Niko Suvisto

@nikosuvisto

Life on hold by severe #MECFS, currently 99% bedbound 🛌 Documenting my life like it is now, advocacy through photography 📷 📍Finland

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Niko Suvisto@nikosuvisto· 5d

It’s Severe ME Awareness Week and sleep problems are one of the more significant symptoms of the illness, which in my experience are heightened in the severe stage. Insomnia always reminds me of those darkest moments. 12/12

A blurry black-and-white photograph made using intentional camera movement where subjects are various objects on top of a sideboard in a dark room. The clock radio’s lit numbers are blurry and form a string pattern. The light that peeks from the corner of a blackout curtain illuminates artworks hanging on the wall, a lava lamp, and other personal objects.

Niko Suvisto@nikosuvisto· 5d

Insomnia, one of the miserable symptoms of myalgic encephalomyelitis. It causes the time to stand still while every minute feels like an hour. A moment when you think about the what-ifs. Or when you reminisce about the past as there is not much of a future ahead. 1/12 TW: Death #SevereMEAwareness

A blurry black-and-white photograph of various objects on top of a sideboard in a dark room. The clock radio’s lit numbers are blurry. The light that peeks from the corner of a blackout curtain illuminates artworks hanging on the wall, a lava lamp, and other personal objects.

Niko Suvisto@nikosuvisto· 6d

On Sunday, I shared my most recent blog post that told the story of how I was transferred while having very severe ME. Today, I’d like to share my online exhibition, ‘In the Absence of Light’, which tells my whole story of surviving very severe ME. 1/3 #SevereMEAwarenessWeek

A black-and-white photo of a hand resting on a pillow, lit by a flash in an otherwise dark bedroom.

Niko Suvisto@nikosuvisto· 10d

It’s August now and the official Severe ME Awareness Day is the 8th of August. In past years our community has talked about how a single day for severe ME is not enough. 1/5 #SevereME #MECFS #pwME #Photography nikosuvisto.com/this-is-how-...

A black-and-white photograph of a dark bedroom where Niko is lying on his bed eyes closed while he wears earmuffs. The blinds of the window are shut, and the blackout curtain is lowered. A wheelchair is in front of the window. The room has artworks and an oval-shaped mirror hanging on the walls. A chair with personal objects is next to the bed.

Niko Suvisto@nikosuvisto· 13d

Part of my morning routine is to drink a glass of water with supplements. Yesterday, I noticed how the light glimmered in the water and reflected off the spoon. The title of this new panoramic project is ‘The Light Only Passes By’, and I chose it for several reasons. 1/3 #MECFS #Photography

A black-and-white panoramic close-up photograph of a glass of water, with supplements and a spoon in it, on top of a chair.

Niko Suvisto@nikosuvisto· Jun 29

I thought it would be impossible to find love in my life while being severely ill and disabled. Especially, as I’m trapped inside my room and am 99% bedbound with severe ME. I had given up that idea – yet, I sometimes daydreamed about meeting someone and having a relationship. 1/9 #MECFS #pwME

A black-and-white close-up photograph of hands against a dark shirt, resting on a person’s body. The thumbs and fingers form a heart shape in the middle.

Niko Suvisto@nikosuvisto· Jun 17

Yesterday was my mom’s name day, and a few relatives visited us. I stayed isolated, and my door was kept shut because too much noise makes my symptoms worse. But I did overhear a conversation about my situation. 1/10 #MECFS #pwME #Photography

A black-and-white portrait photograph of a woman in her sixties. She has a short curly hair, and wears a tiger stripe inspired shirt. She stands near a bedroom corner.

Niko Suvisto@nikosuvisto· Jun 7

They have denied all my disability pension and sickness benefit applications. The appeals are denied as well. I’m deemed fully fit for work and made to collect unemployment "benefits". 1/2 nikosuvisto.com/denied-denie... #MECFS #pwME #Photography #Kela #SocialSecurity

A black-and-white photograph of a pile of papers and envelopes on top of a folder.

