Our volunteer Garry shares his thoughts on the day before International Long Covid Awareness Day
Long Covid Awareness Day is nearly here. Those of us living with Long Covid, we are aware of it every day. It's within us, almost serpentine. Every day, reflections I look back I know I shouldn't, back to 2020, back to 2019 when I was free, spontaneous. Taking, to be honest, most things for granted, like the ability to breathe without thinking about every breath.
Then it came... December 2020. I believe I am second wave. The waves that year felt like tsunamis. Blisters on my face, behind my ears from wearing PPE, holding the hands of loved ones as they struggled to breathe. Then it was my time, my time, why me? Why not me? I had survived nearly a year. I'll not remember Christmas 2020.
2020: everything changed
2021 is a bit of blur, my mind has blocked out the majority of the pain. I found a lifeline. I researched everything I could, I looked down at a body I didn't recognise me. I was lost in this new world, there was no compass or lodestar to take me out of this fight.
2021: The year I grieved for myself. This was the year I started to reflect on me, what was happening, what happened to me, where had I gone. A little voice within, almost suffocated my the infection "I'm still here, I'm fighting what you cannot see, you just feel."
In February of 2021, my diagnosis came, Long Covid. I didn't know what that was. I wasn't aware of the language I was reading, words, oh so many words but the infection was tearing at my double helix, wanting to take me away. The very fabric of my being felt like it was burning, fighting, fighting what was within. I wasn't going to allow that to happen, I wasn't giving up on me. 2021, the year I was telling my Doctor what to do, 2021 thanks to Long Covid SOS I found a community, that community was my life, it gave me life. I wasn't alone, the knowledge that passed between us, the knowledge and, I don't have the words, but the bravery of those from wave one, my heart, my life goes out to those brave souls that came together.
2022: The year I started to put myself together. Covid wanted a fight. It got one.
The year of...? Community. My life was my community, I am me today because of them, friendships have been formed, compassion, empathy, pacing, shared lived experience. We helped each other, we were our own subject matter experts - who knows Long Covid better than those who suffer from it? 2022, the year I had to accept, 2021 too I imagine, accept. I hated acceptance but every time I fought, the serpentine force won and I'd crash. I had fatigue, shortness of breathe, my brain turned to sludge, cognitive impairment. I had to learn a new awareness deeper than I have before, I had to listen to my body, listen, and plan every single heartbeat of energy I had. This is how we survive. We adapt. At this point, there wasn't a cure or any treatment. Today, we still wait.
2023: The year of advocacy. Still battling away, the community changed, some people had progressed, some got worse, some within the Long Covid community became stars in the night-time sky. Lost forever, but always remembered by their loved ones left behind.
Awareness is everything, self awareness, community awareness, social awareness, that question 'why me?' It still haunts me. But in my advocacy and the advocacy of others, awareness will always be there, not just for one day, but for every day we have.
We step into 2024, March 14th , one day away from International Long Covid Awareness Day.
The global community united, hands reaching out across the world. We understand, we are aware. Please don't let this happen to you. I am tired of telling my son, sorry I can't, not today. "Is it your chest, Daddy?" A tear falls. I dig deep, my heart broken. This is the reality of Long Covid. And yet I still live in hope. I'm not giving up on me, or my community.