It's National Epilepsy Week

This year Epilepsy Action are asking what it’s really like to be diagnosed with epilepsy and letting you know what support is available.

So I thought I would try and answer that question.... 'what is it really like to be diagnosed?'

In one word...  SCARY. It was scary for me, scary for the people closest to me and scary for the people seeing me have a seizure.

It seems a long time ago now, I've been diagnosed with epilepsy for around 10 years, but I probably had epilepsy my whole life, it's just I only suffered focal seizures until 10 years ago.  But I still remember those first few months, a blur on one hand because of the seizures and yet a time I will never forget.

I remember being told it was epilepsy and being told I couldn't drive anymore and just bursting in to tears.  In fact I did a lot of crying in those first few months, crying because I woke up from a seizure confused, crying because friends didn't want to know me anymore, crying because of the side effects of the drugs...

But as the months and years have passed and my seizures have come and gone with no rhyme or reason it has become part of life, part of me and I have learnt to accept it.  That doesn't mean I'm not still scared, the fact I could have a seizure at anytime is scary, I have just learnt to manage that fear and put it to the back of my mind most of the time so I can get on with living life to the full :)

The most important thing is to find support, I am so lucky to have my wonderful family, friends and neighbours.  

The second most important thing is to find out all you can about your condition that way you can advocate for yourself, sadly doctors are not always right and by learning as much as you can you can find the one who knows more than you do and who you feel safe in the care of.  It has taken a while but I feel very lucky to have my epilepsy specialist and the nurses at Queen's Square looking after me.

The ups and downs of epilepsy awareness talks

Giving epilepsy presentations is a strange thing sometimes.  I get quite nervous when I do them, but I think they usually go quite well.  But it is amazing how the audience makes such a huge difference. Sometimes the room is filled with people who would rather not be there but have been made to go by a manager!

But this afternoon I went to a really inspiring school who truly wanted to do as much as they can to support a little boy who had what sounded like quite severe epilepsy.   They were working so hard to give him as much independence as possible while keeping him safe considering everything from reading time (where he often fell asleep) to going to the toilet.

I always find it easier to answer people’s questions rather than just talk at them and they asked so many questions mainly about how what they had heard could impact on the boy himself.  They are in contact with the little boy’s consultant it gives them a huge opportunity to help him and I think the training left them with 2 key points which I think are important for everyone:

•         Know what it normal for the person so you know when to seek help
•         Know what’s important to monitor both from a seizure point of view and also the medication side effects.

It really gave me hope that trying to raise awareness of epilepsy is making the world better for people facing its challenges even if it is just one person at a time.

Getting Riley into Horses early!

On Saturday we went on a girly day out to Badminton Horse Trials, my mum, Riley and me (3 generations). The weather wasn’t amazing but somehow we seemed to find a break in the heavy showers and didn’t get too wet.  The wind was pretty bracing though.  And it struck me that walking the however many miles (mainly with Riley in the back carrier, but she walked a long way) there were children of all ages (even tiny babies) and I didn’t see a single child whingeing.  Basically I think kids brought up around horses are pretty tough and I’m so glad Riley is one of them.

Riley's Swimming Lessons

Riley is still doing swimming lessons on a Sunday and it really is amazing what she can do at only 2.  I’m not saying she can swim lengths; she can’t even swim a metre.  But she jumps in off the side, can turn herself round in the water and can climb out of the pool.  I think the most amazing thing is she is just so confident in the water, she goes underwater and just looks so happy in the water.  She really is a water baby.

But the biggest thing she can do is climb onto a big float, run across it and then jump into the water.  It really is amazing, I wish I could show you a video but alas it takes other children and parents to hold the float so I can’t.  But you’ll have to take my word for it, it is amazing!

All change on the meds front...

Ok so now it’s definitely going to happen… 2 seizures in 3 months is not good for me. A med change is inevitable.  I know I could just call my epilepsy nurse and we could start the transition to Keppra straight away, but that just seems such a light way to make a huge change.  

