Wednesday 29 February 2012

The 29th of February

Unless you've been asleep for the last day or so, or have a calendar that doesn't work, you will have noticed that today is a leap day.

For those of you born on the 29th that have been around 84 years or so, Happy 21st Birthday! For those ladies who have decided that waiting around for their bloke to pop the question would mean they were still unmarried and on their pension - congratulations if he said yes!

Of course being the 29th of February, also signifies something else too - it's a Summer Olympic year.
The rather amusing irony, which I noticed many people in the same situation as me commented on in the likes of Facebook groups, is that we have another day to wait until March begins - the month when we will be told if our conditional offer to carry the Olympic flame is confirmed. There seems to be a few nervous individuals itching to find out if they have passed the security check and hoping they get the e-mail tomorrow, so today is prolonging the agony for them.

Apart from a rare day of girl power, as of tomorrow it is the start of Epilepsy awareness month. For those of you who didn't know, the month culminates in Purple Day on the 26th of March, when people across the world wear purple to raise awareness and raise money for Epilepsy, or even just have fun with their wardrobe. The idea is derived from the colour of lavender, as it is often a flower which signifies isolation.

Speaking about women and Epilepsy awareness however, does take me back to yesterday, when I was at a presentation on the UK Epilepsy Pregnancy Register. It was startling how much this voluntary register had done in the last few years in terms of research in comparison to much older data collected years ago in very small quantities.
Many pregnancy registers are compulsory given certain circumstances unlike the Epilepsy one, yet women are still enthusiastic to take part.

The information these women are voluntarily providing and that the register is recording, is absolutely invaluable to better understanding Anti-Epileptic Drugs that pose a higher risk than normal, of malformations in a child. I should add caution to that statement, because these are still rare, but it does empower women to have more information available to them to ask the question of their GP or Epilepsy specialist.

To anyone thinking of having children in the future there is always information and support available if you ask for it. To any woman that is pregnant and on AEDs, please think about joining the register and I wish you a safe birth and healthy baby.

If you want any more information, you can go to the register's website:

Tuesday 28 February 2012

Vel Primus Vel cum Primis

I think that people are very much the product of their experiences and the environments they develop in. I also think it is important to feel that you are welcome and belong to a community or a particular environment, regardless of disability.

For many people, particularly those who have recently left university like me, their university environment is one of those places that helped mould them into who they are today and who they will be tomorrow.

The reason, for those of you who never studied Latin, the title of my post is "Vel Primus Vel cum Primis", is that it's my old college's motto at my university - Durham. I never thought when I applied to Hatfield College in 2007, that the motto would be so relevant to me now. It's direct translation is: "Either the first or with the first", although it was colloquialised in college to: "Be the best you can be".
I find it amusing looking back at my time in Hatfield that the motto would resonate so strongly in my objective in 2014, to become the first British female to complete the Race Across America, Solo. 
But it was also relevant, when asked very recently to be part of a celebration for Purple Day, the international Epilepsy awareness day. I was asked to climb Big Ben with a group of people representing the major UK Epilepsy charities alongside Laura Sandys MP and Paul Maynard MP. It was only very recently that after far to long a period, Laura, managed to get the ban on people with Epilepsy being allowed to climb the landmark, scrapped.
I will be exceptionally proud and humbled, to be "with the first" on that occasion.

What Hatfield College did for me, is provide a fantastic supportive environment for me to do things, such as become the youngest British female across all categories, to complete the Race Across America in 2008. To achieve as much as I could academically and support me when I had seizures, or when I had a rough time with my medication changes.
I'll never forget my first few weeks at Hatfield. 
Along with my then room-mate Anna, I started freshers week on crutches after a cycling accident. The staff were hugely supportive, but Anna and I found help and advice from another amazing student. Arabella, is a wheelchair user and so when Anna and I came to Hatfield, she explained little tips about roads to avoid because of the cobbles, hills, tips about getting our food in Hatfield Hall, everything! She was fantastic and Bella, is still to this day, one of the warmest, generous and most enthusiastic individuals I have ever met. Of course, she was a Hatfielder!

