Showing posts with label Epilepsy Action. Show all posts
Showing posts with label Epilepsy Action. Show all posts

Friday, 22 May 2009

Memoirs of a Marathon - How could I have done it without you?

To the Cheshire girls in all their fake tanned glory
With streaked blond hair and make up awry
With “Daddy’s booked us supper at the Ivy!”
And champagne on ice you really should try me
To the men who ignored it and the boys who couldn’t help it
And the clitter and the clatter
Of the train full of chatter
As it rattled its way further and farther
Silence loomed and so died the laughter
To the back streets round Greenwich full of hope and ambition
Of the boasting and preening
Of the Vaseline and sun screening
For the shade of sweet Spanish Chestnut on the uphill walk
The hum of humanity and chastened talk

To the Conductors, the Guards, the Marshals and Scouts
For the banter and the cheers putting fear to rout
Of the queues for the loo and all that endless waiting
Last minute stretches and anticipating
For the news on the tannoy of the official start
Then the waiting again ‘til its time to depart
Slapped in Pen 9 right at the back
“Move over Darling, cut us some slack!”
Squashed by a donkey, squeezed by a pear
Isn’t that Superman just over there?
Scuffling, shuffling, retying laces
Hoping to find some more familiar faces
Then the realisation that the crowd is thinning
There’s the start line and our marathon is beginning.

To the boys and the men and the girls in the bushes
Giggles and laughter cannot spare your blushes
Caught short at the start I couldn’t help grinning
An army of backsides saluting the beginning
Past the chapels and churches
And kids on their perches
A sprinkling Holy Water to make you run quicker
Blessings from the Fathers, the Rector and Vicar
Past trumpeters and cheerleaders
And transvestite speeders
Clapping and calling
Hallooing and caterwauling
On up past the Barracks and down the far side
Feeling quite good now and into my stride

To the Rhino, The Nurse and good old Tobermory
Paddington, Rupert in all their fine glory
Panting and puffing and pushing on through
Each plodding resolutely one of the few
High fives and low fives
Things to make us re-vive
Madness, Survivor and Don’t Stop Me Now
I start to sweat and to mop my brow
Past pubs and clubs and backyard parties
Handed out sweeties and half melted smarties
Over pingers and bleepers
Are we speeders or creepers?
Now under dark bridges with fantastical drummers
The sky, now so blue, like the height of full summer

To the ones who ran in the memory of others
Of the brothers and sisters, of fathers and mothers
“Running for Emily” “Running for Dad”
“I’ll never forget you – I’ll make you glad”
The amputee soldiers ran nevertheless
The roar of the crowd was unceasing ceaseless
Willing them, urging them, forcing them on,
Their rights to be a hero, a conclusion forgone
Running for the animals, running for the kids,
Running for the blind and those on the skids
Water Aid, Arc, Epilepsy Action too
Age Concern, Scope and Dreams come true
To celebrities and showmen, to Pete and to Jordan
For keeping your cool: “Respect for you. Yo Man!”

To the ones who sprayed water on a baking hot day
Our bodies sang relief what more can I say?
The sun was relentless beat down on our heads
Our legs felt like iron and our feet like lead
Pain now set in and joints they were creaking
Our throats so dry we didn’t feel like speaking
Over Tower Bridge now we come face to face
With those who are running a much faster race
Our thoughts they turn blacker we’re only half way
So what does it matter if we walk part o’ the way?
Walking or slogging
And limp start jogging
Now we face demons of all our own making
To run or to stop: it’s our choice for the taking.

To the girl in the pink dress who called out my name
How much you did help me to rekindle the flame
Exhausted in body I could hardly reply
I gave you a thumbs up as I struggled on by
I started to dig deep down deeper than ever
To find in myself a reason whatever
Though tired and lonely and aching and more
I picked myself up from down on the floor
Now my legs started pumping
And my heart it was thumping
From a walk to a jog
To a constant hard slog
Each yard it got better and better and better
The girl in the pink dress: I’ll never forget her.

