I went for an hour-long walk and my partner had to come rescue me. That’s long covid.
“Should I go for a walk?” I ponder out loud, gazing out the window at the afternoon sunshine.
“Go for a walk, you’ll feel better,” my partner says firmly.
We’ve won the jackpot as a couple; we’ve both managed to get long covid and this is now day one hundred and something post infection.
“But I’m just so tired,” I plead. He gives me a stern, but kind, look.
So, off I traipse.
I clink the metal screen door shut, open the garden gate and snap it behind me.
I briefly consider cleaning off the cobwebs and then quickly put that in the too-hard basket. I can’t waste precious energy on anything like that right now.
“Up the hill, follow the afternoon light,” I tell myself.
Sunlight grazes the tops of buildings. I turn and see light flooding through a tree on the other side of the street. Gold spills across the grass. Mild yellow and pearl clouds float above. I always forget about the sky, so wide and open and peacefully unconcerned with anything down below.
I take a picture.
I don’t know why I do this … it’s like I’m trying to demonstrate to myself that something meaningful happened that day, something spectacular that always will have happened — and no amount of exhaustion can take that away from me. I have it on record.
I keep walking, looking for more subjects. Ah! A blue wood aster against a yellow wall. How striking.
And a large red-pink hibiscus turned towards the ground with veins running up to the stem. The lines will pop in a close-up.
I don’t have that much material to work with if I can only get so far from my house.
I’m about 15 minutes from home. I don’t have the normal burning sensation in my lungs, and I don’t feel breathless or light-headed. I don’t have a headache. No freaky fatigue. The world hasn’t started spinning slowly yet.
I’m dog tired, though. I feel like a zombie on the march, but I can push a little further.
I like going down to the water at sunset. The Anzac Bridge and the city skyline lights up with paths of reflected light travelling to Jubilee Park.
If there’s fire in the sky, and the water is calm, it mirrors back all that drama and it’s twice as eye-popping. The dogs are on parade at this time of day too.
I don’t get a great sunset today, but I do get a little poodle leaping and splashing around in one of the deep puddles left by the floods.
The light starts to go and a thin grey and black washes over the houses and the trees.
There are lots of subtle shots that don’t quite work on a phone, but I can imprint them in my mind.
The scenery is enough to distract me from my tiredness.
My friend from Melbourne is bored at work and wants to text chat. Sure, I say. I’ve blown off my friends for months because I’ve just been too exhausted and sick and unable to sustain a conversation without starting to breathe quite heavily and panic a bit.
I just can’t deliver the kind of enthusiasm and sustained attention they are used to.
But I’m feeling ok now … and this is just a text chat, how hard can it be?
I’ve been out for about an hour, and completely lost track of time.
I want to go on, but my body is starting to raise complaints: “Can’t really get oxygen to your brain right now. You might want to sit down.”
So, I do. I use my puffer, which I know won’t do anything because what I have isn’t a breathing issue as far as I’m aware. I have enough oxygen in my bloodstream. I know that because I can see it with a pulse oximeter I have at home.
I just can’t get the oxygen to get where it needs to go or get it to do its job properly.
At least, that’s what a New York Times article on long covid said. (It’s the only thing I’ve been able to bring myself to read on the topic, except a few blogs about post-viral fatigue. I don’t want to know exactly how f**ked my body is or how likely it is that my partner and I will have this for many months or even years to come.)
To quote the Times piece: “Shortness of breath is a frequent symptom of long covid. But common lung tests — including chest X-rays, CT scans and functional tests — often come back normal … In one study, patients with long-lasting covid symptoms had unexpected responses to riding a bike. Despite having apparently normal hearts and lungs, their muscles were only able to extract a portion of the normal amount of oxygen from small blood vessels as they pedalled, markedly reducing their exercise capacity.”
That sounds like exactly what I’ve got. My lung scan was normal. The ECG was normal. The GP couldn’t find anything wrong with me except low B12 levels, which have now been corrected with three B12 injections.
My partner is worse. Some days he can’t leave bed because he’s so exhausted. Sometimes the act of making toast is confusing to him because of the brain fog. Sometimes just figuring out where to put his limbs so he can lie back down in bed takes an enormous amount of concentration. It would be funny if it were not so tragic.
It’s been over three months since we caught this thing. He can’t handle complex decision making, creative thinking or emotionally laden conversations most days.
At one point, in the middle of a tricky conversation we were having with my sister, my partner found himself abruptly sitting down on the floor of the kitchen and resting his head against the cupboards and apologising for being unable to continue the chat standing up.
His face was grey, and his eyes were sunken in. You could see the exhaustion written on his face. He didn’t look like that earlier. It was as if he’d aged 10 years in 10 minutes.
The length of your tether
Life on a timer is like life in lockdown except the limit isn’t a 5km, government-mandated restriction on your freedom of movement. The limit is your energy and concentration and the time before you develop such serious symptoms that you had to do something socially awkward to escape the situation.
Like the time I wrapped up an hour-long work training session with: “I’m sorry — I just can’t seem to breathe properly right now so I’m going to need to leave it there and pick this up again later. Long covid. Sorry! Bye!”
