The rollercoaster goes up and down and then up again. With immense relief I can report that Chris’s MS relapse has fixed itself. Isn’t the brain amazing? It’s been an unsettling month, with daily reminders that a neurological condition is now part of our lives.
And yet. Daily reminders, too, that we are surrounded by lovely people who send messages, bring food and make us laugh. In amongst that crowd are wise and talented neurologists who keep us right. We feel held up in many ways.
Over to Chris for an update:
Press to watch on YouTube
The future is uncertain but with moments of joy all around – we just need to seek them out. And best of all, it’s full of love.
Is January over yet? So far 2022 has involved peeking at the world through the half-closed eyes of a sick person. Boy, whatever bug arrived at our door at the end of December was a big one. We had negative Covid test results every other day, though, so I presume it was just a good old fashioned flu – the kind that leaps on top of you when you least expect it and wrestles you to the ground. It’s not fun being sick.
And for me it’s always a painful reminder of my time in hospital in 2010. (The short version? I had a blood clot in the brain then slowly got better). It’s a reminder, too, that both of us have a serious neurological condition that normally simmers under the surface, but now and then (by which I mean now) it makes its presence felt.
Over a decade ago we were both diagnosed in the same week with the same condition. A ‘medical marvel’ apparently (it’s not marvellous, incidentally). Multiple Sclerosis is a disease of the brain and spinal cord, where all our actions, thoughts, even personality, are hidden. So when something goes wrong here, it affects people in completely different ways. Those two little letters – M and S – are random, frightening and unpredictable.
We’ve pottered on since diagnosis, trying to get our heads round it, but mostly just getting on with life. For years, those two little letters have attached themselves to our bodies, merely flapping around like a price tag, otherwise not noticeable. Like all such labels, of course, the time comes when the price needs to be paid.
Relapse. A simple word full of fear and frustration. It’s the word we’re living these days and I’m so proud of Chris for producing this video to talk about his new scary symptom that affects his speech. Courageous vulnerability in action. Plus giggles and smiles, of course.
https://www.youtube.com/watch?v=-vYYOpKUPQA
We carry on. I’m off to cuddle some kittens and drink tea. All shall be well.
As I write I’m attempting to recover from a flu bug. Not the most fun start to the year. But it seems that I’m not alone with so many absences from workplaces and illness at every door (still). It’s wearying isn’t it? So I’m glad I attended a brilliant online gathering with the equally brilliant Mel Wiggins just before Christmas. (ALL of Mel’s stuff is fantastic, check it out here). Entitled ‘Honour the Year’ we women entrepreneurs were encouraged to look back on what we’d achieved and give ourselves a pat on the back. We all realised that we can do that for others more readily than for ourselves (and not just because our arms don’t bend that way).
So here’s my Gratitude Collage for 2021. Do one for yourself and take a step back and say well done me!
A reading of John O’Donohue’s wonderful poem to end this year of years. Reckon we all need some of this wisdom as we look back on 2021. Wishing you all a Happy New Year x
More haste, less speed. Good things come to those who wait. Patience is a virtue. Some days I float around with a halo over my head, serenely putting up with delays and problems with an affable shake of the head. But other days I can feel frustration build and build over the tiniest things (a bluetooth speaker that won’t connect, for instance).
What’s going on? I heard a story a while back about someone who was struggling with anxiety. He asked his mentor for coping tips and the (slow) reply came: “You must ruthlessly eliminate hurry from your life.”
I love this. But I hate it too. It’s so hard to accomplish – especially in December when the flurry of Christmas shopping, Christmas events, Christmas stress just won’t let up. I’ll throw clothes into the washing machine while trying to feed the cats while listening to a work podcast and unsurprisingly my brain will just shut down. It’s had enough.
Happy Advent
But I repeat the phrase pretty much every day, the word ‘ruthless’ is particularly appropriate. Be strict with your self-care regime. Say no if something feels wrong. Chop the dinner ingredients slowly and maybe, just maybe, a little bit of mindfulness will creep into your daily activities. Breathe out. Look around. It’s amazing what slowing down can do. And it brings patience in its wake.
Advent is the perfect time to sit and wait. Looking ahead with hope as the twinkly lights and candles brighten the dark nights. It’s delayed gratification in action. After all, what’s the rush?
