Over the last month of IV Zithromax treatment and IV Rocephin treatment, my energy has improved!!! Fatigue is my biggest challenge and I judge most of how I am feeling by my level of fatigue. Fatigue is not even the right word to describe how I feel. A doctor had to explain to me that the only word that the medical community has for the terrible uncomfortable feeling that I live with every day is fatigue. For the first year that I was sick, I knew that there was something terribly wrong with my body. I felt so weak that I could barely walk to the bathroom. The worst part of the symptom is that even when I lie in bed or on the couch, I still feel terrible. Rest does not necessarily help. It is hard to relax and rest when I feel so miserable. The way that I explain the feeling to other people is that it feels like a cross between the part of a hangover that makes you feel awful and having the flu. The fatigue is unique to this illness for me. I never experienced this weakness before I became ill. It is strange to think that a lot of people have never felt like I feel and therefore it is hard to explain how debilitating it is to live with. The devastating aspect is that it never seems to go away. I always have fatigue but my current drugs have been helping me to feel less of it. I am getting better!!! It feels so good to be able to say out loud that I actually do feel better.
My level of fatigue is directly correlated with my ability to participate in life. My fatigue symptoms dictate my behavior. My behavior ranges from staying in bed and literally being too weak to talk all the way to being able to ski or work on my computer for a few hours. During these past 10 years, I have had this whole range of levels of fatigue and it is hard for friends to understand how they can see me out to dinner one night and then I cannot go do something the next night. What people don't see is that I lay in bed and on the couch all day the day that I go out for the evening and then I have to recover from the exertion of spending the evening out. Sometimes it only takes me a day to recover and other times it can take me a week. It sounds crazy but it is very true!!!!!!! Just because you see me out, does not mean that my life is back to normal. I do have more energy but I am still far from being able to work, which I desperately want to do. Sometimes I feel slightly crazy for doing what I do with so little energy. I flew to
I know that my energy has increased because I drive my car almost every day, I enjoy talking to strangers for the first time in years, I read while I am at the infusion center instead of sleeping or watching DVDs, I am entertaining the idea of a career in nursing, and I am much less interested in watching TV. I find it boring but I still do it to distract myself while I rest. Last week, I even felt bored for the first time in ten years!!! I embraced the feeling of boredom. It isn't that I don't have plenty of tasks to accomplish and list items to cross off, but I felt as if I wanted to learn and to do something new that day. When I am just trying to cope and get through the day, then I cannot think about learning new skills or ideas. It is almost as if I have a few different personalities based on my energy level. I feel my healthy personality shinning through. I have always been the same person with the same attitude but now I am able to let people see it through my interactions. From my voice to my smile, I feel the energy=) I am thankful for these "good" days!
