Mr M.E.’s Birthday

Thank you to everyone who asked, Mr M.E. and I had a great time on Friday evening, so much so that we are going to have another date night next month. Mr M.E. has bought us tickets to the Addams Family at the Festival Theatre. (I had written this yesterday but as I mentioned, it seemed to disappear into the ether and I didn’t have the energy to write it again).

As Sammie (Welsh Wonder Woman or WWW) said, the analogy of Rumple from Once Upon a Time is perfect and so quite predictably, I have been paying the price since Friday and hearing “dearie” in my head every time I make a bargain with my M.E.

Last night and today I am suffering because I needed to do some ironing yesterday. My lovely helper lady, Lorraine is on a well deserved holiday in Lanzarote this week so I’m on my own……but anyway, enough blethering, I wanted to talk a little bit today about my inspiration for doing this blog.

Many of you might wonder why I have chosen to expose myself in this way, to write about deeply personal and sometimes cringeworthy things, to open myself up to criticisms and embarrassment, well I’ll tell ya!

Around a year ago, I was lucky enough to find out about (and wangle myself an invitation to) a workshop being run by Action for M.E. at the Storytelling Centre in Edinburgh. It was called Living and Learning with M.E. and they were following up the daytime workshop with an evening event full of people’s stories, with Stuart Murdoch from Belle and Sebastian as a guest speaker.

I wasn’t sure that I could make it through a day and an evening, I knew I would be tired and struggle to keep myself in check (see previous post on uncontrollable emotions) but I really wanted to go so I pushed myself to do it.

The workshop was run by a Canadian Storytelling Expert called Michael Williams and he taught us that opening up the curtains and letting people see in is a powerful way to humanise the disease and our experiences for those who don’t understand what it’s like. He also spoke of the history and power of storytelling as an art form and as a tool for easing emotional pain and social inclusion.

Mr M.E. ended up working late that night so I asked my mum in law, Di, if she wanted to come with me to the event because I really couldn’t manage alone, and luckily she agreed.

It was profound for both of us.

Everyone in that room understood me and I understood them. I felt oddly part of a community for the first time in ages and their stories were brave and breathtaking. Mr Murdoch was a warm and funny speaker but there was one man, who read his wife’s story (because she was too ill to attend) that resonated so deeply with me that I started crying then and I could hardly stop or breathe until we got home. Being exhausted may also have had a part to play, of course.

Di held my arm as I cried and I felt the dawning realisation sweep over her. We had always been close but this brought us closer. Never again has she blamed my symptoms on the fact I was “in my forties now”. Not that I ever took offence but the frustration I had in trying to communicate about what was going on, just vanished. We had a whole new language with gorillas and spoons and other people’s journeys.

It planted a seed.

Several times over the past year, I have looked for other ways to get involved but nothing presented itself. However, Mr M.E. has never given up on his ridiculously biased idea that I should write because I am “good at articulating emotion and ideas in a way that everyone can understand”.

So here I am, almost a year later, writing this blog. Doing what Michael taught us and what Mr M.E. says I am a ‘natural at’.

I don’t know if it will be any good in the long run, I don’t know where the road will take us, or if it will fizzle out but we’re starting something here, you and me. We’re going on a journey. And I hope it helps someone, like it has help me.

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