Mar 04 2016
2 Comments
Emotions

The MS Muse …

WriterAfter a very rocky start to 2016, life is slowly becoming more settled.

Sadly, MS hasn’t.

Perhaps it’s the stress of everything that has happened so far this year. And what a year.

Yet, life continues and I’m absorbing the same-old challenges MS insists on chucking in my path, like some super-charged Easter Bunny with a basketful of chocolate eggs: the slower than expected recovery from the flu, the mental fog, the tiredness (I now fall asleep sitting up, gah) and the usual increase in nerve pain.

Anyway, I plan to funnel this bounty of symptoms into my latest challenge – writing 4,000 – 6,000 words of my novel for my Masters. In six weeks.

Er. What novel?

Despite all the turmoil of the last two months – very ill relative, family dramas and ridiculous politics – I’ve at least attended my tutorials. I mean, I was there. But I appear to have taken nothing in. Thank goodness I have a scribe and I’m fascinated by the notes he sends me. Did we really discuss that? Did I actually make that terribly pretentious point?

Yup.

I’m panicking. A novel. Ok, not a whole novel, but the makings of one. Erm. Must dig out my fingerless gloves and turn the heating down. Exist on eggs boiled in saucepans of soup. Could be the makings of a new diet?

In between all this, The Teenager is interrupting my feeble efforts. He swoops downstairs, randomly flies his fingers across a few keys on my computer and sings along to Oasis hits. I mean, really? And … Stevie Wonder’s ‘Sir Duke’.

This isn’t really helping. Neither is MS. So I will call upon the MS Muse: when the worst has already happened, how bad can it be?

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Feb 24 2016
12 Comments
Emotions

What Gives?

escape2016 has been a cruel year.

A seriously ill relative.

Three health scares, one after the other, including debilitating flu.

Too much unexpected time off work, so less money coming in.

And MS is playing up.

All in all, when I raised my solitary glass of champagne as the last dregs of 2015 drained away, I could never have foreseen just how much my world would change only a few short weeks later.

Back in 2012, when I was first diagnosed with MS, I had one aim – to ensure The Teenager had as happy a life as possible, despite everything. And I’ve succeeded (ish), until now.

I’m rushing around, working, studying, catching up with Ill Relative Business. I’ve cancelled book club, haven’t been out with friends for three months and I can’t remember the last time I did something just for fun.

I’m months behind in my Uni work – my Next Great Novel is on hold. I pray I can carve out some time to catch up. I’m floundering.

So, what gives? What can I let go of?

I look a mess. My hair is straggly and un-cut. I veer from over-eating to existing on adrenalin and Lucozade. My plans to create a Scandinavian-style capsule wardrobe have been shelved. There’s mould in the bathroom and I just can’t be bothered to sort it out.

We all have to cope with unexpected scenarios and juggle a stupid amount of balls in the air. Behind it all, MS looms large. My foot drop is back with a vengeance and my memory seems to be shot to pieces. I can barely remember what week we’re in – in short, normal life is on hold.

But – I’m trying. Even the simple stuff like keeping on top of the laundry is keeping me sane. If I can meal plan a few days in advance, it’s a result. And if I can get to work and put in a full day (although my nickname’s ‘Half-Shift’), it’s all good.

Yet in the back of my mind, I fear the relapse. I fought back through a horrendous bout of the ‘flu, but a relapse is different. It will pin me down and not let go. And what do I do then?

Despite it all, I am trying to remember to look on the bright side of life. There’s daffodils for sale, the sun is shining and I am still going strong-ish.

I’ll get there. Won’t I?

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Feb 22 2016
6 Comments
The Teenager

I’m So Last Century …

dinosaurSomeone asked me the other day how I get The Teenager up for school.

Easy, I said, just unplug the Wi-fi.

Sit down and wait for the piercing scream of abject agony.

It works – try it.

Anyway, as I’ve been jotting down my Master’s dissertation by hand these last few weeks, The Teenager has been streets ahead of me, organising his A Level files at the stroke of a button.

He laughs at my hand-drawn mind-maps. He chortles when he sees my scribbles, turning his ipad towards me, shining with beautiful study notes.

I take off my fingerless gloves and turn the heating on. I gently explain to him that Great Art involves Great Suffering. I am trying to channel words and images into a superb piece of writing. I could in fact be The Next Great Novelist, given half the chance.

Until I’m rudely interrupted:

‘Muuuuuuuuum. Mum. Mum. What was it like BI?’

‘Wha?’

‘D’uh. Like. Before. Internet?’ Where you deprived? Did you feel, like, sad?’

‘Ah. No. We went to a place called A Library and looked up an Encyclopedia. That’s a book.’

‘Sad,’

‘Not really.’

‘You mean, if you wanted to find something out, you had to, like, order a book? Really?’

‘Well. Yeah.’

‘Oh M’God. ‘

I am a dinosaur. The Teenager cannot comprehend a life without facts at his fingertips. I could be impressed, chuffed even. Until he sends me bizarre links of what is trending on Twitter.

