Living and Managing Lupus

Whether you have been recently diagnosed with lupus or have been living with it for many years, learning to live with, what can be a very debilitating disease, is not an easy task. Living with Lupus can be difficult, and it’s normal to feel overwhelmed. Establishing healthy lifestyle habits is an important part of living with lupus. Learning how to manage the daily challenges of a disease that’s both chronic and unpredictable is key to living well with lupus.

Here are some tips we’ve put together to help people with Lupus cope with lupus on a day-to-day basis.

One of the most important tools you have to manage lupus is yourself – your effort, your attention and your awareness of your body. Studies suggest that people who are well-informed manage their condition better.

Remember to:

  • Always take your medications as prescribed, in the correct doses, and at the advised time of day.
  • It‘s best to avoid making changes to your medications without talking with your doctor, especially if you’re considering stopping or increasing treatment.
  • It is advisable to keep a diary to record your symptoms, medications and side effects.
  • Tell your doctor if your symptoms change or get worse talk.

A healthy lifestyle is good for everyone – but for people with lupus, it’s especially important. Maintaining a well-balanced diet and exercise regularly or engage in some kind of movement can help enhance their overall wellbeing.

Use these tips to help you eat healthy and be active:

  • Eat lots of fruits, vegetables and whole grains
  • Include rich sources of calcium, especially if you take corticosteroids, which interfere with the absorption of calcium and can lead to osteoporosis. For example, diary, broccoli, spinach.
  • To reduce your risk of heart disease, follow a diet low in saturated fat and cholesterol. Some research suggests that a low-fat diet may decrease an over-active immune system. Low fat intake also decreases your risk of certain cancers. When you do use fat in cooking, choose olive or canola oil.
  • Choose healthy protein foods like poultry and seafood.
  • Try walking, swimming or biking as it helps to maintain muscle integrity and to build muscle mobility and tone, without placing undue stress on the joints.
  • Yoga, Tai Chi or Meditation can also help relieve stress and loosen tight muscles.

As much as possible, it is important for people with lupus to avoid stressful situations. Stress can trigger symptoms or make them worse.

It is impossible to avoid stress altogether.

  • Plan ahead
  • Seek support where necessary
  • Make time for relaxing activities
  • If you don’t get things done or have to cancel plan, that’s fine. Your health comes first.

Sun exposure can cause rashes (including the butterfly or malar rash) and lesions or trigger flare-ups of the disease that could affect internal organs, so it is important to protect yourself. It is essential for people with lupus to take extra care with sun protection. Even short periods of sun exposure can make a lupus patient feel very unwell. It is therefore necessary to avoid the sun in the hottest parts of the day, to wear sun block all year round, and to wear sun-safe clothing (such as a hat, clothing with a tight weave, including a long-sleeved shirt and long pants).

Lupus is a serious condition, but diagnosis and treatment are improving. Lupus can today be treated and controlled.

People with lupus will need to adjust to the demands of the illness and the impact of medication. Whilst some are severely afflicted by lupus, more and more people with lupus are finding that they can be active and productive.

The aim must be to regain some quality in everyday life. So, remember to:

  • become well-educated about lupus
  • offset fatigue by rest and by pacing daily activities
  • try to resolve stress, depression, pain or anger
  • avoid exposure to direct sunlight and fluorescent lights
  • be open with family, friends, colleagues on lupus unpredictability
  • ask for help from family, friends and health professionals