NEW ADVENTURES

2016. Where have the years gone? They say time goes quicker as you get older, I prefer to say that time flies when you’re having fun.  And I’ve had lots of it. Fun that is!

Since I turned forty in 2013, life couldn’t get much better. Of course I’ve had my bad times, bad days. For me that will never change. But life is all about taking the next step despite your circumstances. Which is exactly what I do. To be honest I never believed that turning forty would be such a huge milestone and would feel so fantastic. If anyone had told me at fourteen that I would have felt as I do, I would have said take me there now!

Looking through my blog, I’m disappointed to see that I haven’t written about my experiences travelling to Lourdes which I should have done, especially the holidays with WOGLE and Across, who I travelled with for twelve years in my late twenties and early thirties as a helper. There are many stories, many memories that I can recount from my time with them – it was a very rewarding time in my life that showed me there are so many people out there in a worse situation than I am. Many of the sick came from respite homes, had little family stability or had life-threatening illnesses. Despite that, for the week they spent away from their normal daily life, they smiled and laughed as if they didn’t have a care in the world. It made me realise how lucky I was and what I coped with on a daily basis was nothing compared to what they had to deal with.

Sadly, as all things do, the trips came to a natural end.

So it turned out that in 2013, not only did I turn forty, but other things happened too. I moved into my beautiful forever home that I am continuing to make my own, a lovely pastime. I also went back to volunteer at my old school Treloars College, finally using my degree – and am now been in my third year working in their Learning Resource Centre, as one of the contact points for all enquires, issuing and returns etc.

Treloars is a very different place to how it was when I was a student. It’s had a complete overhaul and now has all the mod cons for wheelchair users.  When I was at the college, the library was exactly that, just a room full of shelves of books that we had access to most of the time. Technology has advanced so much now that for the first year I worked in the college, I watched the students use all the new high tech facilities in wonder. It literally blew my mind seeing how much it helped them.

And in between all this I continued my travels, which brings me to my latest adventure. Next Thursday I will FINALLY be catching a plan to Sri Lanka, the country I have wanted to visit for a very long time. Combining the two things I love most, I will be working in an orphanage with disabled children for six weeks and then also doing a little bit of sightseeing at the end – although I fear I might just be collapsing!

The start of something amazing….and a series of new blogs on their way . . .

JORDAN SMITH SEIZES HIS NEW STORYLINE BRILLIANTLY

For those of you who watch 'Neighbours' you will know who Jordan Smith is, for those of you that don't you won't.  Sadly, the Ozzie soaps get a bit of a battering over here in the UK.  If I admit to liking Neighbours or Home and Away, then I often get 'oh god you don't do you?' So I keep my opinion to myself and enjoy them as my guilty pleasures.

The sad thing is that unlike our own homegrown soaps, the storylines in both Neighbours and Home and Away deal with issues that that people can learn from in away that is morally right, instead of using death, crime, destruction and cattiness. Take Jordan Smith's new storyline for instance.  Jordan plays Andrew Robinson in Neighbours who after a terrible crash with his friends, starts experiencing headaches, dizziness and nausea. The symptoms eventually leads to him being diagnosed with epilepsy.

The whole thing storyline is thought out thoroughly, how he believes the symptoms will pass, and it is only when he leaves the video on record by accident that he sees himself fitting that he goes to the hospital.  He had had a drop fit and not realised. Here in the UK we are at the point where Andrew is in denial trying desperately not wanting anyone find out, especially not Paul.

As Jordan told Young Epilepsy in a recent interview 'Andrew is really self motivated guy. He believes in himself and he believes that he is going places. Being diagnosed with epilepsy completely knocks him for six and changes his plans.'

