Monthly Archives: September 2013

A Day Off From MS

in my dreamsLast night, after being woken in the wee small hours yet again with nerve pain and unable to get back to sleep, my mind wandered.

Just what would it be like to have one full day off from MS? How amazing would that be?

I would spring out of bed, full of beans and head straight for a boiling hot bath, using up my dusty bottle of Matey bubbles. No non-slip bath mat today, no pesky heat intolerance.

After a long soak, I’d deftly apply my make up, managing to execute a perfect sweep of eyeliner. I’d get dressed easily, no fumbling over buttons, no tripping over my feet and I’d be able to wear jeans I haven’t fitted in over two years. And heels! Beautiful heels. How I’ve missed you. I’d put them on and not take them off all day. I would sashay everywhere. I would stride, head held high. No looking at the pavements.

In fact, I’d take the day off work and spend it walking. Just walking, even in heels. And I’d go to cute little gift shops where I’d be unafraid of picking up glass ornaments or bumping into things or small children. I’d find a really hot, really busy cafe and spend a stress-free hour sipping a coffee, people-watching. I’d call up friends out of the blue, suggesting a night out later. I’d know for sure I’d still have the energy.

On the way home I’d do all my Christmas shopping in one go, undaunted by the crowds,  balancing the bags easily, going through my long list from memory. Back home, I’d wrap and label all the gifts then cook a fiendishly complex recipe from scratch. I’d spring clean my entire house. I’d even dig out the feather duster. Then I’d do a whole pile of ironing. And spend a couple of hours weeding the garden, all before slipping in to something fabulous (with my heels, natch) and get ready to go out.

The evening would pass in a happy blur of catching up with long-neglected friends. I’d charm them with my wit and fast responses. I’d remember the punchlines to long jokes, I’d carry five drinks at a time back from the bar.

I wouldn’t come back til gone midnight, falling happily in to bed. Then I’d wake in the wee small hours. With nerve pain…

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My Boss, He’s Brave

breakfastMy poor boss, who’s been employing me since I was sacked from my last job for having MS, is a very patient man.

He runs his own construction company, so finding a suitable post for me was never going to be easy.

I’m very good at my job though – I’m brilliant at helping him out (‘you missed a bit, no not there, there’), I don’t mind eating bacon rolls for breakfast and although he casts longing glances at his radio, I’m sure he much prefers listening to me chattering away about something and nothing in between checking Twitter on my phone and sitting in the van to keep warm.

Thankfully for him, I’m not on site much. More often than not I get to sit at home and make phonecalls and undertake important research, like a project manager kind of role.

‘Hello, is that Bricking It Ltd?’

‘Great, um, I just wondered how much your red bricks are?’

‘How many? Oh, that’s a good question.’

‘Shall we say, enough for an extension? Nope, don’t know the size, but it’s kind of big.’

Anyway, the Boss decided to have a Quiet Word last week and started with, ‘look, this isn’t working out, is it?’ Oh. As I was about to hand over my Stanley knife, woolly hat and McDonalds coffee loyalty card (only one coffee bean sticker left to collect), he put an interesting proposition to me. He asked me not only continue to work on his quotes and paperwork, but also keep his website up to date and run a Twitter account in his company name – become his Social Media Manager (posh).

Getting all excited, I grabbed his arm and said, ‘Yes! Right, we need to find your voice, sweetie, your voice. What kind of Twitter voice do you want to have? Funny? Factual? Serious?’ To cut a long story short (let’s just say the Boss’s eyes glazed over), he’s going to leave that all to me. Well, my mind’s been working overtime.

I will tweet the latest Gregg’s sausage roll deals, interesting facts about architraves and skirting boards and throw in a few philosophical musings, such as ‘the journey of a thousand miles begins with one brick.’  I reckon the Boss will be most impressed.

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A Leek, A Thistle and A Diagnosis

flagsThis year we’re toasting the 25th anniversary of our family’s move from Scotland to Wales. Sláinte, Iechyd Da and cheers!

In the summer of 1988, with Bros and Glen Medeiros  riding high in the charts, I played The Proclaimers endlessly on my tape recorder, gulping back tears as I listened to repeated renditions of ‘Letter From America’ whilst  unpacking my boxes.

My Welsh friends now tease me that after all these years, surely I’m more Welsh than Scottish, especially as I now get a lump in my throat when I hear the Welsh national anthem? This got me thinking. Does it really matter if I feel more Welsh than Scottish or vice versa? It’s a bit like MS. Once you’re labelled with it, does it then define who you are?

When I was a pretentious 20-something gadding around Europe, if someone asked me where I was from, I would loftily declare that I was a Citizen of the World. Cringe. I mean, really?

