Chapter 10 Off Topic and so Sensei tive

The Buttercup

As grasses trace a breeze across the meadow

With transient beauty, a buttercup nods approval

Shall we mourn its passing?

…….Or remember its radiant impermanence

No person built a heaven for this flower

No person imprisoned it, with their false expectations

……Or exaltations

Not born in the image of a vain glorious creator

No dusty texts foretelling its arrival,

…….Or departure

So should we love it less?

…….Or more?

Chapter 9 Base Camp

Having got through my first day back teaching, and delivered two good lessons I am feeling very happy with myself and the world.
I met with the inestimable Doctor Armstrong again on Thursday and received my steroids.
This is the treatment to tackle the condition at a fundamental level, rather than deal with the symptoms.
I am taking the steroids on alternate days and my dose is ramped up from an initial 10mg (2 pills) to a hefty 60mg (12pills) these together with drugs that deal with the side effects mean I shall soon be using a wheelbarrow to visit the pharmacy! This together with my predicted steroid 'moon' face should present an unusual sight.
I'm trying to consider a 'look' that will compliment my moon face, perhaps the final days of Elvis?

Some satin flares and heavy on the sparkles. Or Kim Jong -un (north Korean leader keep up) he carries a moon face with style and panache and is also more 'now'.

Yes that's it! SOLD to the man in the grey buttoned up jacket.
Is it just me or is he really a Pikey?

Thank providence (I have already covered God) I live in a developed Western Country, with what we all consider our birthright and frequently criticize the NHS!

The marvelous Doctor Armstrong refuses compliments in a classically English way "any neurologist would have done the same thing" etc.  The fact remains I am inordinately grateful to this one, because any neurologist didn't help me this one did. I have to spare his blushes now however as I have given him a link to this blog and he may just read it!

I have retained this feeling of euphoria that swept over me on Wednesday although it is now at a level I can manage. (I don't feel the need to stop people in the street and hug them explaining how lucky we all are to be alive).
This is apparently not a side effect of the drugs.... this means it is simply the relief at having my life back.

Buddhists apparently work on something they call 'mindfulness' I read that someone with a broken leg might think that they would be truly happy if they didn't have a broken leg.
When returned to health however they quickly forget their leg and are not in the happy state of mind that they anticipated.
Mindfulness is apparently a state where someone can be happy and aware of the positive aspects of life at all times. I'll have two bags of that please!

The more I consider this, the more interested I am in finding out more about Buddhism.
I find myself being drawn along the path my dear dad followed and whilst I understand that this is a journey
made by the individual this is comforting for me.
There is a Zen Buddhism centre in Reading that have introductory meetings on the first Tuesday of each month.

Pass me my saffron robe please......... (he's lost the plot this time).

Chapter 8 (8 already!)

Dear whoever reads this stuff, so much changed so fast from my drooping eyelid 2 short weeks ago through 2 drooping eyelids to speech impediment and beyond.....
As I sit bathed in the white light of my puter monitor at nearly 2am where do I start?
As recently as this morning  I was convinced that I should start writing my will, (always the drama queen)
I am now sitting here contemplating the whirlwind of the last 12 hours...
At around 1pm this afternoon I took the first 30mg tablet of the 'sticking plaster' part of my treatment offered yesterday by the hero Doctor Armstrong.
He had dampened any expectation I had of these tablets that were to boost the amount of chemical produced by my nerves at the neuromuscular junction.
The intention was that this overdose of acetycholine would give the receptors (unaffected by the masking effect of my antibodies) a fighting chance of passing the signals onto my muscles.

Sitting and waiting and waiting and.... is it my imagination or do I feel better? mmmmm left eyelid seems to have stopped drooping.... mmmm I can eat toast without difficulty..... can I talk without the comedy impediment?
I tried talking to myself and it seemed ok i was scared to admit it but I'M FINE... I'M FINE AND DANDY AND FIXED!!!

I immediately phoned everyone I could think of carried by a wave,   a wave of euphoria,
If this is the 'sticking plaster' part of my treatment the something to be getting on with bit, then what would the serious bit enable me to do? Jump tall buildings? Travel faster than a speeding bullet? Throw people by just looking in their direction?

BRING IT ON DEAR MARVELOUS DOCTOR ARMSTRONG BRING IT ON.

I am so looking forward to getting back to my schools next week, It is an overused expression but I really do  feel I am waking from a bad dream.


LOVE LOVE LOVE (and a free world)

Chapter 7 (tick tock)

I returned from Tesco's Pharmacy with treasure! (insert Pirate laugh, or maybe Gollumesqe giggle, you know the old "my presssssious" routine), PYRIDOSTIGMINE the first of my drugs.

