Life on a timer
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. ‘I always feel less fatigued, and I sleep better on days when I go for a walk.’
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.
‘Oh ok, you’re right. I’ll go for a little walk around the block at least and take some pictures with that new macro phone lens I got for my birthday.’
‘You’ll feel better for it sweetheart,’ he calls after me.
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 drops of 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.
This flaming tree isn’t a shot of a bee or a lizard — nothing truly exciting or challenging to chase. But it’ll do.
I remove the macro lens and snatch 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. I’ve got to find something pretty that works in macro. 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.
Flowers aren’t normally photographed from that angle. This should be weird enough to be vaguely interesting. I don’t have that much material to work with if I can only get so far from my house.
I’m currently 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. 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 gigantic, deep puddles left by the floods.
He looks so much like a toddler jumping in puddles that it’s obvious why his owner is doubled over in merriment.
The light starts to go and a thin grey and black washes over the houses and the trees.
It’s boring now at twilight but if I go on a little longer, those light paths from the bridge will sparkle back into life and dance across the water, hitting the black, harshly silhouetted shapes.
There are lots of subtle shots that don’t quite work on a phone, but I can imprint them in my mind.
I’m bone tired but I’m distracted enough not to really notice now.
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: ‘Ah, you know that job you like me to do of getting oxygen to your brain? Sorry mate, I think I’ll just put a little hold on that. 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 I read 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 New York 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 pedaled, 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.
Life on a timer is like life in lockdown except the limit isn’t a 5 km, 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 & 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.
Life on a timer… like the time I went to my brother’s wedding, and I was so worried about bringing 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.
Things like embroidery are ok when lifting my arms doesn’t feel like climbing Mount Everest. (Although embroidery can be a dangerous activity when you are on a couch next to someone else with long covid and you punch the needle into their knee by accident. You have been warned!) 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. I never thought I’d see such a wholesome use for video games but there you go.
We’ve picked up a jigsaw puzzle habit as a household. 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 5 TB 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 vegging out watching Stan and Netflix. Let’s be real.
We have watched every Marvel film in timeline order. This is something that is worth doing at least once. It is much more coherent when you see the story arc. Marvel is pretty brainless, which is great. Good guys smash bad guys. The End.
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’.
(Ok, I don’t actually say that, but I probably could. My colleagues have a sense of humour about all this I think.)
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 kicking arse in the theatre world. I didn’t make as much time for them before I got long covid.
***
I resolve to go another 200 metres 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 200 meters and sit down again. Then another.
The 20-minute walk home is starting to feel like 100 km away. 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 enquire whether I’ve been run over by a bus or I am still alive.
He’s joking but I must have worried him by taking about an hour longer than I said I would. Oops.
‘Sorry, 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.
‘Oh well, you know what I mean. Thanks for rescuing me!’
