Page 44 of Take a Moment

Sasha wipes her eyes with a tissue I hand her and I notice that her expression has turned thoughtful.

‘Lex… if I ask you a question, will you be honest with me?’

‘Depends what the question is—’ I give myself a mental kick up the arse. ‘Sorry, sorry. Yes, I’ll be honest.’

‘Thank you.’ Sasha chooses her words carefully as she unwraps a mini Toblerone. ‘I want to understand how things are with you. If you don’t tell me, I make it up myself, then I get it wrong and annoy you.’

I realise Sasha’s right. Trying to pretend nothing’s wrong leaves her in an impossible situation.

‘What I want to know,’ she continues, ‘is how your MS is affecting you now; and what support you need. I want to help you.’

I take a moment to digest her question. ‘I suppose it’s natural for you to want to support me, but only if that “support” doesn’t start to take over or smother me.’

‘Lex, you only seem to see two polar opposites: totally able-bodied or totally disabled.’

I flinch as she says this.

‘Sorry.’ She picks up on my discomfort. ‘What I mean is, you’re neither. There are so many shades of grey along that scale. Let’s work out your current “Lex status” and work with that. You need an approach that’s tailored perfectly for you – then I can support you with that.’

Sasha’s words erupt inside me like a volcano of comprehension. She’s exactly right. I’ve been avoiding things I might actually be able to do, and covering things up when I’m struggling. I need to find the right balance. This is something I can work with. It’s a problem to solve and I can do that without it having to be an emotional thing.

‘You know, I could kiss you, Sash.’

‘Maybe best not, given recent events.’ She giggles.

‘Hmm… yeah, good point.’ I waggle my eyebrows at her faux-lecherously. ‘But seriously, you’ve just made so much sense. I’ll grab a pen and we can work through it.’

Padding through to the small desk in my bedroom, I retrieve some stationery, then return to the sofa.

‘OK, let’s do this.’ Sasha dabs at the remaining dampness round her eyes with a tissue. ‘How do you want to start?’

‘I think I’ll answer your questions, then we can use that information to start to build a framework and approach.’

‘Said like a true project manager. I’ll be note-taker.’

‘Deal.’ I hand her the notebook and pen. ‘OK… how my MS is affecting me… it’s not nearly as bad as when I had my relapse. Back then, I struggled to get out of bed in the morning. It took me two hours just to get ready for a hospital appointment because I kept having to stop and rest. I had to sit down in the shower. It was hellish.’

‘And now?’ Sasha scribbles away on the notepad.

I take a moment to really tune in to how things have been recently. ‘Now… it’s like a perma-exhaustion. A bit like walking around with weights strapped to my body. Nothing is as easy as it used to be – stairs and hills are my nemesis.’

‘Anything else?’

‘I get this tingling in my hands and feet. Turns out that’s a symptom – I just thought I had poor circulation. My balance, coordination, spatial judgement… they’re all off, and I actually fell in front of my colleagues a few weeks back when my foot malfunctioned. That was pretty humiliating.’

‘Oh, Lex, you never said.’ Sasha looks gutted for me.

‘Didn’t seem much point.’ I shrug. ‘Wasn’t like you could do anything to change it.’

‘Maybe not, but this is what I’m talking about. It’s not just about you being physically capable, you also need emotional support. Sharing that with me at the time might have helped you process how you felt about it.’

‘I suppose.’ I know she’s right because I gave myself a bit of a hard time in the days following that incident, but I’m not going to offer that up too willingly. ‘So that’s mainly it. There are moments when I struggle with my concentration, but I generally have a clearer head. It’s not like the “cog-fog” I experienced before. That’s a positive thing because that made it very hard to concentrate at work.’

‘That’s great. So what support do you need? How do I get you to be a bit kinder to yourself? How do we have fun together without going overboard? Or, on the flip side, how do I make sure I don’t become the “fun police”? And what about alcohol? Do you drink? Not drink? If you don’t, should I not either? Or will that annoy you?’

‘Whoa! Slow down,’ I tease her in an attempt to hide the fact that I’m now the one feeling overwhelmed.

‘All valid questions though, right?’

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