Tag Archives: work

Live to Work? Work to Live?

workI was having a chat with the boss the other day over Hob Nobs and coffee.

After my exploding (and very icky) skin condition brought on by the sun and a healthy dose of Herr Uhthoff, he seemed quite surprised at my eagerness to return to work.

My arms are still covered in the rash despite steroids, ice packs and much lamenting.

Thinking about it, I was surprised too. I said to him, ‘isn’t it weird that I know I’m going to feel rotten again coming to work, but I still want to? Does that make me strange?’

I guess it’s something all of us with MS who work will face at some point. It’s 50/50. In work, I know I’ll be tired, I know I’ll trip over, I know I’ll garble my words and flare up in the sun, but I still do  it. Why?

Perhaps because the alternative is too frightening to contemplate.

For me, it would be all too easy to make MS into a full-time job. I’ve been there, done that, way back in the bad old days. Hospital appointments, blood tests, a fatigue management course, support groups. They all take up time. Fitting them all around a job, a Teenager, a kitten and just running the house all takes its toll.

But at the moment, work is my personal statement and a yah-boo-sucks to MS – it’s something I’m clinging on to. It gives me routine and pride in myself, and I’m planning to do it as long as possible. Of course, if I had a hunky, tall, chiselled-jawed, sensitive and caring significant other who earned shed-loads in hedge-funds, I may think differently. But I’m the only source of income in our little cottage – The Teenager needs pizza and the kitten needs her Dreamies.

So, in reality, I will still stumble out of bed and get ready for work. Some days I might want to crawl back under the duvet and hide. Believe me, it’s very, very tempting. But there’s always Hob Nobs …

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The One Where MS Becomes Normal

memoryI was feeling very smug the other day in work.

We’re currently on an outside project and the sun was blazing.

I could feel myself getting hotter and hotter as the day went on, so I disappeared at carefully-staggered intervals into the shade and called my mum for a random chat or scrolled through Twitter or simply watched the sheep stroll past (It’s Wales, we were up a mountain).

Anyway, as we were wrapping up, I remarked, ‘Oi, boss, see! I’m not as red as I usually am! Result, eh?’

He glanced my way, burst out laughing and told me to look in a mirror. I did. Oh. Bright red, round face. But! I wasn’t lying stunned on the grass, flapping my arms like a hot-weather snow angel, felled by Herr Uhthoff, Master of Heat Intolerance. I was being proactive and mature (for once), taking time out to cool down before I collapsed in a soggy heap.

This made me think. Have a I finally grown up with regards to MS? Or am I just fed up shaking my fist at it, daring it to strike me down? Perhaps I am, and MS has fully integrated itself into my life, like some kind of tapeworm, but without the added advantage of rapid weight loss.

I decided to clock just how much I now regard as normal:

  • Tripping over the bath mat every single day. Also, doorstep, dustballs and the kitten.
  • Having to hold a cup of coffee with two hands and will myself to keep hold of it.
  • Dozing off at the good bit during telly programmes and dropping my bag of chocolate buttons.
  • Mixing up my words and making people laugh, when sometimes, I’m actually telling them something quite sad.
  • Forgetting simple words and using a lot of Italian gestures to make up the shortfall (quite a natty effect, I think).
  • Fumbling with buttons and zips (my own, tsk).

I’m also applying my new-found maturity to my studies. Before, I could sit for hours thinking about different ways to say the same thing in essays. Well. I now have a handy list. For example, if I want to give an example, I could say:

  • as an illustration
  • to demonstrate
  • specifically
  • for instance

Which means my essays are now full of lots of examples, but I need to find lots of examples to use the example phrases. Confused? Me too.

Anyway, it may have taken almost four years, but I think I’m now at the stage, largely through repetition, where what was once odd and disconcerting is now, well, normal life for me. I struggle to forget what life was like B4MS, not helped by my goldfish memory.

Did I tell you what happened in work the other day?

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Will Work For Donuts …

donutA lot of my friends seem to be shimmying up the career ladder at the moment.

Me? I’ve fallen off it and will probably always struggle to get back on the first rung (dodgy grip certainly doesn’t help).

It also didn’t help that my previous employer’s definition of making ‘reasonable adjustments’ to my MS included sitting me near a window, alone, in a faraway room – the staff kitchen no less (to combat heat intolerance, natch), taking all my duties off me and launching a bitter ‘get her out by any means’ campaign.

My job now is brilliant – who wouldn’t want to work with their best friend? And as the Project Manager/Chief Nagger/Design Bod of a construction company, I’m in my element. I roll out of bed (literally), chuck some work gear on, hide unwashed hair under a hat and I’m good to go, bacon buttie in hand. Bliss, and perfect for those unpredictable MS days.

Which brings me to my next point. I now choose my working hours – they fit round appointments, fatigue, and general meh-days. Me and my friend have worked out a flexible system and it works for us, plus it helps that I am of course totally excellent at my job.

But a little part of me hankers after a ‘real’ job, with a proper career path, dress-down Fridays, babies trundled into work during maternity leave, gossip in breaks and water-cooler moments. I’ve just caught up with Poldark on telly and have no one to share my, ahem, thoughts with (anyone outside the UK, please google Aidan Turner, you’ll understand my dilemma) .

