them? I wonder why some employers don't think someone with Epilepsy could have a desk job? I wonder why people get scared about telling their partner they have Epilepsy for the first time? But when I think about it, it's obvious. They don't know what Epilepsy is, they see flashing lights warnings and think that applies to everyone with Epilepsy or that the only type of seizure people with Epilepsy suffer from are fits like mine when I can fall down and shake. It may look dramatic, but it doesn't hurt and for me a few hours sleep gets me back to normal.

So this is why I am writing this blog, why I'm going to take part in RAAM again, why I did it in the first place and why if I pass the security check, I don't want anyone to focus on me as a person when I carry the Olympic Torch, but instead on an Epileptic, who could work in an office, cycle across America, play sport and live a great life, because people with Epilepsy can.

I would add one last thing, if you know someone with Epilepsy, why not just ask them about it?