Even the colloquial translation of the motto, "Be the best you can be" is extremely relevant to me. 
Given I know I am exceptionally lucky to have my Epilepsy well controlled now, people who I know that don't have the same luck I have, motivate me to be the best I can be. 

I think it is no coincidence that, as I recently found out, one of the current students in Hatfield, Camilla, had also been told she has a conditional offer to carry the Olympic Torch. Hatfield was always a great college to be at if you wanted to be part of a team or society. For me it was a rather good place to be if you liked playing hockey, as we were really quite good at that! (Along of course, with Camilla's sport of rowing).
I'm sure, given Hatfield's alumni, it's environment and it's ethos, that there will be many more Hatfielders, old and new to carry the flame.
When you know you were eating, sleeping and living in the same place as the likes of Will Greenwood MBE and Andrew Strauss OBE, to name just a couple...

It's an inevitability.

I recently found out that the Deputy CEO of the British Epilepsy Association, or Epilepsy Action to you and me, studied at Durham too.

He went to Hatfield College - Go figure!

Thursday 23 February 2012

If you had to write a bucket list...

Nobody expects to die tomorrow, but if you did, would there be anything you wanted to do or change?

For me, I even have a bucket list of things to do before I'm 30! Thankfully my major one of getting a degree I managed to tick off. The second I hope to achieve in 2014, which is to finish the Race Across America Solo, after re-qualifying for the category in 2013. The third is a bit more obscure, to go to Ibiza before I'm 30 as I love dance music, so that would be something of a musical pilgrimage.
But in terms of things to do before I die, well I would love to travel more, see the northern lights, spend time in New York, have kids and do the whole marriage thing if anyone will have me!

I think if I died tomorrow, I wouldn't regret not doing these things, but I would regret if I hadn't done two other fairly major things though.

The first would be to get my new donor card sorted. I lost it last week annoyingly and I always wanted to make sure there wasn't someone who's life could have been saved, because I didn't organise myself properly for someone to know I wanted to donate my organs when I was gone.

The second was organising a will. I may not have much of a will worth giving just now or expect to pass away any time soon, but I always wanted to make sure that if I ever died, I had a Legacy will to help charities like Epilepsy Action or the Epilepsy Society. In the case of Epilepsy Action, it makes up 34% of the money they need to raise as a charity.
Not that we have regrets really when we die (although maybe we do, there will eventually be only one way to find out), but I would always want to know when I'm alive, that if the very worst thing happened, I would leave a legacy that was more than just some cycling medals or a story to tell at a funeral.

I think it's fantastic to leave something to help your family, but for charities like Epilepsy Action, it could be the difference between having an Epilepsy Nurse available to help patients with advice and support and not being able to afford one.

It's horrible to think about death for anyone, but a charity legacy could be a shining light for someone with Epilepsy - you could be saving a life too.

Wednesday 22 February 2012

The importance of not being alone

It's sometimes difficult to balance the idea of someone with Epilepsy who is capable, strong, employable, an inspiration etc, with the awareness that needs to be done around the impact that medication can have on individuals.
As if having to deal with Epilepsy itself isn't enough, a common, although by no means the most common side effect of Anti-Epileptic Medication, is depression. It doesn't fit well with the positive PR image of people with Epilepsy, but the thing about depression and behavioural changes as a result of medication is that there needs to be important awareness of it.

It's difficult for young people especially, to be self aware enough to know they have depression, a lot of the time this is the case for adults too. So it takes people around them to help and support them to making sure something can be done to address it. There is a very simple reason why this is so important.

Nobody should ever feel they should take their own life because they feel alone.

As a parent or a partner, even a son or daughter, a gradual change in behaviour may not just be a bad month, PMT, a change of job or school, it could be something as simple as the medication a person takes to make them better, resulting is side effects that make them feel even worse.

I once spoke to someone about their Epilepsy medication and they described how "they'd rather just have the Epilepsy, than be on their medication". Undoubtedly, if you are trying to affect the brain, the side effects of doing that could result in other issues.
But no-one should feel afraid to say, "I want to change my medication" to their doctor.

