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.

Making your mind up

I read an astonishing statistic recently – apparently the average person makes more than 35,000 decisions per day.

THIRTY-FIVE THOUSAND.

A DAY.

Seriously? I can't think that's right. I can’t even work out how we would have time in the day to make that many decisions, never mind what on earth they could all be.

But according to the helpful techie updates I get at work that is the figure our brains are grappling with.

And, as anyone with MS knows, it’s not even a fully functioning brain that is trying to deal with these thousands of decisions to begin with.

It’s no wonder that we, more than most, can suffer from decision fatigue – a term coined by social psychologist Roy F. Baumeister.

Just like muscles tiring after a long workout, our brains are also a muscle that become exhausted.

And when our brain is tired, it conserves energy by making impulse decisions—or by making no decisions at all.

This explains a lot about my inability to decide, well, anything, after a day at work.

But there are a few things that can help:

• Stepping away from the chaos – some of our best decisions are made when we are relaxed and away from the demands of daily life. Giving my brain a break - lying in the bath, back-chatting the cats, zoning out on the settee infront of rubbish tv - can help
• Establishing daily routines that minimize decision making – my work clothes are chosen and put out the night before, I plan meals for the week on a Sunday, I make my office lunches the day before. Yes, I admit, if I suddenly don't fancy the outfit/food it's a bit limiting, but I can live with that
• One thing at a time – OK, not hugely successful at this one. I’m a bit scattergun. Too many emails open in one go, different household jobs begun at once, three part-started books by my bed. Surely it would be a lot less fatiguing to just do one thing at one time
• Setting a deadline on decisions – tell your brain when it needs to concentrate on making that decision, freeing it up to think about other decisions at other times
• Switching the phone off – we face an information tidal wave every day forcing stressed and speedy decision making. Having very little time to think is likely to lead to impulsive decisions. I definitely need to try and step away from technology for a bit to re-set the process
• Eating something healthy - hunger is scientifically linked to our desire to make impulsive decisions. (Actually, pre-MS this might explain some of my youthful fashion decisions. Or university flings)

It’s pretty clear with 35,000 of the little blighters waiting to be tackled every day, there’s no way to avoid making decisions.

And it’s not as if adhering to the above tips will work on those days when absolute brain paralysis hits and decision-making anxiety takes over.

But it’s a start and gives me a bit more confidence in my next big decision. Which is: tea – regular or large?*

:: Making your mind up by Bucks Fizz 

*Actually, I can do this one. Large tea. Always the large tea.

Getting away with it

I firmly believe that when you get your MS diagnosis, you should also be presented with a hamper of indulgent goodies and a nice card.

To be precise, this card:

Not because I am some sort of boot-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.

So imagine my horror when an envelope from my GP landed on my doorstep inviting me to attend an appointment because ‘you are at risk of a long-term health condition.’

My first reaction was, yes, I know, it’s MS. Bit of a late warning.

But, on ringing the surgery, it turned out that actually it wasn’t the usual suspect, it was, in fact, the entirely new prospect of diabetes.

As part of its new prevention programme, anyone who has ever been at risk of developing diabetes is now being invited to a yearly screening appointment to assess that risk and talk through what can be done to help.

I’d been called because - despite having absolutely none of the risk factors - I’d somehow managed to develop gestational diabetes during pregnancy. It went after my daughter was born, but I knew that it would always put me at an increased risk.

Almost 10 years later, it had become a very vague thing at the back of my mind to consider occasionally. But then this letter arrived and brought with it the very present threat of having to deal with another chronic illness.

You would think that being dealt one bad hand should be enough for anyone. But sadly, in life’s faulty deck of chance cards, this is not necessarily the case. Something outlined in this particularly scary article linking diagnosis of MS with a higher risk of developing other nasties.

So what can we do?

We can adapt our diet, take our rest, watch our stress levels, adjust our dreams, change our outlook, grip tight to our humour.

We can try and construct some semblance of a healthy life with the cards we've been given.
But sometimes it feels like a pretty flimsy paper structure.

In the end, I had my screening and I was okay - no diabetes at present. Although I remain at risk and will be reviewed on a yearly basis.

So, for the moment at least, I breathe a sigh of relief.
But I am all-too aware that the sigh shouldn't be strong enough to blow my house of cards down.

:: Getting away with it by Electronic