Smell is one of the most evocative senses given its ability to take you viscerally to a time and place. This was unfortunate for me a couple of nights ago given how challenging the day before had been; a day I didn’t really want to keep reliving. I went to bed the night after the event  and every time I turned over I could smell, on the duvet and pillow, medical grade plastic and the sweet chalky smell of oxygen being pumped through a face mask. Each of these smells took me back to the morning when my bedroom was full paramedics, called to deal with another epileptic fit. 

Thankfully Pam was home and able to translate my stuttered mumblings as I tried to answer important medical questions with a tongue that felt like it had grown to the size of a balloon. I was wheeled through the drizzle to be blue-lighted to Brighton A&E. This time I was fully conscious throughout the process and think I remember everything. 

The short story is that it was just another epileptic fit and nothing more worrying, although we’re waiting for scans to confirm this. But it was terrifying to experience; I couldn’t speak properly and my mouth filled with saliva that I couldn’t swallow and was spraying into the oxygen mask because the fit was causing my lips to open and shut, to flabber around. It was undignified and my main concern was to wipe away the saliva dribbling down my cheek, but I couldn’t move my left hand properly to do that, or make myself understood that this was what I was trying to do. All of this was eased by having Pam in the room, her hand on my forehead made everything a little bit better. 

It became more terrifying when I realised that the paramedics were doing tests to try to rule out a stroke and to confirm that all I was having was an epileptic fit. 

We spent 12 hours in a very busy A&E. It was obvious that the staff were run ragged trying to find beds for everyone ‘racked up’ (a term I heard one doctor use) in the corridors. We were in the middle of an open area on the edge of a corridor. It was hard to sleep because the lights were very bright, there was a lot of noise, particularly warning beeps from monitors on patients (and no privacy for intimate medical conversations). The corridor was also a heavy traffic area, my bed was constantly bumped. I was desperately tired; I needed to sleep off the trauma of the fit and the length of the day, but couldn’t because of all of the noise and motion. It took ages to get the paperwork to be discharged (and free up a space in A&E that was obviously needed). This is no criticism of the staff. There clearly weren’t enough of them, a problem undoubtedly caused by underinvestment by the government who don’t seem to care about the impact on patients or NHS staff. 

Just before I was discharged, we saw the paramedic crew who brought us into A&E. They were at the end of a 10 hour shift and definitely not being paid for the calm professionalism they brought to the process for me. They made me feel safe and properly cared for. Being able to thank them personally was brilliant, but they shouldn’t have been there at that time to get such scant comfort. How do they manage family life? It’s hard enough being a patient with such unpredictable escapades. Our NHS staff need a better deal and much more than heartfelt thank yous from patients. 

I’m currently fine, just very tired and I don’t fully trust my body not let me down again. I’m currently on edge that every little twinge is another fit coming on. Anyway, it could be worse, much worse, I’m still able to be up and about, enjoy having the family back for Christmas. I will be off work for longer than I’d like.

Picture credit: Close up of a snow leopard nose from Blacktigersdream

Date: 23 December 2023