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.

M.I.LK. (Moments of Intimacy, Laughter and Kinship)

Over the last month I've been thinking a lot about friendship, how it makes you feel, what it means, whether it's good to have a lot of friends, whether it's quality not quantity and how far you should before you give up on a friendship that's going nowhere. Some of you may be thinking what's the fuss all about? A friend's a friend after all, but, although I don't know it, somewhere, there maybe some of you that are saying 'no a friend is much more than that.

When I was a kid, I was desperate for lots of friends. I saw girls at school chattering and yapping away nine to the dozen in big groups about what they were doing at the weekend, the new clothes they were going to buy, their Dad's new car. When I look back now it was all very cliquey, but at the time, I was desperate to be in one of those clique's. Instead, I changed schools various times and got kicked, beaten, laughed at and called derogatorory names across the playing fields. And so I think this desperation for friendsip taught me a great lesson, take good care of the friends you have, let them flourish and they will grow and survive. As I was soon to learn though that meant trying to also survive the changes that both you and your friends endured. But we did endure them. One of the biggest tests for me was to live with one of my friends I'd made at primary school while was studying in London. We made it though despite lots of ups and downs on both parts which showed the strength of our friendship

There were another two friends that made up our foursome at school, I lost contact with them until later and one has become one my rock and the other my duvet. You might laugh that I call him but it's because that's how he makes me feel when I see him, all warm and fuzzy inside exactly like the feeling of being wrapped up in a warm duvet on a cold winter's night. And the other one, he's always been there for me through my rough times.

I'm very lucky to have these three in my life, I know they will always be there for me, and despite hectic family lifestyles, there is always a whisper in my ear and a gentle kiss to say, ' you will always call if you need us won't you?' and I know that despite living 20 miles apart, if I had a bad time it would be a short distance to my home in their eyes.

But I've not always been so lucky. As I found out through school and university, it's not easy trying to find friends, with epilepsy and cerebral palsy as a double entendre even if it does only affect my right hand and means I have a slight gait. At university I started to talk about my epilepsy quite openly, how it affected me, how it felt and telling the girls what to do if I had a complex partial sezure. Their reaction, no kindness, compassion or understanding. Instead they tried false friendship and being as young as I was I mistakenly assumed it was genuine. And it wasn't until my third year when I met a girl, let's call her Lisa, for arguments sake. We clicked the moment we met outside the door of our new flat in halls, I remember it so well. And as we started to live together we became incredibly close friends. I did things with her that I'd never done with any of the other girls that I'd met and it made me realise how shallow they'd all been. Lisa took me at more than face value, she looked through the disability and the epilepsy and saw the real me, the genuine, down to earth me, and the fun me.

And we are still in touch. As you get older life gets busier, you don't get the time to speak to you friends - I haven't spoken to Julie for ages - but you know one of the signs of a true friendship is when you pick up the phone and nothing's changed and luckily it's always like that with Lisa and Julie. And even if we haven't seen each other for a couple of years or even if it stretched to four or five we'd always be the same. Friendships like that are a marvelous thing and something to be treasured for life

I've spent a fair amount of time over this past month contemplating what do when friends let you down. People who are only superficial friends and stupidly, but you don't realse it to start with and very stupidly you take them as not and so you're the only one who ends up getting hurt. I don't know about you, but when a friendship starts to crumble and collapse (and not because of an argument because believe me, I know those happen!), I start on a rollercoaster ride of emotions. I want to know what happened, where it went wrong, was it something I did wrong? Generally I find it very hard to let go and for weeks thoughts will tumble around in my head until eventually I realise I'm driving myself mad and tell myself it's them not me. If they'd wanted to be friends with me they'd more effort in the first place because I'm not a bad person. Or at least I'm not aware of being a bad person...people might have other ideas, you never know!!! The thing is with me, because friendship is so important to me, when I meet someone I like, whether it be male or female, I think, yes they'd be nice to have in my life so I start making the effort, but I've started to learn, only give them a certain amount of chances.....that way it'll stop you getting hurt.

And I know that I'm lucky. I've got the true friends who take me for who I am warts and all. That's important to someone with stigma such as epilepsy, although it shouldn't be. But as Thomas Carlyle once said, and I have learnt through the years that life is a succession of lessons which need to lived to be understood. In relation to epilepsy these lessons have been important especially in relation to friendship. The first is that because there is STILL not enough awareness of the condition and because of that when people who you assume care for you see you have a fit for the first time and completely back away, it's a complete shock. And there you are having to hold your head afterwards as if nothing's happened, and you carry on as normal. Sometimes it's the hardest thing in the world to do, you need friends who understand that. But as another very famous person Anne Keller said, never bend your head. Always hold it high. Look the world right in the eye. But it was my Mummy who taught me to do that no one else and at a very early age too.

