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

Don't let him waste your time

I’ll be honest, I’ve been putting it off forever.

Finding many and varied reasons not to: it’ll be very dull, no-one will be interested, work is frantic, home is frantic, there’s places to go, there’s friends to see, oooh, there’s that thing on the telly, the cats need feeding, I’ve got to help with the homework, the loo needs cleaning (no one says this voluntarily, ever) I need a cup of tea.

But! No more! I now have a large cup of tea, the loo is sparkly fresh and at almost 13 years into this multiple sclerosis malarkey it’s about time I tried to write it down. Surely there’s something of use that I’ve learned since that first unknowing trip to hospital in January 2004.

Erm.

Well yes, there is quite a bit, but the vast landscape of MS means there’s an awful amount I don’t know too. Perhaps because it’s too frightening, because there’s no point in worrying about it until it happens, perhaps because it’s too overwhelming and perhaps because, quite honestly, I’d rather-not-consider-that-aspect-of-it-yet-thank-you (yes, I am looking at you bladder and bowel control, sneaking your icky little faces over the parapet.)

But if I do have any words of wisdom* they are:

• that dealing with MS may take things away from you – physically, mentally and emotionally – but it still leaves you with a choice about how you deal with those losses. And having a choice, even within diminishing parameters, is a massively powerful thing;
• that MS forces you to find out what kind of person you are and to discover that you are stronger than you think – and that’s not a bad thing to find out about yourself;
• that MS helps you, in the nicest sense, sort the wheat from the chaff – your decisions about who to spend your time with, what to spend your time on and the things that really make you happy; and
• that MS can sneak in like a really, really rubbish Milk Tray Man and instead of leaving you some iconic (although possibly slightly squashed) 80s chocolates, may steal your legs, your sight or your speech. But don’t let it take your sense of humour, your faith in yourself or your time.

If there’s anything you think you should be doing then, wherever possible, do it now. It’s taken me almost 13 years to realise that – and there are many things I haven’t done that I regret, but there’s an important lesson there and it’s one I’m now trying to live by.

:: Don’t let him waste your time – by Jarvis Cocker

*I say wisdom, I mean slightly incoherent ramblings that can get a bit passionate. Then I cry.