In June 2022, my illness, myalgic encephalomyelitis, progressed from moderate to very severe overnight. That meant I became bedbound and unable to care for myself. At the beginning of July 2022, I was transferred from Turku, a city where I had lived for over 8 years and had tried to build a life, back to my childhood home in Lahti. The reason I had to move was that my mother was the only person able to carry the huge burden and care for me.
A view of Aurajoki, Turku, taken by me in the summer of 2021.
I had to travel lying down in the trunk of my friend’s car because a private ambulance was so expensive, and there wasn’t any way our society would have helped with the transfer. That journey started when my then partner partially carried me on her back from our bedroom to the elevator, a distance that felt like a million miles. A stool waited for me there because there was no way I could’ve remained standing the entire time it took for the elevator to get to the ground floor from the seventh, where we lived. Even sitting up for a few seconds triggered post-exertional malaise (PEM). My friend had moved his car as close to the building’s front door as possible. There was a communication problem between us, and we waited a few seconds too long in the elevator. I’m not kidding when I say that every second counted. Every second being upright for too long might have triggered a permanent decline to an even more severe state – the stakes were high. I remember how another resident was ready to hop on the elevator, but I never knew who, because I had to keep my eyes closed under the heavy symptom load. They must have been astonished by the sight of a withered man wearing sunglasses, an eye mask on their forehead, earmuffs on, and sitting on a stool in an elevator of all places.
This is the kind of state I was in when I was transferred – very severe ME.
For the whole trip, I wore the eye mask and earmuffs as I was so severely sensory sensitive; since ending up very severe, my body had so little energy left that even processing sight and hearing became a trigger of PEM. My friend moved the car from the front door to the parking space next to the building. We had to wait until I stabilised after the transfer from our apartment to the car. In that moment, I said goodbye to my then partner. I don’t have any perception of the time we spent there waiting; all I knew was no amount of time would be enough. While we waited, I said goodbye to my home of over 8 years. I thought about the apartment we lived in, a place built in the sixties or seventies with a wooden floor that I loved – but I couldn’t even take one final look at it as I couldn’t keep my eyes open at all due to the serious symptoms. I thought about the city and how it was built around the winding river of Aurajoki. When I was out of that front door and in the trunk of the car, I knew I would never be back.
A view of the apartment's kitchen, a place where I loved to cook.
Sometimes I still miss all the plants, they were left behind.
I will always remember how it felt when the car’s engine finally started; I never could have imagined the pain and agony the vibrating car would inflict on me. When sounds become piercing knives, you realise how even a low sound can impose such pain. The earmuffs couldn’t dampen the roaring engine. The mattress below me couldn’t block out the vibrations of the car. I felt tortured and fearful of my faith. The symptoms and the immediate PEM were so severe I thought I could die during the transfer from the shock to my system. It’s impossible to fully describe it all.
Then we began to move. I have a great sense of direction, and even in the blur of the moment I was able to feel where we were. I felt and knew the turns. I was still able to imagine the places we went by. It was maybe after two kilometres, right before the motorway, when it truly hit me. I felt so so ill. But there was no turning back anymore. The damage had already happened. Now my faith was in the hands of ME and how much brutal overexertion my body could withstand. Every now and then my friend asked if I was ok, and I whispered back yes.
I did survive the trip. After 3 hours, we arrived in Lahti, but there was one big obstacle left; we had multiple stairs outside of our home, and I would need to climb them. I have always felt that PEM is something that tries to stop you from doing further damage to yourself, but my experience is that you can push through so much. Of course, some people with severe ME become momentarily paralysed, but I never did. It’s a hell of a thing what a fully adrenalised body can do. Before that trip I was in a state where I couldn’t walk to the bathroom unassisted: my legs didn’t carry me anymore, and I experienced horrible muscle spasms from trying.
Our house and the stairs I had to climb.
My friend helped me get up from the trunk of the car, and he assisted me when we began the journey to climb the stairs. I wore sunglasses and kept my eyes on the steps with my blurry vision while my other hand leaned onto the wooden rail and the other onto my friend. At the same time, every step felt like an eternity and a blink of an eye. My friend partially carried me, but the old concrete stairs were narrow, so he got left behind a bit. It felt weird how much my legs were able to carry me in that moment, which just shows how much the adrenaline helps. I had to make it inside before I would collapse for good – I haven’t walked since.
It was a warm and bright summer day, but there it was waiting and greeting me: the dark bedroom where I would lie 24/7 since then. I had instructed my mother to prepare the room: all the blinds and the blackout curtain shut as I couldn’t bear any light, a table or a chair next to the bed for water and such, and a fan to cool me down as it was hot. It wasn’t a coincidence I ended up in this exact room. It’s the closest one from our front door, and it has the shortest distance to our toilet. My own room, the one I haven’t seen in years, is downstairs in our house. My current bedroom used to belong to my parents, but since my father died, my mother moved to the next one.
I have only left this room for a handful of medical appointments during these past four years. The last time was in March 2024. These four walls have become my prison, but also a place where I have built my life again. It has been hard to mentally adjust to this, but it’s been even harder to deal with the trauma of what I had to go through in 2022. The only reason things turned for the better, and still are that way, was and is an experimental treatment called LDA. I long to be outside again, but for now the only thing left is a fading memory of what used to be.
And that’s how I ended up where I am today.
