Excuses, Excuses

excusesHmm, a bit of a controversial post, so if you are of a nervous, and/or trolling disposition, click away now.

I’ve been thinking about a whole range of people I’ve met over the last few years; people who’ve had strokes in their 40’s, people who have faced tremendous adversity and of course, people with MS.

Taking MS for example, as I kind of know a bit more about that than other illnesses. I’m not talking about newly-diagnosed people – I was an absolute train wreck for over two years  (and some would say I still am, but in moderation) – but people who  have had time to adjust to MS and all it entails.

You know them – ‘Ah, no, couldn’t possibly do that, MS, you know?’ or ‘would love to, but can’t, MS’. Or even, ‘what do you know, my MS is sooooo much worse than yours’. I’m not talking about people who have a drastic decline in health. I’m talking about the majority of us who live with MS.

Of course, the image surrounding MS doesn’t help. When people – including medical professionals – recoil when you explain your diagnosis (MS being up there with the scariest of the scariest illnesses), it can be all too easy to slip into the role of wearing MS as a badge of suffering and an excuse for not partaking in ordinary life any more. Of course, of course, life has changed beyond all recognition. But. I have met people who have taken this mantle very early on and displayed it for all to see, to the detriment of everything else. In short, it becomes their raison d’etre: I can’t do it, I have MS.

I have experienced the flip-side to this myself, many times – I can be praised for how marvellous I am to take a Masters, considering. Or continue to work, considering. However, I also know that my job-seeking days are almost behind me. I can breeze through the first interview then come to a halt at the second. You have to come clean. CV in the bin. Yes, that’s my MS excuse, but I sought other avenues and bugged friends until one of them, my long-suffering, now-ex-best-friend took a chance on me.

When MS obliterates your life and smashes it to smithereens, nod politely at the people who look at you with doleful eyes, thanking the heavens it’s not them. Do something extraordinary. If people expect nothing from you, surprise them. You have a blank page, ready to write on it anything you want.

If you decide to take up that long-forgotten hobby, do it. If you want to launch your own micro-business from your kitchen table, start a bee-keeping course, learn to make candles, do it. Not only will  you achieve something new, people will congratulate you. A win-win situation, and liberating?

For the record, I know a good few MS publications are full of people doing stuff waaaay beyond the ordinary. I will not, for the record, take up skydiving. The nearest I got was Nevada where I clung to the pilot as my friend threw himself out of a plane (which had no doors). And I won’t be trekking around Nepal any time soon. With my legs?

What I mean is, MS is a wonderful excuse, and it cuts both ways. It is an excuse to duck out of life and host an endless pity-party with like-minded individuals, OR it can be a gateway to an amazing new way to live.

Get me. Last time I saw my tutor for a portfolio one-to-one, we were talking about the possibility of progressing to a PhD. Lol. I mean, really? I have MS, don’tcha know?

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Careful, Or You’ll End Up In My Novel…

starving artistThe life of a fledging, blossoming ‘writer’ – dramatic yet slightly pensive sigh – is not an easy one.

By day I don protective clothing and slide around in mud (sounds odd until you remember I work as a project manager for a builder, plus it rains a lot in Wales).

However come nightfall, I transmogrify into a wandering scribbler, jotting down the Remarkable  and not-so-Remarkable Things I Experienced Today.

Now I’m taking a course in Creative Writing, I’m learning to see the remarkable in the unremarkable and the unremarkable in the remarkable. I think. Confused? Me too.

In short, some kind of inspiration. So much so that I’ve become totes pretentious and have started to carry a battered notebook with me at all times. Unless I forget (easily done) in which case I send a text to myself, full or random ramblings.

Anyway, I digress. Essentially I lead quite a boring life, unless you count the mud, so I don’t really get to do exciting writeable things. Yet I have found that inspiration, words, phrases and a bit of other things strike when I least expect it. Seems however, my work-mates expect it.

Like today, we are currently working up a mountain and were sitting outside rushing to finish our coffee before the wind whipped it into a frappe. It was freezing but the clouds were stunningly beautiful. I pointed this out to my colleague, mesmerised and staring at the sky with misty eyes. He checked his phone, made his excuses and swiftly went back to banging bits of wood, muttering. Then the slabs of insulation danced and skittered in the wind, as if by an invisible hand (quickly scribble note).

‘There’s a story in that’ is my most commonly-used phrase at work, followed by ‘Shut up, boss, s’not funny. I tripped’.

However, in the last few weeks, I have upped the ante. After a particularly exhausting day keeping the boss in check, I told him in low Bond-villainnesque tones that I would put him in my novel, provisionally entitled, ”Two Bacon Butties To Go, Ta, And Go Easy on the Ketchup’.

Much to my dismay, he seemed delighted and played up to his role. So now I have to put up with even more Christmas songs on a loop courtesy of the evil elves at Smooth Radio and he has cut my caramel shortbread ration. Today we had fairy cakes. No comparison, even if they did come with plastic Santa Claus rings on top (which I collect and push into the air vents in the car).

So, no, the life of a struggling author/writer isn’t easy.

But! This challenge will surely be the making of me?

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Concealing The Unavoidable

StumblingI was ‘Getting The Teenager Ready For School’ the other day.

No mean feat.

Blazer? Grunt. Tie? Grunt. Lunch money? S’not enough, my mates get, like a tenner. AND they’re allowed to buy donuts.

Anyway, in the middle of this, just as I was adjusting the straps on his empty school bag yet again, I tripped over a rug, one of many in my house.

The Teenager looked horrified. I righted myself and attempted a casual laugh. ‘Oh, d’uh, pesky rug, who put that there?’.

