I work (for now), I love, I live, I have fun. Just with wheelchairs and drugs and spasms and stuff...

4 June 2019
Invisible disability?

I’m in a wheelchair and I have an invisible disability

“Carpe Diem!” they shout, “Seize the Day!” “Yay,” we agree, “We’ll definitely make every day count!” A Grand Day Out. Or not. Except Multiple Sclerosis doesn’t quite let us work like that. It toys with us like a deranged cat with a weary mouse. We make thrilling plans – or even teensy plans – for tomorrow. We make resolutions. We have dreams and come up with crazy ideas. “This time it’s really gonna work,” we think, “I can’t let people down again.” And then, randomly, just as something starts to pan out and the coast looks clear, MS sidles up with a sly grin. “Sorry chum,” it smirks, “You’re staying in bed today. You’ve probably got enough energy for a […]
30 May 2018

World MS Day. Celebrating my Multiple Sclerosis?

So today is World MS Day. It’s been trending on twitter, hurrah! It’s also World Otter Day, and now that’s trending. Sounds much more fun. Hip hip hurrah and a round of applause!! And since I know of no cases of otters with MS, I can happily mark both without compromising my beliefs. I’m glad awareness of MS seems to be on the rise and I try to do my bit. I’m blogging here after all, I’ve had a wee waffle and the odd exchange on twitter. I’ve updated my professional LinkedIn Profile with the new skills ‘nodding off’ and ‘pretending I’m ok’. Unfortunately I haven’t come up with a genius idea like the Ice Bucket Challenge, which did so […]
8 December 2017

Bad news I was expecting still hurts

So almost on a whim it feels, we’ve moved house, moved counties, changed everything. We’ve trundled down the M3, leaving behind one of the most landlocked areas of the UK, and rented ourselves a chalet bungalow while we sell our own. The new one is just a farmer’s field away from a cliff overlooking the sea and the Isle of Wight. Dazzling sunsets, blustery nights and the distant crashing of waves. Some bleating sheep chipping in from time to time. We’ve left behind fabulous friends – though it’s been brilliant to have so many visit already (thank you!). We’ve swapped one set of family for another, and found two new schools for our boys. Change-averse curmudgeon that I am, I’m […]
27 June 2017

A guest blog

A guest blog I wrote for the lovely people at the MS Society “Catheters? Oh alright then”   How help from the continence clinic finally gave Mark some relief from bladder accidents. A lovely warm evening in 1995. A team outing, yay! I was living in France, and working for Disneyland Paris, as I had done since its 1992 opening. After a few glasses of champagne, a crowd of us hopped merrily on a bus. During the journey I suddenly felt the need to pee. Not the slow, rising need everyone normally feels after a few drinks. No, a sudden switch. From no need at all to total desperation. Like a hand hovering ominously over a tap, about to turn […]