A mixtape for multiple sclerosis

A mixtape for multiple sclerosis

Wednesday 24 April 2019

Keep on the sunny side

It's been nice, hasn't it, this unexpected sunny weather?

Not for all us, I appreciate. Not for anyone with heat intolerance or anyone stuck working over the Bank Holiday weekend while silently weeping at the loveliness of the outside world, but on the whole it's been really nice.

We've dipped back to normal April temperatures/rain now, but for four glorious days, the weather gave us a glimpse of summer promise and forced us to make the most of it.

And it was my concerted efforts at grabbing the fleeting moments of sunshiney joy that made me consider how rubbish I generally am at appreciating the moment.

I know it's something we're constantly being reminded to do and there's a billion and one guides telling us how to do it, but IT IS VERY HARD, actually.

It's very hard among the work worries, the family plans, the emotional toll and physical constraints of illness, the financial concerns, the news fear, the outside pressures and the failure to understand WHAT THE HELL is happening with Brexit.

And this is from someone in the very privileged position of having a family, good friends, interesting work and being relatively stable (in the scheme of 15 MS filled years) health-wise.

So firstly, I need to count my blessings, and secondly, I need to properly appreciate them. Not everyone is in this position.

But how to appreciate? I found these five pointers through Google (the internet loves a list.)

The article recommends being mindful of your surroundings, beginning your day with affirmations, ending your day on a positive note, being curious and savouring the ordinary.

This would seem to make sense.

So I'm starting small, taking time to notice what's around me. Turns out there is a remarkable amount to appreciate.

The view of our garden (even the overgrown parts), the taste of my favourite tea, the sound of my daughter laughing, the smell of morning air.

The next page in my book, the last of the Easter chocolate, the song for this week, an over-the-fence waft of next door's tempting barbecue selection.

A relaxing bath, cats on my lap, lunch with a friend, stretching out at the end of the day. 

Being in a little less pain than in recent weeks. Not currently relapsing.

It's all there for me to embrace, yet it's not always easy to do so - there are many distracting thoughts lining up to bash into my bubble. But like a long-forgotten muscle, I'm hoping my ability to appreciate will only get stronger with use.



:: Keep on the sunny side by The Carter Family


Wednesday 17 April 2019

Paradise

In Cornwall! With my family!
Enjoying Eden, pasties and sunshine in the caravan.


:: Paradise by George Ezra


Wednesday 10 April 2019

Untouchable

I've been in a lot of pain recently, which has been rubbish.
Painkillers aren't helping, physio isn't helping, rest doesn't seem to be helping either.

While it sounds horribly pretentious - and I perhaps need a word with myself - my bouts of pain always makes me think of the poem Musee des Beaux Arts by W.H. Auden.

He writes that suffering is an intensely individual and personal experience. As outsiders we can only sympathise vaguely before simply carrying on. And that's if we even notice at all.

In a strange way I find this comforting.

Musee des Beaux Arts 
 
About suffering they were never wrong,
The old Masters: how well they understood
Its human position: how it takes place
While someone else is eating or opening a window or just walking dully along;
How, when the aged are reverently, passionately waiting
For the miraculous birth, there always must be
Children who did not specially want it to happen, skating
On a pond at the edge of the wood:
They never forgot
That even the dreadful martyrdom must run its course
Anyhow in a corner, some untidy spot
Where the dogs go on with their doggy life and the torturer's horse
Scratches its innocent behind on a tree.

In Brueghel's Icarus, for instance: how everything turns away
Quite leisurely from the disaster; the ploughman may
Have heard the splash, the forsaken cry,
But for him it was not an important failure; the sun shone
As it had to on the white legs disappearing into the green
Water, and the expensive delicate ship that must have seen
Something amazing, a boy falling out of the sky,
Had somewhere to get to and sailed calmly on.

                               Landscape with the Fall of Icarus by Pieter Brueghel

:: Untouchable by Rialto

Thursday 4 April 2019

Sweet dreams (are made of this)

Alright, alright, alright, I admit it. I've ovedone things again.

I appear to be absolutely incapable of learning from the past 15 years and have therefore pushed and pushed and pushed until I find myself in quite a bit of pain and with failing speech.

I find it very, very hard to accept that I need to stop. It's a combination of 'oh, I'll be fine' + 'well, I could do it before so why can't I now' + 'denial, denial, denial.'

But when I spent the past week in all-over body pain and finding it increasingly difficult to string a coherent sentence together, I have realised it is time to stop.

It's been a busy year to date - I started the year panicking about my freelancing work coming to an end, worrying about trying to re-enter the job hunt.

So I volunteered with our local MS Society to look after their communications, which has turned out to be a lovely (but busy) thing.

Then an offer of consultancy work came my way, which is also a lovely (but busy) thing.

Added to the usual day-to-day life of cooking, washing, school-admin, family fun, medical appointments, friend-supporting, keeping-on-top-of-Brexit-horror - it's all added up to a bit of a crash.

So I'm stopping. For a while at least. Even if that stopping only amounts to sitting down for a bit in comfy clothing, having a cup of tea and switching off the news for a day.


:: Sweet dreams (are made of this) by Eurythmics