That's what we can do

I haven't mentioned my work for a little while. I think it's because I've been too taken up with my recent/lingering relapse and all its varying sensory delights.

But as I am (hopefully) coming out the other end of this one - hug has gone, sensation is almost back to what passes for normal for me, I just need my hands to start fully cooperating again - it's time for a work update.

I am currently self-employed and am working on two different projects for two different organisations. They are both very interesting.

It's not been easy carrying on working during the relapse. If I were an employee I would most likely have taken some sick leave, but I work for myself so if I don't work I don't get paid.*

Not ideal for someone with a chronic illness obviously and something I'm going to have to really consider as and when these projects come to an end.

But today I am working. I am travelling down to London for a few days for one organisation, having been at my other one on Monday. The juggling aspect of this appeals to my brain and makes me feel like I'm doing my bit to keep it active and engaged.

But the effort is taken to keep on going during this relapse has been incredible and looking back now, I'm not quite sure how I've managed it.

I think it's because I'm a) ludicrously proud, b) ridiculously stubborn and c) it's my choice - something which is really, really important when living with a disease which can strip you of them.

Work is important to me and I'm lucky that I'm currently in a position with my health where I can still choose to do it. I am aware that this may not always be the case.

I know a number of people with MS who are not currently working and who warn me that I shouldn't I tie my self-esteem up with my job.

They are absolutely right, of course and there have been times over the past few weeks where I have really struggled with what I've chosen to do.

But I've gritted my teeth and - against all reason and good sense - carried on. Because it's my choice and I'm just not ready to choose to stop quite yet.

:: That's what we can do by Deacon Blue

*I could apply for Employment Support Allowance, but the thought of the forms just makes me want to cry.

Be strong now

I've been invited by an online MS community to write a letter to my newly diagnosed self that they can share with their members.
I enjoyed doing it, so thought I'd share it here too:

Dear 2004 me,

You are stunned and worried and trying to be brave.

I am older and wiser and have a few things to share:

• You are hugely stubborn, we know this. You are pig-headed, independent and bloody-minded and sometimes this will help you. But your family and friends will want to look after you. Let them. They are scared too and need to stop feeling helpless.
• Start looking after your body more, it may not feel like it at the moment, but it's on your side and will try and repair itself in more ways than you can imagine. It will lace up its gloves and step into the ring for you time after time - the least you can do is be kind to it.
• You are still working, but you do change jobs. Twice. Perspectives change and your professional outlook has shifted too.
• I know it's on your mind; yes, you do have a child. She is beautiful.
• NEVER lose your sense of humour. It will be tested, it may get darker, but it remains a remarkably effective lifejacket.

In time you will wake up and those two letters will not be the first thing you think about.

Life will continue; you will stubbornly wear your best high heels and laugh and cry and learn along with it.

You are far, far stronger than you think and I am very proud of you.

Love 2017 me.

Ps that man you're with? The one who didn't run when you found out the news? You're right - he is the one. Marry him.

:: Be strong now by James Iha

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.