Lupus Site - a guide for lupus patients and their families



Coping with Lupus


Steps to coping with lupus

- become well-educated about lupus

- try to prepare for the up-and-down nature of the disease. plan alternate activities, alternate schedules or time for extra rest.

- be open with family & friends about the unpredictable pattern of lupus & 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 & depression.

- try to accept the things you cannot change rather than feeling constantly frustrated & upset over situations beyond your control.

- remember that stress, depression & pain are all closely connected & each affects the other. If you can, take steps to solve any one of these problems so as to reduce the extent of others.

- you can reduce fatigue by developing priorities & learning to pace your daily activities. Break down big, long-term goals into small, manageable steps that can be accomplished in some short amounts of time.

- if lupus has limited your hobbies & activities find new ways to use your skills.

- don't be afraid to ask for help if you need it.  Family & friends, doctors & other health care professionals, & Lupus UK/Lupus Foundation of America are all sources of help & support.

- become a partner in your healthcare by taking care to stay as healthy as possible - physically & emotionally.


The most important things are done first

Evaluate your daily routine & responsibilities in light of your current energy level.

Make a written or mental list of things to do each day.

Ask yourself these questions about your list:
  - which ones are important to me?
  - which ones have to be done?
  - how much energy & time is required to accomplish them?

Determine to spend some time on the most important one or two items each day.

Eliminate unnecessary tasks & activities - which items on your list don't really need to be done?

Delegate - which items on your list can be done by someone else?

Encourage others top be self-sufficient.

Modify or simplify the remaining tasks or activities.

Learn to say "No"!


Think ahead so that you can do what you want to in the easiest way & in the shortest time possible.

Use mental energy whenever possible to conserve physical energy.

Plan work, & work according to your plan.

Plan time for rest, relaxation, & recreation.

Arrange your work & storage areas.

Plan in advance for work to be done in each period (day, week, month, season).

Plan alternating activities: sit/stand, fast/slow, light/heavy.

Buy smart. When making purchases, consider ease of use, weight, size/shape of items, handles, & any other important considerations.

Pace yourself

Know how to balance activity & rest to make the best use of your energy.

Plan several; rest periods during the day.

A ratio of 10 minutes rest to 50 minutes activity seems to work well.

Rest before you get tired.

Avoid getting involved in activities that tax you beyond your endurance.

Divide large jobs into small steps.

Work at a rate comfortable to you.

Avoid the need to rush with better planning.

We must pace ourselves properly in order to have energy to carry out our priorities & plans.




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