Erlend Bendiksen is 190 centimeters tall. His bed measures 90 centimeters in width. Next to it is a two-story table on wheels, with a Pepsi Max and a bowl of Ritz crackers. – I have felt very mature and responsible for many years. More than others my age. He takes a sniff. Asks mom to open the window. The room is no larger than five square meters. – This is how everyday life is now. This is what I do. Lying in a bed, either here at home or in the hospital. For almost nine months, Erlend has been bedridden. Erlend has been bedridden for the past eight months. He keeps in touch with friends through the internet. Photo: Oda Viken / news Norway’s youngest The health challenges for Erlend started early. He was only eight years old when he was diagnosed with ME. As the youngest in the country. The chronic disease affects in various ways, and has no known cause. For someone with ME, physical activity can be exhausting. You sleep poorly, are very dizzy and have poor balance. Pain in muscles and joints is also a symptom. Even with ME, Erlend was a healthy and happy boy. Played football, was with friends and went to children’s birthday parties in the class. But four years after the ME diagnosis, the challenges became bigger and more numerous. Erlend (23) remembers it like it was yesterday. Grey’s method Like most sixth graders, he was out at recess playing football. He didn’t quite understand what was happening, but suddenly his arm was loose. The shoulder dislocated. 12-year-old Erlend called his mother Linda. – She had watched too much Grey’s Anatomy, so she decided to fix it herself. A crack and a few tears fell from the blue eyes. It went well. But little did Erlend know that one day he would lose count of the number of breaks and tears. Erlend was only 12 years old the first time his shoulder dislocated. Erlend has had several hundred stays in Akutten and in hospital over the years. Erlend was an active boy who played football and went for a drive with his friends before the disease really took hold. It became everyday. Everyone around him had to learn to hook the joints into place. Even the best friend. The doctors tried to find out why Erlend’s joints could not endure the same as his friends. The answer was EDS, a rare and inherited connective tissue disease. But Erlend did not let himself be stopped. Motivated school student The shoulders became looser and looser as time went on. In the end, it became difficult to take part in sports and physical activity. Erlend had to stop playing football. Gym also became challenging. But the boy was too young for surgery. He had to drop his plans to become an electrician, and instead focus on a career without too much physical activity. The choice fell on Service and transport at upper secondary school. – I was lying at home with my shoulders in pain, doing homework and managing to keep up. Then he started having pain in his knees that made it difficult to stand and walk. At one point he ended up in a wheelchair, but the doctors struggled to find out what was behind it. He sought help in several places, spent large sums, but everyday life at the end of his teens was only a foreshadowing of what awaited him at the beginning of his twenties. Erlend ended up in a wheelchair in high school. He nevertheless completed all of his schooling at the same time as others of his age. Photo: Privat A breathing space – This isn’t really life, says Erlend. Foreigners cannot cut bread. Spread on the bread slice. Or stand at the kitchen counter. – There aren’t that many hobbies to have when you’re lying in bed. I used to play a lot online with friends, but now I can’t get down to the basement where the PC is. Erlend reminisces about drives with his friends and movies late at night. He misses it. On the days his friends come to visit, he goes a little extra far. The back problems make it difficult to sit in a chair for long periods of time. Because of the pain in his body, he is completely dependent on help, for what many see as simple tasks. So, who will help the 23-year-old every time he “cries for help”? As of now, it is mum Linda and dad Lars. But how long can they last? Linda is not at work due to her own physical challenges, and Lars has been on sick leave from his job for over half a year. When they are not at home, another family pitches in. Grandparents, aunt from Oslo, uncle from Kjøpsvik or older sister in Bodø. Because at home in the gray house in Bodø, it is not only Erlend who has been ill lately. Little sister Emine has had her fair share of struggles: Several applications – I am first and foremost a mother. At the same time, I am a coordinator, case manager, nurse and psychologist, says Linda. The municipal home service visits the family twice a day. But it is not enough for Erlend and his family. Mum and Dad handle most of it. – This is not how it should be. They are, after all, my parents, and do everything I ask and need around the clock, but they are not supposed to be my user-controlled personal assistants (BPA). And they have actually applied for BPA several times. According to Erlend, the application last summer was just a mess. – Suddenly I was told that I had declined the offer of BPA. I had not received any feedback that the application had been received, accepted or rejected. Apparently the application had also disappeared. So he searched again, hearing nothing. Without warning, he lost his case manager in the middle of the process. When little sister Emine fell ill in January, the family applied for help again. According to the family, the municipality also received inquiries from the Løvemammaene and the Patient Ombudsman. This application for BPA was also refused. Inside Erlend’s small room, there is room for a chair. It uses mum, dad or other visitors. New refusal After nine months, the family’s situation is still unclear. Last week, Erlend received a third rejection of its application for BPA. The rejection was 12 