A Tiresome Inconvenience

sleepI’m just back from a mini-mini break, to Nottingham.

I tagged along with the Boss as he was taking his son back to Uni and what better way to ignore my looming Dissertation Deadline than to hitch a lift 150 miles away from my laptop?

I’d packed my little case, issued a stream of instructions to The Teenager (keep cat alive, lock door, don’t lose your key, etc) and had an hour to spare before I was to be picked up.

Then.

Aw, really?

That awful, prickling, niggling sensation. The one where you can almost physically feel the shutters roll down, one by one. MS fatigue. Out of the blue. It smacked me on the head so hard I felt sick. I had to sleep. I couldn’t move, so dozed sitting upright with Jeremy Kyle on pause (just when I was getting to the paternity test bit). I managed to bank enough minutes to look semi-decent for the journey, although my hair was a bit wild and my eyes were drooping.

When we hit the M50, I fell asleep. We stopped for coffee half-way and I was too tired to eat more than a bite of my KFC. Back in the car. More sleep.

Nottingham, took student out for a burger, then back to his accommodation. This morning, after a long sleep and a four-shot coffee, I promptly fell asleep in the car again and pretty much slept til Wales.

What can I say? Nottingham seems nice. But I’m still, after five years, struggling to accept this tiredness as a symptom in its own right. My walking was all over the place, I can take that. I can also accept the need to grasp my coffee cup extra tightly. I will probably have to get my boots re-soled again after all the tripping. But sleep? That’s the tricky one. It just seems such a waste.

As I drifted off outside Worcester, I tried to argue with my exhausted brain. Sleep would make me feel better. It’s MS-normal. It’s ok. But I’m not convincing myself.

I guess it’s the randomness of it – like all the other MS symptoms – but this one is so absolute. You completely remove yourself from life and that scares me. If you have foot-drop, you can still get out, albeit in a more comical fashion. If you drop a cup or bang around in the kitchen, you can make a joke out of it. But sleep is an alternate state and there’s nothing I can do about it.

For someone who has to stay in control, bring up a child, run a house and all that goes with it, to have to absent yourself from life and, in effect, become unconscious against your will, that’s a lot to take on board.

Tagged , , , ,

Leaping Into The Unknown

leapParalympic champion Kadeena Cox, who has MS,  won gold in cycling and athletics last year.

She has now had her UK Sport funding suspended while she takes part in ‘The Jump’, a Channel 4 winter sports programme.

They claim it is ‘due to the nature of the activities in the show’, i.e. ski jumping. Cox later tweeted, ‘B4 judging my decisions ppl should imagine living life as a ticking time bomb. MS has changed my outlook on life, so I’m gonna enjoy skiing.’

Well said, on so many levels, and how short-sighted and discriminatory for UK Sport to judge her decision rather than supporting her as a fantastic role model?

In my own way, although much more small-scale, I know exactly what Kadeena means. All of us with MS have a ticking time bomb and a lot of us want to cram in as much as we can, while we can.

Back in 2011 when MS first made itself known to me in all its hideous colours, it was the shocking obliteration of my mind that spurred me in to action. My very first proper symptom was being unable to speak properly – I was weird enough to have a lesion sitting right on the speech part of my brain, so I started speaking nonsensical English with a German grammar form, fumbling for words and generally having the lights go off, one by one.

For an aspiring writer, it was devastating. I had almost finished my second degree, in the hope of spring-boarding to a great career. Suddenly, I couldn’t string sentences together and essays proved impossible. Luckily I was given amazing support and time extensions and finally gained a 2:1. It was hell, but I did it. MS was not going to beat me.

So what’s the most ridiculous thing I could do next, given the circumstances? Start a blog. Of course. Start writing. Go after that life-long dream, which in my case was way less sports-oriented and more becoming a writer. Why not? That ticking time-bomb.

Even more ridiculously, I signed up for a Master’s in Creative Writing. Lol. It was awful, I nearly withdrew, I got support, and I’m now in the middle of typing up my dissertation.

Kadeena uses the word ‘judging’ and she could not be more right. People do judge you. If you have a disability, you should do exactly what society deems appropriate and if not, you break some unwritten protocol. I’ve been told, ‘what were you banging on about, you got a 2:1?’. Yes, but only after working ten times as hard as I would have pre-MS. I’m stubborn like that.

I’ve been told, ‘You? Take a Master’s?’ Yes. I like to challenge myself, not on the ski slopes, but on paper. It’s been a voyage of self-discovery (i.e. most of my writing is awful, but some of it is good). I’ve been pushed beyond mental endurance and it has been good for me. Horrible at the time, but in retrospect, fantastic.

So could you just stop judging us? Why not get a life instead?

Tagged , , , , ,

Food For Thought

chickenMe and The Teenager try to go out for a meal every couple of weeks.

It’s a chance to catch up, do some mom-and-son bonding and generally put the world to rights.

So yesterday, armed with a 40% off voucher, we headed to our local Harvester.

Not the most glamorous of locations but it suited The Teenager down to the ground, given he’s on a training programme for which he wolfs down 5,000 calories a day (he has an app, he counts them).

I probably eat the same amount, minus the high intensity exercise, but at least we have something in common.

Anyway, we settled down in a booth and read over the wipe-clean menu. I checked out the low-calorie options, dismissing them quickly. A burger. With fries and a huge dollop of mayo. Sorted.

I asked The Teenager what he fancied.

He looked up from the menu, snapped it shut and yelled,

‘Chicken! A whole chicken!’

‘Really?’

‘Yeah. And some ribs as a side. Just the little ones. I’m not, like, greedy. Check out my pecs mum!’

He flexed his muscles for me to admire, tapped his stats into his apps and wandered off to the salad bar, bringing back five rolls. He ate them and went back for five more.

