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.

Two out of three ain't bad

Results of my MRI and recent Tec blood tests are in.

1) My lymphocytes have dropped but are currently remaining above the danger zone.
2) Some areas of damage appear to be fading.
3) There is a new, tiny, lesion in my brain.

And while I don't want the 'new', I am choosing to concentrate on the 'tiny.'

I'm not fully sure if this is laudable positive thinking or foolish denial, but whatever it is, it's getting me through the day.

:: Two out of three ain't bad by Meatloaf

Pounding

My latest MRI is done and dusted and now I'm just waiting for my neurologist to interpret the results.

It was a slightly shorter scan than I'd anticipated at around 30 minutes and I only had chance to get through a few of the tunes on the CD I'd chosen to have pumped through the (not massively effective) noise reducing headphones.

This was the first time that I'd realised that the hospital staff were also being subjected to my musical taste - I had previously assumed that they were able to just send it directly to me without having to suffer/enjoy it in their control room.

The thought of having to listen to other peoples' music choices while working - like being in an office with a radio stuck on a station you hate - made me shudder slightly.
But not too much: no moving allowed in the tube.

It's not easy to find suitable music for the scanner. Once, with an MRI on Christmas Eve, I was saved from having to make my own decision by having festive music selected for me as I slid my way in.

The staff explained they were desperately trying to help everyone enter into the festive spirit, hence the seasonal songs and the tinsel around the tiny tube. But I have never been able to listen to When Santa got stuck up the chimney in the same way again.

Sunday's scan indicated that while I had hit the jackpot with some of songs on my chosen CD, the opening bars of Wide Open Space by Mansun were a little ironic given that I was trapped motionless in tiny tube under a face cage.

But what was undoubtedly successful was this week's tune. It somehow fit the swooshing and clanging of the magnets without jarring uncomfortably.

With a carpe diem chorus, it is relentlessly and joyously anthemic - and that's what you need when you're stuck in a cylinder with just your chronic disease for company.

I'm pretty sure this particular listening scenario is not what the band had in mind when they were composing, but I'm delighted they wrote it anyway.

:: Pounding by Doves

Magnetized

Pic i: Me. Or, quite feasibly, an Ood                                 Pic ii: My damage from a previous scan
                                                                                                          (It's the patchy white areas)

Bit weird to think of an MRI as a wishing well isn't it?

A Smartie tube of claustrophobia, I understand. The clangy-bangy doughnut of doom, I get. The face-caged, emergency-buttoned, wee-inducing cell of solitude, yes.

But wishing well? Perhaps not the first thing springs to mind.

Neverthless, it's the comparison that keeps popping into my head as my next (and umpteenth) appointment with the not-quite-dream machine draws closer.

Only instead of loose change, it'll be me delivered into the darkness to make my own wishes for oooh, a good hour and a half.

And I will be wishing. Wishing that :

• that there are no new lesions found
• that Tecfidera is doing what it should
• that whatever is found impacts as little as possible on my family
• that all the research is getting us closer to a cure
• that everyone affected by this stupid disease has access to the support they need to live their lives as well as possible

Outside of the MRI we can put on a brave face and a happy smile. We can keep calm and carry on because there really is no other option.

But inside it, there's just us and some motionless time to think about why we've been put into that tube in the first place.

To consider how our lives might have been different if only we'd not woken one day to find we couldn't see out of one eye, or couldn't feel our feet or couldn't find the words we used to know.

How we've sacrificed some of the things we might have wanted, how we've reset and redrawn our parameters and how we may have lost friends, family, workplaces or opportunities.

I'm pretty sure MRIs have seen their fair share of confessions, of negotiations, of whispered prayers and of silent tears.

And I'm equally sure that they have seen quiet resolve, internal pep talks, gallows humour and stiff upper lips.

I know I have wished for just a bit more time, for just a few less symptoms, for the chance to make the best of what I have.

I've also asked for help to keep finding the strength to cope. 

I can't always see it but I know that strength is in there somewhere. And I really should learn to realise that I can be proud of that.

So wish me well. On Sunday, I will be my listening to some very loud magnets while hoping to hear the sound of my own pennies dropping.

;; Magnetized by Garbage

Black cat

I had an 18-month review with my neurologist recently. As a result of which, I am oscillating (what a great word) between two emotions.

The appointment went well – hurrah.

The appointment went well – immediately superstitious.

I did all the little tests pretty well:

• Strength, good.
• Getting up off the floor without using your hands, ungainly, but good.
• The one where they poke you with a sharp thing to see if you can feel it, good. (This has not been good for nine years. I have no idea why feeling has suddenly returned, but it has.)
• Balance and eyesight – not so good, but you can't have everything.

My neurologist declared it was the most well he'd ever seen me. And I've been seeing him for six out of my 14 diagnosed years.

I should be cartwheeling around the room, but the problem is that the last time he said I was doing pretty well, three weeks later I was in hospital with an almighty relapse.

I'm fully aware that there's not an evil link between what he says and what my immune system decides to do, but I'm more than a little superstitious about this.

Funny isn't it? We spend so much time battling bad news and dealing with the utter guff that MS throws us, that we should be utterly delighted when the news is positive.

And I am. I'm extremely grateful. I'm also quite scared.

I'm not completely sure why I have reacted with such trepidation. Was the news too good? Perhaps a part of me thinks that having a bad review will somehow keep other, much worse times, at bay. Perhaps I dare not believe it because if I do, I'll let my guard down and get walloped by the relapse stick again. 

The rational part of me knows this is all utter superstition. I'll either relapse or I won't.
But I've always been a bit of a one for touching wood or waving at magpies or looking for signs from the universe and I wonder if living with something so completely out of my control has made this tendency worse.

What this appointment has made me realise is that I'm finding it almost impossible to appreciate the happy medical news without thinking about what happened the last time I did.

However, I could well be worrying about how to deal with the good news for nothing. Just because the external signs aren't there, doesn't mean the internal progression isn't happening. So it's off for a head and spine MRI next week. Those stark grey images will be the real test.

In the meantime, I guess it's just carry on as normal. But perhaps I'll try and get as many black cats to walk across my path as possible.

Maybe that was the subconscious reason we rescued two black cats for re-homing. 

Does it work like that?

:: Black cat by Janet Jackson