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One of the main and most prolific symptoms for me, is chronic fatigue, or myalgic encephalomyelitis (ME/CFS). I’ve always – ever since I first heard “chronic fatigue” that it was an incredibly stupid name. To most people, fatigue means you’re tired and chronic means something that continues over a long period of time. In short, when you say “chronic fatigue” to most people, they just assume you’re talking about being tired often.

The amount of times people have suggested I get more sleep, have some more caffeine or just push through is high – and while I know they mean well, these aren’t things that will ever help chronic fatigue (and trust me, I know because I’ve tried them).

My life these days consists of mainly sitting in a recliner chair, on my laptop. And it’s very simply because anything else causes something called PEM (Post-Exertional Malaise). While sitting here on my recliner, my body feels tired. This is just the default feeling now. The best way I can describe this, is after a long week at work that’s been quite busy. You’re tired, your body is tired and it needs to rest.

If I push through this though – let’s say, I need to go to work, clean the house, help someone out, whatever, is where we introduce PEM. Now this gets even more complicated to explain – because you simply don’t know what it’s like until you’ve felt it.

Going on a bit of a tangent here, but the only way I can try to describe it in “normal” terms is with a story. Many years ago (and long before COVID), a friend and I signed up for the Cancer Society Relay for Life. We didn’t really have a team, so we joined the team of an acquaintance. It turned out this team was their whole family, so it was real awkward for my friend and I, and we simply decided that we’d just stay on the track the whole relay.

Anyone who’s ever done Relay for Life will know, it’s 12+ hours long, and it’s generally held somewhere like a sports track. So for 12 hours, we walked. We didn’t stop at any point, we just walked and walked for 12 hours until the relay was over. I’ve never, by any means been an athlete or trained like one, so you can imagine what my body was doing at the end of this. I had been awake for more than 24 hours, I had done 12 hours of walking, punctuated by junk food and considerably too much caffeine. By the time I got home, my body was aching all over, I didn’t feel very well and felt like I could sleep for a week. I could only lie in one position for my body to feel like it was resting. This is a lot what PEM feels like, but can be triggered by the most mild of things, like a 15 minute drive or even making a meal.

Unfortunately, PEM doesn’t stop there. It often comes with migraines, severe nausea and all sorts of associated enjoyable symptoms, like excessive sweating and fever. And then once you come out of PEM – which could be anywhere from a day to a month, you’re just run down, and feel like you have the flu.

This is now my default. My body is always tired and doing literally anything can make me 10x worse.

Is this chronic? Yes. Is it fatigue? Obviously. But is Chronic Fatigue the way we should describe this? Absolutely not.

In the weeks and then months following the initial COVID infection, my phone camera roll slows. It goes from beaches, outside and friends to the living room, bedroom and small snippets of work.

I visited my GP about a month after getting COVID. He told me what I expected to hear. That it would get better. That people were getting COVID and it was taking them a couple of months to go back to normal, but it would happen. And of course. I believed this – why wouldn’t I right?

From there, I was stuck. From someone who was constantly moving, I was now barely surviving on the couch, trying to do as much work as I could from my laptop in the limited hours I could stay awake for. I had severe nausea and fatigue. I was waking up at 10am, and was back in bed by 3pm.

I kept trying to push through. I’d tell myself I was getting better, and try do something. I’d end up in hospital, or an urgent care of some sort – and then, back home in bed.

One day in September, over the course of a day, my vision just got worse and worse. I got floaters in my eyes – and the TV that was clear that morning was now blurry. Once I could work up enough strength for my partner to drive me to an optometrist, they told me I needed glasses. I went from 20/20 vision to full time glasses over the course of a day.

The end of the year just shows nothing but the same. My camera roll consists of pictures of food (in the lounge room), pictures of outside (from the lounge room) and then the occasional picture of the hospital, urgent care or my partner.

