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).