Positive Options for Living with Lupus (13 page)

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bothers me; they pick up my messages when the y come in the following morning. As for business trips to New York, or, worse, to Tokyo, I allow an extra day so that I can sleep for at least ten hours before I have to perform. And, of cour se, I tend t o increase my drug dose before those trying times.”

Coping with fatigue, as Gillian found, requires a mixture of cessa-tion, adaptation, and compensation. Don’t drive yourself into the ground, and don’t blame yourself. If you have always been a busy, industrious person it is important to tell yourself that rest is therapy, not laziness, let alone sin. Lupus fatigue should not be ignored in some mistaken stoicism or guilt trip.

“I Look Awful”

An illness that affects the skin, especially the skin of the face, is devastating because in addition to bringing discomfort it damages your self-image. You don’t just feel ill—often, you know you look ill.

Fortunately, medication usually banishes a lupus rash, and there is a lot you can do yourself to make sure it stays that way. Once again it involves making note of what prompts a lupus flare
in your
case
. The most likely cause is light of some sort. More than a third of people with lupus are photosensitive. As with sunburn, the fairer your skin, the more likely you are to be vulnerable. It doesn’t mean you have to stay indoors, but when outside you should probably wear long sleeves, long pants, and a broad-brimmed hat, and use a high-SPF sunscreen generously and repeatedly wherever your skin is exposed. Surveys reveal that nearly everyone fails to use sufficient sunscreen, and the places most likely to be neglected are the tem-ples, the ears, and the back and sides of the neck. (Women, or men whose workplace is tolerant, could do worse than grow long hair and bangs.) And when you choose a sunscreen make sure it is non-allergenic. People with lupus are more prone than most to allergies.

Watch out for sunscreens that contain para-aminobenzoic acid (PABA) or padimate; quite a few people react badly to these substances.

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You will gradually get to know your limits, but until you do, approach high-reflectivity locations such as beaches, ski slopes, and boats with extreme caution. Reflected light can make such locales as lethal in winter as they are in summer. If you are a light-sensitive lupus sufferer you may also need to be wary of some forms of artificial light. Unshielded fluorescent bulbs emit significant amounts of ultraviolet light, as do halogen lamps. One woman with lupus found that her skin was affected by repeated exposure to the “flashbulb” in the photocopier—a hitherto unsuspected occupational hazard.

Like Charlotte (see Chapter 6), you may find that your photosensitivity is aggravated by certain drugs or foods. A list of things to watch out for appears in the box on the next page, “Things Known to Increase Photosensitivity.”

Allergy is another trigger for the skin symptoms of lupus, and, as explained, people with lupus are more prone than average to allergic reactions. The fact that the human body can absorb things via the skin has been successfully used by drug manufacturers to their advantage. If a drug can enter the system this way it avoids having to pass through the hostile environment of the stomach.

However, the preservatives, colorants, perfumes, and other addi-tives used in cosmetics, aftershaves, detergents, and a range of common manufactured products that come in contact with the skin in the course of modern life may prompt an allergic reaction and, in a lupus sufferer, a flare-up. Nail polish contains the same sulfonamides that sparked Charlotte’s lupus; a whole range of cosmetic substances, including permanent hair colorings, have been known to set off allergies—again, especially among people with lupus.

This doesn’t mean that from now on you must go naked and unadorned. Nothing would be more likely to make you feel miserable about your appearance. It does mean that you should adopt an attitude of extreme caution and constant vigilance about what goes on your skin. In the kitchen and during housecleaning, rubber gloves are de rigueur; those delicate, reverse-handed gloves used by doctors won’t make you clumsy. And when you go shopping for cosmetics look for the hypoallergenic selections.

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Things Known to Increase Photosensitivity

Some foods that derive from plants that contain chemicals called psoralens may aggravate photosensitivity. The most prominent are lemons, limes, celery, parsnips, parsley, and figs. Even people without lupus have been known to suffer nasty skin reactions if they have spilled fruit juice on their skin on a sunny day.

Drugs that have this effect are many. The ones that people with lupus are most likely to encounter are antibiotics (not just sulfa drugs, but also tetracyclines), an NSAID called piroxicam, a diuretic (water pill) called hydrochlorothiazide, some blood-pressure medications, antidepressants, and antiseizure medications. Photosensitivity is always mentioned among the side effects listed in the patient information leaflet (PIL) of a prescription drug. For a detailed list of medications with this potential side effect, go to the website www.emedicine.com/derm/topic108.htm (see Resources).

If you do have a flare-up of your lupus rash, the accessibility of the skin as a route for medication works to your advantage. Steroid skin creams reduce the itchiness of both malar and discoid rashes (1 percent hydrocortisone creams are available over the counter), and the side effects common with oral corticosteroids are rare with topical products. Calamine lotion is also helpful for itching, as are warm baths with colloidal oatmeal or a bath-oil rub. Some people find glycerine soap less drying than the regular kind. Sicca syndrome, also known as Sjögren’s syndrome (see Chapter 9) after the physician who first described it, contributes to overall skin dryness.

Ask your doctor to recommend an unperfumed pharmaceutical moisturizer, as opposed to a cosmetic product, that you can use regularly all over your body.

If self-help remedies fail you, there are two new immunosuppressive topical treatments that the doctor can prescribe for you: tacrolimus (Protopic) and pimecrolimus (Elidel). Launched in 2002, these creams are not steroids and so far appear to have minimal side effects.