For the first time in my life I read the leaflet carefully, all of the possible side effects combined will be a holiday if this gets rid of my double vision and speech impediment.
Lining up my first 60mg tablet up in my pink (defy stereotypes) pill cutter and .... smash it to dust! 2 more attempts with the same results, then, using a kitchen knife I succeeded at my first attempt, neatly dividing a pill into two 30mg pieces.
My initial dose is 30mg 3 times a day, they suggest that it will take between 30 minutes and an hour to kick in and should last about 4 hours.
If this works it should allow me to get back to my classes, and that gets more important with every passing day.
The Holme Grange possibility gnaws at me as I just discovered that yet another of my warriors might be heading there in September (if I told you who I would have to kill you, which frankly would require more thought now than a couple of weeks ago). If this treatment kicks in quickly I may be able to approach the school before the end of term,  although Doctor Armstrong described this as 'the sticking plaster' part of my treatment with the steroids that follow next (hopefully tomorrow) being the treatment that deals with this at a more fundamental level.


So as the candle sputters and the glowing embers light my ravaged features...... tick tock.... I sit back like some latter day Dr Jekyl waiting for the Pyridostigme to do it's dark work,

Except of course its a bright sunny afternoon, daytime tv is in full tourettes mode screaming on about PPI have you been misold? Car Insurance anyone? How about a payday loan? Some kind of loser fest I can feel it drawing me in!
It scares me to think I might descend to the point where I become part of their target audience,

I want my job back and I want it now.

ps Thank you, if you are one of the people that have sent me your support and encouragement it really has helped keep me focused on getting through this and has given me a real sense of purpose in my job.
It is fantastic to realise how much judo means to my children.
I vow to redouble my efforts to help their judo development as soon as I'm back.

pps Just in case you think I'm getting a bit hippy with this and losing that natural savagery of mine.... if you are one of the people who are too embarrassed to get in touch remember its not catching, and at some point I will hunt you down like dawgs and say "Hello how are you"?
If this is embarrassing how is that going to feel?

 mmmm  feeling better is it the drugs or the fighting talk?

NO! I REALLY AM FEELING BETTER!!

bijou blogette 5a

Sitting in the swanky car park of the swanky private hospital awaiting my appointment. I miss normality more than could have imagined and have to admit this has left me more than usually angry at the world. I am banging along close to the redline and it only takes a careless comment or ill judged lane dicipline to fire me into a psychopathic rage.

(Saved as a draft I wrote this on my phone before meeting the great Dr Armstrong see Chapter 6)

Chapter 6 ....the end of the beginning

Doctor Armstrong is my saviour!
Having built my hopes towards this consultation it was unlikely that the reality could ever match my expectations.....but.
I was immediately impressed with his relaxed manner he gathered information from me, gave me his opinion that this was (as guessed) MG.
He went on to explain the way in which this condition interferes with signal being passed across the neuro muscular junction at the interface between nerve and muscle, explaining that the antibodies being produced by my Thymus gland are masking the nicotinic  receptors on my muscles, reducing the number of receptors available to take up the acetylcholine that my nerves produce.
In turn this reduces the twitching ability of the muscle which is not receiving the signal to 'act'. Phew I really am beginning to grasp this thing.

In short as Bob the Builder or President Obama might say HE CAN FIX IT!

The £250 fee for this consultation was worth every penny, as he began to describe the treatment I would receive, I stopped him to explain that I would be swapping from this point to the NHS.....instead of the embarrassed silence I had feared he brushed my concerns aside explaining  that he would be dealing with me either way and the treatment would be the same........
SUCH GREAT NEWS, as by this point I had decided that this was the only person I wanted to treat me.
Even as my speech impediment developed at no point did I feel uncomfortable.

His compassion was palpable and I did not feel seperated, as is so often the case by the professional boundary.

He suggested a couple of blood tests were necessary and at about £200 this seemed like good value, as it would save a couple of days.
Having realised however that the bloods had been taken off site that day, he made a snap decision to invite me to see him at 12.30pm on Wednesday at Royal Berks without an appointment!
At this point I jumped to my feet and ran around his office wailing YOOOOOO Da MAN YOOOOO Da MAN YOOOOO Da BOSS MAN!! I didn't of course, but I did say I felt like giving him a cuddle, most unlike me and I think, given his reaction, unlike him too, he smiled and suggested that my thanks were premature and that I should wait until I'm better, when I could give him a judo lesson instead.

This missed the point for me as I now feel like my silent freefall is over, someone who knows about this is finally aware and acting on it.