To the drink station volunteers and gallant first aiders
The homeowners, the publicans and East End traders
To the woman who offered the cheese and ham sarnies
You pitied us all and thought us all barmy
You chattered and nattered and cheered us along
“Keep going there luv the end’s now not long!”
To the singers and bands, the DJs and jocks
For Up Town Girls, Sex Bomb and heavy metal rock
How you kept us all going
Even when we were slowing
Chanting and clapping
Singing and rapping
Calling our names shouting for more
The roar of the crowd is hard to ignore

To the last half mile of this very long run
It’s been quite exhausting and well…really great fun!
Now there here just ahead of us rises Big Ben
Towering over the multitudes and the policemen
Cordoned and guarded we’re funnelled on through
Tamils on the left of us calling for their due
Tourists on the right of us cheering us on
“Move your self girl - get a move on!”
A runner on one knee
Calls will you marry me
The woman in the yellow dress
We all hope she said yes!
Now up past the Palace in glorious sunshine
And there just ahead of us is the finish line.

To my sponsors and their generosity
Because they know me or out of curiosity
It was done in just five hours and thirty-six
No cheating I promise and no tricks
Each step, each yard, each mile
I will remember all and smile
Now to the best bit of the day
To Caroline what can I say?
A bath was drawn, champagne was served
It was far more than I deserved
And so to family
And so to friends
I’ll thank you now as I thanked you then
I’ll thank you all again and again and again.

Saturday, 25 April 2009

The day before tomorrow...

Tomorrow I run 26.2 miles in the Flora London Marathon in aid of Epilepsy Action and I am scared. I am scared that I won't find the start. It all seems so horribly complicated and I am bound to be late. I am meant to meet up with some fellow Epilepsy Action runners by the Trucks at 9am but have a funny feeling there will be an awful lot of trucks and an awful lot of people. Hopefully in my gorgeous Epilepsy Action running vest, which is ever so slightly too tight for me and therefore strains over what I used to think as my not too full bosoms, I shouldn't be too hard to spot. I am also wearing The Boy's bright red baseball cap which sports the Red Dragon of Wales on it. I am sure I will look quite delightful. That is when I am not dashing off to the loo every five minutes.
Talking of loos I was given some instructions as to how to go to the loo when I registered. As a girl I have been advised to do this standing up using a Pee-Mate. The instructions are slightly awkward as they presume of course that all us girls will be wearing running pants/shorts etc with a zipper. I am sure we will all adapt but the idea that this will make it easier and the queues less long I fear will come to nothing. I also worry that I may land up running with a damp patch - joy!
I have done everything I can now to be fit enough and prepared so the rest they say is in the lap of the Gods - I do so hope they feel beneveloent!
Wish me luck!

Thursday, 26 March 2009

World Epilepsy Day - I keep repeating myself…

I keep repeating myself. No, I really mean it. I have to keep repeating myself for the benefit of The Boy. I sat with him at lunch and he blanked on me four times in 20 minutes.
It has actually become second nature to me that whenever I see him blank I wait until he regains consciousness and then repeat my last few orders. For it is usually when I have just given him a set of commands that he blanks.
Now of course, it could be that he suffers the same problem as most males in that as soon as a female starts to use officious language with words of more than two syllables then the male becomes temporarily unable to hear. I know my father suffers from sporadic deafness and it can be most debilitating for my mother.
But that is not the problem. The Boy has Absence Seizures, a form of Epilepsy known in the old days as Petit Mal. So what is it? Well it means he blanks or zones out for a short time every ten minutes or so and has no recollection of doing so when he regains consciousness. He doesn’t fit, or twitch in fact some motor responses continue such as walking even though he is totally unaware of his surroundings. You don’t always see it happening, it can be very fleeting and if you don’t know what you are looking for, well it is nigh on impossible to find.
So for a long time we didn’t realise that there was anything particularly wrong. He just seemed to be a bit of a daydreamer, a bit clumsy and well a bit slower than the other kids at school - although I might add far too quick and cheeky at home.
Because it is so difficult to pinpoint, Absence Seizures are frequently misdiagnosed not least because many children grow out of it naturally. It in no way affects his intelligence but it does affect concentration levels, and can, and does, cause havoc with learning. If you are only getting half the instruction because you zone out on the other half you can't really learn very well can you?
In so far as trying to understand what it is like for him I imagine it is like a record that suddenly jumps. It must jar and befuddle one though he just gets on with it. His answers are a bit well surreal to some questions but on the whole a stranger who did not know better would have no idea.
However, at a time when he should be beginning to relish new found freedoms such as going to the Village Shop by himself or riding his bicycle on the road he can’t because in those moments of unconsciousness he could just as easily step out in front of a car or swerve in the road.
What is really annoying is that apart from repeating myself there is nothing I can do and for any parent that is truly frustrating. However I can raise money for Epilepsy Action. This charity has been so helpful and so marvellous in supporting us that it felt churlish not to do something in return – so in a fit of altruism I signed up to run the FloraLondon Marathon this year
For those who would like to support my endeavours with a donation towards Epilepsy Action you can do it via the internet by visiting my Justgiving fundraising page http://www.justgiving.com/lizasmarathon

