9-5

Work. It’s an interesting balance.

Generally I like it. And I am very appreciative of the fact that, generally speaking, I can still manage it.

On the other hand, on bad days (or bad weeks or months), it’s an almost impossibility.

And as of last week, its become an actual impossibility as I was made redundant.

This wasn’t a shock. I worked for an organisation which supports some of the most vulnerable in our society - but, by the nature of its work, is an organisation that needs support. Quite a lot of it financial.

And there’s not a lot of that about. Or at least not where it's most needed.

The announcement of the swingeing cuts - and inevitable redundancies - that were being made was given at a roadshow* last year. So since then I’ve been trying to prepare for what this might mean for my future working life.

Thus far I’ve been lucky with work – employers have tried to understand and support me, but I know I won’t always find employment where this is the case. Or perhaps always find employment.

I’m very aware that although my professional knowledge and experience has increased vastly since I was diagnosed, so have my physical and cognitive problems.

There are many, many unfortunate things about the timing of MS, but one of the biggest is that it tends to rear its ugly head in your 20s or 30s, the age at which you’re really hoping to get your career started.

And then, as time and damage march mercilessly on, it gradually eats into your working life options. The opportunities for advancement, promotion and more income look increasingly slim.

In sitcom world being ditzy, clumsy and forgetful is amusing, charming, even endearing. In real life, you’re just a pain in the arse employment liability.

But, incredibly fortunately, an opportunity has come up that a couple of months ago I had no idea even existed.

It’s new and it’s unknown and it will involve a pretty hefty amount of adjusting, but it’s very interesting and includes the chance to use my old skills in a new way.

It’s very early days and I’m not sure how it will pan out, but it’s a chance I didn’t expect to have and I am incredibly grateful.

:: 9-5 by Dolly Parton

*I wonder what the internal thinking was behind roadshow as a name. It’s certainly logical, members of our London-based management team travel out to a number of points across the country where we have offices, programmes and projects. They are, indeed, on the road.

But to many of us the term brings to mind Radio 1 and it’s always slightly disappointing that there’s no music, whistles and/or shouty DJs involved.

Mr Brightside

Perspective. Comparisons. Sliding scales.

They’re all interesting phrases when applied to the way you view things – wealth, achievements, career, family, life. Illness.

Like a number of chronic diseases, the perceived seriousness of MS sits on shifting sands depending on who you speak to.

Perhaps you’ve dealt with reactions from people at the oh-it’s-not-so-bad end of the scale. They’ve seen someone being amazing on the Paralympics with it. Or know a friend’s mum who has had it for 25 years and still doesn’t need a walking stick. Perhaps they know someone who works fulltime and goes to the gym every other day?

On the other hand, perhaps they’re at the other end of the scale and they’ve got a pretty bleak outlook for you. Maybe they’ve cared for someone with the primary progressive form? Watched someone deteriorate before their eyes? Seen someone in the end stages of MS?

It’s entirely possible you’ve dealt with these – and many opinions in between – from the medical community.

During the summer I saw a gp I don’t normally see. He asked how I was generally and we had a general chat about MS and recent research.

He concluded by saying it would be good for his newly-diagnosed patients to see me still working and with a family.

“Because really, for you, it’s just an inconvenience,” he finished. With a reassuring smile, believing he’d said the right thing.

And, if I take a deep breath to calm down and think about that proclamation, then to some degree he was right. I’m currently not hugely debilitated. I still work, drive and most of the time I appear to function like everyone else.

To a gp, who is bound to come across far more aggressive cases, he may well believe he could describe my MS as ‘an inconvenience’ and there’s a little bit of me that sort of accepts that.

But to me an inconvenience means a flat tyre or the radiators needing bleeding or running out of teabags.

It does not mean slipping down the workforce ladder because I know I couldn’t manage it or missing most of the things healthy people take for granted or making the painful decision to not extend our family.

None of these things would I describe as ‘an inconvenience.’

So while I do recognise that I am somewhere in the middle of the health-death track bar, I think we would all like recognition of our own personal scales and a bit more consideration of what might actually count as our inconvenience.

:: Mr Brightside by The Killers

Help!

I get the train to work.

I like it. Generally it runs on time, I get a free newspaper and I can people watch (one of my favourite things.)

It also lets me wind down after a day in the office and I can think about dinner/read a book/switch off without causing a road accident.

This week it’s also let me do a little bit of thinking about employment, employers and some of the practical help I’ve needed to keep me in a job.

My working life has seen me in the private then the public and now the third sector – quite a variety, but the one common thread is that it has never been easy being at work and having MS.

Surprisingly however, some of the hardest battles I’ve had weren’t with my employers – who have generally been quite understanding and supportive, if a little bewildered by the vagaries of the condition – but with the people ostensibly put there to help.

Access to Work was a particular struggle. Great idea, rubbish execution.

Not the lovely man who came to sort me out with fancy office equipment and an impressive James Bond-esque villain’s chair. (Although still slightly disappointed by the lack of ejector seat, take note office suppliers.)

But the woman on the end of the phone being incredibly difficult about the process by which to claim transport to the office. The woman who quite clearly didn’t believe I was unwell even though I had a letter from my medical team, copies of my scans and occupational health reports. Plus I had wobbly tear voice on the phone so it must have been true.

