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.
4 responses to “Are you better now?”
There are a lot of similarities between long Covid and fibromyalgia. I’ve wrestled with the latter for over 10 years. My advice is first accept what is and do not dwell on the past. As an elite athlete in my 20s and still fit before fibromyalgia I spent a long time raging against the condition which had reduced me to a shadow of myself. It’s a waste of energy. Learn how to pace and take regular exercise. It may be you only walk a mile and you have to stop but do it every day and you slowly regain some fitness. Find the times when your brain is sharpest and use them for major work and schedule routine tasks into other times. Rest and sleep when you need to. Finally eat fresh fruit and veg and try to sleep as well as you can. Both really help.
Thanks Mandy, it’s definitely a learning curve., just taking a while to understand where my limits are now. Mornings are better, so I’m getting things done first thing. A fired also suggested Micro-rests. Five minutes of no stimuli, resting with eyes closed at regular intervals. Finding those helpful too.
Hi Sara
I’ve been lucky enough to escape Covid thus far, but so many people have tragically lost out. In my case, the necessary closure of swimming pools and gyms for such long periods has been a major factor in a significant and most likely irrevocable, deterioration in my condition (Cerebral Palsy). The makeshift home gym meanwhile, can only help so much – and trying to follow a fitness video isn’t really viable. But I’m still lucky.
The consequential losses arising from this dreadful pandemic, whether in loss of lives or livelihoods, are undoubtedly profound and long-lasting. Try to take it one day at a time if you can.
I’m currently writing a broader piece on PR with a disability, having had almost two decades in communications, with limited success. I have yet to commit to a publishing platform. Feel free to get in touch to discuss if you want to. Meanwhile I wish you well. Take care.
Hi Jeremy, thank you, I’m glad you’ve not had to experience it and are staying safe. Do drop me an email about the piece you’re writing.