– site without guarantee
– Animal, Poet Maudit, Proll,
– Myalgische Encephalomyelitis, g.93.3, the body, the prison
mostly bedridden/homebound since 2017, sick since 26 Years
(I am NOT my illness, even though it made my life impossible,
are these “just” the circumstances. Of course, Circumstances can be so immovable,
so dominating, that they cement the man, his personality, be
beings ….
…. it is very, very difficult, to have such a deep level of functioning physically and
living with the fact every day, that state and politics (u.a. here with us Berset)
don't give a fuck about us, really crap!!!!
Also it's funny, to be so sick, over so many years, again and again for weeks
neuroimmune crash within the already limited framework, and yet not to die ….
And yet: somehow you get used to it. (the physical pain, that of
the extreme weakness can be felt in every cell)
Something you don't get used to, is the isolation, loneliness, the indifference of
social environment, the impossibility of change, to the movement, to hope ….
I say, I am not that disease, and I can feel this in mine, among other things
mental pain, not being able to change the circumstances, to be trapped, because
the physical metabolism is not able, to end his stasis.
Luckily I only need my brain and fingers to write and think.
However, I can feel it there too (while writing), the limits of my development and possibilities
due to the complete lack of interaction with the outside world, intimate encounters, to travel,
challenges …..
I am forced, to always stay very close to myself, since I have no counterweight
experience, since no one complements me, reflects, rubbing against me … I'm trapped ….
Of course, there is the virtual world … the digital one …. But what is that?
Talking/looking into a small device can never be an encounter, a scent
and replace spending time in nature or among people.
Okay, I can't say much more about my surroundings. I always felt like
Foreign bodies within social processes, that I don't understand. I only very
understood clear human gestures, but not the abstraction to that of Dasein
is made by the structures resp. the focus on economic more …
I do not know, what would have become of me, I would have a functioning body.
Of course I would have to make compromises, i would have to fight my
have fought out inner non-adaptability and have found a niche.
Certainly I would have made some progress. But all in all, one life is too short,
for the big changes, that the constant inconveniences demand of you ….
kinda like that.
And despite this or by accident: For me, poetry was the place of transformation from the profane
into gold. The act of writing detached me from the circumstances of life, paradoxically,
where I had to write about these circumstances …. but it lies precisely in the work of poetry
even, that the ugly and inadequate reality is transformed in the act of writing
even ….. I have never experienced anything like this as a seller …. means to write: a reality new
let arise …. no matter, what to write about.
kinda like that.
I've also started in recent years, my v.a. record short texts, u.a. with picture.
Of course I'm in the way of the text, but I still need to be able to see myself from time to time,
outside of me.
https://www.youtube.com/channel/UCvpHpjb6rvj3MIoRtmbe3Yw?view_as=subscriber
Jeanne Stürmchen unconfessional, on youtubehttps://www.youtube.com/watch?v = jbmns0fPg-Q&list=UUvpHpjb6rvj3MIoRtmbe3Yw&index=14
(2021)
(2020)
Ihttps://www.youtube.com/watch?v = jbmns0fPg-Q&list=UUvpHpjb6rvj3MIoRtmbe3Yw&index=14
The logical cosmos of the young Jeanne Sturmchen, Proll and Poet Maudit
(A little information about the disease myalgic encephalomyelitis, which is almost unknown in this country (colloquially called Chronic Fatigue Syndrome) by the Swiss Society for ME/CFS (Sgme.ch):
'ME/CFS is a neurological disease, which usually occurs after a viral infection and can lead to severe disability. Patients suffer from various symptoms such as muscle weakness, flu-like exhaustion, sensory stimulus processing disorders pain, severe concentration disorders, etc. The cardinal symptom is a post-exertional neuroimmune excision, (PENIS), a long-lasting worsening of symptoms, which are already at low physical, cognitive or sensory load follows. The exact cause of the disease has not been sufficiently researched, but among other things. are malfunctions of the immune system, of the nervous system, of energy transport and the hormone system. About 60% of those affected are unable to work, 25% are housebound or bedridden, that. 3% heavy maintenance. are worldwide 17 millions of people affected, in Switzerland approx. 16000. The World Health Organization WHO has myalgic encephalomyelitis in the year 1969 classified as a neurological disease under code g.93.3.
Although there is increasing knowledge about the physical dysfunctions in ME and CFS, the exact causes are still unclear and there is no recognized treatment. As a rule, patients remain seriously ill throughout their lives. It is all the more worrying, that there is hardly any investment in research into the disease. In the year 2017 gave the US Department of Health per ME- und CFS-Patient:in $ 15 out. The equivalent amount for AIDS is $ 3’000.1 ME has never been researched in Switzerland.
