It’s 8 o’clock in the evening and I’ve only just got up. I need to write about what happened last night but I don’t really know where to begin. Exactly seventeen hours ago my longest ever ‘ticcing fit’ finally came to an end. It lasted seven hours and the range of experiences and emotions involved are difficult to describe.
So I’ll start at the beginning, exactly twenty-four hours ago, and break it down hour-by-hour.
I was hanging out at home watching TV with Fat Sister. I’ve not been very well again recently and have had a second nasty bout of tonsillitis. Whenever I’m ill my fits increase so it wasn’t a surprise when my body started to contort vigorously.
8:01pm: As I started to fit I fell off the sofa and hit the floor with a thud. Fat Sister was quick to help. This situation’s familiar to us both and although the fit seemed fairly intense, neither of us was particularly worried by it. Fat Sister’s support always feels light-hearted and this was no exception. I was joking about how long it took her to remove a cushion from my face and she was laughing because my tics reminded her of her First Aid ABC: Airway, Biscuit, Circulation. Forty minutes in she gave me some emergency medication and kindly turned me round so I could see closing ceremony of the Paralympics on the TV.
We were reaching an hour when I announced I needed the loo. Fat Sister groaned and started to move me along the hallway to the bathroom. Halfway there the fit intensified and she gave me a look of slight desperation and said, ‘I haven’t risk-assessed this very well, have I?’ We eventually made it there and back safely (if not elegantly). I’d not been able to get my trousers up after having a wee so my sister took them off me completely. As she helped me back along the hall my tics were singing: “I’m only partially clothed, ee-eye, ee-eye-oh!”
9:00pm: Nic, my evening support worker arrived and Fat Sister made a dash for the door to let her in. I’d got jogging bottoms on by this point and was back on the sofa. The emergency medication had lowered the intensity a bit, but because the fit hadn’t stopped she gave me a second dose. By half past nine it was a bit calmer, so Fat Sister said goodnight and headed home.
10:00pm: The fit had now being going on for two hours. Nic gave me the final dose of emergency medication. The last one’s a lot bigger and is intended to stop the fit in its tracks. After that, it’s unsafe to give me any more unless I’m in a medical setting.
Whenever I get to the third dose, which is very unusual, I know if it doesn’t work I’ll either have to ride it out or go to hospital. On this occasion it had only a slight impact, calming my movements a little, but I was still moving about constantly.
11:00pm: Three hours in and I was getting exhausted and distressed. Fifteen minutes later the fit got more intense again and I began to feel desperate and upset.
Leftwing Idiot and Poppy who’d been out for the evening arrived at about half past, and I felt calmer knowing they were there. Leftwing Idiot gave me my usual night-time medication a bit early in the hope it would settle things down.
12:00pm: It’d now been four hours since the fit started. Leftwing Idiot and I made an agreement that if I was still fitting for another half hour he’d call an ambulance. Fifteen minutes later I asked him to call one straightaway. I’d had enough – I was tired and losing my speech again, my movements were forceful and relentless, and I was desperately uncomfortable.
A paramedic was with us within minutes and an ambulance crew arrived shortly afterwards. They acted quickly, giving me more medication and oxygen. As soon as they felt it was safe, they put me on a stretcher and got me into the ambulance. It was a hot night and the fresh air on my skin as we went outside was a relief.
1:00am Things must have been bad because my I didn’t over-react to the flashing lights and the siren, but the fit carried on regardless. We got to King’s very quickly and I was taken into the resuscitation ward. The paramedic who’d been with me for the last hour stayed and held my head still until the doctors had a clear plan for getting my body back under control. I was treated with incredible care and compassion and I appreciated the time they took to tell me what was happening.
2:00am: The doctor managing my care hadn’t been able to find a record of my admission in similar circumstances eleven months ago. Fortunately, my tics make me quite memorable and one of the nurses remembered me and was able to say what had worked last time. I was promptly given an injection of a powerful medication in my thigh. Forty-five minutes later, after almost seven hours, I stopped moving and the fit ended.
The medication left me heavily sedated and I drifted in and out of sleep for the next few hours while Leftwing Idiot sat and waited. Once the doctors were satisfied the fit had ended and I was alert enough to leave, we headed home in a cab. I wasn’t wearing any shoes because we’d come out in such a rush, so they gave me a pair of thick red hospital socks complete with grippy soles.
6:30am I can’t ever remember feeling so relieved to be in bed. I fell asleep instantly and stayed that way for most of today. Bunny lay by my side watching DVDs and made sure I was alright.
I’ve not had a fit that’s needed hospital treatment since last October, which was shortly after I started having them every day. Since then I’ve become relatively accustomed to the sudden loss of speech and control of my body. Despite this, at the start of every fit, no matter how mild or severe, I still have a flash of fear – what if this one doesn’t stop?
Last night’s experience has reassured me that even if the fit doesn’t stop at home and I have to go to hospital, I’ll be treated with speed, care and compassion. I was well looked after, not just by the paramedics, doctors and nurses but, as ever, by my friends and family as well.
When I’d started watching the Paralympic closing ceremony all those hours ago, I had no idea I’d be participating in an exhausting marathon of my own. I deserve a medal!