Perhaps I just got a jaded fed-up worker, perhaps she’d seen a few scams (although the whole flippin thing is so complicated and exhausting I almost, almost, take my hat off to anyone who can scam the benefits system) perhaps I was unlucky enough to just speak to a bit of a jobsworth.

Perhaps she was secretly just trying to save me from the taxi drivers. This may have been it as the taxi/passenger conversations during the time I needed to use cabs were quite eye-opening.*

Or perhaps I should stop excusing her.

Perhaps people who deal with claimants with chronic variable illnesses could do with a bit more training and understanding about chronic variable illnesses.

That would seem to make sense.

:: Help! By The Beatles

*They ranged from the mundane – weather, potholes – to the wholly unexpected; marital guilt (theirs), how to fiddle taxi claim receipts and the fertility issues of two separate cabbies. I unwittingly became a trapped confidante in some sort of mobile secular confessional.

Suspicious minds

We had an away day at work recently.

Sigh.

The very phrase strikes fear. No matter where I've worked, they are the kind of thing that I look forward to with rather less enthusiasm than I reserve for my smear test.

It’s the ‘fun’ activities, the sneaky feeling that everyone else in the room knows a lot more than I do about their jobs, and the having to make slightly awkward small talk with scary-big-boss while simultaneously trying to work out how the flipping hot water dispenser works.

(As an aside, I’m still convinced this ability to get the hot water from the kettle type thing with its inexplicably complicated push button type opening is some sort of ongoing test within our working lives which will one day separate the truly capable from the utterly, utterly hopeless and we will be pay graded on our hot water prowess. Or lack thereof.)

And, with the addition of MS, there is the constant extra struggle to concentrate and contribute without slurring, stumbling or giving the vacant thousand yard stare. Always a good one to bring out at 3pm when scary-big-boss asks you a fundamental question which could determine your entire working future at this organisation.

Anyway, as it happened, it wasn’t bad at all. The fun activities were actually fun and we had the benefit of a truly inspirational speaker, Dave Heeley – or Blind Dave as he is known. Find out about his incredible achievements.

I also had the extra surprise of being given an award for my work. I’ll quickly add that this is not a post to brag. This is a post examining my unexpected reaction to this very pleasant surprise.

This is to wonder why my immediate thought was: “They’ve only given it me because I’m disabled and they feel sorry for me.”

And it’s not just the award. In self-doubting moments, I also wonder if I only got my job because I was helping up some kind of inclusion representation on their employee database.

When did I start becoming so suspicious? Or self-doubting? Is this what 12+ years of MS has done? How much disability prejudice have I internalised without being aware of it?

It’s a dangerous route to go down because it means that I’m not separating the ME from the MS. And yes, I’m aware that – for larger or smaller, depending on the day – MS and I do have some kind of parasitic symbiotic relationship, but I don’t want it to become the relationship that completely defines me.

So I’m trying my best to kick down the nagging voice of doubt and instead accept the recognition on face value. Perhaps it’s not pity, perhaps it’s actually that I’m not really terrible at my job.

Even though I will never work out the secret hot water pay and grading challenge.

:: Suspicious minds by Elvis Presley

I won't back down

When I left my previous role, my lovely work colleagues presented me with an amazing wordle picture. (Here’s some examples – I didn’t know the proper name when they gave it me.)

They’d collected up all the words they’d use to describe me and popped them all onto A2 and framed it as part of my farewell gift.

And they are 35 lovely, lovely words. Then right down at the bottom of the picture are two others that made me smile: strong-willed and stubborn.*

While I’ve assumed they were describing someone far better than me with the nicer words, sadly there’s no getting round those two.

Because crikey they’re right. But the thing is, I’ve yet to decide if being stubborn is a help or a hindrance.

This was brought into focus last week, this time in my current job, when I was quite clearly not well. My head was on fire, my brain had moved house and my balance had gone so completely I was stumbling around the office like Bambi on absinthe.

So to stop me injuring myself/my colleagues/the office equipment, HR stepped in and gently suggested I might like to think about going home.

This was met with a furrowed brow – although not as furrowed as I would have liked due to head-on-fire situation. 

But it did prove that I’m a bit of a nightmare for employers when it comes to my MS in the workplace – I don’t like giving up. And I don’t like it for a number of reasons:

1. Guilt
2. Deteriorating sickness absence record
3. I know how ill I can be and on that scale, I wasn’t that ill

But eventually common sense prevailed and HR won. As my colleagues chaperoned me down in the lift (ostensibly to make sure I was okay, but actually to make sure I left the building) I fell into three walls and sheepishly apologised for my ridiculous carry-on-until-the-bitter-end-ness.

I accept that I struggle with utter pig-headedness.

From my point of view, it’s what keeps me going. From their point of view, it’s what’s preventing their duty of care.

Plus all the in between messiness of me feeling a burden or making colleagues uncomfortable and them worrying about offending personal pride or accidentally making me feel I’m not wanted.

It’s unlikely to be a dilemma that’s settled soon, if at all. So in the meantime I’m just grateful to be a) working, b) working with people that care and c) not to have broken the printer.

:: I won’t back down by Tom Petty and the Heartbreakers

*I can’t decide if strong-willed is actually just a polite and faux empowering way of saying stubborn. But I think they’re probably both on there to make a point.