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

The Ballad of Barry and Freda (Let's Do It)

I'm very lucky that one of the work projects that I'm currently involved with centres around the history and heritage of a local iconic music venue.

It's involved hours in the archives and a lot of fascinating research around the venue's performers - from poets and dramatists to singers, sports stars and comedians.

One of the many, many acts I came across while gathering information was the glorious and much-missed Victoria Wood.

So in her honour - and to stave off the November chill - here's one of her finest moments. Turn up the volume and dig out the women's mags.

:: The Ballad of Barry and Freda (Let's do it) by Victoria Wood

All the small things

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

November doesn’t have the surprising warmth of early autumn, the tingly excitement of the Christmas countdown, the new start of January or the pancakes of February.

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

So, as the traditional gatekeeper to MS crap-ness, 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 that 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. And when I get home. Hurrah. Current reads: Neil Gaiman, Angela Carter. And Viz.

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 carefully 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. Bottom. I miss you Rik.

:: All the small things by Blink-182

*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.

All together now

Both my husband and I are lucky enough to have jobs that enable us to learn a lot about our local region - it's history, culture and diversity.

Sometimes this allows us to experience very moving opportunities that we may otherwise never have had.

One of these came at the weekend when we were guests at the one-year anniversary of the unveiling of a powerful statue.

The Lions of the Great War statue honours the sacrifices made by South Asian service personnel of all faiths from the Indian subcontinent who fought for Britain in the First World War and subsequent conflicts.

It was created by a local sculptor and funded by members of a local Gurdwara who wanted to remember the men who gave their lives for a country that wasn't their own.

The remembrance service which formed part of the event was extremely moving - giving voice to a community whose part in history had previously not been visible to the wider public.

As a family, we were made to feel extremely welcome, enjoying lunch in the Gurdwara and receiving thanks for the part my hubby played in getting the statue into the public eye.

It was a wonderful event - and the sacrifices of a community we don't often hear about are truly something to reflect upon as we head towards Remembrance Sunday.

Find out more about the statue here.

:: All together now by The Farm