Niko Suvisto@nikosuvisto· May 12

This photograph, titled ‘Suffocated’, was my submission to the A Quiet Storm’s online group exhibition ‘Myalgic Encephalomyelitis Kills’, which launched today on the International ME/CFS Awareness Day. 1/10 www.aquietstorm.me/myalgic-ence... #MECFS #Photography #OnlineExhibition

A grainy black-and-white photograph of a fist holding a white rose against a black background.

Niko Suvisto@nikosuvisto· May 10

Today is Mother’s Day, and my plan was to write a longer text in honour of my mom, who is my sole caregiver, but I don’t have the energy for that right now. I feel more ill than I usually would. This photograph was taken last week when she came to my room to celebrate Vappu. #Photography #MECFS

A contrasty black-and-white photograph of a woman in her sixties looking at and reaching her hand towards three balloons that hang from the ceiling in front of a window. She has short curly hair, wears a graduation hat, a blouse and a skirt. A shadow of her shape and the balloons are visible behind her.

Niko Suvisto@nikosuvisto· May 8

And a panoramic version.

A black-and-white panoramic photograph of a dark bedroom corner with a mirror that reflects a view of a flower bouquet on top of a sideboard. A table lamp illuminates the flowers. In the middle of the photo is a barely visible bookshelf.

Niko Suvisto@nikosuvisto· May 8

Last week my godmother brought me flowers. Image is part of my ongoing self-documentary series ‘Enduring: Life with Severe ME/CFS’.

A black-and-white photograph of a mirror in a dark room that reflects a view of a flower bouquet on top of a sideboard. A table lamp illuminates the flowers.

Niko Suvisto@nikosuvisto· Apr 26

I basically never post any photos the same day I take them. Mostly because my illness, ME, won’t allow me to do that. But this image is from today. 1/3

A black-and-white photograph of a woman in her sixties looking outside of a bedroom window. The room appears dark.

Niko Suvisto@nikosuvisto· Apr 22

All sorts of supplements are often more readily available. The pile of them grows and grows, but their effect to tackle the symptoms is at best hard to judge. 2/4

A black-and-white photo of a big pile of supplements: darker capsules and white round pills.

Niko Suvisto@nikosuvisto· Apr 22

We try to find hope wherever we can, which often means we try out all sorts of "treatments". There are some (off-label) medications to try, but nothing is guaranteed to work and the risks can be high – if you even have access to them. 1/4 #MECFS #pwME #Photography

A black-and-white macro photo of a pile of supplements. A single white round pill is the focal point of the image. It’s surrounded by darker capsules.

Niko Suvisto@nikosuvisto· Apr 15

I like writing captions for my photographs, but lately my mind has been way too clogged for it. I have managed to take a few images I’d like to share, but I also want to write texts for them as they feel like important topics. 1/5 #MECFS #pwME #Photography

A black-and-white photograph of Niko, a man sitting in a wheelchair, taking a selfie through a distant mirror. He has raised his camera to his eye level. The room is a bedroom, and it has multiple personal belongings hanging on the walls or scattered on stools and a sideboard. Artworks hang from the wall, and a tall bookshelf is in the corner of the room.

Niko Suvisto@nikosuvisto· Apr 3

My Easter meal in 2025. I ate alone in my room while others gathered in the dining room, which is right at the other end of our house. 6/6

A black-and-white photograph taken from Niko’s point of view in bed of a finished meal; empty plates on a wooden tray. In the background is Niko’s bedroom with various objects.

Niko Suvisto@nikosuvisto· Apr 3

My mother in our living room during that same Easter photography "trip" in 2024. When my illness was at its most severe I couldn’t even hold a camera. Back then I daydreamt of documenting my mother’s life. 4/6

A black-and-white photograph of Niko’s mother sitting at a table in a dining room. Niko’s own image is reflected on a dark television screen.

Niko Suvisto@nikosuvisto· Apr 3

I think it’s always worth to document whatever's in front of you. However mundane or boring it might feel in that moment there might be a time when those captures become important. 1/6 #MECFS #pwME #Photography

A black-and-white photograph of a flower bouquet. A rose is the focal point of the image.

Niko Suvisto@nikosuvisto· Mar 26

To make matters more complex, I have to travel fully supine, which means only an ambulance or a stretcher taxi can take me anywhere. Or let’s be real—my only destination would be a hospital in an emergency or if a doctor blackmails me to go. 3/7

A black and white photo of a snowy yard where a stretcher taxi has parked. The back doors of the car are open and a stretcher is taken out of it. In the distance is a garbage shelter.

