Rare bird

This week I have become slightly obsessed with a way of finding out how wonderful and fascinating and individual we all are.

It tells you how our brains tick, how our relationships work, the ways in which we cope with challenges and how all these things might help us find our purpose in life. It’s been unexpectedly illuminating.

Yes, alright, I sound like an evangelist selling spaces on a navel-gazing retreat, but this is actually something we’ve been doing at work.

And it is – dum de duuuum - personality profiling.

Essentially, it’s meant to be a practical and insightful way to help us work out where we fit in the organisation as a whole, what individual characteristics we bring to the team dynamic and how we can be trusted (or not) to work on our own.

But, to be honest, it’s become a bit of a time-noodling way of swapping results and squawking at/agreeing with/secretly disputing each other’s profiles.

To find out how special you are (and you are), use this link, answer the questions truthfully and have your personality delivered to you via email with the addition of some rather delightful illustrations.

You might be surprised. Then do your family. And your friends. It’s quite addictive.

Turns out I am an advocate personality and the profiling tells me that’s pretty rare – apparently making up less than one percent of the population.

All very interesting, but like horoscopes there’s a bit of believing the nice bits and shying away from the less positive* parts.

Whatever the science behind it, it’s caused some amusement in the office and made me feel a bit special for being rare.

It’s just that sometimes, being rare isn’t good.

Rare might mean complicated, mysterious, valuable – all potentially attractive on Tinder, but no so much in the world of MS.

The disease itself is considered relatively rare with an estimated 1 in 600 people in the UK affected. This is actually less than the chance of being born with 11 fingers or toes, a chance which interestingly stands at 1 in 500.

When I was first diagnosed, I did all the scary googling of rare forms of the disease, rare symptoms, rare progressions and latterly, as I’ve headed into the DMD arena, rare reactions to drugs.

It’s not an overly reassuring world and on the whole, one I’d far rather be common in.

Because for the moment, common means known, it means reasonably well understood with the potential of management (at least in part) through drugs or physio or equipment.

To be rare in the MS world means diagnostic confusion, minimal information and even fewer options.

It means fighting an already lonely battle entirely on your own.

In an ideal world, we’d have enough funding for the research and treatments that would make us all a bit more common.

More and more common until the difference that is our disease entirely disappears.

Things that are good rare: diamonds, steak, being able to touch your nose with your tongue

Things that are bad rare: this complete and utter horror

:: Rare bird by Glen Hansard

*they may be less positive, but they are annoyingly accurate

Violently (Your words hit me)

I’m not a violent person. I’m really not.

I like peace and harmony and calm. I do my best to avoid confrontation and would happily live in a quiet place appreciating the small and gentle things.

And I’m pointing this out in my defence because recently I have been overwhelmingly tempted to twat someone with a spoon.

Twat them. Very hard. With a spoon.

This unexpected cutlery rage came about during a group meal with someone I don’t see that often.

Conversation was flowing when the person (aka spoon twatee) enquired after my health. Very polite, I thought, very kind.

Until the chat suddenly and unexpectedly landslid into how they sort of knew someone who had died from MS and spent their deteriorating years being nursed in a care home.

But who, despite this, was apparently hugely positive about things.

And this, so the speaker pronounced with a confident flourish, was absolutely crucial advice for chronically ill people and was in fact, the mind over matter key to coping.

Gaaaaaaaaaaaaaaaaaaaaaaahh.

Now I don’t dispute for a moment that our emotional attitude to our illness is of some importance.

I don’t dismiss the benefits of thinking positively. (Albeit within reason – there needs to be a dose of realism attached.)

And while I don’t use them, I’m not going to knock those positivity CDs, inspirational quotes or life-affirming mantras – whatever gets you through the day, quite honestly.

But a person without MS feeling they had the right to pontificate on how I, the person with MS, should deal with the actual ruddy MS is a bit much.

The suggestion that the secret is to just smile through the pain, the loss or the general effing arsewaffle of this disease is the one that made me itch for the spoon.*

However, as a peaceful person I didn’t want to cause a scene, so I gritted my teeth, smiled vacantly and the conversation moved on.

But it has made me wonder about the thinking behind making such a statement.

Might it be:

• not understanding
• desperately trying to say something to cover the uncomfortableness of not understanding  
• just not thinking
• liking sound of own voice
• assumptions based on impressions from ‘someone I sort of knew’ rather than taking the time to listen to how that someone is actually affected
• pseudo-scientific flimflammery cobbled together and half-remembered from something read a few years ago
• preferring to belittle or dismiss actual experiences because there’s a simpler and easier and all-round nicer-sounding option – even if it’s not true
• illness is boring, symptoms are boring and disability is boring and it would be a darn sight better for everyone if it were not seen and not heard.

