Pictures of you

At the risk of stating the tediously obvious, it's been hot.

It's been so hot that my speech has melted out of my mouth in a waterfall of utter gibberish and my damaged eye has glazed over leaving half the world viewed as if through dirty perspex.

I have been mainly hiding indoors, hugging the fridge, berating my wretchedly hot foot boot and grad..ua..lly  wi....nd.....ing   d....o.....w.....n.

So it has not been the time, one would sensibly think, to head to Hyde Park surrounded by thousands of hot, sweaty bodies to see a collection of bands play upwards of eight hours in the sun with one friend and two people I barely know.

Quite an MS challenge wouldn't you say? Intense heat + failing brain + toilet queue pressures + fatigue + potential for social ineptitude.

And I can't say I wasn't worried. And I can't say I almost didn't go.
But The Cure were headlining and this was their 40th anniversary tour and their only European date. They had sound-tracked a fair bit of my youth; its optimism and upsets, its mistakes, its learning and its intensity. So I went.

And it was glorious. So glorious that I shed a few tears (undercover of darkness when people were too busy looking at the lovely Robert Smith to notice me) because I'd got there.

I'd managed it thanks to the following:

• these instant ice packs - really helpful to bring temperature down quickly
• this UV-blocking umbrella - would NOT have got through without it
• old friends - one who sent me the brolly; one who drove to London and made sure I was okay (and put up with some inane wittering fuelled by relief on the way home)
• new people - who were delightful and hilarious and warm and welcoming and managed to quieten down the "don't sound like a twat, don't sound like a twat" mantra which usually streams through my head when meeting new people - especially when I'm meeting these new people in the kind of MS-heat that would fell an elephant

It wasn't all plain sailing, there did come a point during the afternoon where I knew I was going to struggle to speak coherently and my eyesight was really failing. 

Of course, the bonus of outdoor music is you can just lie back on the grass, shut up and listen - people assume you're thoughtfully appreciating rather than silently cursing Uhthoff and his phenomenon.

However, this was a small price to pay for a day of musical delight and the sudden resurgence of youthful images, bursting like fireworks from a mighty blaze of memory.

:: Picture of you by The Cure

The metre

Social media is increasingly becoming a brown and sticky Marmite-esque topic – love all the benefits or hate all the downsides.

For positive campaigning, bringing people together, offering support and providing information it's really great.

For negative comparisons, lack of human contact, time wasting or (not that I want to reference this man) FAKE NEWS it's very worrying.

And sometimes, in life's crappier moments, it can just be a really useful thing.

Recently I was contacted by a friend via the social media megatruck that is Facebook.

Although we've only met in person a few (mainly drunken) times, I've admired this person from an electronic distance for quite a while as judging by their posts it's clear they are great. From their chosen shares and interests, I thought we may also have a fair bit in common.

Unfortunately, more in common than I had imagined, as last week I had a message out of the blue saying they'd just received an MS diagnosis.

I am saddened every time I hear of someone receiving their non-negotiable entry into this club, but this one really touched me.

After a couple of messages we arranged to speak on the phone – and we talked for quite some while.

And apart from being right about thinking they are great, what struck me most was hearing my own voice from 13 years ago coming down the line – the shock, the fear, the questions and the floundering in a vast universe of unknowns.

Thirteen years ago my diagnosis was broken to me by a gp who really didn't have a clue about MS. My friend was given the news at the foot of a hospital bed infront of two medical students.

Otherwise, for both of us, that was pretty much it. As with too many others MSers I've met, we're told we have an incurable and progressive disease and then we're left to get on with it.

Yes, I have had good experiences with nurses and neurologists over the past 13 years, but my general feeling with this (as I suspect with many other chronic conditions) is that it's actually outside the medical community that we do most of our learning - whether that's through online forums or in-person support groups.

It's the network of new friends that we've unexpectedly made, it's the bonding discussions of shared experiences, it's the personal questions that we can ask them without fear or embarrassment. 

It's the grace under pressure, the dark frontline humour and the genuine understanding that help get you through.

Building this MS world of connections and friendship – be it through social media or in person – is like creating an intricate shimmering filigree which can surround and support you.

And when you do find yourself in the non-Marmite brown and sticky stuff, this delicate web can spin itself into a pretty strong safety net.

:: The Metre by Powderfinger