Disabled, Moi?

StumblingI had a strange time in work today.

It was my second day back after two weeks of illness, which had left me huddled and snivelling under my favourite Blankie on The Sofa (TM), catching up with True Movies.

The Chicken Slice (with Real Chicken! as opposed to Fake Chicken!) and latte from Greggs before work helped a little.

But then a very annoying/weird/pesky thing happened.
I suddenly couldn’t speak properly, which for me, Miss Gobby, is pretty dire.

Words flew in the wrong direction. I was channelling Yoda – ‘like it, I do, what you achieved, you have.’

Then, I couldn’t walk properly, and held on to the walls at the same time as talking to the client about taps and shower accessories.

I tried to look interested, but was, thank goodness, distracted by their kids who did what kids do at Half Term and created a timely distraction in the other room (she/he took Peppa Pig off me). I left the Victoria Plumb catalogue on the table.

The weirdness continued. My feet felt loose, as if they were detached from my legs and dangling helplessly. So walking was entertaining, as I stomped around, clinging to the nearest loose electrical wire and looking like an evil puppet. ‘Oi, boss? Is this one live?’

The labourer turned up (late, meh) and I passed the entire morning planning where the boiler would go. I sketched out plans for the lights and plug sockets (yes, my job is that exciting). The labourer had a few things to do, and undertook each one with a fag and numerous sighs. I took my book of short stories out at lunchtime and ate my Mexican baguette, one beady eye on him as he wandered up and down the site, calling his Missus.

And then he left. He had ‘things to’ and he had a dodgy leg. Well. I mean. Really.

That was it.Before he fled to his car, I gave him the full ‘Stumbling’ repertoire. The Boss came out shortly after and found me wedged between a plastic chair and the back wall.

‘But…’
‘Meh…’
S’not fair…’

But then, an epiphany. Despite my lack of speech, the dodgy legs and all-round nerve pain, I was A OK. Disabled, yuk, horrible legal term. My legs did their own thing. But truly disabled? I don’t think so, but maybe, yes? Hmm.

The Boss tidied up and we got in the van to go home. He asked me to ‘pop out four painkillers, yeah? My neck’s killing and I’m going to throw up.’
And I’m the disabled one?

It’s A Hard Life, Being a Student…

studentIt truly is.

Especially the evening lectures, when The Teenager cranks up the guilt:

Can you bring me back some sweets?
Nope, there’s carrot sticks in the fridge.
Can you bring me back a drink?
Nope, there’s Council Pop in the tap.
I need help with my homework.
Welsh isn’t one of my languages.
I’m calling Childline.

And with that, he strops off upstairs and turns his music up. When I get back later, he’s slumped on the sofa chucking the carrot sticks at re-runs of Countdown.

Anyway, apart from that, it’s the essays that are my main challenge right now. I had imagined, when signing up for a Masters in Creative Writing, I would be stumbling around in artistically-put-together clothes (garments?), staring at the clouds then scribbling long words and my meaningful impressions of life in a shiny new notebook.

There were two problems with this. First, MS brain has reduced my observations to, ‘the clouds were pink. And white. And a little bit fluffy’. And, ‘the cat ran away. And then came back.’

Second, I hadn’t expected to write essays about writing essays. I had no idea there were so many theories and ‘-isms’ in writing. I am currently staring at a stack of books about ethnography as a research method. Out of the eight books, I have found five quotes, and two of them say pretty much the same thing.

The university library is a scary place, full of very young intelligent-looking people. And it’s very, very quiet. They can hear me scanning and dropping my piles of books a mile away. The machine hates me and the librarians at the desk tut.

I also have to write a portfolio of short stories by the end of December. This is going ok, but I seem to be writing very dark stuff. Ho hum. No idea why. But, as with everything over the last three years, I am nothing if not determined. My putty brain is being stretched to capacity. And I have decided to, gulp, publish the last two years of my blog as a book. At least I can then call myself a writer/author/deluded. I think.

I told The Teenager about my grand literary plans and he stared at me aghast. However, he quickly recovered and suggested ideas for new blog posts I could write about him. I interrupted him and told him the blog wasn’t fiction. He muttered something under his breath in Welsh, swiped the last scone and disappeared.

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Goodbye, Dear Meds

AmantadineGoodbye, Amantadine.

Goodbye to the zipping energy you once gave me. I will miss you.

Goodbye to all that. My house will lapse into slovenly-ness again. I will become a stranger to my pink duster, my Febreze and my Vanish stain-remover.

This thyroid medicine is crossing over with it, making me sleep in every morning then rendering me Bonkers-Stupid with energy five minutes later.

I am on a crazy rollercoaster in the twilight world between medicines. I don’t watch telly any more; the unfolding drama behind my eyes more than makes up for it.

As the new meds could suppress my immune system, I have made up some lies rules for The Teenager:

* You must take your shoes off (including rugby boots) at the door, rather than leaving them on the stairs so I can trip over them.
* Pizza is dangerous.
* You have to wash your hands immediately upon entering the house.
* Pizza could carry nasty bits.
* We shouldn’t share towels, so stop nicking mine.
* Pizza is lethal and Dominoes has gone bust.

