Que Sera Sera

spinsterSome people know just how to pop my little bubble of happiness.

I had finally finished watching the film ‘Love and Other Drugs’ – took me three days with all the pausing and starting as essay inspiration struck.

If you haven’t seen it, here’s a recap: handsome man falls in love with beautiful woman who has young-onset Parkinson’s.

They split up a few times but then they get back together, Parkinson’s and all. Love apparently conquers everything.

Anyway, I got talking to a close friend about the film and as I was waxing lyrical, she interrupted me and said, ‘well, yeah, it’s Hollywood. Not going to happen in real life, is it? I’m sorry to say but I think you’re going to have to get used to being single. You know, what with the (whisper) MS thing’.

Before I resorted to violence, I remembered that this was the same person who once told me you can gauge whether or not someone is single from how high the pile of books is at their bedside. The reckoning is, if you’re out gallivanting with a Significant Other, you won’t have time to read books.

I’ve just been upstairs and counted. I have eight books on my table, and a photograph of me and The Teenager circa 2009. Plus I have a large canvas of some barren, wintry trees and a lone cyclist on the wall above my bed. ‘Nuff said. Maybe she has a point?

It got me thinking. Her remarks were infuriating in two ways; first to me but also to the people who can see beyond MS and fall in love with a person for who they are, MS and all. I guess I was unlucky. The person I was with during diagnosis skedaddled for the door so speedily he couldn’t open it fast enough. It took me two months of mourning before I recycled his toothbrush into a handy wotsit for cleaning round the taps.

I remain single. To be honest, and it’s not an excuse, it’s been an enlightening way of discovering how empowering it can to be. Solitude has been a patient teacher. Yet, I appear to be ‘damaged goods’. Believe me, being over 40 (only a year, mind) and divorced with a Stroppy Teenager is a death knell in itself for finding a life-companion, even without the MS thrown in.

So, if I am alone for the rest of my life, so be it. I refuse to engage in the whole coquettish  ’ooh, get me in a sparkly dress with a hold-everything-in contraption, and l’il ol’ me over 40!’ Just waiting, desperately, longingly,  for someone, anyone to reply, ‘you? Over 40? Well I never! Drink?’.

Nope, I’d far rather keep on wearing my jeans, schlepping to Uni and understanding, for the first time, that there is more to life than a possibly-elusive search for ‘The One’. When/if it happens,  it will  happen.

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Sanctioned Deviance

TalcottIf you’ve never heard of Talcott Parsons, you’ll almost certainly have felt the crushing effects of his ‘sick role’ discourse within medical sociology.

He’s the bloke who argued back in 1951 that being ill means you enter into a state of ‘sanctioned deviance’ and are therefore no longer a productive member of society. And there’s more.

My wicked deviance (for I am legally disabled) must then be ‘policed’ by the medical profession. In short, I disturb the normal social function of society. Chortle. Me?

I’m writing about this as I seem to fall into the camp of an Invisible Illness Unless I Do Something Spectacular, such as fall flat on my face or play pinball with walls. When my condition is obvious, there is an allowance so long as I play by the rules. 

Yet when it’s invisible (extreme fatigue, brain meltdown, endless nerve pain), I’m either faking it or playing up to it. I can’t win. I’ve variously been told to give up work, to find a ‘proper’ job, to go on benefits, to stay at home and watch telly. Wish they’d make their minds up. 

I’ve recently heard, ‘but you’re taking a Master’s, you can’t be thaaaaaaat bad’. The underlying insinuation being ‘oi  you lazy sod, no more malingering, be more… productive rather than floating around in hand-knitted scarves writing about trees and ladybirds’. 

Regular readers will know two things about me: first, I struggled badly during the last two years of my degree as I was going through a perpetual cycle of relapses. Second, I no longer have a set career path for a whole host of reasons. So why not push myself into something that will challenge me on every level? In all honesty, it has taken me to the limit. The emails between me and my tutor confirm this – full of doubt, fears of failure and a sense that I really had aimed way too high.

I have since settled down into academic life and my tutor is no doubt relieved not to have to handle any more tracts of self-analysis. And they were pretty badly-written streams of consciousnesses, natch.

So I challenge the sick role wholeheartedly, as have many critics. I am a productive member of society. I am single-handedly raising a well-rounded (and opinionated) Teenager. I run my house well. The cat is always fed. I work. I study. And I always turn up on time for my monthly blood tests at the doctor’s surgery. Early, in fact.

Yet there still exists in society a great desire to hold onto this sick role theory. It suits them; we can be parcelled and put to one side ready for them to cut our much needed support and mock us. We are in the stocks and right now society is taking great delight in chucking everything rotten at us.

Is it just me or does dear Mr Talcott bear a passing resemblance to someone else? Must be the moustache.

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In The Wee Small Hours

insomniaMS is a pain.

It nudges me awake at night then makes me sleep through the day.

I have a good few days off work and the bliss of sleeping in the afternoon cannot be understated.

