I've got SLE and RA ~ the biggest downside is on the days when I'm not particularly tired, I'm just as likely to ache so much that getting much of anything done is difficult. I'm not on any meds (allergic to the NSAIDS in general) and that doesn't help either.
My boys are grown and out on their own now, and my DH is truly good about my down days. In some ways life is easier now, but in others it is harder. I have far more animals now than I ever had kids, and they need to be fed, watered, and cared for regardless of how I feel. I've got a large garden, and we're building a home.
You do what you can and learn to set priorities. For me, it also helps to stay (always) slightly angry at the diseases. Being angry at them keeps me focused on keeping MY life rather than letting them rob me of it.
at 8:51 PM on Jul. 30, 2010