Niko Suvisto@nikosuvisto· Mar 26

It’s been exactly two years today since the last time I was outside of my house. Since June 2022, I’ve been outside only a handful of times, and all have been hospital visits. Such was the case two years ago as well. 1/7 #MECFS #pwME #Photography

A black and white photo of an open side window in an otherwise dark bedroom.

Niko Suvisto@nikosuvisto· Mar 19

The only clues of the passage of time are the changing view from your window, how the light plays differently in the corners of your dark room from season to season, or when your loved ones get older.’ The full essay, including all images and captions, can be viewed on my website. 6/6

A graphic that reads:

‘Millions of people around the world have been imprisoned by ME. Just like me, their time stands still, but most of them probably can’t document the passage of time as I can. Their lives have been reduced to a mere existence. Maybe every once in a while, something reminds them that time has passed while we all wait for the rest of the world to recognise our emergency.’

Niko Suvisto@nikosuvisto· Mar 19

For two years, I have documented the passage of time through my window. The project has turned into a photo essay, and is now live on my website! A short excerpt from it below: 1/6 nikosuvisto.com/the-time-sta... #MECFS #pwME #PhotoEssay #Photography

A black and white photo of Niko, a man in his 30s, sitting upright in a medical bed, looking outside a window. He’s wearing a thick woollen turtleneck sweater. The view from the window reveals a snowy landscape. In the background are a small Christmas tree on a stool and a wheelchair.

Niko Suvisto@nikosuvisto· Mar 12

The submissions for our open call online group exhibition, Myalgic Encephalomyelitis Kills, are now open on our website! More details on the website, and the original statement is linked down below. www.aquietstorm.me/open-call-me... #MECFS #pwME #OpenCall #Art

A text: ‘Submissions now open!’

Below it a hand-written text reads ‘Myalgic Encephalomyelitis Kills’.

A text: ‘An online Group Exhibition’.

Niko Suvisto@nikosuvisto· Mar 3

If there are flowers in our house, I try to use the opportunity to photograph them. The light in my room is a big problem, and I can’t stay upright for long without my symptoms worsening. So, any close-up or macro work is usually out of the question. #MECFS #Photography #Flowers

A black and white photo of flowers in a vase on a table. The room is dark, and one table lamp lights the flowers and nearby objects like candles, a speaker, and artworks that hang on the wall.

Niko Suvisto@nikosuvisto· Mar 1

Every morning, my mother comes to my room and opens my curtains. I can’t do it myself as I’m 99% bedbound due to severe myalgic encephalomyelitis (ME/CFS). During the winter months, the rays of the morning sun reach my room from the other side of the house. #MECFS #pwME #Photography

A black and white photo of Niko’s mother about to open his bedroom’s blackout curtain. The room is still dark and a single ray of sunshine makes a stripe pattern that lights part of his mother.

Niko Suvisto@nikosuvisto· Feb 26

Our gallery currently features 8 artists and 9 different exhibitions, with new artist introductions, exhibitions, and blog posts in progress. 5/7

A text: ‘Our exhibitions’. And below it a square-shaped collage of 9 different exhibitions: collages, black and white photographs, digital drawings, and abstract works.

Niko Suvisto@nikosuvisto· Feb 26

We have finally finished updating our online art gallery into a dark theme! A Quiet Storm showcases art made by people who have experienced severe ME/CFS. Our full statement is below. www.aquietstorm.me #MECFS #pwME #Art #OnlineArtGallery

Niko Suvisto@nikosuvisto· Feb 25

For some reason, I haven’t photographed the door of my room. Maybe it is because I’m always faced the other way around. 1/5 #Photography #MECFS #pwME

A black and white photo of a dark room. The room’s door is partially open and shows a view of a bright hallway. The light from the hallway lits part of the floor.

Niko Suvisto@nikosuvisto· Feb 22

The lifts in the video are from 2015 to 2018. To you, it might look like an average exercise montage. Maybe you think to yourself, ‘He moves well.’ 5/11