We head for the coffee stop, parking in our second ever disability space. My brother heads in to get the coffees. I lay back, I can feel exhaustion creeping over me, I am getting heavier but I've had an 'outing'. I smile and force myself to keep my eyes open, people watching.
It’s Sunday afternoon and the foreshore is packed. Some girls about my age jog past, their long pony tails swishing rhythmically behind them and there is a quite sexy looking guy with a deep tan and sun bleached white-blonde hair rinsing off under the shower. Three very cool retro bikes with three very cool retro girls glide by. Skirts, bikes, no helmets and big square sunglasses, they look to me like the very definition of ‘carefree’. (although I am irritated by the 'no helmets' I can't help it, I'm that type)
A dark haired guy in a lime green shirt passes in front of the car, hesitates and goes to the crossing.
Oh Oh, I know him. I wonder if he has seen me, I pause considering if I have enough energy left to say hello and then decide he probably did.
‘Hey George!’ I yell out. (I have one of those loud voices that make people cringe when I yell)
George spins around confused and spots me, a girl in a cap, sunglasses, tank top swimming costume and longish boardies. Mentally I congratulate myself for choosing a tank top rather than a skimpy bikini and at the same time I remember that I haven't managed either a swim or a shower today or yesterday. Oh well.
George is an old friend from working on boats overseas. In an instant my mind flashes images of us and other friends catching up in different cities around the world. Swimming at a beach in Greece with a glass of wine in one hand, walking through the old city streets of Palma de Mallorca and the many Sunday afternoons mojito sessions with friends at a favourite beach front restaurant.
I turn and sit in the car, I can’t stand for long. We chat awkwardly for a bit. I can feel my brain slowing down, I’m exhausted from the outing at the beach. I can barely form a coherent comment about the weather.
George: ‘You don’t have to salute me, you know’ his grin is mischievous.
Confused I wonder what he is talking about, then I realise, my hand has snuck up to my eyes and is blocking the glare off the water. It’s 5.15pm, the sun is behind me and I am wearing sunglasses it's actually pretty dark.
Me: ‘oh it’s light sensitivity, I didn’t realise I was doing it’
I mumble through 10 minutes of conversation. I'm vaguely aware that I’ve missed a few obvious jokes somewhere along the line.
We organize to catch up again in a few weeks. I don't know if I will be well enough. I am really struggling to keep the conversation going, it feels like the clogs (you know, 'the clever clogs') in my brain have ground to a halt and I can barely follow what's going on.
I hope and pray that I haven’t lost the ability to banter. I want to sound like myself, my old self. The self that used to have to force herself to be quiet and count to 60 in order to give others a chance to talk.
My words have started to come out wrong, I'm mixing them up, instead of a vocabulary I seem to have a lucky dip. This was initially funny, but now is mostly depressing and dare I admit it, a bit worrying.
I’m too tired to wonder what all this means. I guess remotely at some level I know my brain doesn’t work the way it used to and that scares me but I’m too tired to process that at the moment.
Zzz zzz zz
Three days later, like clockwork, on the following Wednesday, I had the feared post ‘outing’ crash. Grey faced, with a racing heartbeat, I had a nasty bedbound seriously-ill-yucky time which (praise be to the capricious gods of me/cfs) only really lasted one and a half days.
So I don't end on too negative a note, I'd like to quickly mention that I've now had a couple of days with a couple of hours of 'myself at full speed'. Watch out...