For example, today, I made myself a lovely tuna sandwich complete with mashed capers. Perfect. Thought I’d nod off for a little while before The Essay. I woke up THREE hours later, just in time to gather myself to welcome The Teenager back home from school.

But. In the ye olden days, i.e. before MS, I used to sleep like a log. Straight through. Now, I wake at 2am, 3am, etc. Anything can wake me – a cramp, a weird hand fixed into something gruesome (ewwww) or the cat lying on my face. It has been known.

In short, sleep has become the bane of my life. I hate it and I love it. To me, it is a complete waste of valuable time. To MS, it is a necessity. So I gather my blankie around me and do my time.

I try to fight it but I always lose. Sleep is a drug when you have MS and now I can’t take Amantadine (sniff) any more, sleep is more important than ever.

I did manage to make it to my lecture last night and stayed awake. But I scratched a lot. Is that an MS symptom?

Anyway, sleep, or lack of is becoming far too much of a problem. I will not and can not, sleep my life away.

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Please Excuse My Brain, It Doesn’t Know What It’s Doing

memoryI was formally introduced to my brain after my very first MRI.

There it was, in all it’s lesioned glory, glowing brightly on the computer screen. I was entranced and tried to take in what the neurologist was telling me as he counted up the little blobs of white amidst the grey.

I used to like my brain and we got on quite well; it saw me through lots of adventures, exams and crises. And Trivial Pursuits. It could always be relied upon to make snap(ish)  decisions or mull over a myriad of options for any given situation.

Lamentably, it has decided to strike out on its own, making a bid for devolution and taking a lot of important bits with it. Now my short-term memory is atrocious. I repeat myself. I also talk about the old days, but that’s probably an age thing. I repeat myself.

I frequently apologise on behalf of my brain and it can become quite awkward. Say I’m standing in front of a huge cafe menu, chalk-boarded behind the increasingly-impatient barista. I am blank. I literally cannot think what to order. Likewise menus in restaurants, shampoos and conditioners in Boots, colours on paint charts and which wrapping paper to buy for Christmas (someone told me it was soon).

I forget the most basic facts so chatting with me can be a journey into charades. I can’t remember names, conversations or dates. I point to stuff, use my hands to describe things and say ‘aggggghhhhh, you know, that, that, um, thing with the spouty bit?’ ‘Oh, yeah, thanks, kettle.’

However, let’s look at the upsides. For one, I no longer brood on things. Drawn-out arguments are a thing of the past. I could have one on the Monday and bounce into work like Tigger on the Tuesday, all forgotten, unless I’ve blogged about it. Then I brood, meh.

But having a short-term memory means I re-experience wondrous things again and again. It’s almost as if every day is new. I get up in the morning and think, ‘wow, what a lovely day! Oh, great, I can have coffee! Wow! And the cat, isn’t she just gorgeous?’ Until, thwack, I veer into the bannister and it all comes rushing back.

That aside, I will continue to count my blessings. I equate it with a computer and how refreshing it can be to delete and send to the trash bin all that junk that’s been hanging around, and that’s got to be a good thing?

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Off Work, On The Ball

meThe boss is away soon (Abu Dhabi, Grand Prix, tsk)  so I now find myself with a lot of spare time on my hands.

I’m not back in work for ten days (*stumbles for joy*).

But.

I’m useless with time. I can sit/lie/sprawl on the sofa for hours on end, waste entire days contemplating hoovering the house and generally loll about doing nothing much apart from de-fleaing the cat.

With this in mind, I have drawn up a timetable. In these ten days I have to: go to the doctor’s twice (thyroid), write two 2.000 word essays, write a collection of short stories totalling 3,000 words, edit my blog ready for publishing, stop shoving dust balls under the rugs and hoover the house, finish Christmas shopping, clear all the leaves from the garden and make a banana cake.

Sadly, I’m useless at timetables. I work far better under pressure, and with the lure of downloading addictive trash TV, I will have to be strict with myself. And this is where I come unstuck.

I’m toying with the idea of the donkey and stick. Maybe I should hold off that first cup of wondrous coffee until I at least write one tiny paragraph of an essay. Or until I pick up the hoover. But I tried that before. I simply opened the coffee jar and inhaled deeply then picked the blasted hoover up and half-heartedly sucked up the bits of cat food around the bowls. Exhausting. And Housewives of Somewhere or Other was ready to watch and calling to me.

So I’m a little bit anxious about the days stretching ahead in front of me, but when I think back to my last day in work, today, I’m kind of relived to have a little break.

The Boss thought it would be hilarious to play the Christmas radio station. I endured five hours of back-to-back Christmas hits, with his favourites turned up loud. By the end of the day I was a gibbering wreck, with trumpets, drummer boys and halls decked with holly careering around my brain.

My first proper day off is tomorrow. I will visit the Uni library, take The Teenager to rugby training, make a banana cake and dust the telly. In readiness.

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