Humans of ME/CFS
My life before ME/CFS: I loved being independent, active, productive, efficient, effective, and a contributing member of society. I enjoyed hanging out with friends and all kinds of people, my job, working with children, snowboarding, road trips, hiking, going to shows, eating, dancing and discovering everything the world had to offer me. I loved being intelligent, clean, thoughtful, kind and helpful. I felt amazing, happy, loved and healthy.
My 40th birthday was just around the corner when I get a mild flu. (Other symptoms occurred previously, but I dismissed them.) That was the beginning. Five years after getting ME/CFS: Everything is challenging. Every day is a challenge. I am dependent and exhausted. It is lonely. It is very scary. The illness is inconsistent from day to day. There is no accurate planning of my days.
My body does things that no one understands. My brain is not right. I get dizziness, light-headedness, vertigo, motion sickness, sound sensitivity, light sensitivity, swishing, and disorientation. I never know what I am going to get; it is always an unpleasant surprise. Going out of the house is difficult. Taking a shower is strenuous. Driving on the freeways is no longer an option. Walking can take complete concentration. Thinking can be taxing. Standing in line is impossible. Socializing is energizing and then so draining. Too often socializing is not even a possibility. Every muscle becomes fatigued. There are so many muscles in the body. Swollen glands exist and itch. Now, I am allergic to so many foods, so eating is not as fun at all. I never want to go to sleep at night, because then I have to wake up and start all over again. I never know when I will have a spell.
No one knows the cause. There is no solution. I am a burden. Every day I try to hide my shame of being sick. It is so hard. Everything is so hard. I am eternally grateful for my husband and my daughter. They give me love and immense support. They are the reason I continue to try to do something each day. I am grateful for the friends that support me and stand by me. I am grateful for music. I am grateful for books. I am grateful that I do not live in North Korea. I am grateful that I still have a job (although my position had to change) and they accept my FMLA. I am grateful for beautiful things. I am grateful that I still have a sense of humor. I try to always continue to be grateful. That can be hard too. When I make a wish, I always wish to be healthy. (Boo! It is not working-yet.) With continued research and the help of the National Institutes of Health, hopefully I (along with others like me) can be normal again.