Trip a little light fantastic

This may seem a faintly ridiculous thing to admit when there are so many bigger things to deal with in the shitshow that is MS; but I miss my heels. 

I really do.

My love affair with elevation was a long time coming - I was only allowed very sensible shoes as a child, I spent my teens in Doc Martens and my uni years in Britpop skirts and trainers.

But when I started my first foray into office wear in my early twenties, I fell head over, er, heels for the siren song of the stiletto.

I loved them all. Gravity defying heels in a huge variety of colours and designs. Row upon row of peep-toes, kitten heels, mules, wedges, court shoes, strappy sandals, ankle boots, calf boots, knee boots. All glorious, all colourful, all massively impractical.

I taught myself to balance on some insanely vertiginous styles. I made myself run on shoes that could topple stilt walkers. No heel was too high.

Then, MS.

The impact wasn't immediate, I still had a few good heel-wearing years left in me. I made it through some nights of non-stop dancing in my favourite spangly styles, I shimmied down the aisle in a pretty impressive pair and carried on pounding the office corridors in my three-inch courts.

But time, along with my MS, has since advanced. I trip over quite frequently and my balance is now too ropey to contemplate more than a few moments in my highest set and not much longer in the lower ones.

It came home to me just how much had changed last week when I managed to spectacularly - and publicly - over-balance in what I had thought were a safe pair of low, block-heeled boots.

It's rubbish. Heels make me happy - they lift not just my body, but my soul. They make me feel confident and elegant and a little bit grown-up.

And they remind me of a time when I didn't have to concentrate really, really hard to be able to wear them. Or, to be honest, do almost everything else.

I can't slip them on any more without wondering where the nearest chair/table/person/flower bed is to cushion my fall.

However, I can't bring myself to get rid of them yet, the minxy dignity-killers, so they sit lined up in my cupboards waiting for a little balance miracle.

Or even the chance to be invited to a sitting-down party. They'd be excellent at that.

:: Trip a little light fantastic by Lin-Manuel Miranda

Wheels on fire

So, where are we on the sensory relapse?

Hug - all gone. Thank fudge.

Wet clothes feeling - mostly gone. Huzzah.

Sandpaper hands - stubbornly remaining. Sigh.

But, as Meatloaf once wisely trilled, two out of three ain't bad, so probably a suitable time to celebrate.

And because I don't like making life easy for myself, I decided to mark the occasion with a bike ride.

Now this may not have seemed wise for a variety of reasons: crap balance, ropey grip, general tiredness, non-MS-related clumsyness.

But I felt the need to do something to recognise the almost-out-the-end of the relapse state, so a bike ride it was.

Off we trooped as a family to a nearby (and mostly flat) country park and saddled up.

My word, what a joy it was. I balanced, I whizzed through puddles, I didn't have to think about anything except peddling and smiling.

The absolute best part was trusting my legs to be able to get me up a (very) small hill and then freewheeling my way down the other side, laughing like a small child.

It was completely exhilarating and made me proud, post relapse, of what my body can do and how my mind has dealt with it.

:: Wheels on fire by Julie Driscoll, Brian Auger and The Trinity

You really got me

People deal with a diagnosis of MS in very different ways.

None of those ways are right or wrong, they are simply the way you choose (or are able) to deal with this breezeblock that's been dumped unceremoniously in your life.

Personally, I am an information junkie and I read as much as was available and asked as many questions as I could think of. This is possibly due to a) my previous life as a journalist and/or b) my inbuilt overwhelming nosiness.

During my reading and questioning, I came across a phrase which was repeated over and over again on forums, inspirational quote websites or in interviews. It seemed the unofficial slogan of the community.

If you have MS, I'm pretty sure you've seen it too, it's the catchy: “I have MS but MS doesn't have me!”

And yes! I thought, when I first saw it, that sounds like an ideal mantra to have, maybe I'll even have it on a t-shirt! 

It seemed positive and hopeful and a little bit fighty and I liked that. And while I was still fortunate enough to be pretty quiet on the MS front five years after diagnosis, it remained a slightly smug motto.

But then, as the relapses became more severe, took longer to recover from and left more damage, I had weeks when I was certainly more in this camp:

Sometimes, there is no point in denying that MS does have me. It had me when it took my sight, it had me when it stopped my speech and it has me when it forces me to review and adjust any number of my personal spheres.

But to live with MS means to find your own balance between the two extremes: the optimism and the despair, the denial and the knowledge, the fight and the fear.

Fifteen years since I found the first MS mantra, I still try to retain the positivity of it - but am now far more likely to temper it with the reality of the lived experience. 

:: You really got me by The Kinks

Patience of angels

Like many other MSers, I’m often greeted with a cheery “You look well.”

