The Lupus Chronicles Plus: A SLE Patient in Paris, France

11.17.2005

A SLE Patient in Paris, France

I guess more than 12 years ago when I was still first hospitalized, nobody would've thought I'd go far after. And when I mean far, I meant other countries. I even thought the same when I got re-admitted again for a re-activation of my SLE just May this year. I've been to Singapore, Thailand, and now . . . . France.& Who would've guessed? I didn't. I guess I'm just blessed.

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Living with SLE

SLE is not understood well enough to be prevented, but, when the disease develops, quality of life can be improved through flare prevention. The warning signs of an impending flare include increased fatigue, pain, rash, fever, abdominal discomfort, headache, and dizziness. Early recognition of warning signs and good communication with a doctor can help individuals remain active, experience less pain, and reduce medical visits.

Avoiding sunlight is the primary change to the lifestyle of SLE sufferers, as sunlight is known to exacerbate the disease. Drugs unrelated to SLE should be prescribed only when known not to exacerbate the disease. Occupational exposure to silica, pesticides and mercury can also make the disease worsen.

"Lifestyle and home remedies" by Mayo Clinic staff

Eat a healthy diet. A healthy diet emphasizes fruits, vegetables and whole grains. Sometimes you may have dietary restrictions, especially if you have high blood pressure, kidney damage or gastrointestinal problems. And although no specific foods have been shown to cause or worsen lupus, it's best to avoid any food that seems to make your symptoms worse.
Don't smoke. Smoking increases your risk of cardiovascular disease and can worsen the effects of lupus on your heart and blood vessels.
Get regular exercise. Exercise can help you recover from a flare, reduce your risk of heart attack, help fight depression and promote general well-being. Exercise as much as your body allows — aim for 30 total minutes of activity most days of the week, which can be divided up throughout the day. You'll likely feel fatigued and not up to exercising sometimes, and that's OK. Rest when you need to. Time outdoor activities so that you avoid the sun when it's most intense, and if you're having a flare, stay out of the sun entirely.
Be sun smart. Because ultraviolet light can trigger a flare, wear protective clothing, such as a hat, long-sleeved shirt and long pants, and use sunscreens with a sun protection factor (SPF) of at least 15 every time you go outside, even if it's just a quick trip to the mailbox. Be sure that your ears, scalp and the backs of your hands are protected. Avoid tanning beds and stay out of the sun entirely when it's strongest, from 10 a.m. to 4 p.m. if possible. Because fluorescent and halogen lights also can emit ultraviolet (UV) rays and thus aggravate lupus, you may need to wear sunscreen and protective clothing indoors or use plastic devices that block UV emissions from indoor lights.
Get adequate rest. People with lupus often experience persistent fatigue that's different from normal tiredness and that isn't necessarily relieved by rest. For that reason, it can be hard to judge when you need to slow down. Get plenty of sleep a night and naps or breaks during the day as needed. Friends and family members need to understand and respect your need for rest.