Annie's song

It's really starting to feel more hopeful and Spring-like now. A reason to celebrate, I think.

Added to which it's soon the official day this of my favourite poets.
So, with thanks to the weather, the beauty in the world around us and Dylan Thomas, here is his lyrical tribute to his childhood.

(If you like, you can really treat yourself and listen to the magnificent Richard Burton work his magic on it.)

Fern Hill

Now as I was young and easy under the apple boughs
About the lilting house and happy as the grass was green,
The night above the dingle starry,
Time let me hail and climb
Golden in the heydays of his eyes,
And honoured among wagons I was prince of the apple towns
And once below a time I lordly had the trees and leaves
Trail with daisies and barley
Down the rivers of the windfall light.

And as I was green and carefree, famous among the barns
About the happy yard and singing as the farm was home,
In the sun that is young once only,
Time let me play and be
Golden in the mercy of his means,
And green and golden I was huntsman and herdsman, the calves
Sang to my horn, the foxes on the hills barked clear and cold,
And the sabbath rang slowly
In the pebbles of the holy streams.

All the sun long it was running, it was lovely, the hay
Fields high as the house, the tunes from the chimneys, it was air
And playing, lovely and watery
And fire green as grass.
And nightly under the simple stars
As I rode to sleep the owls were bearing the farm away,
All the moon long I heard, blessed among stables, the nightjars
Flying with the ricks, and the horses
Flashing into the dark.

And then to awake, and the farm, like a wanderer white
With the dew, come back, the cock on his shoulder: it was all
Shining, it was Adam and maiden,
The sky gathered again
And the sun grew round that very day.
So it must have been after the birth of the simple light
In the first, spinning place, the spellbound horses walking warm
Out of the whinnying green stable
On to the fields of praise.

And honoured among foxes and pheasants by the gay house
Under the new made clouds and happy as the heart was long,
In the sun born over and over,
I ran my heedless ways,
My wishes raced through the house high hay
And nothing I cared, at my sky blue trades, that time allows
In all his tuneful turning so few and such morning songs
Before the children green and golden
Follow him out of grace.

Nothing I cared, in the lamb white days, that time would take me
Up to the swallow thronged loft by the shadow of my hand,
In the moon that is always rising,
Nor that riding to sleep
I should hear him fly with the high fields
And wake to the farm forever fled from the childless land.
Oh as I was young and easy in the mercy of his means,
Time held me green and dying
Though I sang in my chains like the sea.

:: Annie's song by John Denver

Somewhere only we know

I've been wondering how to approach this.

This subject our Victorian ancestors might, hilariously, have called horizontal refreshment but one which I like to think needs a bit more maturity and nuance. (Although obviously I am going to use that historical euphemism from now on.)

Yes, it's sex.
But not just sex - sex and disability.
It is, to put it mildly, a complicated mixture:

• the emotions: Am I still attractive? Will anyone still want to sleep with me? What if I do/don't want to do it but my partner does/doesn't?
• the practicalities: Can I still do it? How do I still do it? And even if we're agreed on the cans and hows, what if I am seriously too tired to do it?
• not to mention the stuff you don't initially think about: What if my hands give up halfway through? What if my brain refuses to think sexy thoughts? Not to mention, erm, swallowing difficulties.

Challenging, isn't it? But common. A quick Google indicates that around 50 to 80 per cent of women with MS will experience some degree of sexual symptoms during the course of the disease, along with up to 90 per cent of men.

And bearing in mind MS generally divebombs into peoples' lives in their 20s and 30s – potentially prime sexy time* - and could last for the rest of our lives, what can be done to help?

There's no easy answer, but there are a few handy tips: scheduling sex for when you're least tired (not hugely sexy, admittedly, but practical), trying different positions to avoid physical impacts (take THAT annoying spasms), sex toys (can help with decreased sensation), medication (viagra and synthetic hormones) and being prepared to keep talking and keep trying. The MS Society has some useful thoughts and suggestions.

From a personal point of view, the relapse I experienced after having my daughter successfully knocked out all – and I mean ALL – of the sensation from my waist down. Pretty rubbish.

Initially, however, my main focus was on somehow recovering while also caring for a three-month old who needed a mummy. Any other concerns were taking a bit of a back seat.

