Journal of IiMER physiotherapy, the result being none other than getting worse. Falling asleep in the car after therapy was no exception; I was exhausted and needed rest. You do not need to worry, I was not the driver! Once I rode my bike and was not able to lift my legs from the pedals approaching a red light. I had fallen down with the bike before, for the same reason. The light turned green at the last minute. I do not want to know what would have happened otherwise. After the red light incident I stopped riding my bike because it became too dangerous. After eight years I was diagnosed. Unfortunately, this did not mean getting access to appropriate care, treatment, necessary benefits, etc. The lack of suitable care and available treatment leaves much room for a lot of question rather than answers. And the commonly used name, chronic fatigue syndrome, maintains the enormous burden of stigma attached Myalgic Encephalomyelitis and the psychiatric opinion of it. Having ME effects every part of my daily life. It starts in the morning when I have to get out of bed, when it feels like I have been run over by a truck, to going to bed when I am not able to fall asleep right away and lie awake for hours. I feel it when I take a shower and I can hardly lift my arms to wash my hair. Or when I am too tired to stand under the shower and need a small stool to sit on or on days when it is really difficult and I ask one of my daughters to help me. On days when I do not have to leave the house I save energy by just walking around in my pyjama, taking no shower and not combing my hair. However, this is something people do not see when they see me. While getting dressed I use a chair, always! Because I cannot stand for a long time. When I stand up straight for a long time I get dizzy, nauseous, weak, everything gets black before my eyes and it feels like I am going to faint. This is why I usually sit, hang or do something in between. During the day the pain varies according to the things I do. When I do too much physical or mental www.investinme.org ‘work’ the pain is worse and I may get a fever. When I go to sleep the following nights, it feels like I have a very sever flu and my whole body aches and shivers. Migraines are my constant companion as a result of stepping over my limits. But that limit can be a scent that is too strong, like my daughter’s perfume or a light that is too bright like the sun. I used to be better but after every severe migraine attack I never returned to my old level of functioning. My digestive problems get worse the more I get tired. The fact that my husband cooks is for two reasons. I cannot manage three pots and pans anymore, and when I do cook I am too tired to eat afterwards. The hardest symptom for me to deal with is the cognitive impairment. This makes me feel like I am losing my intellectual abilities. The work I do takes an enormous amount of time, I have trouble concentrating, organising my files, my orientation is all over the place, etc. Due to my disabilities I am hardly capable of doing housework. The tasks I do take weeks, and some things are just impossible to do. Like I said, my husband usually cooks, does the dishes, the ironing, some of the cleaning and sees to it that I get everywhere I need to be. But, due to financial difficulties, we are not able to afford the necessary help, such as cooking and cleaning, transportation, care, etc. Most of the supportive treatments and food supplements prescribed to me are not reimbursed. We are adjusting our home ourselves without reimbursed benefits. I have been put on retirement due to my illness but I do not have any benefits that come with being retired. ME also has consequences for my family, my husband and children. I cannot do the things I would like to do with my children because they are not physically possible. I once got angry with my husband because the bus stopped too far from the parking lot and I could not Page 57 of 82
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