I’m Niko Suvisto, a Finnish photographer, and I’m 99% bedbound due to severe myalgic encephalomyelitis (ME/CFS). I’ve had ME for over a decade, and since 2022 I’ve spent my days confined to my bed 24/7. 1/4

#Photography #MECFS #pwME #SelfDocumentary

A black and white photograph of a dark bedroom floor. The light peeks through under the closed door, lits part of a wheelchair and a cable running across the floor.

Every morning, I wait in the darkness for my mother to open my room’s door so that we can start the daily routines.

#MECFS #SevereME #pwME #Photography #SelfDocumentary

A black and white photograph of a shirtless man sitting on a bed, curled up with his arms wrapped around his knees and his head down. The room has white cabinets in the background, and the setting conveys a sense of isolation.

It has been one year since I started sharing more openly about my life with severe ME/CFS. I chose to do it through my photography, resulting in my ongoing series ‘Enduring: Life with Severe ME/CFS’. 1/10

#MECFS #pwME #Photography #SelfDocumentary

A black and white high contrast photograph showing a ray of light against the ceiling of a dark bedroom.

A high contrast black and white photo of a painting on a wall. The painting is a landscape of a house. A window casts abstractly shaped shadows over the wall.

A high contrast black and white photograph of a wall lamp without its shade. The light bulb lights the otherwise dark surroundings.

A black and white photo of a dimly lit bedroom. Niko, a man with a jumper and sweatpants, lies on the bed. He has ear protectors on and his eyes are closed. A chair beside the bed holds medical equipment, personal items. The door to the room is open and illuminates light from a hallway.

I hope that one day there will be more light than dark, for all of us.

All photographs part of my series ‘Enduring: Life with Severe ME/CFS’. 2/2

#Photography #MECFS #pwME #SelfDocumentary

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

I’ve not been doing that great this summer. In all honesty, these past years have been extremely hard, and my body has given up on me. In the end, I’m just grateful I’m still here to experience life. 1/8

#MECFS #pwME #Photography #SelfDocumentary

A black and white photograph in a point of view of a person laying in bed, while an older woman is hovering over and washing the person’s extended arm with a cloth while she holds the person’s arm with her other arm.

POV: You are bedbound and need a wash.

I haven’t had a shower yet this year, which feels a bit surreal, if I’m being honest. I could do it, but it just isn’t worth suffering so much, as it would trigger a huge PEM (post-exertional malaise). 1/2

#MECFS #Photography #SelfDocumentary

A black and white photo of Niko, a man with a dark beard, lying in bed. In the foreground a pillow is shown. Middle ground is Niko with his head on a pillow, looking at the camera, having his hand on his cheast. Background shows white cabinet doors and two basketball jerseys hanging on them.

I’ve not posted here for a while now. I’ve not felt good this summer, and I still don’t. Opportunities for self-portraits or meaningful photos have been mostly absent.

Although I did took this one earlier, and wrote some words.

#MECFS #pwME #Photography #SelfDocumentary #Enduring

I haven’t seen most of the rooms in our house for years now, although I live inside one 24/7. They might as well be on the other side of the world.

I’m imprisoned by my own body.

Part of my series ‘Enduring: Life with Severe ME/CFS’. 2/2

#MECFS #pwME #Photography #SelfDocumentary

A black and white photograph showing a view in a small bathroom. Daylight coming through the small window, belongings on a shelf, a large pipe in the middle of the photo, a mirror cabinet showing a reflection of the room and a small picture of a kitten hanging on the opposite wall.

A rare photograph outside of my room.

Part of my series ‘Enduring: Life with Severe ME/CFS’.

#Photography #SelfDocumentary #MECFS

A black and white top down photo of Niko, a man with a dark beard and a dark sweatshirt, he is laying on his bed, having a white sign on his chest, which says ‘ME/CFS is… the absence of life’ written in dark letters.

It’s ME/CFS Awareness Month, and I wonder — what is life?
According to Wikipedia, life consists of these seven traits ⬇️

1/10
@openmedf.bsky.social @lowenergylounge.bsky.social
#Photography
#SelfDocumentary
#MECFS
#MECFSis
#pwME

A black and white photo of a man, Niko, with a dark beard, eyes closed and wearing hearing protection, resting his head on a pillow in bed. Only half of his face is shown inside the frame.

Lately, I’ve started using hearing protection again while resting—it helps me reach a deeper state of rest. 1/9

#MECFS #pwME #Photography #SelfDocumentary

A black and white photo of a man, Niko with a buzz cut and a dark beard, resting in bed, his head on a white pillow, with his eyes closed, wearing a grey sweatshirt.

In need of some rest.

Last Saturday, I drank an alcohol-free beer, listened to music, and sat upright (in my hospital bed) for about 30 minutes. And now, because of that, I have PEM (post-exertional malaise, a hallmark symptom of ME/CFS). 1/8

#pwME #MECFS #SelfDocumentary #Photography

A black and white image. There is a close up of a man’s hand and a bit of an arm can be seen, just below the wrist. The hand is in the middle of the photo and its resting on a bed sheet. The hand is holding a bottle of medicine in its palm. The medicine is Propral.

Last summer I lost some of my baseline. It was because LDA started to become less effective. It’s my primary medication and the one that keeps my head above the water. A small increase in its dosage helped me to gain some of that baseline back. 1/3

#MECFS #pwME #photography #selfdocumentary

This week it was time for a refreshing cleanup. I made a short video about it.

