I couldn’t sleep. I had insomnia at both ends of the night, one of the features of M.E that I struggle with the most. I finally gave up around 6am and, with my stomach also awake, I decided to get up, go downstairs, make myself a cup of tea and treat myself to some ginger biscuits.
That may sound like a mundane anecdote but these days going downstairs and making my own tea is somewhat of a marvellous feat to be celebrated rather than a forgetten act of the everyday. But what was not the everyday was when I went back to bed with my stash of biscuits and mug of tea, and a memory flashed into my mind. My sister and I, as kids, delving into a secret treasure – our Grandma and Grandad’s biscuit tin.
I have been angry since March. It’s not a normal state for me. I am usually the one that finds the silver lining, the humour and then the gratitude when things get bad. This time though I haven’t been able to. There has been too much to be angry about – being injured by the vaccine, the deterioration of my condition, the ongoing ignorance and inertia of the medical profession and, of course, the delay of the NICE guidelines. But being this angry and this ill does not work forever and right now, I am too depleted to find that spark of rage again.
I need to find another way to live through this time in my life and this morning the ginger biscuits gave me a clue. The memory that flashed into my mind was one of a shared joy between my sister and I. The smell and taste of the ginger, the slight fizz on the tongue, it took me back to the days we stay over at our grandparents’ house and we would be so excited to wake up and climb into their bed ready for tea and biscuits. Nothing mattered more to us then, nothing made us happier then than that moment.
I want to get back to this now. Focus what energy I have on the moments, even if it is only a micromoment, of deep joy. Not an easy task when you are too weak to function, in pain and feel stuck in a loop of rest-eat-sleep. But there has to be, there must be some moments in each day that I can find. It might be more times than not that those moments come from memories, possibly childhood experiences of what seems not very much at all but is everything at the same time. So I wrote this poem as a reminder to spend some of my energy on remembering joy.
If only this was the answer, though. I know it’s not and I want people with M.E to understand this is a coping mechanism and not anything close to a cure. To expect us to cure ourselves with wishful thinking, such as gratitude and a positive outlook, is as ignorant as the medical profession who dismiss our symptoms, but for today I need that moment of joy to keep going. I wish those moments for you too. If you can, hold on to them tight.
Love and light Kirstie 💖✨💖
Remember when we would wake up at Grandma and Grandad’s house?
You didn’t seem that much older than me then.
We’d climb into their bed
Grandad would go down for his pipe
Grandma would start Sunday dinner
And we would open the biscuit tin.
It was light blue wasn’t it? With Greek figures in white? Our own secret treasure chest. Delivered with tea and blankets.
Custard creams, ginger snaps, bourbons, even shortbread if we were lucky,
and they’d just come back from a trip to the Lochs.
Sometimes, especially when it was cold, they’d stay in bed with us. Me, next to Grandma; you, next to Grandad. We’d open the tin together.
I still remember the sound as the metal met the air. The slight pull of the lid to open it. Our delight was never knowing exactly what was inside.
Your favourites, I think, were the ginger ones.
Like Grandad. You never minded his pipe either.