Practical tips for living with lupus.
If you have any tips to add please email me.
Sun & UV
light
Many lupus patients experience problems after they have been exposed
to sunlight, or UV light (from fluorescent lights, halogen lights,
computer monitors).
Wear a high factor sunscreen (SPF 15+) whenever you are outside,
even if it is cloudy-the UV rays penetrate the clouds. Lupus patients
can get sunscreen on prescription (UK), just ask your doctor (Uvistat
Ultrablock is one of the best). Wear long sleeved clothing
& a hat when out in the sun, the most protective clothing is
made from fabrics that have a close weave. If you have problems
when using a monitor, buy a UV filter screen, & also wear sunscreen.
Casings & filters can be bought to cover UV lighting.
Avoid the sun when it's at it's strongest - 10am-3pm. Ultraviolet
rays reflected from snow, water, sand, glass & cement are more
intense.
Other tips
Find out what benefits you are entitled to, even if you're working
you may be able to get something. Read the benefits article.
Avoid alcohol! Alcohol can interact with anti-inflammatory drugs
& steroids to cause significant gastrointestinal problems such
as peptic ulcer or gastritis. It can also interact with sedatives
& narcotic painkillers to amplify their effects.
Don't smoke! Tobacco has negative effects on the cardiovascular
system, lung & stomach. Lupus patients are particularly prone
to vascular problems such as Raynaud's phenomena, which tobacco
can greatly exacerbate. Medication induced stomach problems are
also significantly worsened by tobacco use.
Avoid loneliness. Many people with lupus feel isolated & alone,
due to the nature of the illness - they can't go out because of
the pain & fatigue. Yet meeting other lupus sufferers can help
immensely, just being able to talk to someone who knows what you
are going through. Join your local lupus support group, you don't
have to go to every meeting, & you may meet someone who lives
nearby, who you can meet up with away from the group.
"My name is Pauline and I have been diagnosed with SLE for
13 years. After being plagued from the start with mouth ulcers and
constantly having to use adcortly in orabase to control them I have
recently discovered that taking 1000mg of L-Lysine and using a toothpaste
that is Sodium Lauryl Sulphate free has cleared up my ulcers. I
thought that I would send this email as I am sure that there are
many people as fed up as I was of having to use this paste to treat
these mouth ulcers."
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