top of page

Naomi tells us how she's not letting Fabry, or the lockdown, get in the way of future dreams

Along with everybody else, because of the lockdown, I have further issues to contend with. Luckily, I live in a house with a garden, so I can venture outside. The dramatic advent of COVID-19 changed my world from one that I knew and understood to a new and alien place. But this new world continues to promise many exciting opportunities. 

For example, I was planning to go on a luxury holiday in London with my mum this summer. The original idea was to pretend we’re filthy rich tourists who are going to have a cream tea, ride the tourist bus, have an exceedingly posh meal in a famous restaurant: all the quintessentially British activities. Unfortunately, the pandemic has brought these plans to a screeching halt. The important thing is to remember that it can’t stop you planning your future. I have extra time to brainstorm exciting adventures and to build my anticipation: I know it’s gonna be amazing when it finally happens! 

As well as planning my holiday, I’m preparing to start my degree course in the autumn. I’ve always been into the ancient world, diving into history books about Ancient Greece, Rome, and Egypt from when I was a young child. I’m looking forward to expanding my knowledge of the ancient world and satisfying my thirst for reading.    Although it’s important to plan and dream, it’s also important to have something fulfilling in the now. Most days I study, working with my teacher via the sorcery of the internet. Alongside this more formal work, I’m also writing a novel. This has allowed me to explore topics and emotions that I otherwise would have steered away from. 

I recently acquired an armchair exercise bike, allowing me to blow off some steam even though I can’t leave the house. By now, we’ve all seen many articles extolling the virtues of exercise, so I’ll try to avoid doing the same. Of course, Fabry Disease makes exercise challenging. I easily overheat and excessive exercise can aggravate pain, so for me, moderation is key. We’re all individual people, so do what works for you.    Although the world around us seems to be imploding, there’s plenty of good to be found. I’ve enjoyed listening to the birds outside, browsing museums via online tours, and socialising in social isolation.

Have a great Fabry awareness month.


bottom of page