But she was better now. Spring and warmth was good for her. A little better is so infinitely better than the dark hell of pain that we miraculously forget once she can sit up straight and watch some TV, or sit on the terrace for a few minutes, or even have a short visit from her grandparents, who she sees far too seldom. Maybe once a year.
I rarely notice everything I do for her all day and all night. But yesterday I had to go away for a few hours. Some appointments you just cannot cancel. Food was prepared and water bottles were easily accessible on the coffee table.
I returned home, but wasn’t greeted by the gentle and happy «hello» I usually hear when I come home from a short errand to the shop. It was quiet. She lay crumpled on the couch, the water bottle was emptied. She was unable to speak. At first she mimed, then only whispered. Completely red in her face and white around the mouth. This is all too familiar. But she has not been this ill for a long time? I didn’t understand anything at all. Just because I was gone a few hours? Please, no! This can not be true!
She tells me she cannot cope on her own, even though we believed she was strong enough now to be alone for a few hours. In fact, she always looks forward to having a moment on her own. After all, she is almost 19, and every morning she wakes up hoping this day will be a good one. But it had been too exhausting to get to the toilet. The consequence of having to get there and back, alone, without help, is that she is now so ill and weak that she simply does not have the strength to neither drink, or eat. She sweats excessively, and is completely exhausted. She has not been able to lift her water bottles, or to open them. The glasses in front of her were too heavy.
She has not had the strength to wait for food to be heated. Or even to chew her sandwiches. She wasn’t able to swallow the slices of an apple, and was afraid she would choke on them, as that happened with the first slice. And had she even remembered to take her LDN (low-dose naltrexone) and migraine medication?
I was away for just a few hours, and now we’re back in that stupid dark place. We had begun to plan her 19th birthday, which is approaching. Her grandparents wondered what her birthday wishes were. She replied; «Nothing». But I do know what she wants. They live far away, and maybe some day she will be able to visit them, and stay with them for a little while. And she does want to try Rituximab. But she doesn’t dare to tell them.
She has applied for work assessment allowance now. But she dreams of becoming a doctor, and a researcher. This is not how life was supposed to be. Right now I had to carry her to the toilet again. I don’t understand how highly educated people don’t do more to help people like her, and everyone with ME!
At Easter, she sat outside, enjoying the sun for a few minutes. But as soon as the help is not there, she simply doesn’t manage! And she’s not the only one, this applies to many with ME. It’s a scandal and a complete disgrace!
Now I’ve fucking had it! It is high time to get together and demand more funding for biological research, as well as customized rehabilitation centers for young people and adults, both here in Norway and in countries with warmer climate; ME coordinators and ambulant teams for the most severely affected in all municipalities; and user-controlled personal assistance for anyone who needs it. Not to mention, that if a fast-track pathway is supposed to become the norm, then a fast-track pathway must be for ME exclusively – do NOT mix ME with other diseases.
WE NEED HELP NOW!
Written by an impatient and angry parent
Original in Norwegian