The Many Facets...
As my Mom wrote before, everything in my family changed. One experience that I fully remember is when we went on a vacation to Disneyland almost a year after I got sick. Several of my siblings had gotten mono also, so there was major adjustments to the vacation. My parents rented a wheelchair for me, so that I could save my energy by not walking everywhere inside the park. We would go out in the morning, and then we would go back to our hotel for nap time (the non-sick siblings went back to the park with a parent) and then we would regroup again for the evening. I felt really strange riding in a wheelchair when I also had siblings who were sick, and the many strange looks other people gave me when I would get out of the wheelchair to get on rides-- I felt very exposed and felt like I was being blamed by others who couldn't see anything wrong with me.
My family belongs to a church, and this aspect of my life changed also. I did the best in the mornings, with a nap in the afternoon so that I could be functional for the evenings. Having a church meeting starting at 1pm in the afternoon threw all of the schedule off. As a result, my Dad would take me to the 9am meeting with another congregation who I didn't really know. I went to this congregation for almost a year, because it was the only way for me to make it to church and not have problems the rest of the week. I found a certain peace and hope from going to church- rather than seeing all of my problems or limitations and giving up, church gave me hope that doctors or medicine could not give me. I had a really hard time thinking about how PERMANENT chronic fatigue was, how it would almost always be with me. I wanted to be normal-- I wanted the "normal" teenager experiences-- rather than taking naps like a 2 year old. My church is a Christian denomination, and I believe that Jesus Christ not only took my sins, but I also believe with all my heart that he also took my weaknesses, my illnesses, my pain, and that because He also experienced them, I am not alone. This belief helped me so much when I felt so isolated and alone to not give up, to keep trying, to keep falling down when I tried so hard. I didn't feel so alone when no one else could understand how I was feeling, either physically or emotionally.
Another part of the chronic fatigue experience was the mental health issues that can come from being physically sick so long and also the lack of hope of getting better.When I was a teenager, I had to take the one-day-at-a-time view, and that helped. Still sometimes I didn't want to do anything, because to me, what good would it do? I found a few ways that helped me a lot-- including soccer (I loved it), doing activities that I felt that I could succeed at, and having a best friend who was there for me the whole way. This best friend and I have known each other our entire lives, and we have helped each other through a lot. She made me feel like I hadn't lost myself, and she told me many times how proud she was of me, which made me feel like I was doing something right. It is something that I still have to be very aware of. It is something that my doctor checks in regularly with me, because it is such a struggle to continue with life while feeling to a certain degree that this is not the life I am "supposed" to have. I have had certain times when I have looked back to before I got sick, and it is scary because now I have a hard time remembering what it was like. I try my best to not only understand and track what my physical body needs, but also paying attention to my emotions (happy, sad, depressed, angry, optimistic, hopeless, tired, etc.) and adjusting what I do accordingly. I don't know if I will need medication but I have it as an option to help me if I need it.