Tuesday, 27 January 2009

Friday Angels


I should of course have been doing this every Friday but nothing is ever simple in my life. So for those out there who have been my Angels and kindly supported my efforts to raise money for Epilepsy Action as I train for the Flora London Marathon - here's an excuse to Google yourself!!!

Cathrine Harrison - seriously good lass and very dedicated PR!
Jim Darrah - never mess with this man, a hero and great support!
Great Aunt Alice - come on would you quibble with a GREAT Aunt???
Rhiannon Spurgeon - this lass is in training for the Bath Half Marathon (Go for it girl!)
Mauro Marenghi - ad sales extrordinaire
Malory Davies - as close to God as they get ( well he IS my editor!)
Will & Anna-Liisa Gaze - Best Brunch in Suffolk!
Susan Lewis of NR Evans - Operational Support Manager of a seriously good logistics firm (which just happens to have a head office close to Carmarthen in Wales where my Nan used to live - see it's ever such a small world really!)
Peter & Sue James - a magical Godfather and pretty special person (and Sue too!)
Gert & Elizabeth Stern - too generous by half!
Charles Mesquita - well what can I say? He's my bestest mate

OK Money raised so far a whopping £414 only £4586 to go....and then of course I have to run as well. Ever onwards, ever upwards...

http://www.justgiving.com/lizasmarathon

Monday, 26 January 2009

Looking like something the cat sicked up…

When I next manage to go out running I am going to look like something the cat sicked up. And I will do this voluntarily. I will walk out of the house knowing exactly what I look like, which will be seen by my mother as a step in the right direction, as I have never been known to check what I look like before leaving the forgiving environs of my own home.
In fact I have never been known to check what I look like even within my own home, as for many years my dressing mirror was obscured by a huge pile of pictures waiting to be hung on the walls. It wasn’t until recently when the walls were ready for pictures to grace them that I remembered there was a looking glass in my dressing room. It came as quite a shock, I can tell you. I could not figure out who the slightly crazed apparition was before me, I couldn’t remember having a portrait of my Grandmother and then it dawned on me that I was looking at myself – a far cry from the image I had been carrying around in my mind all these years. That had been of a more youthful version, less grey, slightly firmer round the jaw, more defined. I’d like to say that when I finally brushed the dust off the mirror I was all I ever was, but reality, like bright mirrors, is harsh.
However, I digress, despite the changes wrought in me over the years, there are many who can verify that I don’t look like cat sick on a daily basis. No, the reason why I will be looking highly dubious, is that The Boy and The Littlest feel I need to be seen. I need to be violently seen or seen violently. To be honest anyone who does see me will attest to the violence of the apparition that will be me. I just hope I won’t be the cause too many accidents for that is the whole reason why the Boys are determined Mum will be seen.
They have just watched a video all about The Girl Who Didn't Dress Bright in the Dark part of the Government’s road safety campaign this winter and having worked out that they have plenty of bright stuff to be seen in it has dawned on them that their erstwhile parent goes out training for the Flora London Marathon dressed head to toe in black.
Now, the whole point of running attire is that it is black, or at least a dark colour, because that is what is the MOST flattering for the majority of us who run. Come off it, not all of us are built like whippets especially those who have only just taken up the call. I mean there have to be some perks as you abase yourself publicly on the open road. In fact I have taken to silently saluting the courage, chutzpah and well, just down right grit of all those ladies young and old I note jogging round Stowmarket and its environs – J-Lo eat your heart out the booty on these sisters is magnificent to behold!
Having raided my drawers, chests, cupboards, and an unending variety of boxes, bags and other interesting receptacles in the hunt for things eye wateringly bright the boys settled on an array of garments and accessories that when added together look like something the cat sicked up and I am going to have to wear it. The things I am doing to raise money for my charity Epilepsy Action I am beginning to feel are beyond the call of duty...
The violence of the ensemble would make even Vivienne Westwood pale. Upon my head is an old red cycling bandanna appliqued with day glo yellow pom poms left over from my Parent Trumping Christmas Card making blitz last year, this is teamed by an awe inspiring, and again day glo yellow, oversize jumper with 1980’s string vest top twist also in day glo yellow and adorned with silver stripes both front and back. My once pristine Nike trainers have been customised with pink sparkly pom poms tied to the laces. Around each cuff I have old bicycle lights, which I am told, most seriously, I will have to have switched to intermittent flash for the best protection. My worry is not for myself anymore but to other poor innocent road users…luckily though I have yet to recover sufficiently from the dreaded lurgy to launch myself upon an unwitting audience - take heed now they won't let me incarcerated for long however much I cough!

