If you or someone you know has been diagnosed with lupus, there are daily challenges which will present themselves. Learning to adjust to the disease and how it will affect your daily life is an important step.
Recognize limitations
Learn to listen to your body and identify its needs. Don’t ignore symptoms as they appear; address them immediately. Recognize that you may not be able to do some of the things you used to, and modify your behavior to adjust to the change.
Plan Accordingly
You may not be able to do everything you used to, but that doesn’t mean you can’t live life to the fullest. Maybe you cannot go on long vacations, but certainly you can still take a few days off and indulge in a restful vacation rather than something very active. Try going to a spa rather than rock climbing.
Bring all Medications When Traveling
If you are traveling for any length of time, bring extra medication with you just in case. Be sure to always carry your medical information (prescription and dosage, doctor contact info, emergency numbers, etc). This way, if something ever happens to your medication you’ll be able to get more.
Be Flexible
Perhaps most importantly, you’ll need to be flexible and adaptable. There will be times where your lupus will interfere in ways you don’t want it to. It may ruin carefully made plans or special occasions, but there is little you can do to control the timing of flares. The only thing you can do is accept the occasional flares as part of your life, and move on.
Determine Triggers
You may already have some idea of what triggers your lupus flares, but you’ll want to pay special attention to circumstances that seem likely to predict an event. Jot these down in a notebook when they occur to see if there’s a predictable pattern. Be sure to tell your doctor anything you’se noticed.
Determine Warning Signs
Many people experience warning signs of a lupus flare, which may include increased fatigue, headache, dizziness, rashes, stiffness, pain or fever. You may experience these symptoms or others, or none at all. Everyone with lupus is different. Again, track these warning signs and see if you can find a pattern. If caught early enough, you may be able to reduce the severity of the flare.
Preventive Care
Take very good care of your physical and mental health. Keep your body in the best shape you can in order to minimize the risk of developing more serious complications. Preventing further conditions will be easier than treating them.
Coping Skills
You’ll find you need to develop good coping skills. Adjusting to lupus will take flexibility and patience more than anything. You may find it helpful to seek out a therapist who’s familiar with lupus and can give you support when you need it. A professional can educate your family, partner, friends or boss about your specific needs and condition. There are even support groups you can join either in person or online.
http://lupus.webmd.com/guide/lupus-living-managing
http://lupus.webmd.com/guide/psychosocial-aspects-lupus

I had a very precious cousin who died from lupus. Coping skills are mentioned here, but let me tell you – it was her family that helped my cousin live her life to the fullest. They virtually put their lives on hold to meet her needs. Her family will tell you they wouldn’t have had it any other way than to be there for her. Family support is the best self-care tip you could ever recommend or experience.
Thank you for that honest insight, Noelle.
I have just met a special person in my life knowing that she was diagnosed with lupus about six years ago. I am trying to gather information on how to enjoy our time together without worrying about something I ask her to do. I want her to be able to enjoy anything she wants, but I don’t know how far is to far. I don’t want to let her push herself to far and make herself feel bad. Any information or sites would be greatly appreciated. Thank you.
Hi Aaron,
It’s such a wonderful thing that you’re trying to learn about this special person’s condition. There is a wealth of information out there for you!
Try these web sites for more info:
http://www.lupus.org/webmodules/webarticlesnet/templates/new_magazineback.aspx?articleid=2490&zoneid=67
http://tfj.sagepub.com/cgi/content/abstract/7/1/29
http://www.thelupussite.com/forum/forumdisplay.php?f=51
These are just a few of the many sites/blogs that address living with lupus.
And of course, sitting down together and having a good conversation about lupus and how it affects people’s lives is always a good idea.
All the best!