Sunday, 26 April 2015

Little by Little

Finding sufficient energy - even when time allows - has become something of an energy-zapping struggle in its own right thanks to the wonders of MS (as in, I wonder what it will do to me next). And by 'sufficient', I mean anything more than the calories needed to breathe.

At least I can sit here this morning and thank the MS stars that I don't have to come up with any more, ever-more, silly excuses as to why I'm not out there with the rest of the London Marathon runners. It does, however, provide plenty of time to wonder just why people would don costumes to run in when surely even running vests and shorts are already unnecessary burdens...

Anyway, like the Marathon runners and plodders, I'm finding that much of life is reduced to a series of step-by-step, little-by-little, processes - and I'm getting used to canning my frustration at such things (much to the relief of my pocket and the swear jar). My latest 'project' is a case in point.

The move to downstairs living is complete insofar as my only trips (apposite word) up the stairs are for the shower, but, while a happy enough move, it has left me with a burning need to redecorate my new surroundings. I have drilled all the necessary holes - slowly -  in order to get shelves put up, but now I am about to set out my meagre collection of 'things' upon them, I find that I 'need' to re-paint the walls and so forth.

At the second attempt (don't ask) I have the right silky paint and an array of willing brushes (the latest ones shedding bristles a lot slower than I am shedding head hair, fortunately), and the wall redecorating is progressing as planned - albeit slowly.

Today, once I've finished prevaricating... I mean, building energy reserves... I will be applying the final broad coats to the eager walls and by this evening I will be able to return all of my beloved 'saved' books to their rightful positions. Along with Death on Binky and my ravens, of course.

I may even have time to drill more holes, this time for my very nicely framed maps of the Discworld and Ankh-Morpork and my (completed and framed) jigsaw of the Witches in flight.

Just how much I manage in the end will be firmly dictated by the aforementioned energy reserves though, and today will be a lesson to self in how best to manage such things. Sitting here with my coffee, tapping away at this keyboard, I feel as fit as a flea - but I know that said flea is likely to collapse with a tired buzz at the slightest provocation. Searching out the necessary energy reserves has become, as Milton Jones said of drug-fueled farmers, like looking for a needle in....

We shall see,

Tomorrow, somewhat unusually for a Monday, holds an odd sort of promise though since I shall be traveling to London for the first dose of my new guinea pig fodder. In desperation of the sort that only MS sufferers (and maybe a few others) can perceive of, I am searching for anything that might alleviate - or halt the worsening of - some of the worst symptoms of the condition. I have volunteered to take part in a new study into a range of medications that might prove to offer answers, if not results, and my chances of getting some of the new 'hard stuff' as opposed to the control sugar group are three in four. Not that I will know either way.

Add to that the fact that my personal variant of MS is progressive and I am not sure how any result will be measured and I think even Einstein might have struggled with that one - but I will try anything that offers the slimmest of chances of progress in medical knowledge.

Such understanding is slowly being gained - little-by-little - and I genuinely want to assist. If such assistance results in benefits - however slight - for myself, then that's a happy bonus.

And that really is the condition in a nutshell - everything slows to a crawl. The knowledge, the treatments - and the sufferer.

I have the strongest feeling I will be crawling come nightfall.

Sunday, 19 April 2015

Everything in its place

And so it comes to pass - the move to downstairs living is complete (give or take a lick of paint - on the walls, not me), all the junk is junked, my new website is published, I have a nicely organised 'to do' list, my car is replaced, and I have Quoth the Raven casting his ceramic eye over me as I sit at my (new) desk,

All is well with the world. Every item has its place and more importantly everything is in its place. Now all I need to do is sleep for about a week.

I put off sitting here to write this until I had completed all the little jobs that had been mounting up as the move took shape - on the grounds that having something to look forward to would ensure that fitting a new front door bell (and agreeing with my wife which chime to select), putting Death on Binky in his place, gathering up all the scattered tools I've been using every evening this last week, setting out my collection of 'books that inspired me...' on one of the new shelves (which, by the way, are still attached to the wall), and buying the lick of paint (35 quid a lick...) did not seem quite such onerous tasks.