The problem being, of course, as you make your way down the options, you’re heading deeper and deeper into dangerous territory.

And whether intended or not, you’re at risk of slipping into dismissal and censorship, ignorance and prejudice.

And that is enough to make even the meekest among us reach for a spoon.

:: Violently (Your words hit me) by Hue and Cry

*For anyone hoping to avoid any cutlery-based violence, this handy cut-out-and-keep guide might be of use.

My back pages

When I was at school I had the most fantastic history teacher.

He was (and hopefully still is) small, enthusiastic and quite magnificently Welsh. He loved his subject with a passion – a passion that he tried his hardest to instill in his students.

Our lessons were full of him leaping on tables, whirling around rooms, re-enacting great speeches or taking us on wind-swept trips to ruined castles.

He was absolutely fascinated by the past, but his favourite mantra was one coined not by an historian, but by a writer.

The author in question was L.P. Hartley and the mantra was the first sentence of his 1953 novel The Go-Between: “The past is a foreign country; they do things differently there.”

And this week, as I hit 14 years with MS, I’ve been thinking about my own past, my own foreign country.

And like all history, there is the bigger picture – the revolutions, the wars, the political and technological game-changers. And then there are the individual portraits – the fireside, the family and the personal progress.

My bigger picture involves research, information, access to professionals and disease modifying drugs.

Fourteen years after my diagnosis, research is discovering the potentials for new treatments, new ways of predicting prognosis and a greater understanding of the role of genetics.

The wealth of information available is at an all-time high – websites, blogs, vlogs, tweets, support groups, local branches, soap opera storylines and publications are available to anyone newly diagnosed. (Although some need to be viewed with a degree of caution.)

Access to neurologists, MS nurses and physiotherapists as well as courses on fatigue management, emotional support and dietary advice is, at least in my local area, much better than the "Oh you’ve got MS, here’s a leaflet now go away" appointment I got after diagnosis.

And since 2004, a number of new DMDs have become available. Yes, there are still issues when it comes to accessing drugs and still not enough treatments for all forms of the disease, but it’s moving forward.

My individual portrait involves my working life, family life, friendships, symptoms and the person I am versus the person I was.

My working life I’ve covered, same for my family life and friendships. Pretty sure I’ve talked at length about my symptoms and the person I was then and am now.

There have been immense changes in the 14 years since my diagnosis, making a truth of L.P. Hartley's words.

But the future is a foreign country too - and although I’m taking my Tecfidera, striving to be positive and rolling with the punches, I can only hope that these are the right travel guides.

:: My back pages by The Byrds

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

Prettiest eyes

Well, well, well – 2018.

New year, new you and all that guff.

It’s horribly predictable and not a little nauseating to see just how many newspaper features/online articles/advertising campaigns/shop fronts have the ‘new you’ mantra as their theme.

As if we’re all so utterly, unforgivably rubbish that we have to dramatically sweep away the person we were (low-key, overly sentimental, rather full of chocolate and gin) to suddenly become a shiny bright (and by inference, better) version of ourselves with leotards! And trainers! And fabulous hair!*

Of course it’s all just manufactured to make us a) feel rubbish about ourselves so we b) spend lots of cash on moisturiser/quinoa/gym membership then end up c) feeling briefly and insufferably smug about it all.

But broken down by mid-January, this combination actually only equates to feeling a) shit + b) skint + c) sick - which is not the way I want to start a new year.

Because what if we quite like the old us actually? What if they’re familiar, slightly geeky and increasingly damaged but QUITE LOVELY THANK YOU?

What if we deal with a remarkable amount of testing times - MS or otherwise - and still manage to function like a normal human being?

What if we’ve learned a lot about ourselves and realised that in the end, we’re not that bad and are, in fact, quietly great?
And we don’t really want to make a new start because we’ve come quite a long way and somehow the start seems like something of a backward step?

Or am I reading too much into this?

There are of course, excellent examples of new year, new yous – amazing healthy lifestyle transformations, people quitting jobs to follow their dreams, great new projects that help and benefit people.

But I’d just like to put in a little plea for people to remember that maybe they don’t really need a totally new them.

Perhaps all we might need is to just find the bits of the existing us that are fabulous - the kindness, the humour, the strength, the thoughtfulness - and simply share them a bit more throughout the year.

Brand new year, great old you; could become a thing.

:: Prettiest eyes by The Beautiful South

*Never gonna happen