The first cut is the deepest

It's Hallowe'en - what better way to celebrate the night of heebie-jeebies than by dwelling on my own unnerving condition?

I've spent some time today wondering at which point over the past near-15 years I have felt most scared by my MS.

• That very first hospital admission?
• Hearing the diagnosis?
• Telling my partner he could leave if he wanted to?*
• During the decisions we made about having children?
• Leaving work and feeling useless? Restarting and struggling again?
• Struggling with poor balance, pain and gradual cognitive destruction?
• Realising that my eyesight really wasn't going to improve?
• Wondering if this moment is as well as I'm ever going to be again?

I honestly don't know. And the sad likelihood is, unless some sort of miracle cure is discovered, the most frightening is probably yet to come.

Of course, I'm fully aware this is no way to live a life - trembling in the face of what-ifs - but sometimes these thoughts are completely unavoidable.

And maybe they deserve some consideration.

Being diagnosed with an incurable, progressive disease is frightening. There's no getting away from that.

Once we're diagnosed we realise that, to a greater or lesser extent, fear is a part of our lives now. Fear of the unknown, fear of the known, fear of the damage, fear of medication, fear of progression and fear for our future.

I think we need the chance to acknowledge this dread now and again; to talk about our what scares us and rail tearfully/angrily/gin-sodden against the unfairness and randomness of a disease that was absolutely not our fault.

Sometimes we need these times of overwhelming dark to be able to fully appreciate our light: to see how remarkably we're coping, how strong we became when it was our only option and how very proud we should be of the fact that we get up every single day and carry on.

Perhaps if MS could see what it was up against, it might play a few less tricks. 

:: The first cut is the deepest by Cat Stevens

* He didn't. We got married.

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 

Changes

Had a bit of time to think about the last blog and realised that I’d forgotten one key loss.

This is what 13 years of cognitive decline will do to you. Tune in next time for another one that's suddenly come to me. (As long as I remember to write it down, obvs.)

Ah well, it’ll give me more space to witter on about it – and it is *imaginary drumroll* loss of certainty.

I realise for a lot of people with MS, this is immediately obvious – possibly thanks to an almighty felling relapse and a long time spent reading forums – but for me it took a bit longer to register.

When I was first diagnosed, I was still working as a newspaper reporter. My editor at the time was not known for his sympathy to anyone a little bit different.

It was not the environment in which to be a newly disabled woman.

But I am nothing if not stubborn – and a little self-obsessed – so I talked to him about writing a feature about my diagnosis on the basis that it a) had human interest, b) might help others and therefore position him as a caring-sharing type of guy and c) would make quite a hefty chunk of copy for the features page and stop the daily just-fill-the-page panic.

The feature was captioned by the sub editors (reporters don’t get to write their own headlines) and when I saw the printed version, there it was: “Learning to live with my uncertain future.”

At the time, I didn’t think too much about it. I was more concerned with checking that picture desk hadn’t chosen the least flattering picture of me. Just to note, this was a genuine concern, there were many.

But as I’ve ventured further down this bumpy road, I’ve realised how suitable the headline was.

And yes, I know none of us know exactly what the future holds and yes we could all get hit by the same bus tomorrow while in our collective clean underwear, but generally we can book a holiday a few months ahead and think on the balance of probabilities we’ll be okay.

Not so with MS. Oh no. Some days I’m hard pushed to tell you I’ll be okay at 3.30 when you’re asking the question at 3.25.

And this is the really key concept to get to grips with when you’re told you have MS.

Yes, there’s the fear, the endless medical appointments and the battle to keep positive when you just want to hit something. 

But over-riding all of this is the knowledge that MS could sideswipe you from nowhere at any point with any symptom causing any damage.

With zero warning, little mercy and absolutely no consideration for what you thought you had planned.

So yes, you wise subs, I am now certain about the uncertainty. 
Just goes to show that sometimes you can believe what you read in the papers.

:: Changes by David Bowie