How to say “Take it easy”

One of the things that, as a lupus spouse, I find myself having to do almost daily is telling my wife to take it easy. It appears to me that once she gets going in the morning, which is a very difficult time for her, she tries to do as much as she can before she falls apart and runs out of energy.

It’s like she’s trying to beat her illness in a sprint. The real problem with this is that she never wins this race, because the race never ends. Her illness never stops. Lupus doesn’t suddenly give up and say, “Okay, you win.”

What happens more often than not is that she will continue until she ends up getting so sick that she has to spend time in bed (if we’re lucky) and the hospital (if we’re not).

I think she needs to spread things out a bit more so that she’s not so worn down. She’s pretty sick right now, and I still have to argue with her to rest.

Does anyone else have this experience?

Spoon Theory in Action

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?