Category Archives: Emotions

Mar 26 2017
14 Comments
Emotions

Ran Out of Spoons, Moved on to Forks …

spoonAccording to the Spoon Theory , people with an illness such as MS have a set amount of energy each day – spoons – and you use them up as the day goes along. Run out of spoons, run out of energy.

It’s a great analogy – simple to explain and easy for others to understand. In theory.

Try explaining why you feel like the world is ending when outwardly, you seem ab-sooo-looot-ly fine.

Last Friday is a great case in point for me. There was a Renovation/Building show in Birmingham, around a 90 minute drive from my house. An ideal work opportunity, as I’m in the building industry.

I was duly semi-presentable at 7am (!) for The Boss to pick me up. He’d helpfully inserted a mug full of extra-shot-caffeine into the cup holder and I was wide-eyed and bushy-tailed all the way up the motorway.

At the venue I got my name badge and started to wander around the 500 – 500! – stalls. I crumpled after stall 7. I got my walking stick out and The Boss took my arm for the rest of the 493 stalls. It was hot, I was off-balance, gibbering and going slightly bonkers.

I was muttering ‘bi-folds’, ‘ventilation systems’ and ‘coloured concrete’ under my breath. I took every free gift going and ended up with a decent stash of pens, notepads, mints and Gummi Bears. Plus a set of knives, bizarrely.

And then I collapsed. Fair play, it was graceful. My legs simply folded from beneath me. I had had warning signs over the last couple of weeks and dismissed them – ‘ach, it was nothing’.

Now I knew it wasn’t nothing. This was real and it scared the Gummi Bears out of me. I made it back to the car, just. And slept the whole way back to Wales, waking briefly around Monmouth, before slumping back into oblivion.

Back at my house, The Boss deposited me safely through my front door and I made straight for the sofa. I had to find some elusive spoons – there was a gathering from the writing group I attend, that evening in a local pub. I could do this.

Except, I couldn’t.

I emailed everyone my apologies through tears. A Friday night, and I was condemned to my sofa.

I had run out of spoons and believed I could move onto a trusty reserve, the forks. In real life, pre-MS, I had oodles of reserve energy (those pesky forks). They could be called upon at short notice and would pull me through any situation. But not this time. I was all out of them too.

So now I am cutlery-less. No spoons, no forks. As for knives, the closest I get is my free gift (they’re super sharp and quite lovely). My life at the moment consists of work (or similar activity) til 2pm, then Recovery until 10pm, when I go to bed and it all starts again. There’s nothing extra. It’s boring. It’s frightening.

Is this my future?

Tagged , , , , ,
Mar 17 2017
12 Comments
Emotions

Middling Along …

fineI’m going through some weird kind of middling relapse.

It hasn’t poleaxed me  – but it’s come pretty close – and it hasn’t rendered me absolutely useless for work (yup, The Boss would no doubt disagree). Although I was off work for several weeks over the Winter with a concrete, solid, horrendous relapse.

Instead, it’s calibrated itself just so:

  • Just so that I can go to work, but end up on the sofa for the rest of the day/evening.
  • Just so that I can manage to supply The Teenager with pocket money but only a passing interest in his Instagram photos of blurry figures bouncing along to some soundtrack in a dark and dingy club.
  • Just so that I can feed the cat but not take delight in the fact that she loves her £5.99 Play Tunnel from ‘Bargains R Us’, cunningly laced with a liberal spray of catnip.

Super-glued to my sofa, I have a whole lot of time to reflect, and feel ill. Part of me wishes the relapse was a full-blown beauty, blasting real life out of the water. The other part is eternally grateful I can still manage a semblance of normality.

Which comprises:

  • Bustling around when The Teenager is home from school (for four minutes, long enough to Meet ‘n’ Greet, bring him up to speed on the fridge contents and arrange a money transfer).
  • Bustling around when The Cat comes home, chastising her for staying out all night then feeding her special biscuits (a free gift from Ocado).
  • Replying to emails, using a jaunty, happy tone. Before dying slowly and feeling very sorry for myself.

I was chatting to The Boss today in the van on our way between jobs. I was trying to explain to him how it felt:

‘… you know, when you’re shattered, lying on the sofa wishing that someone could just make dinner? And the laundry was done. And the place was clean-ish?’

He paused. Then laughed. ‘My mum does my laundry and if I’m hungry, I get a Deliveroo.’

I give up …

Tagged , ,
Feb 12 2017
24 Comments
Emotions

Building A Future?

woodUntil fairly recently, I had dreams of taking a Doctorate in Creative Writing.

