Hello friends,
As you may be aware, I’m currently living with chronic fatigue, which is why my posts are always so horrendously late. I like to think of chronic fatigue as a monster I’m co-habiting with against my will, because I have a compulsive need to externalise every challenge I face as if its part of a fantasy story. It’s perhaps a rather childish coping mechanism but if it ain’t broke I ain’t going to risk trying to fix it. Since it’s been part of my life for the past fifteen months (and counting) I want to have a go at putting into words exactly what it’s like (in my own, particular experience) to have chronic fatigue as a housemate.
It turns out I have a LOT of thoughts, so there will be a Part Two to this. For now, this is just the story of how I found myself in the middle of my own personal zombie apocalypse and what is was like to face the end of my world as I’d known it…
Part One: Welcome to the Apocalypse
Somehow, I managed to avoid COVID-19 for two years, despite working as a teacher and coming into close contact with The Infected on numerous occasions. This was a huge achievement for me: usually I’m the first casualty when a virus is doing the rounds. I don’t have a particularly robust immune system, and yet people considerably healthier than me were dropping with COVID like flies and there was I, untouched and seemingly invincible, having the healthiest two years of my life.
This is great, I thought, if a zombie apocalypse strikes, I’ve got a good chance of surviving. I got vaccinated—two shots and a booster—had zero adverse reactions, carried on as usual, and then the last of the restrictions were lifted and in June 2022 COVID finally caught up with me.
COVID generally wasn’t that terrible: I’ve had worse flu symptoms. I got a mildly sore throat, lost my voice for forty-eight hours, had a small, quite frankly pathetic, dry cough for a few days and that was it… or it would have been if I wasn’t also simultaneously hit by fatigue like a ten tonne truck.
Turns out, should a zombie virus ever strike, my survival rate is actually rather on the low side. In fact I’ll probably be the first in the horde of the brainless undead, slow-walking through the ruins of human civilisation one freshly munched brain at a time—if I can actually even get out of bed, of course. Because a brainless, undead zombie is exactly how chronic fatigue makes you feel: a zombie that’s too tired to terrorize the neighbourhood, too tired to get out of bed to feed, too tired to even sit up, too tired to do anything but sleep for eighteen hours straight, eventually crawl out of bed to use the bathroom and then bury back under the covers again to spend another eighteen hours recovering from such strenuous activity.
I have never been so tired in all my life. And I’ve been tired. I’m well acquainted with tired. I spent about seven years straight being tired. I was a full time teacher—utter exhaustion and chronic insomnia comes with the job. I got up early, worked until late for six and a half days a week, slept badly for barely five hours a night, often less than that, and never stopped to catch up on missed sleep, even in the holidays, because I was too busy, too driven and too stressed to rest and relax. But no matter how exhausted I was, I was still able to get up out of bed to feed and water myself before 9 a.m. and make something of my day. Even when I was sick with a raging fever induced by acute septic tonsillitis I could sit up to drink a glass of water, get up to go to the bathroom, email cover into work and hold coherent conversations with other human beings.
Fatigue is a whole other creature. It’s the bigger, far more aggressive monster older brother of tired. And its stubborn as hell. Tiredness can be appeased with a goodnight’s sleep or a long weekend break, or by quitting your murderously overdemanding job and spending your savings on taking a year off to rescue the remnants of your health and sanity. Fatigue, on the other hand, will not be so easily subdued. Once it has you in its tentacles, the monster does not want to let you go. And the worse thing about it is that it’s such a nebulous, twisting, chaotic thing that it’s extremely hard to pin down so you can identify exactly what form it’s taken and how to destroy it.
When the fatigue was at its worse, I spent the best part of three days straight sleeping. Like, actually dead-to-the-world asleep. I’d wake up for a bit, tell myself I should really sit up and drink the glass of water that was right there within arm’s reach on the bedside table, and then fall asleep again for another three hours. And then I’d wake up again and spend half an hour trying to galvanise my body into getting up to use the bathroom, fail, and then fall asleep again. And on the fourth day? I’d get up at about three in the afternoon, eat something I could stick in the microwave, drink a cup of tea and then, after a couple of hours of lying mindlessly on the sofa, crawl back to bed again. It would take about three days to recover enough from a really bad episode and get myself to a place where I could get out of bed to eat breakfast before midday. Even then I’d sleep for the rest of the afternoon before eating a stick-it-in-the-oven-and-never-mind-about-the-nutritional-value meal and sliding back into bed before the last mouthful had even hit my stomach. And then, after a handful of days not doing the whole Sleeping Beauty act, my energy levels would tank and I’d repeat the cycle all over again.
And the entire time, I kept thinking: why am I still tired? I’ve had more sleep than anyone could possibly need but I wake up feeling like I’ve pulled a week of all-nighters. Is this just in my head? Is it depression and I just don’t know I’m depressed? Is it laziness? Have I just become such a pathetic slob that I can’t handle adulting anymore and so I’ve subconsciously concocted a sickness as an excuse to opt out of life?
I ended up I crying down the phone to a doctor, barely able to articulate anything but ‘I’m just so tired’ and she assured me that none of this was normal for a woman in her thirties and we needed to investigate what was going on. I’ve never been so relieved to receive a post blood test phone call telling me that yes, they had found a problem. A few problems actually.
Number one: I was anaemic—not tragically anaemic, as my doctor literally put it—but enough to require iron tablets.
Number two: I had extremely high levels of glucose, bordering on a pre-diabetic diagnosis.
Number three: My inflammation indicators were insanely high, roughly three times what they would normally be after a viral infection.
This was proof enough that I’d had a nasty virus and my body was still very much fighting it. The inflammation was most likely causing the high glucose and the anaemia was amplifying everything. Just one of those things would have been enough to cause fatigue, so I was experiencing a triple whammy.
