“Although it took a while to shake off the fatigue, I was OK.” A disability advocate shares her COVID story

Five days before Christmas, my family began being infected by COVID. A week later and all five of us had it in varying degrees, each experiencing different symptoms every day. During our collective isolation we moved in loops, from the kitchen to our beds and back again, depending on how we felt. When I started feeling unwell on Boxing Day, by way of a thundering headache that felt as though someone was crushing my skull, I was terrified.

I’d spent the better part of two years absorbing the idea that getting COVID as a disabled person would be a disaster. I’d watched in horror as those in power ignored the fears of our community and continued to forge ahead, never leaving any breathing room for the many vulnerable and immunocompromised in our society who were consistently being presented with the idea that their lives were somehow less valuable.

Stories of perfectly healthy people having their bodies and brains forever changed by this disease and long COVID – to the point that they would now identify as disabled – floated around in my head as I rode the waves of nausea, muscle pain and fatigue.

If that could happen to them, what might happen to me, as someone who already lives with a physical disability?

I was also worried that the Omicron variant – with its markers of muscle aches, fatigue, headaches, and the like – sounded very similar to the baseline I live with, 24/7, as a result of cerebral palsy. How would I know if it was COVID or a pain/fatigue flare? What if, because I didn’t know I had it, I accidentally and unintentionally gave it to someone else?

In the end, it turned out I very much did know the difference between what was normal for me, and COVID. The crushing headaches, bones feeling like they were on fire and pain every time I moved, plus the fatigue that never seemed to ease, were unlike anything I’d felt before. 

Keeping calm during those days – and willing myself not to panic, as I allowed my body to rest more than it ever had – were probably my biggest challenges.

I constantly had to remind myself that, prior to contracting COVID, I’d done all I could to be safe. I was double vaccinated and had been extremely responsible in my social distancing, mask-wearing and avoided leaving the house at all. I am also one of the rare and lucky few people with cerebral palsy who doesn’t have any underlying conditions.

Armed with the facts, and the fact that, thankfully, none of the symptoms I or any of my family experienced were severe or scary, it was much easier to calm down. No-one in my family needed to rely on the hospital system for medical care. Our symptoms could be comfortably managed at home. And after a few days, as the symptoms cleared up, I was able to get back into the swing of my normal life. 

Although it took a while to shake off the fatigue, I was OK.

Two months down the track, there’s no part of my body adversely affected by having had COVID. I know how lucky that makes me, to have had my experience with this disease end happily and without cost, and I’m incredibly grateful. It’s also why it felt so important to share my experience, a rare bloom of hope among what can be a scary and overwhelming cycle of stories. Not everything is doom and despair, you guys. Hang in there.