Naturally, now I'm finally able to sit here and type, my mind is so frazzled I can barely focus, I must remember to offer a small sacrifice to the auto-correct function at sun-rise.

Talking of which (sun-rises, not fried nerves), I was going to scribble a few words about how we should all be looking forward to the days to come. Nothing specific (in my case anyway) but a more general look at how having some goals for the coming days can help all round abilities. For a few weeks now I've been in 'spring mode' - setting myself targets and organising my life in general - and I'm rather surprised at what I have been able to achieve despite my MS-related limitations.

The change of living arrangements has been the most 'drastic' of all of the things that I have been busily organising - and achieving - and to be honest, at first it seemed to me like some sort of 'surrender' to my condition. As the days have passed, though, and I have arranged the new rooms to my taste, I have come to view the change of elevation as a massive chance to get things sorted out to my own preferences.

The result is a living space that is full of the things that my diminished mobility allows me - sounds, visions, books, wall-prints, gadgets, whisky... all the things that are important to me these days (not that whisky should be though of as an 'important' thing. Vital, maybe, but not important.

One of the things I have undertaken which has been most enchanting has been liberating the twenty books from my old library of titles that have in some way or another been most important or meaningful to me at various points in my life (and no, none of them are written in Ogham script). It was one of the little organisational 'exercises' I set myself - an idea that I had for one of the shelves which I thought might be entertaining. And it certainly has been.

For the record, here are some of the titles...

The Light Fantastic - the Terry Pratchett book that got me hooked on 30 years of laughs from that author whose death few weeks ago left me feeling so sad. And whose works are littered all over my new living space (shaped a little like an 'L').

The Rats - a James Herbert novel set near where I grew up, and my first taste of the horror genre. It began a real admiration of his work and hooked the then teenage me almost as much as females did.

The Wasp Factory - my introduction to the amazing Iain Banks and the first book to truly shock me with its amazing - and yet horribly believable - twist in the denouement.

First Among Sequels - the book that confirmed to me that Jasper Fforde could do it again and again and again - make me laugh and make my brain try to turn itself inside out.

The Secret Lemonade Drinker - Guy Bellamy's proof to me that fiction could be as funny and as sad as life ever is.

The Day of the Triffids - My first 'grown up' book and one that proved to me, through John Wyndham's words, that a story in a book need not have a conclusive ending.

Twilight Eyes - Dean Koontz's lesson in how we should not view what we perceive to be normal as something safe (or even normal itself when you see beneath the surface).

Carrie - the first work of an American author that appealed to me despite the distance between our cultures - and how, as Stephen King so neatly demonstrates, stories can include references to the familiar.

Resurrection Dreams - a true horror by Richard Layman that introduced me to more extreme mental violence. Simply creepy from cover to cover.

Quite Ugly One Morning - the first of Christopher Brookmyre's thrillers I read, and which brought dark humour to the genre for me.

Paddy Clarke, Ha Ha Ha - Roddy Doyle's delightful 'real-life' drama which was, I'm amazed to say, included in some secondary school courses, despite the very 'natural' language some of the characters employ (all f*^"ing true).

Let's Go Play at the Adams - Mendal Johnson's eerie horror which taught me that children can be even more frightening than many adults.

Magic - the first book I read as a result of seeing the film adaptation first. The film scared me a little (who isn't creeped out by 'traditional' ventriloquists' dummies?) - but William Golding's book was even creepier.

The Gun Seller - Proof that a great comedic mind really can write a thoroughly entertaining book - Hugh Laurie is more than Doctor House, the Prince Regent or half of Fry & Laurie,

Lord Foul's Bane - the first in Stephen Donaldson's Thomas Covenant series, and the first 'fantasy' tale that got me really thinking (and learning), and transporting me to an incredible land.

Something Wicked This Way Comes - Ray Bradbury's creepy tale that had me constantly thinking back to my own childhood.

