If you are not familiar with Spoon Theory from But You Don’t Look Sick? then I will summarize it for you. Basically, someone with a chronic illness like lupus has to make choices every day about how to make the best use of what energy they have. If they use more energy than they have available, they will probably pay for it the next day.

The problem for us as a family is trying maintain a balance between coping with the effects of lupus and having a normal life. This morning my wife took the kids to the zoo with a friend. This is a totally normal and fun thing for a mom to do for her children, but when the mom has lupus, it’s a major undertaking just because of the sensitivity to sunlight. Considering that taking a group of kids to the zoo would wear out a regular person, you can understand how it totally exhausting it was for someone with lupus.

My question is how do people manage this balance between the acceptance of the illness, and the day-to-day business of life?

My wife often has trouble sleeping. It seems like she either can’t stay awake or she can’t go to sleep, and this cycles back and forth every few weeks. Once she goes to sleep, she can stay asleep, but it’s the getting to sleep part that’s often difficult. I suspect that the insomnia is related to certain medications, but it may also be related to the illness itself. Like many lupus sufferers, my wife has tried a variety of sleep aids, including Lunesta and Ambien; however, they tend to work well for a couple of weeks and then lose their effectiveness. (more…)