Jordan has always played Andrew well, exactly as he is meant to be  portrayed that 'self motivated guy who knows he's going places' but with this new development in his character, we see that Jordan has become a mature actor.  As an epileptic, I can very easily say that  having the condition is horrible, scary, confusing and hard at times, learning how deal with the stigma attached to it. But trying to act the part of an epileptic and making it realistic is a very hard thing to do. But he has done it.  The video cam scene was cleverly done and not so violently as many programmes that I watch here such as as Casualty, for the actors who have seizures there are very dramatic. There way they shot Andrew having his seizure on the webcam was much more realistic, and not so hard to watch.  Afterwards, as I watched Jordan act the confusion, disorientation and general feeling of 'shit what's happening to me' that you feel as you experience different symptons or 'shit I've just had another one'  I wanted shout 'good on ya mate!'.

And as that determined self motivated streak rears it's head, I found myself completely emphasising that he wants to get on with his life, the way I've been doing for the  so many years, I've never let my seizures get in the way of how I live my life. I've travelled to many countries including Australia. In fact when when I was in Sydney for 2 months in I was experiencing blurred vision (sometimes called nistagmas), dizziness and sickness because i was trialing a new drug, and most days I couldn't do anything until expect drink peppermint tea until the afternoon.

And as far as the storyline goes, thats what it trying to say as Andrew tries to self medicate, showing that you don't muck around with drugs because as the nurse Aiden explains, it can changes your brain chemistry and gives you all sorts of different side effects. That, added to the way Andrew is determineed to deal with being epileptic on his own, explains why he is getting very snappy in the current episodes in the UK. Another aspect which Jordan has dealt with very well.

By bringing epilepsy into Andrew's charcater, shows that it is something that Australia is concerned with and want it is something they want to make their country aware of. It is something I have wished for a long time. We have good charities here such as Young Epilepsy, Epilepsy Action, The National Epilepsy Association but I've rarely seen them use the media to get awareness to the British Public.  They mostly use social media and youtube, which yes I grant you has a big audience, but there are still many people who I talk to and say, 'I wouldn't know what to if you hadn't told me or shown me your protocal that you carry with you.' and often I get 'people don't talk about it in schools.' Using storylines in soaps, asking celebrities to donate to charities on game shows these things make things a big difference to relate to the public who have a child with epilepsy and don't know what to do, similarly with a carer looking after a client, who has a problem - it will put them in touch with them.

So I'm looking forward to seeing how Andrew's story develops, and how he copes with it, although there is no doubt in my mind Jordan will do it justice.  I would love to meet him one day....and besides I have become quite partial to that Scottish twang........

A WORD FROM THE HEART - PLEASE PLEASE HELP FIND APRIL JONES

A week ago, five year old April Jones went missing in Wales.  A missing child, it's a mother's worst nightmare at the best of times, you have to have eyes in the back of your head to make sure they don't go wandering off when they are so young! Granted, I'm not a mother, but my friends and family are and I've been around them long enough to witness the panic that they can feel if they lose sight of a child just for a split second. And now, as an Auntie, even my own heart stops when my niece and nephew aren't with me.

Since April went missing, the police have charged a local man, Mark Bridger with three counts, 'child abduction,'  'murder', and 'attempting to pervert the court of justice.' Here lies the conundrum.  As far the public know from reports in the media, the only reason that he's charged with all three counts is because the police had 'sufficient evidence'and that he was found wandering near her home the day she disappeared. Does this mean he was staking his claim to take her?

For those of you who may be thinking, surely she is not arguing his case? No, I am just putting the two sides forward.  They have not found a body yet and we don't know the 'evidence' the police have against him.

I find it very difficult that the police can charge a man on three counts in a case that has such a high public profile, a case that is so heartrendering to the of people Britian because April has cerebral palsy. I for one want to know what the 'sufficient evidence' is.

As a young adult with cerebral palsy I would have naively said that there is no way that a man could take such advantage of a child. But it wasn't until I saw and experienced things at school, that I realised how unkind and cruel men can be.  And as I head towards my 40th birthday next summer it is still hard to except that it is a fact of life. Men have and will prey on women and children, only these days, because of the way the media works, we hear about it more often than we used to. Look at the recent  discovery about Jimmy Saville for instance - how did he keep manage to keep it all so quiet all his life? The fact that the women are only coming forward now is just dreadful. Imagine what they have suffered emotionally all their lives.