Tuesday, 13 January 2009

Is it Ok to PANIC?

At what point is it perfectly acceptable to panic? At the moment of realisation, at the dawning of comprehension or when it’s too late to do anything about it?
I am not quite sure where I am on that scale but there is a burgeoning sense of panic starting at the pit of my stomach and rising. It is causing a slight jittery feeling and making me feel, well frankly nauseous for much of the day and no it is NOT the Winter Sickness Bug – would that it were.
I am becoming concerned about the fact that I have committed myself to run in The Flora London Marathon and my training seems to be going backwards. When I started I was able to bumble along quite happily running 6 miles in an hour but despite training – throughout Christmas – I have got steadily slower. In fact if I continue this way I will only just be finishing when they start next years!
I try to get the thought out of my mind but like all semi-apocalyptic contemplation it won’t go away. It manifests itself in my dreams, interrupting traditional nightmares from being chased by unspecified horror to the realisation that the horror is the least of my worries and the problem is I will never get any faster and said horror shoots past leaving me somewhat deflated in it’s wake.
The thought stalks my day, turning the innocent school run into a potential half marathon circuit if only I weren’t in my car; my coffee break into a test run of trying to drink and keep moving at the same time - a feat I am assured is easier to do when the liquid you are drinking isn’t scalding hot.
Good grief even the washing is turning into a marathon but that’s possibly because it’s now on epic proportions as I was too lazy to do any over the holiday and now we’ve run out of sheets, towels and other minor necessities such as school uniform, pants and socks.
I suspect that my worries are unfounded or maybe even that I am not actually focused on the things where I should have concern such as the fact that I promised to raise £5,000 for Epilepsy Action as part of the marathon ordeal.
Perhaps the real issue of the day is fact that I have yet to start doing my tax return…excuse me I think I need to PANIC!!!