The other thing people should know is that they are not alone. I'm not ashamed to say I have Epilepsy, because when my seizures were uncontrolled or my doctor suggested new medication to me, there were places I could go within the Epilepsy community for advice, as a sounding board and for support.

I just hope that the wise heads I met through community groups, facebook or help forums and the advice they gave me, is something I can pass on.
You're never alone, there's 50 million of us in the world and with technology as it is these days, there will always be somewhere for you to go and share your experience, seek advice and ultimately feel like you're not the only person going through what you are.

Anyone can isolate themselves if they need calm, but it's knowing the support is there if you need it that is the comfort. Even for people who are caring for individuals with Epilepsy, there is somewhere for you to go too.

So we're not alone after all, we never were and we never will be.

So if in doubt - just ask.
(Even if you are just asking Google to tell you where you need to look!)

Tuesday 14 February 2012

Why I fell in love with Sport

This Valentine's Day, I would like to express my undying love... for sport!

For me, it was a match made in heaven. But the reason I love sport so much, is that it has the ability to be special for anyone. What sport does isn't quantifiable, but it can be quite profound. One of the sad issues that sport has faced in recent uncertain financial times, is that because you can't measure its impact, it is difficult to lobby for money to be spent on it, especially at the grass roots of sport.

I suppose the sceptics amongst you would say it's a world or corruption, of cheats and a male dominated arena of insane pay. You'd be right, FIFA isn't a glowing example of leadership, cycling, athletics and many other sports have uncovered athletes who cheat to get to the top and footballers get paid even more than bankers these days.

But sport itself, is in its purest form simple, empowering and brilliant.

It only takes a young girl or boy to watch a football match, a cycling race, an athletics championship or a swimming competition on television or in another way, to be inspired to try sport. The result of that inspiration could be them picking up a football, getting their bike out of the garage, buying new trainers or membership to their local swimming pool.
Over time that child could develop, from the simple enjoyment of just kicking a football against a wall, to setting themselves a challenge to be able to move the ball in a certain way, even to becoming part of a team and be part of a group who join together to achieve the same goal.

Despite the structures, politics and money that complicates the world of sport, there is a very simple pleasure in trying to master and new skill and mastering it, to aim to ride a distance and achieving it, to aim to complete a run in a certain time and hitting it.
It is these small, simple pleasures than even Lionel Messi, Sir Chris Hoy, Usain Bolt or Rebecca Adlington will have had as children.

But you don't need to be an elite athlete to enjoy sport. For me I take part in 2 sports which are very different but have given me enormous pleasure in their own ways.

As a hockey player, I don't just have the simple satisfaction of making a diving save, or the ball hitting my pads rather than it going in our goal, the club I play for is like a second family and an amazing community that I feel a very strong sense of belonging to.

As a cyclist, when I feel stressed, I can use my bicycle as meditation and feel free on it - it becomes part of me. When I ride everything feels more open, more accessible and gives me back a strong sense of independence. When I ride on a velodrome I feel an adrenaline rush like no other, coming off the steep banking and flying into a straight at an amazing speed, it's incredible.
With the Race Across America it gives me a feeling that I can make a tiny dent, to play my part in helping get rid of the stigma of Epilepsy and raise funds for the condition the only way I know how.

It doesn't matter what the sport is, where it is, or how someone does it, anyone has the opportunity to take part in it, find peers that they can relate to, feel healthier, become part of a kind of family or give themselves solitude amongst a hectic life.

So that's why I fell in love with sport and why anyone else can too.
The sporting community is for everyone, it doesn't matter what country you come from, what religion you believe in, if you're a girl or boy, if you have a disability or none at all.

I believe if you can get someone to a sport's field of play, whatever it is, amongst their peers, it doesn't matter who you are, you're involved and can do anything you put your mind to there.

What a special place that is.

Monday 13 February 2012

Stepping up to the plate

It's a cheesy line from a Hollywood blockbuster movie delivered by Alec Baldwin, but it's true. "There's nothing stronger than a heart of a volunteer."

