It’s my fitiversary. Exactly a year ago today I woke up having a ‘ticcing fit’, and I’ve had at least two a day ever since. As I got dressed this morning I reached for a pair of tracksuit bottoms, but immediately decided against them because they didn’t seem suitable attire for a fitiversary. But what is?
Most other landmark occasions have traditions or expectations attached: A key for a 21st birthday, rubies for 40 years of marriage, candles, cake, champagne, speeches and rings for everything else. I realised with glee that I could set my own rules for this anniversary. I put down the tracky-b’s and put on a pair of sequined leggings – my special day had begun.
The fits had been happening on and off before last October, but not every day. I used to call them the dying fish. But October 21st 2011 was my first day of many fits. I woke up moving frantically, unable to speak and making a repetitive ‘howing’ noise. This and the following few days were indescribably frightening. My hope that it was a passing phase soon faded, and I was left feeling desperate.
The early weeks were the toughest – I had no idea how this development would unfold or what impact it would have on my life. But once I’d accepted what was happening, got the right support, and worked out a plan, things began to feel more hopeful.
The diversity of this list of places is reassuring and shows the fits haven’t restricted what I’ve been able to do in the way I’d first feared. To start with it was hard to imagine how having a fit in public could be safe, but the introduction of my emergency bag made this much easier. This bag stays with me at all times and means I’ve got everything I need to stay safe. It contains:
A record sheet and pen for noting down the length and intensity of each fit
A copy of my care plan that outlines what needs to be done when I have a fit
A stopwatch for keeping track of how long a fit lasts
A pair of big, heavy-duty boxing gloves so my hands don’t get friction burns when I move about
My helmet for when cushions and soft surfaces are in short supply
A pair of arm guards
A ‘No Ambulance Please’ sign
Antiseptic wipes, wet wipes and tissues.
A chewy shape which goes in my mouth if I’m biting my lip
A bottle of water with a sports cap
Emergency money to make sure I can get home from unexpected trips to the hospital
Staying safe’s only one part of managing a ticcing fit in public. The reactions of passers-by are even less predictable than the fits themselves. I’ve been shown incredible kindness, advised about strange cures, and on more than one occasion been prayed over.
The fits have made it into my dreams and with my permission they’ve been filmed. They’ve meant that in the last year I’ve not been alone on any occasion for more than a couple of hours. Thinking about this yesterday I realised that I’ve never slept at the castle without someone else being there too. It’s a testimony to the skilled and sensitive support I’ve been given over the last year that I’ve been able to hold on to my sense of independence, and that I rarely feel frustrated or hemmed in. I’ve come to appreciate the importance of planning my time and I feel lucky I’ve got set times to hang out with so many great people each week.
I’ve had 2,012 fits that took up 450 hours in all. That’s very nearly 20 whole days! One in five started when I was asleep, two ended up with me being admitted to hospital – and one happened on a log flume
I once turned all the data on my fits into lottery numbers, but now, a year in, I’m going to give it all to my friend Kev who’s going to transform 365 days of fits into music. Touretteshero’s about finding and sharing the creativity of tics and I’m pleased that even the most challenging and painful of them can contribute to this process.
So how do you celebrate a fitiversary? I chose to spend mine with Leftwing Idiot, wearing sparkly leggings, eating a delicious pub lunch rounded off with luxury hot chocolate, and an evening of back-to-back TV comedies.
To everyone who’s helped and supported me in last year, thank you, and happy fitiversary.