However, this is not about Jimmy Saville, this is about April Jones.  April Jones, a pretty five year old girl whose favourite colour is pink.  I do not know her but in the pictures she doesn't look like she has cerebral palsy.  And if this is the case, then like me, she may not be badly affected, even if she has to overcome difficulties with speech, physio and occupational therapies.  I would hate for her to be taken away at this young stage in her life when she could have a full a life as I have had

So please, from the very bottom of my heart, please say your prayers that she is found healthy, happy and returned to her parents safely. I can't imagine what they must be going through.

And God forbid her body is found, and Mark Bridger is found guilty......

Water Condoms

I bet you're wondering why I'm talking about water condoms? Well I've been trying to find a way of explaining an expolisive head which I've had a few of recently. I'm sure many of you understand what I'm talking about, but for others out there who don't see the daily struggle that epileptics go through, for who it is an invisible illness, I'm hoping it will make them understand a little better.

For those of you that have read my previous blogs, you will know that I call my partial seizures ices and I that I say that tingles feel like thousands of tarantulas running up and down my right leg and arm. There's also the crabs, which depending on which way the conversation is going can be a bit of a dodgy one and maybe I should change it to crabs claws instead to explain the way the crunching my stomach, which makes me feel that something dreadful is going to happen, yet another type of aura which often leads to tingles. As I'm wrting this, none of it sounds the least bit funny, but when I'm talking about it, I laugh about, try and make light of it because as I found over the last decade, it helps to add a bit of humour when you're trying to explain about epilepsy. If you get people laughing about it rather than facing them with blind facts, they don't feel so scared and in turn, you don't get the shakes, the sweaty palms and the nervous stomach or the stutters.

The idea to explain the explosive brain syndrome came to me when I was watching an episode of 'One Tree Hill' a couple of weeks ago. In the episode one of the characters was throwing filled water balloons off the roof of her flat to get rid of the frustration and anger. And then I remembered a time when I was at school that condoms filled with water were a great source of amusement in the park on a Saturday afternoon, so I just changed things around a little bit.

And so to explain. Explosive brains last up to two days and feel as if a water condon has been inserted into my brain. The pressure around my head is immense, I feel incredibly tense and I desperately want the condom to burst, so that I can cry and relieve the strain that is tightening up my forehead like screws. Lines appear as each one is secured into position, my eyebrows start moving further together until they are almost glued together. This is what I see when I look in the mirror, along with bags under my eyes that have turned into black punching balls.

I'm very sharp when I speak to people. The other week my sister said I sounded very 'businesslike' on the phone and I had to expain why. At the time I didn't know what to do with myself. I was fidgety, spending most of the day picking my nails and walking round the house
utterly disturbed, and wishing that I had a pin that I could stick in my brain to burst the condom so that the torrent of water would come gushing out. But it wasn't it until the next day that the dam broke and I was able to sit down and cry. Then I just let myself cry as and when I need to because I know the pressure is relieving. It's always such a relief.

I hate suffering like this, but I read a good qoute on twitter recently:

'Never regret. If it's good it's wonderful. If it's bad it's experience.'

Have you ever had a fit in public?

That's the question that Epilepsy Action asked today on their Facebook page. And my answer would have been yes. Only when I went to the website to fill out the survey, the first question was 'Have you had a seizure in the last three years?' And of course I hadn't. A good thing for me, although I hasten to add I've had plenty of near misses.

As I went through the survey I found the questions were all multiple choice and because I'd said no to the first question I wasn't able to tell them about my experiences of public seizures. And I've had them, and have had to learn to deal with them and how the public react.

I've only had a few drop fits. Even if they've changed over the years, I've generally always had a warning, whether it be a flashing light, strong tingles or just a overpowering sensation that I would be hitting the ground in seconds. So I'm very lucky really, for the majority of seizures I had, I've always been able to get into a safe position.

