Friday 30 May 2014

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.

Saturday 24 May 2014

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.

Friday 23 May 2014

Day 6: Epilepsy's Mercy

It can be difficult to describe a seizure, sometimes impossible to describe it up to a certain point... How do you describe a kind of fear you can't understand yourself in your own head? How would you describe de-ja-vu that doesn't make any sense and that even seconds after you've experienced it disappears from your memory anyway?
This is a glimpse into the epilepsy I know. I hated it and now that it's under control if feels like being released from prison. It might not be as safe for everyday life, but there's a huge relief from not experiencing the small conscious seizures, called petit mals.

It's hard to try and get across that violent seizures aren't sore, they're not painful and not scary for the person actually having them. But I have a theory and a hope that in explaining what I am in this post, could maybe help the stigma to those that read it.

I can't stop the fact that epileptic seizures that are clonic-tonic grand mal seizures look odd, potentially scary, but I can explain that they're just a part of everyday life. It's incredibly difficult to put your finger on exactly what about epilepsy causes it's stigma, but I believe that feeling like you're watching a person in pain has something to do with it.

If a had a seizure tomorrow, while it would be unfortunate, it wouldn't affect my life adversely. Furthermore, if like previously, they weren't controlled, it would just be another normal part of my life. You see, the one mercy that epilepsy allows its' sufferers is that, you can't feel anything during generalised seizures. It doesn't hurt to have one and post having them, the tiredness that they cause it almost anaesthetic like. The initial pain has gone most of the time, after regaining full consciousness and awareness.

If I had them in bed, they would never effect my life except for maybe a few hours off work if it was money to friday, to sleep off the tiredness. It wouldn't effect my physical capability outside of those boundaries and quite frankly, if I could find an employer that would be accommodating, if like many people with the condition, I had seizures occasionally, then, say I worked later to make up the hours, I'd be as physically and mentally able as any other employee, who had a 100% bill of health.

You see as someone with epilepsy, it's hard to find the route of how to tackle the stigma, but in a way, I hope the knowledge that actually, nobody is in pain themselves during a violent seizure, might go a little way to de-mistefying the condition and the black cloud that surrounds it.

Thursday 22 May 2014

Day 5: Remembering who you really are

I find it amazing how the simplest things give me inspiration for writing these blogs. Tonight it was my flatmate and I, just talking about starting to listen to music again after we felt rubbish for a particular reason.
I remember when I hit rock bottom, during the time I suffered from severe depression due to taking an old medication. It made me feel so bad, I couldn't even find music to fit my mood ...Past even feeling up to riding my bike, I didn't even have the energy to feel sorry for myself for not feeling up to riding it, or even the soundtrack to go along with my misery.

I don't remember a lot about the few weeks before starting having nausea as well, but after that I just took myself off the medication, but only because it didn't control my epilepsy either. I wouldn't recommend it without advice from your doctor.
I remember the day after the day I stopped the medication though...

I walked into class, it was Media in Sport or something. The sun was shining and I pulled my ipod out of my pocket. I went to an old song, that has almost always been my 'happy' song since I was at school, Space Cowboy - 'I Would Die 4 U'.
The people I walked past in the street must have thought I was a nutter. I was smiling away to myself for no reason whatsoever. I was just happy again.

It's hard to explain what's it's like when you come out the other side from dealing with depression, it's like waking up for the first time all over again. Some people have described it to me as shedding a skin, like you're fresh again and I can see what they mean. Others have described it as being like a caterpillar that's been in hibernation and has turned into a butterfly. I especially liked that description, it seemed a nice one, because the thing that came out of the situation with taking my Keppra medication, was that I learned about myself. So in a way I felt like I grew up a little more.

I don't know if it's the way my brain is wired... well I suppose it must be really, but I love music and it really changes my mood a lot of the time.
Getting rid of the Keppra and moving to a different medication gave me a new lease of life and while I don't seem to have strong memories of a lot of amazing things that have happened to me during my life, I do have a very strong one of riding my bike for the first time again after coming off my Keppra, ipod in my ears, listening to 'Halo' by Texas, flying down the hill to my lecture on my bike and feeling like I could take on the world.