Lucky me.
And I don’t mean that entirely sarcastically. Not everyone who suffers from chronic fatigue gets such clear test results. Many never uncover a clear medical diagnosis that tells them ‘this is exactly what’s going on in your body and why you’re suffering this way’. I at least had some medical data to reassure myself it wasn’t all in my head—not that it stopped me from feeling pathetic and guilty and frustrated that I couldn’t just get better already.
It’s a weird place to find yourself in. You know you’re sick: your body won’t function the way you want it to; your brain can’t think in a straight line so there’s no hope in mind overcoming matter. The most basic of everyday tasks, like eating, cleaning your teeth and showering loom like the labours of Hercules, too exhausting to even contemplate let alone accomplish. Everything is telling you that something is wrong, and yet doubt nags at you, like you can’t quite trust all the signs. Surely, I’ll wake up tomorrow and things will be back to normal? Surely, I can at least manage to wash and dry my hair without needing to take the rest of the day off afterwards? Surely, I’ll see some improvement soon? And yet the gap between what you used to be able to achieve in twenty-four hours and the present, very real struggle to just get out of bed already remains a yawning, unbridgeable chasm.
The repeated mantra in my head for at least the first seven months of fatigue was: WHAT IS WRONG WITH ME? Even though I knew what was wrong with me. I was on iron tablets and having regular blood tests to check my iron, glucose and inflammation indicator levels. The doctor kept signing me off and occupational health assured me I was definitely not fit to work if I couldn’t even complete normal daily tasks. My body and brain were flashing neon signs declaring ‘Everything is Not Okay’. I even got COVID again, just five months after the first time, because my immune system was shot to pieces. I was sick. I had chronic fatigue. And yet, for some reason, I couldn’t really accept it, because fatigue felt like something I should be able to fix… with just enough rest, just enough will power, just a little more time.
And yet, fifteen months later, here I am, still living with the dear, darling, damn thing. It’s nowhere near as bad as it was but it’s also keeping me well away from my previous level of good health. And I have no idea how long it will take to fully recover. I could be completely better by Christmas. Or sometime next year. Or in another fifteen months. Or even longer.
The weird thing with fatigue is that you don’t really understand just how sick you are until you start to get better. You’re so tired you can barely comprehend your own condition. I would often get asked ‘How are you feeling?’ and I really didn’t know how to answer that except with ‘I’m tired’, which is the same as describing starvation as feeling a little peckish. The only answer I could have genuinely given was ‘there’s a lead cloud behind my eyes, and its sitting directly on the SLEEP MODE button’—but I didn’t say that because I didn’t want to sound like an idiot. And I already felt enough of an idiot, because I could barely follow the instructions for a microwaveable meal without doing extreme mental gymnastics first.
This was apparently brain fog, which I was too gormlessly lost in to identify until it started to lift. I remember clearly the moment my brain started to come back online: I bumped into a neighbour outside our flats and he asked me how I was doing. Instead of my brain throwing up the loading icon whilst it scrambled to understand the question, find the answer and looked up How To Do Words, my communication system suddenly woke up, all flashing lights and beep-beep-bop noises, and a lucid response left my mouth without me stuttering or jumbling up the words or petering out mid-sentence because I’d forgotten what I was trying to say.
I was so excited I immediately rang my mum to tell her: Mum, I had a conversation with another human being and it didn’t feel like trying to pass my Spanish GCSE orals all over again!
That was the first time I was able to think clearly enough to articulate my condition: my brain has been offline. That’s why things have been so hard. Duh.
With the beauty of hindsight, I can now see how severe the fatigue was and what it was doing to my brain and my body. And that means I can see exactly what it’s still doing as it clings on for dear life, hugging my ankles like a toddler in a tantrum whenever I attempt to leave it behind. With that insight comes the power to wrestle back possession of the trousers in this parasitic relationship, and keep my little monster boxed in as much as I can until it decides to give up and leave. Before that moment, I was trying to fight off the fatigue, even though I clearly didn’t have the energy to do that and was losing the battle every time. In the end, I came to the realisation that fighting the fatigue is futile: eventually, it WILL leave of its own accord and I just have to wait this whole debacle out. I am essentially in a cold war with the little beast and my energy is best put towards living as well as I can with what I can manage on a day-by-day basis. If that means just getting out of bed and eating three meals before 7 p.m. then that’s enough.
Since I adopted that approach at the beginning of the year, I’ve managed to complete a phased return to work and I’m currently three weeks into working my usual three full days. So far, so good. The fatigue is still very much alive and kicking, just not as hard or as frequently as it used to. Poor thing is getting tired, I reckon—ah, the irony; and I feel confident that eventually I’m going to come out the victor in this long game of attrition, because, despite the absolute horrors of the past fifteen months, I’ve learnt a LOT of stuff that has, in some weird way, also made these months some of the best in my life too.
So that’s going to be the focus of my next post: the good, the bad and the ugly lessons of Zombie Life.
On a final note for this post, one of the downsides to living with chronic fatigue is how isolating it can be; even with the best will in the world, know one is going to understand what you’re dealing with unless they’ve experienced it themselves or lived with someone who has suffered the same symptoms—and even then every case of CF is different. If you are suffering from CF or any other chronic illness, or if you know someone who is and you want to be able to support them better, come and have a chat in the comment section or let me know if you’d like me to start a thread on the topic.
You don’t have to figure it out on your own.
Questions:
Top tips for managing chronic or long-term illness?
Favourite analogies for describing health problems? For me, brain fog is definitely comparative to losing the WiFi connection… it similarly feels like the end of the world.
Until next time, friends. Take care!
PJ