Books of Blood - my introduction to the extreme horror of Clive Barker in a series of tales that are both horrific and fascinating - car-crash fiction at its very best.

Rancid Aluminium - James Hawes quite brilliant thriller-cum-real-life fiction that is steeped in the darkest humour.

American Gods - the first book that had me reading non-stop from dawn to the following dawn and one that confirmed to me that Neil Gaiman has the most amazing imagination.

Roofworld - a book by the brilliant Christopher Fowler that nearly cost me a tooth after an incident with a lamp-post in London where I was working at the time I read this first. You need to read it to understand why...

So there you have it, the twenty that made it onto the 'shelf of literary meaning'. An eclectic mix, and one that will probably change over time (as in over the next week or two, never mind beyond). It was hard enough narrowing the list down to those particular choices - now please, please, please, don't ask me to choose the absolutely most meaningful one. Or three. Or five. Or nineteen...

I might just re-read one of them soon, though. If I can ever choose which one, that is...

Sunday, 12 April 2015

Weekends (or tired feet)

They're not really homophones - weekend and weakened - but they seem to share the same sound in
my head these days, as well as having very similar meanings. And you can add 'weak ends' to that collection since it very much feels as is my feet are ready to drop off.

Regular readers (surely there must be something better to do? not that I'm suggesting you should) will know by now that I have been having 'problems' with my car. Now, not to get all MS on everyone, I must admit that my condition does mean that a car has become something of a necessity for me (I'd use one to get from the living room to the kitchen if I could fine one small enough) - so the 'prob;em' was becoming something of a 'situation critical' type of thing for me.

Anyway, the garage (bless) finally called on Friday to say that my little Rover is no more. She's expired and gone to meet her maker. She's a stiff. bereft of life, she rests in peace. She's... well you get the drift. And Python-esque or not, I shouldn't (of all people) really laugh about it.  But get this - the final, fatal, diagnosis is that the Rover has a major problem with its wiring loom. In all probability it is suffering from a series of damaging short circuits somewhere deep in that electronic brain - none of which is funny until you compare its symptoms with that of MS, a condition whereby the Myelin sheathes that insulate our nerves are eaten away, creating short circuits between the nerves themselves.

MS isn't contagious - but I think my poor old Rover has caught my condition...

So, Saturday was dedicated to finding a replacement vehicle and for once I had some immediate success. I'm now the almost proud owner of a second-hand (but very smart) Peugeot 307 - an ideal vehicle since I can get in and out of it without too-closely resembling one of the clumsier clowns at Billy Smart's latest circus offering; it's automatic, well-maintained, very reliable (or at least that's what the man selling it said, not altogether unsurprisingly), clean (for a few weeks anyway), and most importantly it's mine, all mine!

Be that as it may, though, it was still a very tiring experience. Half a weekend gone and nothing but yawns (and a nice car) to show for it.

And so Sunday arrives (ensuring that the calendar receives another successful brownie point for good, if predictable, behaviour). Today (always assuming I've stayed awake long enough to complete this and it's still Sunday) I am facing the last dregs of the move to downstairs living - the last new shelves, to be exact.

I left the start until after the Chinese Grand Prix - a tiring watch, of course - but then got stuck into the final three bags of  'miscellaneous' items, all of which deserve shelf-space and in one or two instances genuinely demand such respect (a collection of Terry Pratchett-inspired Discworld figures and some early scribblings from the pen of yours truly.- from back in the day when I could still work out which end of a pen was supposed to be used on the paper).

The two shelves were already in my possession, but of shelving brackets there proved to be a distinct dearth. Actually, more accurately there was just one bracket - and I'm fairly certain that I could never have achieved quite the same level of secure fixing with just the solitary prop, no matter how good my balancing skills are these days. And this is a guy that can trip over a level floor.