Throughout this time, my days all looked the same. Eat Uber Eats – usually Hawaiian pizza, which I had the weirdest craving for ever since I got sick, take about 30 suggested supplements and then sleep on the couch, watch Netflix or do a bit of work on my laptop. Every single day was the same. Wake up at 10am, back in bed by 3pm. Over and over again. Severe nausea, severe exhaustion.

I’m sure, if you’re reading this and you’ve got long COVID, you’re waiting for the good news. The recovery news – or at least the “something got better” news. And sorry, that’s not coming in this post, but you’ll see why if I get around to publishing more.

I want to give a special mention to my GP at the time, Steve Hall. I learnt recently that he had passed away in 2024. Steve was one of the best GP’s I’d ever encountered and an all around great person. And it was terrible to hear he was gone.

I’d like to give a not so special shout out to Browns Bay Family Doctors who made very little effort to notify his patients, and apart from a small message after his passing, managed to get rid of any mention of him very, very quickly.

Before I ramble on too much, maybe I should tell you a bit about me. In 2022, I was a 28 year old guy, who was very go-go-go. I’ve owned my own businesses since 17 years old and would constantly do 60-70 hour weeks at work. If something needed to be done, it would get done. Sleep? Nah, there’s caffeine for that.

I guess what I’m trying to say, is that I was determined and I didn’t like slow. Work was one thing. I loved it. The constant high pressure, constantly moving, constantly travelling and doing different things was amazing. Before my mid-20s, I’d travelled extensively for work – often visiting Asia yearly, and Australia every second month. If I wanted to do something, it was then and there. When I decided to lose weight, I wanted to do it now, so it was 20,000 steps a day – and I’d do them, even if it meant walking until midnight.

So I guess it’s no surprise that the week after COVID, I was right back into it. I can’t say I went straight back into walking 20,000 steps or working 70 hour weeks, because I was still feeling lower than what I’d usually felt – but there were late nights, long walks and plenty of caffeine.

I can intently tell you that I remember this week. My partner had just started a new business so I was between that and my own work. I remember just feeling quite drained that week. Fueled by sugar, caffeine and adrenaline, I pushed through right – I mean, what’s the worst thing that could happen? I remember walking up the hill from home and just feeling waves of tiredness that I’d never really felt before. I made a mental note to have some proper rest. There had been a lot on, and maybe a day on the couch over the weekend wouldn’t hurt.

October 2022, was when I purchased longcovid.nz. I can tell you exactly what life was like back then, because it consisted of the couch, and my bed. I purchased the domain – in hopes that I would write about my miraculous recovery story.

See, at this stage, I was 3 months in. I know the exact date I caught COVID, and I could probably narrow it down to a 2-hour long period. It was Monday the 23rd of May sometime between 7pm and 9pm. Here in New Zealand, you still wore masks in Ubers and people were staying home when they were sick – or that was the theory.

We’d been out of the lockdown/restriction period for some time. New Zealand was under what was the “Orange” level of the somewhat new traffic light system. But realistically, life – as we knew it was getting back to normal.

On the 23rd of May, myself, my partner and a couple of friends were heading to the “Spring Fling” at Auckland Museum. Effectively speed dating for people who like cool things like the museum. And that’s where it happened. First time I’d been around people without a mask since New Zealand had “beat COVID” in 2020, and little did I know it, but also one of the last places I’d go as a normal person.

It took me down first. Early morning May 27th, I was running a high fever and a sore throat, and the two lines on the RAT were practically instant. I’m not going to lie, the day was rough, but I have had head colds that are worse. My partner started feeling it that night, and that evening, she was just as bad as I was.

I’m not going to lie, it was a pretty fun week. We sat at home, eating Uber Eats, drinking Dunkin Iced Coffee and watching TV. My camera reel contains nothing but food and pictures of my partner pulling funny faces. We definitely weren’t on our deathbeds and we were just waiting for the isolation period to end.