I think sometimes we all need something to remember who we really are. It might be something special someone says to you, be it in person or through music, something making sense for you finally, a change of medication even...
For me it was my bike and Sharleen Spiteri singing, "she's so pretty, her hair is a mess...", which is something my mum would say to me! I got a strong powerful sense of happiness from it.

It reminded me of who I really was and I didn't recognise the person who was depressed. I got my mental strength back and without it...

...I don't think I could have got a degree.

Wednesday 21 May 2014

Day 4: Show me the meaning of being lonely

When Cassidy Megan started Purple Day a number of years ago now, it wasn't a random colour chosen to signify the condition because nobody else had taken it, there was a message behind it.

Lavender grows in isolation normally and depressingly, many young people with epilepsy have to grow up in isolation too. Not because they don't have friends, but because it's almost impossible for people without epilepsy, to come close to understanding what the condition is like to experience.

It's hard to explain that you've got a short attention span, because your brain is so constantly disrupted all the time, or because your epilepsy affects a part of your brain that it uses for learning skills. It's almost impossible to explain certain types of epilepsy, like my own temporal lobe epilepsy, where the sense of non specific fear is so strong and potent, that you just can compare it to anything, even though you're awake, conscious and can still, with limited capability, talk as normal.

While the statistics show that it's not the case the other way around, there are also a large number of people with learning disabilities, that also have epilepsy. I can't even imagine how they must feel, not being able to communicate in the way they would like, amongst their peers, never mind having the epilepsy to deal with on top of that.

Sometimes you just have to concede that you're alone in your own head with your thoughts and you can't explain them.
Or do you?

In the 21st century, social media has developed as a such a fast rate, it's hard to keep up. And it has major benefits for finding people who also have epilepsy and being able to talk to them. Facebook is a brilliant example, where epilepsy support groups are open and full of conversation about experiences of epilepsy, the medication side effects and generally just confirmation for people, that actually, what they are going through is totally normal and is also happening to other people with epilepsy too.

Young Epilepsy, have for years now run a brilliant school for kids with severe epilepsy, meaning that they can be amongst their peers and get the best support possible, that doesn't patronise, but just helps in their educational and social development.

Epilepsy Action, who are the biggest member led epilepsy organisation in the country, have branches across large parts of the UK, but also run a number of events and even tea and coffee groups. I guess when peer pressure demands that you drink alcohol after a certain age, it's great knowing no one will judge you for having a cuppa instead of a beer.

Epilepsy Society, run the specialist epilepsy hospital in Chalfont St Peter, where it's impossible not to find people going through exactly the same experience as you I think. It's also where I met two of my best friends, Georgia and Susie while I was being re-tested to get my specific epilepsy diagnosis.

I guess your friends are going to be people you can relate to most and that are your peers. I should expect that finding people who are going to know exactly what you're going through yourself, makes for a lot of less isolated life.

Tuesday 20 May 2014

Day 3: How to Diagnose a Seizure

The thing with experimenting with medications for certain types of epilepsy, is it can take years to find a medication that works, if you have long gaps between seizures. But even frequent epilepsy can be difficult to get an exact diagnosis for too.

There's a number of strategies to use when helping your Neurologist figure out the best treatment for your epilepsy, but even just finding out what kind of epilepsy you have, can make a huge difference to helping you feel less isolated within your own community. I remember speaking to a young woman, Rachel, at Chalfont St Peter, the specialist epilepsy centre and I talked to her about our Temporal Lobe Epilepsy Petit-mal seizures.
It was as if a light had just gone on in our heads and it was so liberating to find someone who understood something, which can often feel impossible to explain.