‘Why do you always do that? Why can’t you be normal, like other parents? I hate it.’

I tried to reassure him that I hadn’t yet had my requisite three cups of coffee and was simply tired. And yes, part of MS is stumbling and tripping.

‘Yeah, and your point is? You’re always tired. You always stumble’.

‘Am not’.

‘Are so’.

‘Am not’.

I realised that perhaps this line of reasoning wasn’t particularly mature, so I bustled around him and waved him off with a cheery, ‘have a great day at school!’, while he made shoo-ing gestures to urge me back indoors, lest any of his friends see me.

The Teenager has coped admirably since MS came into his life when he was 11 and in the middle of transitioning to high school. Not the best time for it, but MS could never be deemed a polite intruder. He’s witnessed too much, no matter how hard I try to conceal things from him. At his age, kids just want everything to be normal. They don’t want their parents to be different.

Some may ask what on earth I’m doing; why not let him see MS in all it’s glory? It’ll make him a better person. More compassionate, more caring. Fair point, but not for us. As a divorced single parent, I am his mainstay and he deserves a childhood.

I hide a lot from him, as do many other parents with issues, be it lack of money, anxiety, job insecurities, relationship stress. We want the best for our children and as such I drip-feed information to him as and when I think it is necessary. I don’t keep him in the dark, but I am selective.

He really doesn’t need to know all the ins and outs, especially my fears and worries. Why would he? Why put that extra burden on him, especially at his age when he is going through vital exams? My son is not my confidant, he is my child. And if the utmost aim of parents is to protect our children, then I will do that as long as I possibly can.

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I’m Not Special

carpe diemI have MS.

I’m not special. Or different. Or ‘suffering’, the word I hate most when referring to people with MS.

I am me. L’il ol’ me.

My brain may have taken an extended leave of absence and dotted itself with lesions, but I remain … me. Quintessentially ME ( I love that word – ‘quintessentially’, not ‘me’ ).

I think I have now  – gulp – come to the understanding that MS is here to stay. Yup, it took a while, but I can’t show it the door so what are my options?

Well, I no longer mourn what could have been, what should have been. What’s the point? Besides, my brain has forgotten so much and just struggling to remember life pre-MS is a stretch. I could have done what so many people told me to do, ‘whaaaay hheeeyyy! Give up work why dont’cha, you’re disabled, like, d’uh’.  MS is up there, among the most serious of illnesses.

And for a very long time, it was all-encompassing-serious to me. And of course, in some ways it still  is, as it pokes its way through everyday life; the stumbling, the agonising nerve pain every evening, the dropping, the falling, the garbled speech. Never underestimate MS. But it doesn’t make me special and it doesn’t mark me out as different to any other person with their own unique agony, whatever it may be.

If you had told me three years ago that I would, in my late 30’s and (very, very) early 40’s spend most of my time on my back, I would have been alarmed. Now, I am savoir faire with fatigue and all it entails; I know and recognise the signs. The sofa is my command centre and I have everything to hand, although the pesky cat has now taken up residence on the other sofa, out my reach since I de-flea’d her.

I’m not special yet I am acutely, horribly aware that I  have surpassed my father’s MS by six years, not only in terms of his age, but also the seriousness of the illness as he was living in an era before disease modifying drugs. So I refuse to be defined by MS. I am a heck of a lot more than that. The secret to controlling this awful illness is to do what it least expects you to:

  • Get out there. Make new friends. Try new things. Surprise yourself.
  • MS is cruel, there’s no denying it. But don’t deny yourself any experience, no matter how ‘trivial’.
  • Allow MS to throw into sharp relief all you want to achieve in life.

I am not suffering from MS. I thrive in spite of it.

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Packet In…

bang head hereWhat do Maltesers, Felix Crispies Cat Treats and Wotsits all have in common?

Nope, I don’t actually eat them all, honest; it’s the fact that I can’t open any of them without using Awfully Bad Language.

I first noticed this disturbing turn of events when I had settled myself on the sofa one evening with a good book and a pack of Maltesers.

Fumble, fumble. Use teeth. Grrrr. The ‘easy-tear’ opening remained unimpressed by my heroic efforts to free the chocolates nestled within and stayed stubbornly sealed.

Totally unfair. I got a bit upset before I stumbled into the kitchen and found a pair of scissors. But it’s not the point really.

‘Easy-tear’ should mean exactly that.

Just as I was coming to terms with this change of circumstance, shampoo bottles started ganging up against me. Ok, so they may not label themselves ‘Easy Squeeze’ like Mayonnaise does but you’d think it would be fairly simple to squish out  a blob of shampoo. Not a bit. Some of my bottles actively discourage me from doing this so I end up using The Teenagers’s all-in-one Body/Hair/Brain wash. My own bottles are just so darned hard to squeeze. Must be all the fancy packaging and promises. No wonder my hair is like a bonkers haystack.

I don’t think I’m asking for much. I only want to be that woman in the adverts who effortlessly opens sublime chocolates, beautifully eases out a perfect round blob of shampoo and can open a microwavable bacon buttie without weeping. But then, she has a size 2 figure and amazing hair, so I don’t really get off the starting block. Meh.

My hands just don’t work the way they used to, much like the rest of me. So perhaps I could decant stuff to make it easier and always, always have a pair of scissors handy. But then I would have to furtively snip the tops of packets when out in public. Bit weird. When did you last see someone in a pub open a shared packet of Scampi Fries with scissors? And would you want to sit next to them?

Me neither. So my quest for easy-open packets and bottles continues. We’re running out of Lynx and I’ve resorted to Kinder Eggs. Mind you, the toys these days are fabulous.

Is it me?

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