Billy don't be a hero

As part of my volunteering role for our local MS group, I write the quarterly newsletter.

This involves gathering stories and information which will (hopefully) be of interest to readers and means I can chat to a large number of people about their experiences of MS.

The spring edition is currently underway and I've just spoken to a delightful lady about her pregnancy story. It was a happy one and her beaming five-month-old is featuring on the front page.

One thing she said to me during our chat was that she wished she'd asked for more help during her labour. She says she feels was trying to be a bit of a hero.

And I suspect that's how many of us with MS may feel - that we're okay, that we can manage, that we don't want to make a fuss.

And there's the scary thought that we have to keep going because we need to show that we can - whether at work, at home or in relationships.

But sometimes we really should be a bit of a hero, especially when it comes to asking for help.

I rarely, if ever, take this advice. However this current relapse, coming as it does hot on the heels of my last one, means I've not had a lot of choice.

I have battled (and it has been a battle) through work since the end of December and I'm continuing to drag my way through it now. I'm just about managing.

But then something came up for one of the organisations I work for - and I knew I would have to say something.

As a steering group for this particular project, our meetings are generally at the organisation's HQ in London. This is a three-hour meeting which actually means a 10-hour round trip for me with a number of trains, tubes and quite a lot of walking. Never mind then focusing on the meeting itself.

I just couldn't see how I was going to do it. So I plucked up my courage and said something.

And I'm so glad I did. And I'm hugely grateful to the organisation for accommodating a freelancer. The meeting has now been moved to a venue 25 minutes and one train journey away from me. I am beyond relieved.

Of course, it doesn't necessarily mean I will ace the meeting with genius insights or endless creativity, but it does increase the chance that I won't fall over or gibber on the table.

So no, we shouldn't try to be heroes. But sometimes we might need to tap into our inner wonder woman and be just heroic enough to ask for help.

:: Billy don't be a hero by Paper Lace

Wishing well

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

A clangy-bangy tube of claustrophobia, I understand - although my hospital has started putting small mirrors in the machine to help you see out - and sometimes, unnervingly, your own face. 

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

Nevertheless, it's the comparison that keeps popping into my head as my next (and umpteenth) appointment with the machine is this afternoon.

Only instead of loose change, it'll be me delivered into the magnetised well to make my own wishes for oooh, a good hour or so.

And I will be wishing. Wishing that:

• that whatever is found impacts as little as possible on my family
• that the new lesions that I'm sure I have will help determine what drugs are next (while being immensely grateful those drugs are available to me)
• 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.
Maybe the enclosed tube with its teeny, tiny mirror is the best time to reflect on that.

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

:: Wishing well by Terence Trent D'Arby

Unhappy birthday

I hit 16 years with MS on Sunday.
An inauspicious occasion I'm sure you'll agree.

But to mark the passing of MS-filled 16 years I've gathered 6 things I've learned while living them.

(Strictly speaking I suppose it should be 16 things, but I'm relapsing so have cut myself some slack.)

Here goes:
- it gets harder
- you get stronger
- try not to dwell on the past
- learn to accept help
- embrace dark humour
- keep upping your eyepatch game

:: Unhappy birthday by The Smiths

History repeating

I relapsed again just before Christmas. It's been a merry festive season.

This relapse is an almost carbon copy of the one I had earlier this year. It's mainly sensory, so: MS ruddy hug, scrambled sensation from neck down, tingly hands, numb bum, tiredness. So far, so familiar.

But while my feet escaped in May, they haven't this time and instead I genuinely feel like I'm walking on broken glass.

This relapse also appears to have taken the damp clothes sensation of earlier this year and upped it to a sandpaper scraping legs sensation.

It's all completely rubbish, obvs, and makes wearing clothes hugely unpleasant. But as I need to leave the house for work/school run purposes and have no desire to affront the general public, horrible feeling clothes it is.

As a slight plus though - my legs might feel they are being attacked by sandpaper, but they also can't feel the cold. A bonus for those non-work days when I am wearing shorts in the winter. Have learned to ignore the stares.

However, this two relapses in six months tally does only mean one thing - and that is a review of my current meds. As my neurologist depressingly puts it 'the DMT is not holding things at bay'.

So it's a case of gearing myself up to face the new meds choice. I am both immensely grateful that I have some options and hugely bewildered by what those options are.

I never feel qualified to decide what is the best thing to do. I really, really need some help, support, guidance and a me from the future telling me the most effective option.

As a minor aside, I also need to stop eating all the leftover Christmas chocolates.

Things I hate about MS relapses. A grumpy pie chart:

:: History repeating by Propellerheads feat: Miss Shirley Bassey

I believe in Father Christmas

Eeeek! It’s only a week away!

Despite the fact that I'm working up until Christmas Eve, I'm trying to embrace the festive joy and celebrate the magic of Father Christmas.

While, as adults, we know that the man in the red suit is actually someone’s relative with an itchy false beard, it’s still utterly lovely to get swept up in the palpable excitement of any nearby young person.

I do wonder how long we’ve got before our daughter stops believing – she’s in her last year of primary school so I fear the worldly-wise sophisticates of secondary school may well put an end to it next Christmas. 

She's also an extremely logical young lady who has started to question quite a lot of the practicalities of the whole billions-of-presents-delivered-in-one-night concept.*

That time will inevitably come, but for the moment, it’s still this year and she’s still a firm believer.

And in a frankly frightening, confusing and unfair world, a little bit of belief that people (in red suits or not) can be good and kind is not a bad thing.

Whatever you’re up to this Christmas, whoever you’re with and whatever you believe, have a happy, healthy and peaceful one.

:: I believe in Father Christmas by Greg Lake

*Frightening how many lies we tell children while drumming into them how important it is to always tell the truth. I’m not sure how much distrust and/or damage we cause, but I’m hoping that ageing and common sense will overcome any feelings of betrayal. Either that, or all those Christmas pud sixpences are going to have to pay for some substantial sessions on the couch as an adult.

Doctorin' the Tardis

I've always been a bit of a geek.

Surround me with Terry Pratchett books, DC Comics or Judge Dredd mega-zines and put me in a Games Workshop and I feel very much at home.

But I have never felt quite so comfortable as during our family trip to Comic Con at the weekend.

We'd taken our Who-mad daughter on an early festive treat to be part of an evening audience with David Tennant and Matt Smith - arguably two of the best Doctors.

We dressed in character, we chuckled at dweeby references and we wished and wished to win a raffle prize that would get us on stage with The Doctor(s).

Sadly wishes weren't enough - and despite the massive temptation we stayed in our seats as I'm pretty sure running wildly through the packed room and launching ourselves at David and Matt would have been very much frowned upon.

But not winning didn't matter. The room was full of geeky-but-proud people doing their geeky-but-proud things and it all made for a lovely evening.

Having spent my younger years worrying about whether or not my interests were cool enough, it was so nice for my daughter to see that it is okay to like what you like.

If only I'd had a Tardis when I was 13 to be able to travel to that evening, it would have saved a lot of unnecessary fretting.

:: Doctorin' the Tardis by The Timelords (KLF)

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