Sharing the Journey: Healthy Habits

This series – Sharing the Journey – is by you and for you. In your own words, we highlight the perspectives and personal experiences of people who struggle with lupus each day. Mostly, we celebrate what makes the lupus community strong by sharing our journey, together.

What is your best advice for someone who is trying to develop a positive habit that will help to prevent flares?

Find something you love, whether it is reading, or sitting on the porch with a cup of coffee, playing sports, anything… and do it every chance you get. When I get sick or tired or frustrated with my illness or myself I either write or read – both of which take me out of the reality I am in and let me get away for a little while. – Michelle Piper, age 26

Avoiding any form of stress should be your number one goal in preventing a lupus flare. Since people handle stress differently, you have to find out what makes you the most calm and happy and make that a part of your daily regimen. Getting plenty of rest, following doctor’s orders and connecting with lupus groups (something your doctor can refer) for support are other ways of staying healthy. – Sabrina Nixon, age 49

I would suggest taking a daily nap.  I typically sleep for about 30-45 minutes in the afternoon every day. It doesn't have to be long, or even at a logical hour of the day (sometimes I take naps at 7 pm if I'm going to have a late night).   This is not only a great time for me to get some extra rest, but it also helps me to de-stress and relax in the middle of my busy day.  As a college student involved in many activities, it is difficult to get enough sleep every night.  Naps are always a great way for me to grab a little extra rest during the day, and can often take the edge off my exhaustion if I didn't get enough sleep the night before.  Just a warning though!  If you make this a daily habit and a day comes where you can't take a nap, you will get super sleepy in the afternoon.  It has happened to me at quite unfortunate times and I have had to combat it with caffeine. – Becca Mighell, age 19

I would not underestimate a flare or the damage lupus can do. It is better to be safe with positive habits than miserable and sick. – Madison Palmer, age 23

When I was diagnosed with lupus my doctors insisted that I exercise for years.  I refused because I didn’t like to exercise.  It wasn’t fun, and it seemed like a chore.  However, one day I decided I wanted to “tone up” and get my “beach body” ready.  As a result, I became addicted to weight lifting! I saw gradual progress all over my body, and I noticed a significant improvement in my level of fatigue and my mental clarity.  I now exercise regularly, and regret not listening to doctors sooner.  My best piece of advice for someone trying to develop a positive habit would be to find what works for you.  Mental health is very important when dealing with chronic illnesses.  For me, a happy mind makes my whole body feel better.  I search “inspirational quotes,” “funny quotes,” and “happy quotes,” on Pinterest.  I find encouragement through these quotes, which in turn create a sense of peace for me. – Kayla Britt, age 25

The best piece of advice I can offer to someone who is trying to develop a positive habit to help prevent flares is to make sure you take your medicine properly, eat fruits and vegetables and take a walk every day for exercise. – LaTrease Brown, age 31

In dealing with Discoid Lupus – one word – sunscreen. It's vital. Finding a good sunscreen and applying it EVERYDAY... Several times per day is essential to keeping flares at bay. Also, finding the right time of the day to take your medicine and remember to take it each day. keeping a solid schedule of downtime and rest is so important! – Michele katz, age 43

My best advice is to always take your medicine. When I begin to see spots on my face or begin to experience a flare up, I have a program that my doctor gave to me – I put the protopic ointment on my face and then take my medications every day at the same time. I need to always make sure I keep up on my health, go to bed early, eat healthy foods, and just be aware of my body and what it is telling me. I always need to be aware of what I need to do when I don't feel good. I need to always keep up on my medications regularly but especially when I am starting to get sick. – Kylie Katz, age 17

The best advice I can give to try to avoid a flare up is to know your limits and get rest. Do not push yourself to the point where the next few days you are bed ridden. If a flare still happens, then always remember that better days are to come. Lupus doesn't define anyone, how you choose to live with lupus defines you. – Jazmine Trujillo, age 22

I feel that rest is the best advice for someone looking to develop a positive habit to prevent flares. Rest doesn't necessarily have to mean sleep. It can mean taking time out of a busy day/week to sit down and rest to re-group. I find meditating or praying helpful. It’s something you can do quietly at work or at home. I also feel a change in scenery is helpful to develop new healthy habits. If what you’re doing isn’t working, try changing your environment or people you are around. – Kristin Larson, age 33

A healthy diet is imperative, as the key to living a healthy life is eating healthy. Fruits and vegetables are essential. My diet is based on alkaline based nutrients. This grants me the much needed energy I require. Also, I only eat organic vegetables and fruits while incorporating juices in my diet. Fruits and vegetables heal the body in a more natural manner than the medication. The medication has the tendency of throwing the body off balance. Additionally, maintaining a good mental state is also very important; every month I get massages. This helps me not only by relaxing, but with removing certain toxins from the body. Also, a lot of people with lupus have a weak immune system, so if one is around anyone that's sick one must take extra precautions. A common treatment for Lupus is steroids. Steroids weakens the immune system. Also, I detox every two months to try to keep my body balanced. Staying active is a must. My sister and I keep each other motivated by going to the gym, and working out for about 45 minute. Exercising helps strengthen us, and gives us energy. My message to my lupus fighters is to eat healthy and exercise. Feed your soul what it needs, and live life to the fullest regardless of how you may feel. Push through the pain, and don't let lupus take over. Get a handle on this horrible deadly disease. – Lashanda Lawson, age 31

Everyday ways to stay healthy with lupus

Nothing sets you back like a lupus flare, but luckily there are simple things you can do to help you stay healthy. Follow these five tips for your best health:

1. Eat right—While there is no special diet for people with lupus, it’s important to eat healthy, well-balanced meals. This means plenty of vegetables, fruits, and whole grains, as well as moderate portions of lean protein. Remember to watch the sodium content and choose fresh foods over processed snacks.
2. Get your ZZZ’s—When you’re feeling fatigued, nothing renews your energy like a good night’s rest. People with lupus may need more sleep than the average person to feel refreshed, so be sure you give yourself plenty of quality pillow time.
3. Hit the gym—When you’re tired and experiencing joint pain, exercise may not be at the top of your list. But doing regular exercise at a level you feel comfortable with can help control weight gain you may experience from your medications and improve muscle stiffness.
4. Remember sun protection—Many people with lupus are sensitive to the sun, and too many rays can set off a flare. You can protect yourself by applying sunscreen 15-20 minutes before you head outdoors and reapplying often.
5. Take your medicine—It sounds simple, but remembering to take your medication as directed by your physician is essential to your health—even if you feel like you don’t need it. Keeping a medication journal can help you keep track of what you’re taking and how your doctor tells you to take it.