What MS Isn’t

dancingThere’s plenty written about what MS is, but what isn’t it?

It’s not:

  • An ‘easy’ illness (I’m probably not the only person to be told, ‘Well, thank goodness it’s nothing more serious, eh?’)
  • An excuse – it is what it is and I won’t be apologising for it
  • A competition – why tell me your MS is so much worse than mine? If it makes you feel better, go ahead; it just makes me feel guilty
  • Always obvious – if you passed me in the street, you would have no idea I had MS (until I stumble, but hey, I could be drunk?)
  • Cushy – you might think enforced sofa-dossing is a dream come true, I hate it with a passion
  • The same for everyone – put 500 MSers in one room and you’d have 500 different stories

Recently, stem-cell treatment for MS has hit the headlines, and how – all the tired phrases were rolled out: ‘MS sufferer’, ‘cut down in the prime of life’, ‘tragic’. Funnily enough, I am none of these. However, I have been contacted by various people over the last few days all telling me the same thing – MS is curable! You can get back to real life now! You can dance again!

Now, anyone who has ever seen me dance will know that this is not necessarily a good thing. The only shapes I throw are the bodies of other people across the dance floor as I bump into them. Yes, the news from the trial is wonderful and I couldn’t be happier and of course the media loves a good news story, but behind the headlines there are thousands of us, millions of us across the world, just trying to get on with life.

MS, and more importantly, living with MS, has changed phenomenally over the last three decades. Sadly, the public perception of it is lagging far behind. Behind every diagnosis there is a unique life story and we don’t want that to come to an abrupt halt just because our brains threw up one lesion too many.

Tagged , , ,

Our New Addition …

Bronte2I couldn’t help myself. I was (and still am) deep in mourning after my beloved cat Dora was knocked down and killed recently.

I shouldn’t have looked at the cats seeking their ‘forever home’. Their big, pleading eyes, their sad stories, their heart-wrenching starts in life.

So we now have a new addition to our little family – Brontë. Quick explanation about the somewhat pretentious name: she arrived with the name ‘Bronwen’, and, much as I love Welsh names, it seemed a bit of an odd choice for a tiny kitten, not even six months old.

She wouldn’t answer to my new choice of name, ‘Flump’ nor The Teenager’s, ‘Pancake’ or ‘Dog’. We tried out ‘Batwoman’ and ‘Kerpow’ (check out her Bat Mask), to no avail. So she became ‘Bronnie’ until one evening I called her ‘Bronty’ by mistake and she came trotting over. Result. Being of a literary persuasion (lol), she is now named after one of my favourite authors.

Anyway, she has settled in remarkably well, so well that she enjoys nothing more than scampering up my curtains and sitting on the wooden pole, grinning down at me. She also tears around the house in an endless loop and can make a toy out of anything – she’s smitten with my hair bands and has fished out seventeen of them from a bowl in my bedrooom (I counted) and laid them all on one of my rugs in an impressive pattern and every so often she returns to rearrange them.

In short, she fits in well. She’s also great to snuggle up with when the dreaded mid-afternoon MS crash happens. We mute the telly and radio, choose our blanket and flop onto the sofa.

Plus, she adores The Teenager and he’s in awe of her acrobatics (and her fondness for squatting in my larger plants before I can chase her off), although she is now banned from his bedroom after she stole his expensive headphones.

She may be hard work right now, but I wouldn’t be without her. A bit like The Teenager …

Tagged , , ,

Stumbling In Glasses

glassesI’ve just been for my annual check up with the optician and bought a chocolate bar on the way home to help ease me in gently to a new stage in my life.

Don’t get me wrong, I’m very fortunate in that I’ve had no real MS eye-related problems, apart from one inexplicable period when I used to wake up half blind, but thankfully it was short-lived.

Anyway, a small, dark room. Just me and the optician and my head in a strange contraption where he blew puffs of air into my eyes.

When he eventually turned the lights back on and I blinked a lot, he asked if I wore glasses.

‘Yup, they’re somewhere around, the cat used to play with them.’

‘I think you should find them.’

Well, all sorts of things went through my mind and I braced myself for bad news. I gulped hard and asked, ‘erm, why?’

He sighed. Oh dear.

‘Well, you see, you’re 41. You’re getting old.’

Gah.

I protested feebly that I wasn’t that old, but he patiently explained (possibly in a special voice reserved for the older clientele) that at my age, my eyesight would naturally deteriorate and it had already begun. Lovely.

Back at home, I eventually found the glasses in  a dusty corner. After cleaning them off I gave them a test run and sat in front of the computer. Ok. So maybe I could see the screen a bit better. I looked in the mirror. Ok, so maybe I could see my pores in a little more clinical definition. Hmm. Hair up or down? Messy ponytail or severe scraped-back-semi-facelift bun? At this point, The Teenager came crashing through the door unexpectedly early (he knows no other entry mode) and sniggered when he saw me.

‘Bit early for Hallowe’en? What’s for dinner? Starving.’

‘The optician says I’m getting old so I have to wear them. So there.’

