Nov 03 2014
8 Comments
Symptoms and Treatment

MS Is Still Crap

evil laughI’ve spoken with a few people recently who have asked, ‘are you really so chilled about MS now?’

‘What’s happened to all the dark posts you used to write? And if you’re on something, can I have a bit?’

Hmm. Tricky. I sometimes feel that if I let the dark stuff back in, I will never leave the house. In a lot of ways my life is more fulfilling now than before. I’m far stronger (in mind, not body), I’m doing something I love with my Masters course and I am probably a kinder, more tolerant person.

However, there is definitely something in what they say. I admit, I still wake up in the wee small hours, gripped by a terrifying fear of the future. Every time I trip or stumble over my words, I am reminded that my life now will always be defined by these details. Heck, I even have plastic wineglasses.

I’ve had an angsty time at Uni, punctuated with inelegant falls and a very real dread at failing. My brain just doesn’t work the way it used to. Searching for the right word is charming in a French-language film, where the beautiful young woman pauses between cigarette puffs, but utterly soul-destroying when I struggle to find the word ‘paragraph’ at a tutorial at the age of 41 with wrinkles and an undying love of bacon butties.

So, yes, MS is still crap, in all it’s devious glory. It invades every area of my life. Currently, it’s shoving me around. Next week, perhaps the nerve pain will crank up, who knows? This afternoon I was supposed to finish my essay (deadline 5pm Wednesday). Instead, I fell asleep, in the middle of watching a very interesting discussion about which colours to wear this Winter.

My newest medical annoyance is trigger finger. Funnily enough, I noticed it in the wee small hours as I was lying in my bed pretending to be asleep in case the cat bounced on my face, yelling for an early breakfast. I flexed my hands and two fingers stayed the same, crooked and weird. I did the same thing and they stayed the same. Strange, and a little bit worrying.

So of course, I got up and googled MS and trigger finger after feeding the cat. There may be a link between the two. Or there may not be.

MS is crap and it always will be. The only thing that will change is my attitude towards it. And, the upside is, when I woke The Teenager and showed him my dodgy trigger fingers, he was actually rather impressed in a ‘ewwwwww’ kind of way. It doesn’t take much.

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Nov 02 2014
6 Comments
Symptoms and Treatment

Trippin’

no stumblingYup, I’m tripping, full on tripping.

Not the cheeky little stumbles outside a shop or the blasted foot drop by the car when I grab the handle and…..fall to the ground.

Nope. This is the time I really should wear my, ‘I’m Not Drunk, I Have MS’ t-shirt.

I’m tripping all over the place, and it’s embarrassing. I crashed into a wall (a wall) at the end of a lecture last week. Fail. I fell over in the newsagent’s, ‘blimey, these weekend papers get heavier every weekend, huh??’ Fail.

I took Halloween goodies to the nephews and tripped over a stray pebble. Meh. It’s getting less and less funny, if it ever was.

Why can’t I have an illness where I look completely normal? If there is such a thing.

I seem to have this weird, stompy walk, a bit like the models in Paris do on the catwalk, one foot overlapping the other. Difference is, they keep on going. And turn. With me, I overlap once and whayhey, I’m gone. Like Naomi Campbell without the, um, model looks.

It’s all the more desperate for me as I used to walk in heels. I know, me! High heels. I can’t speak of inches without wincing. Italian, finely crafted leather. Bee-Yoo-Tiful. Believe it or not, it has been remarked that I (used to) not only walk, I saaaaashay(ed). No longer. I wear flat boots for daytime and flat boots in the evening. In short, meh, frumpy.

I am often found staring at women in heels, with a longing bordering on the weird. D’ya see? Did Ya? Her??? In those – solemn, light a candle- heels? No?

Those days have long gone and as I take out my delicately-embroidered handkerchief in black, I regret. All those days I thought I looked absurd, ridiculous in high heeled boots, opaque tights and denim shorts, striding across that bridge in Austria.

If I could do it all again, I would.

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Oct 27 2014
2 Comments
Work and Studying

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?

Oct 24 2014
20 Comments
Work and Studying

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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Oct 23 2014
2 Comments
Symptoms and Treatment

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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