North country boy

We’re having our kitchen ripped out and refitted at the moment.

It is long overdue and both exciting and somewhat testing.

We’re trying our very hardest not to live on takeaways and are spending quite a lot of evenings trying to reassure our two cats that the bangy, smashy men won’t be here forever.

Their furry brains are refusing to accept this and every day starts with them bolting through the cat flap at speeds I never thought cats could hit (particularly the larger one whose main activity is to eat until his cheeks resemble spacehoppers and then sleep it off until the next meal.)

But it’s getting done and, thanks to our kitchen fitting duo, getting done with a combination of amusement and 90s indie.

As evidenced the other day when I wandered past the gaping hole that is currently our kitchen to find one balancing precariously up a ladder and the other with his head in a cupboard both singing along loudly and happily to the radio.

Brilliant.

:: North Country Boy by The Charlatans

Don't you worry 'bout a thing

My daughter said a lovely thing the other day.

Not a grand proclamation of love, not a universal message of kindness and friendship and not even an announcement that she was doing her homework unprompted. (Although to be fair to her, she does do two thirds of these things; we’re working on the homework.)

No, it was: “Mummy, sometimes I forget you have MS.”

It was such a simple sentence, but such a great thing to hear.

Not because I want her to live in denial, not because she thinks I’ve got better, not because I hide it from her, but because I want her to be able to forget. If not all of the time, then certainly sometimes.

I want her to know that although MS is there, it won’t take her over. That my illness has never been her world, her responsibility or her fault.

It’s not easy. She’s a thoughtful and sensitive child who is very conscious of other peoples’ emotions. Who knows if she always would have been this way or if growing up with MS has made her more empathetic.

It is incredibly difficult for a child to grow up with a parent affected by any sort of ill health. A parent who cannot always be consistent, a parent whose future is uncertain, a parent who might appear to be leaving you bit by bit, day by day.

That’s a pretty hard mix to get to grips with as an adult – almost impossible to imagine how it must be for a child.

What we’ve found helps as a family are these simple things:

* honesty – our daughter knows that mummy’s body doesn’t always work properly, that she might need to take sudden rests, that she takes medicine, that sometimes she has to miss things. Age-appropriate honesty and open conversations can help stop or lessen some of the imaginary fears.

* attitude – having limits is nothing to be ashamed of, we all have them in varying ways. But recognising and readjusting your limits then carrying on with pride and confidence is a really good message.

* planning – children need to feel there is always someone there for them. If I can’t do a school pick up or party drop-off then we ensure a family member or friend can. It may not stop the worry that I’m not able to do it, but it eases the uncertainty a bit.

* appreciation – being able to live in the moment is something kids can do really well. I’ve learned a lot from her on this and we often talk about all the things we are grateful for. A friend has a daily positives blog which does this fantastically well and it really makes a difference to your mindset.

* love – she will never be short on this.

I know my daughter worries about me, I know she probably always will. But just for the moment, I’m glad she’s able to forget.

:: Don’t you worry ’bout a thing by Stevie Wonder

Vanity kills

Right.

That's it.

I'm having a hair cut.

My crowning glory - which has absolutely never been glorious - has been reducing in volume for the last few months and although we have had some stresses, I think there may be another culprit...

The official side effects of Tecfidera don't list hair loss, but there's far too many anecdotes on Tec forums of hair breaking, thinning and full-on shedding for me to not believe there is a link.

So Friday will be haircut day and I fear with the amount lost, I'm going to have to go short.

The last time I had a crop I was a sensitive teenager at secondary school and was emotionally scarred by a dinnerlady who, on seeing me line up with my friends, asked "Oh, are you sitting with the girls as well?"

Not a great confidence boost to a 13-year-old with spots, a sizeable nose and now, apparently, a masculine aura.

But there's no getting round it, my hair is falling out so the scissors are going to have to get a workout.

And I shall be wearing everything feminine I can lay my hands on for the foreseeable future.

:: Vanity kills by Codeine Velvet Club

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.