What people don't really understand, is there is a host of different kinds of epilepsy people could have. It's like the different kinds of cancer there are, except it's specific to the brain, so what you actually do during a seizure, could do so much to help your Neurologist understand if your epilepsy is starting in the left or right side of your brain, if it's impacted by lights, if it is centred round the area where you process emotions... there are so many things your doctor can take from seeing one of your seizures. It's why I always ask my friends, (if they can get over the fear of dealing with a seizure) to try and film it on their phone.

I understand that's not always possible, so the next best thing I can do, is ask them to describe it for me, but in particular, for myself, to keep a track of exactly when I've taken (or on rare occasions) missed my medication. What time of day I had my seizure, what day of the month, did I have exam stress, for girls, was it just before starting their period, did I miss any meals? All of this info can hugely help work out why you're having seizures and keeping a track of it can greatly help your doctor find the best medication for you.

The other thing I found was not to be afraid to be assertive about recognising symptoms, from places you can trust information you're getting about your epilepsy. If you're recognising symptoms, make sure you tell your doctor about it - it can all speed up the process of getting to the right medication quicker.

The biggest thing for me though, is actually going through full testing, like EEGs or ECGs despite how painful it might be to attach the electrodes to your head's surface, it's so valuable in detecting where your epilepsy is coming from. MRI scanning too, has completely changed Neurology more than most Neuroscientists could imagine I expect. It's a fantastic tool for using to detect things like scarring on the brain, so despite my dislike of enclosed spaces, it was so worth the time spent in the scanner.

There are so many aids to finding the best possible treatment for whatever type of epilepsy you have diagnosed. Places like, Epilepsy Action, Epilepsy Society and Young Epilepsy, will never not provide you with information and tools like seizure diaries, to help you get to the bottom of your condition.

At the end of the day, when it comes to drilling down into a specific epilepsy diagnoses, you can never give your doctor too much information.

Monday 19 May 2014

Day 2: The Fear Factor

One of the most frustrating things about my epilepsy for me, is the stigma surrounding the condition. I've had to endure it despite having controlled epilepsy. But just the mention of the condition and it makes many people run a mile. I've heard people say that in certain parts of the world, people still think that someone is possessed and that they wouldn't touch them during a seizure because they thought they might catch epilepsy themselves. It's insane.

The fact is that because people who have the condition don't like the reaction they get when they tell someone they have it, they don't and that's when it becomes dangerous.

After having a seizure I've asked many people about what happened during it, so I could explain the seizure to my Neurologist. Usually the first thing they say is, "well it was really scary!"
Even people I've explained how to deal with my seizures too are scared of them. But then I think, well it's not happening to you, but I feel compelled to apologise for scaring them anyway.
When I pushed deeper into why they found it scary, I asked did they think I would hit them or anything, during the seziure, that they might get injured helping? But that wasn't it either.
What it actually was, was that it was just scary to watch. That watching someone injure themselves was unpleasant. I suppose that's why people feel compelled to cause injury to someone having a seizure and hold them down. I suppose they want to make it stop. Ironic really isn't it?

The attitude of watching someone have a seizure and being scared though, I find selfish. It's not something I'm proud of for feeling, but I don't understand why people with epilepsy should ever apologise for something, they can't control, or didn't cause. They didn't decide to have epilepsy so they could have a party trick to scare their friends.

Given when I've seen Grand-mal Tonic-Clonic seizures myself and wasn't scared by them, the only conclusion I can come to, is that it's a question of knowledge. I'm not scared by watching someone have one because I know a) what to do and b) what they feel like from the point of view of the sufferer. So I know that all you can do is time the seizure and make sure the sufferer has something soft under them, so they're not in pain when they come round from the seizure. I know they can't be in any pain because they can't feel anything during the seizure. I know that they won't suddenly jump up and attack me and I know that as long as I make sure the seizure isn't longer than 5 minutes, they'll just come round, have some sleep and get on with their daily life.

