all the activity

It has been the busiest month. There has been much doing and much recovering. I’m hoping that I’m beginning to be able to look round me a little again, and consider the rest of the world. But I may just go back to sleep.

For Rare Disease Day, we’d had the bright idea of organising both a conference and a reception at Parliament Buildings. Two venues, 2 sets of speakers, 2 programmes (& the large print versions), 2 registration lists, 2 sets of accessible parking to register for, 2 sets of presentations, 2 cakes. Much for us to juggle. The brightness of the idea faded, but we persevered and, somehow, it all worked well.

At the time of peak organising/ chaos, my laptop died. Windows 10 ate the operating system. There had been clues, ongoing niggles, but I was too busy to do anything about it. Ha! It showed me…

All the things I’d been juggling had to get passed over to other people, who had to start from scratch again, because everything was stuck on the dead machine in the computer fixers. Our PR whizz got ill and couldn’t attend. Some of the presentations hadn’t been rescued and had to be hunted out behind the scenes. I collected boxes and banners from the printer in the early morning, and then  wandered round in circles, putting a pen and some paper at each table place. One of us had to sort out the tech for everybody else (our tech volunteer had a forgotten hospital appointment), including the actual tech speakers. And I skipped round the room, knocking out all the timings, by making sure that everybody was holding hands, and that each table was holding hands with another, so that each of us would be connected, because we can’t do rare disease on our own.

And after inspiring speakers and good food, we picked up and moved on, a caravan of stubborn, enthusiastic folk, ready to talk to the politicians. I sought out the MLAs who’d answered my emails and agreed that we’d keep in touch. They may never escape. I was glad to sit down in time, happily beside a curious MLA. He asked lots of questions and got lots of answers. I’d gone to say hello to old friends, and parked there for most of the evening, before Ditzy scooped me up and brought me home.


It was days later before I surfaced. Eventually, the laptop returned from hospital, and I got to prepare for 3 events the following week. Talking to first year medical students about living with chronic illness (turns out it’s harder to say it out loud than it is to write down here); talking to 5th year medical students about rare disease & patient empowerment; and ohnoreallywhatme a reading with poets, in a proper library, to mark International Women’s Day. They read poems and I read blog posts and it was all scary/ weird/ fun. (Again, easier to write than to say out loud, in public.)


Now, I can look forward. To more to heading west to the caravan, to longer days, to rest, to a flurry of dancing events which will require taxiing and (yikes!) fake tan.

Spring is visible. I’m looking out of my burrow.


Thanks to Maria McManus for inviting me to take part in Women Aloud and for the photograph.


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