Life forced to "lay flat"
Sleepiness can come at any time, perhaps during meals, when going to the bathroom, or even when running.
Someone drove the truck into the ditch in a dream, and somebody suddenly fell asleep in the workshop, and his finger was cut off by a lathe.
Hypothalamic secretin deficiency, which can regulate the sleep and wake cycle, is the first change that occurs in the body. Then, like the fall of dominoes, their lives begin to become uncontrolled-there will be no containment during the day. Sleep, awakened by successive nightmares at night.
The disease they are suffering from is called narcolepsy.
At present, there are more than 90 kinds of sleep disorders known to mankind, and narcolepsy is one of them.
Unlike ordinary people, they can fall asleep in only a few minutes or even a few seconds. After falling asleep, they do not experience non-dream sleep and then dream sleep, but jump directly into dreams from being awake.
Some people describe it as "the senses shut down automatically" during the "second sleep" during the day, and some people describe their unconscious state as "like a zombie".
Sometimes dreams are an extension of the real environment in the last second, and nightmares are extremely real and tangible.
The sleepiness that drowned them suddenly appeared once every three or four hours.
At night, nightmares come with screams, cold sweats, and tears, and sometimes I can’t move, "body and heart are like being wrapped in a wet towel."
Some students will take sleeping pills in the night before the exam and stimulants during the day.
There are no authoritative global statistics on narcolepsy. According to a narcolepsy charity organization in the United States, about 3 million people worldwide are troubled by this incurable sleep disorder of unknown cause.
Calculated according to the incidence rate of 0.02% of the population, there are about 700,000 patients in my country, but currently only less than 5,000 have been diagnosed. Patients often have four typical symptoms of daytime sleepiness, sleep paralysis, sleep hallucinations, and cataplexy.
Due to poor sleep quality, patients often need to spend more time sleeping.
A patient in the third year of high school said that her classmates learned at one or two in the morning every night, but she could only get to bed in anxiety at 11 o'clock in the evening.
At the end of lunch, a salesman had to lie down on the table and take a nap when his colleagues were rushing to the computer. Otherwise, he would hang his head uncontrollably in front of the boss in the afternoon.
They are sometimes labeled as "lazy" and "not enterprising".
Few people know that it is the "sleeping" disease that makes them lose the opportunity to work hard.
One patient summed it up like this: "If you have a disease of wealth, there is no life for wealth." Someone compares himself to Nobita who wants to learn badly, behaves badly, is bullied by friends, and is scolded by his mother in cartoons. "I am Nobita, but I There is no Doraemon, and no Shizuka."
collapse
When sleepiness strikes, ordinary people can hardly understand the pain of fighting with physical instincts.
The subjective experience of narcolepsy patients is similar to that of sleep deprivation. A father used to stay up for three days and three nights in order to understand his sick son.
In an interview with a reporter from China Youth Daily and China Youth Daily, he recalled that at that time, his consciousness “can only control 20% of the body”, he could not walk in a straight line, and he could not distinguish between day and night. “Has his face been swollen or swollen. Confused".
According to the “Chinese Narcolepsy Diagnosis and Treatment Guidelines” issued by the Chinese Medical Association Neurology Branch, the high incidence of narcolepsy is 8-12 years old, and it will allow children who actively answer questions in class in the last second. , Snoring loudly in the next second.
Sleepiness often strikes when concentration is high, and dreams arrive earlier than closing eyes.
A patient recalled his helplessness in school: when he opened his eyes, all the words on the blackboard were changed.
In order to stay awake, they "pinch where it hurts" during class. Some people use compasses to "tie themselves into a sieve", some use small clips to pinch themselves, and they woke up to find that the tip of their little finger was black.
It's all useless.
After the sleep cycle collapses, the inconvenience of life ensues.
Traveling is the most embarrassing time. When taking the bus and subway, they dare not sit down, afraid that once they relax, they will fall asleep and sit over the station without paying attention.
A male patient accidentally fell on someone else and was directly awakened by his big mouth; someone fell asleep suddenly and the phone dropped again and again, and the tempered film broke and he didn't bother to replace it with a new one.
Cataplexy induced by sleep-wake conversion dysfunction can also affect the quality of life of patients. They will have local skeletal muscle weakness under emotions such as laughter and anger. The facial muscles of the milder are loose, and the severer will collapse to the ground.
A female patient loved beauty before she fell ill and liked to joke, "It's the center wherever she goes."
Now she dared not walk into the crowd and no longer laughed happily.