The first fit I had in public was in 1984. I was in London, staying with my best friend. It was a hot day and we were taking a walk in Hyde Park. While we talking and laughing together, I had a strong ice which was followed by the blinding light. I knew straight away that I needed to sit down so told my friend and she led me to the nearest bench, which is when the shit hit fan.... you see it was the first time my friend had seen me have a fit and besides she was still young, we were both only eleven at the time.

I can't imagine the scene. I was doing my best to stay in the recovery position which was the most comfortable while I was convulsing like mad. Only when I started vomiting, my friend and her mother pushed me into an upright position, shoving a cardboard box in my face. All this made the fit much, much worse and it became a battle of wills. I was constantly trying to lie back down on the bench, while they where continually pushing me back up into the sitting position. It all sounds rather comical as I am writing it now but it was actually one of the first dreadful seizures that I've had.

A couple of months later, I was an inpatient at the Maudsley where I was being tested for brain surgery. My consultant had given me permission to go out for a couple of hours, and I was in Paperchase with my mother. I can remember knowing that I was going to fall, shouting out for help and then the next thing I knew my head hit the floor with a great thud and I was watching feet walk past me, even stepping over me. Nobody stopped to help or to see what was wrong. I remember thinking how cruel it was.

I think that I had those fits at such an early age was a good thing. While I never went round with a label saying 'epilepsy, handle with care,' I think it made me more aware. When I started boarding school, there were many times when I would to lie down in the street in the onset of a seizure. I don't know whether it was coincidence, luck or whether I was being looked after by a higher power, but there was always someone with me when these occurred. I was lucky, because I didn't have the strategies in place that I have now. Back then I was only wearing a medic elert bracelet, which didn't make me feel very safe because it only tells people that you're epileptic and not much else.

Just over a decade after I'd my first fit in public, I was on my home from after a long day at my work placement, the information department of a top advertising agency in London. I'd just got to the entrance of Green Park tube, when I had strong complex partial seizure and then seconds later was blinded by the flashing light. I'd had a mobile phone for a year and sods law, this was the first day I had forgotten it! Because of that, for a split second I panicked, walked up and down the street trying to work out what to do....in the end I decided to try and make it to Waterloo and make a phone call from there. Looking back, it was probably one of the bravest decisions I've made because I could have fallen at any time and I still dread to to think what would have happened among the sardines in suits that occupy London's underground.

But here was where I was lucky once again. And by lucky I mean very very lucky. At that point, an old friend of my sister's who'd only met me once or twice saw me in the crowds at Embankment as I made my way on to the right platform. She could see I was in trouble and stayed with me for the rest the journey when I told her that I was trying to get Waterloo so I could make a phone call. It ws a hard journey, by then I was blinded and there were no seats.

I didn't get to make the phone call. As we got out of the tube, I knew I had to lie down. Unfortunately because of the crowds, I had to lie at the bottom of the steps that led in and out of the platform. Not exactly convenient, but I had no choice. After that I only remember thinking that I was never going to see my family again, because I was in this dark tunnel and then when the paramedics were carrying me up the escalator I remember seeing everybody staring at me. Even in my spasmodic static, I wanted to stick to fingers up and shout 'what the hell are you looking at? You didn't stop and help did you?' This may sound angry, but it was more frustration than anything else.

When I finally came out of the fit in St Thomas's Hospital, my sister's friend, Emma I think she was called, was still with me and she stayed with me until Mummy got there. What she did tell me though, was that the paramedics were so impressed with the card that I carried around in my purse, that 'they thought everyone should have one.'

That card was a work in progress to what I carry around now. Initially the card stated that I had cerebal palsy and what to do in the event of generlised seizure and it had all the emergency numbers to call. Today I carry around a 'Protocol' which has been agreed by a specialist epilepsy nurse at Chalfont St Peter and my Consultant Professor Sander. It states all the different seizures that I experience and the drugs to treat them with. Again it has all numbers to call.

Sadly when I filled out the questionnaire for Epilepsy, when they asked the question are you afraid of having seizures in public I answered 'No'. But the truth is, having seizures in public is never easy, always frightening, but if you have the strategies to deal with it, it always helps. Only I couldn't tell them this.

