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.

Spilt Tomatoes

Have you ever had one of those days when you put on a clean top and by the afternoon, you go to the toilet, look in mirror and aaaaw bloody hell, half your lunch is down that nice clean top. Yes you've guessed it, that's what happened to me today. I dressed in a shirt that was nice enough to go out in tonight, went to the loo after lunch and saw the tomato stains from my pasta salad had run half way down my boobs. Of course wanting to look perfect, I grabbed a cloth from the sink and started rub desperately.......


I gave up quickly however, thinking 'what the heck, we are only going to the cinema after all.' And I was using up valuable energy that I could be using to rest and get rid of this bugger of a migraine.....yeah, I've still got it, I think this one I'm just gonna have to work through, because the usual tricks haven't worked. But I've had one of these a week for the past three weeks now and they are seriously starting to piss me off.

The only problem is that they've usually a sign that something bigger will happen. Mummy often says, don't think about it, it won't happen. But my gut instinct is usually always right.

So anyway, frustratingly for the third day running I haven't managed to do any more work on my book. I had this virus you see , so was in bed on Monday and Tuesday, and had been fitting for weeks before then, a sign then that the bug was on its way. Oh and I've just have a period (sorry guys). Bugs, virus's colds periods, stress and emotion, they're the biggest killers. They'll fuck my head up completely.

Will let you know what Robin Hood is like....there's a story there but I'll tell you that tomorrow.

Nicki

Tingles and Migraine Part One Wednesday evening 19th May

5.30pm it started. That vague sensation. Familiar to me now, ten years ago I wouldn't have been able pinpoint it. But now a 30 something, I've learnt more about myself and that vague sensation, well, it's become more prominent, more frequent. Right now (8.20pm) it feels like an infusion of poison. Millions of daddy longlegs running up and down my right arm. That's what the tingles are like.

They make me edgy and unrelaxed. If they are really bad I'll 'circle.' It's a running joke in the family now, because I can't sit down and I get in people's way - spacial awareness is just not my 'thing.' But I'm learning, for instance I know when I've dribbled all over someone, I've just got that little bit too close....

The prolific Daddy longlegs are running down my leg now. I'm glad, glad that they're not tarantulas. Thick hairy legs are more intense and I'll have to sit down and rub my arms and legs. Sometimes I rock back and forth. I try not to do any of this in public, afraid that I'll be taken away by men in white coats.

Little things have come and gone this evening with the Daddy longlegs, I was on the phone to a close friend but oh I said something wrong, and then even worse, blurted out some news at a completely inapprpriate moment, it was a bit like taurettes (have I spelt that right, haven't got a dictonary to hand) syndrome. So I got a little bit paranoid, a little bit too worried about it, I started stuttering....well you get my drift.

But the worst thing that at the moment is the migraine. It started, with a bird pecking gently at my temple. Now it feels like a brick been crushed on it and I'm feeling so sick that eventually, my head will be in the toiet bowl -unless I get to bed with some ice and some painkillers first

More tomorrow
Nicki

Why Mind Blowing?

Yes I can hear you ask exactly that question right now. Why Mind Blowing? Mind blowing are two words used to describe something exciting and thrilling like a bunji jump which I haven't done and couldn't.....or the shot over ride in New Zealand which was awesome and a sky dive which I'm still waiting to attempt.....

I wish I could tell you it has everything to with them and nothing to with the subject I'm about to write about, but that would be one big fat lie. Huge. Massive. That's how Julie Robert's said it in Pretty Woman and she'd be the person I'd ask to play me in film of my life if my book ever got published and made into a film.

So why's your story so important? I can hear you asking as you read this. Well that's where the mind blowing part comes in. I have cerebal palsy (right hemiplegia) and epilepsy. The epilepsy is a bugger ie mind blowing because it generally means my mind, brain, head, skull, no sorry that's wrong your skull only protects your head and in my case doesn't do a very good job of that.... likes to play silly tricks most days, leaving me strained, exhausted but most of all terrified. Every seizure blows your mind - literally. It takes away your ability to do the stuff you want to do.

My Grandma always said I'd write. I never believed her, and I never ever believed I'd write about my life. It wasn't until my gorgeous, supportive stepdad came on the scene and encouraged me to write about what I'd been through that I started to think about it. Then when I looked into the market, I saw that there was a need for a book on epilepsy by an epileptic - there were medical books on how to cope but none on what it's actually like to live with it, so there was a niche there.

So far, with a year, 18 months out, it's taken me 5 years. I'm currently 'editing' the 2nd draft - which I absolutely despise, I wish you could write the damn thing and poof! it's ready to send to a publisher, but no, it has to be has to be as perfect as it can be.

And over the last number of years I've realised every good day is a blessing, every bad day is hell, if you don't laugh you cry and you absolutely have to drink while you're cooking.......

And so dear readers, I write in the style of Charlotte Bronte, hoping to be picked up by a literary agent who thinks my first entry is the most wonderful piece she's ever read and wants me send me her my book straight away.......well that would be the ideal scenario but lets be realistic....it's not going to happen. So instead I'm going to make you a promise - this blog is the mind blowing diary of an epileptic, I will be downright honest on my bad days, positive and funny on those good days. For those of you who are interested, I hope it will make intriguing reading.

NB For those of you who have just started reading this blog it was initially called 'It's Mindblowinging' hence the title of this post.