12:00 pm - 2:00 pm: watched TV with husband (too tired to do anything else)
2:00 pm: took a nap
5:30 pm: woke up & ate dinner
Evening: work on blog, balance checkbook, hang out at home with husband
Today was not an unusual day for me. In fact, this is a normal schedule for a Saturday or Sunday.
During weekdays I have to force my body to stay up all day because I work full time. Though I try to avoid caffeine as a general rule, I will drink coffee or soda if I need added assistance in staying awake and staying functional. The result is that I feel like I'm a walking zombie by the end of the day. The funny thing is that I tend to have a smile throughout the workday because I enjoy what I do. At the same time, however, the smile hides how I feel physically.
By the time I get home from work I don't have the energy to do anything other than sit around and watch TV or read. Sometimes even reading is too difficult. Trying to have a conversation with anyone including my husband can be too exhausting to attempt. Phone calls are definitely out of the question. Pushing myself so hard all the time takes a toll. It is not unusual for me to have a sore throat.
When the weekend rolls around, my body is in full rebellion mode. It is angry with me for not allowing it to sleep all it wanted during the week. I cave in to its demands and let it control my weekend. There are many weekends that I don't leave the house because I've pretty much slept through it. My husband will usually do the shopping and any other errands that need to be done. Only my husband sees my daily struggle. It is the weekend version of myself that my family, friends, and colleagues do not see.
This is my double life.
Because weekends are for sleeping, my husband and I do not often go out. We don't go to museums or for walks in the park; we don't play sports or go to the gym together. Most of the time we stay in and watch TV or movies (Netflix is a great invention) because that's all I have the energy for. We rarely get together with friends or family.
I am sleeping through life.
Why am I such a big advocate for research about CFS/CFIDS? I need a cure. Fast. I've already missed out on too much.