Just this week I completed the build up and training as a volunteer, to what will be an amazing event - the Track Cycling World Cup, held in the London 2012 Olympic Velodrome. The thing that has astounded me however, is that so many people stepped forward to be part of the biggest volunteer project in peace time history in the UK - I am just one of the many. I'm incredibly proud to stand alongside so many people who gave up their time, because they wanted to be part of something. The Olympic and Paralympic Games.

But like my roles as a Trustee of charities Interactive and The Herne Hill Velodrome trust, in this role as a London 2012 Gamesmaker, I feel incredibly privileged. I say that because I am a fairly young head amongst many exceptionally experienced, intelligent and knowledgeable individuals. I have the chance to learn and become more knowledgeable as a result of working with them.

But there are volunteers across sport, charity and many other strands of community. What they do, may not make the front page of a paper, but they are the glue that holds organisations and communities together. They fight for causes, sometimes this comes in the form of a campaign, sometimes this will come in the form of a physical challenge, but these people step up to the plate and keep fighting.

Another privilege I will have soon, is to work with Epilepsy Action at the Virgin London Marathon in April. I can honestly say I bow in the presence of anyone who completes the marathon, I have never really been a very good runner. Far better with wheels attached, I was always of the mind that, "why would you run somewhere, when you can cycle it so much faster?" What these people put their bodies through is phenomenal and I just hope I am able to give them some physical comfort and an exceptionally well deserved massage at the end of the race.

For me unlike the marathon runners, I will have to rely on some amazing people who will make up my crew, in order to even have a chance of completing Race Across America in 2013 & 14.

It takes a special kind of person to make a good crew member, hard working, enthusiastic, knowledgeable, talented, motivational, organised, energetic, the list goes on. Sometimes people forget with all the focus on the RAAM riders, how crucial and outstanding these people are. They get put under the most extreme stress, have to make incredibly difficult decisions and put their heart and sole into a race which they won't even get a medal or a plaque for. Instead they leave with memories, some good, some bad, some extraordinary.

I know from experience that crew chiefs bear the brunt of this stress, they are the person who calms the conflict, keeps the ship on course and if something goes wrong, the responsibility is theirs alone. Whether these amazing individuals feel they did a good, bad, indifferent or amazing job, it doesn't matter.

They stepped up to the plate and took on the role.

And to a certain lady, you know who you are - Thankyou.

Wednesday 8 February 2012

You don't have to look hard for Inspiration

In my last post I talked about Dickens, Lear, Ceasar and other historical figures who have provided inspiration at different points in history. I've also talked previously about how my Race Across America attempts might work with my Epilepsy.
Obviously Dickens, Lear, Ceasar and Co, never cycled the RAAM Solo, so how on earth can I relate their inspiration directly to how I would tackle my own challenge?

The solution? Go straight to the very top of the Race Across America tree!

George Thomas has broken Ultra Cycling records a plenty, completed RAAM Solo numerous times and is so well considered within the Ultra-cycling community that he became the Race Director of several Ultra Cycling races, including his current post as the Race Director of the grandaddy of endurance cycling, The Race Across America.

George suffers from Epilepsy. As real life inspiration goes, he's pretty darn good in my case!
- And by that I mean, he's about as good an example of me feeling I can achieve my goal of the RAAM Solo as I could possibly get.

The reason I mention George is that as a cyclist, in particular an Ultra-marathon cyclist with Epilepsy, he is an amazing man to look up to. I actually have 2 major cycling influences that have the condition, the other being Marion Clignet, who despite being shunned by the USA cycling team for having Epilepsy, became a 6 times World Champion Track Cyclist. Not bad aye?

As far as cycling goes I have some very rich pickings when it come to idols who have Epilepsy like me. But it wouldn't surprise me one bit if you played a different sport and found a World Champion, Olympic medalist, or in another area of life outside sport found your own idols, not just from history, but that are current, amazing individuals that you can draw from.

It just goes to show, that inspiration isn't far away if you need it. But even for me my friends that have Epilepsy constantly provide me with new inspiration every time I speak to them. Be it a famous idol or close friend, we're not alone, we're not the only people going through the issues Epilepsy throws up.
So if you've ever thinking "I feel alone" or feel like you don't have anyone to talk to that can relate to what you are going through, just look around.

