Thursday 10 October 2019

Thank You And Goodnight

Before I was given the honour or carrying the Olympic flame, before I started a journey of endeavouring for world records on my bicycle, I could have never thought I would still be writing my blog all these years later. It may not have been lost on many of you that I haven’t been able to write as frequently as I would like, but it feels like the right time to bring my blog to a close.

It’s actually a coincidence that I’ve been writing this post so close to World Mental Health Day, but it’s not an accident that I’m posting it today. One of the things I think we shy away from talking about is how epilepsy affects our mental health, the medication impacts and the fact the stigma of epilepsy can make us feel down.

But at the end of the day, while the epilepsy and indeed life will challenge you, push you to be someone you might not want to be, get you down… there are those in life that will pick you back up.
These people are like shining gems. Cherish them. 
What they’ll do for you is give you the perspective you need to realise what’s important in life. Because life isn’t always easy, it’s full of ups and downs, set-backs and triumphs. But if you can step back and find peace even for short periods, you’ll realise that some things in life are trivial. You’ll realise who should be truly important to you, or someone who is little more than someone that you “just know”. You’ll realise what should be important in your life and what is something that’s no more than a distraction.

I make no secret of the fact that I’ve struggled with my mental health. The reality is that while my epilepsy could be tough, even if it changed the course of my life, it was the mental health side effects that really affected me, even if I didn’t know it at the time. It’s been the struggle of my life. 
But it was the people along the way that helped give me the strength I needed to push through the worst side effect of all my epilepsy medications – Depression.

It took two shining gems in my life to know what depression was – to know that you can’t just snap out of it, that it takes work and time. Over time I’ve met shining gems who’ve made me reflect on who I am, who’ve made me a better person and made me the person I want to be or work towards being closer to the person I want to be, even those who have been role models that made me realise that I wanted to be like them. There’s been those shining gems who’ve given me the second opinion I needed and who’ve introduced me to a new way of thinking about my mental health.

Two years ago, I started on a path of a different kind of treatment than simply adding more medicines to my cabinet. I didn’t want to be medicated for the effects caused by my medication, so I stopped taking the anti-depressant drugs I was on. I can’t lie it was tough coming off them. The cold turkey style side effects of heart palpitations, light-headedness, feeling physically weak were horrible. Not ideal when you’re trying to play hockey in goal and attempting to save penalty flicks!
But I got through them after a month or so and started Psychotherapy. Sorting through and making sense of all the baggage in my life that was stuck in my head, after three decades of mental chaos. It changed how I looked at life dramatically, but I also felt like I needed to rely on those sessions too. I was afraid if I slipped out of the net of being in the system, that I’d be back to square one. But then something amazing happened. Through yoga, I started meditating.
As I was just about to start a new round of Psychotherapy, I realised I didn’t need it anymore. I realised that I didn’t need to be in the system to feel better. I realised that I could be my own safety net. I’ve made a lot of strides forward in my life with my health, be it physical health, neurological health or mental health. I can honestly say barring the brain surgery that changed my life, it’s been the biggest step forward I’ve ever taken. The irony was I fell into meditation by accident and never saw the impact of what it would do coming.

I still talk about things that are getting me down with my friends and family, but I rely on it less and less. In the same way I’ve come to realise that being honest with yourself is, as important, if not more important than being honest with others. But as I’ve gone through the journey over the last couple of years, I’ve realised how much a small number of people have changed me in the most incredible way over the course of my life. To them, they may not even know they are, but I don’t think I could ever thank them properly for what they have done. For being open about their own struggles, for educating me, for giving me perspective and for giving me strength.

When I slow down my thinking now, I’m not ashamed to say I was just chilling out when explaining what I might have been doing last night to others. I don’t care if someone thinks I’m boring, because how I feel in myself is what I see as the most important thing to me. When I truly calm myself I’m able to really think about what’s important and what’s not. You realise that the white noise of social media isn’t important, it’s just something to do. That creating a life for yourself is the most valuable thing you can do and distractions from that can be wonderful, but that you shouldn’t rely on them for happiness. You realise that nobody should rely on someone else for your mental well-being, that only you can actually control that. You realise while you can’t control most things in life, you have the power to control how you react to them. You realise that at the end of the day, you only have one life to live and to make the most of. 