But as time went on and sensation didn't seem to be making much of an effort to reappear, hubby and I realised we needed a few frank conversations. And, I think, this is where sex talk (in the medical sense) was really important.

Being able to speak honestly, and with some humour, about what had happened to my body and how it affected us both was really helpful. If there's two of you in bed, then logically there are two sets of feelings to be taken into account. (If there's more than two, the same applies, but you might just need to organise a conference call.)

Talking is always good, it helps rebuild and reconnect after damage. Talking through your feelings about sex – the worries, the fears, the changing perspective - is not necessarily easy, but my view has always been that if you're willing to share your body with someone for extended periods of time, you should also be willing to share your mind.

In my case, while some parts of me took a substantial amount of time to recover, fortunately others didn't take quite as long.

And while the physical mending was a huge relief, it was actually the emotional communication that really helped us through that particularly intimate relapse.

How refreshing.

:: Somewhere only we know by Keane

*Although I'm sure a few older readers will disagree – and I hope they do, it means I will have something to look forward to.

Reasons to be cheerful, part 3

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 in an office facing an unassailable pile of spreadsheets while silently weeping at the loveliness of the outside world, but on the whole after what seemed like an endless freeze, it's been really nice.

We've dipped back to normal April temperatures now, but for three glorious days last week, the weather gave us a glimpse of summer promise and forced us to make the most of it (even around the spreadsheets.)

I am in the fortunate position of being able to work from home, so reading documents in the garden, walking my daughter to school before opening my emails or even pegging the washing out inbetween tasks has been deeply lovely.

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 be aware of what on earth a Milkshake Duck* is.

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 14 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 cool shower, cats on my lap, lunch with a friend, stretching out at the end of the day. 
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.

:: Reasons to to be cheerful, part 3 by Ian Dury and The Blockheads

*One of last year's words of the year, apparently. I am so old.

Stupid girl

I'm reasonably competent. At least, most of the time.

I can function fairly well in company, I can generally navigate the supermarket (even if they INSIST on moving the yoghurts every time I visit) and I can sometimes get a couple of the answers on BBC 2's boffin-fest Only Connect and then feel super smug for the rest of the evening.

But I'm not sure if I'm quite as with-it as I was when I passed my degree, or when my brain worked on super-speed as a reporter filing court copy up against deadline, or if I'm even simply as mentally able as I was a year or so ago.

Because a nosedive in cognitive function is just one of the many distressing aspects of life with MS and a lot of people experience frightening and frustrating impacts on learning and memory, attention, concentration and mental speed, problem solving and word finding.

So, pretty much everything it takes to get through the day.

Issues are, like most things MS-ey, generally caused by inflammation and lesions in the brain interrupting the transmission of electrical messages along nerve fibres, reducing the speed and accuracy of the information.

My word-finding and mental speed are noticeably worse when I'm tired, have been concentrating for long stretches of time, if I'm surrounded by a lot of noise or after being particularly physically active. They're also a bit rubbish if I'm particularly emotional – so any complex problem solving in the run-up to my period is an absolute no-go.

This cognitive carnage is (literally) on my mind at the moment as I have recently ended one form of employment and am embarking on another quite exciting one.

While some aspects of the new role are very familiar, there are many that are completely new and what is concerning me is whether I am still as able as I was 14 years ago before MS introduced its roadblocks in my brain?

Can my beleaguered Numskulls still find their way around the disrupted neural pathways to make the links and retain the learning that will make me any kind of decent prospect?

I don't know. I can only hope. And, to try and relive the pressure, I'm doing my best to take it day-by-day.

Speaking of which, cognitive results from this week:

• Times achieved a one-hour drive to new workplace: one (Success!)
• Percentage of new techie detail taken in at first work meeting: approx 70% (Not bad!)
• Numbers of minutes spent wandering around the house looking for watch with watch already on wrist: seven (Oh dear.*)

There is some really useful information plus explanations, support and coping strategies in this information sheet from the MS Trust 

:: Stupid girl by Garbage

*In my defence, I was wearing long sleeves.

Postcard

We’re on our Easter hols in Cornwall. How lovely.

