TLDR: I have gotten very ill with severe Myalgic Encephalomyelitis and have been bedbound for the majority of this year so far. I will be taking a break to rest, regulate and rebuild, and will hopefully be writing again next year. All subscriptions have been cancelled by me. I don't need any help right now, but please, please, please donate to my friend, who also has ME among other things, for their urgent surgery. Here is Eli's fundraiser for their urgent surgery:
In January, I was living my best life, I was active, creative and flourishing. My projects were going well; I was getting out for walks every day. I was recovering from something that I thought was just sleep apnea and related effects, but I was getting better. I was thriving.
So I kept seeing what else I could do now that my body was giving me more, so when the opportunity to go to Laneway Festival came up, I jumped at it.
That day was the last day that anyone has seen me well.
I knew I was pushing myself, but I wanted to see what I could do now that my fatigue was clearing up – and that if I could spend the entire day out at a festival, I could definitely start going to the gym.
I paced myself, I didn't drink any alcohol or take any drugs, I used the accessibility area to watch from a seated distance. I judged myself so hard for using the accessibility area. As far as I was concerned, there was nothing wrong with me; I was getting better and more active.
But on a deeper level, I knew.
It wasn't till Chappel Roan's set that everything started going really wrong. It started with a pounding headache, and then it hit all at once – blurred vision, dizziness, muscle pain, brain fog, my heart racing.
I did not know it at the time, but my body was crashing.
I stumbled over to the concessions to ask for water, but they only had Red Bull, so, in my brain-fogged state, I decided to find water elsewhere. I made it about 20 metres before collapsing to the ground in front of some police officers.
With the police about as useless as always, it was a nearby security guard who contacted medics. They looked me over, checked my heart rate, blood pressure, and blood sugar, gave me some water and musk sticks, and said I was fine.
I thought I was fine.
Chappell Roan's set had just finished, so I stood up to find my way back to Triana, who I had come to the festival with.
I was not fine.
It was a two-kilometre walk back to the car. I had to stop to sit on the ground constantly. I was dizzy again; I was almost as bad as I was the first time. People walking by were giving me their sweets and their water. Triana was holding me upright. I felt so loved and so useless simultaneously.
The next day, I was in more pain across my body than I had ever been in my life, and I was struggling to move. Triana brought me food from Woolworths to see me through a few days. I came out to help her put it in the cupboard/fridge, but ended up falling onto a beanbag on the floor instead.
I knew what was happening; I knew it was ME/CFS. But I didn't want to say it. At the time, I was in a committed relationship with someone with ME/CFS, who had described in vivid detail the horrors of the illness, what it does to you, what it takes from you – and most horrificly, how people leave when you get sick.
Once I was able to get myself to the doctor, I was feeling okay. I just presented the symptoms as is. I didn't want to bias the doctor with my suspicion that it was ME, after all, if it's something else, I want to know and get better.
I know you don't just "get better" from ME.
The doctor suggested I rest and recover. So I did, but a few days later, It happened again.
Muscle pain, a heart rate of 152 on standing, a complete inability to think and articulate. I felt like I had simultaneously run a marathon, drunk all the alcohol in the house, gotten the worst flu and been hit by a truck.
Triana drove me to the doctor's this time, I had my eyes closed from the moment we left the house, to the moment we got back. I was sick and getting sicker. I was no longer able to hold conversations, I had essentially no working memory. I couldn't keep my eyes open, I couldn't walk properly, I couldn't process language properly.
It was like everything was just moving around me and I was along for the ride.
I was not used to being a passenger in a car, let alone a passenger in my own life.
I was diagnosed with ME/CFS on the 2nd of March, 2026.
It was awful, but I knew what I had to do. I had to rest; I had to let my body, my nervous system, and every part of me rest. And maybe, with strict rest – no phone, no computer, nothing. I'd return to my previous baseline.
I was so fucking scared.
Then that night, my partner, the one who also has ME/CFS, left. In my brain fog, I had repeated a pattern I had been working on – a compulsive need to fix things. And in that, I had spoken in a way that came across as condescending, repeatedly. With us both in our own crises, the relationship – one I treasured deeply – ended.
