Coping With Lupus
Coping with Lupus
Suggestions on how to cope with Lupus from NorthEast Lupus Foundation:
Become well-educated about lupus.
Rest is most essential. The fatigue is not like the fatigue or tiredness from physical exertion.
Try to prepare for the up-and-down nature of the disease. Plan alternative activities, alternate time schedules. Allow time for extra rest.
You can reduce fatigue by developing priorities and learning to pace your daily activities. Break down big, long-term goals into small, manageable steps that can be accomplished in short amounts of time.
Be open with family and friends about the unpredictable pattern of lupus, and how the disease affects you.
By listening to your pain as a signal, you can begin to control it.
Find positive ways to channel such negative feelings as anger and depression. Sometimes anti-depressants are given to lupus patients because they really do help with the emotion and pain, not just to placate the patient or to imply that the problem is psychological.
Try to accept the things you cannot change, rather than feeling constantly frustrated and upset over situations beyond your control.
Remember that stress, depression and pain are all closely connected and each affects the other. If you can, take steps to solve any one of these problems so as to reduce the extent of the others.
Approximately 1/3 of lupus patients are photosensitive. Avoid direct and prolonged sun exposure and ultraviolet light from artificial sources (e.g. fluorescent lights). Wear broad-brimmed hats and cover other exposed parts of the body when out of doors in sunlight and use sunblock (not sunscreen) creams.
Although lupus doesn't directly affect the body's capacity for sexual enjoyment, the disease can cause problems. Open, honest communication is necessary to overcome this.
If lupus has limited your hobbies and activities, find new ways to use your skills.
Ask for help if you need it. Family and friends, doctors and other health care professionals together with your national and local Lupus associations are all sources of help and support.
Join your local support group and make friends with others who have lupus.
A Note about Support groups: Support groups, whether on-line or in "real life" are not always right for every person. Most are dynamic and therefore from one meeting to another may be either negative or positive. If you are not getting what you need out of a support group, keep looking for other sources of support. Support is one of the most critical aspects of coping with Lupus.
Some Products That Can Make Our Lives a Little More Comfortable
The following do not include supplements or any form of alternative therapy but are strictly mechanical/material devices that some find helpful in coping with symptoms of Lupus or related disorders. These products are not endorsed by the Lupus Foundation of America and no financial compensation is made to the authors of this document. Resources for many of these products can be found under Products That Help
Here are some general recommendations/opinions from many patients about such products:
It must be noted that many of the products that are so helpful to us, are also rather costly compared to "store brands". However, in most all cases, these products last longer, and serve a greater purpose than store brand products do.
Sun protective clothing: These are items made of materials or special weaves that help reduce the amount of UV that would otherwise pass through everyday clothing. Most of the sun protective materials are very lightweight and quite comfortable (not binding, clinging or scratchy). Although not all patients will experience photosensitivity, it is recommended by most doctors that patients with autoimmune disease avoid overexposure to UV light.
In addition to clothing made to be UV protective, RIT has created a substance (Sun Guard) that you wash into the clothing you already own that also provides a UV barrier.
Polartec® Fleece: Polartec® Fleece (Malden Mills) is the warmest, softest fleece available. It doesn't pill like cheaper fleeces do and it is also wonderfully light. There are many retailers using this material. Land's End probably being the best known.
Flannel sheets: Many members of ASL use high-end Flannel sheets for warmth and comfort. Some of the retailers mentioned are; Neiman's, The Company Store, Land's End.
Socks: Especially for those of us with Raynaud's or plantar fasciitis, socks and shoes can be critical for avoiding discomfort. Shoes are very much an individual preference but socks have almost universal requirements; softness, cushioning, warmth. KC has found Thorlos to be very soft and well cushioned as well as very durable. Though these are not cheap, they last longer and retain their comfort much better than ordinary socks. Thorlos are available in many stores and through many online sites.
Another sock type available is the seamless sock. A website is given below in Section V. Seams and tags can often be very uncomfortable for patients. Other support socks can be helpful for Raynaud's symptoms, Diabetic foot problems, etc.
Back/Sleep Support: Many of us find that body pillows or wraparound ("U") pillows can alleviate some of the pain that is common in SLE or Fibromyalgia. Again, some sites are listed below in Section V.
Ergonomic Work spaces: or play spaces for that matter. Any repetitive task requires comfortable positioning. (okay guys, get your minds out of the gutter!) Some find that rollerball pointing devices (rather than a mouse) is easier on them while using a PC. Others will like the ease of use of a tablet/pen interface to their PC (KCD: I use a Wacom product). Keyboards that are comfortable, voice input software/devices, and ergonomic seating can make the work environment bearable or even pleasant. For someone who has trouble typing, digital notepads similar to those used in PDAs (such as Palm Pilot) are also available.
Cosmetics and Sunblocks: The skin is often very sensitive in lupus not to mention the rashes we must contend with due to the disease and/or UV exposure. It is helpful to have a sunblock that works for you, cosmetics that do not irritate the skin, and lotions that are soothing.
KCD: A personal favorite is Shea Butter - a balm made from an African nut. It goes on a bit oily feeling but rapidly soaks in. In its cold pressed form it is usually grainy but can be melted in a microwave (don't forget to remove the foil seal - yes, KC arced her microwave) and then frozen. After melting and freezing it is solid and much smoother and still as effective. It can be rather expensive but a brand is given below in Section 5 that is very reasonable. Aside from its excellent moisturizing properties, it has virtually no smell to it all which can be important to some of us. (this of course assumes you buy a completely pure product and not one that has additives).
Various: Fallene's Total Block is preferred by a lot of lupus patients. There are various forms but the two most common are the cosmetic blend type that can be tinted to suit your skin and used as a foundation and the colorless type that goes on clear as a sunblock only. The SPF is 65.
KCD: Skinceuticals SPF 30 is good if you want sunblock and moisture without perfumes or other irritants. This is the only skinceutical product that does not have vitamins (at this time) so it is unlikely to irritate sensitive skin.
Look For The Good and Praise It!