So I have concluded, that it is definitely quality not quanity that it is most important in friendship for they make me feel loved and valued. I have a few more quality friends than I have mentioned in this blog but I think you'd get a bit bored if I mentioned all of them!! I don't know if any of you know M.I.L.K. (Moments of Intimacy, Laughter and Kinship) that are sold in shops now. I buy a lot of them for you could call me a cardaholic. But for those of you that don't know them they are printed with photograph and relevant quote with it. And one of my favourites is

Many people will walk in and out of you life

but only true friends

will make footprints on your heart

Quite appropriate don't you think?

Freaky Friday

Freaky Friday - a 2003 film staring Jamie Lee Curtis and Lindsay Lohan. Somehow in the course of the film they switch places to walk a mile in each other's shoes. Something that I've always, well, not wished to do exactly, but have certainly always wondered, what it would be like to have a couple of days with no head traumas and be able to use both hands.

But it was never meant to be so I just make the best of my situation, which these days to me, being as self reliant as I can, travelling everywhere independently so that I can go and stay with family friends - for instance I've just been to Leicester to see my godmother for a couple of days. The family will help out as much as they can to get me to the train station or a friends house if they are going that way but if not then I will make other arrangements.

And I love travelling overseas. So far I have been to New Zealand and Sydney on my own but there are lots more places to see....as they say, the world is your oyster.....

So this is me, I'm positive, I'm happy. I don't let this blasted thing, this thing where brain cells clash and starting fighting as if they have octopus tentacles. No I don't let it get in the way. I get up in the morning and never think 'oh I can't do anything today because I'm going to have a fit.' If I did that I wouldn't be able to do anything. People have asked me in the past 'are you ok to go out today?' My reply 'Of course.' I don't think about it, apart from the fact that I carry the necassary drugs around if needed.

Only I have realised recently that I have a 'Freaky Friday' of my own to contend with. I have good weeks, when I don't have any seizures (those are blessings!), or just have simple partial seizures which are so minor that I've found the strength of mind to ignore them. Then I have the really bad weeks, where lots of other things go on apart from the seizures that I end up being sedated up to hilt every day......but this isn't about them.

So you're probrably thinking that I'm going a bit mad by now. Freaky Friday, what's she going on about? Well, Friday is the last day of the week right? And if my brain's behaved, I've had a week of being busy, not thinking about head traumas, even if sometimes they might be there. And then suddenly I'll wake up on Friday and Bang! I'll have an ice, there'll be tingles or a migraine or tension headache.....the list goes on but often by lunchtime I'll be really frustated because it's stopped me dead in my tracks. It's almost as if my brain has had a complete shutdown, just like a computer. And they often say that don't they? That your brain works like a computer. So just like a computer that has been working all day and is screaming 'I'm over-heating!' my brain screams 'I've had enough! I can't work anymore!

So there it is, my Freaky Friday. Often it makes me cry with frustration, but usually I try and get through it by dancing and laughing.....it's the best medicine.

Would you say 'Actually I'm about to have a Seizure?'

June has been a busy month, full social engagements and busyness. First there was my birthday, which was a lovely day. Breakfast and presents on the terrace with Mummy and Daddy in the early morning sun. Mummy had cooked what I'd asked for, the Sydney breakfast that I loved so much, scrambled eggs, smoked salmon, roast tomatoes and avocado. Delicious. Then we went a garden centre for a little pottering, then back home for a shower and change and then on to my sister Ant's for birthday cake and a big surprise, one of my stepsisters, Amanda, turned up. That's when I found out we were going down to Brighton where another one of my sister's, Clarry lived for a girlie night. It was a lovely night, we ended up at Jamie's resturaunt, and then on to a cocktail bar for a couple to end the night off. Clarry presented me with a concoction and all the she told me was that 'it has gin it.' God forbid what else.....but it was very nice and sweet.

The next week was hectic, a couple of days working on my redraft, which is how it seems to be working at the moment, fitting in a couple of days here and there, which is really frustrating, but I have to get it right, otherwise it won't be published. The rest of the week was dedicated to buying presents for my niece Fia's birthday, the 14th. She's dead into Hello Kitty right now, only I'd missed out on buying all the accessorises and merchandise, so instead I made up a lucky dip bag with the blingest pair of flip flops that I could find in Accesorize. I also had to buy Amanda her birthday present as it was her birthday the same day.....presents, presents, presents, that's all I seemed to be doing that week....But by Saturday I was able to calm down a bit at Fia's party, it was a more chilled affair than the previous year, despite the face painting, the games and the rabbits that were hopping around the garden with the labrador and lurcher not taking any notice.....you wouldn't wonder why other people call our family barking.......

