What a wonderful world

We've all been tipped headfirst into a world we no longer understand.

It's frightening and confusing and for many of us, for many good and valid reasons, downright unfair.

My daughter, like lots of other children across the world, is of an age where she can understand why we need to be doing what we'e doing and the benefits the 'stay home, save lives' message have.

But she's also young enough to feel mighty hard done to - not least of all because she's in her last year of primary school and it's entirely possible she won't be returning.

However, she's nothing if not resourceful and has made her own version of a school timetable. So far we're finding that learning together is really quite a pleasant experience.

How long this lasts, I don't know. But the more pressing question at the moment is what exactly constitutes those 30 minutes of "weird stuff"?

:: What a wonderful world by Sam Cooke

Going underground

Coronavirus, obviously.

It's bewildering and frightening and almost unbelievable all at the same time.

We're at the very start of isolation measures and people who have never had to do this for extended periods of time are now going to have a very small insight into our lives, particularly our lives during a relapse.

So to reflect this - and to keep a bit of sanity - here's a piechart of things that may help during this time.

:: Going underground by The Jam

You & Me Song

It was my birthday at the weekend, my 15th with MS.

I don't normally tend to acknowledge my MS alongside celebrations for my advancing years, but this year I did think about it.

Things have changed since my last birthday - the result of two relapses within seven months - and the difference between my 43rd birthday and 44th were clear to me.

I went out for dinner with friends the night before my big day. This proved more of an issue than it would have previously - I needed help fastening jewellery, I couldn't wear the higher heels, I struggled with the cutlery and I was limited to only ONE celebratory gin.

Given the evening out before, there was no huge party on my big day itself. I knew I'd have to spend the day itself quietly. So I did.

The day after my birthday my husband and I booked a day off work and went on a day trip to Stratford-upon-Avon, one of our favourite places.
Stratford was as delightful as ever; the cafes, the shops, the RSC and the swans.

But it's clear that I'm struggling now to do the walking along the river like I used to, to consider booking a play without worrying I'll be unwell or even manage to be much of a conversationalist by the end of the trip. Poor hubby.

I realise that progression is inevitable in MS - just as I'm brutally aware that comparison is the thief of joy.

It's very, very difficult with a progressive disease to not think back to how things were - before diagnosis, five years ago, last birthday. But it's not useful, not healthy and certainly not helpful.

So while I'm not sure how my 45th birthday will be, I can only keep the words of the bard himself in mind: "With mirth and laughter let old wrinkles come."

:: You & Me Song by The Wannadies

Mirrorball

When I was at university I worked behind a bar during the holidays to earn some extra funds.

One stint I did was in a working men's club which had a 'male only' room - so as you may imagine it was quite full of eyebrow-raising comments and exaggerated machismo.

And while I never actually had anyone say to me that old cliched classic 'My wife doesn't understand me' there were certainly variations on the theme.

Of course the vast majority were just trying to get away with chatting up a young barmaid - and therefore it was likely to be the case that their wives understood them all too well.

But that doesn't take away from the fact that maybe everyone does want someone to understand.
And this is very often the case with MS and all it's confusing, frustrating, frightening and invisible symptoms.

It's nigh-on impossible to explain some of the symptoms we experience and even harder to describe the impact they can have on almost every aspect of our lives.

So I was really touched by this film made for Shift MS, a social network for MSers, which so accurately captures the day-to-day life of many of us with a diagnosis.

Everything in it is overwhelmingly familiar to me - the visual colour loss checking, the finger-to-thumb testing, the full-body weakness, the struggles with concentration and the "I'm fine" lie.

It's a really wonderful depiction of a really horrible disease and reflects what we deal with astonishingly well. Have a look.

:: Mirrorball by Elbow