Sink or Swim in the Alcohol of life

On October 18th the NSE announced a new incentive called 'University Challenge'. On their website they claim that with the plan 'we want to make a difference to the lives of people affected by epilepsy.'


They go on to say that 'our audit of university websites found that 239 out of 305 universities had no information about epilepsy on their websites which means only 66 had any mention at all. Only 13 had provided any links to organisations like NSE who can fill the gaps when it comes to support, treatment and information. Just 49 universities mention epilepsy in the disability section of their website and only four universities had detailed information about the condition and the support they offered.

My initial reaction to this incentive was a little sceptical. When they first started to promote the incentive on their website they created cartoon strip called Jo's story, who was an epileptic university student. The tale ran over a number of weeks, but it seemed to focus on the negative aspects of uni and was perhaps a slightly childish form od media to use.

Not that I'm saying uni is easy, far from it and back in 1994 when I began my undergraduate degree at the University of Northumbria in Newcastle, even though my health was much better than it is now, I admit with hindsight that I struggled with the workload and that I had chosen a difficult subject or it may even be that what I know now I didn't know back then - that I had more brain damage than they initially thought at birth and shouldn't have been capable of completing a degree. But the whole point was I wanted to go to uni, because all through my school years I'd been told that I'd never get any good qualifications, which made me all the more determined to prove everyone wrong.

And I also know between 18-21 when you are chosing, applying, and going to uni open days, the trepidation, and excitement when your guide tells you that 'the friends you make at uni will be your friends for the rest of your life.' I remember wanting to jump and down in jubilaton, as thoughts of clubbbing all night long, doing rounds and rounds of pub crawls and enjoying all night drinking sessios in friends flats. But a second later fear and anxiety crept in. What about the epilepsy? How would it affect everything, my work, living arangements, would I meet a man and most importantly would I make friendships that would last a lifetime? But I pushed all those thoughts away because I'd never let the condition affect my life. If only I'd listened to them for a little bit longer........

In the first and third year - the year I should have been working the hardest - I played hard. I was naughty, I didn't give a damn about my seizures, I was determined to get my degree but I was determined to have a good time as well. In the first year a typical night out would be downing five lethal cocktails in test tubes, before going aboard the Tuxedo Royale, fondly nicknamed 'the boat', where you could get triple shots for a pound each and dancing the night away on the revolving dancefloor until 3am, I seem to recall having eighteen shots one night, on top of the test tubes, I'm sure you can imagine the result and how I woke up feeling the next morning! And most weekends we trailed round The Big Market, laughing at the 'handbag girls,' a name we gave the Geordie lasses dressed up for a 'night out on the toon' in skimpy skirts and summer tops, and looking out for the local talent, and oh yes there was the odd snog or two. I was a good girl with the other stuff, just pretended I wasn't to impress my sister......

But I found out very quickly why they called those three undergraduate years the 'university of life.' As a person you change very quickly and that's largely down to the people you meet, for you become more independent and confident. There was a situation at the of my first year, when I was rejected by some girls who I had come to view as friends when I found out that they were more, perplexed is the only word I can think of right now, about my epilepsy than I realised. And it hurt, very badly, then. But five and then ten years later I saw that it was the best thing that could have ever happened to me, for it changed my outlook and the way I needed to portray my condition to others, that I needed to become more positive, talk about it in a jokey way so it's more 'user friendly,' therefore taking away the stigma of the condition.

In 2007 ten years after graduating, I applied again, this time to a Masters. The experience this time was completely different. Most of the students were younger than me and I had decided to do it part time so there was really not much of social interaction with them. Which actually was fine with me, at that point in my life I'd been there and got the T-shirt with the whole clubbing scene, and besides, the lighting in the clubs had started to get stronger and I couldn't cope with it as easily as I used to. 'Back in the day,' I used to be able to just shut my my eyes and block out the strobes while I was dancing in the clubs and the student union, but as a child my aura was strong flashing light that blocked out my right eye. Now I was getting older, I was becoming more sensitive to bright lights.

