Category Archives: Emotions

Nov 24 2014
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Emotions

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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Nov 11 2014
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Emotions

Mea Culpa

sorryI have lost two very dear friends recently – all my own fault.

Looking back, my behaviour was abominable. One friend, I only called when I was distressed. The other, when I felt ok. Both probably felt cheated and used and I don’t blame them.

This is a very hard post to write, but it has to be said. There’s only so much nonsense our friends will take.

Sure, some of our friends will drift away, unable to cope with our new state. All the more reason to nurture the ones who stayed. Which is where I went wrong, so very badly wrong.

I admit it, I was selfish. It was all about me. I ignored the things they told me about their own lives. I blanked it out, puffed up with MS self-importance. This was happening to ME. End of.

What I forgot in the MS Haze, is that those dear friends have lives of their own, with the same bad news, tragedies, ongoing sadness. In a way, I used and abused their kindness.

I am doing a lot of reflecting. Ongoing. And I am shocked and saddened by the grief I may have put on others in my pursuit of advice and help. In a tiny small way, I took a bouquet of flowers to one of those I had annoyed, just this afternoon. Then ran back in to reassure her that I had blocked her number.  I wouldn’t call again.

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Aug 20 2014
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Emotions

The Secret Diary of Stumbling, Age 37 and 3/4

secret diaryI flicked through my MS diary the other day.

Looking back over the heavily-scribbled (and, yes, tear/coffee/wine-stained) pages, it charts my confusion, fear and ignominious entry into a whole new world, complete with a seemingly impenetrable language all of it’s own.

Trusted health websites always advise you to document everything, from the very first inkling that something is wrong – comes in handy for meeting with a Consultant who may just allocate you seven minutes (including an awkward silence when fumbling taking shoes off – will he notice my holey, mismatched socks?), if you’re lucky. And they may  bark random, medically-sounding words at you.

So I did. A bit like swotting up for appearing on Mastermind, with specialist-subject questions fired every 18 seconds. I failed. Miserably. I was sent home with a leaflet about MS fatigue and the MS relapse telephone number. But I didn’t have MS? Confused? Me too. I didn’t understand the ‘multiple’ in multiple sclerosis. D’oh.

One of my first entries, back in June 2011 is, ‘why am I so hot?? Mum thinks it could be an early menopause, grrrrr. Noooooooooo!!!’ Ha! Looking back, that would have been the least of my worries, Tena Lady adventures to one side. And anyhow, I was quite enjoying the flushed-milkmaid visage I seemed to be rocking, after years of hovering just above the ‘palest of the pale Celtic face look’, i.e. close to corpse-like. Or Twilight.

Quite suddenly though, the language gets more technical- I have oligoclonal bands in my CSF, I have lesions in the subcortical, periventricular and deep white matter suggestive of demyelination. I am diagnosed with CIS. Nope, no idea.

According to my diary, I called the MS nurse later that month to ask about the MS hug, an excruciating tightening around my ribs. Normal. What about not being able to write properly? Normal. Pins and needles? Normal. Foot drop. Yup, you’ve guessed it. Over the next few months, I moved from CIS to possible to probable MS, as if I were on an evil, unstoppable conveyor belt.

I called the MS nurse again. Electric shocks in my neck? Normal. Falling over? Normal. Slurred speech? Normal. Stabbing pains? Normal. Wouldn’t it be great to have a pain that wasn’t connected to MS?

May 2012. My last relapse. My hands. Of all things. Crockery was smashed left, right and centre, my mum bought me plastic tumblers and my friends had enormous fun cheering me as I dropped things without warning. And all along, the excruciating, tedious, soul-destroying fatigue.

Late May 2012. Diagnosed. At last. An absolute dichotomy. Utter relief mixed with utter terror. The diary’s closed now. I keep my new notes elsewhere. Thanks to cog-fog though, I haven’t a clue where they are…

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Aug 08 2014
18 Comments
Emotions

You Can’t See The Stars When You’re Staring At The Ground

hunchbackMS is seriously turning me into a hunchback.

