I just lost it with my DH and kids (boys, ages 9 and 5) because I am fed up with their not helping me as much as I need them to around the house. If this gets long, please forgive me.
I was dx three years ago, and you'd think that by now, DH especially, would understand that I'm not crying wolf, whining or being lazy when I need to take a rest. At the moment, I'm in a mild flare. I have sores in my mouth, a mild malar rash, the usual joint pain, and waves of that awful "lead bones" feeling of tiredness. I've also been battling nausea all day, and am trying to get over a cold I caught a few days ago.
I'm a writer, and I have a long-awaited book signing this Thursday night. It's a big community event, and I still have quite a lot of small details to finalize. I know that if I do not pace myself between now and then, it is going to be one miserable evening for me, and will take me days or weeks to get over not listening to my body.
Our finances are really tight, and we don't get paid again until this Friday. My parents took me and the boys out of town last week, so I came home last Friday to a MESSY house devoid of easy-to-fix groceries and no budget to go buy anything. So the last two days I've had to do some major cooking.
After church today, I made a big pot of homemade chicken and dumplings and some vegetables to go with. By the time it was ready, "lead bones" had hit me and I had to sit down. After dinner, I didn't have the energy to clean up...I'd barely even wanted to eat. So I zonked out in the recliner, telling DH that the lupus was flaring up and I had to rest. So, what does he do? Naps on the sofa while I'm down. Even though I'd asked, no, begged him and the kids to please clean the house today so that would be one less thing off my plate for this week.
I'm not saying no one else in this house deserves a rest. But I know that all three of them slept soundly last night (DH even commented earlier on how great he slept). I was up and down feeling awful. And the thing is, I don't even have this hugely high standard for cleanliness like some women I know. I can handle dust bunnies and a lived-in look. But I can't handle sloppy bathrooms and countertops overflowing with dishes from the sink, and floors that haven't been mopped in a month. And let's not even discuss the grass that hasn't been cut since what, maybe late May?
I've tried to articulate how much this hurts my feelings, how it makes me feel unvalued and disrespected. But they just don't get it. I imagine it is hard to live with someone with such an unpredictable disease. But for them to act like, "Well, Mom isn't doing anything, so why should I?"...it really hurts.
If you have any ideas for how to make a family understand that this isn't about me trying to get out of work, I'd love to hear them. Now my hands hurt from typing this vent so I guess I better go rest again. All the guys are outdoors, playing with the dogs...
Wife, writer, artist, mom to 2 wonderful boys
Lupus, arthritis, PCOS, mild depression
Now taking: plaquenil, limbrel, metformin XR, Zoloft, and the occasional percoset