When Stine’s daughter was at the sickest, she could not walk to the toilet alone. The mother juggled her job with sole responsibility for her ill daughter, and became increasingly tired.
By Cecilie Skjerdal, journalist. Translated by The ME Parents
Norwegian original in KK
– For a long period she did not tolerate daylight. We had the blinds shut for about two years.
Eight years old, Stine Aasheim’s daughter became ill. Often she was too ill to go to school or play with friends. It hurt to be touched. She was so dizzy that she needed assistance when she walked.
Sometimes she lacked the strength to say more than two words in a row. Movements within her sight, sounds or odors could cause intense headaches and make the symptoms worse.
On better days, Stine drove her to school, but often had to pick her up before the day was over. She slept at her mother’s office. After three such years they were worn out, and both broke into tears at the doctor’s office.
– The doctor responded by saying that they would have to use anti depressive medicine for the rest of their lives. But we were not depressed. The girl was sick and we did not understand what it was, says Stine.
After changing GP, a medical investigation was initiated. Pediatrician and neurologist diagnosed the girl with Myalgic Encephalopathy (ME). The energetic Stine, once a salsa teacher, amateur theater player and arranger of opera balls, who used to be a prime engine for projects both at work and private, had to put everything on hold. Now she had to focus on the most important: her daughter and her job.
Constantly Stine had a bad conscience. Absence from work had consequences for colleagues. And when she was at the office, she thought about the girl who was home alone.
– «Twice she lay on the floor when I got home, unable to get up by herself.”
Stine did not know what help could be had and wasn’t able to figure it out. All the energy was spent in making everyday life go on. After long days of concern, she went for walks and cried. She read everything she came across about ME. The research was spread – doctors disagreed with each other, and there was no treatment.
She joined a network of ME-moms, which could provide support and help. Everyone was tired. Frustrated over doctors being sceptical of the diagnosis. Economically exposed. Many had high education, but their career was put on hold. Life was on hold. For such is life with a child with ME.
Daily life is influenzed by the overall grief of what could have been, and the struggle against a system that mistrusts them. It’s an eternal «fingers-crossed» project: anniversaries are planned, but when the day comes, the child lies in the dark in its room. Holidays are booked in a hopeful moment, but must be cancelled.
– “Occasionally we can go visit someone. If her condition gets bad, it’s easier to go home than suddenly chasing out guests you’ve invited.
She started blogging about everyday life with a child with ME
Together with other ME mothers, Stine created a blog. She needed to express herself and wanted to give hope and support to children with ME and their parents.
My wishes for you are skinned knees and getting sunburnt. Exam stress and a broken heart. Not because I wish you harm, but because I with all my heart wish for you to live through every part of the life kids should live. My beloved chid. I love you higher than heaven and from here to eternity. I hate ME, Stine wrote in a blog. You may read full text here! https://fryvil.com/2014/07/26/my-beloved-child/
Today her daughter is 18 years old. During the last year they have seen some improvement. But ten years of having a sick child have left their traces in Stine: now she is on sick leave. Fortunately, during these years, she has learned to live in the moment and find pleasure in the little things: walks with the dog, beautiful scenery, a few minutes at a coffee shop. She tries to meet friends a couple of times a month.
“I create small quality-moments. It’s nice to talk to someone from what I call ‘the healthy world’, she laughs. Stine says humor is what keeps her going. Gallows humour. “That’s how I really am, I’ve always used humor. Something bad and sad I give a humorous twist, then I move the focus a bit. It is so lovely to smile!”
She nurtures faith in better times and keeps an eye on the research. Recently, the government gave NOK 30 million for research on ME. “There is reason for hope!”
The article is followed by a comment by Trude Schei, ass. General Secretary of the Norwegian ME Assosiation:
«Many parents of children with ME are being threatened with BARNEVERN by school or health care if they do not push their children to a higher level of activity. Such threats are perceived as a huge burden. They also have big challenges in getting the right schooling or the right help from the municipality. Many ME patients are also exposed to therapies that aggravate their condition. What is for these parents, however, is to see the children’s lives being put on hold – that they miss out on what other children take for granted – school, cinema, an evening with friends, leisure activities. It’s immensely painful to see your child suffer. Many parents feel isolated and lonely.»