Dec 02 2015
2 Comments
Emotions

Pre-Relapse Stress Syndrome

worryAnyone else have Pre-Relapse Stress Syndrome?

After a rocky road back to some sense of recovery following my third course of Alemtuzumab in September, I am once more mired in my usual emotional mode – worrying about when the next MS relapse will strike.

Considering my last relapse began next to the hot-dog-and-fries stand in Ikea, I have reason to worry.

One minute I was holding a well-thumbed Ikea catalogue in one hand and a hot-dog in the other when splat, I was catapulted into outer MS space, floating around, my legs turned to jelly, my brain to mush.

I dropped the catalogue, but managed to hold on to the hot dog as I tried to tell my mum something was very, very wrong and it had nothing to do with the ketchup pump being out of order.

I don’t know why I was so surprised. I’ve had relapses start in random places before – walking up a garden path, sitting in a cafe eating a slice of carrot cake, in the middle of a book shop.

And there’s where the stress lies; it’s the Not Knowing. You can’t make a contingency plan. It’s a bit like having an MS UFO permanently hovering around just waiting to zap you up, mess around with you and spit you back out again.

I try to get on with normal life – my usual routine provides the solid framework I cling to. If there’s something I begin to struggle with, I’m suddenly alert. Dropped a cup? Poured boiling water over my hand? Walked into a wall? (hello again).

It’s not a great way to live, but it brings me back to mindfulness I wrote about in my last blog post – taking and experiencing life as it comes. Not projecting forward, just remaining in the moment. Om.

It’s definitely harder than it sounds. The slightest thing and I’m panicking. The relief when an episode comes to nothing is immense.

As it goes, I haven’t been back to Ikea since February. The trauma is still raw.

But. I could really, really do with ordering a family-sized hot-dog meal and eating it all by myself.

I blame the thyroid meds.

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Nov 28 2015
8 Comments
Emotions

Mind Full?

balloonI don’t know about you guys, but when I wake in the morning, the first thing I do before tumbling out of bed, is mentally scan my body.

Recently I’ve been waking up with completely numb hands, so I wave them around for a bit until they return to normal.

Weeks ago, it was cramps in my legs (I didn’t wave them around – too energetic. And weird).

I use the waiting time to take a few deep breaths and compose myself for the day ahead.

Downstairs, when I fill the kettle, I think about the kettle and only the kettle, after dropping it one too many times. Ditto my mug; my mind is purely on the task at hand.

Fast-forward the day and when I walk to the car, I carefully place one foot in front of the other, ready for the inevitable foot-drop (whoops, there it goes). I am totally aware of my surroundings.

So it was interesting to read an article recently about the benefits of mindfulness for coping with MS. The exercises were spookily similar – being totally aware of waking up and getting out of bed, concentrating on every movement. Yup. Making a cup of coffee – concentrating on every movement. Yup. Walking. Yup.

Whaddya know? I’ve been effortlessly mindful since I was diagnosed. In a way.

I remember telling someone a while back that one of the ‘benefits’ (and I use this word loosely) of MS is that it concentrates the mind – on what is important and what’s not worth bothering about. I started shrugging off earlier niggles and annoyances. I started being thankful for small pleasures.

It helped that my brain went into jelly-mode and could only handle so much information at one time and when you’ve got a limited Brain Space, you just want to fill it up with good things. I did an inventory of my life and chucked out the dreck.

I began to be mindful of how I wanted to live my new life with MS. This is where writing comes in. I adore it. I live and breathe reading books, newspapers, menus, Ikea catalogues, anything. I always wanted to write but always doubted I could. MS created that space.

So I’m trying to use and build on this mindfulness. However, there are still certain things I will never be able to do, no matter how mindfully I apply myself to the task – creating the perfect sweep of eyeliner, using one of those stove-top Italian coffee pot thingies, cutting my own fringe and baking the perfect brownie (just ask The Teenager).

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Nov 25 2015
8 Comments
Work and Studying

To PhD or not PhD …

etc… that is The Question.

I have had an incredibly exciting day, visiting a Post-Graduate University event, feeling very, very old, collecting my bag, freebie pen and numerous leaflets before being ushered to various stalls.

Where I collected more pens, leaflets and a head full of ideas.

Weirdly, there were bowls of sweets and plates of biscuits at every stand, but I was polite and declined all offers, yet afterwards I wondered – was it a bizarre initiation ceremony? Had I somehow failed by refusing the tempting Jammie Dodger  or Gummi Bears at the Student Union stand?

After whizzing around the stalls (the peeps were beyond helpful and enthusiastic), I had a couple of hours break when I went home to rouse The Teenager from his pit, today being his day off school.

Long story short, I let him sleep (easier), put a wash on, sorted the recycling, had a coffee and headed out to the talk about Creative Writing PhD’s, before heading back to my Uni for a tutorial about the book ‘Omega’, which I read a couple of months back and therefore couldn’t recall a single interesting thing to say.

I waffled.