The misunderstanding of an illness
ME was recognized early on as a neuroimmunological disease. But in the early 1970s, the thesis came up, that the high proportion of young women among the patient:internally provide evidence of hysteria as the cause.2 This grotesque thesis was initially met with great rejection in the professional world. However, since no clear physiological cause could be found, the misconception began to gain traction in the 1980s. At the same time, ME became mixed up with the much more broadly defined clinical picture CFS and thereby lost specificity. As a result, there are research funds and patient support services worldwide:returned inside and one started, to treat them with harmful psychosomatic methods.3
Today, the physical malfunctions in ME are better researched and a paradigm shift has been taking place worldwide for several years. 2015 a study commissioned by the US Department of Health clearly recognized ME as a serious physical illness.4 In the same year in Norway, the Prime Minister publicly apologized to the patient:within.
“We had nothing to offer this group of patients and they were met with rejection in the healthcare sector. this happened, because there were many prejudices against this disease; that they are the result of a psychological, almost wanted illness would be. It really is a scandal! These patients were treated with a lack of respect, just because we didn't have enough knowledge."5
- Erna Solberg, Prime Minister of Norway –
More and more countries followed. 2016 the EU established a research program on ME called EUROMENE.6 2018 The Dutch Health Council has recognized ME as a serious physical illness and has done more research and better support for patients:demanded inside.7 The Danish Parliament followed a year later.8 Beginning 2019 A parliamentary debate took place in the British House of Commons, in which the poor care of the ME patient:was discussed inside. All parliamentarians:inside agreed to a motion, which demanded, that the government make more research funds available for ME, medical professionals to be better educated about ME, and potentially harmful psychosomatic treatment methods for ME are abolished.9 2020 In a resolution, the European Parliament called for the funding of biomedical research and awareness-raising campaigns among healthcare professionals and the general public.10
In the year 2021 published the British NICE new policies on ME, which various big improvements to the old ones from 2007 include:11
- It is acknowledged, that ME is a serious physical illness, which can lead to complete confinement to bed and the need for care.
- The harmful graduated activation therapy (GET) may no longer be offered.
- The Lightning Trial and similar potentially harmful and non-evidence-based programs may no longer be offered.
- The cognitive behavioral therapy (CBT) is not curative, but - as with any chronic disease - may only be offered as support in the management and mental processing of the disease.
The situation in Switzerland
Unfortunately, little of this paradigm shift has hitherto arrived in Switzerland. ME and CFS are not officially recorded. There is a negative attitude in the healthcare system and the IV classifies the diseases as psychosomatic disorders, contrary to the international research consensus. There are between 16,000 and 24,000 people in this country, whom a dignified life is impossible. Because these people are massively restricted in their quality of life, sometimes around the clock by relatives.11 At the federal level, Council of States Damian Müller demanded 2020 with a postulate (No. 20.3671) a report of research results and information, Who can be contacted for support. The Council of States rejected this postulate on the recommendation of the Federal Council 21. September 2020 from.12 For the affected patient:inside and their relatives only the impression remains, no one feels responsible and they are left to fate. The situation of those affected is devastating. Both medical care and social security are virtually non-existent. In a 2021 by the Swiss Society for ME & CFS survey conducted among patient:within13 reported less than a sixth, to have a family doctor, who is familiar with the disease. 28% have no family doctor or only one, who does not recognize the disease as such. Many have had bad experiences in a medical emergency, because the healthcare professionals do not know or do not recognize the disease. ME is largely unknown to those responsible in the social security funds. As a result, the patient:generally dependent on caring relatives for their livelihood. If IV pensions have been approved, this mostly did not happen for ME, but for a concomitant disease or even for a misdiagnosis. An absurd situation, because the disease, those entitled to a pension, was generally less restrictive than ME. When it comes to coping with everyday life, relatives also have to take on most of the responsibility, because external help is missing. The relatives care for and care for the patient without any help:within, some of whom are too ill, do the personal hygiene yourself, unable to go to the toilet or eat without help. Certain ME patient:inside are too weak, to put a drinking glass to your mouth yourself or to move around in bed.
ME-Patient:inside and their loved ones are not just dealing with a serious illness, medical undersupply and existential problems, but also subject to a social stigma. In most cases, this is not done in front of the patient's immediate surroundings:within halt. Many relationships break up because of it, and often are ME patient:Faced with loneliness inside. Many ME patient:inside lose most of their social environment as a result of the disease, often also close people.’
(Sgme: Swiss Society for Myalgic Encephalomyelitis)