Anyway, that gave me a good excuse... I mean, reason... to take a short drive to the local DIY store where I was able to gloat at the shiny 'newness' of my Saturday car purchase while a queue of lesser mortals wound back from the car-washing service to the entryway of the car park. With a little luck and some careful parking when I drive to the office (the seagulls there seem to take delight in repaying the employees of the company with the contents of their bowels, presumably because the company named its advertising seagull 'Steven' - Steven Seagull, I kid you not), the thin sheen of wax that currently dazzles me whenever I look at the car will last a few more months yet.

So it was though that I returned home sporting four brackets and one insufferable grin. I say 'insufferable', but if course mean 'justifiable' - from this side of the teeth, anyway. Just four hours, twenty holes, one drill bit and an overflowing swear jar later, and all I need to do now is set out the reserved contents of the bags and my weekend will be finished. And me with it.

Maybe it's not really comparable with the pre-condition days, but it's been a successful weekend. But a weekend that leaves me feeling weakened and with weak ends...

Sunday, 5 April 2015

Moving on down

A relatively short post this week - stop cheering back there - because I'm still embroiled in an MS-related requirement. Nice word isn't it? Embroiled. And somehow, rather appropriate.

They say that moving is somewhat stressful - akin to being held responsible for the annihilation of an entire race - or to be less hyperbolic, the extermination of  a large proportion of one. And I can see why.

It's not even as if the address here is changing - I'm just moving from dual-floor living to a downstairs existence - but it's stressful nevertheless. I woke this morning to howling muscles, a missing toenail and blood-encrusted pinkie finger. Not exactly unusual for an MS victim and in the weirdest sense possible I was rather pleased that the roots were not relevant to the condition for once.

Broadly speaking, the move has entailed moving lots of things from various points upstairs to chaotic points downstairs, and vice versa - all with stairs occupying the middle ground. Given that my increasing difficulty with a staircase is one of the key prompts behind the move in the first pace, you might begin to understand how the stress-ometer's needle has spent a lot of the last 48 hours bent almost double.

Not that there hasn't been a few minutes here and there to pore through the detritus of the move and locate a few little - very little - gems that it has brought to light. Not all of you will appreciate the near-irony of the find, but the Death of Rats is now sitting proudly at the end of my new shelving down here in the living-come-bedroom-come-workroom. Given that he's accompanied by Death himself, Death on Binky and Gaspode, a few of you might understand the poignancy of his re-discovery.With the emphasis on 'disc', of course.

I've even located some stories I wrote many years ago when life was so much easier. There's one ratty school exercise book with the title 'The Alley Kids' which I penned when my age was still in single digits. And judging by the handwriting, when my ability to use a pen was with a single digit.

On the less fun side, I even hung a new door yesterday - probably my least favourite DIY task in all existence. But mostly it has been physical shifting of items from one room to another - and that's where the truth behind MS comes into play. You need to plan ahead because physical tiredness will take its toll sooner or later - dependent on the level of the illness. You know that at some point the legs (if you're fortunate enough to have any mobility left) will give way and you will be reduced to a quite literal crawl. I will try very hard to remember that when I next put up shelves and leave setting out my book collection on them to when I lose my leg-motive ability. Believe it or not I actually forgot that even standing, let alone lifting and setting things on shelves, would prove impossible... There's always tomorrow of course - always assuming a wardrobe doesn't fall on me.

Oh well, we live and learn (mainly learn new swear words in that instance).

At least most of the nasty stuff has been done now (including re-rooming two wardrobes that weigh approximately the same as a small family cat - always assuming you're mega-rich and everyone in your household drives either a Rolls Royce or a Churchill tank).

I've been writing this whilst sitting at my little desk (in its new location, of course) and letting my legs recover sufficiently for one more attack at furnishing, fittings and other f-words (and believe me, the swear jar is overflowing - I'd probably be cursing even more if I hadn't realised that needs shifting too at some point). So... I guess prevarication will get me nowhere and there's a shelf that needs liberating from its fixings... and apparently a table that needs re-assembling... and a rug that needs rolling up... oh, and moving from where it is to where it was,,, and a cupboard needs to have a new door hinge fitted... and... and where's the f*"!ing swear jar gone?