Positive Options for Living with Lupus by Philippa Pigache

Author:Philippa Pigache [Pigache, Philippa]
Language: eng
Format: epub
Published: 0101-01-01T00:00:00+00:00

POL text Q6 good.qxp 8/12/2006 7:39 PM Page 76

Chapter 8

Do-It-Yourself Lupus

Management

This is a book about coping with a chronic illness. We’ve talked about research, doctors, laboratory tests, and drugs. They are all there to inform and help you. But when you come home from the hospital or doctor’s office and go through your front door, you are on your own. Day-to-day coping is up to you, hopefully with the support of friends and family.

This chapter is in some ways the most important one in the book. Yes, you need to know what lupus is all about, but above all you need the know-how, strength, and resourcefulness to grapple with the wolf in its lair. The wolf will always be with you, but you can put it on a leash and make it heel.

At first it will seem daunting. It may feel as though your life will never be the same. Persevere. Break the problems down into bite-size pieces and deal with them one by one. Each person with lupus will have different priorities. For one the fatigue will be the major obstacle, for another the painful joints. Yet another may feel devastated by the damage to self-esteem caused by the skin rashes. Or maybe it is the mood swings that get you, or the headaches, or the upset stomach. Whatever your particular bane, there is something that you, together with doctors and the right drugs, can do to over-come it. Being active in disease management is empowering; it re-76

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D o - I t -Yo u r s e l f L u p u s M a n a g e m e n t 7 7

stores your self-confidence. It doesn’t mean you can’t ask for help if you need it. Getting constructive advice from experts, family, friends, or colleagues is a practical coping strategy in itself.

Most of this chapter focuses on managing the unpleasant symptoms that typically accompany lupus. Let’s take a look at a few of these.

“I Feel Tired All the Time”

Fatigue is probably the most common symptom of lupus and the most intractable. How can you find the energy to cope when you feel like a wet dishcloth all the time? Take comfort in the fact that medication almost always helps. Once the drugs start to take effect, things begin to feel better. Get the doctors to confirm that you are not anemic or that you don’t have a lower-than-normal level of thyroid hormones or essential minerals, all of which can be corrected.

Meanwhile take stock of your life. Lupus fatigue is known by a variety of names: super-fatigue; wipe-out fatigue; a different kind of tired. Acknowledge it, and then treat it—with rest if necessary, in whatever dose is required. Jot down the situations or activities that make you feel most exhausted, and find ways of avoiding them, modifying them, or correcting the fatigue they cause.

Gil ian’s Story

Gillian is a f inancial high-flier, a specialist in private/public partnerships. When lupus s truck, in her early thir ties, her biggest problem was finding ways to cope with business travel.

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