I played with my diced beetroot and grated carrots.

Our meals arrived and he duly took a photo and uploaded it to social media before tucking in.

‘So’, I began, ‘how’s the studying going?’

‘Can’t talk. Eating.’

‘Ah. Chicken looks nice dear.’

Within five minutes, there was a plate of bones in front of him. He scooted off to refill his free refill glass for the fourth time.

‘So. How’s the studying going?’

‘Good, ta.’

‘I was thinking about trying that fasting diet. You know, to shift the pounds. What do you think? You’re the weight-loss expert.’

‘Mum. No. No way.’

‘Why not?’

‘Ok, so you take in 500 calories. You’ve got no energy. But ….’ He paused. ‘Like, d’uh, you have MS? Bit stupid, no?’

‘Ah, I see. Good point.’

‘Mum, you know when I’m a millionaire and I buy you a house, or a big shed, and I go round the world and stuff?’

‘Erm, yup?’

‘Well, I’ve worked out how to do it.’

Silicon Valley? Inventor? Rugby player?’

‘I’m going to become a … competitive eater.’

‘Right.’

‘You know, there’s loads of people on YouTube. They make a fortune. Did you see how fast I ate that chicken? Did you?’

‘Well, yes?’

‘Google it. There’s a restaurant near us. Going to start there.’

I googled it. There’s just one problem.

‘It says here you’ve got to eat everything, everything, including all the lettuce, tomato and onions. Lol.’

‘Mum, don’t say lol.’

‘You don’t eat salad? Bae.’

‘Mum, don’t say bae. Or peng or dench.’

‘Just saying. Groovy.’

‘Mum, I feel a bit ill. I need to get home before my stomach explodes.’

We left. He groaned in the car all the way home.

Until next time …

Tagged , , , ,

Is The Hurt Worth It?

wallThe Teenager found out that his dad has spent the New Year in America.

Today. Two days later.

I only heard this from The Teenager through texts. His dad has yet to call me to explain his change in circumstances – which, if social media is to believed, goes back months and may involve a permanent move.

It takes two parents to raise a child, no matter what the circumstances. Right?

Our house is furnished entirely from Gumtree bargains and cast-offs. The goodwill of friends have enabled me to paint my kitchen and given me my bed. And The Teenager’s.

For the last 17 years, planning my working day has taken on Herculean proportions; lists, more lists and bagfuls of stuff. Even working in a low-paid, dead-end job meant endless mornings of rousing The Teenager at 5.30 am and taking him to my mum’s house, handing over his school uniform and a sleepy child.

Working with a child meant low paid jobs and always being available for the latest crisis – nits, bullying, Parents Evening as the perennial lone parent. This is precisely why I took on low paid work. There was no alternative.

Meanwhile, The Teenager’s father, unencumbered with childcare, or indeed raising a child, rose swiftly through his chosen profession. The Teenager’s room at his house in London wasn’t his room, it was a spare room, his toys pushed away under the bed in plastic boxes between visits.

And now, while I have been renting a cottage for 12 years (after spending the first four years of The Teenager’s life in penury at my mother’s house) and hoping for continuity for The Teenager, I learn that not only does his father own a flat in London, and has built a house in the Carribean, he has also made plans to move to America.

I used to ignore the blinding obvious. We both stood up in court – me having fled with our son, aged 10 months. I left the house. Big mistake. He had a brilliant barrister. But it was only later I found out just how big a mistake this was.

What can I say to The Teenager? Simply, the truth, no matter how much money, no matter which exotic locations, the absolute joy of bringing him up will always usurp that. I am blessed. Me and The Teenager have been through turbulent times, but we have always got through them with love and support.

For me, that is priceless and beyond compare. I remember telling The Teenager’s father I had been diagnosed with MS, four years ago. He swore he would help out more, be there through the hard Campath times.

You guessed it, it didn’t happen, if anything, contact has became even more sporadic, until it’s petered out to nothing.

Despite it all. The upset. The rage. My focus is upon The Teenager.

It has always been and always will be.

Tagged , ,

New Year, Same Old?

awesomeYep, it’s that time of the year again when I take a notepad and scribble down some resolutions.

Looking back at the ones I’ve made over the years, I might as well just chuck my list in the bin; I still haven’t mastered the art of cooking rice and I haven’t learned how to play the guitar. I’m still single, still fat and still trying to work out what I want to do when I grow up.

Despite all this, I’m going to make some resolutions anyway just for the sheer novelty factor:

  • Experiment with wearing black clothes (slimming) and quirky jewellery (interesting).
  • Borrow my friend’s dog – exercise (gah) but a chance of bumping into a nice single man (note to self, must not be carrying a bag of dog poo).
  • Host dinner parties – with only three kitchen chairs. Perhaps supper parties? Or just skip the food and make some killer cocktails instead? Good chance to showcase black tops and big bead-y jewellery?
  • Come up with a book club choice my book club actually enjoys.
  • Be brave enough to take my laptop to the local arts cafe to work on My Novel, even though it’s not a Mac. Could be awkward. Maybe wear a big hat and dark glasses.
  • Give up any hope of becoming a poet.
  • Buy one of those big eye-shadow palettes and learn how to use it.

Hmm.

Maybe I should concentrate on what I’m grateful for, rather than my shortcomings. I may always be fat. And single. And I may never come up with a book-club-pleasing title. I might never get in to black clothes (I have a cat, she has fur).

So what do I have? A huge amount:

  • A brilliant, funny, intrepid Teenager.
  • A weird, funny cat.
  • A healthy appetite for life and all it has to offer.
  • A fantastic support network – thank you a million times.

As we put the horrendous year that has been 2016 behind us, I’m looking forward, not back.

Tagged , , , ,