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

Journey of the Sorcerer

I’m 42 tomorrow.

Really am hoping it’s the answer to life, the universe and everything.

:: Journey of the Sorcerer by Eagles