A mixtape for multiple sclerosis

A mixtape for multiple sclerosis

Wednesday, 24 May 2017

Be strong now

I've been invited by an online MS community to write a letter to my newly diagnosed self that they can share with their members.
I enjoyed doing it, so thought I'd share it here too:

Dear 2004 me,

You are stunned and worried and trying to be brave.
I am older and wiser and have a few things to share:
  • You are hugely stubborn, we know this. You are pig-headed, independent and bloody-minded and sometimes this will help you. But your family and friends will want to look after you. Let them. They are scared too and need to stop feeling helpless.
  • Start looking after your body more, it may not feel like it at the moment, but it's on your side and will try and repair itself in more ways than you can imagine. It will lace up its gloves and step into the ring for you time after time - the least you can do is be kind to it.
  • You are still working, but you do change jobs. Twice. Perspectives change and your professional outlook has shifted too.
  • I know it's on your mind; yes, you do have a child. She is beautiful.
  • NEVER lose your sense of humour. It will be tested, it may get darker, but it remains a remarkably effective lifejacket.
In time you will wake up and those two letters will not be the first thing you think about.
Life will continue; you will stubbornly wear your best high heels and laugh and cry and learn along with it.

You are far, far stronger than you think and I am very proud of you.

Love 2017 me.

Ps that man you're with? The one who didn't run when you found out the news? You're right - he is the one. Marry him.

Wednesday, 17 May 2017

Green eyes

Of the seven deadly sins, I reckon I’ve made my way through a fair few. Sometimes all in one go.*

It’s tricky to know which of the seven – lust, gluttony, greed, sloth, wrath, envy or pride – is the most commonly experienced. 
Although in a world full of a) humans and b) human nature, I’m pretty sure you could make a case for each of them.

But the one I’ve been aware of most during my MS life is envy.

It's certainly not there all the time, it absolutely doesn't stop me being happy for other people; but it is a part of my MS experience and that’s not a pretty thing to admit.

It’s not the simple envy of that woman in the office’s fabulous new sky-scraper heels. Or her photographs of an exotic and sunkissed holiday.

And it’s not even about her tales of her spontaneous fun while wearing the fabulous shoes in the exotically sunkissed location.

No, it’s not the things themselves - it's more what those things represent. 
It’s the fact that she can wear and do and enjoy all these things without even having to think about it. Or at least, not as much as I would have to think about it.

To the outside observer, there are a lot of glaringly obvious difficulties with having a disability. But there are also small things that can bring on the green mist. The endless niggly little things that I never even had to consider in my life pre-MS.

So if I applied these niggly little things to the imaginary sunkissed - or in our case typically British-weathered - holiday, they would include:

Do any of my seemingly endless medical appointments clash with the holiday dates? Where is the nearest doctor/dentist/hospital/chemist? Where are the regular and emergency toilet stops on the journey? Will I be able to organise my drug pick up times to ensure my meds co-ordinate with my break? If I go for a paddle with my daughter in the morning will that wipe me out the rest of the day? How do we co-ordinate relaxed family eating out around my tablets? Exactly what insane volume of clothing will I have to pack to cover all my temperature issues? (Although to be fair, this last one is well known to anyone holidaying in the UK.)

Do I own anything vaguely decent that I can wear in public that won’t touch my skin in a hugely painful manner? What outfit best accessorises with a stick? Am I going to play it safe in the flats or risk toppling in the heels? Why does my already fine hair have to be at the mercy of a hair thinning but (hopefully) disease modifying drug? Exactly how polite are people actually being when I can’t see well enough to apply my eyeliner but they don’t want to point out the wonky?

So, imaginary office colleague - you are the woman I used to be - and I am jealous of you.

I’m jealous of a life free from the big MS challenges and the small MS annoyances. I’m jealous of your spur-of-the-moment, no planning, boundless freedom.

Yes, I know you'll have your own problems that I know nothing about and I'm also very aware that comparison is the thief of joy.
So I try my very, very best not to be jealous - I don’t want to be, but sometimes I just am.

Admitting it seems utterly churlish. You are welcome to share your pictures and your holiday stories. You are unaware of my experience and that is not your fault.

So I'm glad you had a good holiday, I really am.
But just today I don’t think I can face looking at your photos. 
Especially if you’re wearing those shoes.