A mother dared not hold her daughter for fear of throwing the child to the ground with excitement.
Fear of playing hide-and-seek with her daughter, "When I am happy, my legs become weak and I will fall in front of her."
Most patients are used to being alone.
Young patients will repeatedly touch their lips, stick out their tongues, and squeeze their fingers during cataplexy, and they will inevitably become an alien in school.
By the middle school stage, it is difficult for them to socialize normally because they are sleeping during and after class.
Because dating and phone calls will suddenly "disappear", the most frequently accused of being "lazy" and "irresponsible" during a breakup.
A patient told a reporter from China Youth Daily and China Youth Daily that he once asked the cause of sleepiness under questioning by a colleague, and he got "the same look in the eyes of animals in a zoo."
Most of the time, they will use any one of cervical spondylosis, insomnia, and insufficient blood supply to the brain to cover it.
From the appearance of symptoms in junior high school until now, the 28-year-old Zheng Kun has learned to shut up.
The leader always said to him, "I have to do several jobs like you are so old, and I don't have time to sleep at all. If I have a bad attitude, get out." When he just graduated, he would just say "I quit."
"Not anymore. It's hard to find a job." He would just lower his head and say to the boss, "Yes, I pay attention."
Attention is useless.
The patient had to take regular naps during the day to stay awake, but Zheng Kun gritted his teeth and did not take a lunch break when he was out for business once.
When I was about to cross the road in the afternoon, I suddenly lost my consciousness. I heard the sound of a brake close at hand. When I looked up, I found that there was a red light on the opposite side. I was standing in the middle of the road.
He would not tell his friends about his illness, because over the years, most of the friends who have listened to him have had doubts in their eyes and envy in their mouths.
Compared to him, friends who suffer from anxiety and insomnia can gain more sympathy.
"Don't bow your head, the crown will fall, don't talk, your friends will laugh." He reluctantly quoted a joke on the Internet.
Patients were first lost in dreams that are several times more than ordinary people, and then lost in the negative evaluation of people around them. Some people describe this process as "like falling down in the endless snow."
In Zhihu, under a question and answer about narcolepsy, the highest praise message wrote: "This disease tests psychological quality."
detour
If the diagnosis cannot be made, the patient will always be trapped in self-doubt and self-blame.
22-year-old Zhou Wei has just completed his undergraduate correspondence course.
He fell ill in junior high school, and his grades fell from the top ten in the class to the tenth from the bottom. He didn't enter high school and went to a technical secondary school.
He was diagnosed only last year. "If I knew it was a disease and took the medicine earlier, I might be on the university campus now."
Statistics in the "Guidelines for the Diagnosis and Treatment of Narcolepsy in China" show that it takes 2-10 years from the onset of narcolepsy to the diagnosis.
Han Fang, director of the Sleep Center at Peking University People's Hospital, has seen too many misdiagnosed patients.
Except for sleep specialists, doctors in other departments lack relevant professional training, making it difficult to diagnose this rare disease early.
Many people have done brainwave tests, blood tests, leg muscle tests, personality tests and other "head to toe" checks before, but they are judged to be normal.
Due to local muscle weakness during cataplexy, some people always have horror hallucinations before going to bed. Epilepsy, depression, and schizophrenia are also common in the early diagnosis of some patients.
A 52-year-old patient was treated as depression for 6 years and took more than 10 kinds of medicine. A physical examination last year found that 5 items of liver function were unqualified. The doctor said it was drug poisoning.
But because of the large doses, drug dependence has formed. "If you don't take it, you can't walk." She can only take it with liver-protecting medicine.
It was not until I saw news about narcolepsy on TV that I decided to go to the sleep department for an examination.
After doing polysomnography and multiple nap latency tests, she was diagnosed with narcolepsy.
Local hospitals have a low diagnosis rate of narcolepsy, and most patients "self-diagnose" by searching for information.
A high school student found that he would be sleepy during and after class, and it was useless to drink wind oil. After checking the Internet, he vaguely felt that it was narcolepsy.
But the county hospital said it was depression and the city hospital said it was epilepsy. The Taoist invited by her family said she was "possessed" and sprayed a mouthful of "shen water" on her face.
She begged her family to take her to a big hospital in Shanghai, "That was my last chance."
There, her judgment proved to be correct.
Some people suppressed it longer.
A mother brought her 20-year-old son to Han Fang, who has been treated for schizophrenia for 5 years.
The son never admits it in his heart, but the mother does not believe his words.