I feel I need to discuss it with my consultant, I don’t know why really, I guess I just have lots of questions and would rather ask them face to face.  How long will it take? (I know the answer will be we don’t know) What happens if I get side effects? Is Keppra even the only option? The list goes on and on…

I guess the truth of the matter is I’m really anxious about it all, I mean 10 years of being on 1 drug, at least I know where I am with Lamotrigine.  I’m worried Keppra is going to change me and I won’t know it.

Anyway at the moment I’m trying not to think about it too much, the sun is out and I’m just going to enjoy it.  My appointment is at the beginning of June so after that I know there will be challenges to face but for now I’m going to try not to worry too much.

Our amazing American adventure in pictures

Where do I start?  It was amazing!  I think it will be easier to put it into pictures so here it is…

We're on our way :)

Welcome to America (at 1am London time)

Riley's behind bars! (at Alcatraz)

Gotta get a Tram in San Francisco

]

Baby, Mummy and Nanny

Winchester Mystery House

#DancingRobot

Exploring Gold Country

The Big Trees

Exploring the wild west (film country)

The beautiful Emerald Bay at Tahoe

Snow!!!

Rich and me on skis together

My wonderful Dad who looked after me during my seizure

So Cool!

Auntie Nikki and Riley on a sledge

Some apres ski

Groveling around in the dirt :)

Fun in the desert

How old are we????

Enjoying the Oasis

Badwater

The view from our beautiful hotel on the last night

Seaworld

One exhausted baby!

Last stroll along the beach

Sleepy, happy baby flies home :)

All I can say is it was an incredible 2 and a bit weeks :)

The Crash Reel

I watched The Crash Reel yesterday...

The dramatic story of one unforgettable athlete, Kevin Pearce; one eye-popping sport, snowboarding; and one explosive issue, Traumatic Brain Injury.  A comeback story with a difference.

This eye-popping film seamlessly combines twenty years of stunning action footage with new specially-shot verité footage and interviews as it follows U.S. champion snowboarder Kevin Pearce and exposes the irresistible but potentially fatal appeal of extreme sports. 

An escalating rivalry between Kevin and his nemesis Shaun White in the run-up to the 2010 Olympics leaves Shaun on top of the Olympic podium and Kevin in a coma following a training accident in Park City, Utah.  Kevin's tight-knit Vermont family flies to his side and helps him rebuild his life as a brain injury survivor.  But when he insists he wants to return to the sport he still loves, his family intervenes with his eloquent brother David speaking for all of them when he says, “I just don’t want you to die.” Kevin’s doctors caution him that even a small blow to the head could be enough to kill him. Will Kevin defy them and insist on pursuing his passion?  With his now impaired skills, what other options does he have?  How much risk is too much? 

It is an amazing film which portrays brain injury in a very real way.  It is filled with amazing stunts and highlights the sacrifices behind them.

It really got me thinking... do I think about the risks enough?  Am I so intent on not letting epilepsy stop me from doing anything that I can't accept that there are things that I just can't do.  Like my job, I felt like I'd failed because I couldn't do the job I wanted, but am I too focused on succeeding in everything that I can't accept when there are things I just can't do.  Like running the marathon... it's something I could have done, before my epilepsy started... but my epilepsy may mean I just can't do it and I shouldn't see it as I have failed.  But at the same time maybe I need to think about my family, how hard am I going to push myself? I can't do it in a year, I'm not like I was before and I need to accept that.

I guess what I'm saying is maybe I shouldn't get so obsessed about not letting epilepsy stop me doing anything and then feel I've failed if something doesn't work out.  I think part of me doesn't want to look at the risks, just keep going without thinking about the possible consequences, but maybe there are things which I have to say no too, I think I need to learn to accept that.

It is definitely a film everyone should watch, it will really make you think...

http://thecrashreel.com/home.php