Over the last few years, I seem to have acquired rounded shoulders, and when I walk I automatically stare dolefully downwards, using my expert laser vision to scan for potential slips, trip-ups and mishaps.

I only really noticed this when my trainer asked me to put my shoulders back and look straight ahead. Oh, really?  Ohhhhhhh – kaaaay. Creak. Creak. Oh. Blimey. Hey! I’m six inches taller. Hey, I have a proper posture. Like in the magazines. S’mazing.

I used to strut. After years of being taller than your average British female (a not-that tall 5′ 8″), proudly sashaying along any pavement in high-heeled Italian boots, cobblestones no problem, I am now one of those people I used to cross the road to avoid. I mutter to myself, eyes fixed to the ground. ‘Meh, see! Told you, blinking stoopid pavement. Tut. Yada, yada, council, etc.’

In the three years since MS barged into my life, I have not walked tall. At all (lol). My shoulders are my shield, the pavements my enemy. I can literally (and I don’t use that term lightly), trip over dust. My shoes are all scuffed, bearing the brunt of my clownish walking.

But. Something magical happened when the trainer told me to stand up straight (in a very nice way). It was almost like a sixth-form A Level English Language metaphor – ‘after three years of looking downwards, she finally faced the world head on – indicative of how she was able to now walk tall, walk proud, defying the world she had unwittingly constructed.’ Discuss. 

You know what? There’s definitely something in that. I was so busy seeking out obstacles on the ground, I missed the beautiful vistas passing me by. I tuned out the white noise of my friends’ concern. I was totally focused on putting one foot in front of the other. Simple, no?

Well, no. I missed so much. I didn’t take the time to breathe, look up and be thankful I was still here, still in one (albeit shaky) piece. My head was buried in the sand. Friends peeled away. Life atrophied. The pity parties multiplied.

I hope that, along with torturing me with endless squats, the trainer has given me the space to hold my head up high once again. What’d I miss?

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Jul 13 2014
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Emotions

Not Dressed Up, Nowhere To Go

cougarSomething disturbing happened the other day.

I was out with a friend, dressed casually, sipping a glass of wine with two hands in one of those faux-bonhomie wine bars with ‘ironic’ artwork and staff with obligatory piercings/sullen expressions/selective deafness. But I digress.

Two couples entered, both women in spray-on dresses, dazzling white teeth, teetering heels and big, big hair.

After looking longingly at their heels (sigh), I clocked that their partners were much younger. Nothing wrong with that. After collecting their drinks from the bar, they perched on the chairs next to us, so I couldn’t help but do a nosy.

The men (boys) seemed unable to sit still without squeezing the women every five minutes, in, ahem, not-totally-appropriate places. I’m no prude but this was seriously interrupting my fascinating conversation about my new Gorgonzola and steak recipe and I quickly lost my thread.

So we bar-hopped to the next place. Five minutes later, the same couples came tumbling through the door. To cut a long story short, I found myself in a place surrounded by eerily similar-looking twosomes, like some kind of weird parallel zone. ‘Yell at me if I ever get like that just to get a man when I’m that old’ I remarked smugly, casting my beady eye around the mayhem.

My former friend choked on his drink and said ‘they’re our age, look, that one’s got a ‘Still Flirty At 40’ badge on and that one’s definitely had Botox. They’re all in their 40’s. Like us.’

He was right. I sulked the rest of the evening, lying awake later that night pondering my Sad Single Situation. Is this the only way to date in my 40’s? As if it wasn’t hard enough being divorced with a grumpy Teenager, a rude cat and to top it all, MS, does entering my fifth decade condemn me to a life of body-con crash diets, hair extensions and laughing politely when my date burps the Welsh national anthem?

The only alternative seems to be joining an evening class in the autumn, perhaps signing up to Very Hot Indian Cooking, in the hope that I will find my soulmate over some poppadoms and mango chutney. I reckon the powers that be in adult education should start a brand-new class for ‘peeps who want to meet other peeps but have to pretend to be interested in Very Hot Indian Cooking or Yoga for Complete and Utter Numptys’. Heels and hair extensions preferred, but not essential…..

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