A mixtape for multiple sclerosis

A mixtape for multiple sclerosis

Wednesday, 17 January 2018

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.

Wednesday, 10 January 2018

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.

Wednesday, 3 January 2018

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.

Wednesday, 27 December 2017

Christmas wrapping

Crikey, that's another Christmas wrapped up and now we're enjoying the inbetweeny bit.

Time to spend important hours with family and friends.
Time to be thankful for what I have and to stop dwelling on what I don’t.
Time for me to wish you and yours a very peaceful and healthy new year.

Wednesday, 20 December 2017

Santa baby

Dear Father Christmas,

I do hope you’re well and gearing up for all those deliveries. Don't forget to wrap up warm and make sure your beard is properly protected.

You should have received my daughter's list by now. She's been very good this year and has done her homework without (much) nagging and cleaned her teeth beautifully.

Since we're chatting, Father C (can I call you that?), here's what I'd like for me – and every MSer – this festive season:

A cause, a cure and continual myelin repair, please. Plus genuinely feeling as well as we look. You could make a lot of people very, very happy.

But I appreciate you may not be able to deliver those in time for Christmas 2017. So, on a personal note, here's some alternative options for me this year:

1. Beautiful sky-scraper heels with hidden microchips in the bottom that automatically balance me. I'd quite like to sashay down the street again without wondering where the nearest flower bed is to cushion my fall.

2. A wearable hot water bottle/cool pack suit, which intuitively adjusts to my personal temperature needs, thereby preventing my hands/legs/everything packing up on me when the environment gets just one degree too warm or too cool.

3. This eyepatch. Styling out my eye damage.

4. A flashing badge with a changeable slogan to represent my experience on any given day. Options include: “TODAY I...said stupid stuff in a work meeting because my brain won’t function/cried in the kitchen to hide the worry from my daughter/slurred in public and had to explain the not-being-drunk thing for the 75th time/inwardly crumbled at a thoughtless comment....BUT I AM STILL GOING.”

5. A machine which allows other people to experience all my symptoms: both the ‘Bam! Gotcha!’ out the blue ones and the constant, wearing, dragging ones – emotional and physical. I'd only switch it on for a short period (unless they’d really annoyed me), but it might help them to get an insight into what I'm trying to explain.

If you could possibly see your way clear to bringing just a single gift from the above suggestions (number one! bring number one!) I would be extremely grateful.

Yours in hope,
Mildly Scrambled xx

P.S. Carrot, milk and mince pies will be in the usual place. I don't mind the crumbs, but please don't let Dasher and Prancer chew the carpet again.

Wednesday, 13 December 2017

Cold hands (Warm heart)

So, let's talk snow.
There's been four days of relentless sky-swelling deluges where we live and as a result even the most unloved streets look like Christmas cards.

So white, so pretty, so perfectly pristine.

So effing, effing cold.

Good lord, I hate the cold.
And, by logical extension, the snow.

Yes, I know that makes me sound like some sort of selfish weather Grinch who isn't thinking of excited children's hopes* for fun days of gambolling in the park with sledges! And snowballs! And cheery snowmen with wonky carrot noses and scarves stolen from indulgent grandparents.

But there's a good few MS-ey reasons why I have come to hate the white stuff that spread far wider than the travel disruption, the school closure palava or our cats whining incessantly that they don't want to go outside and relieve their distended bladders and glaring at me as if the whole sorry mess is ENTIRELY MY FAULT.

And these reasons are:
* legs seize up leading to painfully slow progress
* brain seizes up leading to, er, painfully slow progress
* speech slows down leading to garbled pleas for help, immense frustration and flapping of increasingly stiff arms like some sort of deranged penguin

The reasons why the cold causes such difficulties have been outlined in this interesting and helpful article from the MS Trust.

For the moment, at least, it looks like the cold snap is here to stay. So while it is, I'm bundled up in layers, working from home (typing in fingerless gloves like some sort of modern day Bob Cratchit) trying to regulate my temperature with a constant supply of tea.

I might have a hot bath too - although as the heat triggers Uhthoff's phenomenon and quite often causes temporary loss of vision in my damaged eye, perhaps I won't.

Argh, the impossible balancing act of multiple sclerosis.

On reflection, perhaps I'll just wait it out wrapped in hay lying prone in a cardboard box like a Blue Peter tortoise.
But with rather more gin and mince pies than our scaly televisual friends may have been allowed.

:: Cold hands (Warm heart) by Brendan Benson 

*I am actually hoping those children are having a lovely time in the snow. I did brave the garden with my daughter to build a small snowman. Then had to lie down under many blankets for a couple of hours, but it was snowtally (sorry) worth it.

Wednesday, 6 December 2017

I'm still standing

This week's blog has been written by my brilliant daughter. 
She's nine and is the most thoughtful and caring person I know – I learn something from her every day:

When I'm at home I forget that mummy has MS, I always do baking with her and we have made some amazing cakes.

This year has been good and bad - mummy had a eye patch for the start of the year but now she is on tablets to try and stop her having relapses.

She can play with me a lot more and she doesn't get as many headaches.
We can go the park and also decorate the Christmas tree together.

Last Friday, mummy was helping set up at the Christmas fair at my school and I was at guitar, when I came out of guitar she came and gave me a hug and a kiss.

The reason why I chose this song is because I have always known mummy when she has had MS. She has had a few relapses and I have been with her.

So it means that I am still standing even though she has had relapses.
I know we will be ok even though it is sad to see her ill.

:: I'm still standing by Elton John