‘Like, dur, I could have told you that for free, saved you some time (more sniggers). I’m gonna faint, so hungry.’

I was about to launch into a speech about respecting elderly people but he’d scarpered.

I made a cup of tea and had a little ponder, trying to look on the bright side. My glasses might make me look more intelligent. I could look even more like an anguished writer when I haunt cafes with my battered notebook. I could own this look.

I vowed to start growing old disgracefully. But first I had to sort out the MS cog fog as I had no idea where I’d left them.

Tagged , , ,

Pass Me The Spanner, Numpty

beautifulA most interesting day at work, what with the higher dose of Pregabalin settling down – it was a bit like ER, with The Builder subtly creating all the drama:

‘Spanner’

‘Yup, Boss.’

‘Snips.’

‘Yup, Boss.’

‘Hammer.’

‘Yup, Boss.’

‘Tape’.

‘Well, I have The Best of The 80′s?’ or ‘Simon and Garfunkle’.

‘Plumbing tape, you numpty’.

‘Yup, Boss. Just joking.’

And so it continued. I floated around, munching on granola bars and slurping endless cups of coffee (mine was the pink ‘Hello Kitty’ mug, the Boss got the ‘Mr Busy’ one). I seem to be having a mini-relapse since upping the Pregablin dose – my hands moving a few seconds too late or too early, feet not moving properly or dragging, dropping things and generally feeling spaced out.

A few hours later, we wrapped it up and I was dropped off at home.

The most important thing is, my nerve pain has been reduced drastically and it’s a feeling that goes way beyond relief – the nagging, crawling, aching pain in my legs every evening, making the smallest tasks impossible, has been knocked back down to just my feet. Which isn’t brilliant, but a whole lot better than before.

I can now stand up properly when The Teenager gets back from school, and look semi-parent like. I no longer lie on the sofa all evening, dreading getting up. I can read a book without the constant, nagging pain pulsing away, ruining everything.

The downside is I still feel as if I’m trapped in a marshmallow cushion. I can’t concentrate. I am very, very slow. Everything is now somehow wondrous. When I cooked pesto pasta for The Teenager this evening, I spent an inordinate amount of time just staring at the sauce after I took the lid off. So green, so pesto-y, so, well, wondrous.

I’m sure it’ll pass and my mind will realign itself with my body again (by the weekend, PLEASE). But for now, as my body refuses to do what I command it to and my mind is somewhere completely different, I will make the most of stopping to pick up leaves from the garden, turning them over and marvelling at their unique patterns, and allow myself to admire the beautiful, brown, shiny spheres that are … Maltesers. Beautiful.

Tagged , , , ,

Floating In A Most Peculiar Way

FloatingI had a consultation with my fabulous neurologist last month and we got round to discussing meds.

When the bullying started at work, I began a low-ish dose of anti-depressants (Citalopram) and they helped a lot. They got me through everything, including the legal case that followed and coming to terms with my diagnosis.

Two years down the line, I wanted to come off them as life is much, much better now, brilliant in fact, but was worried about how I’d feel. Would the pity-parties-for-one return with a vengeance? Would my Wotsit consumption multiply?

At the same time, the nerve pain in my legs and feet has increased and we discussed upping my Pregabalin dose. Luckily, Pregabalin can also be used for anxiety, so coming off the Citalopram could be a lot easier.

I then saw my GP who recommended decreasing the Citalopram gradually, i.e. moving to alternate days before cutting out completely. Sounded good?

Well, after a week I felt like death warmed up; inexplicably unmotivated, fed up, grumpy. I got worried.

Guess what? MS cog fog strikes again – I have a meds box I fill every week as I can’t be doing with faffing about with packets of pills every day. I diligently cut down the dose and popped one in the box every other day, completely forgetting I took two a day. So I basically reduced my dose by 75% overnight.

Anyway, I started the increased of Pregabalin yesterday and I don’t know if it’s psychological, but already the nerve pain has dropped dramatically. It is bliss. Unfortunately, they also made me float away quite alarmingly and lose track of where my feet where.

I went on a shopping trip with my mum. We wandered around, chatting, catching up until she said,

‘You ok dear? You seem a bit, um, odd. You’re walking funny.’

‘I’m floating! Floating. Feels kind of nice. Whoops. I meant to bump into that flower display you know. And the loo-roll pyramid.’

‘Quick, take my arm, there’s a small child in your way and you’re stumbling all over the place.’

The toddler, who was splayed on the floor, crying and drumming his feet was saved by my mum’s speedy actions. I waved at him and smiled, recalling The Teenager doing the exact same thing not so long ago.

When I got home with my shopping (a framed black-and-white picture of some empty park benches, a couple of books, a bowl and a fridge magnet), I gently bobbed on to the sofa and nodded off.

Cutting out the Citalopram is like severing the final link to a horrendous 2012 – it feels empowering. As for the floaty feeling, it’s still with me, but I’m sure it’ll settle down in the next couple of days, but for now, it’s a cushion, and it’s rather nice.

Tagged , , , , ,