Since having Covid in March and April of this year, it’s a question I’ve been asked countless times. I no longer know how to answer it. I am different, that is what is certain. I have had to learn to stop, to pace, to not achieve and, with no hint of Disney, let it go.
I have what is being termed Long Covid. Right now, I’m waiting on a referral to a Long Covid clinic, eight months after crushing breathlessness and tingling fingers brought paramedics out and a nerve-wracking trip to St James’ Hospital.
In those eight months I have had to build a new relationship with my body, come to new agreements on what it can do and what it can’t. And, to be blunt, it’s been a downward spiral on a pretty shit rollercoaster.
The year has been a test of endurance for us all, but for many of us deeply and personally affected by the pandemic it’s a marathon we literally don’t have the energy to run. During the summer my main concern was the continuing breathlessness; not being able to walk up a slope without stopping, needing multiple rests after a fairly flat walk, but in the last few months that has given way to aching muscles, headaches, neck pain, exhaustion, brain fog and dizziness.
It’s meant a drastic reduction in what I do outside of client work, letting go of things I love to do, like Charleston dancing, and accepting that I can do this or that, not both. It’s meant, somewhat ironically, putting work on the DisAbility PR website on the back burner, it’s meant disengaging from online chats and groups to give my brain and body the space and focus to do the work which earns money.
As PR professionals, we are known for being switched on, able to think on our feet and for getting shit done. Learning to cope with Long Covid or post-viral fatigue has made me reconsider how I work, when I work and what I choose to focus on. I am grieving for the person I was in February, unsure if that person is coming back or wondering if this is my own new normal. I am frustrated at needing to take a step back from the things I wanted to drive forward. I’ve had to step back from writing blogs, from continuing with an ebook I want to write. I’ve had to step back, full stop.
The impact is physical and mental – it is scary. It’s overwhelming to process the fact that my body which allowed me to dance, swim, walk, work and many other things as I pleased is now protesting loudly and at times, point blank refusing to function at all. My mind, which has allowed me to think clearly and strategically on problems large and small, at times struggles for basic words. The idea of conserving energy, guarding it closely and deciding whether an activity is worth the cost is a new concept which I’m struggling to enact. The damage this virus has done runs deep.
Studies of Long Covid are finding parallels with ME/CFS, to the extent that ME Action has produced a series of guides and advice to help those both recovering from Covid-19 and those going through so-called Long Covid.
I am grateful for the advice and support given to me by friends with ME/CFS, from how to manage the aches and pains to signposting me to ME Action, and to ME Action itself for stepping up and saying ‘post-Covid folks, we’ve got you’.
The good thing to come from all this is the increased research into post-viral conditions like ME/CFS, and for those who have been living with such conditions for much longer getting the recognition, understanding and support they have long been without.
My health is now a difficult balancing act which is up one day and down the next. I’m learning where my limits are, and work and all the things I want to do will have to wait their turn.