Just because you have lupus (or another autoimmune disorder) does not mean you should stop living your life.
Do your best to remain on top of the disease – education and bit of careful planning will go a long way towards allowing you live a relatively 'normal' life. Naturally you will have certain limitations that others won't experience and you will learn what works for you over time.
The Lupus Association of NSW Inc. is in daily contact with lupus patients and their family and friends. These people are often keen to share their knowledge and experience to help others manage their illness and live the best life they can. Here are some tips we've gathered over the years.
- Listen to your body. If you feel fatigued, take a rest. This may mean taking daytime naps or restructuring your schedule. Ignoring your body's messages and trying to push through will only mean you end up more exhausted and sore for longer. Agressive activity or extended periods of activity could lead to a lupus flare.
- Identify triggers for your flares. Over time, many lupus patients will learn that certain things may trigger lupus flares for them. Such triggers might include high stress levels, prolonged exposure to sun, a virus such as cold or flu, eating certain foods such as alfalfa, tomatoes, potatoes or corn. If you keep a regular diary of your diet, exercise and activities and your lupus symptoms, over time you will be able to take more care to avoid the things that trigger your flares.
- Try to do some form of exercise. This will help prevent muscle weakness and fatigue – just don’t overdo it! Gentle exercise such as yoga, pilates or walking is enough.
- Try to avoid becoming anxious or stressed. Excessive stress affects the immune system and many lupus patients have noticed that their symptoms increase during and after periods of high stress, sometimes leading to a flare. If you can’t avoid stressful situations, learn how to de-stress and practice it regularly. You could try gentle yoga, meditation, walking, a relaxing bath, massage and talking to family, friends or support groups about your anxiety.
- Remember that too much sun exposure can trigger flares. For some lupus patients, they are extremely sensitive to the sun and have to take great measure to avoid sun exposure. For many other patients, the sun can be tolerated in small doses. The amount of sun exposure that can be tolerated without increasing lupus activity will differ between individuals, but you must be very cautious. Some medications used to treat lupus can increase your rate of sunburn, so avoid being exposed to the sun for long periods of time and always cover up. Use maximum strength sunblock that protects against UVA and UVB rays. For women, choose make-ups and foundations that contain sunscreen.
- Avoid contact with people who have an infection (such as a cold or other virus). Potential sources of infection include large crowds (buses, trains and concerts), children and babies. Take extra care when in these situations to avoid germs. Don't stand too close to people in public areas. Always wash and dry your hands thoroughly to avoid contamination.
- Find out as much about lupus as you can. This will help take away the fear of the unknown and assist you in dealing with medical appointments, new symptoms and ongoing management of your condition. Seek support from other lupus patients and support organisations such as the Lupus Association of NSW Inc. Remember that you are not alone and talking to other patients who can relate to what you are going through can help to relieve stress and may even give you some ideas for how to better manage certain symptoms and situations.
- Maintain a healthy diet and include all food groups. If you are on a special diet, make sure you stick to it. Your doctor is trying to help you – so follow his or her instructions and advice. Some lupus patients notice over time that certain foods cause their symptoms to return or worsen. Pay attention to the way you feel and if you notice an increase in symptoms after eating a particular food on more than one occasion, try to avoid it in future. If you feel you have a serious allergy, consider asking your GP about food allergy testing to help you manage the symptoms.
- Do not smoke! We all know that smoking will lower your health in general, even if you don't have lupus. The effects of smoking can also exacerbate or contribute to the worsening of certain lupus symptoms such as heart and lung issues and blood circulation, so if you are a smoker, get some professional assistance to help you quit. Smoking puts extra stress on an already compromised body.
- Keep a list of your symptoms and any questions you might have for your doctor. Write them down as you think of them. This will mean you have a ready list of things to ask at your doctor's appointment and you leave the consult room thinking "Oh! I forgot to ask...". It also ensures that your doctor is kept well informed of your recent condition and can address any issues that may have arisen since he/she last saw you.
- Always keep a record of your medications. You may need to advise different doctors what you are taking, and you will also need to ensure that you are not taking contraindicated medications (ie. medications that react against each other or could cause additional problems for you).
- Always take your medications as you have been instructed. It is important to take the dosage prescribed and you must never stop taking any medication without consulting your doctor first. Some medications, eg. prednisone, must be weaned down gradually.
- Visit your doctor or specialist regularly. Obviously this is particularly important if you feel as though the disease may be flaring up, but it is a good idea to have your lupus checked regularly even when you are not experiencing any major symptoms to ensure the disease is not quietly active.
If you have any other tips you think would be of benefit to other lupus patients or their family and friends, please let us know.