After the utter implausibility of finally mastering a Master’s through much trial and error (plus a decapitated mouse which appeared in my first, futile attempt at short fiction), I thought, ‘why not?’

I duly collected leaflets about available courses and being a mature student. I scanned blogs of those gone before, downloaded information and looked into funding. I even attended a Postgraduate Student Fair and found myself surrounded by kids I was old enough to parent. But. I could do this?

I can’t.

I’ve read the case studies. Bright-eyed eager (young) people with many, many awards under their belts and obscure research titles to their names. I’ve read the tiny success rates about securing funding and have looked in to alternative sources of funding, i.e. living like a pauper for six years, existing on Super-Noodles and crackers.

I would love to surrender my life to this dream over the next three years, or six years part time as I still have to work. I want to be immersed in writing and carry a notebook confidently into the nearest cafe, flick open a fresh page and jot down suitably astounding and genre-defying remarks.

I can’t.

There’s not much funding out there for a getting-on-for-mature MS blogger who fancies herself as the next Sylvia Plath.

So, I have a brand-new, shiny idea.

After much googling and sending-off-for-information, I have decided to retrain (perhaps) as … a carpenter.

Brimming with excitement, I laid out my life-altering plan to The Boss, aka My One-Time Best Friend over a coffee. After he stopped laughing, he asked why.

Well. After project-managing many building projects, I felt confident that I could carry out such an artisan craft, all by myself. And a training course would merely solidify all that I have learned these last years?

I like the word ‘artisan’ and pictured a future workshop where I would wood-turn and create dove-tails and suchlike. It would be a dusty, arty place, with deliberately mismatched chairs, a Scandinavian name and hand-thrown pottery mugs.

He mentioned that I could already cut architrave, lay floors and use a drill. I was even a passable tiler (praise indeed from The Boss, although I am an excellent tiler, if the space is small enough and I can sit down).

He queried my MS – would I be able to cope with the course? Yes – he could be my helper, if needs be. This didn’t go down so well, so I won’t be telling him when I go for the interview.

What do you guys think? Have I got enough drive to cut it in the World of Wood?

Tagged , , ,
Feb 04 2017
Leave a comment
Emotions

Bored Now …

palletsThere’s a dissertation-sized hole in my life.

After an initial frenetic and unseemly hedonistic flurry of trash telly, food, books and gossip magazines, I’m very, very bored and can’t face another jumbo-bag of Bombay Mix.

It’s time to Take Up A Hobby, especially as I will also become an Empty-Nester this year.

I want to reassure The Teenager that I have a fulfilling hobby/social life and won’t be eaten by a pack of wild dogs, at home alone, surrounded by piles of old newspapers and junk mail while he’s away at Uni.

I have many options, some more promising than others. Inspired by The Great British Pottery Throw Down on telly, I investigated clay. Sadly, I don’t have an outhouse where I can build a kiln or a pottery wheel. Undeterred, I looked into air-drying clay, but you can’t really do that much with it beyond napkin rings and small plant pots, so another idea came to a dead-end.

I looked into jewellery-making and bought a magazine all about it. I know how to use pliers and a blowtorch, a pretty good start. I just don’t know how I’d cope with fiddly beads and delicate bits what with my dodgy MS hands. So that was that.

I gave up knitting just after my diagnosis and I gifted my guitar a couple of weeks ago. My sewing machine was donated to a friend years back and crochet confuses me. However, I can make mini ghosts from toilet paper, a bit of thread and a black Sharpie but that’s seasonal.

Upcycling pallets was my next great idea. I see a lot of pallets in my line of work. What if I were to take one apart and put it back together to make seedling racks, coffee tables or outdoor sofas? After having a look on Pinterest, I realised it had already been done to death. The other thing I see a lot of at work are sewer pipes but I can’t see anyone wanting to buy a table made from the stuff, even with the ewwwww/exclusivity factor.

So I’m back to what I know a teeny-tiny bit about – writing. I shall write. I will suffer for my art, drink black coffee and pace the length of my house, anguished and deep in thought. I will produce the Next Great British/Brexit/Scottish novel.

I do have an idea in mind. It’s gathering pace and I think it could just work. So I’m going to put up all my failed-hobby bits and pieces on Gumtree and invest in some hand-ground extra-strong coffee. I’ll tell The Teenager I’ve taken up ballroom dancing, but between you and me, I’ll be writing. Watch this space …

Tagged , , ,
Jan 09 2017
14 Comments
Emotions

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 , , , , ,
← Older posts
Newer posts →