Monthly Archives: November 2014

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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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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