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 complications. Here are some tips that may 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 reduce 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, contact 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" can change everything.
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 to 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 to 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.
Conserve energy when possible. Just because you are able to do something doesn't mean you should. If you are able to save energy, you can use it later for something more important. (Spoon Theory)
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 also conserve energy.
Have another tip for living with Lupus? Email us at webmaster@cure4lupus.org.
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