But there’s something in that – I think what it boils down to is a sense of belonging, not labels. When I started my Welsh secondary, once the initial curiosity about me had died down (‘do you have electricity in Scotland?’, ‘why do you sound like an extra from Taggart?’), I found my own place in a group of like-minded people, drawn together by our shared passion for The Cure, Kraftwerk and Doc Martin boots. The nationality label didn’t come in to it.

It’s the same with MS. I’ve lost count of the number of people who say to me, ‘Oh, I know someone with MS, I’ll get you guys together’. Um no, it’s ok thanks. We may be just like any other group of people bound together by a common background, but we all find our own place within that group. Some you get on with, some you don’t.

Like any group though, it has it’s own language. When people with MS get together, they tend to get the basics out the way, i.e. RRMS, diagnosed x years ago, on x treatment. Similarly, when we first moved here, we quickly learned that sannies were called daps, rolls were baps and the Welsh word for carrot is ‘moron’.

What am I trying to say? Just that I may have MS, but I’m much, much more than that label. A Citizen of the World, if you like….

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Blood, Sweat And No Ideas

exam stressIn a little over two weeks, I’ll be sitting what I hope will be my final ever exam. A three hour written paper.

Having the attention span of a gnat is proving problematic though.

I’ve spent hours (days, weeks) creating the most fabulous study notes. Colour-coded, bullet-pointed, succinct. They really are quite lovely. I settle myself down, ready to commit some facts to memory. And that’s the problem. My memory has taken a long sabbatical and I’ve got no idea when it’s coming back.

I read a few study points and my brain is full. Maybe I’ll just rest my eyes for five minutes. An hour later, I wake up with a start, study notes still clutched in my hands. All hope of absorbing essential nuggets of knowledge by osmosis fades. I look over past exam papers with a growing sense of horror. What hope do I have of writing dazzling answers when I can’t even understand the questions?

I had such high hopes when I started the university course six years ago. I whizzed through the first four years, feeling smug when I achieved pretty decent essay and exam scores. This was part of my Plan – a new career path which would grow alongside The Teenager, so come graduation, I would be ready for the next stage, an MA. Then, when The Teenager reached 16, I would step in to a wonderful new job.

Thanks to MS, those dreams now lie in tatters, and my so-called career path has become overgrown and inaccessible. But, hey, I’ve never been one to give up that easily. I’ll do something completely different. Just not quite sure what yet. A non-stressful job that utilises all my talents? I’m thinking cake tester (nah, not enough chocolate in that one, I’ll try the other one, ta very much) or a flat shoe expert, where I can try out the very latest styles and give them a thumbs up or down and keep the ones I like.

In the meantime, exam day is fast approaching and my brain is melting under the pressure. I daydream about what life will be like after 1pm on October 9th. I will be free! I will ceremoniously burn all my study notes and raise a toast to the last six years. Despite everything, I will have made it through.

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Scream If You Wanna Go Faster

fairgroundA lot of people say living with MS is like being on a roller coaster. I’d go further – MS is one big scary fairground.

Ladies and Gentlemen, roll up for a thrilling ride on the MS Ghost Train! Prepare to feel your heart in your mouth as you hurtle round sharp corners, never knowing quite what devilish surprise will jump out at you next.

This train won’t slow down and there’s plenty of shocks galore. Hold on tight! You might be sitting with a friend, but it’s dark and you won’t always be able to see them.

Or try the dodgems! C’mon, you’re good at this already, bumping in to other people, never going in a straight line. You’re teeth might be rattling, but it’s all good fun, right?

Too much for you? Try something gentler. How about a ride on the merry-go-round? Choose your horse wisely though, you’ll be on it for a while, going round and round and round in circles. Hey, just like your life right now! Please do not attempt to dismount while the ride is in motion, we cannot be held responsible.

Now enter the famous Hall of Mirrors! Fall about laughing as you point at yourself! No, not that mirror, the next one. Yes, that’s really you! Well, you’ve certainly put on weight, haven’t you and it’s not all down to the candyfloss.

Or try the grabber machine – you know exactly what this is like! Go on, steer the metal hand, drop it down and grab that teddy. Oh bad luck, you just can’t seem to get a grip on it, eh? Better luck next time!

Why not round off a trip to the MS Fairground with a visit to our resident clairvoyant, Madame ZsaaaBlanko? Tenth generation fortune teller! Mind the curtain and take a seat. She’ll look in to your future right before your very eyes. Everything you ever wanted to know but were too afraid to ask.

Oh. There seems to be a bit of a problem. Your future seems to be rather uncertain at the moment, but Madame can tell you you’ll  shortly be taking a trip and will come into some money. And there’s someone with the initial A who’s really important to you. Or is it D? Maybe S.

Thank you for visiting us. The exit is on the left. What’s that? You can’t leave?

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