We're never far away and probably a lot closer than you might think.

Tuesday 7 February 2012

Happy Birthday Charles Dickens

Today marks the 200th birthday of prolific author Charles Dickens, who produced work which included novels such as Oliver Twist, A Christmas Carol, Our Mutual Friend, Great Expectations and Bleak House, to name just a few.

Dickens' history with regard to Epilepsy is not fully known, but due to numbers of characters he wrote about that had the condition, along with the stunning accuracy of his descriptions of the condition, it is thought the only explanation for that accuracy is that Dickens himself suffered from Epilepsy.
If he did however, he didn't do the condition much service at the time of him producing his work - most of his characters with Epilepsy were villains!

Dickens however, like many others does act as an example of people, who despite their Epilepsy, went on to accomplish amazing things during their lifetime. He is also not the only example, even in the literature world, of truly inspiring individuals with the condition. If you were to pick ten of the best authors to have ever lived, it is likely that more than just one of these individuals in your list had Epilepsy. If your list included Leo Tolstoy, Edgar Allan Poe, Edward Lear, Agatha Christie, Lewis Caroll or Graham Greene, then snap.

These are just some of the people who had been diagnosed retrospectively or during their life with the condition and people who I greatly admire. For most if not all of these individuals, they kept their Epilepsy very quiet or hidden because of the repercussions of them being known to have the condition. For Edward Lear, he hid before he had a seizure, most likely because he experienced a Petit-mal Aura, before he had a Grand-mal seizure. But despite this, Dickens, Lear and their contemporaries, some of whom are mentioned here, managed to produce some of the most cherished pieces of writing in history.

It goes to show that despite my own sanctuary from my condition being sport, it is not unprecedented that literature could be the sanctuary of another person with Epilepsy. You could sit at your desk and end up writing the next literary masterpiece.
It's almost awe inspiring to think that even for someone with Epilepsy who has thoughts of working as a politician, you could be following in the footsteps of fellow Epileptic, Julius Caesar.

In an odd way, Epilepsy has actually been thought to cause an almost autistic type effect on sufferers. Not where there is necessarily major issues with communication, but where despite the brian being damaged in one area, another area becomes incredibly prominent and powerful. Which is why many people believe Epilepsy is so prevalent in the list of the most creative and impressive minds in history.

These hugely brave and inspirational figures in history should give anyone with the Epilepsy hope. In a time where Epilepsy was even more grossly stigmatised and misunderstood than now, they pushed forward and became some of the most well known and impressive figures in their respective trades.

- Some of the most impressive and well known ever in human history.

Monday 6 February 2012

Today is a good day!

An odd title given I'm in quite a lot of pain today due to very painful new wisdom teeth, but today is definitely a good day.

I say that because sometimes it's little things that make you appreciate what you have. This morning I stopped and realised something. Something that I don't think I've actually ever thought about before. When I went to look for painkillers, trying to decide which one would be the most effective, I just took my medication as normal. I realised I wasn't worrying about my Epilepsy medication, worrying about if it was working, worrying about if I was noticing any side effects, nothing, I just took them and was done.

It was rather nice for my daily routine with regard to my Epilepsy to be so completely, totally, boring.

Although I did have a wonderful weekend that was the complete opposite of boring and I suppose it's nice just to look back and enjoy it when everything gets back to the routine of a new week - quite the opposite of a certain song performed by Bob Geldof and Co - "I don't like Mondays"!

On Saturday I was playing hockey as normal, although it wasn't quite a normal game with cake a plenty, balloons and a 3-0 win, we definitely deserved, but maybe didn't expect to be quite as brilliant as it was. Well, it was our captain Frosty's birthday, so we had to get a great result for her I guess, although anyone who knows her will know, this mental case of a last ditch, superman-esque, spectacular diving, slide tackling defender, definitely played her part! So it was rather good timing that in the evening our club had it's slightly belated New Years party which conveniently doubled as a birthday party.

