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STRIPEYSOCKS BLOG (not part of the book!)

The Day After Monday


This is The Day After Monday, ME Awareness Day. On Saturday I worked on my article deconstructing the nightmare afflicting families accused of child abuse or neglect, and threatened with having their children taken and put into psychiatric units for physiotherapy. I want that published as soon as possible. It needs to be out there, working for families, working for the ME Community in general. I arranged my references. I reworked the article. I converted the references into Harvard format. Porridge-brain returned. Where did Saturday go? I went to bed. Sunday seemed to pass in a blur. I did some edits and some more edits, and sent off the final draft. I think I watched some tv. My brain woke up again. As it does at night. Getting into the Title Page and Abstract, by 1.30am I was at a good place to stop. It was The Night before The Day. I didn't sleep till 3.30am. Only an hour or two later than usual. Not too bad then.

I met some people on the morning of The Day. I had accidentally committed myself to an engagement on – wait for it - The Same Day. A short game clinic, gentle putting and chipping, a bit of pitching, to keep the blood flowing and the osteoporosis away, with my tutor and a group of other Ladies. I didn't like to let them down. I went. Well I reasoned, it's only five minutes' drive and I should be grateful I can do things like that after so many years. The years in bed, the unstoppable pain, the assembling my limbs in a wheelchair, the times when I said things like “I'm going to have a bath to prove I can wash myself.” I can hardly play in the weekend when it's crowded and everyone is rushing around. People often say “Have a nice weekend,” not realising that this is prime work time, when others are frenetically cluttering up shops and roads. I need to take my time - my time - at everything. “Have a nice Bank Holiday. Going out?” You are joking. Pick up a few things in the village and shut the door.

This clinic will freshen my mind for the afternoon's work. The computer is off-limits. After this, I'll rest, I'll get my brain in some semblance of order before #AskJCC, my 4pm Twitter Q&A. Oh. It's a palpitations morning. Lovely. By the time the clinic is over, I am on autopilot. Unlike autocorrect, it doesn't generally make inappropriate assumptions. I eat fruit and drink tea. I start driving home. Oh, I forgot the milk. I turn the car round in a farm driveway. (Later I see that my trolley token, the pretty one with the pink daisy, is gone. It's not in the car. I probably dropped it in the car park. As you do.)

A friend who can see my exhaustion kindly takes me down to the tearoom at the river. We stroll along the bank, past the narrowboats, some gleaming with bright painted flowers, some sadly left not knowing when they might next be attended to. We listen to the birds. And what a lot of birds there are. Tweeting. Of course, tweeting. I'm not going to be allowed to forget that. I check my phone. As you do.

A bedraggled dog comes sniffing up, its owner calling after it.
“Stop that, get away from the people” (apologetically). “Sorry.”

Then we have tea. A big mug, sitting by the lock, trees waving in the wind, the rushing of the weir loud and wet. My phone dings. And dings. And dings. I attend to it. Of course. Technology doesn't 'get' the words 'rest' or 'break' or 'chill'. Why should it? It wasn't designed to. It was designed to do stuff, all the time, forever and forever and forever. Sometimes I feel like that myself.

By 3.30 my brain is back in gear. Office. Chair. Screen. I type on the computer and read direct messages on the tablet. A good session is had by all. Including me. No, really. A good session. Autocorrect rears its head at one point but I issue my own correction next day. Today, in fact.

And then my kitchen scissors were gone. I knew they were gone the Other Day, when they first went missing, but I hadn't thought they would still be gone. They would, somehow, reappear. They haven't. So I put aside everything else and wrote this:

Ode to #MyalgicE

Oh I've lost my kitchen scissors from the drawer
And I KNOW that they were sitting there before
If I change my ME hashtag
Will they turn up in the washbag?
For #MyalgicE's the culprit, that's for sure.

I tweeted it. I didn't include the headache. It wouldn't scan.

Happy Day After ME Awareness Day. Normal service will be resumed as soon as possible.

Jane Colby