I remember thinking, the day I drove back home from the hospital, carrying a piece of paper with the diagnosis ME written on it, driving along with my boy next to me in the car seat. He was not able to sit up straight, he was whimpering in pain and discomfort with every slight bump, light, noise, an appearance more like a dying person than a living breathing teenager … – Are they kidding me, I thought … – they cannot seriously mean this … – nothing they can do … – graded exercise therapy … – what are they thinking??
The boy is sick, he needs nursing and medical attention, and everybody should be able to see this just by looking at him! Do they really mean that we need to take full responsibility to care for him at home now? All by ourselves?
They saw it when they started the examination. I remember the hidden glances between them in the hospital when we arrived, all the unspoken words while examining the boy. The relief I noticed in their body language and in their eyes when they did not find a brain tumor or a terminal disease. The way they told us the good news.
We were prepared for the worst, my husband and I, even though it was an impossible thought that we did not want to relate to. A tremendous anxiety, what would be the result of the examinations they did in the hospital. We had already lost so much of our boy. He had lost weight, was pale, black circles under his eyes, he didn’t know what day of the week it was, if it was day or night, summer or winter … He told us it hurt when we touched him, he just wanted to lay there in peace … quiet … in the dark.
Home at last … On the stairs our support team was ready: Dad was waiting to take care of his boy and me.
We helped each other carrying our son back upstairs to his dark, quiet room. The only place our boy wanted to be when he was severely ill with ME.
This was the day I became an ME mum.