A Moment of Understanding
Let me start by saying that I know I am very lucky to have an incredibly supportive and understanding husband who has never offered me anything but love and concern. I am also very lucky because although I have Lupus, Sjogren's, APS and Raynaud's, I am NOT yet (and hopefully not EVER) sick enough to be hospitalized or need meds beyond prescription vitamin D, Plaquenil, and occasional migraine meds.
However - even though I fall into the "mild to moderate" end of things, a couple of years ago I had a 12-18-month flare (I guess that's what it was) that was pretty debilitating - fatigue bordering on narcolepsy, whole-body pain, one toe turned black and almost split open, severe S-I joint problems, and some very scary neuro symptoms (some of which mimicked early-onset Alzheimer's), and recently I lost some sight in one eye due to the APS. This was all pre-diagnosis.
ANYWAY - my Dear Husband ("DH" hereafter) is obnoxiously healthy - always has lots of energy. But about a month ago, he came down with a flu. He seldom gets even 10% as sick as anybody else, so he went ahead and ran the half-marathon he was signed up for, despite feeling "a little off" (go ahead and insert headsmack and eye-roll here...I certainly did, L O L...)
Because of the extra stress on his body from the race, he ended up being pretty sick, and for the last month has been fighting bacterial bronchitis/pneumonia. He's not been sick enough to stay home, but trying to keep powering through "normal life" while constantly feeling out-of-breath, achy, mildly feverish, and exhausted, no matter how much he slept.
So we were talking in the car the other day as we drove someplace, and as he talked about stuff, I said (not in a mean way) "Hey - it's like we switched lives for a while: I am starting to feel better..." (Plaquenil? Vitamins? Anti-inflammatories? Who knows....) "...and you are feeling like I usually do. It sucks, doesn't it? Imagine feeling like that for almost two years, and nobody knowing what was going on..."
He paused for a while and then it was like he really "got it" (not that he ever doubted me before). I think it was a really useful experience for both of us.
Anyway - DH is on the mend, and hopefully so am I. But at least I feel like we've got this little bit of "shared experience" in the bank for the bad times, when the Lupus/Sjogren's/etc raises its ugly head and bites me in the butt, as I'm sure it's bound to do some time.
The best I can do to describe it to people is to say "it feels like having the flu...ALL THE TIME - minus the sneezing and coughing." But sometimes people have to be close to that experience to really "get it".
I wish nobody ever had to be sick at all.