1News Reporter Joy Reid, who has been battling Long Covid throughout 2023, describes the difficult journey back to health and the strain it puts on her family.
“Mum, I’ve told Santa that I don’t want any presents this year if he can make you better.”
That was the moment I broke. My seven-year-old daughter asking Santa to heal me made me realise how much Long Covid isn’t just affecting me, it’s impacting the entire family.
Two years ago, I was a fit, active, bubbly and social. An energetic journalist, mother of three, wife and CEO of a small charity. I would pride myself on my career, the juggle and how much I could fit into a day, often on little sleep (thanks to my night-waking toddler).
Now, I’m mostly housebound. I nap each day, I can’t work, I can’t easily socialise or look after my children for long periods or carry out household chores. Even washing my hair can be a challenge at times.
I can’t handle loud environments, I struggle to walk more than a few hundred metres at a time and I have purchased a wheelchair to get around on my bad days. My heart is doing funny things, I have regular headaches and my sensory and autonomic nervous system functions are out of whack. The list goes on.
Long Covid is an emerging area of health, or in layman’s terms, not much is known about it. Experts predict anywhere from 2 to 20 per cent of people who get Covid-19 will get Long Covid in varying degrees.
In the US they call Long Covid sufferers the “missing millions”. And I know why, because it makes you disappear from the world as you knew it.
I’m 18 months post-infection, and nine months since my symptoms escalated. While Covid seems ‘sooooo last year’ for most of the population, for some of us, it’s our daily reality.
With no obvious cure, it can feel like a very long and lonely journey at times.
The thing is, Long Covid also has a dramatic effect on everyone in the sufferer’s support network. They are the ones picking up the slack and are also missing out.
“It’s so unfair you have Long Covid,” the kids say as I again explain why I can’t watch their sport or take them to the movies or go for a bushwalk. Long Covid has redefined much of our 2023.
My brain and body don’t function like they used to. On my bad days, the brain feels like it’s filled with sludge and I am dragging weights off every limb. It’s a constant battle with wanting to do things but the body not being willing to participate.
I’m writing this piece over several better days (with breaks) in the hope it might help someone else understand and give a voice to those still suffering with this virus. That’s where I get my hope from, reading the stories of others with it and knowing I’m not alone.
Unhelpful comments
I mostly look normal from the outside, except on the days when my complexion is a bit grey. But people who know aren’t sure how to talk to me.
There are those who mean well and say, “Oh, you’re looking so much better,” not realising that the only reason they’re seeing me is because I’ve rested for days beforehand and will have to again when I’m home.
Then there are the vocal sceptics, who share their unhelpful doubts. “It’s in your head,” they say. “It’s due to your Covid vaccination,” or they simply laugh and ask if Long Covid is actually a thing. I can assure you, it’s a thing!
I call it my Life Interruption as my life looks utterly different now. I’ve struggled with accepting this new me, with the loss of self. Who am I if I’m not able to be journalist - a career I’ve spent nearly 20 years in? Or who am I, if I’m not the mother on the sports field side-lines or at school assemblies (yes, I was always the loud one)?
I am still someone. Someone who hasn’t disappeared, even if that’s very much what it feels like. Someone who hasn’t given up hope.
I’m working with the GP, nutritionist, respiratory physio, sports massage therapist, occupational therapist, health coach and counsellor. I’ve tried hyperbaric oxygen therapy, lymphatic massage, medication and I'm on daily supplements.
I’m trying. But I’ve learned that not one single thing or person is a magician, as much as I’d like them to be. It gives me hope to be trying something though.
The research from overseas suggests people do recover to a point where they can partake in life again, it’s just not always the life they once had.
At the moment I feel like I’m living a gigantic equation, constantly working out if today is a good or bad day, how much energy I have and what to spend it on and what to sacrifice. I feel like I’m always trying, not able to be carefree or to let my hair down for fear of the consequences.
Community of Long Covid sufferers
I’ve found solace with other Long Covid sufferers. And I’ve come to realise, while I can’t control my pace of recovery, I can control my attitude (or at least I try to control it).
I don’t want to get caught up in things I can no longer do, and continuously grieve for what my life used to be so I’ve learned to mostly accept this new life. In fact I’m finding plenty of moments of joy in it - my morning cup of tea, reading books on the couch with my toddler, knitting (a new hobby) and I love my daily naps as they give me a second chance at the day.
But it’s not always easy. This time of year seems tougher - missing Christmas parties, not being able to watch my daughter dance in the Santa Parade and then seeing the kids’ Christmas wish lists saying “for Mum to get better”. If only it were that easy.
It’s been an extraordinarily humbling experience. I’ve had to learn to accept help - not something I’ve traditionally been good at as I was always the “helper”.
I’m adapting to the new normal and I take great pride in celebrating the wins, especially the brain function that’s returning. I’ll take brain health over physical health any day, although I hope I don’t have to choose and that the improved brain health precedes the physical recovery. Fingers crossed.
But it’s not my journey alone. It’s important to acknowledge the toll this journey is taking on those around me. My kids make no secret of how frustrating this is for them, but it has also fallen on my colleagues, extended family, neighbours, friends, and of course my very patient husband to help survive this season. However long it lasts.
It’s impacting on all of them a lot too.
I owe them so much and I’m so very grateful to them. It’s in these moments that you realise how lucky you are to be surrounded by so much love.
I don’t know what the end of this story looks like or when it will come, but I know it’d be easy to get lost in the pages. For me, the key to making it to the end will be in finding joy in the little things, and laughing as often as I can. Because having people to walk this journey with is more than enough reason to smile.
Every day my 10-year-old asks, “How would you rate today, Mum? Out of 10, with 10 being the best, and one being you’re almost dead?”
These past days I’d say a solid five. But we all know it might not last, so I’ll make the most of the fives in case tomorrow is a two. Deep down, I’m hoping for a Christmas miracle and it’s closer to 10.
LONG COVID: HELP AND ADVICE
Ministry of Health: Symptoms and management of Long Covid
Long Covid Online Support Tool
SHARE ME