Check out "The Lupus Book" by Dr Daniel Wallace. It is one of the main "go-to" books for talking about
Lupus and what life will be like. Also take a look at www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
- it helps explain Lupus Fatigue to family & friends.
Lupus is totally different for each individual. Sometimes it progresses rapidly to organ involvement, sometimes it is "mild" or "quiet" for a while (the word "remission" isn't really used), sometimes it is lots of little things conspiring to make life complicated.
My Lupus is much less intrusive than it was at diagnosis 10 years ago. I find that the same basic things that we're supposed to do already help control it - we seem to be more fragile with our reserve resources than other people. Those oh-so-basic things become *big* players --- good healthy food at regular intervals, deep healthy restorative sleep, stress avoidance, regular mild to moderate exercise (as tolerated). Then if I follow my Dr's orders, and plan to actually do only about
1/2 or 1/3'd of what I think I can do....I can have fairly normal days.
Of course, that is me....as they say "your mileage may vary". Listen carefully to your body, you will learn how to work with it to have the best experience you can have. Live each day fully and try not to worry about
the future - it will come as it comes with or without you spending time & energy on it.
Hang in there, feel free to ask any specific questions you want.
Lynnwood, Lupus & Sjogren's ModeratorDIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde