Damn, I do not accept that my life is over!

Let me live!

Patrick is 19. His American football gear is in his closet, and in the corner of his room his electric guitar lays on the shelf next to the brilliant lyrics he wrote. His songs have a meaning, not just modified, banal versions of some well-worn songs that were eventually on the top of the charts. No way. Patrick’s music gets down to business and strongly suggests that the songwriter is not a wimp, but instead confident and that he has something significant to say. When Patrick wrote the songs/music, he went to high school, which earlier posed no problem for him, and he enjoyed a life outside of school as well. His buddies were always with him. Life then was to be lived! But now the American football equipment, the guitar, the unfinished recordings, and song books remain on the dusty shelves.

Those were the times

When Patrick lies on his bed in his room it seems like decades since he was with his band buddies on the stage. Sometimes he has flashbacks where he again sees the faces of the girls in front row of the stage, glowing, looking reverently up and so moved by the band’s damn good music. When these flashbacks return, Patrick is reminiscent of the life he used to live. Patrick would like to scream really loud so everyone can hear:

“My body and my pain hold me prisoner. I cannot leave and live like others. A broken body makes me a cripple. It forces me to not always do things that I would like to do. But I want to live.”

Causes and effects

Patrick is sick from chemicals and his body has developed an extreme form of chemical sensitivity (MCS). Some chemicals have the capacity to sensitize the body. In medicine, this is well known that some chemicals like formaldehyde, isocyanates, and some pesticides are able to cause illness. Everything has played a role in Patrick’s current condition. His father was a chemist and had 30 years of contact with chemicals which are capable of damaging genes. No one can define precisely the effects of the countless years of exposures from the not so harmless chemical cocktails where Patrick’s father worked. The fact is, that Patrick’s father, because of work-related health issues, no longer has his health and is seriously ill. Perhaps the house where the family lived also played a role in the illness. Seven times they had high water which left mold on the walls. The walls were washed extensively with chlorine, a highly toxic chemical. Also the wood preservatives in the house could have played a part in Patrick’s state of health.

Others have lived at least

The average age of people who are chemically sensitive, is from 35-45 years, according to studies. There are also sufferers who are much older and some who are still toddlers, but the majority of sufferers had a life before MCS. For Patrick, it’s different:

“Excuse me, I don’t want to offend the others, but the other MCS sufferers were allowed to enjoy prior life experiences (youth, school, training, travel, friends, partnership, etc.), but I was denied everything from the beginning. The best time of life, my youth, has not been granted to me. On the contrary, I am going through hell, but no one is interested, because they do not believe me.”

Ciao buddy

After Patrick broke down completely, the compassion of his buddies and classmates was just great. They came to visit him and provided him with information from school. That gave him the opportunity to continue his school for awhile. When that was no longer possible, he tried getting his education on the internet, via a correspondence school. But now that is over. No more calls, no more visits. Patrick experiences unbearable pain as he feels like he too is covered in dust like his guitar. The girlfriend he had whom he wanted to build a life with, now also lives a life without him, perhaps with someone else. Patrick experiences pain on another level besides just the excruciating physical pain of the illness. He is furious and says:

“I cannot believe that since I’m not out there, I must not be forgotten and do not exist. My struggle must not be in vain.”

“It is hard to accept that everything I have achieved to this point is destroyed.”

“I have resigned myself that I will probably always remain living alone. There is no compassion for this disease. In fact, on the contrary, I am immediately excluded. What girl or young woman is prepared to make such a sacrifice, and how will I even find a person when I need to live a life of isolation? Forget it. This also applies to other friendships as well. ”

“Although various people helped me earlier, now only two friends remain – I’ve always given everything and now … I’m just dropped, since I cannot keep up and have become too annoying or too complicated to all the others.”

To go out at least once

Besides all the bad luck Patrick and his parents experienced in the past, they also lost their most faithful companion too. So Patrick’s mother bought a new dog so that her son has some life in the house and finds some comfort through the love of an animal. The decision was good for the dog and he is very fond of Patrick:

“As much as I would love to be in nature for a couple of hours with our dog for training or just playing only with him, I am not even granted this.”

Simply cut the strings and let the frustration out

If Patrick was frustrated, it was hard to miss. He grabbed his guitar and the sparks were flying as he sang until the walls shook. That has not happened often, but when it did, everyone in the house knew after two minutes. Music is life and a way to express yourself, to let out what the mind has suppressed. But even allowing the frustration and the anger to be let out, is no longer possible for Patrick:

“Playing guitar and singing means so much to me, but my damn body does not even allow that. The muscle weakness and pain again slow me down, and of course, my dream of American football is over.”

MCS means in the worst stage of a “life” in total isolation

Patrick is one of the MCS patients who having a life outside the four walls is impossible. It should not be confused that these people do not want to be, among others, but on the contrary, the wish and desire to do something with other people remains every day around the clock. It is not a psychological problem or fear of people. The body simply gives up when exposed to chemicals. Car exhaust, heater exhaust gases, perfumed people, houses, from which wafts the cleaning products. All chemical cocktails present a difficulty for chemically sensitive people to have a chance to move about.

A short contact with the outside world means having extreme pain, seizures, difficulty breathing, collapse, or unconsciousness. The same applies for visiting. If someone comes to visit, the joy for Patrick can quickly lead to disaster. The deodorants or residues from the dry cleaners in the jacket, fabric softeners, which cannot be totally washed out will make the visit impossible. Utter nonsense? Not at all. Who will make the effort to find appropriate ingredients for “everyday products” that will bring about severe consequences for a man whose body is hypersensitive? What companies will makes the effort to accommodate hypersensitive individuals as they produce products? Not even most doctors will attempt to understand this chemical hypersensitivity. This is due partly out of ignorance, because they have never heard of the disease, and simply because they lack time to investigate further. And if doctors are not smart and declare the disease as a quirk of convenience, how can ordinary people understand those with MCS?

Patrick’s opinion on MCS:

“MCS is the worst disease out there; sometimes I wish I was a paraplegic. I know this sounds harsh, but I would not be so isolated, left alone, not credible, and would have no pain. I could travel in spite of this handicap, going almost everywhere, going to concerts, meeting friends, and possibly make training, and, and. “

The whole family is ruined

Patrick’s parents are willing to do anything for their son, so he can have his life back. But MCS is too complex to just fight the disease with medicine and a few natural remedies. One must start by establishing a clean living environment. Patrick and his father would need a living space that is chemical-and mold-free as much as possible. But how do you implement that? The house in which they have is hard to change due to the financial loss due to his father’s illness.

Help from authorities? No

Patrick should actually have a good case for the authorities to help, but because he has no education, there is no funding, no basic security, which is humiliating for the young man. His mother says:

“We get help from nowhere, in fact, it is quite the opposite. We are harassed by authorities and they make demands on Patrick which he cannot satisfy. Anyone who can count to three must see that. But nobody takes the trouble to look at the misery, instead, decisions are made that are devoid of any humanity. Yes, Patrick virtually exists only on the card. This illness ruined my two men and those who might know how to help and change things for us, look away too easily! ”

“Many people ask me, how has this total isolation been for over the last two years? They say to me, “I would go mad …. I would go crazy … I imagine the bad, and, and …” They also ask, “Where does Patrick, or where do you get the strength to keep going?”

The response from Patrick’s mother: “You can see that Patrick lives and we also manage. Somehow we are probably fighting spirits and do what we try to be bold, brave, and strong willed to survive. The struggle for justice makes us stronger. “That’s what Patrick’s mother says to the outside world, but inside she often thinks, how long does will the body last, like the heart muscle. Every day she must be available around the clock for her men. Every day is actually a struggle for survival, for Patrick, as well as his father.

Optional: a human decision

That which was given to Patrick and his parents since March 2009, is staggering. His parents submitted an application to determine his level of disability. Now a court ruling says that the 19-year-old man who is suffering from unbearable pain all day, and reactions to chemicals must go into a hospital. The hospital has assured the court that it is equipped for emergencies so there shouldn’t be any problems.

  • What if he’s there and collapses completely? Who bears the responsibility for him then?
  • Who pays to stay in a hospital environment abroad, because in Germany there is no help?
  • Can a normal emergency procedure help him to bounce back?
  • What if not?

There are no environmentally controlled hospitals for MCS patients in Germany. No hospitals can assure a complete freedom from chemical exposures at all. The hospital rooms discussed in a previous CSN article which are in Hamburg for the environmentally ill, are still not in full operation and they are also only for medical intervention, not for environmental treatment. Thus Patrick’s health would possibly be further compromised by this current court ruling the way it now stands.

So far, instead of support costs caused

Administrative expenses have already cost a fortune for Patrick, a 19 year old, with unbroken will to live. Legally, there is the possibility of seriously ill people remaining in their homes, and being examined within the safety of their own four walls. For Patrick, allowing this would be an act of humanity. This young man wants nothing more than for his disability to be determined. His disability and disease are detected nowhere better than in his own home where everyone can see with their own eyes what the illness actually means for Patrick and his family.

Authors: Silvia Müller and K. Kira, CSN – Chemical Sensitivity Network, 9 July 2011

Translation: Christi Howarth

Note: Patrick’s documents are complete before CSN.

Related articles:

Participatory Action: Help Your Local Santa Claus and the Sick Children in Your Area


A Real Santa Claus Does Not Wear Perfume

Santa has an ear for the needs of all children, including children with allergies, asthma and chemical sensitivity (MCS). Santas are always open to hear everything a child desires, meaning their secrets, worries and concerns. For many children this seasonal private talk with Santa is an important event when they can privately disclose what is really on their mind.

So this year we wish that all children, including those who suffer from allergies, asthma and chemical sensitivity (MCS), will have the opportunity to whisper something special into Santa’s ear. We have designed an action card for printing. (The best way to print the cards out is on more solid paper or light cardboard).

And because Santa Claus is known for really loving ALL children, with some help, we can make sure every Santa Claus may share the Christmas warmth with every child. Hand the Santa a Christmas card, asking them to give up after-shave, cologne, fabric softener, strong smelling deodorant, and other fragrances this season. Whisper in the ear of the Santa Claus when presentating the card, that this small favor of being fragrance free will make all children’s hearts and eyes glow with gratitude.

ACTION CARD >>>

The real Santa Claus does not wear perfume, because he loves all children. Even those with asthma, allergies, or chemical sensitivity.

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Spanish Action Card >> El verdadero Papá Noel no usa Colonia

German Action Card >> Der echte Weihnachtsmann trägt kein Parfüm

Facts about Perfume, Scented Products:

Film about Chemical Sensitivity: THE BIRDS OF THE MINE – LOS PAJAROS DE LA MINA

On November 2009 I was interviewed on Carne Cruda, Spanish radio program, to talk about Multiple Chemical Sensitivity and one of the listeners of the program, the videographer Víctor Moreno, was so impressed that he quickly contacted me to say that he wanted to make a short film about MCS to help us to raise awareness of this terrible disease and he asked my opinion and if I wanted to collaborate with them. Obviously I told him that they could count on me for what they wanted.

On March they began filming “The birds of the mine”, the first short film about Multiple Chemical Sensitivity in Spain, and now we can finally present the trailer and announce that its debut will be next December. When this project began, I had the honor of reading the script, because they wanted my opinion, and then I saw some scenes of the shoot and I can assure you that is very, very impressive, as you can deduce from the trailer.

Autor: Eva Caballé, No Fun, Oct. 25, 2010

Related Articles:

The life of a young woman is threatened again by the spraying of toxic chemicals

Do you remember, around the middle of 2010 when the parents of a young Spanish woman, Elvira Roda, who suffers from severe chemical sensitivity (MCS), asked for help? Do you recall that Elvira was living in a specially prepared, very expensive, pollution-free house where the city applied pesticides?

EMM Blog: Cry for Help – Young Woman in Danger

This seriously ill woman collapsed from the nerve agents, which were sprayed and resulted in putting her into a critical condition. For days she was in the worst health state possible and had to sit in a lawn chair by the sea. The parents tried to stop the city leaders from this application of pesticides, neurotoxic organophos- phates, but it was in vain.

A petition for Elvira, was released worldwide on many MCS blogs and by organizations. People from different countries signed, asking the city officials to refrain from spraying pesticides outside the home of this young woman.

Elvira’s life is in danger again

A day ago the parents of Elvira again asked for help because the city of Alboraya has now begun to spray a herbicide.

Please read her parent’s letter below and support by signing the petition for Elvira.

For Elvira’s sake:

Thanks to everyone who supported Elvira Roda by signing the petition to the Alboraya City Council in Valencia , Spain and asking them not to use chemicals that are harmful to humans and the environment, but instead requesting them to find healthier alternatives.

Our family has tried everything possible to prevent further spraying, but unfortunately today on October 5th, the Alboraya City Council will begin using new fumigation using Plus Roundup (glyphosate), and other environmentally harmful chemicals.

We have requested them to use environmentally friendly, natural alternatives, and asked the city council to inform the public prior to the spraying, but both requests were unsuccessful. We therefore believe it necessary for the health of all, to continue to collect signatures on the petition. We need you. With these efforts, we will certainly succeed.

Please help Elvira Roda! Tomorrow it could be one of you, who needs the help of us all.

For more information regarding Elvira’s situation, please see:

Support for Elvira Roda

To sign the petition, go to >>> Petition to Elvira Roda (sign at the bottom)

Thank you for your support!

Study could not confirm link between mental illness and chemical sensitivity

For several years the Swedish Prof. Dr. Eva Millqvist researched the disease of hyperreactivity of the respiratory tract and the environmental condition of Chemical Sensitivity (MCS). She specializes in the range of responses to respiratory irritants.

Sick from odors and fragrances

Patients with respiratory symptoms which are triggered by chemicals and odors, are commonly found in allergy clinics. According to Millqvist and her team, these health problems are not explained by asthma or allergic reactions.

German patients frequently report that after they report reactions to chemicals or odors to their allergist, the prospect of seeing a psychologist has been recommended. Whether or not this recommendation is actually appropriate for these patients, it is precisely what this new study from Sweden addresses.

Studies showed reactions

Millqvist’s previous studies have shown that MCS patients often have an increased sensitivity to inhaled capsaicin. This ingredient of chili is famous sensory reactivity. A diagnosis of sensory hyperreactivity of the airways (SHR) is proposed for these kinds of complaints.

In a recent study this renowned scientist and two colleagues, sought to discover whether there is a relationship between asthma and sensory hyperreactivity (SHR). In addition, the research team wanted to investigate whether patients with signs of SHR had increased psychiatric morbidity (anxiety, depression, etc.).

Patients were subjected to tests and questionnaires

The researchers took 724 patients with suspected allergies or asthma from an asthma center. All patients had a questionnaire regarding reactions and behavioral disorders caused by fragrant substances.

A standardized Capsaicin test was carried out and then a questionnaire was given to assess psychiatric morbidity in patients with severe chemical sensitivity to identify those who suffer from SHR.

No evidence of depression or anxiety

Only about 6% of the asthma patients from the allergy center, who participated in the study, had sensory hyperreactivity (SHR). Millqvist and her colleagues stated that this is in consistent with the prevalence in the general Swedish population. There was no significant evidence that SHR is consistent with anxiety or is related to depression.

Patients should insist on precise diagnostic evaluation

The study appeared in the July 2010 issue of the medical journal “Annals of Allergy, Asthma & Immunology.” Those patients who respond to chemicals and odors with hyperreactive respiratory symptoms should perhaps seek an experienced environmental medicine professional if their allergist makes a reference to the possibility of a mental illness.

Author: Silvia K. Müller, CSN – Chemical Sensitivity Network, 2. September 2010.

Translation: Thank’s to Christi Howarth.

Literature:

Johansson A, Millqvist E, Bende M., Relationship of airway sensory hyperreactivity to asthma and psychiatric morbidity, Department of Respiratory Medicine, Central Hospital, Skövde, Sweden, Ann Allergy Asthma Immunol. 2010 Jul; 105(1):20-3.