Day 12 of quarantine: tasked with writing a blog to share with fellow Ataxians, “How am I coping?” – well I’d like to think I am, approaching 10 years since I was diagnosed with FA.
This strange new reality feels like a temporary apocalypse, an unwelcome interruption to our daily norms. Unaware of what day it is, my routine now consists of live pilates classes, reading, planning what to eat and copious phone calls – all done with a constant supply of snacks (doesn’t sound too bad). When the government announced we were officially in a pandemic, a wave of anxiety washed over me. Will my condition deteriorate without the gym to attend? Would my 84-year old grandma, who is currently in hospital, be okay? How can I afford rent? All factors outside of our control.
Just over a week ago I was still working, blissfully unaware it was my last opportunity to drink gin outside of my home. Luckily it was my birthday last month so the stockpile was replenished: tonic on the other hand is rather scarce. It’s the last day of March and my grey hairs are out in full force – zero hair dye available – like ataxia the future is uncertain and we are forced to take each day as it comes. This isn’t necessarily a bad thing, it’s a chance to take a step back and prioritise what’s important: Health and happiness.
Despite waiting for Boris Johnson to make his daily announcement, like I used to wait for Love Island 2019 at 9pm, the news can be full of negativity and thus damaging to our mental health. I battle with the fear of just existing without a purpose, so whilst I am proactively setting myself a goal for the day, in the current climate I don’t feel as much pressure to ‘conquer the world’. Ataxia or not, most people are experiencing similar anxieties and as each day passes more plans are cancelled: my brother had trained to run the Manchester Marathon for Ataxia UK in a few days, alas he is still committed to running it later in the year. Every day is now spent in the comfort of my gym attire; the nice thing is that no one is judging you.
Even though our lives may be on hold, the fresh air keeps us somewhat sane. There is so much to be grateful for: For me today that’s the Sainsbury’s order, living outside of London and owning an extremely comfortable bed. We don’t know how long this unpredictable time will last, so indeed the hardest part may be readjusting to a new reality once this initial phase is over. Like most of the UK population the best thing we can do right now is stay at home, protect the NHS and save lives.