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.

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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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Things That Go Bump In The Night

rashThe boss has had a lot of fun this week, pointing at me, saying ‘ewwwww’ and ‘commiserating’.

Not the foot-drop, the fatigue, the red face or dropping my buttie. Nope, something spectacular and brand new.

I have broken out in a humungous rash of blisters, all over my arms and neck. And ears. Ears! I now have Spock ears.

For some bizarre reason, unknown to MS or the thyroid problems, I have erupted in icky, hot, itchy blisters. Even The Teenager is impressed, which takes some doing.

One GP appointment later, I am back on a course of steroids (meh), plus steroid cream, plus anti-histamines. In the back of my mind, I’m already calculating how much energy these tiny innocuous tablets of Prednisnolone will give me – skirting boards? Spice cupboard? Dusting?

I look awful. The boss likens me to a post-apocalyptic zombie. The blisters itch and burn. I slather steroid cream on them and pull  my sleeves down in shops.

I was back at the doctor’s today, where he posed me in several ways, taking great shots of the rash to send off to a skin expert. Then it was off to the endocrinologist for a follow-up appointment as my thyroid has gone haywire since Alemtuzumab. To be fair, I knew all about the risks and was more than willing to sign up. It just so happens I was the one in three.

Anyway, the endocrinologist told me that my thyroid was going crazy again. In the back of my mind I’m thinking, ‘hmm, weight loss?’. ‘Yes please’.

The upshot is, I have to let them know when I feel a kind of manic energy again, with palpitations. And tremors.

The joy. On the one hand, the slump of MS combined with the up of thyroid. It’s making me kind of confused.

Up? Down?

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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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