When I first found out my weird symptoms had a name-tag, I went into brave denial. It still helps, occasionally. "Oh, I don't feel sick enough to have that illness." After that, I got angry. I cried a lot. I wanted to hide in my bedroom, or to talk about my illness all the time, or demand that the doctor find a drug to fix me.
But my house, family, and job didn't go away. My gem of a husband said that he would adapt his life in whatever way necessary, but that we were still going to have fun together. I believed him. And I have learned some tricks that have kept me afloat. I'll start with the simple ones and go to the more difficult for those really bitter days.
1. Carry a lighter purse! You never realize until you get an 8 ouncer instead of a 10 pounder how much you've been lugging.
2. Shop and communicate by internet, if it's less tiring for you than phone conversations and shopping.
3. Prepare ahead for those days when you are "down." Have a frozen dinner you can throw in the oven. Better yet, have frozen pizza or pizza place phone numbers that your kids/spouse can call. (A freezer full is even better!)
4. Divest your life of any extra hobbies that don't give you real pleasure.
5. Nuture yourself spiritually. Realize there is life beyond your physical self. God becomes ever-present on those days when it seems unendurable. He is "near to the broken-hearted, and binds up their wounds."
6. Know when to call the doctor. Familiarize yourself and your family with the signs that lupus might be attacking your brain, lungs, or kidneys. Some symptoms are annoying; some are emergencies.
7. If you are overly tired--take a sick day before you end up really sick. Don't stay home and do laundry--stay home in bed. Watch a movie.
8. Make time for the people in your life who really need you. Ask them to put their emergencies on hold, though, when you are really not up to high-energy output. Call on trusted others to step in when necessary. My husband is now great at telling our kids (youngest, age 16) "let your mother rest, now. We can figure this out when I get home." He has learned this! On good days, I try to do things with the kids that don't involve me cooking and shopping all day.
9. Remember that no-one is healthy all the time. Ours is not the only illness or the most dire illness. Concentrate on taking your pills. Count the small victories. Today might be a stormy one, but you may have a cloudless sky tomorrow!
10. Be aware of substances that kick up allergies, such as cleansers or foods. This can irritate the lungs.
11. If skin problems due to lupus make you want to hide, try some all-concealing products. (This is one of my vanity griefs.) Cake it on artistically, and smile, smile, smile.