Footloose

It's the six-week summer holidays.

Let the complicated jigsaw of work/childcare/clubs/activities/child-swapping with friends/rejuvenating evening gins begin.

And let the absolute exhaustion of co-ordinating all of the above while negotiating the demands of MS hit me like a ton of bricks.

Because while there's no mad-rush-out-the-door for morning registration or finding PE kits (in the cupboard? in the washing machine? on the cat?) or helping with maths homework I JUST NO LONGER UNDERSTAND - there is somehow the requirement to fill the days with fun and exciting stuff.

Days of stimulating summer plans that my daughter will remember for years to come.

Halcyon memories that she can recount to her own offspring while smiling a wistful smile and - perhaps - wiping away a tear of happiness while vowing to recreate them for her own little darlings.

Endless moments of magazine perfection which are out of the grasp of most families, never mind those of us hosting a chronic illness.

It's a summertime struggle to balance the emotional desire to offer every possible opportunity for my daughter while battling the physical demons that stamp all over the reality.

Maybe I should just stop reading articles that showcase frightfully well-turned out families enjoying adventurous outings then picnicking picturesquely. Wearing tasteful outfits and nibbling on superfood salads without spilling the vast majority down their fronts.

Because our six-weeks are way more likely to consist of getting too hot and over-tired in the local park, having to have a lie-down after taking on too much, batting stinging things away from sticky juice spillages, cramming in work, a fair few pj-and-tv-and-collapse days, sudden calls for help from friends or family and quite a lot of unhealthy treats "because it's the holidays."

 And maybe that's okay.

Maybe it's okay to just cut myself some slack for the summer and view the six weeks as a melting pot of mayhem and exhaustion and last minutes and ice-lollies.

That's not a bad memory for my daughter to have is it? A jumble of fun tied up with some help when we need it.

Plus the ruddy footboot is finally off, so that's got to be a good thing.

:: Footloose by Kenny Loggins

Invisible

It's a common conundrum among MSers - the struggle to explain to the outside world why you are feeling horrendous when "you look so well."

The hidden nature of a lot of MS symptoms - the cognitive swamp, the peculiar pains, the altered sensations, the bone-crushing fatigue - are just not that easy to get across.

We are sometime our own worst enemy - desperate to do stuff when we're able, desperate to hide our symptoms at work, desperate to protect our children from the worst.

But sometimes we need to explain the many hidden ways MS can kick us and although words are useful, they don't always get the point across as effectively as pictures

Shift.ms, a social network for MSers, has produced a really useful short film which aims to represent some hidden symptoms. Have a look.

:: Invisible by Alison Moyet

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

Connection

It's a visceral experience this week. And by that I mean:

(1) visceral, adjective (emotional, literary) - based on deep feeling and emotional reactions rather than on reason or thought

and

(2) visceral, adjective (medical, specialised) -  relating to the large organs inside the body, including the heart, stomach, lungs and intestines.

The emotional first. When we're told: "You have Multiple Sclerosis," it's like a metaphorical punch in the guts. And how we react to it, whether with shock, relief, anger or sadness, is primal.

As we progress through the relapses, the failed treatments and the endless medical appointments, we find our own ways of coping, we develop our own beliefs.

And as long as these aren't blocking out offers of help or stopping us listening to* medical advice, then that is fine - we know ourselves better than our well-meaning colleagues or once-a-year consultants.

When I relapsed on Avonex and took the decision to change medication, I looked all the available medical evidence about the alternatives on offer; but picked one based purely on a dream I'd had. Not scientific, not rational but purely and utterly emotional.

We're asked to do 'what feels right' quite a lot with MS, but there's no actual yardstick for this. Trusting our gut instinct is something we have to learn how to do.

And while we're on the subject of guts, this time the literal anatomical ones, new research has been unveiled indicating a link between gut bacteria and MS.

A team from the US has published a paper outlining how the gut-brain connection might work and their findings have implications for many neurological conditions.

I can't pretend to understand much of this, but it seems that while previous research has shown that bacteria in the gut may cause inflammation in the brain, this is the first study to report on how the cells involved in this particularly damaging inflammation work and how they might be controlled.

As with all GROUNDBREAKING MS NEWS!! a lot more needs to be done before it gets to treatment stage, but the potentials for deeper understanding of the pathways are there.

So whether emotional durability or scientific breakthroughs, it appears that having MS is a lot to do with having guts.

:: Connection by Elastica

*if not always taking. It is, after all, your choice.