On March 27, 2017, my life suddenly changed. This is the day I was sick.
At first it was not dangerous, only a common virus. But months passed, and instead of recovering, it got worse. At the time I was 14, now I’m 19. There is no cure.
I was bedridden after three weeks. Now I lie in bed all day, and I haven’t been on my feet in several years. My room is completely dark and quiet, and I have to be alone almost all day. It’s been over two years since I’ve been able to be with my sister, my close friends, and my family. I get food through a tube in my nose because I don’t have enough energy to chew my food.
Can only handle a few sentences
There is a lot I want to talk about with family and friends, and ask them about, but I can only manage a few sentences. Before I could text my friends and watch series and music live, it was now very tiring.
I have many symptoms that indicate that my body is not healthy, I suffer from brain fog, I often wake up at night, I have ringing in the ears and become very sensitive to sound from outside, I have pain in the head, muscles and joints. On bad days it is difficult to speak in sentences, sometimes I can only communicate with keywords. If there is a lot of sensory impression or sensory activity at once, all symptoms become stronger in the next few days.
I have the best parents and they help me with everything. Since I cannot speak to the doctors and other assistants myself, they speak for me. They tell me about the latest research on ME, and it gives me strong hope of recovery. I can try a drug that might make me better.
I am writing this because I am one of the many millions living with this disease, and I think people should know about us
– Eileen Lear Salvesen
People should know about us
Wondering what I do when I’m lying here? Now I think about how difficult it is to be chronically ill in Ukraine and elsewhere in the world. I can think about good memories for hours, have long lists of what I’m grateful for, and dream about what I want to do when I get better.
I am writing this because I am one of the many millions living with this disease, and I think people should know about us.
(Eileen began writing this text in the winter of 2021, and sought help from her parents to finish writing because she did not have the energy to complete herself. She had read through everything, and wanted to publish the text on the day I had been sick for five years. The text was first published on Eline’s Facebook page.)
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