Can't stop the feeling!

We had a lovely holiday in Pembrokeshire last week – ice-cream, sunshine, sandcastles, actual castles and defeating the most unnerving villains ever created at the Doctor Who experience.

As this was a British summer holiday, it wasn't always hot and there was rather a lot of wind, but this didn't deter my daughter and I from donning our wetsuits (useful to fool other beachgoers into thinking you're more active and capable than you actually are) and attempting to bodyboard.

I was pretty determined to try this as part of my newly found gung-ho approach to tackling fear. 

So, with a kindly donated bodyboard, we toddled off down to the sea and had a go.

Oh my word, it wasn't glamorous.

Daughter did well in the shallower waves, keeping balance and managing to stay afloat. I needed to go further out because 40-something-lying-stranded-in-the-shallow-water looks vaguely pathetic. Especially if you're wearing a people fooling wetsuit.

So out I went and onto the board I got. And the waves came. And I got pretty impressively drenched. It was bit scary, very flipping salty, but absolutely great.

Coming out of the water with my eyes closed and flailing around for a towel/tissue/husband's shirt to wipe my face, I suddenly recognised a feeling.

Not one of pride, not one of success, not even one of minor disbelief that I was on a bodyboard in a wetsuit – but an actual feeling. In my actual feet.

I haven't felt anything properly in my legs and feet since a significant relapse I had after my daughter was born almost nine years ago. All nerve pathways controlling temperature and sensation were utterly scrambled.

Nine years of not only being unable to tell if the bath water is hot or cold, but not even recognising that I'm in water. Nine years of being unable to tell if the radiators are on or off or if I'm walking on stone or carpet.

I've cut my feet on glass I didn't realise was in my shoes and unknowingly burned blisters on my legs when a hot water bottle burst in my sleep.

But this holiday, I could feel that the water was both gloriously wet and pleasantly cool. That the rock pools lying in the path of the sun were deliciously warm.

On returning home, I can tell without using my hands that my feet are cold. I know what grass feels like on my feet again, I can step on something sharp and know it hurts.

What I don't know is why I can suddenly feel again. Has it taken nine years for the damage to fade? Has it been incrementally improving without me realising? Has the Tecfidera played any part?* What on earth happened to make me feel again?

I'll ask my MS nurse when I next see her, but until then, this is one time that I am actually happy to be experiencing cold feet.

:: Can't stop the feeling! by Justin Timberlake 

*Unlikely, it's a disease modifier, not a disease mender.

Your love alone is not enough

We're on holiday in Pembrokeshire this week.
To celebrate, I'm sharing one of my favourite songs from Wales' finest.

:: Your love alone is not enough by Manic Street Preachers

Monsters and angels

It's the school summer holidays at the moment and the whole six weeks are akin to sitting precariously on some sort of MS seesaw.

Balancing the joy of child-at-home with the payback of, er, child-at-home.

During the normal school term, our daughter is at school for five days, I am at work for three - the two spare days I have are rest and recuperation days.

And, as anyone with a chronic illness and no energy will tell you, these days are pretty crucial. But in the holidays R&R is, ironically, pretty hard to come by.

So far we've had a really lovely time with trips out, bike rides, play days with friends and a pretty impressive shoe shopping expedition which saw four pairs of shoes purchased and at least 350 tried on.*

We've been running to a complicated pattern of holiday clubs, kid swapping with friends, time with grandparents, work meetings and extra training.

(There's a detailed spreadsheet pinned up in the kitchen because there is no way my battered memory would cope otherwise.)

On the upside, the extra time with my daughter has been fabulous - but on the downside, I don't get my two days of recovery time per week.

And now, in week four, it's particularly noticeable.

I'm getting very, very tired and the just-about-held equilibrium is in danger of tipping out of control.

And since we're going away next week, I'm keeping everything crossed that MS doesn't decide to suddenly vault showily onto the seesaw.

Landing legs akimbo, head thrown back, laughing like the wholly inconsiderate bully it is. 
Leaving me grounded while it rides high on the opposite side.

Here's hoping the playground police see fit to intervene and force it to play nicely because it's our family holiday that's hanging in the balance.


:: Monsters and angels by Voice of the Beehive

* I bought heels! This may or may not have been wise.

Closing time

One of the more unexpected outcomes of my first relapse was a hospital threat demanding payment for damaged property.

I hadn’t had a spasm and smashed a window with my elbow, I hadn’t taken a wheelchair on a late-night drag race and I hadn’t got so fed up with the 6am stats checks that I blocked a toilet with a blood pressure monitor.

In fact, it wasn't even me who did the damage, it was my dad.

Context: On the evening of the day I had been admitted, my parents had been walking down the corridor that mum had used for an earlier visit and dad pushed on the door that had been previously fine to use.

This time, however, it made an ominous sounding crunch causing a very angry nurse to shout that he wasn't allowed to use that door, berate him in the corridor and demand his address with the promise he'd be written to and money would be due.

My dad is not a vandal. He is mild mannered with a fuse longer than anyone I know. He is calm and measured, artistic and funny, polite and thoughtful but on the day that I was admitted, he just wanted to get through that door with my mum and see me.

I was thinking of this unlikely corridor contretemps recently, watching him at his worktable in his pyjamas, fluffy beard, patiently painting.

He’s been doing a lot of sitting in his pyjamas recently because eight weeks ago he was diagnosed with cancer. A word that you hear all the time, and know by the statistics will come knocking for someone you love, but you never really want to believe it.

He was diagnosed after he’d already undergone a heart procedure – a double whammy of hospital wretchedness that crystallised for me, as my diagnosis would have done for them, the fact that I cannot stop bad things happening to my parents. I want to, but I cannot ever, fully protect them.

It’s disconcerting, this role reversal of protection, but it’s not unexpected. I’m in my 40s now and my parents are ageing, they are more at risk of disease, of accidents, of danger.  I don’t like it and I can’t stop it, but the risks are only going to get larger as time goes on.

When you’re younger, parents seem indestructible - angels hewn from granite. The most important people in your life and, if you are fortunate, protectors of your whole world.

But as we age we realise they are not infallible; in their opinions, their knowledge - or in their health.

My dad has been lucky, his cancer was caught early, the offending growth removed before it had chance to spread. He’s recovering from surgery and will be monitored for the next five years.

Since his op we’ve chatted quite a lot about the remarkable NHS staff, the wonderful care he received and the long and slow recovery process – a situation I can fully sympathise with.

We’ve both pushed each other down corridors in wheelchairs, we’ve both sat bewildered in hospital beds wondering what will happen next, we’ve both run through scenarios we don’t want in our heads.

We have a lot of things in common, my dad and me - love for Bob Dylan, obsession with ice-cream and an unashamed delight in dreadful puns - and recently we've found a little bit more. A bittersweet blessing.

:: Closing time by Fairport Convention

* If you're wondering what happened with the door, dad never did receive a letter demanding payment. But I'm pretty sure he would have pushed through anything to get to me that day. And, unlike the damaged door, that’s something which works both ways.