EINZELWERKE | Bella von Einsiedel | Fine Art Photography

NEW HABITAT

A photo series about living with ME/CFS

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome is a severe neuroimmunological disease that often leads to a high degree of physical disability.

Often, ME/CFS begins after an infectious disease. Eg the Epstein-Barr virus and influenza are known triggers. The current COVID-19 pandemic shows that people with Covid also develop ME/CFS.

Also suffering from ME/CFS after a Covid infection, I decided to dedicate a photo series to this topic. A series that shows how it feels when the living space is suddenly limited to your own home – New Habitat. However, I didn't want to document this on the basis of pain and suffering. Instead, I wanted to use light (hope), shadow (fears) and fog (uncertainty) to create aesthetic and artistically high-quality images. Artistic images, which people like to watch and are more concerned with the backstory as a result. I also consciously use strong colours to counteract the tristesse that this disease automatically brings with it. All pictures are pure photographs (no manipulations or artificial filter) that address life with ME/CFS in an artistic, atmospheric and vulnerable way. Thus, this still growing photo series is a mixture of creative photography, documentary and art therapy.

Source: German Society for ME/CFS

I wish I'd have danced like there was no tomorrow

I wish I'd danced like there was no tomorrow. When it was still possible and taken for granted.
ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) is a serious neuroimmunological disorder that often results in a high degree of physical disability.

Well, sleep. Sleep well.

ME/CFS is a separate, complex clinical picture and should not be confused with the symptom of fatigue. ME/CFS sufferers suffer from severe sleep disorders, among other things. With ME/CFS you will only sleep if ME/CFS allows you to sleep. That can be 20 hours a day or mean insomnia for days. However, the body no longer regenerates itself through sleep.

Night N Day

Some also suffer from a sleep-rythm disorder. Sufferers fall asleep at inappropriate times (day) and then fail to fall asleep (night) or wake up when they need or want to.

Dark Moon Rising

Fire and Ice

Those affected suffer from symptoms of the autonomic nervous system (palpitations, blood pressure fluctuations, dizziness, nausea) and can no longer stand or sit for long periods of time. Many also develop intolerance to heat or hypersensitivity to cold. Normal activities such as showering or brushing your teeth can already become an ordeal.

Brain Fog

In addition to autonomic and immunological symptoms, in addition to severe fatigue (physical weakness) that severely limits activity levels, ME/CFS sufferers also suffer from neurocognitive disorders. The most well-known symptoms are concentration, memory and word-finding disorders (often referred to as "brain fog"). Many suffer from disorientation, confusion, sudden forgetfulness, mental exhaustion or the feeling that they cannot think clearly.

Welcome To Hell

Welcome to hell. Trapped in your own body. Unable to take care of themselves or leave home.

Inner Outer World

A quarter of all patients can no longer leave the house, many are bedridden and dependent on care. It is estimated that more than 60 percent are disabled.

Walk In The Park

park walk
The only walks take place in thoughts. The only green areas are indoor plants and sunsets can only be seen from the window.

Holiday IN

Holiday trips are also no longer possible. Palm trees, sun, clouds and swimming in the sea. What used to be relaxing or fun is no longer possible. Meeting friends, cinema or even reading books.

Bonjour Tristesse

A previously known and partially helpful way to prevent permanent deterioration is to avoid mental and physical overexertion, called "pacing". But since the stress level is very low and even running the household is too strenuous, it often leads to a lot of monotony and loneliness. A stable and understanding environment is extremely important. Also a therapeutic support to be able to deal with the new situation. And to reduce the risk of suicide.

Should I Stay Or Should I Go

Many of those affected also suffer from severe pain such as muscle and joint pain and severe headaches of a new type. There are also muscle spasms and general spasms. Questions like: Am I getting up? Am i going out? Do I prefer to stay in bed?, those affected ask themselves every day anew. Because the will, the desire and the drive is still there. However, the body usually does not manage to withstand the simplest desires. A deterioration in condition is usually the result.

Pills N Potions

Although the WHO has classified ME/CFS as a neurological disease since 1969, research has stalled for over 50 years due to a lack of research funding. And there is still no cure or medication for ME/CFS. Many doctors also know little or nothing about this clinical picture. Those affected are stigmatized and left to fend for themselves with no prospect of recovery.

Drowning

No help, no medication or cure, stigmatized as lazy and mentally ill. Many are misdiagnosed with depression or somatoform adjustment disorder. Affected people feel left alone and drown in their new situation. There are only two ME/CFS outpatient clinics in Germany, one of which is for children. Both have been completely overrun since the Covid pandemic and only accept patients from the area. The waiting time is many months.

Time Goes By

While the world keeps turning, your own world stands still. You can feel the body breaking down more and more. And although the number of people affected by Covid-19 is increasing, many politicians are still blocking this issue and progress is slow. Even if there are affected people with mild symptoms, time is running out for more severe affected people. Because any physical or mental overexertion can lead to long-term care.

Light Me Up

The exact mechanisms of the disease are still unclear. However, recent studies point to a possible autoimmune disease and severe disruption of energy metabolism. Sufferers cling to every little advance in research and treatment in the hope that they can soon get back to their lives.

ENTER SURREALISM

ENTER SURREALISM

NEW HABITAT