For me, that's why they're not scary at all. So when a young guy I helped on the London Underground a couple of years ago starting apologising about making me scared, I simply said: "Why would I be scared? I'm not the one having the seizure." When I asked if it was scary for him, he just said no, I never know what's going on, I just wake up and want to go to sleep.

I suppose people are scared of what they don't know, so as a result, if they don't understand epilepsy, they're scared of it.

Coming from someone who does know epilepsy, after 25 years of having it, I can tell you, as long as the seizure doesn't last more than 5 minutes, there's nothing to be scared of.

Sunday 18 May 2014

Day 1: The Hope Factory

Firstly, I should tell you that I'm writing a blog a day for the whole of UK National Epilepsy Week, which by the way... Starts today!

I woke up this morning, to my music which was playing through the night as it usually does and what will I'm told be one of the sunniest days of the year. It's a good start to National Epilepsy Week in my view and to be quite honest, the sun always makes me feel bright myself and hopeful.

The theme of National Epilepsy Week this year is about diagnoses. While I know the stats and how lucky I was to have had my surgery, I still believe that after a diagnoses, people with the condition should never give up hope of having their seizures controlled or cured altogether.

I think one of the lowest points of my life, was when I had the breakthrough seizure while working in Glasgow as a Police Constable. I had everything planned out, I was almost 19, I had a 30 year career and a great pension to look forward to, financial security, a car and independence and for a teenager, a huge salary and clump of money from the pay I wasn't really using while at the fully catered and residential Scottish Police College.
I had it made.
But life has a pretty good way of throwing a spanner in the works of your plans. One night in Glasgow out with friends, I had the breakthrough seizure. It didn't take a lot to be re-diagnosed with epilepsy again, so I guess I've had 2 diagnoses.

But here's the thing, they weren't life sentences.

What my epilepsy was like before the age of 14, was well, pretty horrific I won't lie. But I went to a place where I was given hope, The Sick Children's Hospital in Edinburgh. Having my Neurosurgery, which I technically had twice... one work up operation, where electrode rods were implanted in my brain for a week or two so that the doctors could very specifically isolate where my epilepsy was coming from, then the second to remove the scar that was causing it. No matter how many side effects I experienced from medications, I never really felt like my epilepsy would be as even as close to as frequent and serious as it was, since it was diagnosed when I was 9. I never understood why really, maybe blind hope of a kid who had a childish optimism, or maybe it was an odd intuition, but whenever I was in Ward 7, I always felt like I was going to be cured.

The second time I was diagnosed, after I got over the disappointment of loosing my career, I began to get focused on controlling what was left of my epilepsy with medication. The funny thing about what happened, was that I still remember standing to attention during my passing out parade at the Police College and thinking, hmm... it's a shame I never got to go to university. As it turned out, I went to one of the best universities in the country, where after getting such enjoyment from playing hockey while in the police, I went on to study Sport at Durham.
Although I had some major hiccups along the way, the number of medications that were around for me to try were huge, so I never really lost my optimism about controlling my few grand-mal tonic-clonic seizures. Eventually I went to the National Hospital for Neurology and Neurosurgery at Queens Square in London. It was a revelation and they sent me to the NSE's epilepsy hospital in Chalfont St. Peter. Not only did they diagnose my epilepsy properly, understand it better and put me on the medications, which so far, apart from the occasions I have forgotten to take them morning and night, (by the way, I'm not a good case study here... Take your medication!!) have meant I haven't had any seizures.

I mean how great is that? I owe a lot, to a really large number of people who looked after me. But the amazing thing is, the technology and understanding of Neurology and epilepsy in particular, is always moving on and getting better. Last year they found what looks like the beginnings of a gene therapy for curing epilepsy, calm down genes in the brain... Brilliant!

The fact we have some amazing hospitals in this country, although I know we're not perfect, means that we should never give up hope after a diagnoses of epilepsy. The Sick Kids' in Edinburgh changed my life. Even though I didn't end up as a career Constable, I got to do some truly amazing things, go to university, cycle across America, coach young kids sport... carry the Olympic Flame!
I wouldn't have gotten to do any of it without the hospital and all the staff in Ward 7, so once the building works are finished there, I'll be making a special delivery.