::Postcard by Eddi Reader

(In my former life as a reporter I once interviewed Eddi Reader. In a deeply appropriate name-to-event experience she was embarking on a tour of bookshops.)

9-5

Work. It’s an interesting balance.

Generally I like it. And I am very appreciative of the fact that, generally speaking, I can still manage it.

On the other hand, on bad days (or bad weeks or months), it’s an almost impossibility.

And as of last week, its become an actual impossibility as I was made redundant.

This wasn’t a shock. I worked for an organisation which supports some of the most vulnerable in our society - but, by the nature of its work, is an organisation that needs support. Quite a lot of it financial.

And there’s not a lot of that about. Or at least not where it's most needed.

The announcement of the swingeing cuts - and inevitable redundancies - that were being made was given at a roadshow* last year. So since then I’ve been trying to prepare for what this might mean for my future working life.

Thus far I’ve been lucky with work – employers have tried to understand and support me, but I know I won’t always find employment where this is the case. Or perhaps always find employment.

I’m very aware that although my professional knowledge and experience has increased vastly since I was diagnosed, so have my physical and cognitive problems.

There are many, many unfortunate things about the timing of MS, but one of the biggest is that it tends to rear its ugly head in your 20s or 30s, the age at which you’re really hoping to get your career started.

And then, as time and damage march mercilessly on, it gradually eats into your working life options. The opportunities for advancement, promotion and more income look increasingly slim.

In sitcom world being ditzy, clumsy and forgetful is amusing, charming, even endearing. In real life, you’re just a pain in the arse employment liability.

But, incredibly fortunately, an opportunity has come up that a couple of months ago I had no idea even existed.

It’s new and it’s unknown and it will involve a pretty hefty amount of adjusting, but it’s very interesting and includes the chance to use my old skills in a new way.

It’s very early days and I’m not sure how it will pan out, but it’s a chance I didn’t expect to have and I am incredibly grateful.

:: 9-5 by Dolly Parton

*I wonder what the internal thinking was behind roadshow as a name. It’s certainly logical, members of our London-based management team travel out to a number of points across the country where we have offices, programmes and projects. They are, indeed, on the road.

But to many of us the term brings to mind Radio 1 and it’s always slightly disappointing that there’s no music, whistles and/or shouty DJs involved.

Being boring

A lovely friend of mine is currently struggling with the achingly dull and deeply unnerving process of recovery.

She had her first relapse around this time last year and still feels she is dragging her way through the improvement swamp.

After the initial drama of the damage being done, the hospital admission, the steroids and the crisis management, it’s actually the recovery that proves itself to be the more testing journey.

A journey that manages to be both tedious and terrifying.

There might be noticeable leaps during the process, there might be tiny incremental steps, but at some point in every recovery comes the point at which you begin to wonder if this is it. Is this as much as I’m going to get back?

Sometimes it isn’t and your body will surprise you with a further glorious bust of repair.

But sometimes it is and that is when you have no choice but to start the process of mourning and gradual acceptance.

Every time it happens, it is like a mini death and every time it happens, you have to go through a grieving process.

And it all take SO LONG. My longest recovery (or, more accurately, where I improved enough, but not enough to be as I was before) took a year and a half.

A year and a half of hoping and waiting and watching and bargaining and being careful and declining invitations and being so bloody sensible.

With the end result of, well, what? Damaged vision, painful skin, impaired balance, cognitive mash.

As I said to my friend, the whole process reminds me of a line from the wonderful poet Philip Larkin.

In his poem Dockery and Son* he describes life as “first boredom, then fear” and it’s a line I think that could be stolen to describe the recovery process.

It takes a lot of patience and strength to wade through a recovery. It takes a lot to lie endlessly and uselessly in bed and wait, a lot to live in our own unhelpful thoughts and a lot to drag ourselves up and carry on. Living with the dreadful knowledge that sooner or later this will all happen again.

So we should remember to be proud of ourselves – even in the darkest times.

To be proud of how we make our own way through the boredom and the fear.

:: Being boring by Pet Shop Boys

*Read the full poem here. It’s wonderful.

I first fell in love with Larkin's lyrical discontent as an A-level student, but the full aching sense of loss, disappointment and regret in this poem was lost on an 18-year-old. It’s only on re-reading as an adult that it’s made me cry.