Of course I explained all of this, but by this point it my hitherto erudite delivery had taken on the threatening flavour of a spit drenched scary old drunk man ramble.....ttttth  aaah jussss wanna saaay thhhhhnnnnnnkuuu tthhhhhurbbbbs tthhh!

"What did that man say daddy?" " Don't look at him Roger.... come along quickly.... don't stare"!

I am looking forward to starting my acetylcholinesterase inhibitors tomorrow followed by steroids for about a year with the attendant weight gain,(mental note better stop laughing at fatties).

Can't wait to get back to teaching my little warriors.

Bye for now its gone midnight and I have this condition called ..... did I tell you about the time.... blaa blaaa blaaa..... yes Bertie was not at all happy and can tell you he didn't mind jolly well letting them know particularly given that..... blaaa blaa blaaa
x

Chapter 5 (All quiet on the Western Front)

I have come to realise over the past few days that reducing my verbal output has unexpected advantages.
With the requirement to limit my speech I have developed a useful tendency to speak only when I have something to say, something, that is, that matters to me.
This limitation has undoubtedly had some advantages for the people around me as well, giving them space to speak without interruption, and perhaps more importantly, I am LISTENING..... finally listening to what they have to say.
With this more selfless approach to communication, I have come to understand......(he paused briefly, brushing his blonde fringe from his brow and gazing wistfully out of the cottage window, across the neatly clipped lawn, he leanined back in his leather wingback armchair and making a mental note to speak to Joe about weeds visible in the border) THAT IT'S LARGELY SHITE!

(Only joshing Mrs Viv).

It is liberating in a strange way and I am hopeful I can remember this when (and if) I manage to throw of my speech impediment.

I have always admired people that talk sparingly, it seems to convey some kind of deeper personality or intelligence.
I once knew a man who could hold a group of people in his grip with just such a ploy.
When, during a meeting, he was asked a direct question, he would suck on his pencil and as silence descended.......and became almost unbearable, he would begin his answer.
At this point, confident that everyone was sold on his Gandalfian status and sage like wisdom, he knew anything he said would be considered deep, well considered and that his audience would consider themselves privileged to be receiving his thoughts..
Like some real life wizard of Oz I finally glimpsed the truth, the day I saw behind the curtain was the day that I realised that the copius notes and drawings, he appeared to take whilst avoiding the mundane issues of the meeting were in fact childlike doodles, he was a fraud but he worked his audiences endlessly with the same trick.
I hope to rise Zen like above this chicanery and actually spend more time listening and not just hearing my family and friends.
I'm sure if I get through this I shall re-instate my machine gun speech delivery, appearing to listen whilst actually thinking about what I'm about to say next. It would be funnier if wasn't at least half true.

On a lighter note I have spent today flopping about with lovely Zeynep and edible Yasmin, we had a lovely roast lamb lunch which pushed my weakened chew and swallow muscles to the limit but well worth it!
We washed it down with a bottle of 2010 Bourgogne Pinot Noir, a mellow Burgundy with cheeky notes of fresh berries and mellow spices (we are from Wokingham you see)..

My neck is aching gain today, I am really hoping that this isn't an early indication that my neck muscles are next! I also struggled to get a screw top off of a jar of gherkins yesterday, finally resorting to stabbing the lid to pop the vacuum. These are always difficult but I am bound to wonder whether my grip is weakening....on reality maybe but that was always a tenuous grip at best.

Doctor Armstrong tomorrow, poor Doctor Armstrong could never live up to the expectations I have placed on him and this consultation. I am excited in the way that a small child is on Christmas eve.

Go on mush fix it please....  FIX IT.... FIX IT..... NOW (please).

(semi normal activity 4)

Chapter 4 

Friday 21st June

Really enjoyed some semi normal activity last night, it was a great way to forget this stuff as I watched Olly deliver two good judo classes at LVS.
With both eyes taped open and aviator style sunglasses over my normal glasses I looked like some weird
Top Gun meets Frankenstein's monster combo!
The children appeared (from the little I could see) to take it all their stride, with top marks to dear Tano who continued to carry on conversations with me as though nothing was amiss.

I swear children are some kind of superior species of human, their honesty and lack of ambiguity is so refreshing.
Take for instance my good friend Henry, who, on being asked by his mum to wish me well, instead decided to ask me why I was writing things down rather than talking! At this point my speech impediment was turned to level 10 on the bluthhhhpssometer so it was faster to scribble!

Quite understandably he then asked why I was wearing two pairs of glasses..... removing my sunglasses I explained that "THESE are to save you from looking at THIS!" he stared at my taped eyelids in a bemused way as I removed the second pair, saying "AAAAAND these are for me to see with!"