During the consultation, I heard my mother say that she was schizophrenic, and the accumulated anger suddenly broke out, and she slammed her fist on her head.
Before the special needs clinic on the 5th floor of Peking University People's Hospital, the family members flipped through various test reports and payment slips. A thick pile of diagnosis results in the armpit folder recorded the footprints of running for the child.
Han Fang has comforted many family members who are worried about their children’s learning. “Excessive hopes to get rid of the roots, so-called special drugs, and easy to be deceived by all kinds of false information on the Internet.” There are parents who have encountered no less than 10 scammers in 10 years. “Just say it can be cured. Okay, I will try."
Even after the diagnosis is passed, treatment is another mountain in front of patients.
Narcolepsy will accompany for life. Existing drugs can only relieve the symptoms of drowsiness and cataplexy that most affect the lives of patients. If you want to maintain a normal life, you need to take it for a long time.
These drugs belong to the state's first-class controlled psychotropic substances, and they can only be prescribed for 7 days at a time. Each time they are prescribed, a doctor with the right to prescribe must be registered.
A single mother in Xinjiang "owed a debt" because she went around to invest in doctors. She traveled to hospitals in Xinjiang to no avail and came to Beijing to be diagnosed.
Every time she prescribes medicine, she takes a three-day and three-night train to Beijing. She relies on being a real estate agent to pay off her debts and earn her children's tuition and medical expenses.
She has to work most of the time, so she can only ask someone to register and bring the medicine. The cost is 300 yuan each time, which is equivalent to the price of a box of medicine.
Han Fang believes that "no medicine is available" is also the reason why it is difficult to standardize diagnosis and treatment.
Mainland China has not formally approved any drugs for the treatment of narcolepsy. For more than ten years, only a few wakefulness-promoting drugs and antidepressant drugs can be used for treatment. Some hospitals are difficult to diagnose and prescribe drugs cautiously because of super adaptation. There is a greater risk of symptomatic medication.
Zhan Shuqin, executive director of the Chinese Sleep Research Association and chief physician of the Department of Neurology of Beijing Xuanwu Hospital, has been in contact with narcolepsy patients since 2005. She believes that if it can be detected and treated early, most patients will be able to return to 70% to 80% of their normal lives.
In addition to drug intervention, she recommends that patients exercise regularly, take active naps at fixed times during the day, and establish a good routine.
She believes that the diagnosis and intervention of patients should also go out of the hospital.
The psychological problems faced by patients in returning to society are what social workers need to pay attention to.
A 31-year-old patient could not find a job, did not like to go out, bought lottery tickets, played games and overdrawn his family bank card.
The 55-year-old mother didn't dare to think about it, "I won't be stunned by death".
Family is the first stop to provide psychological support for patients.
Some patients, because their father felt that they had insufficient willpower, started when they met his father. They had not lived together for 3 years.
As soon as a family member saw the child sleeping, he vigorously woke her up and said to others, "Every time I watch her sleep, I want to beat her severely." In the eyes of these family members, the child's abnormality can be summarized as "disobedience." , Can't mention it with others, mentioning "injury self-esteem".
Zhan Shuqin sometimes feels that he is not treating a disease, "is treating a family."
After 34-year-old Wang Ming came out to work, he didn't take the initiative to call his father again, and made noisy calls.
Once he was sitting at home and fell asleep, and his father asked, "Why can't you bear it?" Wang Ming pointed out that his father had appendicitis, and he even shouted pain after he was given anesthetic. "Why didn't you bear it?" His father said with a straight face, "I am. That's sickness, what are you doing?"
Three years ago, Wang Ming joined a group of 708 patients with QQ, but later withdrew because he couldn't understand the parents who had "too high expectations" in the group.
"They kept tossing about acupuncture, moxibustion, worshiping Buddha, and all kinds of weird things." As a patient, he just watched, and the pressure on his body suddenly increased. "They didn't accept from the bottom of their hearts that this is a disease. , It is a disease that cannot be cured."
Lying flat
Misunderstandings about patients spread from the family to the outside.
The family member of the patient with the online name "Sky" is the owner of a QQ patient group. In the past 13 years, he has contacted 1,200 patients and their family members. Many of them have been dropped out of school because of dozing off. "People say your child is not suitable for us. School, what can you do?"
When Zhou Wei was in junior high school, the teacher often called his parents and said that he had "bad attitude to study". After a class teacher talked to the parents, he dropped out of school for half a year and failed to continue his studies.
When he was young, he was still a little dissatisfied. After being diagnosed last year, he felt that he was "lost."