On Sunday, despite nearly breaking well... something in the snow trying to get to Wembley Arena, I had my London 2012 Gamesmaker Orientation, met Iddie Izzard, who was lovely and just as nice in the flesh as he comes across on TV and also met the amazing people who would be my fellow volunteers for the Olympic and Paralympic Games this summer. After the high of the day before and despite some rather wooden, over-engineered messages of inspiration, I really did appreciate how amazing sport can be and how truly awesome it will be to have the Games in the UK, for probably the only time in my lifetime.

What put the icing on the cake (previously attempted to be eaten on the Saturday as the chef had slightly over cooked it), was on Friday evening, when I learned I would be a Trustee board member of the amazing London disabled sport charity, Interactive.

It's difficult to express how much the opportunity means to me, to be able to work within a fantastic structure of brilliant individuals and help make a difference. It's hard doing it alone, but when you have the support of a team of people who all have the same vision and drive, you really can make an impact.

What inspires me most about the charity, is that it doesn't just look at the issues faced by people who want to play sport that are wheelchair users for example, but equality for people with disability across the board, disabilities that may be hidden.
In many ways as a disabled person who is by definition able-bodied, you feel an affinity to both abled and disabled sport, it's a kind of limbo in the middle, so it's difficult to feel completely part of one community or the other. Charities like Interactive work to address that feeling of limbo and help facilitate a community where everyone is equal - a sports field.

There are serious challenges faced by people who are wheelchair users such as the obvious access issues which are common. But people with mental health disabilities, or neurological conditions like Epilepsy have their own unique challenges too, that aren't always obvious at first look. The fact that Interactive covers all these areas takes guts - to work to tackle the challenges that all these different disabilities present isn't easy.

But it's worth it.

When you see the results and people gaining the rewards from sport and physical activity, it inspires you to want to do more. I just hope that my newly acquired 'wisdom' helps me to work successfully as part of this outstanding team of people.

So actually today is really a rather good day indeed. I have absolutely no idea what on earth the Boomtown Rats were ever on about.

Thursday 2 February 2012

It shouldn't take a serious accident for cyclists to know what's safe

The fact that anyone with Epilepsy may use a bicycle to get around probably won't and shouldn't change, but even as a veteran cyclist (or so I like to think!), I've recently learned that even I should change my habits to do with the way I cycle, particularly around a busy city like London. I hope anyone, with or without Epilepsy, thinks about their habits too, especially after what I'm about to tell you.

It's always shocking to see someone so able and athletic, unable to take part in physical activity. This was most definitely the case with my friend and fellow London Wayfarers Hockey Club player, Xanthe. As a Goalkeeper who played with her in defence, I was always pretty comfortable in the knowledge if Xanthe had the ball in our 3rd of the pitch, it wouldn't be there for long! It was a huge shock then, to see her in a large brace she had for her back, after a multiple spinal fracture and back injury because of a car driving into the back of her bike.

I know from experience after my Neurosurgery, how serious anything to do with the brain or spine is if it's injured. So I was shocked when I spoke to Xanthe about her accident and what she was told as a result. In essence, she was told if she had been riding on cleats, she wouldn't be here.

What she told me not only made myself and I'm sure all her friends incredibly thankful she wasn't wearing cleat pedals, but also made me seriously think about how I ride myself. Up until Xanthe had told me what she did, I had ridden on cleat pedals because I thought it was safer if I was able to ride quickly and not agitate drivers into over-taking me dangerously.

Looking back on it, I actually had one incredibly close shave myself, with a bendy-bus no less. I got trapped between the bus and a curb on Oxford Street, which was too high for me to clip out my pedal and put my foot down on. Looking back on it I have no idea how I had the presence of mind to do what I did, but I was incredibly lucky that I did it. What ended up happening, was with the bus giving me no room to cycle, I saw the rubber bend in the middle, grabbed onto it and pulled myself into the bus, which in turn pulled me along the road until I had space to take my foot out my pedal. If I hadn't done that I may have ended up underneath the bus.

