Friday 15 November 2013

The Pebble Effect

I know social media can be abused, but one of the things the facebook generation has going for them is the ability to link across the world. Six degrees of separation has got a lot smaller and more direct because of the internet.
The biggest thing for me as a blogger though, is the pebble effect. I don't know the 23 people in the Ukraine, or the 181 people in the USA, who read my blog last week I don't think, but it's amazing to me they did.
Above all else, the reason I started Team Epilepsy Forward, was to have a bigger pebble to spread to other pebbles that could mean people were talking about epilepsy and then for the effect to keep going. I'm so proud of being able to carry the Olympic flame with my purple medical band and I find it incredible that on BBC World News I was able to talk about my experience, or on BBC London Radio, in Cycling Weekly or Cycling Plus. I can't thank those people enough for giving me a voice. But I believe I am able to do more, to make that bigger pebble that people can talk about in the context of my condition; epilepsy.

I'm not ashamed to say epilepsy is a part of me, I'm the Epileptic Ultra Cyclist. I also can't believe that in a year and a half, 28,000 people and counting have viewed the blog. My diary in itself has been a little pebble... but my post today is probably the most important pebble I'll ever write about.
So I propose this...
We are all pebbles to pass on something to the next person, who could be the next pebble and if there's anything that is incredibly important to pass on about epilepsy, it's the knowledge about first aid of an epileptic seizure itself.

The reason I started this project, was not only to tackle stigma, but was to try and save lives through knowledge of seizures. More people die from epilepsy than Cot Death and HIV Aids combined every year. But by being a pebble, or even just consuming this info about first aid, you could be saving a life.

The first thing I should say about what is termed a generalised seizure, is epileptic seizures don't all take the form of the effect of someone shaking. If a person is confused looking, not dissimilar to drunk, but is agitated, they could very well not be drunk, or even on drugs as I've heard the seizures being described before, they could be having a different type of generalised seizure.
The second thing I should say is generalised seizures, which are the kind that may require first aid, particularly Tonic-Clonic, despite it looking frightening, for the person with epilepsy is normal and speaking from a lot of experience, during a seizure we feel nothing at all and have almost no memory of the seizure, so don't be frightened for the person having the seizure. We're never experiencing pain.

What is painful however, is for example having grit in my chin caused by the convulsions, which is the shaking part, which I've felt when I came round after I'd fallen asleep. On that note, you'd be amazed how many times I've had to sit in the A&E waiting room chairs, extremely sleepy and desperate to go to sleep because of the rate of my muscles tensing and relaxing.
If you have to go with a friend or someone who has had a Tonic-Clonic seizure to A&E, try and be assertive with the medical staff in the hospital about giving them somewhere to lie down.

With regard to the issues of scraping my chin on the ground like a pavement, there's a really simple thing you can do to prevent it happening and should do during any seizure... Put something soft under the person's head, a jacket or something is ideal.
On top of that, just make sure the person isn't in danger. If you don't need to move them, to get them out of serious danger, just move anything they could hurt themselves on from around them. I know it's a natural reaction, to want to get someone to stop shaking, but please, please never hold them down... it'll only hurt the person having the seizure and never go by the old wives tale of holding their tongue... you could end up hurting yourself too by doing that, or damaging their teeth by putting something in their mouth.

The best thing you can do is just be there and comfort the person when they come round, just put them in the recovery position. It sounds odd as I've mentioned before, but videoing their seizure could be amazingly helpful for the best diagnoses possible... It can't do any harm, if the person doesn't want the video you can just erase it.
The other advantage to videoing a seizure is it means you can know if it's lasted longer than 5 minutes... Time can seem to go very fast being in the situation of helping someone with epilepsy, but if the seizure lasts longer than those 5 minutes, it's the person's first seizure (you might know because they're not wearing medical ID), or if the person has injured themselves in any way... Call an Ambulance.

It's not always needed though to call an ambulance, sometimes the most important thing the sufferer needs after a seizure is sleep. If you're comfortable knowing this is the case, then just helping them to their bed could be the best thing.

All this might seem complicated but there's a great video you can check out to show you what to do on Epilepsy Action's website too... just copy and paste this link:

As for the conclusion to this particular blog post. Well... you are the conclusion.
Hopefully you're the pebble to pass the information on to more people who could turn into pebbles themselves... Before we know it, there could be a landslide of awareness of what to do and simply because you told someone else. It won't cost you anything, but it could make that crucial difference.

These days your twitter account, your facebook account, your Linkedin account, whatever it may be means it can make you a pebble.

When it comes to preventing epilepsy deaths, we can never have too many pebbles.

Tuesday 12 November 2013

The Power of Love

Mid November... the time of year for early Christmas adverts, romantic late autumnal scenery, walks in the park and past Christmas number 1s being prematurely played in department stores.

Like Valentines Day, a joy if you're in a relationship... not so great however if you're not.

Along with the discrimination at job interviews, one of the most common side effects of a lack of epilepsy awareness is when it comes to relationships.
But I suppose for somebody without epilepsy, why would you take on the baggage of the condition? The learning how to deal with generalised seizures, getting used to seeing someone take potentially multiple tablets to control their condition every night... nah, too much hassle!

...If you're reading this thinking: "WHAT! THIS IS RIDICULOUS, HOW DARE SOMEONE THINK THAT ABOUT ME?!" Then you're right. They shouldn't.

If you're reading this thinking: "WHAT! THIS IS RIDICULOUS, HOW DARE SOMEONE THINK THAT ABOUT ANYONE?!" Then you're right... and there's light at the end of the tunnel.

In international cities like London, I think it can be worse sometimes. There's a fast and loose culture of finding the perfect person and I suppose when there's so many single people in the one place, I can understand why someone would be freaked out and move on quickly, because you're not 'perfect'. But it doesn't make what that person did right.
I'm happy to be open when I say that many of the relationships I've had in the past have been easier because my boyfriend at the time had a link to neurology, or had a medical condition himself, so they weren't phased by my epilepsy. But I've also had that look when I've got round to explaining about my condition... or the dreaded text that night, or the next morning. It's horrible and it's unfair, but in a funny way, it has a silver lining to it as well.

For every arse - male or female, who can't deal with the fact you take anti-epileptic medication, or that there's a chance you could have the seizure, there's the good guy or awesome girl, who isn't shallow enough to look at you as a label. In a way, disclosing your condition is a very quick way of sorting out someone who isn't worth wasting time on.
I generally take the opinion that people with epilepsy can be brave, resilient and more sensitive. So why wouldn't someone want to go out with someone as awesome as you?

The biggest thing to remember though is this:
Not explaining what to do if you had a seizure, or worrying about wearing your medical ID, could be dangerous for you. So not only are you making sure you're going out with someone worth your time, but you're keeping yourself safe too.

Above anything else, you have to think about yourself and your own safety first. It's never worth it to take a risk because of a group of people who are shallow and will likely end up worse off than you in terms of a relationship.

You're awesome and that means every part of you, so you should never be ashamed of any of it...'s what makes you, You.