And although I could interpret this patience-testing phrase in different ways*, generally I like to think that it’s coming from a good place and spoken by kind people who really do want me to be well.

And so I smile and brush it off with “Thanks, good make-up” and leave it at that to avoid getting into a long, drawn-out woe-is-me conversation which will just put a damper on everyone’s day.

Because unless you’re with a fellow MSer, discussing symptoms - particularly hidden ones - can be a bit like listening to someone else’s dreams. Very vivid to you, very hard for anyone else to comprehend.

On the whole, it's not something I feel I can be totally honest about, even with friends who have been there throughout the whole process. 

Not entirely sure why - perhaps it's just my damaged state has become so normal I've stopped noticing, perhaps it's just too tedious to go over again or perhaps because actually talking about it makes it a bit too upsettingly real. For everyone.

But maybe Invisible Disabilities Week is the ideal opportunity to share my hidden damage in all its glory. (Plus this is a blog so I can’t see your I’m-sort-of-listening-but-I’m-also-thinking-about-my-dinner face.)

So this is me, looking well.

And when I relapse I look rough as hell and continue to look that way for quite a while.

Oh, hang on...maybe that’s what’s behind the “you look well.” It’s not that I look particularly good, it’s because people just can’t bring themselves to tell me how bad I look the rest of the time.

:: Patience of angels by Eddi Reader

*Including if you look well, you must actually be well and not the clanking bag of bones you claim to be. You have been lying to me and the world at large, making endless excuses for not doing stuff and sucking our sympathy dry. I am not bringing you cake/flowers/gin ever again.

Tumbling down

One of the common issues with MS is dreadful balance. Another is struggling with the impact of the cold.

Totally logical then, for the woman at the centre of one of the first documented case of the disease to also be the patron saint of ice-skaters.

Bizarre, but true. Here’s the short version of the story*:

Saint Lidwina of Schiedam was born in Holland in 1380. At fifteen, in a severe winter Lidwina was skating with friends when she fell and broke a rib and was put to bed in her family home.

She never fully recovered and became progressively more disabled and ill throughout her life. It is believed that she became paralyzed with the exception of her head and left hand.

Until her death at 53, she suffered intermittent pain, weakness of the legs and vision loss - although with some apparent periods of remission. A pattern indicating symptoms typical of MS.

After her death, she was canonised with the slightly unusual double whammy of patron saint of ice skaters and the chronically ill.

I’m sure there are some important things to draw from Lidwina’s story – by all accounts she continued to live her damaged life with grace, acceptance and thoughtfulness.

I’m also pretty grateful that I don’t live in a time without MRIs, neurologists and drugs.

But mainly I’m going to be very careful when considering any ice-skating invitations.

:: Tumbling down by Midge Ure 

*Read the longer one here.

New mistake

My balance is dismal. I have just bought a bike.
Pretty intrigued by how this is going to go.

:: New mistake by Jellyfish

Girl on fire

So I ended my last post with hope and it reminded me of a book I’ve just read.

(Note – I realise I am a 40-year-old woman responsible for a child and not an angst-ridden teenager, but I’m don’t care what you think right, I’m a bit of a fan of young adult fiction. And I’m going to slam the door and stomp off to my bedroom to read it. I didn’t ask to be born.)

In the publishing sensation that is The Hunger Games trilogy, young heroine Katniss lives in a dystopian future and enters an unthinkable fight-to-the-death live action programme framed as light entertainment.

Without giving too much away, she turns out to be quite a symbol of hope for the persecuted masses who start to see her as the figurehead for a long overdue rebellion.

But behind the scenes, the film adaptation shows the head gamesmaker and top politician, the twisted minds running The Hunger Games, having the following telling exchange:

Seneca Crane: “Hope?”

President Snow: “Hope. It is the only thing stronger than fear. A little hope is effective. A lot of hope is dangerous.”

And this, I think, is at the heart of my own fight for balance. Not the physical MS balance, that’s a bit of a losing battle, but the emotional MS balance.

Throughout this whole MS journey* I have always strived to keep hold of hope.

I think this is a positive thing and it has often served as a good pep talk for my ailing body: remember, there’s always hope, remember, there’s always hope.

But I’m also conscious that eventually – in each relapse – there will come a point when there is no room left for hope.

Relapses are a perfect example of how a little hope is effective; keeps me positive, keeps me believing, keeps me going - and a lot of hope is dangerous; what happens when reality bites and I need to face the fact I’ve lost that bit of me for good?

Good question, back to The Hunger Games.

The final sentence of that conversation is: “A spark is fine, as long as it's contained.”

Perhaps that’s an example too – keep a spark of hope, but contain it within realistic boundaries. Keep hoping until you have to stop. And then start hoping you will gain acceptance.