The results of the examination showed that the amount of his hypothalamic secretin was one-tenth that of a normal person, and he could not recover well after taking medicine.
"You can only lie down." After junior high school, he began to close himself, "It is also a vicious circle. You are sleepy, your classmates' parents ignore you, your heart is weak, you don't want to contact people, you are more and more homeless, you can only sleep. Later this illness became an excuse for self-giving up."
He just lost his job as a warehouse clerk.
In order not to let the boss find out, he could only squint for a while while pushing the car into the warehouse, or leaning against a shelf in the warehouse, pretending to be looking for something.
"Let me sleep for 5 minutes," but these 5 minutes ruined his job.
A survey in the United States in 2018 showed that 1 in 4 narcolepsy patients had been fired or demoted due to drowsiness, and 68% of patients said that people around them did not think they had the disease.
Wang Ming has changed jobs more than a dozen times since he became ill.
He used to process wigs with an ironing board on a wig production line in Dongguan. Later, because he was always asleep, his hands were burned several times.
On the day he left Dongguan, he dropped his head in the taxi again. When the driver woke up, his brain was still dumbfounded, and his cell phone, wallet, and medical records were all left in the car and hurriedly got out of the car.
Now Wang Ming can only work in a small factory in his hometown. The boss is easy to talk and won't scold him for being lazy, but the factory's efficiency is not good, and his salary has not been paid since October last year.
In the patient group, he found that many patients had dropped out of school due to illness to work, but they were continuously dismissed, including manual workers such as takeaway brothers, assembly line workers, and truck drivers.
Some people broke their arms and cut off their fingers because they fell asleep at work, and they had to change places to continue working.
Some of the group friends who are seriously ill have to feed themselves by picking up tatters and gnawing on the old.
Wang Ming described everyone as "dumb eating coptis", and the boss drove people out and blocked their mouths by saying "cannot complete the task."
"When I get rich, I'm going to shoot "I'm Not Sleeping God"." He said in the QQ group.
The head of the narcolepsy patient organization "Juezhujia", Bao Mindong, is a patient and a mother.
Although the daughter sometimes is dissatisfied with her mother that she sleeps too long and cannot play with her, she always covers her with a quilt when her mother sleeps.
The daughter knew that her mother was sick and was very tired. "There is nothing in her eyes that should be sick, and nothing should be sick."
She has worked as an insurance consultant. Before meeting clients, she had to go to the agreed place to sleep for a while. After leaving, she had to sleep on her stomach, "otherwise the coffee shop would not be able to get out."
Many patients will sleep for an hour before important activities, "but when I make these plans, it has already affected my life. If I am a normal person, I don't need to prepare in advance for fear of falling asleep."
"Our employment scope is very, very narrow." The consensus among the patient group is not to engage in high-risk, high-concentration, and high-precision work.
The son of the group leader Sky likes ships, but he knows that his son cannot be a soldier.
The college majors he planned for his son were design and art. “Playing the piano is good, at least there is muscle memory when you fall asleep.”
A parent from a rural Liaoning village in the group works three jobs a day, in order to make money to enroll one-on-one remedial classes for the children in high school. “No matter how dirty or tired, just give more money.” She kept watching the adult patients in the group. I don’t want my children to be the same as them in the future, and they don’t have the right to choose. "I just want him to be admitted to university."
The class couldn't keep up with the progress, and the child cried, and she also cried.
At night, the child was doing homework. She watched the child write the answer on the calculator, and the pen fell off the moment she copied the paper.
The child fell asleep again.
She cried again.
The sky named the QQ group "Clear Blue Sky", because once he cooked Chinese medicine for the child and looked at the blue flame, he wanted to hold up a blue sky and let his son fly freely like a bird.
But remembering that one-third of his son's time was stolen by this disease, he asked himself in his heart, when will his son be free?
True freedom comes when it is truly understood.
Every time Bao Mindong goes to organize public welfare forums in various places, he will hold offline patient meeting.
They shared the pain of sleeping and talked about their strange dreams. Even if someone yawned and the muscles on their faces were drooping, no one would look sideways.
Someone also suggested finding a place after the meeting and sleeping together on their stomachs for a while.
She feels that this kind of company can also be done by ordinary people, "just need to accompany him, protect him, and trust him when he is asleep."
(Zheng Kun, Wang Ming, and Zhou Wei in the text are pseudonyms)
China Youth Daily·China Youth Daily reporter Jiao Jingxian Source: China Youth Daily