All I want to do is aspire to act with dignity, to make a life for myself where I derive my living from my passion and a life where I surround myself with people who will be there for me, like they know I will be for them.
It took me a long time to realise that I shouldn’t aspire to be a certain person on paper, that it was the qualities of people who were in a role I admired, be it at work or in life, that was worth aspiring to. So instead of chasing a job title, I want to chase the qualities of hard work. Instead of sitting on the side-lines and admiring from afar the people who are positively changing the world, I wanted to have the resilient, generous and kind qualities of those who were instead. It didn’t matter about how many compliments I got for doing something, unless I truly felt in my own heart that I deserved them. It sounds odd on paper, but what I mean is it’s not the simple fact you’ve done something, it’s what you did to achieve it. Even if things didn’t work out for me, if I could be proud of the way I acted, if I could be proud of the process, then that’s the real triumph. 
I truly believe it’s not the filter other see you through on social media, it’s the light and shade in your life and how you deal with it that’s important. That’s the standards I’ve realised I want to hold myself up to. At the end of the day, that’s what would affect my self-esteem and as a result my mental health.

So given this is the last blog post I’ll write as the Epileptic Ultracyclist, what can I say I’ve learned?

Well… I’ve learned I’m stronger than I thought, even if it’s taken me a while to truly believe that in my heart.
I’ve learned that you can’t simply rely on science, that ultimately people make the difference.
I’ve learned that slowing down and taking time for myself is as important as looking after others by trying to raise awareness and money, and I really hope this lesson isn’t lost on people. I’ll still strive to support where I can, to attempt world records and to ride in purple. But I feel it’s time, after over 7 years of blogging, to pass on the mantle.

I hope whoever picks up the baton can learn from my mistakes as well as triumphs. But know that without the mistakes that I made along the way, I wouldn’t be who I am either.
Life is always going to be full of ups and downs, but when you take a step back, when you slow yourself down, you realise that your head doesn’t need to be full of ups and downs and ultimately the lens you see your life through dictates if it has been a triumph or not.
Just like the level of pain you experience on a bike, it’s you who chooses how much pain you want to put yourself through, how you interpret it and how it affects your mentality. It’s just a matter of perspective.  

All I know for sure is this:
If you want to achieve something or change an aspect of your life, you only need start.
Start a big task by trying a little part of it first, starting taking control of your mental health and your epilepsy by asking for support, start spreading awareness by wearing purple or by talking about how to treat seizures.
Sometimes what seems like climbing a mountain in your head, is actually just climbing a little hill once you begin.  

I hope that my last post provokes someone, somewhere, to start their own blog about epilepsy. We need awareness more than I can say. 
What people without the condition don’t always realise is that even as someone who doesn’t have epilepsy, just understanding the condition can change someone’s mental health. It can improve our well-being. It can make us feel safer.

It could even save someone’s life.

Monday 20 May 2019

Knowledge Is Power

Knowledge is power, or so the saying goes...
But in this case your knowledge is someone else's power.

This National Epilepsy Week in the UK, the campaign is focused around Seizure First Aid and for good reason. Every time someone with epilepsy does something as simple as go to the shops, if they're not surrounded by people who would know seizure first aid, they put themselves in danger. Of course our automatic response as human beings to a dangerous situation, is to try and avoid it or to make it safe. But without help from the people we're surrounded by, we can't be safe. So the default situation would be isolation of a safe environment like home.

I guess for me, my power, my superpower in terms of my epilepsy, is my independence. I'm not as independent as most of the population, because morally I decided to never drive again, but in that sense my bike is my cape. Seizures are most accurately described for me as an annual event or bi-annual event of late, I'm very very lucky. But I don't believe people who have epilepsy should be lucky on a sliding scale. I believe that we should all be equally lucky that we can have the confidence to go out into daily life and know we're equally safe, because seizure first aid is as commonly taught as how to how to ride a bike.

To the politicians in the UK and anywhere else for that matter, I'd simply say this:
Put epilepsy first aid in the first aid curriculum. The 1 in 100 that have epilepsy will have far more seizures than require resuscitation in their lives, so it's highly likely that if you do encounter a first aid scenario in public, it's someone having a seizure.

For those of you who want to help people with epilepsy, I propose this:
You don't have to donate a penny, you don't have to learn anything taxing, just the following simple steps...

If you see someone go into a seizure look at your watch.
- Even for people used to seeing seizures time can go far faster than normal.

If the seizure lasts longer than 5 minutes, call an ambulance.
- It could save somebody's life.

Put something soft under the head of the person having the seizure.
- For people with epilepsy, it could be the difference between a few hours and a few days recovery.

NEVER put anything in a person having a seizure's mouth.
- It could turn an average seizure into emergency dental surgery or worse and you could injure yourself into the bargain. You also can't swallow your tongue.

NEVER hold anyone down.
- While your instinct might be to want to stop someone from shaking, you could be grinding their bones into the ground.

Move anything dangerous out of harms way.
- This one seems fairly common sense, but obviously move dangerous objects out of harms way. Only in real danger should you move the person having the seizure, ideally just provide cushioning around them if possible instead.

