Flip-Flops, clogs or any other
open back shoe can be a life saver when your feet and/or ankles are
swollen.
Apply sunblock before you leave
home and carry it with you everywhere you go. Samples and
travel sizes are a great way to avoid carrying a big bulky bottle
with you everywhere.
Wearing clothing with sunblock
in it and hats is another great way to keep the rays from causing
problems.
A bottle of water by your bed
can help combat the dry mouth that comes with some Lupus
medications. Saline nasal sprays can help with a dry nose and
to help prevent nasal ulcers.
Practice good sleep hygiene to
combat insomnia. Things such as a nightly routine, going o bed
at the same time, only using your bed for sleep and sex, not having
a t.v. in the bedroom, and reading or doing some other calming
activity right before bed can all help you get to sleep. If
you are still having trouble, don't be afraid to talk to your doctor
about a prescription to help.
Re-useable hand warmers combat
Raynaud's attacks. You can carry them with you, activate them
when you need them and boil them for a few seconds and they are
ready to go again.
Keep a typed list of your
medications, allergies, and conditions with you. It is good in
case of an emergency and very nice to have when you go to the
doctor.
Do not keep medication in the
bathroom. The changes in temperature and humidity can affect
their effectiveness.
Avoid sick people. This
is of course very difficult so washing your hands, and keeping an
eye out for infections is very important. Carrying hand
sanitizer is a great idea.
Good oral hygiene will help
minimize oral ulcers. Brushing and flossing your teeth twice a
day is recommended.
Find an exercise that you can
do on a regular basis. Something fun always makes exercise
easier. A trendy and very fun new way to get exercise is with
a Nintendo Wii.
Exercise your brain.
Crossword puzzles, certain video games, and memory games, are just a
few of the ways to keep your brain in shape.
Keep notes, you never know when
brain fog will strike.
Eat a low fat, low salt diet.
The number one killer of Lupus patients these days is heart disease.
Keeping your heart in shape is a big priority. A low salt diet
not only is good for your heart but also reduces stress on your
kidneys, one of the most commonly effected organs in Lupus.
Find a way to contribute to
Lupus awareness and/or research. You can give of your time or
money to a Lupus charity, wear Lupus
awareness merchandise,
write to your
legislators, etc. Contributing to the cause will remind
you that there is hope. It is also a great way to meet others
that are going through the same things you are.
Plan ahead. If you have
an event you don't want to miss, get extra rest the day before.
This is not full proof, but it does raise your chances of being able
to atend. Also, plan for extra rest the day after.
Find a "Lupus friend".
Whether it's one person or a whole support group, local or online,
having at least one person who truly "gets it" is a life saver.
Keeping a journal of your
symptoms, vital statistics, rest, exercise, food eaten, etc. can
help you identify patterns, reduce flares and identify triggers.
Consider a haircut that is easy
to manage. So on those days you just can't manage you can
still feel good about the way you look.
Consider using a wheelchair or
scooter when shopping. A lot of stores provide them now and
using them can allow you to do your shopping when you might no
otherwise be able to, or it can conserve energy so that you can use
it for something more important.
Use moisturizer on your skin.
This can help avoid some rashes.
You can use make-up to minimize
a malar rash, moon face or scars. Consult with a make-up
artist or search the Internet for tips on how to do this.
Give yourself a break.
Lupus patients tend to be very hard on themselves, whether it is a
few extra pounds or not being able to do things as well as you used
to, understand that it is out of your control.
Always be learning. You
can never know too much about your disease. Just remember to
be careful of the source, not all the information out there is
reliable.
Reduce stress! Anyway you
can, this must be done. Meditation, yoga, being w/ friends,
playing a game, exercise, a hot bath, massage, acupuncture,
biofeedback, tai chi, whatever works for you.
Wear comfortable clothing and
shoes, the last thing you need is pants you can't breathe in when
you are already in pain.
If you really want to wear
heels or other harsh shoes, bring a more comfortable pair of shoes
just in case.
Take breaks, even just getting
off of your feet for a few minutes, resting your head on your desk
for 5 minutes or getting up and walking around the room can do
wonders. Try to do this at least once an hour.
Watch your weight. This
one can be next to impossible on some of the medications used to
treat Lupus so don't be too hard on yourself, but the closer to a
healthy weight you can be, the better.
Ignore negative people and
negative comments. Even the most well intentioned person can
say something that cuts deeply. Try to remember that they just
don't get it.
Write about your feelings.
This can be a wonderful way of releasing stress and getting in touch
with what is going on in your head.
Live in the now. Worrying
about what you did or didn't do in the past or what the future may
bring just causes more stress, and you can't do anything about it
anyway. Now is all you have control over.
Type
up a list of your medications, doctors, diagnosis, allergies, and
emergency contact. Keep this list in your wallet or purse.
Make sure to update it regularly. This is helpful not only in
an emergency situation but is also helpful to give to your doctors.
Keep
a list of medications you have tried in the past that did not work
for you.
Always
use the same pharmacy, they can get to know you, alert you to any
contra-indications, and they will have records of everything you
have used in the past.
