On the hottest days in England’s history so far, I was holed up in a friend’s house in London. London not Liverpool — a cooler place, a wetter name — stuck being cooked at 39℃ after the trains left me stranded far away from home. The trains and my body, too. I couldn’t compete with all the people trying to escape before the weather peaked. In the past, I would have taken a packed Euston station as a dare; I would have stood on the front lines, neck arched, headphones off, not blinking once so I would see the platform number for Liverpool Lime Street before anybody else — and when it finally blinked orange onto the boards, I would have run. I would have gotten to the unreserved carriage first because I was so fast. Window, table seat, forward-facing, plugged in, headphones back on and happy. I’m too sick for a casual race now. So when I saw the train chaos, I conceded, and I decided to stay in London for a few more days until it was safe for me to finally climb out of the fire.

Those two extra days were surreal. A fast, hyperreal dream. The kind you have after you fall back asleep for a moment, waking up flushed and even more dazed than you were when you first woke up. I had never actually met the people I was staying with but lately I’ve been downloading all my Internet friends and seeing what they’re made of. These new people, who didn’t feel new, live in a beautiful flat that is one piece of a jigsaw inside an old church. A flat? A house? I couldn’t decide. I barely had a cogent thought while I was there. I could only think about what was in front of me: their flat-house was like a secret den I would have designed for myself with coloured pencils on paper as a kid, complete with sweet, clever roommates, and a living room full of books and games, with walls that had been painted bright red. When the heat climbed quickly through the 30s and I started to feel bad and strange, I imagined I was made of matches; I moved slowly through the rooms incase I struck the walls and set the whole place alight. In the fairytale, the little match girl froze to death but in my story, I thought I might melt.

When I was finally told what brand of Long Covid I have — Postural Orthostatic Tachycardia Syndrome — I read forums and patient-led websites that all listed heat as the number one aggravator of symptoms. I was dreading this summer and it has historically outdone itself. People die in heatwaves and I didn’t know if I was being dramatic for thinking I could be one of them. So, I drank nine litres of water both days and I sprinkled icy flakes of salt on my toast. I have a lower blood volume than other people so I have body-things I need to do. I guess it helped that on those days, everybody was feeling bad. In the special church house where we had sheltered from the storm, we kept the curtains closed. We lay on cold objects and tiled floors. We misted our ankles with holy water from a spray bottle in the fridge. We complained. And when we weren’t unconscious, separate, and losing the plot, we sat in the red room and played a game together called The Long Dark. My friends chose that one because the game was ice cold and it had no plot that we could lose track of.

Blue, white, rolling tundras on the screen. They thought it might cool the room down, and I think that maybe it did. The Long Dark is a game where the player has crash landed in the wilderness of Northern Canada alone. There is a survival mode that drops you there with no supplies, nothing. There are four stats that measure the player’s temperature, energy, hunger and thirst in the bottom left corner. Four white circles that start disappearing as soon as the game begins. It is a race to find what you need in caves and abandoned cabins, if you come across any. It is hard. I fell asleep in a lighthouse but I woke up unrested. I picked up sticks, made a fire, found a tin can, and used it to melt and boil ice so that I could keep myself alive. I fished on a frozen lake after I found a hook in some random drawer. I found a flare in the back of a car and when it got dark, I ran with it sizzling in front of me to find my way through a sudden blizzard and because I needed it to scare away the wolves. I died constantly.

It was such a hostile game and yet it felt like a huge relief. I normally hate losing. I love the external validation of winning a game. But even when I only survived a few in-game hours, I was ready to go again right away. It was fun. I treated my life in the game like… a life in a game. I was enjoying the simulation for the distance it put between my hot body in the hot room and the virtual one that was suffering from frostbite. It was a relief because of the setting but it was also a relief because I wished I only had four stats I needed to take care of. Every day I have to take medication to stabilise my heart; I have to be careful not too stand up too quickly, or bend over, pick things up off the floor, or stand in one place for too long because I might faint; I can’t eat a full meal in one go because I crash, but I have to eat little and often otherwise the dizziness gets painful; I have to chug water and add salt to everything so that I don’t get nauseous; and even though POTS includes exercise intolerance, if I don’t move at least a little bit, the little blood I do have pools in my legs, filling them with adrenaline. Painkillers don’t make a dent in how bad that feels. Anyway, it goes on.