And the following week....oh yes believe me there's more.....I ended up shopping again. This time for food. Once it was done, I start chopping, mixing and grating and by the end of lunchtime on Monday I had bowls of invisible slices of celery, half inch cuts of spring onions and a mountiain of grated cheese. What were all these for you ask? Well I was attempting to make cheeseballs for my housewarming on the following Saturday the 19th. But by the middle of the week everything had gone completely tits up because both mixtures ended up being to runny to form into balls. So instead we made one into a quiche, and the blue cheese one into a dip which actually went down like a storm......

So you could say that I've been on the go all month.... but in the midst of all the goings on, I had a head trauma that shook me up for a couple of days. As far as I can remember, it was the week before Fia's party and I had a full 'to do' list on my IPhone. I had headed out to complete the first item on my list, I needed to send a birthday card to James in Australia, he was going to be four. So there I am standing in the queue in the post office when I suddenly feel a complex partial seizure come on. I have simple partial seizures, complex partial seizures and secondary generalised. All in all it doesn't matter to me, the complex partial, whether level one or two have always been 'ices' or - even 'ice in the bottoms' that was when I was around three to five - Doctors used to ask me why I called my attacks 'ice in the bottoms' and I had no idea. So they then asked me what it felt like. I always use to tell them that it felt like a piercing hot knife travelling up my back and then disolving into a very frightening sensation. They looked at me even more strangely as you can imagine!

Anyway I digress, this ice was a strong'n for a complex partial it would have rated no 2, which on the protocol that I carry round in my bag states that 'this is a stronger version of a simple partial (as described above) when Nick has to sit down and cover both ears 'to block out the fear, block out everything.' This is actually a very good explaination because when I have a strong ice, it feels like the whole world is going to crash down on me and it's my way of stopping it. But as I got older I stopped doing it because when I sat down on the street, I'd get 'what's wrong?' 'Are you ok?' I wouldn't be able to answer, because I needed all the concentration I could muster to drive the ice away. In the end I found it difficult and embarrasing and eventually I stopped, saying to myself that it's mind over matter and I could train my brain to cope with the strong ices.

So there I am in the middle of the post office queue, my face completely frozen, my ipod turned off as I'm talking to the ice whispering to myself 'piss off,' making sure nobody can hear me. This gradually progressed to 'fuck off' as the fear became a vision of a Boering 747 landing on me, and squashing me into pieces, until I couldn't breath. Only then did the ice pass but I was left with seriously strong tingles. And then all of a sudden it wasn't just those daddy longlegs and tarantulas that were crawling along my right side. They'd called in the big enforments. Elephants were stomping around, trying push me over. I got really scared then, because knew I it was time to sit down incase I fell, but I was in the middle of the queue stuck between an old age pensioner who was the size of my great aunte Ro Ro (which is small) and a mother with two young children who were swinging between the rails like baby chimpanzees. There was no way out, so I had to hang on to the rail feeling elephant hooves punching my calf, hoping that my knee would buckle under. It shook with mighty force, I'll give you that but I wouldn't let them win. Five minutes later I couldn't feel my right side at all and my vision in my right eye was in a very weird state. I could see, but it was if it was being blocked. This must sound bizarre, and it's only something you can experience, nothing can explain how it feels.

Somehow, and I really don't know how, I managed to get to the front of the queue and then in front of a post office window. As quickly I could I asked the woman what I needed, breathing in, one, two, three, four, out, two, three, four, trying to keep myself calm, thinking to myself please please God don't let me keel over now.

Luckily I just about made it. As soon as I walked out of the post office I sat down. It wasn't the best place to sit, just by the letterboxes in the wall, lots of people stand and smoke there and so I was aware that I might be sitting on fag butts which wasn't a very pleasant thought, but needs must at this stage I had no other choice. I searched my bag for my phone, dial Mummy's office number....we have a brief conversation about whether I'm going to carry on or not. I want to carry on, she wants me to stay sitting down. It's called a battle of wills, a determined girl and a protective Mummy....but to honest I wouldn't have it any other way. The thought of having a Mummy that didn't care was just horrendous. Anyway to cut a long story short, I take 20mg diazapam and wait to see if I am able to. But after five minutes I realise it is impossible, the jungle that had possessed me, was shoving me down. But knowing that I'd done something to make them retreat, made me think that I could walk the five minutes home. So pushing myself up, I started walking, even managing to get to the other side of road safely. Once there, I scrambled around for my phone, phoned saying that I was on my way home. 'What do you think your doing?' she said, 'you need to sit down, where are you?' I told her I was outside the Adult Education Centre. 'Right stay there. Ant'll be down to be pick you up in five minutes."

So I slipped down the wall into yet another sitting position, this time looking left and right, not knowing which direction Ant's car was going to come from. It felt like I was there for ages. And then something happened that I wasn't expecting. A woman with blonde hair, wearing a green cardigan asked if I was ok. What was funny though, was she didn't stop, she sort of went rushing by, and turned her head backwards and asked the question.