My partner had to text my colleague and excuse me from the subsequent meeting because I was still unable to get oxygen into my brain and I was starting to have a mild panic attack about that.
It passed pretty fast. Just letting my heart rate settle and resting my voice from the first meeting seemed to restore my body to normal again.
My confidence is shot, though. I need to think more carefully about how to avoid long meetings, making sure they aren’t too close together, excusing myself if they take too long. More easily said than done when you’re in a management and training role.
Is it possible to do this part of the training via text? Can I make this into an explainer video, so I don’t have to repeat myself 10 times?
With some forethought, I can sidestep some of the contexts that seem to increase my heart rate. I like talking to colleagues and friends, I want to have a good chat and share all my tips and tricks.
It feels cruel to have a body that punishes me for this.
Then there’s the time I went to my brother’s wedding, and I was so worried about bringing more covid home and making my already sick partner worse that I decided to drive to my mum’s house in Bundanoon and camp out there for a few days.
(There was a covid case at the wedding, but no one got sick fortunately.)
I thought I’d be ok to do the two-hour drive. Driving isn’t high energy, just pressing your foot down and turning the wheel.
It turns out that is not the case.
Driving is actually an extremely high-intensity and high-focus task.
I got fatigued to the point of being worried I’d fall asleep at the wheel within 20 minutes. I stopped, of course.
And I stopped every 20 minutes all the way down to Bundanoon from Sydney — and every 20 minutes on the way back. It took me about 4–5 hours each way. But at least my partner was safe. I just could not give this awful disease to him again. And I couldn’t miss the wedding.
Silver threads
Things like embroidery are ok when lifting my arms doesn’t feel like climbing Mount Everest. It’s a relaxing and satisfying craft activity for someone with low energy and a lot of time on their hands.
Beading is also quite doable so long as you have enough mental bandwidth to choose nice colour combinations. I have inflicted a beaded lamp on my partner. My sisters are next.
My partner hates crafts so he’s been watching sport, listening to idiotic comedy podcasts and playing some simple video games.
We’ve picked up a jigsaw puzzle habit. For one week, the dining room table was scattered with rabbits and cats, the next week we pieced together 60 years of spacecrafts.
More recently, a 3,000-piece Marvel comic puzzle has occupied our table for weeks. There are many hours you can melt away trying to sort different shades of grey into little piles.
At one point, I resorted to buying a 5TB hard drive and re-archiving my photo archive, which goes back to 2007. This is what boredom does to a person!
Most of these photos have never seen the light of day (nor should they). But there are a few diamonds in there that I select with great care and pop onto my Etsy photography shop. (In two years, I’ve sold four photographs, amounting to a total revenue of $20. I’m so proud!)
Some days I comfort myself with the fact that I’m working through these long term projects that I would otherwise never get time for.
But mostly, I’m just veging out watching Stan and Netflix. We have watched every Marvel film in timeline order.
Working part-time is actually way better than being a workaholic, and that’s something I’d like to be able to keep after this is all over.
There is something extremely pleasurable about ditching work at 2pm and going, “Later nerds, I’m going to watch Spiderman”.
And I’m seeing more of my sisters because they are the only people who will put up with my partially passing out at the dinner table or being unable to sustain eye contact because it is too draining. They won’t judge me for failing to say anything interesting at all for several weeks running.
My sisters are really cool. One of them is studying Ancient Greek and making jackets from quilts. The other is smashing it in the theatre world. I didn’t make as much time for them before I got long covid.
A little help
I resolve to go another 200m or so and sit down again.
Perhaps the added work of texting my friend while walking is too draining, I wonder.
I put my phone away and focus on walking.
I still can’t catch my breath. I sit down on a sandstone block. This would be a really nice spot to sit and watch the water ripple in the darkness if I didn’t need to get along home.
I told my partner it would just be a short walk. He must be wondering where I am.
I do another 200m and sit down again. Then another.
The 20-minute walk home is starting to feel like 100km. Can I make it back?
Yes, if I stop every few minutes, I’ll be ok.
I should text my partner and let him know why there is a delay.
Maybe I can get an Uber? But then I would have to talk to the driver. Urgh.
I check my phone again. My partner has texted me to politely inquire whether I’ve been run over by a bus or I am still alive.
I’ve taken about an hour longer than I said I would. Oops.
“I was trying to push myself a bit and now I need to sit down every few minutes to catch my breath,” I quickly text back.
“Do you want me to come rescue you?”
I pause.
“Aww. Yes?”
“I’m putting on my shoes.”
The car pulls up a few minutes later. I give him a hug and lean back into the seat and take a deep breath in. Still not reaching my brain but I know if I get home and lie on the couch for a bit, I’ll be ok.
“I’m getting better,” I say to my partner cheerfully as we get to the front door. “I couldn’t have gotten through that much a few weeks ago.”
“You got through it, did you?” he laughs as he pulls the door open.
Ok, so I needed rescuing from a walk … but if long covid has taught me anything it’s to be grateful for small improvements.
This was originally published at medium.com. All photos by Felicity Nelson
