Stumbling in Flats

If there’s one thing I know about the MS community, is that when the chips are down, we all pull together.

And never more so than now.

If I’m honest, it’s strange to be doling out advice to normally-healthy people stuck at home, climbing the walls.

Yup, I’m the one now doing the ‘sad face tilt’, murmuring gentle ‘hmm hmm’s’ and suggesting ways to keep engaged and less isolated. Except now, it’s all of us in the same boat, an entire country, a huge swathe of the world.

It’s heartening to see a veritable outpouring of resources previously inaccessible to us – working and studying from home, celebrities bringing us everything from cello lessons to live work-outs and dreadful song compilations – Gal Gadot, I’m looking at you.

New programmes devised and on our telly within days. Tips and hints for staying at home are abundant, a flood of all the resources we have campaigned for over the years. Can’t get to the theatre or ballet? It’ll come to you. Same for the museums of the world, the cinema, online learning where you can pick up wood-whittling amongst many other things. Newspapers are now full of great ideas for lessening the isolation, and not before time.

Are we all disabled now, in some way?

Opinion columns are full of shocked and stunned op-ed writers aghast at being without a cleaner, a playgroup, a holiday, their Boden order. Ok. I feel your pain, although somewhat ironically.

Back to MS, and it’s awe-inspiring to see how our community has come together to keep us informed. From the MS Society, MS Trust and Shift-MS, to the Bart’s Blog, we are kept right up to date. And this is despite a truly dreadful time for charities.

I had my shielding letter on Friday, followed by a letter from my MS team yesterday. I feel cared for and protected. However, my landlord may not feel the same way, which is why I have to continue to work, with only one other person, the long-suffering Boss, as long as I can.

It’s not ideal. I miss my son terribly, and my partner. Me and The Boss are looking at each other and thinking, ‘really?’ Are we the two people we’re going to see for the next few months? I feel more sorry for him, to be honest.

I listen to his Sky TV Planner list, he listens to me wittering on about medical humanities. He wants a Baby Yoda for his birthday and I don’t quite know what to say, always aware that we are in this for the long haul, Baby Yoda or not.

You’ve all seen the news.

If you’re anything like me, you’ve been glued to it, waiting for specific advice for those of us who live with compromised immune systems.

And just like me, you’re probably disappointed.

Instead, thankfully, we have our own trusted sources to rely upon during this incredibly confusing time – MS Trust, MS Society and many others have been quick to keep us updated.

If you are finding it difficult to get out and buy food, please don’t panic. If you can, ask friends and family and if not, there has been an amazing lift in community measures to make sure no one is left behind – look into the NextDoor app and your local Facebook pages.

In the midst of all the terrible news, there are, at this moment, three good things to take away:

• First, when this is over, and you ask your Boss if you can work from home, they’ll have a much harder time saying no. If we can mobilise half a nation to work from home within a week, why has this not happened before? After all, ‘reasonable adjustments’ are enshrined in law?
• Second, self-isolation is second nature to most of us with MS and we have honed and perfected our techniques over the years since our diagnosis. Let’s share our lessons with others. I know it’s tempting to yell, ‘it’s not Christmas or a snow break!’ but be kind. They know no different. We can teach them.
• The final point, although more intangible, may be that other people might realise just how difficult it is to be at home, day after day, week after week. We weren’t moaning unnecessarily after all!

Wow.

This is unprecedented – we have no rules to follow, but let’s be kind, look out for one another and stick together.

What is the alternative?