Tuesday, 30 September 2008

Bouncing off the ceiling

I’ve been bouncing on the ceiling – not necessarily what most people would have thought I was doing following an appointment at Addenbrookes with The Boy – but what I have done nevertheless.
It’s been one of those weeks – gone in a blur.
I can’t believe it’s been only seven days since Dear Charlie and I argued our way into Addenbrookes in Cambridge and took The Boy to see the specialist about his blanking/absence seizures (Petit Mal)
The Boy had a great time on the Super Mario giggling and laughing for most of the time -infectious little scamp. Unfortunately the same could not be said for me. I was grilled. I was rather taken aback and felt very small and stupid – I actually admitted to it. I blame it on the specialist’s bedside manner that got me that had me blurting out truths I thought I had hidden from the whole world – I am an unobservant mother.
It was just like those dreams you have when you are happily doing something usually in a school/office scenario when you suddenly realise you are stark bullock naked – it felt just like that: exposed and rather chilly.
Of course the specialist was just doing his job and getting the facts. Absence Seizures are tricky little things and of course The Boy’s ones would be atypical wouldn’t they? I felt I was being asked to justify why I was having the appointment. First I was told that what I described about the blanking was wrong, then the history was incomplete, then that teachers had a tendency to blame lack of attention in class on absence seizures and was I sure.
My brain always has a problem when too much information is heading my way especially when it seems to be coming across in an aggressive manner. My tongue sort of curled up and any connection between it and my brain was lost in translation and I sort of stumbled out my answers feeling like a total idiot.
In a nutshell The Boy zones out for a few seconds frequently during the day. You can’t snap him out of it by shouting at him – he just does not hear and when he comes back he usually looks at you as if you are quite bonkers as if to say: “Why on earth are you calling my name in a middle of a conversation?”
Usually he continues where he left off, sometimes in mid sentence. Other times he looks quizzically at you for guidance as to what he was doing or talking about.
I’ve seen him blank riding his bicycle and going right over the edge of our deck without noticing. That meant he dropped some 2ft to the ground. It was bit of a shock I can tell you and required lots and lots of cuddles. Both he and bike were fine thank God. But it certainly put me on alert as he could quite as easily tried to go across a road in front of a car!
For a long time I thought it was because he was tired, or that it was to do with growth spurts, as I would only notice them occasionally at supper time or if we were talking. Since the longest is only five seconds and the shorter ones merely a heartbeat I suppose it was amazing anyone picked them up at all.
It was picked up in Nursery when he was just four but didn’t get noted in his Reception year despite me asking for it to be monitored. His form teacher wasn’t exactly concentrating and I have yet to get to the bottom of that one – suffice to say I will be having a written explanation from the school for the specialist as I was definitely noticing the absences at the time but putting the symptoms down to tiredness at the end of a school day and the ones in the morning to having to get up too early!
It was his Year One form teacher who brought it up with me at the beginning of this term; she’d seen something similar before in a young boy, which turned out to be Absence Seizures/Petit Mal – I was so grateful that she’d noticed and that it wasn’t just me. But I also felt so completely stupid for not going with my gut feeling – I knew something was wrong. Perhaps I was too scared to find out.
So that left me in a small room being bollocked – well not exactly, it just felt like it.
Luckily I was informed that the specialist always kept an open mind and in the way that spoke volumes for similar treatment for weeks to come we were whisked into making an appointment for an EEG.
Which is where The Boy and I have been this morning but still doesn’t tell you why I’ve been bouncing off the ceiling.
The Boy was brilliant and liked the idea that he would have wax in his hair: “Just like a rock star!” he says to me.
He is lying on a trolley bed propped up and both neurophysiology technicians are attaching wires to his head. They chatter to him and he to they in a non-stop sort of way pointing out the pictures in the room, the panic button, the lights, and all sorts. They talk about his school and his mates and what he likes to do.
Then he’s asked to shut and open his eyes, to look at a flashing light and to blow on a windmill to make it spin.
I notice he blanks a few times during this and am glad that the whole session is being recorded – at least there will be proof now. Then suddenly he flops eyes glazed and it’s not a few seconds this time it seems to go on for ages but I’m sure it was only really about 10 seconds. My heart leaps to my mouth and I make a move towards him to gather him up, to protect him. Neither technician seems worried and The Boy perks up again unbothered. It takes a while for my heart to stop racing.
He spends ages choosing his badge at the end of the session and then we sneak a hot chocolate and brownies in the canteen before returning to normality.
His return to school just before lunch is worthy of the rock star he wanted to be earlier. There are a babble of questions and suitable gasps at the answers. I wave him goodbye and return home to work.
There are a lot of e-mails and as I go through them I come across a name I don’t recognise. I open it and there it is – we’d like you to join our team to run in the Flora London Marathon 2009….I’m bouncing off the ceiling with excitement – this is like: Hey WOW!!!!! Now I can do something – I’m going to be raising money for Epilepsy Action

Go on you know you want to...

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