There’s quite a lot to read into these kids’ stories you know.

Out of interest, the tagline of The Hunger Games is: “May the odds be ever in your favour.” Let’s have a little hope that’s the case.

:: Girl on fire by Alicia Keys

*Yack, by the way, to the word journey. I can no longer say it without believing I’m on a celebrity reality show.

Reward

I was on the train to work, half reading something to do with a celebrity I’d never heard of in Metro when I couldn’t help but overhear the phone conversation of the passenger behind me.

He was speaking in that exaggeratedly hushed tone people use on trains. A tone which tries to indicate that you realise it’s annoying to virtually everyone else nearby but you have to take this call as it’s really, really important.

Anyway, I don’t know what the bulk of it was about, but I did hear his report of a trip to the dentist – which was fine, in case you were worried - he needs to go back next August but he didn’t get a sticker.

And this made me smile.

We’re so used to this rewards-based recognition of dental appointments as children, that it’s almost a universally accepted trade-off.

It also remains an irrational but slight disappointment when you don’t get the same sticky well done as an adult.

So, with my annual neurology appointment looming in two days time, I’ve been considering what might be suitable rewards to receive at the end for those of us who are a bit more scrambled.

Obviously new brains and spinal cords, the ability to continually remylienate and genuinely feeling as well as we may look would be ideal.

But in the sad absence of those, here’s my thoughts:

1. A personalised hot water bottle/cool pack, which can be adjusted to suit your personal temperature preferences. And therefore prevent hands/legs/everything packing up on you when the outside environment gets just one degree too warm or too cool.

2. High heels with fancy microchips in the bottom that automatically balance you.

3. This eyepatch 

4. A flashing badge which has a slogan to represent your particular experience on any given day. Choose from: “TODAY I wet myself in public/said stupid stuff in a meeting because my brain won’t work/cried in the kitchen to hide it from my children/fell over outside a pub and had to explain the not-being-drunk thing for the 75^th time/despaired at the benefits system/inwardly crumbled at a thoughtless comment BUT I AM STILL GOING.”

5. A machine which magically allows other people to experience all of your symptoms – both the Boo! Gotcha! Bam out the blue ones and the constant, wearing, dragging ones, both emotional and physical. Admittedly it would only be for a short period (unless they’d really annoyed you), but it may help them to gain some insight into what it is you’re trying to explain.

:: Reward by The Teardrop Explodes

The incidentals

Ack. November. Without doubt the worst month of the year. It’s cold, grey, generally exhausting and thoroughly depressing.

November doesn’t have the lovely crisp goldenness of autumn, the tingly excitement of the Christmas countdown, the potential new start of January or the pancakes of February.

It also heralds the danger period for my relapses, all of which have fallen between November and February. 

So, as the traditional gatekeeper to MS crapness, I don’t tend to greet this month with much pleasure and instead try and conserve as much of my rapidly depleting energy as possible.

Therefore, to stave off the bleakness, I’ve made a list of ten things that I could do to cheer me through the month. 

My rule for drawing up the list was any activity must involve minimal effort but bring maximum joy.

1. Hot water bottles. Oh, could there be anything more lovely than strapping a few wobbly hugs of liquid love to your torso with a blanket?

2. Yes! Yes, there could; it’s having a stack of Marmite on toast within easy reaching distance of said hot water/blanket mound.

3. And also a pot of tea.

4. If I have to leave the marmitey cocoon (which actually doesn’t sound all that pleasant when it’s described as such) to go to work then at least I can read books on the train. Hurrah.

5. Putting on high heels.* Yes. Despite my shocking balance, I LOVE the heels. I have loads of pairs from my pre and early-MS days when I could still wear them without wondering where the nearest flower bed was to cushion my fall, but I still love them, the minxy dignity-killers. So I take them out now and again, dust them down and walk around the house in them. Can’t get far, can’t manage the swagger like it used to, but rather than making me sad for what I may have lost, they still fill me with joy for what I can still do – just for slightly more limited periods.

6. Humming to myself. Particularly shoobie-doobie-doo type refrains. And not just in private.

7. Making up songs about poo with my daughter; it’s not sophisticated but it’s very funny.

8. Radio Four Extra. Drama, comedy, comforting marvellousness.

9. Visitors. As long as I can be in pyjamas, they make their own drinks and don’t mind if I stare blankly at them. I’m sorry, blame November, it makes me a rubbish host.

10. Viz. And Bottom. I am a 13-year-old boy.

:: The incidentals by Alisha’s Attic

*In the past I have tried to convince a very dear friend that high heels work much better as a mood lifter than chocolate scoffing and are a far healthier alternative. She was never sold on the idea. However, I like to think she may now wear high heels to eat chocolate and I would class that as a partial success.