I've been unemployed since my diagnosis 7 months ago. I've been too ill and am still in limbo concerning my immediate health, so there's no timeline for me to look for to when I might be able to go back to work.
I'm 35 and have worked most of my life. I always thought that being unemployed sounded WONDERFUL, but it turns out it's more like being forced to eat ONLY your favorite food for months, eventually making it something you fiercely loathe and despise.
The days are all the same, except when I'm hospitalized, and even then, as that's been a regular occurrence (8 extended hospital stays in those 7 months) to where that doesn't break the boredom, either.
What in the world do people do to combat boredom? I haven't enough stable energy to volunteer, no money to start expensive hobbies like painting or photography. There are days when I can't even focus long enough for a video game (and Mass Effect 4 is coming out! I REALLY WANT TO BE ABLE TO PLAY THAT!).
I'd sleep, but that itself is also volatile and unpredictable. I can't predictably schedule it, which makes working and hobbies even more difficult.
I'm 35 and feel like the mantra I've heard every retired person say: "Now what???"
So, fellow lupus folks, what do you do to fill the hours when you're too tired to do anything, but too awake to go back to sleep? What do you do when you can't work?