And that's it. That's all you need to know to keep someone having a seizure safer. If you forget, just remember my own personal motto: 'keep calm and put something soft under my head'. If you remember that and the 5 minute rule, you're doing a great job. But it's that simple. No complex explanations as to exactly where to position your hands or remembering the recovery position, just stay with them until the seizure is over and they're safe again.

While I won't ask anyone to get on a bike for 12 hours, I will ask you to do one thing after reading this blog, however, I and many others like me who have epilepsy are extremely grateful to you that you have read it... but please share it. Retweet, Facebook share, even pop the blog link in a WhatsApp message, or put it on Instagram, by doing that, you really could be giving all of us our confidence to be independent back.

Thank You.

Tuesday 15 January 2019

A Gap Year & A Medical ID

Any regular readers of my blog (I'm very grateful to you all incidentally), will have noticed it's been a while since I've posted anything here. In honesty, I'm not totally sure where 2018 went and how it managed to start and then end quite so quickly. But it was an interesting year none the less.

One of the questions I've been pondering is "have I done enough yet?", without really knowing what enough is in terms of my riding. On one level, I felt that through the publicity generated by the two 12 Hour World record attempts just over 18 months ago now, then as a result the funds for my two chosen charities, that I had for the time being. It was incredible and I can't begin to explain how much I appreciate every penny and column inch that was given or written.

Being able to give two charities that have had such a profound impact on my life a five figure sum each, was truly something worth all the training and ride pain (then hospital visits) for. The first, the Static 12 Hour WR attempt, ended in Hyponatremia, the last time I had a seizure and then Rhabdomyolysis. The second, the Indoor 12 Hour Track WR attempt, with a fractured radial head in my left elbow, which I realised after the trip to the hospital, I had ridden the entire 12 hours on the velodrome with, having sustained it 15 minutes before I had started the ride.
There were two rather interesting things to come out of those two trips to the hospital though - firstly I didn't develop  Hyponatremia because I had Epilepsy, I developed it because my nutritionist wasn't on the ball. I definitely didn't develop a fractured elbow because I'm Epileptic. That was caused by being a plonker who hadn't put her rollers in the right place warming up. Secondly though, the temporary pain was worth it in the end to finish both rides, because like with any cut or bruise from a seizure, I healed. But just over £22,000 could make a difference to my two mid sized charities I had nominated for the attempts.

To those of you that donated through the blog - I can't thank you enough!

But the question still remains was it enough?

The short answer is I don't think it'll ever by enough by my own standards, because what I was given age 14, changed the life so dramatically that I can honestly say conclusively, I wouldn't be able to live independently without my surgery and how can you ever repay a charity that enabled you to be an independent adult?
The longer answer, is that while I'm able and there's a record to go for that I think could raise the profile of epilepsy and help diminish the stigma, I'll never be permanently in retirement from my Ultracycling.

There's a simpler measuring stick for all of the riding though, which is government change. If I can use my riding (or need to ride more to use it), as a way of demonstrating a point about the need for changes in the law in the UK with regards to employment and driving, I'll always keep fighting and riding.

In the last year, my friend Holly, who is also an incredible epilepsy advocate, has helped me become aware of government consultations about our condition. When we went along to the event together, I was able to make connections I hope to help facilitate asking formally for the change that's needed. But in reality it's just education and awareness that can make that change too.

That's why I propose this...

If you're in a position where you can ride your bike, run, swim, whatever, you have epilepsy and are able to talk about how your condition hasn't affected your ability to do what you love, then talk about it.
Write your own blog, start your own twitter feed, facebook group, YouTube channel even! Comment below and spread the word. But don't be afraid to do it.

So what's my excuse for being so busy I couldn't write a post and say so much as "hello"?

Well I'm beginning a new, different chapter in my work life, at the beginnings of starting a new bicycle company and have been able to take some time to enjoy my other love - music, taking in some festivals when I've not been working.

Has my epilepsy been a factor?
Yes and no...
I've gone the whole of 2018 and not suffered a single seizure, in fact I went the latter half of 2017 without one either. But the Hyponatremia and Rhabdomyolysis I mentioned earlier led to an alarming discovery - that a girl in the Portsmouth had died from a drug overdose at a music festival, suffering the two conditions in the same order I had previously done after the 2017 Static WR attempt. It was a real wake up call that made me so aware I could be misdiagnosed as having a drug overdose at a music festival if I ever had a seizure. I have never done, nor will ever do drugs not prescribed to me. So from now on I always wear my medical ID as my last bit of wrist jewellery when I'm dancing away to Swedish House Mafia, Eric Prydz, Armin Van Buuren or many of my other favourite DJs, that helped me keep my pedals turning during my world record attempts.

      ...And if you were wondering I still cry when 'Don't You Worry Child' is played at festivals thanks to a certain 12 Hour WR attempt playlist (and my Mum).