My wife has been having a lot of problems lately remembering things and has been acting a little odd. This isn’t a new symptom of her lupus, but it is one that tends to vary in severity. Sometimes people refer to this as lupus fog, and it can also be related to fibromyalgia, but I feel like what has been happening lately is a bit more severe.

I found this on the Lupus International website:

NEUROCOGNITIVE DYSFUNCTION is also a common and overlooked clinical feature of lupus estimated to occur in up to 80% of affected individuals. The diversity of cognitive impairments parallels the considerable variability of the disease process. Deficits in learning and/or memory, reasoning, verbal fluency, motor function, basic attention, and information processing speed are the most consistently described.

This is precisely the kind of things my wife’s been dealing with for years, although never all of them at once. (more…)

My wife asks me a lot of questions. She usually asks me first thing in the morning why she is so sore or why she feels so terrible. During the day, she will ask me at least once why she feels so tired or why she has trouble staying awake, and early in the evening she will start asking why her back and her legs hurt so much. When we go to bed, she usually asks a sort of compilation question of sorts, wondering what is wrong with her.

I used to say, “Well, you’ve got lupus.” However, that is not what she wants to hear.

She knows she has lupus. She knows as well as I do how lupus works. She knows she has fibromyalgia. She knows she has rheumatoid arthritis. She knows.

I have a hard time with these questions. I know she knows, so the trick is to figure out at that moment, what does she really want? Sometimes, she really does want to know why something is hurting that doesn’t usually hurt. The problem is, of course, that I am not very good at figuring this stuff out.

More often than not, I make the mistake of just giving a straight answer. Your back hurts because you moved furniture, or you’re tired because you didn’t eat anything today other than an apple and some toast. Even worse, I usually add something like, “…even though I told you not to” or “in spite of the fact that I reminded you.” I know… I’m working on it.

Sometimes she just wants to know that things will get better, or that the pain is temporary. I can certainly tell her that, even though I don’t know if it’s true. I don’t know that it’s not true, so I feel like I’m still being truthful.

The real problem for me is that I want to be able to give her an answer, you know? I want to be able to explain what is really happening, because that is the kind of answer I would want. But my wife is not like me. I am all wires and numbers and she is made up almost entirely of emotions and intuition. My very factual answers do little to make her feel better. Instead of reminding her about how connective tissue disorders work, I sometimes think it would make her feel better if I said, “Well, it’s a full moon… that’s why.”