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Living Better with Lupus CAN A PERSON WITH LUPUS LIVE A FULFILLING LIFE? YES! There are steps that you can take to manage this disease so that you enjoy and feel more in control of your life. Many of these adjustments are very inexpensive. You often hear phrases like pain management; positive attitude and lifestyle changes. Before you can implement these into your daily life, you must first learn about lupus and what environmental factors, ie. stress, sun exposure, trigger your flares. Understanding lupus helps identify what adjustments you may need to make. You need to make decisions that are best for you and then take responsibility for either helping or hindering your life. In essence you need to be in tune with how your body reacts to each of these activities and know when it is time to take a break. This will also lessen the frequency of over doing it, as many lupus patients often do. Attitudes, Feelings and Thoughts Your mind does play a large role in how your body feels. By hanging on to negative feelings you are creating more stress for yourself. Accepting the fact that everything you do to your body, think and feel has an impact on your life. You have the ability to help yourself achieve a state of wellness by choosing options and making a commitment to enhance your life. It is equally important to realize that this is something you will need to work on every day. A positive outlook doesn't just happen. By evaluating your potential, setting realistic goals and making a commitment to carry them out gives you a greater sense of balance. You can control how you cope with lupus rather than be controlled by the disease. Believe it or not you are not responsible for developing this disease. You need to focus on your abilities rather than your disabilities. View yourself as taking a proactive approach to living with a chronic illness. Your attitudes, thoughts and feelings are truly your own and you are free to change them as you develop a positive outlook. There is no rule that you must keep feeling afraid, bored, confused, frustrated or depressed in your life. You can choose to change these feelings. Adjustments Planning includes thinking through all of your daily and weekly commitments. Are there any areas where you could find short cuts? Visualize each of these activities and be realistic about the physical strength you need to carry them out. Pushing yourself too much today may have you paying the price with increased fatigue later. Sunny, Cloudy, Rainy Weather Lupus patients are constantly warned about the effect of ultraviolet A and B (UVA and UVB) rays from the sun. A rule of thumb is that if you are going to be outside for more than a few minutes use sunscreen. Use a sunscreen at a minimum (SPF) of at least 15 so that both UVA and UVB rays are blocked. Remember UVB sun exposure is greatest at midday, so do your outdoor activities early in the morning, late in the afternoon, or in the evening, and wear protective clothing. Also, ultraviolet radiation is also greater at higher altitudes. The UV exposure at sea level in one hour is the same as the exposure in five minutes at an altitude of in Mexico City or the Rocky Mountains. Most people with lupus are sensitive to changes in barometric pressure. You will find that when the weather goes from wet to dry or hot to cold you will feel achier. The ideal climate for someone with lupus is where there are few changes in the barometer. Diet Everyone should have a nutritious well-balanced diet, especially lupus patients. There are some suggestions that fish, or especially eicosopentanioc acid in fish oil, might have modest anti-inflammatory properties. Keep in mind, the amino acid L-canavanine, is found in alfalfa sprouts which can activate the immune system and increase inflammation in people with lupus. Other foods in the legume family have only a fraction of the L-canavanine that sprouts do and are safe to eat. People with lupus taking corticosteriods should limit their sugar, fat, and salt intake. Keep in mind that tobacco smoke contains an aromatic amine, hydrazine, which can cause flares of cutaneous lupus. Smoking also worsens the symptoms of Raynaud's and impairs circulation. Pain Management Applying ice to painful swollen joints works much better than dry heat. Try soaking in a hot tub, sauna, Jacuzzi or hot shower. Cold applications are also recommended for injuries, ie. Acute sprains. Exercises It is very common for lupus patients to experience a progressive reduction in their exercise/physical activity level. Often times it turns into a cycle of inactivity followed by deconditioning resulting in increased symptomatology. The best way to go about starting an exercise plan is to set priorities and realistic goals. Make sure to include a rest program so as to not over do it. Take a look at what fatigue patterns you notice, note that this may also change as the seasons do. When you experience increased joint pain and stiffness, do slower more passive range of motion exercises so as to be consistent with your program. In the long run this will prevent the onset of increased stiffness and joint pain. Remember stronger muscles around the joint increase support and protection to the joints. FATIGUE Why do people with lupus experience extreme fatigue? It can be caused for a variety of reasons. Primarily fatigue is due to inflammation, anemia, chronic pain and chemicals known as cytokines. The best way to counteract fatigue is to pace yourself. People who stay in bed all day become weaker while on the other hand super-moms and dads who put in a 20-hour day can cause a lupus flare. You need to balance your activity levels. How do you create a schedule so that you pace yourself daily? By setting realistic priorities. Look at each task and evaluate their necessity and purpose. Consider asking someone to help with certain tasks. Communicating with your doctors In order for you to receive the best advice from your physician you must be up front with him/her. Being honest about taking your medicine, stress, activity level, etc. It is also recommended that you keep a diary of how you feel. This will help both you and your medical team to determine the treatment program that is best for you. Make sure you discuss disease management issues with your doctor. Always keep your doctors informed of any new symptoms. Difficulty Remembering? Some people with lupus will experience difficulties remembering appointments, names, events, etc. Often times this is referred to as a "lupus fog". Medical professionals refer to this as cognitive dysfunction or cognitive impairment. "Lupus fog" is a reflection of a vascular spasm, which can reduce the amount of oxygen getting to the brain. These symptoms may come and go. You need to discuss treatment options with your doctor. Many patients are referred to psychologists, speech therapists, and physical therapists who can help you cope with this by initiating biofeedback and specific strategies to improved concentration. Alternative Therapies Discuss with your physician any alternative therapies you are interested in trying. There are many that are unproven and may exacerbate your disease activity.  |
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