Anyway what struck me on the first day, as I was walking round the campus trying to find the right building that I should be in, was that I had no idea at all about the medical facilities at the campus. Whether they were available to me, how many nurses there were, if there was doctor on site....the questions suddenly started dipping in and out and swirling faster and faster round in huge circles like a rollercoaster until I my chest tightened and I couldn't breath. What would I do if I had a generalised seizure, otherwise known to joe public as a grand mal attack. You know, the ones, that if you've read anything about seizures then you'll know that I collapse and won't be able to communicate. They're also the ones that because of the stigma over my lifetime, most people have ignored in the past on the assumption that you're a drunk on the street. That all this knowledge - for in contrast, when I applied to Newcastle I'd been support pack, detailing everything from finance to medical to educational support - had not been provided suddenly hit me like a ton of bricks that were crashing until I was hidden under the pile of rubble. Funnily enough this is often how I feel after I've had an ice, (which is what I call my complex partial seizures).

So after settling in and thinking it over for a a couple of weeks I did what I would have done back then if I had a problem. I went to see my personal tutor. Little did I know that the meeting would turn my life upside down.

To cut a long story short, I fixed an appointment with my assigned personal tutor via email, telling him what I wanted to discuss. When I arrived he seemed to have no knowledge of what I sent him. So, I began my usual spiel, showing him my protocol and a rectal tube of diazepam, asking if there was a medical officer on the campus. This however, was where everything went tits up, he officer to administer the medication himself. I was shocked but managed to keep my composure, informing him in no uncertain terms that it would be embarrassing and completelely unprofessional. Finally he got on the phone and left a message with the medical centre, but part me will always wonder whether he was making a fake phone call - you know, how they do in the films and on TV.

I wish I could tell you that was that the end of it but after that things seemed to go from bad to worse. He came round and kissed me on the check, patted me on the leg with the words 'we're ok now aren't we?' I wish I'd kicked him in the nuts right then and walked out but shock does funny things to you, so I deflected the conversation and asking him about how much support I'd be able to get and that's when he made other completely inapproriate comments that if I mentioned I'd be here for ages

Needless to say I complained, he could have been a threat to anyone, he took advantage of me because he thought I was vulnerable but the girls on my course were pretty and good looking and I wanted to save them from what I had been through.

However, two months of stating my case to a chosen panel in the university, the outcome was sadly was that not even a reprimand was given and he was only provided with 'health and safety training' so that he could manage these situations in the future. I was appalled, the university had just brushed the matter under the carpet. Sadly I was not able to continue my studies as I knew that I would get to stressed, every time I saw him which would lead to more seizures.

I recently went back on the NSE website and saw since October when they first created they have now also uploaded information sheets for both Universities and students. All of these can be printed or downloaded. The University factsheets are a great source of information for any educational institution that may not feel it is able to cope with such a condition as epilepsy, and of course it would also help if they took action on the points particulated there.

The factsheets provided for students are clear, make common sense and really, are full of advice that you would give any student who was thinking of going to university whether they had epilepsy or not. Although the introduction they used in the 'Feelings and Emotions' factsheet made me smile and I wish it was phrase I'd thought up, that when you're planning on a higher education, 'you didn't plan on your university suitcase having epilepsy in it.' But then those of us with the condition didn't really plan on have on our life suitcase having epilepsy in it all........

So when it comes to taking steps like going to university it is very important to have the information you need to feel supported in your chosen field, but it mustn't just come from information on the internet. It must come from the university, knowing that you will by the institute that you will be receiving your higher education from is very very important. I had very very supportive tutors at Newcastle who gave me at extra deadlines and help when I needed them....and the other must come from within yourself, you must feel independent and strong enough to deal with other people's reactions to the condition which I garuantee is not easy at times, but if you can do it, go for it...it's a great experience to help mould your life.

Talking about it

That's the trouble in the UK, we don't talk about it. We say we do, we think we do, but we don't.

On the 24th August the the National Society of Epilepsy on facebook advertised that:

'Woman's Hour would be discussing the possible legislation so that all schools are required to have required to have policies on caring for students with medical conditions such as epilepsy.'

