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Tips for Living with Lupus
There is so much with Lupus that
is out of our control that it is important to do what we can to minimize
symptoms, flares and other conditions. Here are some tips that
can help you live with Lupus just a little bit easier.
Avoiding Infection
Avoid sick people.
This is of course very difficult so good hygiene is very important.
Wash your
hands often.
Carrying hand sanitizer
is a great idea to make sure you can keep your hands clean.
Avoid
touching your eyes, nose or mouth.
Practice safe food
handling, food borne illness are the most common infections people
with compromised immune systems get.
Clothing,
Personal Care
Flip-Flops, clogs
or any other open back shoe can be a life saver when your feet and/or
ankles are swollen.
Apply sun block 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 sun block in it and hats is another great way to keep the rays from
causing problems.
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.
Use moisturizer on
your skin. This can help avoid some rashes. It can also
help with stretch marks that may be caused by weight gain, and steroids.
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.
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.
Doctors, Pharmacy,
Medications
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.
download
a template here
Do not keep medication
in the bathroom. The changes in temperature and humidity can
affect their effectiveness.
Keeping a
journal of your symptoms,
vital statistics, rest, exercise, food eaten, etc. can help you
identify patterns, reduce flares and identify triggers. Take this
journal with you on doctor's visits.
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.
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.
Use a weekly pill
box to organize your medications. When you have a lot of medications
this can also help prevent confusion and error.
Choose
a doctor you trust, and learn how to communicate with them. (Tips
for A Better Doctor's Visit)
Food, Drink
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.
Easy-Grip utensils can help make meal preparation
easier.
A chair in the kitchen
can make cooking and cleaning easier. One on rollers works
best so you can slide around easily.
Prepared meal services
can help when you are unable to cook but want to avoid fast food.
Home
and Office
LED light bulbs are a great
alternative to CFL bulbs for photosensitive patients.
Shielded fluorescent light bulbs are ok also.
Keep a chair on rollers in the
kitchen. It reduces standing, bending, and reaching to
conserve energy. It is great for empting the dishwasher,
cleaning the oven & refrigerator, etc.
Use ergonomic office chairs,
keyboards, etc. to reduce pain and fatigue.
Take short breaks often.
Do a couple stretches, stand up if at a computer, change
position, etc.
Give yourself a break.
Enlist kids' and spouse's help and remember your home doesn't
have to be perfect if it costs your health.
Mental Health
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.
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.
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.
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.
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.
Minimize Symptoms
Good oral hygiene
will help minimize oral ulcers. Brushing and flossing your
teeth twice a day is recommended.
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.
Early detection and
prevention of flares can minimize symptoms and duration.
Keeping a
journal of your symptoms,
vital statistics, rest, exercise, food eaten, etc. can help you
identify patterns, identify triggers and reduce flares. Take this
journal with you on doctor's visits.
Relationships
Understand how Lupus
can affect your sex life. (Tips for sex
& Lupus)
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.
Educate
friends and family about Lupus. They will be more
understanding when they really know what is going on.
Seasonal
Tips
Re-useable hand warmers
combat Raynaud's attacks. You can carry them with you, activate
them when you need them, boil them for a few seconds and they
are ready to go again.
Avoid winter skin dryness and
chapping by using a mild soap with lotion or a glycerin soap.
Also lukewarm showers are better than hot ones. Apply body
cream or lotion while still damp.
Make applying sunscreen part of
your morning routine all year round. Not only will it help
you avoid the damaging effects of the sun, but it will also help
cut down on rashes and flares in photosensitive patients.
Keep hydrated all year round.
In the summer dehydration is a common concern but it is just as
important in the winter.
Treat seasonal allergies.
The last thing you need is something else for your body t have
to fight. Talk to your doctor about tests, medications and
other treatments for hay fever and other allergies.
Many people with and without
Lupus suffer from
Seasonal Affective Disorder, a type of depression that
occurs at the same time every year, typically in the winter.
If you suspect you are experiencing symptoms of this or any
other type of depression, discuss it with your doctor.
When outdoors in the summer
clothing with sun
block, large brimmed hats and umbrellas can help shield you
from the harmful UV rays.
Sleep, Rest, Exercise
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 TV. 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.
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.
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.
Traveling, Leisure,
Work, Hobbies
Plan ahead when taking
an airline flight. (Tips for flying
with Lupus)
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 attend. Also, plan for extra rest
the day after.
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 else.
Shopping
online can help "lighten your load".
Have another tip for living
with Lupus? Email us at
webmaster@cure4lupus.org.
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