Newly Diagnosed Patients
Advice for Newly Diagnosed Patients
Lupus is now recognised as an important and common illness of modern times. It is a disease in which the immune system goes 'wrong', becomes overactive. It can affect any organ of the body. It is difficult to diagnose lupus as the symptoms can be so diverse, including for example; fatigue, rashes, allergies, depression and kidney failure it is called the 'great mimic'. There is presently no cure. Lupus affects each patient individually, however most patients experience 'flares' when the lupus is particularly active and 'remission' when the lupus is inactive.
Even though it's a shock when a diagnosis is received, a lot of lupus patients say they feel relief that they can put a name to their illness, this often comes after many years of misdiagnosis. Having lupus is not the end of your world, it is a serious illness which will have to be monitored but there's no reason why you shouldn't continue to lead a full life, even though you might have to make some adjustments.
Learn as much as you can about the condition so that you can recognise possible new symptoms, so that you are then able to alert your doctor. When gathering the information avoid books from the library as they are usually out of date, also be very wary of material you read on some websites as they can give misleading/wrong/out of date information and patients become misinformed and scared.
Diet & Exercise
Eat a well balanced diet. There are no particular foods recommended (alfalfa sprouts should be avoided) but obviously following a healthy diet including all nutrients will help. We have trialled and recommend, the Low GI/GL diet here at the unit with great success. Patients reported benefits such as - less tiredness/more energy, better quality/more sleep at night, mood elevation, weight loss. Please see our article on the website on diet and lupus by Dr David D'Cruz. If you want to take supplements or natural remedies you need to check with your doctor or specialist (for example echinacea is not recommended for lupus patients).
Exercise is recommended, but you should not overstrain your joints. Swimming and particularly hydrotherapy can be beneficial; also gentle exercise such as walking or Tai Chi may be helpful.
Rest is vital to allow your body to recuperate and lack of sleep will make you feel even more unwell. At first you may find it difficult to accept the fact you will need extra rest, you must recognise your bodies signals that it needs to rest. Daily chores can be impossible when you are in a flare, if the hoovering needs doing and you feel tired let it wait, it really won't matter. You must learn to listen to your body's signals, learn to pace yourself, prioritise and even say no. Try to get plenty of sleep, 'catnaps' can be very beneficial. You also need to learn to pace yourself throughout the day so that you don't get overtired.
Try to manage stress levels where possible. Stress can trigger a "flare". Some patients benefit from alternative therapies such as yoga.
70-80% of all lupus patients react to the sun's rays and if exposed their disease may become more active; therefore all patients should wear high-factor sun block when exposed to the sun and this should be reapplied every 2-3 hours. There are a number of companies that supply UV filter clothing.
Family and Friends
It is very difficult living with a chronic illness, patients often feel isolated and may stop seeing or talking to those they care about. Feelings of anger regarding having lupus is common. Changes to a previous lifestyle may cause frustration. Lupus is very unpredictable; a patient may feel very well then suddenly feel very ill. This often culminates in patients being wary of making definite plans such as socialising etc. Patients are often told that they look really well; appearance is not an indicator of lupus. Patients look well and feel dreadful. As well as educating yourself you need to help educate those around you so that they understand how you feel.
Family members may feel angry and frustrated that you are ill and they 'can't make you better'. They may also feel guilty that you are sick and they are healthy and even feel resentful that they have to take on more responsibility, in the home or financially.
This is a helpful article about how to explain lupus to children: http://www.lupusinternational.com/Living-With-Lupus/Overview/How-Do-You-Explain-Having-Lupus-to-your-Children-.aspx
Many patients with lupus suffer from depression. When you are feeling ill it is hard not to feel depressed. When feeling depressed it's hard not to spend a lot of time thinking about your illness. It's a vicious circle. Some people find it beneficial to talk to others with lupus; some have a trusted friend or family member they prefer to talk to. Medication, stress reduction/relaxation techniques and gentle exercise can help. By distracting yourself from your illness you can lessen your awareness of the pain, activities such as watching television, listening to music, taking up a hobby or volunteering can help do this.
Attitude is everything. Above all it is important to remain positive, avoid talking to people who do not remain positive. Try to stay as active, mentally and physically, as possible. Yes, you will have new limitations but most patients when their disease is under control can lead normal active lives. When you have lupus you may have some very difficult days, you need to learn how best you personally can cope with them.
Lupus is only one aspect of your life, not all of it.
For more information watch our lupus documentary 'Lupus? What's that?'