I wonder if she'd have stopped, if I'd said no and told her I was about to have a fit. I'm sure that there are a lot more nice people than we give the country credit for, I remember feeling so lucky the day I had my worst fit because a friend of Ant's saw me having a problem in the middle Embankment tube station and stayed with me all the way through. God was smiling on me that day, I can tell you....

The thing is, those times don't happen very often, maybe it's because when I grew up the perception of having epilepsy was seen as a stigma....people didn't understand it, didn't want to understand it, epilepitics were best seen and not heard....that's how it felt when I was at school. It was like living in the dark ages when epileptics were believed to be insane and locked up in nuthouses, you just need to read the history books to find evidence of it.

So it's all down to embarrasement. But is it the embarrasement of the person asking because they don't know what to do, or they're afraid that we're actually just drunks hanging out on the street. Or is it the embarrassement of the epileptic? I know in my case, it's my own embarrassement, because of the perception of how I was brought up and that I have to live with the stigma.

Interesting. It's something I've never thought about before.

Terrible Palsy

Terrible Palsy......if a ten year old said that to you when you were trying to explain to his friend about having cerebral palsy, would you find it upsetting or would find it funny?

The honest answer : the emotional me found it flipant and hurtful, I rose to bait when my nephew said it. You can't play airball, he said because you have to throw the ball through a hole that's as small as the hole in Mummy's headrest....you just try me I replied....well you can't do this and you can't do that....and I had the same answer....you just try me, I bet I can do it.

It's pretty amazing really how I've adapted over the years even though I do say it myself. But it hasn't been an easy journey. It's been a long and arduous task to find ways to do every day things so that I could be an independent person. Things people take for granted like tying shoelaces, that was one of my biggest triumphs. I was 17. 17! When I was young and velcro was 'so' untrendy other kids could tie their shoelaces at eight or nine....I was still fighting with shirt buttons and screaming in the process....not a very nice experience for Mummy.

And when I started to enjoy cooking when I first lived on my own...experimenting with different contraptions, onion slicers, tomato slicers, the list went on. I cooked differently, fillet recipes turned into casseroles as I cut the meat before cooking it.

These are just examples and that I now don't even think about it, I get on with my life, just do things differently, although nobody would really notice. And if austen were a fly on the wall he'd see that, but it's difficult job to make kids understand so that they show kindness, sensitivety and compassion.

Terrible Palsy.......I tried to rationalise it, kids say what they mean so austen must have been thinking that it must have been terrible to have cerebral palsy. It's not terrible, it's not even different, because everyone is different whether it's a bald patch like Bart Simpson, a funny voice like Bo Selecta or big ears like old Prince Charley.

And I may not be able to catch a ball brilliantly, but I play a mean game of table tennis.....as regional champion at school, and I bet he didn't know that :-)

Inside there's a scream waiting to come out

Yes it's true, very often there is a scream waiting to come out, or a feeling that I just want bang my head against a wall until I've got a gash big enough for blood to spill, oozing down my face in small rivers. I wonder sometimes whether I'd rather have that sort of pain than the constant pressure of bricks pressing against my temple.

You might have guessed by now that I've not had a very good couple of days. Friday 21st May it was 23 degrees and I was still in bed at 12 noon. Yup, even though you just wouldn't believe it I was STILL trying to get rid of that bastard of a migraine. After spending the previous evening trying to ignore it I sat in the cinema where I'd had my first date and concentrated on watching Robin Hood, but every time the arrows aimed and shot, my head felt the pain when they landed killing enemy.

So the by time I woke up the next morning and still felt the pain, I was feeling totally deflated and exhausted. I came downstairs and wrapped an iceblock in a tea towel, went straight back to bed and fell asleep. And when I next woke up it was 23 degrees and 12 noon....I'd missed the half of a a rare beautiful summers day. Slowly I made my may to kitchen, gently, trying to keep my head still so that I could make my first cuppa of the day. But in the process I got a knock on the door and the offer of a cup from my new neighbour who didn't seemed to mind that I was still in my pj's. So I went over to his house and sat with talking to his family and children, coooing over his new baby girl, who is absolutely gorgeous..... and I felt so chilled.....that just for a while I managed to forget about my headache....although I did worry a little that I was stinking to high heaven. They didn't seem to mind though and I spent a couple of relaxing hours there.

One month later 30th June

Due to the circumstances beyond my control, I was not able to finish this blog - but you get the picture of what a general week can be like sometimes. They describe epilepsy as being electric storms in the brain.....and it is excactly that. One big huge fuck off thunderstorm like the ones in Sydney that I experienced at christmas when the lightening cracked through the sky and you think it was going to open and swallow you whole.