That’s my secret, Cap.
I don’t know what happened. I awoke this morning after a good night of sleep, earlier than usual, to get to work by 9am. I’d got my makeup right, a gentle pinky/purple two-tone shadow with a blue liner, black mascara, a little blush high on the cheek, nude lip. I picked my outfit, straight black trousers with a thin silver pinstripe and a slim black top, like I’d landed a walk-on role in “Sex & the City” as Charlotte’s speakeasy poet friend…
When getting myself ready I moved impressively fast, precisely. My fingers nimble on my eyeliner, my arms strong, my legs fully beneath me. I felt confident, determined, and I got out the door on time to get to work well in advance of my first meeting. I was so early that I had time to sit and rest for a beat on a park bench beneath the trees, listening to Ardra Sheppherd’s new book Fallosophy, totally recommended.
The Rocinante, my trusty wheelchair, has a flat tyre and is due to be serviced. She’s out of commission and I don’t have her with me. Honestly, I didn’t think I’d need her, it was warm but not hot. I’d slept well. I did everything right and all signs pointed to a strong, successful day.
But even the sunniest day can hide a storm.
Standing from the park bench I notice something isn’t right. My legs are shakier than they should be. Moving around takes more effort as I struggle to find my balance. I widen my stance a little to compensate, just a little. Alright my stance was super wide. I looked ready to push into a saloon to order a finger of whiskey.
My bladder immediately begins to protest. I receive the telltale neurological message that I’m full and need to empty. What used to be a polite little anticipatory request to add a pitstop to our plan for the morning has now become a sudden and urgent evacuation alarm ringing throughout my brain. I head to the toilet, deflate onto the seat, and send the message to empty the bladder. I get a response that no one down there knows why I’m sitting down and there’s nothing to empty. Apparently I’m wasting everyone’s precious time, and need to read my neurological messages more carefully in the future.
I pull myself together, head to my meeting and right outside the door I hear the evacuation alarm and get a brain email from my frustrated bladder asking why I haven’t found a toilet yet. Don’t I hear the alarms going off?!?
The meeting begins and almost immediately all the MS-touched systems start to fail. The tinnitus in my ear loudens, my vision becomes unclear, my fingers numb. It’s like the stress of the meeting, mild as it is, has toppled the jenga tower I’d been unknowingly stacking all morning.
And fatigue follows.
Most of these challenges make climbing the hillside of this meeting difficult. Bladder issues make the climb steeper, vision problems are a strong wind, tinnitus is heavy rainfall. These symptoms make climbing harder, but fatigue is like getting struck by lightning. I can’t climb with a million volts coursing through me, and I can’t attend to a meeting when fatigue is this severe.
But it’s only 9.30 and our meeting is due to finish at 5pm, and short of pulling the plug totally, which I imagine would involve me yanking a fire alarm, shrugging my shoulders, and diving out of the nearest open window, I have to endure. I want to endure. These meetings are rare, special, a chance to be with people I like, and I don’t want to leave.
So I sit, I focus, and I wait for the waters of my fatigue, currently threatening to wash me away entirely, to recede.
We take a break for coffee and food. This poses two new challenges. If I drink caffeine it’ll help with my fatigue but caffeine is a diuretic and will fill my bladder, forcing me to use more catheters. I only have four keg-tappers for the day, I’ve already used one, and I’ll need another tonight. Also, if I drink something hot it’ll spike my temperature and I’ll temporarily lose the ability to walk. It’s a seven-minute walk to the coffee place and I don’t have the Rocinante. 14 minutes there and back is already right at the limit of my walking stamina. I opt to stick with water, stay as boringly hydrated as I can.
I manage the whole day in this meeting, something I’m actively surprised by. When I get home I drag my ass through the door like an aging, oversized gummy bear sitting in summer sun and slowly melt onto the couch.
I rest and gradually restore my strength. A message pings on my phone from a long-time friend who had seen me during the day.
‘You looked really tired today’
She knows me so well that she’s one of the few people who can say something like this without causing even the smallest offence. I actually cherish these friendships, you know a true friend when they can tell you you’re looking tired and all you feel is the warmth of their concern.
And she’s right. Today destroyed me. I’m also glad of it. Being in the room with people I like, working together, like public speaking, like the podcast, is a privilege I will not take for granted. I know that the ability to do these things is by no means guaranteed in my position. My daily workouts, my friendships, the doctors and nurses who take such good care of me in an underfunded and sorely needed health system, my best friend Caz, all made this difficult day possible. I’m so grateful I could weep. I’ll keep doing this for as long as I’m able, and against all odds and for as long as I can I’ll spend my energy on the people and activities I love willingly.
I smile at my phone and tap out a reply: ‘That’s my secret, Cap…’