Humans of ME/CFS

I got sick when I was very little. So, I do not remember what it is like to be healthy. People will ask me what I was like before, but I cannot answer them. I tell them what my life is like now. That may not seem like much, but for years we struggled for an explanation of why I was this way. But, I was too young to tell the doctors what I was feeling. I was 10 when they finally diagnosed me with ME/CFS. I was so glad to finally have a diagnosis, to finally know I am not making things up, and that the symptoms are real. Now that I am older, I can better explain how I feel; but, I cannot find the words to describe the amount of pain I am in and how tired I am in all the time. I have been told it is often compared to the flu. I do not know if it is true. Growing up, school was a huge challenge. I had to work so hard just to stay awake and keep sitting up that I did not have much energy left to listen to the teacher, do my assignments, and actually learn. I only made it through because my family helped a lot. I never thought I would make it to college, but somehow I did. I had a lot of support from my friends and teachers and that is the only reason I made it to graduation. I would have many days where I would lay on the floor in class because sitting up was too painful. I made sure I had all my classes in the afternoon so I could go to bed early and sleep late. In the beginning, my friends would get scared because they saw the amount of pain I was in and they did not think it was safe. They stuck with me though and did everything they could to help. They learned how to help make sure I got my medicine, how to handle a migraine, what to do when I was dizzy, and so much more. As much as I appreciated all the help, I still wanted independence. Living with no hope of a minute free of pain and fatigue is depressing enough. But, knowing I would always need help to live left me angry and miserable. I now have a service dog which is a huge step for independence. To help with the feeling of uselessness, I do some volunteer jobs. Life may not be miserable with great friends, family, and a wonderful service dog, but it is still trying.