I removed both pairs with a dramatic flourish, in the way a magician completes the reveal, at the end of an impressive trick.... dear Henry however remained singularly unimpressed.
My beautifully engineered wit was lost in translation as he heard something like
  "tttthhhhsbbb sss THIS!" followed by "AAAAAAND  thhhhssssthbbbsss with!".

The fact that Henry did not run screaming is a testament to the trust he has built in me, imagine then how poor Declan must have felt.
Declan an LVS pupil chose last night to make his debut at judo and as I spluttered in his face attempting to guide him through his first techniques I must have presented a truly bizzare spectacle (or spectacles)!
He showed great promise and I hope he returns, but I imagine that either way, the memory of his first judo lesson will live with him for the rest of his life (possibly wake him screaming in a lather of sweat too)!

The final indignity was inflicted on me when an athletic looking man approached me asking whether I was the coach. He had already scored 10 out of 10 for even approaching me given my appearance,
"Yes" I replied with no trouble at all......... and it was from this promising start that things went down hill quickly. He introduced himself as David Simpson a name that immediately stuck a chord somewhere in my mind. He asked me about the mats we were using, explaining that a Korean Martial art was practiced at his school.
As he confirmed that this was Holme Grange School a great independent school near my house in Wokingham that I have wanted to approach for a long time..
I realised, with growing horror, that this was in fact the head of sport from Holme Grange, someone I had  written to him only recently at the behest of a parent!

I tried in vain to explain my current predicament and why I had not followed my letter with the promised phone call. To his credit through all of this, he remained remarkably calm and polite, as my son Oliver gallantly attempted to translate!
He gave me his email address (I had obviously impressed him with my wit and charm) and as he left I promised to call him once I regain control of my body!
This condition I no longer confer on it the status that is attached to the title 'disease', just who does it think it is eh) marches on. I have been watching and waiting for its next cheap trick and whilst I could be imagining it I suspect that I maybe feeling a slight numbness in my fingers, nothing that can't be fixed with sellotape and string of course!


Roll on Monday and my appointment, at least this feeling of silent freefall will be at an end as I shall be 'in the system'.
I intend to write myself a list of questions for Doctor Armstrong at £250 I think I should try and list at least 250 questions at least getting some value for my dear Mum's money!
Despite it supposedly affecting a tiny number of people my friend Simon Sherwood has just phoned and told me that his sister in law has it and that he was until now unaware. She has offered advice and confirmed that once treated I shall be able to resume my life as before.
Some adjustments will have to be made so no more MMA, no more Brazilian Jui Jitsu, lighter Kettlebells and start running ... sorry jogging!
I just spoke with an old friend Colin Harding and explained how I now have to watch the beginnings of my hard won six pack dissolve.
I have reached a level of fitness that I haven't had since being in the U21 British Judo team at 19 and for what?
I suppose if I have to go down hill it is better to start further up the hill.....

 and on that dreary note!

Chapter 3

Wednesday 19th June.
I just spoke with my dear old judo friend Paul Knight to explain that I wouldn't be doing judo tonight.
Last Wednesday, only a week ago I was texting him and explaining that I didn't fancy judo as my left eyelid had drooped.... oh those halcyon days eh!
Depressed myself this afternoon watching a number of Youtube clips of fellow sufferers keeping their very public diaries.
FELLOW SUFFERERS! Listen to me,  already part of some noble community, bound together by our suffering!
aaaand by the way Mr Fricker you talk glibly of their public diaries so (I ask myself) what is this?
I have explained/excused it to myself as a way of keeping friends and family in the loop and a way by which I can pass news to people who care about me.

It feels however like an opportunity to let rip and my single finger typing is already a faster way to communicate than my slack lipped nasal mumbling.


There we are feeling better already!

A well meaning and decent person, on hearing of my condition asked me if I had heard about 'balancing my body', she went on to explain that as everything has a ph value and my diet should be 'balanced' in ph terms.
I tried tactfully to tell her that a good deal of money and time was being spent by scientists in understanding this disease and it's causes and that if this was the case, they probably would have arrived at this conclusion by now....
Uninpressed she continued to explain, that, on giving birth to her first child, she developed lumps in her legs, which was apparently "all down to stress" .

Really? I said  (when SHUT UP AND DIE was what crossed my mind).
My darling wife also mused today that "these things happen for a reason" mmmm God is moving in a mysterious way then....
It's at times when confronted by these ideas that I am most comfortable in my Athesim.
On a lighter note my darling Yasmin at not quite 3 years old has an uncanny awareness of my problems, she 'mended' my eye with a careful application of elastic band this afternoon while we flopped about on her trampoline. A simple expression of empathy can mean more than any words could and gives me hope for all of us.
I hope I can learn to keep a lid on my anger as it is ultimately only likely to damage those closest to me and that includes me.

