Monthly Archives: April 2015

Apr 11 2015
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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?

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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?

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Apr 03 2015
18 Comments
My Ramblings

The Many Faces of MS

duckAfter our interminable wait in MS Limboland, after our diagnosis, after our anguish of coming to terms with MS, just how do we show our MS to the world?

I’m only wondering as I’ve gone from one extreme to the other in the space of a month.

Four weeks ago I was catapulted back to square one, with the worst symptoms I’ve had since the very beginning of MS. I was rigid with panic, terrified as to what it could mean for me and The Teenager.

I was pretty much unable to function at all. In the last few days though, I’m suddenly on much more of an even keel.

It goes without saying , my despised eternal enemies – foot drop, heat-intolerance, fatigue, not-working hands are still here and no doubt always will be.

Who’s idea was it to buy the kitten two ‘fun play-tunnels’? She probably has more fun watching me trip over them than running through the pesky things and batting the tied-on plastic balls at each ends. She strategically shifts their locations around the room, so when I come back from work, she sits back and waits for the hilarity to begin before rushing to her food bowl and looking at me with huge, pleading eyes

So if I’m confused by this rapid turnaround of symptoms, how do we explain this to other people? And how do we come to terms with the fact that it might not last. Or maybe it might. For a while longer. Or maybe not.

I’m sure my friends and family are realising that I’m just not the same person they used to know. One day I’m fine. The next I’m not. Essentially, MS is always, always at the forefront, no matter how well it’s behaving itself. I try to shove it down, squash it into submission but it’s forever seeping through the seams of my life, colouring everything it touches.

I think it’s got to the point that whenever I meet up with someone, the first thing we have to do is establish where I am on the MS-Scale. After that, what should I do? Brush it under the carpet? Dismiss the hateful symptoms with a wry laugh? Or bore them rigid with dark fears?

There is no easy answer. I worry that ‘what’s she banging on about (again), she looks fine‘ is lingering in their minds; I run a house, I’m raising a Teenager single-handedly, I’m taking a Master’s, I work. I can’t be that bad?

I wish people could see the network of mechanisms behind the scenes – the forward-planning, the endless lists, the time-management. It’s exhausting. I’m like one of those ducks – calm on the surface, gliding along, but with little flappy feet frantically pedalling, unseen.

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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.

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