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“Sometimes I’m So Depressed

I Want to Die”

Being ill makes anyone feel fed up. The realizations that you are ill and it hurts, that it’s mucking up your life, and that it could go on for the rest of your life can feel like a prison sentence.

In fact, people with lupus are not depressed solely as a reaction to having the illness. The disease itself can cause problems in the brain that lead to depression. People diagnosed with lupus often have a history of depression, and the good news is that it lifts once they are treated. The bad news is that some treatments—steroids, for example—can in themselves cause mood disruption. Disease and treatment don’t affect everyone in the same way. If you do continue to feel disabling depression once your lupus is treated, your doctors may suggest antidepressant drugs, at least while you come to terms with things.

However, you can also do some things to help your body cope with your feelings.

Exercise

One of the most effective ways of lifting mood is with regular, consistent exercise (although exercise may also be used symptomati-cally, to relieve stress or improve mood). Since exercise is also a helpful way to maximize movement and range in arthritic joints and an even better way to stave off the risk of osteoporosis, it comes highly recommended for people with lupus. Some people also find that it helps with fatigue, and exercise is, of course, to be recommended for everyone who values a healthy lifestyle.

It’s a well-known fact that exercise gives you a natural high.

Some people become addicted to it, work out to achieve it, and feel down if they can’t get their regular fix of it. The explanation is thought to be that exercise releases natural body chemicals called
endorphins,
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become focused on the present. Those who don’t exercise are skeptical of these claims. Get into an exercise routine and discover the truth.

Exercise doesn’t necessarily have to mean lifting weights or going to the gym, though the use of moderate weights—around 2½

pounds—can, among other benefits, be helpful in warding off osteoporosis. Brisk walking, swimming, dancing, and golf (if you’re walking rather than riding in the cart) all keep the joints and muscles active, encourage deep breathing, and pleasantly occupy the mind. If your joints are swollen you will need to strike a balance between rest and gentle exercise. If in doubt consult your doctor or a physiotherapist.

Maintain Meaningful Contact with Others

Which “others” only you know. Keep doing things with your children, keep going to church or to your kids’ soccer games, keep singing with the choir, and keep having your parents over for lunch.

Keep walking your dog or feeding the wild birds. Animals don’t notice if you look funny or are less lively than you were, and those who know you make allowances. Social interaction encourages you to focus on other people and activities—something other than your own disrupted life. Doing things you enjoy or are good at establishes a continuity that counteracts feelings of disruption and loss. When you switch the spotlight away from yourself, help someone else, or solve a shared problem, you stop being a victim and become an actor in life again. And being an actor restores your self-esteem.

You could decide to join a lupus support group and by sharing your problems help yourself and maybe others. Organizations and websites listed in Resources, at the end of the book, will help you find a group near you.

Give Yourself Rewards

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will remind you, “Remember how much you laughed at
Shrek?”

Rent the video. Laughter is therapeutic. Write down favorite foods, favorite places, favorite simple pleasures: stroking the cat, burning scented candles, soaking in long, hot baths. Find little ways to reward yourself that will lift your spirits when you are down. Listing them is a valuable exercise in itself by turning your attention toward positive, enjoyable experiences. With practice you can train yourself to
think
about good experiences as a way of driving out negative thoughts, especially if they keep you awake at night. If your imagination isn’t up to picturing yourself lying on the beach or listening to a nightingale, get a tape of soothing sounds to help you drop off to sleep.

Accentuate the Positive

The principle behind
cognitive behavioral therapy (CBT),
one of the most successful forms of psychotherapy, is modifying how you think.

Every situation can be interpreted in different ways. With practice you can turn negative thoughts backward, as though you were arguing with someone. “I so miss sunbathing” becomes “I’ll cultivate a pale and elegant look.” “I’m such a burden on everyone” becomes

“I’m so lucky that everyone is so helpful.” Again, at first you may need help, so start the argument with someone else, such as a coun-selor, partner, or friend. Once you get the idea, every negative thought becomes a challenge: How can I turn it into a positive one?

“Choosing What to Eat Has Become

a Minefield”

Both lupus and lupus medication can upset your stomach. Furthermore, if you have a chronic disease it is more important than ever to eat sensibly. Finally, you may have to deal with allergies, or foods that appear to prompt a flare-up. Nevertheless, it is important not to put too much emphasis on the role of food in illness. The phrase

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much of the wrong things, or too little of the right things, but with few exceptions—bacterial contamination, genuine allergies, or food intolerances—food is neither the cause of disease nor a cure for it.

Nevertheless, you will be bombarded by books, magazine articles, and sites on the Internet that promise instant response in your disease symptoms from the introduction or removal of some dietary element, quite possibly costing you big money. Take it all with a very large pinch of salt. (Don’t take too much real salt because that could be bad for fluid retention and your blood pressure.) Studies of large numbers of people with lupus are the most reliable source of information. Still, you will not necessarily conform to the norm.

People can be very passionate about food, and if you believe that one food is making you feel better or another causing you flare-ups, it will do no harm to follow your instincts.

How Many Calories?

Being overweight is not good for anyone, and especially people with inflamed joints, but apart from this general health proviso, there is little evidence that quantity of food affects lupus. There have been studies that suggested that fasting or a vegetarian diet might reduce arthritic symptoms, but the studies were not very well controlled.