Bye for now I'm off for a beer and a dribble at the judo club as a non combatant.

https://www.facebook.com/home.php

Chapter 2

On Tuesday 18th June I am struggling to see my phone screen as I type this. As things progress I find myself ticking off more of the symptoms that I was reading about a few short days ago...tick symptom 'double vision'.
 One symptom that puzzled me was "a nasal sounding speech impediment". What might that sound like I thought... I didn't have to wait long, as I tried to deliver a lesson in Streatley Primary School yesterday I began to develop the predicted nasal accent..tick symptom. One strange way through this particular affliction was to adopt a cockney geezer accent which whilst an amuising disguise for the problem,  didn't offer a workable long term solution, unless I start a market stall in Walthamstow?. My thoughtful wife has bought plenty of 'easy chew' food for me, only yesterday I considered this an over reaction. Today having just slopped and dribbled my way through a bowl of Mulegatany soup, it seems she was right...tick symptom difficulty chewing. A sense of humour is it seems a useful asset in this new reality but sadly a smile is now denied me...tick symptom 'snarl like smile' just checked mine out and there it is.  My dear mum has treated me to a private consultation with a neurologist in 5 days time bless her! This beats the 2 weeks my GP suggested it would take as an 'urgent' case on the NHS. At this rate of descent I wonder how much of me would be left in 2 weeks! I have now informed all of my schools of thje situation and explained that I shall return as soon as I am able. My last lesson at Binfield was strangely moving the children were really well behaved and their empathy was clear. It really is such a great job and I shall miss it very much until, with help. I beat this MG.
Bye for now,

MF

Chapter 1

On Saturday 15th June 2013...... having tried WH Smiths I found myself searching the shelves at my local Ironmongery store for double sided tape and considering how fast my life had changed.

Why don't WH Smith sell it double sided tape? The child shop assistant explained "that's one fing everyone asks for an we avn't got").

It had been only 5 days from my first appointment with my GP on the previous Monday, when I had been assured that my drooping left eyelid was nothing to be too concerned about.

I considered that this relaxed attitude, maybe a consequence of this being my eye and not his.

He pronounced it a Pstosis (silent p but not in your pants please) and told me that the strange episodes of double vision I had experienced were unrelated. 

In this short time circumstances had moved my life in a previously unimaginable way and I searched the shelves of Mr Robert Dyas in the way one might explore using the wrong end of a smeary telescope, with my field of vision reduced by both my left and right eyelids at half mast. 

I found it and with a feeling of excitement headed off to the park, with my daughter Yasmin.

Patience has never been a strength for me and after what seemed like an age pushing Yasmin on the swing, she finally tired of it and set off for the slide.

This allowed me the opportunity I had been anticipating and I tore off a section of tape approx. 10mm long by 5mm wide and carefully attached it to my eyelid.

Of course this was after I had carefully stuck it down a few times on my hand to reduce it's adhesion (one cannot be too careful).

This rudimentary but nevertheless practical attempt at lifting my eyelid enough to get some vision back was partially successful,however, following a few further attempts in my bathroom, I reverted to my original solution which, whilst more effective was also more likely to frighten small children..

A strip of standard Sellotape about 30mm in length can be remarkably effective in keeping one's eyes open and also scores top marks for comedic effect (I am using a pair of 'Patent Pending Fricker Keep Ups' as I type this)..

I am already making mental plans to get me through my next big test which is a day coaching at a judo competition. 

I have decided to trial contact lenses in conjunction with my Mk 1 Sellotape strips to both eyes covered with an enormous pair of ladies sunglasses.

Would I rather risk being considered a pre-op transexual judo coach.

I feel that my dark sense of the absurd is going to be a key to getting me through the next chapter.

My return to my GP 2 days ago convinced him that it was neurological, as it was now bi-lateral (both sides... keep up).

This news opened a Pandora's Box, full of dark possibility but his best guess is Myasthenia Gravis an auto immune disorder that interferes with muscle strength by reducing the signals received from nerves.

I have of course Googled this condition endlessly and I am now watching my body with concern. This evening I struggled to control my lips whilst eating my dinner and was struggling to speak without slurring as I got tired

This is likely to prove a huge change for me as I have been training really hard at MMA BJJ and Kettlebells, reaching a great level of fitness which I now have to watch disappear, a day at a time.

I have at least the love of a great wife and  family which I suspect I shall need.. 

Tomorrow I am making an early start and so (dear myself) it's off to bed. .