Category Archives: Daily Life

Apr 22 2015
4 Comments
Daily Life

Out of Kilter

rouletteLife is odd.

We click along in our own unique cogs, ensuring each cog fits the next one so we have  perfectly functioning life.

My cog clicks in with The Teenager’s, and my house and my work. And the kitten. And when it runs smoothly, it’s great.

The thing is, my cog seems to be out of kilter right now, jarring with each of the other ones, and it’s creating havoc.

It started small, inconspicuous, a couple of years ago. My speech went out of kilter. MS. Then my walking. MS. Then my brain. MS. The cogs clogged up, lol.

I think, ever since my diagnosis, I’ve been striving to get all these cogs working properly again. Some have, and we muddle along and it’s great. It’s a bit like oiling the daily machinery of life.

Yet, there’s one cog, possibly the largest one, which refuses to shift back into place. I feel somehow disconnected, rolling around like a ball on a roulette table, never quite finding my own space until the last minute.

I guess I haven’t quite ‘clicked’ back in to place. I used to be (I think, anyway) a great mother. I used to be a worthy colleague. I used to have  boyfriend. I used to have opportunities and possibilities.

And now? I’m that little ball, trundling along the wheel, trying to find out where I fit in.

Tagged , , ,
Apr 11 2015
4 Comments
Daily Life

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?

Tagged , , , , ,
Apr 07 2015
14 Comments
Daily Life

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?

Tagged , , , , ,
Apr 01 2015
4 Comments
Daily Life

Remission Intermission?

BronteAfter a truly terrible couple of weeks, MS seems to be going a bit easier on me. For now.

I’ve never understood the ‘remitting’ part of ‘relapsing-remitting MS’. Since 2011, there’s never been a single moment without MS – the numbness, the tingling, the fatigue, the wonky walking, the heat intolerance, etc.

My neuro explained that I had ‘highly active’ or ‘rapidly evolving’ relapsing remitting MS. Which explains a lot but thankfully, since two lots of Alemtuzumab, the relapses have slowed down to just one since 2013.

Well, this week (ok, three days, but counting … ), there’s been not so much fatigue, a decrease in dodgy walking and not as much tingling in my feet. Is this a kind of remission? I still walk into walls and bannisters, so I’m not sure if it counts, but MS seems to be semi-hibernating. However, I’m always prepared for it to bite back and surprise me. Today? Tomorrow?

In the meantime, I’m making the most of this unexpected break, even if my hands still don’t do what I expect them to – (a most embarrassing episode – long story). So I took the kitten for her second set of injections. Simple enough. I had a day off work – I imagined I would loll on the sofa, catch up on celebrity gossip, read a book, watch a film. Not a chance.

My day was full. First, the kitten. Bring cat basket into house. Open it. Kitten takes one sniff and scarpers. Pull kitten off curtain pole. Put kitten in basket. Fumble with lock. Kitten escapes. Scoop kitten out of the (empty) bath. Put her in basket. Secure the lock. Get in the car, basket on passenger seat.

Halfway there, she squeezes out a poo in the basket then squelches round in  it. Arrive at vets. Explain to the receptionist. Take a wad of kitchen towel and a bag to the disabled toilet. Release kitten who proceeds to treat the room as a carnival wall of death, careering around. And around. Attempt to clean up the poo. Detach her from the emergency cord as she swings happily around the room. Put her back in the basket.

I apologised to the vet for the awful smell but the kitten purred and pranced around the table with her poo-stained paws and tail. One injection, and she’s back in basket.

Deposit kitten at home, give her a few Dreamies, head back out to sign up Teenager for a fitness course, pop to library for essay-vital books, go to my mum’s to drop some stuff off. Back home. Shattered. Back to work tomorrow. Can’t wait.

Tagged , , , ,
Mar 26 2015
10 Comments
Daily Life

Spring Cleaning, MS-Style

springI live in a teeny-tiny old cottage with a tall teenager, a small kitten and around 25 spiders.

Not as pets or anything, they just hang around in gangs in dark corners and chuck their webs everywhere. Normally I’m quite happy to lie on my sofa, dazed with MS fatigue, tracking their progress across the ceiling and back (I’m in awe of their bustling energy).

There was a huge one in the bathroom for months who became such a fixture I’d nod and say, ‘Morning, Kevin’ every day; when The Teenager finally cottoned on, Kevin mysteriously disappeared.

Anyway, we’ve had an obscene amount of sunshine these last couple of weeks which has showed up my general lapse in housekeeping in all it’s glory ( I blame all the essays I’m writing at the moment …). Coupled with a go-faster kitten who tears around the house at top speed all day, leaving chaos wherever she goes, our house is in desperate need of a little Spring Cleaning TLC.

So today I put my plan into action. It’s simple: do only what is Absolutely Necessary. I dug out my feather duster, stumbled after the kitten who lunged for it and ran away, knocked my knee against the bannister and sat down for a nice cup of tea and a slice of Battenburg.

Suitably recovered, I knew the bath non-slip thingie needed cleaning so I filled the bath with cold water, sloshed a bit of bleach in it and left it to marinade for a couple of hours. Simple.

I flicked the duster around the whole house, chased by the pesky kitten and numerous spiders. I used a tumble-dryer sheet (cheating, but it works) to dust the books and ornaments and straightened rugs and cushions. Then I stopped for an espresso and another slice of cake.

Ok, next thing. Tidied my desk. Re-arranged my Sharpies. Shuffled a few piles of papers. Done.

Got the cordless vacuum out – bought after endless bouts of tripping over the cord of my old one. Shoved it round a little, battery ran out, put it on to re-charge. Sit down.

Give up.

It’s fine. I’ve fitted low-wattage bulbs to ensure I see less dust. We’re definitely going to rock the boho-chic-tiny-cottage look for a little while longer. If I have the energy, I’ll fluff the duvets. Making sure the kitten isn’t nestling in the middle of it first, chewing on my feather duster.

Tagged , , ,
← Older posts
Newer posts →