I had, in the two weeks of being severely affected by the illness, lost my cognition, my work, my study, my plans for the future, my ability to be independent, and my treasured relationship.
Everything that made me, Lucy, was now gone.
Any one of these things is survivable, even a handful. But together, functionally, for all intents and purposes, I had died.
I felt I had so much ripped out of me that I was no longer me.
And the grief of that, its price is energy expenditure, energy I did not have.
So in my grieving, thrashing, my condition got worse.
In severe ME/CFS, everything costs you; for every bit of exertion, a price. Not immediately, but the bill always comes due.
In all honesty, I only know what I know about what happened between February 13th and early May because I have photos, journals, and chat logs. I have the big events, I remember the hospital visits, the ambulances, losing my relationship, having my friends over, and only being able to come out of my room for half an hour to see them.
I don't know how it's winter now, and it's cold when I last remembered it being 26 degrees and sunny.
I don't really know what happened over the last 4 months at all.
I know I wasn't myself. I was so sick with ME/CFS that my brain lost its ability to form memories.
The research suggests it involves both neuroinflammation and insufficient blood flow to the brain.
I just know that someone from the council comes around every Friday to drop off some food, that I have a disability parking pass, that they took away my driver's license, that a council cleaner comes every two weeks and that I have a new shower chair, bath mat. Oh, and I have a very pretty cane.
I know that at the very worst of it, I was entirely bedridden for weeks at a time, and when I wasn't entirely bedridden, I was barely capable of holding conversations with people. I was maintaining conversations only by relying on context clues from what was said in the last 5-10 seconds.
I lost so much weight being unable to eat or prepare my own food; blood tests showed I had refeeding syndrome – a condition that only those who starve tend to get.
But now, having rested for the last four months, I can walk around the house, I can type this out, I can think more clearly, and I can spend time with friends in the living room. I'm working on my personal projects again, slowly.
I'm returning. Slowly. But I will never be the same.
So for now, for I don't know how long, this website won't be updated.
I've cancelled all the recurring subscriptions for those who supported my writing. Thank you for those that did.
I want to get back to work here. I think my last article before getting sick was the most important one I've written. It's the one I've seen quoted countless times by other trans creators. It was an article that cost me a lot emotionally to write, but is so important.
I am lucky enough to have life savings, so that when I was bedridden, unable to think, let alone work, I did not become homeless. I know I am lucky.
I don't currently need anything, as I work my way slowly onto the NDIS and other supports.
But there are thousands of people with ME/CFS who need your help, to stay alive. If anything I've ever written inspired you, please consider donating to my friend's mutual aid request below.
As for everything else,
I hope to see you on this website again next year. It's going to be a fight for our rights over the coming years here in so-called Australia, and I need to rest, regulate, to be here for it.
Lucy <3
A dear friend, Eli, is one of the most generous people I know.
Despite living with a severely energy-limiting health condition which leaves them often unable to leave bed and finding it hard to make ends meet, Eli is always looking out for others. Doing whatever they can to make sure everyone else is okay, and proactively caring for community. Now is our chance to give back.
HELP ELI – DISABLED QTPOC – ACCESS LIFE-SAVING CARE
Eli has severe ME & needs our help to fund urgent life-saving surgeries.
To avoid deterioration, sepsis & wait times, the surgeries are happening in the private system.
This means large gap fees that aren’t covered by medicare.
Please consider donating & sharing today.
Eli is too ill to work & has no family financial support. Centrelink is their only income.
Eli requires many daily medications for survival that are expensive & not on the PBS.
Eli was already struggling to afford food & meds before being told they need these surgeries.
Eli urgently needs:
$2100 for 2 x surgery & anaesthetist fees
$200 for specialist appointment
$300 for medications
$200 for food
PAYPAL (PREFERRED):
[email protected]
(via friend for safety)
BANK TRANSFER:
BSB: 112879
ACC: 430816528
NAME: ANY
REF: MUTUAL AID