*It was a messy night.

Wednesday, 10 May 2017

Cosmic dancer

Finding little ways to lift your spirits is essential to everyone’s well-being, not just those of us with an annoying illness.
My little lifter this week comes courtesy of my favourite poet Dylan Thomas – very timely as it is his day on Sunday

Since I was a teenager I have loved his astonishingly creative command of language, and while I have many, many favourites among his poems, I’m going with this one today.

Thank you Dylan.

And Death Shall Have No Dominion

And death shall have no dominion.
Dead men naked they shall be one
With the man in the wind and the west moon;
When their bones are picked clean and the clean bones gone,
They shall have stars at elbow and foot;
Though they go mad they shall be sane,
Though they sink through the sea they shall rise again;
Though lovers be lost love shall not;
And death shall have no dominion.

And death shall have no dominion.
Under the windings of the sea
They lying long shall not die windily;
Twisting on racks when sinews give way,
Strapped to a wheel, yet they shall not break;
Faith in their hands shall snap in two,
And the unicorn evils run them through;
Split all ends up they shan't crack;
And death shall have no dominion.

And death shall have no dominion.
No more may gulls cry at their ears
Or waves break loud on the seashores;
Where blew a flower may a flower no more
Lift its head to the blows of the rain;
Though they be mad and dead as nails,
Heads of the characters hammer through daisies;
Break in the sun till the sun breaks down
And death shall have no dominion.

Wednesday, 3 May 2017

The metre

Social media is increasingly becoming a brown and sticky Marmite-esque topic – love all the benefits or hate all the downsides.

For positive campaigning, bringing people together, offering support and providing information it's really great.

For negative comparisons, lack of human contact, time wasting or (not that I want to reference this man) FAKE NEWS it's very worrying.

And sometimes, in life's crappier moments, it can just be a really useful thing.

Recently I was contacted by a friend via the social media megatruck that is Facebook.

Although we've only met in person a few (mainly drunken) times, I've admired this person from an electronic distance for quite a while as judging by their posts it's clear they are great. From their chosen shares and interests, I thought we may also have a fair bit in common.

Unfortunately, more in common than I had imagined, as last week I had a message out of the blue saying they'd just received an MS diagnosis.

I am saddened every time I hear of someone receiving their non-negotiable entry into this club, but this one really touched me.

After a couple of messages we arranged to speak on the phone – and we talked for quite some while.

And apart from being right about thinking they are great, what struck me most was hearing my own voice from 13 years ago coming down the line – the shock, the fear, the questions and the floundering in a vast universe of unknowns.

Thirteen years ago my diagnosis was broken to me by a gp who really didn't have a clue about MS. My friend was given the news at the foot of a hospital bed infront of two medical students.

Otherwise, for both of us, that was pretty much it. As with too many others MSers I've met, we're told we have an incurable and progressive disease and then we're left to get on with it.

Yes, I have had good experiences with nurses and neurologists over the past 13 years, but my general feeling with this (as I suspect with many other chronic conditions) is that it's actually outside the medical community that we do most of our learning - whether that's through online forums or in-person support groups.

It's the network of new friends that we've unexpectedly made, it's the bonding discussions of shared experiences, it's the personal questions that we can ask them without fear or embarrassment. 

It's the grace under pressure, the dark frontline humour and the genuine understanding that help get you through.

Building this MS world of connections and friendship – be it through social media or in person – is like creating an intricate shimmering filigree which can surround and support you.

And when you do find yourself in the non-Marmite brown and sticky stuff, this delicate web can spin itself into a pretty strong safety net.

Wednesday, 26 April 2017

The edge of glory

MS: *brightly* Hiiiiiya

Me: *reading* Oh, hi.

MS: *looks smug, puffs chest out* Hiiiiiiiiiiiiiiiiya.

Me: *reluctantly putting down book*  You looked pleased with yourself.

MS: Yes, I’m in the news!

Me: What have you done now?

MS: There’s no need to be like that.

Me: I think you’ll find there’s every need. So go on then, what’s happened?

MS: Well, it’s very exciting - it’s all about me! Some clever research boffins think they’ve finally found a cause for meeeeeeee!