As I’m a severe #pwME I can’t shower much. So the cleaning has to be done in a different way.

I can trim my beard, but for the rest of it I need some help from my mom - she’s my caregiver.

#selfdocumentary #MECFS

A black and white image. The author of the post is laying in bed, he’s a man in his 30s. He has a beard and a moustache. You can see his head and part of the shoulders. His head is turned sideways and his looking at the distance. The picture is dark, the harsh light is hitting his head and lighting his facial features, like his Roman nose. He is positioned in the left side of the photo and is looking at that direction. Behind his head is a lot of negative space, there is a part of his pillow, that is under is head, and part of the bed is shown.

I feel numb all the time. You have to detach yourself from the reality because it’s too painful to live like this. ME/CFS does this to you—it makes you feel empty. 1/9

#MECFS #pwME #photography #selfdocumentary

A black and white image. It’s a view of a ME/CFS patient’s bedroom, which is darkened. It’s taken by the author of this post. He is laying in the bed, the bed is in the right lower half of the photo. He has a blanked over him, as it’s morning. In the right side of the photo there are: two paintings hanging on the walls and two lamps on the wall. Also a bed that’s lifted sideways in the corner of the room. In the right side of the photo the room’s door is fully open and you can see a hallway and after that a living room. The sun is shining through the living room’s window and the rays can be seen in the bedroom. That left side of the photo is bright in contrast to the right side. In the middle of the photo there is a chair, next to the bed. There’s is a CPAP machine on the chair, some paper towels, and hearing protectors.

Today, in the morning, a few bright rays of sunshine managed to reach my darkened room. It’s almost as if the sun is reluctant to show itself in this part of the ”world”. 1/5

#MECFS #pwME #selfdocumentary #photography

A black and white image. The author of the post took a photo of himself through a big mirrored closet doors. His sitting in a wheelchair, but much of the chair can’t be seen. He has a fleece sweater on. The camera covers his whole face as he took the photo. Behind him is his shadow and some rays of sunshine/light.

New year, huh? I don’t know what to think about that. These ”milestones” are nowadays just strange, as you are chronically ill. The passage of time is cruel, as you rot in bed and you feel like your life is wasted away. 1/10

#MECFS #pwME #selfdocumentary #photography

A black and white image. The author of the post is laying in bed, he’s laying on his back. He has sweatpants on and his upper body is naked. Her mother is leaning over him and washing his upper body with a cloth. In the far left of the image a wheelchair is partially shown.

A black and white image. The author of the post is laying in bed, he’s laying on his chest. He has sweatpants on and his upper body is naked. His mother is leaning over him and drying his back with a towel. In the far left of the image a wheelchair is partially shown.

A black and white image. The author of the post is laying on his back, in bed. He has only boxers on. There’s a larger dish on the bed, with water and soap in it. His other foot is out of the dish. The other foot is in the air and his mother is drying it with a towel.

A black and white image. The author of the post is sitting in a hospital bed. The bed’s back is lifted so he can sit. He’s only wearing boxers. Her mother is near him and is washing his head/hair with a cloth.

I’m fortuned that I’ve help from my mother. We’ve come up with other solutions to keep me clean. Once every two weeks we do a more thorough cleaning in bed. We wash my body and my hair. 3/5

#photography #selfdocumentary

A black and white image. The author of the post is laying in bed, you can see his head and shoulders. He is in the lower half of the photo. There’s a pillow under his head. His face is turned towards the camera. Behind his back, his mother is using a hair clippers to cut his hair short. They are cutting the back of his head. The mother is leaning over him.

A black and white image. The author of the post is laying in bed, you can see his head and shoulders. He is in the lower half of the photo. There’s a pillow under his head. You can see his side profile as he’s laying on his back. Behind him, there’s his mother, she has hair clippers in her hand. The mother is looking at him and evaluating the cutting.

A black and white image. The author of the post is laying in bed, you can see his head and shoulders. He is in the lower half of the photo. There’s a pillow under his head. His face is turned away from the camera. Behind his back, his mother is using hair clippers to cut his hair short. They are cutting the side of his head. The mother is leaning over him.

A black and white image. The author of the post is laying in bed, you can see his head and shoulders. He is in the lower half of the photo. There’s a pillow under his head. His face is turned towards the camera. Behind his back, his mother is using hair clippers to cut his hair short. They are cutting the back of his head. The mother is leaning over him. There’s motion blur in the picture, as the mother is moving her hand quickly, the hair clippers is also blurry.

Yet Another Thing I’ve Lost

Usually once a month we cut my hair. I used to have a long hair for a couple of years. I started to grow it when I still had a mild #MECFS and I tried to maintain a somewhat normal life. 1/7

#pwME #selfdocumentary #photography

A black and white image. The author of the post is laying in bed, ready to go to sleep. You can see his upperbody and head in the right side of the image. There’s a lamp on the wall above him. It’s the only lightsource in the room. The author’s mother is standing in the doorway, on the left in the photo, there’s more light peaking from the doorway. She has a white t-shirt on and dark pants. They both look at each other. In the middle of the photo there’s a chair which has a CPAP machine on it, some paper towels and hearing protectors.

Good Night

Every night this routine of ours is the same: when everything is done for the day, my mother closes my room’s door, so I can go to sleep. I can’t close the door myself, I can’t just leavy my bed like that. 1/3

#pwME #MEcfs #selfdocumentary #photography