pages long. – The way I interpret it, the municipality sees that Erlend needs BPA, but they want him to move out of home first. For almost a year it has been impossible, says mum Linda. The case is now with the State Administrator in Nordland. Bodø municipality has been given the opportunity to respond to the criticism from Erlend and his family. In an e-mail to news, they write that they await the State Administrator’s conclusions. – Bodø municipality follows up the user in dialogue with the user, says Arne Myrland, department director for health and care in Bodø municipality. Erlend says he is considering a lawyer. Asking for more help The 23-year-old wonders why the municipality describes him as too ill for a BPA, when his parents take care of him around the clock. – It doesn’t work in my head. So far, he has been assigned supervision of the home service for one year. That means two visits a day. – We don’t feel that we are demanding that much, but we want Erlend to get help. Seven hours a day, so that my husband can go to work again and we can have an everyday life together, says mum Linda. The municipality has also proposed giving Erlend a place at the Sølvsuper health and welfare center in Bodø. – It is a center with 80-90-year-olds. It is not something for a young man like Erlend. He wants to be in a safe environment at home, especially now that both his mental and physical health are challenging, says Linda. Erlend calls the dog Neo a “happy pill”. He came to the family so that Erlend could go for a walk. But just then he became bedridden. Photo: Oda Viken / news – Take care of the good memories Erlend is one of between 500 and 600 Norwegians who have the diagnosis. The symptoms can be treated, but the diagnosis must be lived with for the rest of your life. This is precisely why treatment and rehabilitation are so important, according to Line Blålid, who is the head of the Norwegian Association for Ehlers-Danlos Syndrome. – If you don’t train your core muscles, you run the risk of the joints becoming more unstable. It is very important to be active and also learn to save energy. You must be aware of where you use your energy, and how. The worst thing you can do is become inactive. But getting such long-term treatment, at a rehabilitation institution or with other competent physiotherapists, can be difficult across the country, according to the association. – The only right this patient group has is free dental follow-up, as teeth can become loose. Before, we also had physiotherapy and a heated pool. Unfortunately, many in this patient group receive disability benefits already as young people. Line Blålid is a leader in the EDS association. Photo: Private But there are good institutions for training. One of them is the Valnesfjord health sports centre, which is just a few miles outside Bodø where Erlend lives. – They have great expertise in EDS. An additional plus is that they can also offer schooling while children are there. And it is needed. The treatment of EDS people is both time-consuming and can trigger pain during and after exercise, says Blålid. With good help to manage their situation, many can function quite well. – It is very difficult to plan everyday life. One day you can function, the next you can be bedridden. It is important to take care of the good days and create good memories. It is a replenishment of memories that help you on the days when you are so tired and everything hurts so much that you can only lie down. BPA is a fantastic tool for giving people with functional impairments a tool to be able to live as close to a normal life as possible, says Blålid. A helping hand For almost seven months, Erlend has received assistance from the Løvemammaenes help service, which assists children and families with various functional variations, serious illnesses and diagnoses. They help over 1,000 families, and are constantly experiencing an increase in the number of inquiries. This is what adviser Rebecca Holmaas says. She says Erlend’s situation is another sign that public agencies do not have good enough offers or resources. Counselor in the Løvemammaenes help service, Rebekka Holmaas has assisted Erlend in recent months. Photo: Photographer CF Wesenberg – They fail in many areas. When a family complains to a municipality, it often takes a long time. If the case ends up with the State Administrator, it takes even longer. They have no absolute deadlines for dealing with cases, so the result is a weakened legal certainty. Then the help service takes on the job of assisting those who need help. The adviser says they have a great understanding that the municipalities are in pressured situations with many cases and few resources. She still expects the municipalities to listen to their residents. – In this case, Erlend has been offered a stay at an institution or nothing. They prey on two parents who no longer have a duty of care, as he is a young man. It is poor treatment of a family as a whole. An ace up his sleeve In the meantime, Erlend stays in bed. The sweater sleeves are folded up. The 22-year-old has several tattoos on both arms, but the one on his left forearm is very special. As a 16-year-old, Erlend got his first tattoo. There were four cards on his forearm, which remind him of the course of his illness. Photo: Oda Viken / news He took it when he was 16 years old. Before he got so bad. With mom’s approval, to take a small one. But he has marked the ink with four large cards. Like the ones you find in a card game. He chose the four best: Ace, Jack, Queen and King. – Dad always said that you have to play with the cards you’ve been dealt in life. Erlend is described by the family as extremely patient and grateful. – These are not the worst cards to have in your hand. It’s just frustrating that the others I was given aren’t that good. Photo: Oda Viken / news
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Foreign patience test – Nordland