Me: Oh yes? And have they also found any actual point to you? Other than being an attention-seeking diva, obviously?

MS: Ooooh, unnecessary.

Me: Totally necessary. So go on then *rolls eyes* what’s the cause?

MS: Well, it’s something super sciencey, but basically they’re saying there’s too much of one type of protein in your brain that’s causing miscommunication between your calcium supply and your mitochondria...

Me: My what now?

MS: Durrr. Mi-to-chon-dri-a, it’s the energy-creating powerhouse bit of a cell.

Me: Oh, yeah, right, I knew that.

MS: Course you did. Well, anyway, this miscommunication with the calcium supply triggers the mitochondria into misbehaving which in turn causes toxicity for brain cells in people with MS.

Me: Erm, hang on, did you just term all your disability-causing crapness as ‘misbehaving’?

MS: Well, that’s what it says here, and as you know, I’ve always liked to think of myself as the very spirit of misbehaviour. A little bit cheeky, a little bit naughty *winks to camera*

Me: Please don’t do that.

MS: Sorry.   *under breath*  Not sorry.

Me: Aha, so - and please excuse my cynicism here - putting aside all the previous miracle breakthroughs that we’ve heard about will this one actually lead to a cure?

MS: Well, and this is the rather worrying bit for me, I’ll admit. What they’re saying is that because they reckon they’ve finally found the cause, which as you know, has been the subject of mystery and disagreement for many years, it could now pave the way for targeted and pioneering new treatments.

Me: Oooh, so you could finally be gone then?

MS: Guess so. Bit sad actually.   *Pauses*   Right, well, not much more to say here, I’ll be off. Bye then.

Me: Wait, what? You’re actually leaving? Now?

MS: Ha ha. Fooled ya. Just because they think they’ve found a cause, doesn’t mean they’ve actually found a cure yet does it?

Me: Oh, well no, I suppose not.

MS: No, you suppose not correctly. So until then I thought I’d just lurk around a bit. Silently. Waiting. Like the ever-present threat I am.

Me: Yes, thought so. *sighs, picks book up again* Guess it’s back to as we were then. 

MS: *smirks* Yes, as we were.

Me: *whispers* But hopefully not for much longer. You tiresome little twunt.

Wednesday, 19 April 2017

Lily, Rosemary and the Jack of Hearts

When you become a metaphorical card-carrying member of the multiple sclerosis community, you can celebrate this news by carrying an actual, literal card.

This handy little orange plastic jobbie explains that a person has MS, reassures panicked bystanders that it’s not infectious, and details why the holder might need help fast:

It is intended to be produced if you need the loo urgently, are at risk of falling or cannot see or speak clearly and is - assuming the person being presented with the card is helpful - a useful thing to have.

But from this card-carrying member’s point of view, the orange card I would far rather have had on diagnosis is this one:

Not because I am some sort of top-hat shaped recidivist, but because if you’re given one crappy incurable disease, surely you should automatically have a free pass from any other sort of health calamity.

Seems only fair.

But sadly, in our own faulty deck of chance cards, this is not necessarily the case. Something neatly outlined in *panic warning* this particularly scary article linking an MS diagnosis with higher risks of other nasties.

It’s not just the big illness risks either, there’s a whole list of other complaints that exist as part of some sort of bad MS knock-on joke and for which I firmly believe we should get a whole pack of get out of jail free cards.

Things like muscle atrophy due to long periods of relapse inactivity, dental problems due to stiffness, weakness or muscle spasms affecting the ability to brush or floss properly, weight gain because of difficulty moving around or poor nutrition due to limited energy or a reduced income.

Not all of these things - larger or lesser - happen to everyone with MS. And of course, some can be balanced with help, information and support. 
But such piece-meal construction of a healthy life makes for a pretty precarious paper structure.

And, like any house of cards, it only takes one light breeze for them all to come tumbling down.

Wednesday, 12 April 2017

We are the village green preservation society

We're enjoying the Easter break and have just eaten our entire body weight in scones, cream and jam in a quintessentially English tea-room.
It made me feel I was living in this gem of a song.

Back to the MS-ey stuff next week.

:: We are the village green preservation society by Kate Rusby.
(I do love The Kinks, who wrote this one, but Kate's pronunciation of Donald Duck can't be beaten.)