The reason I wanted to explain these stories is that I never thought I was reckless as a cyclist, I always thought the opposite, I always wear a helmet, high visibility clothing, have lights on my bike, etc. After the incident with the bus I didn't stop wearing my cleats when I should have done, I just avoided roads with high pavements or if I saw one coming, would ride in the middle of the road so a bus couldn't do what it did before.

It should never have taken one of my friends being seriously injured for me to change my cleat pedal habit.

But I didn't know any better, which is why if you are reading this and ride on cleats, please think seriously about the potential consequences. If you are reading this and have Epilepsy while riding on cleats, SERIOUSLY think about the potential consequences. For me speaking to friends and researching this blog has completely changed my view on what constitutes safe cycling. There are obvious things that I hope everyone knows about, helmets, lights, clothing etc, but riding with trainers instead of cleat shoes, wearing a medical emergency band, could be the difference between life and death. Even people without Epilepsy, who have an allergy to a certain medicine should really wear a medical band if it's possible you could be knocked off your bike - it could be that vital bit of information the emergency services need to keep you alive.

As for my friend Xanthe, well this amazing woman is not only back at work only a couple of months after a major accident, but she is also planning to cycle London2Paris in the near future and is still recovering from her horrific accident.
If that doesn't inspire you to do your own cycle for charity - NOTHING WILL!

Wednesday 1 February 2012

Different translation, global condition: Epilepsy, てんかん, эпилепсия, die Epilepsie, मिर्गी, Epilepsia.

After a couple of weeks of writing the blog, I managed to find the settings on my account that showed me geographically where people were reading it. Firstly I think it's amazing anyone is reading at all, so thank-you. Secondly I was awe struck looking at the readership map how far reaching it was. What social media does is astounding and it's incredible to see a map highlighted in places like America, Canada, Columbia, Brazil, Japan, India, Germany, Russia, Hong Kong and many more as well as just the UK where I live.

The thing about Epilepsy is it may be called many things, but people with Epilepsy face the same problems in every country that makes up the 50 Million people with the condition across the world.

It doesn't matter where we live, what kind of Epilepsy we have, what age we are, or even where we are at the time, one thing that unites us all is the hope that when we do have a seizure, someone will help and look after us.

But very few people know exactly what to do in the scenario of an individual having a seizure and it is very poorly covered in first aid training, despite being one of the most common conditions you would likely encounter in public.

Here is some basic guidance about seizures and the first aid treatment you can help with.

- There are many different types of seizures which can range in their appearance from staring into space and looking dazed, seizures where the person goes stiff and collapses then shakes, or one of the two in isolation, someone wandering around without knowing where they are going, pulling at clothes, speaking incoherently, or limbs becoming stiff.

These are all common symptoms of someone having an Epileptic Seizure, but broadly speaking the advice for how you should treat a seizure is the same.

What to DO:

- If a person is any danger, try and move any potentially dangerous objects around them, or guide them away from dangerous situations if they are walking about.
- Put something soft under their head, particularly if they are shaking.
- Speak in calm and reassuring tones to the person.
- Time the seizure. It can be incredibly difficult to judge if you are trying to help at the same time, so use a watch if you can.
- Stay with the person, or find someone who can until they have recovered from the seizure, it's possible they may be forgetful or confused when they come round from the seizure.
- Put the person in the recovery position once the seizure has finished to aid breathing.

- If the seizure has lasted longer than 5 minutes, if they have injured themselves, if you know it is their first seizure, if one seizure has followed another without the person regaining consciousness between them or you believe the person needs urgent medical attention: Phone 999 for an ambulance.

What NOT to do:

- Don't put anything near the person's mouth.
- Don't shout at the person or make abrupt movements that could frighten them.
- Don't restrain the person.
- Don't try and bring the person round from the seizure.
- Don't move the person unless it is absolutely necessary.
- Don't give the person anything to eat or drink until they have fully recovered.

Something you can do now: read the first aid info and send the post to your friends or colleagues, family etc. It is highly likely that at least one, probably more, of the readers of this blog today will know someone who has come across a seizure today, this week, this month in public.

It's also not only likely, but is the case that knowing what to do, could not only prevent serious injury, but could even save someone's life.