I'm so proud of owning an Olympic torch, it's one of the most incredible objects around I think. But it's currently residing in where I consider, is not it's rightful home, in my flat. I don't think it belongs here, because of what a small Neurology hospital ward did for me. I want the kids of Ward 7 to know that they shouldn't give up hope either, so I've agreed with the Sick Kids Friends Foundation, to hold it in trust in Ward 7, until my kids (if I have any!) decide they would like it.
I can't really do much to repay the impact Ward 7 had on my life, but I hope this goes a little way to paying some of it off a little and letting the kids there know that there's always hope as long as there's the science and the care around to feed it.

I'm very lucky indeed that I don't need to hope anymore. After developing it two and a half decades ago, I'm just living my life seizure free.

Friday 2 May 2014

How do you define yourself?

Someone said to me recently that I shouldn't label myself because of a medical condition. It got me thinking about how they saw me, but in a bigger way, how they saw themselves? If they don't have the experience to know what you know, then maybe it's worth blocking them out. The phrase 'self diagnoses' seemed problematic to them, but then, maybe that's just because it didn't work for them? We're all different, so look to yourself before you look to others for advice, because it's likely you know yourself better than you think. The conversation also made me think back to a time, when how I was defined, how I was mis-diagnosed, changed the course of my university career.

One of the worst Neurology Consultants I ever came across, didn't want me to label myself either. I thought I might have Catamenial Epilepsy and after looking at a huge range of researched information on it, asked if I could be put on a drug Clobazam. The reply I received from a man who did not have epilepsy was this: "No. It hasn't worked for me in the past."
I couldn't get the medication I thought I needed, but I felt angry that my idea, my knowledge of my own symptoms, was dismissed so readily out of hand. The drug I was put on instead made me effectively loose a year and a half of my life. Keppra.

I think that we should all be given the power to label ourselves if we want to. If it doesn't impact on someone else's life, why should we not be allowed to? My friend Leigh heard a young boy who wanted to become a doctor talk about his ambition to his mother in public. His motivation was that he wanted to cure a cancer that had affected one of his family members, his Nanna. Yet, instead of support, his mother told him, "Don't be silly, you'll have to get a real job." If every child was persuaded away from wanting to label themselves as a doctor, we'd all be ill. As it turns out, in this financial climate, it's actually a brilliantly secure job. It's not just a proper job, it's a career for life.

I believe that if we're empowered to give ourselves our own labels, then that's when we truly allow ourselves to flourish. Embracing the label of epilepsy, means that I'm safer as a result. It means I wear my medical ID every day. I hope the fact I don't want to shy away from the label, means that other people with epilepsy will be treated with more dignity in the future. That they won't suffer the same experience I have and that my friends have because I also label myself as an Ultra-marathon cyclist. Maybe the fact that someone who doesn't like my epilepsy label, couldn't conceive of taking part in the cycling races I do, might make them think twice about what they think epilepsy is.

Understanding yourself, how you work and blocking out the external factors in your life can be beneficial. Sometimes we need the external factors, the family support, or medical support to help us. A guiding hand educating us. But ultimately if you want to shoot for something, go for it and don't let others tell you you're not able to achieve it. If you work hard enough for something you'll achieve it.

For me, I wanted to work hard to find a medication that would control, the tiny few seizures that I did suffer, after surgery, without the horrific side effects. I kept working for it, trying another Consultant who spent more time with me, tested my epilepsy, to find the medication I needed.

I'm now on 2 medications and have been for about 5 years now. Oxcarbazepine and Clobazam.

They're enough to control my seizures and I don't suffer any side effects as a result of taking them. So as it turned out, what 'didn't work' for someone who didn't know me, or seem to want to hear what I had to say, worked for me.

Go figure.