Could I ever go back to a normal job? Could I work 9 – 5? Well, no. MS demands a certain flexibility plus a pretty decent employer. Besides, even getting past the initial interview would be a trial:

Scary Interviewer: And which skills could you bring to the table?
Me: Um, I speak Norwegian? And I’m super-organised *cough*.
Scary Interviewer: That’s nice. Anything else?
Me: I’m a team-member, I have blue-sky thinking and I can think outside the box.
Scary Interviewer: And any health problems we should be aware of?
Me: Um, well, kinda, p’raps.

(stumbly exit, drown sorrows in nearest Starbucks)

So, ok, the glittering career is gone, but when you know that 80% of people with MS give up work within 15 years of diagnosis, it spurs you on, no matter what the job. For me, my job is more than a job. It may not have a distinct career path, but what could be nicer than making people’s lives better and helping them to create their dream spaces? My job satisfaction is immense.

Should it matter the career ladder has disappeared or is quality of life more important?

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On A Roll …

baconFantabulous news: my latest MRI scan shows no new lesions.

The new neuro I saw said I was experiencing ‘paroxysms’ of MS. Not heard before, so I did what most of us do and googled it when I got home.

In other news, life continues as normal:

  • My once semi-eloquent speech is still garbled and unintentionally hilarious.
  • My brand new suede boots are scuffed beyond repair after stumbling all over the place and now join the graveyard of other similarly-afflicted boots.
  • I have an ever-expanding collection of spectacular bruises from arguing with walls/bannisters/the shower.
  • I brighten up the boss’s day, every day, with my slapstick moves. Who needs a banana skin when I’m around?
  • I’m still single, and after a terrifying, tentative foray into online dating, I will probably remain so until at least 2073 (if I live to be 100).
  • I refuse am reluctant to squeeze myself into a tubi-dress and have hair extensions just to take ten years off my age. I wish.
  • I still love bacon butties in work. A habit I am attempting to break with the purchase of a Nutri-Bullet.

Anyway, apart from the usual MS gaffes, The Teenager is in the midst of GCSE Angst. Being a dutiful parent, I’ve ordered him his entire Amazon wish-list. An expensive mistake.

Along with the study notes, the revision books and the pens, he had to absolutely, totally, definitely have a Breaking Bad notebook which would of course ensure top marks in all subjects. They were all delivered yesterday and remain in a pristine package on the IKEA desk I painstakingly put together.

‘How’s your notes going?’

‘S’fine.’

‘Oh, um, lovely. Anything I can help with?’

‘Fed up wiv ‘elfy cereal, can I have Coco-Pops?’

‘Oh. Too much sugar?’

‘Never enough.’

‘Ha, that’s funny!’

‘Seriously. D’urrrr. And close the door behind you and take the kitten with you, ta?’

Oh, ok. I retreated and gathered up the laundry. And the kitten and her bizarre collection of hair bands.

So. My scan says I’m fine. I don’t feel fine. What should I do? How long do paroxysms last? Can I take a chance and buy a new pair of boots that I won’t scuff? And most importantly, will I stop speaking English with a German/Yoda-esque syntax?

‘Study, you will. Much learning achieve, aspire you can. Dark forces, encounter, you could. Succeed!’

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My Parallel Life

smileI often wonder what my parallel life would be like.

We’ve all been there; the dangerous fork in the road at diagnosis.

On the one hand, there is the weight of societal pressure – MS is ‘other’, it’s incurable and  it’s quite often progressive.

On the other hand, there is the relentless, miserable push to fight back, beat it, win the battle that always weighs heavily on our minds.

What should we do?

Conform to that first pressure?

In my case, if I’d done just that, I would have meekly accepted the year-long systematic bullying in work. I could have said, ‘thank you’ when they sacked me for having MS. Of course. I would quite possibly have taken their sage advice, ‘but surely you can live on benefits now?’ ‘We simply can’t have you here, you’re a liability, don’t you understand that?’

Fair play to them, after a meticulously well-planned and devilishly malicious campaign (by three grown adults, I mean, really?), I took my P45 and left. And quickly slid into a black pit of utter despair.

Conversely however (fair play to them) they handed me back a reason for picking myself up. I discovered I still had a single shred of dignity and decided to fight back.

Fast-forward from that awful day in October 2012, I am living a life I love. I took my employer to court and won. Not much, but just enough to take The Teenager to New York to show him where I lived when I was 19. Bizarrely, as part of their settlement, they didn’t ask for non-disclosure. Perhaps they knew I would never sink to their level and to this day, I have never publicly named their company.

Instead, I chose a different life. I kicked back against everything I was expected to be – grateful, humble, diminished. I decided to draw up mind-maps of what I wanted to achieve, despite it all. Funnily enough, I did the same when I was 17 – travel, learn languages, have kids and work out how to wear a beret with panache. I failed the last one. Badly.

So now, at the grand old age of 41 (but apparently I look six months younger), divorced, single mother and living with MS, I take absolute pride in how far I have come. In my ex-boss-led parallel life, I would be scratching around for crumbs of comfort, falling helplessly into a routine of abject nothingness.

It may not be the life I envisaged for myself (those grand plans of hosting literary ‘salons’ in a plush, velvet room in Paris, learning how to make the perfect Martini, doing something – but it’s better than the alternative).

I am not fighting back. I’m not in a war with MS. I am just deciding that what I do now should mean something.

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