It’s boring being sick. It’s boring to be stuck playing whack-a-mole with these symptoms all day every day; Sisyphus chained to an arcade machine that constantly resets. It’s boring, and it’s boring having to keep the people around me informed about the science of my body so that they can look after me when my head’s too gone to play the chronic illness game properly. In my daze, I played The Long Dark and I watched my friends play it too, and I thought about how this was a game about needing things. A sleeping bag. A bandage. A knife. I thought about the three of us and how we’d decided we needed a cold game on a hot day. I wondered if there was a survival game set in a desert that we should buy for the upcoming impossible-gas-price winter. And I dreaded next summer already, making a note to download The Long Dark when I eventually got home so that I could seek this relief once again.

The fun in this game came in when I realised that it wasn’t simply a case of looking after my temperature, energy, hunger and thirst, but that it was a deeper logistical challenge because the four stats affected one another. It is a game of spinning plates but when one slows down, it starts to wobble and knock into the others; resting will help energy and temperature but it will also leave you hungry and thirsty once you’re awake, and if you need to go hunting for food, you’re temperature is going to plummet — and so on. It is a good puzzle to wrestle with. It feels realistic even in its simplicity, and relevant to my experience of disability.

But me playing this didn’t feel like a busman’s holiday. Being sick in real life is boring because of the same logistics, the same management, the disruption, and the literal feeling of it all. My takeaway was that it’s draining having an invisible illness and communicating that experience to others — thrusting the boringness onto them, like listening to a song through a wall, hearing about somebody else’s useless dream, or spending all this energy convincing other bodies that this body is real. And I found it suddenly, blatantly, exciting and meaningful to see a character’s health visualised in stats on the screen in these terms. For the survival game I’m being forced to play, I want the same for myself. HUD to point at. Data. Temperature stat flashing red in the church, energy questionable, hunger acceptable because my friend just made paneer curry, and thirst perfect because of the 9 litres I’m putting away. That’s the science fiction future I need. Plug me in, I want to see everything I am.

I woke up, checked the weather app and the temperature was back in the 20s. I packed my bags and when I went downstairs, the curtains were finally open. I could see birds in the garden circling a bird feeder, seeing to their own needs. I could also feel myself having a revelation but I have been waiting until I was back at my desk in my own home to make sense of it, head cool enough to think in full sentences again.

I often go through my day to day as if I am playing The Long Dark. I get fixated on my temperature, my energy, hunger and thirst because with the type of sickness I have, those four stats matter most. I have never played the Sims but sometimes I watch others stream it. Sims players have to keep their characters fed and all the rest, but they also have stats for comfort, social and fun. Fun is a stat I never think about anymore because I’m too busy playing Long Covid survival mode. Social isn’t either. Maslow would understand. The Long Dark understands too — my avatar is just trying to make it through another night in the snow, she doesn’t have any capacity for fun. There are no recreational activities. No people for her to hang out with. But stuck in London, playing a hostile game in a hostile temperature and doing it in a hostile body, I realised, to my surprise, that I was having fun. I was meeting new people and doing new things, even if I felt bad, I felt good as well. I thought about how much I just commit to suffering, and to the single player mode of being ill, and that morning I decided the train station didn’t have to be more wilderness. I can turn down the difficulty mode and give myself a break.

I said goodbye to my friends. I hoped I would see them again soon. And then I got a taxi to the station instead of a bus. When I arrived, Euston was full of all the other people who had been stranded and were now climbing out of the fire. And instead of standing with them and fainting in public, or getting in a taxi to go back to my friends’ magic church house because it was so full in there, I walked straight to the Mobility Assistance desk to ask for help. I told them I needed to get on the next train to Liverpool Lime Street. The man smiled and told me to take a seat. He said that they find out the platform numbers before anybody else and that I was booked to go on a buggy when the train came in. A woman finally came to collect me, she took my heavy bags. I sat in the front seat next to her and we sped in front of all the commuters who were looking up at the boards without blinking. I told her that I hadn’t been disabled for very long and that today was my first time doing this. She smiled, said that this is what it’s there for, and when she saw my face she asked me if I was having fun.

I was the first person on the entire train. Window, table seat, forward-facing, headphones back on and happy. I was excited to leave London but I was also excited to come back.