I've started to listen to Radio 4 on the BBC iplayer on the odd occasion, and when I saw the comments on facebook that were written in reaction to it, thought it might be worth a listen. However, I was incredibly disappointed when the programme used the story of a boy with diabetes as their main case study. And please don't think that I'm trying to think that diabetes is in anyway easier to deal with, I know a eleven year old girl through my stepsister who has the diabetes and has to inject herself and test her blood sugar level before every meal, but I digress because we are talking about epilepsy and what I want to know is, what was the point of NSE advertising it on their facebook page when the programme only mentioned the condition on the programme once or twice....the whole point of the society and their sister charity Epilepsy Action is to raise awareness of the condition, and in this case, they did not do it.

I did at one point, a couple of years ago, try and get involved with Epilepsy Action, as an AV (Accredited Volunteer) who 'provided one-to-one support, advice and information about epilepsy.' They also 'give epilepsy awareness presentations to local groups, care homes, schools, companies and any other organisation that need an awareness session.'

It was exactly the sort of contribution I would have liked to have made to the Epilepsy community, having grown up with the condition since the 70's I knew how little awarenesss there is out there. However at the time my stamina meant that I wasn't able to attend the training sessions in London which started at nine am in the morning. Now I wish I had. When I walk down the street I never see people collecting for 'Epilepsy Action' or 'NSE.' No, it's always Oxfam, Guide Dogs for the Blind, Cancer Research or some other such charity that is more well known.

Sadly, our epilepsy charities have failed to deliver the target of the AV's to acheive by visiting schools and organisations to increase awareness. This was only highlighted by a mother who told her daughter's story on the NSE page as a result of Woman's Hour. Her daughter, lets call her Leila started having tonic clonic seizures when she was twelve (2008). Her hospital were very good in carrying out tests and referrals her Paedtrician eventually diagnosed Idiopathic Primary Generalised Epilepsy and she was started on Epilim straight away.

Leila continued to have tonic clonic seizures as she was reaching her ultimate drug level on Epilim (2500mg). Amanda, her mother knew she needed to tell her school what was happening. So she informed her head of year who in her words 'did nothing to pass on information about her condition to her teachers despite letters from her Paediatrician and the school doctor.' So Amanda then had to write to every one of her teachers and eventually the Medical Office took notice, issuing her a 'get out of class'card if she felt tired/ill or needed some quiet time. Yet every school year, this information wasn't being passed down to new teachers so Amanda had to keep writing letters to make sure these teachers were informed.

Now, two years after being diagnosed Leila has slowly going through a process of withdrawing from Epilim (currently on 500mg every other day) as her fits have decreased to the point where her Paedritician thinks she may be growing out of it which would be fantastic for her. Yet the condition has to stay on her record and when Amanda tried to explain this to the school, the teacher's reactions only highlighted that ignorance of epilepsy is still present in today's society. They believed they could wipe her medical record clean and that she had been 'cured' of epilepsy. Despite what people might think, it is a huge risk coming off anti-convulsants.

Epilepsy is one of those conditions that so many people are scared to talk about. There's that horrid word 'misunderstood.' So it's up to the epileptic to educate others but even for us, it's one of the hardest things to do. I have so many memories of my palms sweating when I had to tell someone in my early/mid twenties, by then I was able to read their body language. I never knew what I would get back then fear or acceptance. These days, I make a it a conversation point, showing what I've done despite having 'head trauma's.' I don't let it stop me and I never will.

But that's why we need to talk about it, so that people see that it's nothing to be scared of, that it doesn't make us any different. Since I've started writing this blog, I've also started Twittering. I never thought I would, I found that twitter.com became a great way of finding out what the rest of the world were doing to help epilepsy awareness. One of my greatest finds is a website that was the inspiration for the name for this particular post called talkaboutit.org. It's the most positive website and proactive website about epilepsy. Set up by Greg Grunberg and friends, and is a really great illustration that epilepsy need not to be feared, and people who have the condition can lead normal lives as possible.