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.

Do you want the truth or something beautiful?

I’ve just been on a lovely hen weekend with a small group of girlfriends.

There was drinking (afternoon tea and the stronger stuff), eyebrow raising lady chats and, of course, ridiculous willy straws.

And among the cafe stops, spa swimming and general amusement, I almost forgot that I’d been quite worried about the entire experience.

I’d been worried for one big reason: it was a weekend away with friends who know I have MS, but who don’t really KNOW I have MS.

A couple of them have seen me when I’ve been pretty rough, but the other four haven’t. And while I try to keep the optimistic ‘I’ll manage, I'll be fine’ mantra going, it's starting to occur to me that maybe I shouldn’t do this.

Because then my struggles with walking, talking or thinking wouldn’t come as such a shock. An unknown issue for my friends to suddenly try and accommodate. The unexpected spectre at the feast.

The endless balancing act of MS is as emotional as it is physical. And quite often it's one we keep to ourselves.

To live with a chronic illness means to adjust your physical activities, weigh up your energy, eke out your reserves.

But it also means finding an emotional equilibrium between the stark reality of what this disease does alongside the optimism that is being seen as increasingly important in our experience of it.

Frankly, it’s exhausting. And if we wake up like this, where does that leave us for the rest of the day? (Or the rest of the hen weekend?)

Sometimes I wonder if it would be better to just tell the truth. To do what the wonderful Caitlin Moran does and share my full visceral experience. An experience which at present, I am fully aware, is not as bad as it could be.

So should I just start to be honest about my fears? About my drugs causing night sweats, hot flushes or such an over-production of saliva and mucus that I feel like a leaking sieve most of the time? 

About the spates of repeated UTIs? About the middle-of-the-night despair? About the vomiting from fatigue? About employment panics? About my hands being too numb and shaky to competently insert tampons resulting instead in Tarantino-esque bathroom blood wreckage?

Perhaps if I was brave enough to tell the truth, then the wobbly legs from a cold walk into town or the struggle to speak after the heat of the pool would be out in the open and not a hidden issue.

Yet if I did tell the truth then we’d all have to face the havoc that this disease is wreaking. 

And that’s not attractive. Especially on a fun and celebratory weekend away.

The truth of MS isn’t pretty and that’s a very hard thing to tell – to our friends and to ourselves.

:: Do you want the truth or something beautiful? by Paloma Faith