So, on the one hand, I have a bizarre amount of energy, until the thyroid meds do their bit, but on the other, I am withdrawing from Amantadine, which used to lift me up into stratospheric delights. I am up, then down.

Like yesterday. I had a lecture that evening and was on a medicine-induced high all day, until I sat down and took out my notes. Which had mysteriously disappeared. I was jolted from my torpor by the tutor calling my name and I mumbled an incoherent reply. I jotted down some squiggles and tried to look present and correct, which was pretty difficult, as I leaned over every time he looked away from me, inching ever closer towards the floor.

I was supposed to be back at work today, but woke three minutes before the boss was due to pick me up. I called him in a panic. ‘muh, s’wake, s’am’. He told me he had got me a coffee and would drop it in before driving TO WORK. He did so with a dramatic sigh, handing it to me with a tut and I’m sure I heard him mumble ‘easy life’ under his breath.

Things will return to normal. I will yawn before midday. I will eat bacon butties again.

In the medical meantime, I will zip around, eyes staring and parents will shuffle their children away from me…. luckily it’s Hallowe’en soon.

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MS Never Sleeps

knackeredThere was me, down to no afternoon sleep, dropping off to Loose Women, no slumping over books.

I had ENERGY, the MS currency of choice.

Yup, it had to end, and boy, it did.

On the one hand, the pesky thyroid was a gift from above.

I had an obscene abundance of energy. I am ashamed to admit I cleaned round my taps with dental floss and vacuumed my house to within an inch of its life. Dust was banished.

On the other, I ended up in hospital. On Sunday, my mum took one look at me and called a taxi, ‘um my daughter can’t stop moving and shaking, no it’s not drugs, um, apart from Amantadine, but no, it’s not speed, and she won’t throw up in the cab’.

So I spent the next five hours staring at a lovely man who had no idea where he was. I cried. He was wheeled away and I stayed in limbo, with a cannula in my hand and a difficulty talking to the Doctors children who were looking after me. Plus I had an ID band around my wrist. In case I forgot who I was.

They wanted me to stay in overnight but as much as I was tempted by the gruel they serve for breakfast, I demurred. I had to get home. A nurse gave me beta blockers. Sigh. Divine. The trembling stopped and I could breathe again.

At 1.30am, I went back home and sank into my bed. Today, I had an appointment with the GP. Thyroid meds – These will help, but if you get an infection, you have to get a blood test straight away.EVEN if it’s the weekend. Meh.

I was quite happy, just checking in twice a year with the MS team. Now I have to see an endocrinologist, have more blood tests, see the GP on a fortnightly basis. But if it’s the same endocrinologist as before, I’m looking forward to hearing his Italian dulcet tones.

There has to be some recompense, no?

p.s. I had to miss book club too…

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Boing Boing

boingAn abundance of energy is an elusive pipe dream for someone with MS. A month or so ago, I would have traded my cat’s soul for just a pinch of the wonder stuff (sorry, Dora).

I should be more careful what I wish for. My thyroid has decided to go bonkers, a result of the Alemtuzumab treatment and I am bouncing off the walls like a demented bouncy ball.

I’m averaging around 4 hours of sleep a night, and most of that is disturbed, as I lie there counting the spiders on the ceiling.

However, always one to look on the bright side, I am squealing with unadulterated pleasure at being able to fit into my skinny jeans, once relegated to a dark cupboard, stained with tears. The weight loss is nothing short of a miracle and before I start the thyroid medicine, I am savouring every moment. I can’t pass a mirror or shiny surface without pausing and turning this way and that, buzzing with delight.

I have lost my appetite. No, really! I pass on the donuts, the Wotsits and even my beloved bacon butties and instead nibble on toast or Brazil nuts.

Another upside is stamina when it comes to the Masters. My third attempt at flash fiction was fabulous (IMHO). The words flowed, no editing necessary. At 3am I emailed it over to my tutor, sat back with a sigh and caught up with Jerry Springer. I am speeding through my research books for my first essay, post-it notes flying, fluorescent pen whizzing along the pages. I am a demon. I can’t keep up with myself.

The house is sparkling and my cordless vacuum is on constant recharge, just like me. I concoct marvelous meals, ready for The Teenager to diss and put to one side before he whips out a Domino’s menu and a sad face.

I can’t keep still, my legs tremble and jig endlessly. I bump in to walls, trip down the stairs and am nurturing an impressive collection of bruises.

It won’t last. It can’t. I am burning out, ready for the inevitable crash. I am scared of going back to the bad old days when I sleep in the afternoon and nod off during Downton Abbey.

I go back to the doctor on Tuesday when she will put a stop to my fun with meds. The clock starts now and in no time at all, I will be waiting for the sad ping of ready meals and ignoring the dust. Until then, I will handcraft some candles for Christmas presents, paint the walls and clean the taps with a toothpick. And dust the lampshades, organise my food cupboards, carve a pumpkin, re-pot my plants……before it’s too late.

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