Delicate

We're in Cornwall - on a holiday originally booked and paid for in 2019.

Postponed twice, for obvious worldwide germ-fuelled reasons, but now finally here.

And it's lovely.

This trip has come with extra appreciation this year of how easily things can change. 

How fine the balance is between a yes and a no, between a can and a can't, between one day and another.

The pandemic has had such an impact on all our lives, that to be teetering out the other side seems almost surreal.

But in the place we've returned to, there are obvious differences and evidence of the toll the past two years have taken.

Some empty shops, a few higher prices, a lot more stories and the poster reminders of masks and high rates.

One place that appears to have weathered the storm is our favourite holiday activity shop where we've been painting pots.

It's lovely to sit as a family and daub paint, in varying degrees of success, on a variety of ceramics.

There are rows of plates, mugs and bowls to choose from, along with piggy banks, fairies and dragons.

So we pick our preferred items, either by usefulness or silliness or potential beauty, pick up our paintbrushes and concentrate.

We sit in the stillness and appreciate the moment for what it is. That in this moment we are content and things seem okay and we should really, really be grateful for that.

Because if the last two years have taught us anything, it's that little can be taken for granted.

And we're all at risk of a bull in a china shop.

:: Delicate by Sananda Maitreya ft Des'ree

Autumn almanac

 Oh, it's been a joyous week off work.

A week with husband and daughter. Slightly limited on options, but not on fun.

We've been chasing through leaves, snuggling with films, chomping on treats and laughing a lot.

It's most certainly been an appreciate-the-moment sort of week.

Autumn almanac by The Kinks

Happy

My dad loves penguins, genuinely adores them. 

Over the years, many a birthday card, fluffy toy, pairs of socks and a few hats have come his way featuring the beloved bird.

So when he turned 70 last year, there was no question about what we'd be buying him.

Our local zoo offers the chance to get up close and personal with (coincidentally) 70 black and white waddlers of the Humboldt variety.

And, despite Covid, we managed to get the feeding experience in.

It was a genuine joy to see dad (the perfect penguin parent himself) among his favourite creatures.

Couldn't be happier.

:: Happy by Pharrell Williams

I wish it could be Christmas everyday

My younger* brother is visiting this week for half term.

He works in theatre as a technical manager and therefore puts in horrendously long hours pretty much all-year round making sure lights and sounds are perfect for all kinds of shows.

He's only recently finished the panto run and has popped to see us this week as it gives him chance to spend time with our parents and my daughter - who loves it when her uncle comes to stay.

Because he only has Christmas Day off during panto, he misses out on all the usual festivities,  general jollification and, as he's a huge eater, the delights of the stuffing balls.

So to rectify this, we're re-running Christmas Day for him today, complete with crackers, token presents and those kind of family jokes that are hilarious to insiders and baffling to outsiders.

It's lovely to see him.
Merry Februmas everyone.

:: I wish it could be Christmas everyday by Wizzard

* Is younger, looks older. I like to remind him of this regularly.

Christmas wrapping

Crikey, that's another Christmas wrapped up and now we're enjoying the inbetweeny bit.

Time to spend important hours with family and friends.

Time to be thankful for what I have and to stop dwelling on what I don’t.

Time for me to wish you and yours a very peaceful and healthy new year.

:: Christmas wrapping by The Waitresses

Army

I hit thirteen years with MS yesterday.

I know, exciting times.

So in honour of this inauspicious occasion (although an occasion nowhere near as inauspicious as the one happening across The Pond today) I have compiled a little list of things I’ve learned.

1. Eye patches are cool: well, they’re not are they, let’s face it. But they might end up being one of the aids (temporary or otherwise) that will make your life that bit easier. Same goes for all those other medical appliances that I try not to look at in the catalogues, but that one day, when I’ve dealt with my pride, might help me.

2. Advice is helpful, but it really is okay to trust your instincts: By all means seek advice, seek it from medical professionals, fellow MSers, online forum boards, friends and family. But you don’t have to agree with it. If something doesn’t feel right to you, or for where you are at that moment in time, listen to yourself.

3. Humour is a remarkably effective lifejacket: This is so, so important. It’s not that you have to embark on a stand-up tour as soon as you are diagnosed or turn every crappy incident into a gag-filled after-dinner anecdote, but do try and retain your ability to laugh. Multiple sclerosis takes enough off you, don’t let it take this precious weapon.

4. A bit of hope is stronger than a lot of fear: I’ve written quite a lot about hope in this blog and where I stand with it. I maintain that it’s helpful and I’m trying to keep it central as I continue with the Tecfidera.

5. I owe a massive debt of gratitude to my family and friends: obvious, but incredibly, incredibly important. I didn’t know, 13 years ago, quite what the hospital admission was going to mean. I didn’t know it was going to shape my working life, my family plans or continually force subtle shifts in my perspective and personality. But I do know that without my family, my friends, my husband and my daughter I would not have got this far. Thank you all for the phone calls, the desire to understand, the surprise presents in the post, the meals cooked and delivered without me having to ask, the childcare and the pep talks. Thank you for the night-time hugs, the daytime support, the rides to hospital, the cups of tea, the steadying arms, the physio teamwork, the care, the concern and the laughter.

This post is dedicated, with love, to everyone in my army.

:: Army by Ellie Goulding 

Mr Brightside

Perspective. Comparisons. Sliding scales.

They’re all interesting phrases when applied to the way you view things – wealth, achievements, career, family, life. Illness.

Like a number of chronic diseases, the perceived seriousness of MS sits on shifting sands depending on who you speak to.

Perhaps you’ve dealt with reactions from people at the oh-it’s-not-so-bad end of the scale. They’ve seen someone being amazing on the Paralympics with it. Or know a friend’s mum who has had it for 25 years and still doesn’t need a walking stick. Perhaps they know someone who works fulltime and goes to the gym every other day?

On the other hand, perhaps they’re at the other end of the scale and they’ve got a pretty bleak outlook for you. Maybe they’ve cared for someone with the primary progressive form? Watched someone deteriorate before their eyes? Seen someone in the end stages of MS?

It’s entirely possible you’ve dealt with these – and many opinions in between – from the medical community.

During the summer I saw a gp I don’t normally see. He asked how I was generally and we had a general chat about MS and recent research.

He concluded by saying it would be good for his newly-diagnosed patients to see me still working and with a family.

“Because really, for you, it’s just an inconvenience,” he finished. With a reassuring smile, believing he’d said the right thing.

And, if I take a deep breath to calm down and think about that proclamation, then to some degree he was right. I’m currently not hugely debilitated. I still work, drive and most of the time I appear to function like everyone else.

To a gp, who is bound to come across far more aggressive cases, he may well believe he could describe my MS as ‘an inconvenience’ and there’s a little bit of me that sort of accepts that.

But to me an inconvenience means a flat tyre or the radiators needing bleeding or running out of teabags.

It does not mean slipping down the workforce ladder because I know I couldn’t manage it or missing most of the things healthy people take for granted or making the painful decision to not extend our family.

None of these things would I describe as ‘an inconvenience.’

So while I do recognise that I am somewhere in the middle of the health-death track bar, I think we would all like recognition of our own personal scales and a bit more consideration of what might actually count as our inconvenience.

:: Mr Brightside by The Killers