Take yesterday. The Teenager should have been researching British Politics. Instead, I had a breathless text, ‘ya seen Twitter?’

‘Not yet, have you cleaned your bedroom?’

‘So funny, have you seen, OMG, hysterical.’

‘What?’

‘DamnDaniel.’

‘Oh really? A kid?’

‘S’fun, s’like real.’

I worry.

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Feb 19 2016
14 Comments
My Ramblings

MS – The Interview

forgiveMS is fairly busy these days – 100,00 of us to pester in the UK alone and millions across the world.

So it was fortuitous that it could take time out from a hectic schedule to settle down for a cosy chat:

MS: How’s things? Bad, I hope? Any more nerve pain?

Me: Funny you should say that, but yes. Don’t you ever give up?

MS: Short answer: No.

Me: Long answer?

MS: Well (long pause). It’s interesting, don’t you think? Push you just that little bit more?

Me: Really?

MS: I’ve always said – and no word of a lie – you have to be tough to live with MS. I have, haven’t I?

Me: Erm, yes?

MS: So. The way I see it, I’m doing you a favour? So, it’s bad, it’s sad, it’s painful, it’s isolating. And?

Me: What do you expect me to say? Thank you?

MS: Actually, yes. Whoah, stay seated and put that vase down. Listen. If I’m honest, it’s fun – all that freaky tiredness, making you walk funny, seeing you drop stuff. It makes me laugh. And?

Me: And what?

MS: Well. Let me think. You were diagnosed in – hang on – 2012? Yes?

Me: Yup.

MS: And what’s happened since then? Still with that bullying boss? That useless boyfriend? Still harbouring a vague notion of, and I quote, being a writer?

Me: I know what you’re doing.

MS: Good.

Me: You’ve ruined my life. I went through hell. My son was scared. I was scared. My future is uncertain.

MS: I haven’t ruined your life – you have a different job now and you love it. Your son is doing brilliantly. You’re not scared, you’re fearsome. And like anyone else on this planet, your future will always be uncertain. Deal with it.

Me: Why do you pop up so unexpectedly? Cripple me with absolute fatigue when I least expect it?

MS: Like I said, it’s fun.

Me: That’s unfair.

MS: Life is unfair. Are we done now? I’m very busy you know.

Me: I hate you.

MS: I hate you too. So we’re quits.

And with that, MS leaves.

But not quite …

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Feb 13 2016
4 Comments
Symptoms and Treatment

Ya Flu Sucks …

fluLast Tuesday in work, the boss stared at me in a somewhat odd manner.

‘Oi, Half-Shift, you here or what?’

‘Oh, er. Yes, that colour scheme looks great. White looks fab with, um, everything don’t you think?’

‘Nice, but we’re talking about the roof plans?’

I tuned back in from wherever I was. I felt … wrong.

I left work early with, ‘ta-ra Quarter-Shift’ ringing in my white-noise ears.

At home, I collapsed onto the sofa (a recurring theme) and lay there, dazed (another recurring theme).

Strangely though, I didn’t feel like eating any chocolate. It was probably then that I knew something fairly serious was up.

That night, I crawled into bed and spent hours tossing and turning, covered in sweat and having the strangest dreams. I woke up long enough to cancel two appointments and went back to bed.

When I woke again, I couldn’t get out of bed. I tried. Then tried again. Eventually, I tumbled downstairs and collapsed again on to the sofa. I was feverish and aching.

Hours later, I dressed in yesterday’s clothes and dragged myself off to a chemist. He noted my long list of symptoms and finally told me I was one of the unlucky, ‘Had the flu jab, got the flu’ peeps.

I questioned him closely:

‘And that would explain the aching joints? The insomnia? The nausea? The headaches?’

‘Yes.’

‘And also the feverish dreams?’

‘Yes.’

‘What about the complete lack of appetite? And do you think this might be a lasting symptom (ever hopeful)?’

‘Yes. And, ah, no.’

Right. Panic stations.

I haven’t felt this ill in a long, long time. I can always somehow truck on, but this, this was on a different level. I was reduced to a gibbering wreck. No longer could I hide these symptoms from The Teenager when he found me on the sofa staring at ‘Judge Rinder’ with glassy eyes.

‘Hi! I don’t seem to be able to get up off the sofa. Not MS, just the flu. Nothing to worry about.’

The Teenager patted me on my head.

‘Mum. You know, you’ve always been kinda brave by keeping your MS symptoms away from me. I know that. I’m not like, stupid. But, like, let me help.’

It was hard, but I did. He cleared away glasses and cups, put out the rubbish, tidied up the kitchen and got me juice. He fetched my unread book-club book from upstairs, fed the cat, closed the curtains.

The next two days were a blur of willing myself to get better. Flu seems to exacerbate all manner of MS symptoms, so along with the aching and feeling of being run over, I was coping with more foot drop, bonkers balance and an interesting speech slur.

And now, five days on, I’m getting slowly back to normality. Or something like it.

One thing’s for sure. This has been a terrible year so far – surely I’m due some good news?

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