Monthly Archives: February 2015

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.

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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.

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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.

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Positively Confusing?

RubenesqueI have been fortunate enough to be interviewed recently about my book.

Half-way through, still being recorded, I asked, ‘Gah, am I sounding too positive about MS?’

A conundrum.

Rewind two years and the interviewer would have discovered me flat on the floor, holding up a wine glass, chomping on a family-sized bar of Dairy Milk. And no doubt crying. I was in a dark, shadowy and very different place.

How best to portray life with MS, almost three years after being diagnosed? I don’t want to be labelled a ‘survivor’, ‘a sufferer’ or to be hailed as ‘fighting back, despite all the odds (TM).’ I am just me, who has forged an entirely new and unexpected path through the maze that is MS. I’m still eating far too much chocolate, I’m still fat Rubenesque and I’m now officially over the hill at 41.

Is there such a thing as being positively ok with MS? Hmm. It depends.

If I’m honest, 90% of the time I think I am now used to the vile intruder that is MS. I love my home life, I love my work and I love being in Uni. Life is looking rosy and positive. It’s the other 10% that can be problematic, as anyone living with MS knows.

It’s the relentless fears, the creeping spectre of progression that haunts our darkest moments and I’m not immune to this.

But. In the meantime, as I said to the reporter, I have achieved a lot more since MS than I could ever have dreamed of. Being sacked unceremoniously from work simply for the crime of having MS was merely the start. Being bullied into submission by the very same colleagues, who just before diagnosis treated me with respect, ignited a passion to ‘live well with MS’.

So I am now living a life I love, in spite of MS. MS is with me every step of the way, excuse the pun, and it still continues to trip me up when I least expect it. The dark days are still with me and I doubt they will ever leave, but I am learning to live with them.

The article comes out tomorrow in the national newspaper of Wales. My only fear is the photograph. I am quite possibly the most un-photogenic person ever. The word ‘chubby’ springs to mind, as does ‘Paleo’, meh.

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It’s Not Right, Until It’s Alright

beginIf there’s one thing I’ve discovered from combing through my blog ready for publication, it’s that when you have a diagnosis of MS, you’ve got to cut yourself some slack.

If you’re unlucky enough to spend time in that awful waiting room, otherwise known as ‘Limboland’ (as I did) , you will understand this even more.

MS makes everything wrong – it messes up your life; your plans, your dreams, your work, your family. Yourself.

It’s just not right. It’s not fair.

I cried this out, over and over, when MS first appeared in my life, and for a long time after. How (insert swear word(s))?!?! How unjust. How dare MS intrude into my life in this way?

As people with lives, jobs, family, we desperately want to make everything … right again. Back on track.

And that is what coming to terms with MS is all about.

It’s not right. MS is indiscriminate. Thrown into chaos, we have to begin to make sense of our lives, from top to bottom.

There’s no easy way to do this. In my case, I had to grieve; everything I would never achieve, everything I was now not eligible for (medical insurance, life insurance, etc). My future with The Teenager. Not going to the beach on a beautiful day thanks to heat intolerance. Losing my job purely based on my diagnosis.

But grieving is ‘good’. Ok, it’s awful, but it also throws up our regrets. What could you miss? What can you do now? It can’t all be bad?

I’m not saying MS is good. It’s far, far from it. But if we have to embrace our unwelcome intruder, surely we should make it work for us?

With MS, our lives go wrong. Very, very wrong. But it won’t be right until it’s alright – we have to come to terms with it at some point. Why not sooner rather than later?

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