When I got home, hours after leaving the house, I offloaded the industrial quantity of bananas for The Teenager and told him off for giving the cat a dangerous dose of catnip – she’s currently racing through the house, climbing anything she can find and bouncing off the sofas, wide-eyed and lethal, much to The Teenager’s amusement.

Anyway, my journey to this point has been weird and wonderful – being sacked for having MS, contacting the inspiring author M J Hyland, who encouraged me to start blogging over three years ago, to you guys who nudged me in to publishing a book, to taking a Master’s, to now. And next? PhD?

Am I suited for academia? I don’t know the language, but I have a passion . Is that enough?

Or am I fated to spend my days measuring concrete in square metres and advising customers about the benefits of vinyl over block flooring?

Let me know what you think – and if you offer Gummi Bears as an incentive, I’m all ears …

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Nov 23 2015
4 Comments
The Teenager

Welcome To The Future

nestThe other day, The Teenager was fiddling around with his phone, sighing loudly.

Nothing new there, but this went on and on and I was trying to rewire a plug. With MS hands.

Eventually I chucked the screwdriver down and said, ‘What? What?’

He looked up. ‘Oh, I’m just writing a packing list for Uni. How many pairs of jeans do you think I’ll need? Should I sell my X-Box or keep it?’

Right. Of course.

Through gritted teeth I said, ‘You won’t be starting Uni until 2017. The end of 2017.’

‘Yeah, I know, like, durr.’

‘Sooooo? It’s like, almost two years away?’

‘Mum, would you stop saying ‘like‘, it’s like, sad, y’know?’

I sulked for a couple of minutes as I’m so grown-up, then asked him what the urgency was.

He laid his phone down gently, gave it a little stroke and turned towards me before saying, ‘Mum. I’ve read about this EmptyNesty Syndrome. Do you think perhaps you might have this? Would you like to talk about it?’

I knew it was a mistake for him to study psychology at A level.

Later on that evening, I had a think. I’ve always prided myself on encouraging The Teenager to get out into the world, explore, make mistakes, learn from them. When I was 17, I backpacked round Norway and Scotland for six weeks by myself and I wanted to pass this sense of adventure on to him.

Even though MS has been a feature of his life from the age of 11, I’ve tried my utmost to ensure it hasn’t impinged on it to any lasting degree. I hope he’s gained an appreciation of what it’s like to live with a life-changing event but also to turn it around and make the best of it.

So do I have ‘EmptyNesty Syndrome’? Two years early? I doubt it. Of course, it will be weird living on my own, in any capacity, but I’ll adjust. Life will re-shape itself to accommodate a new way of living and I will be bursting with pride as The Teenager takes his first tentative steps into adulthood.

Now that he can be left on his own for a few hours without setting fire to the house or advertising a party on Facebook, I’ve enjoyed going out with friends, expanding my horizons once more. Last week I went to an open-mic poetry session, next week I’m going to an ‘experimental evening of visual and performance art’ and am in the throes of deciding which scarf and jewellery to wear.

For both of us, life will open up in new ways; I will buy more scarves and he will finally understand that clean clothes don’t magically appear in his bedroom. Result.

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Nov 08 2015
8 Comments
Symptoms and Treatment

Silent But Deadly

sometimes you just have to pick yourself up and carry onMy MS is fairly silent. (ish)

To everyone else, just not to me.

It screams and yells in my face but is deftly hidden within my body, keeping its deviant symptoms tucked safely away, all the while wreaking havoc.

To other people, I could be a malingerer, a fantasist. A bore.

The biggest problem is in the detail; the description – try explaining in plain English what it feels like when an MS lesion hits the speech part of your brain and you can’t string a simple sentence together?

Or when your hands decide to go on strike; it’s no fun pouring a kettle of hot water over your hands instead of the coffee cup.

Then there’s the biggies – fatigue, balance, foot drop, brain fog. All perhaps innocuous to others but they add up to a walking, talking disaster area for me. Put them all in the MS Blender at once and I am a joke.

It’s why I shy away from actual real-life shopping. Too  much choice for my brain, likelihood of dropping stuff, tripping over shiny floor tiles, looking drunk, fumbling with change at the check-out. Gah. I am the person my mother warned me about.

What about the nerve pain? The constant jangling, buzzing, painful sensations, as if I’m trapped in some ghastly game of Operation, unable to fish out the funny bone. Over and over again.

MS fatigue divides my day in half – great first thing in the morning, useless when the sun goes down. Foot drop follows me wherever I go and I’ve made friends with my local cobbler – as I hand over yet another pair of flat shoes/boots to be re-soled. And as for brain fog – it’s a plague. As I’m sure I mentioned earlier. And maybe before that?

It all adds up to a pretty depressing picture. And it is.

Or could be.

I’m adapting, however slowly. I’m getting used to the curved-swerve-followed-by-the ‘whoops‘. I write endless notes to myself, to jog my battered memory. I hold the bannister when I walk downstairs and I threw out the dodgy shoes long ago. When I trip, I now do it with grace.

As MS takes a new and unexpected turn, so will I, and force it to do things it’s never had to do before, such as our current Master’s module in ‘New and Experimental Writing’.

That’ll teach it.

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