Waterloo sunset

Yes, I am relieved.
Yes, I am very pleased.

But crikey I'm exhausted.

The concern over my work circumstances has been on my mind for the past couple of months and while I've been trying to appreciate the down time, I've been mainly panicking about not working.

But as this has changed and I'm back in the world of long meetings, lots of travel and team tea-making negotiations - at least for the time being.

So I'm delighted, but I'd also forgotten how tiring it all is. I have been freelancing from home for the past year - where the most taxing part of the day had been taking my daughter to school before sitting in our dining room with a large cup of tea, writing.

I am now back carrying out work for a national charity so this inevitably involves trips to head office in London. Very early starts, very crowded trains, very busy environment.

I travelled last week, train delayed by an iced-up points failure, so I ended up hurtling across the underground, frantically checking my watch, like a metropolitan White Rabbit.

By some kind of miracle, I made it to my meeting only two minutes late - but unable to make any of the faces out around the table because the panic and heated rush had temporarily awoken my eye damage. Not the ideal way to start.

Or, as it turns out, end - as on returning home, it was clear that the trip out had also impacted my legs. Cue five days of ropey walking.

Trying to work as my disability progresses is proving to be an increasingly a difficult balance. It's really good for my self-esteem, it's beneficial to my bank balance but it's a horror for my health.

So what am I supposed to do? Not work and struggle - or work and struggle?

It's a game, isn't it.

(My route to London takes me into Marylebone Station where the loos are Monopoly themed. I rather like them although I do wonder exactly what you have to pass in the bathroom to collect £200.)

:: Waterloo sunset by The Kinks

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

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.

Ac-cent-tchu-ate the positive

I had an interesting chat with my MS nurse earlier this year.

I’ve had a few of these, but in this particular one we were discussing upgrading my medication.

Background: It took me 10 years to agree to drugs (although when I was first diagnosed, we were still in the watch-and-wait era) but I finally had such a doozie of a motor relapse just after I started my new job that I agreed to Avonex. Twenty months later and another relapse shows Avonex is not working, so it’s onto either Gilenya or Tecfidera. I have yet to decide which side effects I fancy.

This latest relapse took the bulk of my colour and normal vision in my left eye and, because it’s my eyes, remains my scariest relapse yet. I initially panicked then cried a bit and then bought an eyepatch, carried on working and braced myself to wait and hope for recovery – if ultimately only partial.

I thought I’d done quite well with accepting my situation, until my nurse suggested to me that I might be in denial.

Oh.

Initially I agreed – she’s the expert and would know better than me.

But then I did a bit of proper thinking about that particular relapse, and to be honest, a bit more about MS in general than I usually do. And these are my thoughts – bit jumbled but let’s try:

It’s possible there are bits of me that might still be in denial, even after all this time, but I’m not sure that’s the full picture.

Some of my response is simply wanting to appreciate the moments when I’m ‘well’ - or at least the well I’m at now rather than the well I was pre-MS almost 13 years ago.

Some of it is that I’ve just considered myself to be quite lucky with my relapses and recoveries – recovery has never been 100 per cent, but it’s been enough - so I just try my very best to remain as optimistic as possible while also being very mindful to not take those recoveries for granted.

I think when there has been the degree of recovery I’ve experienced – or maybe it would be better described as the ‘degree of recovery that I am very grateful for’ (perhaps not the same thing as an impressive medical recovery) then I don’t like to dwell too much on what might or might not happen.

And I know that bits of me will never recover but I’ve just got so used to the parts that don’t work that I’m mainly just happy with those that do.

So if this is denial, then I guess I’ll take it.

If it’s acceptance, I’ll take it.

If it’s the power of positive thinking, I’ll take it.

Although that very phrase makes my entire body want to cringe.

:: Ac-cent-tchu-ate the positive by Bing Crosby