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General : Lifestyle Adjustment: Coping With Chronic Illness
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From: MSN Nicknamepray4acure2  (Original Message)Sent: 12/16/2007 4:19 PM

 

 

 

Lifestyle Adjustment:  Coping With Chronic Illness
 
The only universally successful treatment is moderation -- a skill which must be practiced and learned.

 
Stop any activity when you BEGIN to feel fatigued.  Do not push!

 
Focus on right now.  Live in the present, not in the past or the future.

 
Pace yourself.  Plan carefully.  Make your plans flexible and tentative whenever possible.

 
Prioritize.  Attend to what's important, and let the rest go.  Don't "should" on yourself.

 
Set short-term, realistic goals, incorporating flexibility for fluctuations in health.

 
Break up all tasks into their smallest components and tackle one small step at a time.  Rest between steps.
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Consolidate household tasks; use gadgets that make chores easier.

 
Delegate some of your responsibilities.

 
If it can wait, let it go.

 
Find things to enjoy which you are still able to do.  Switch from active to passive activities, e.g. home instruction, computers, movies, creative activities such as drawing, painting, and  music.

 
Be aware of your "red alert" signals that signal an impending energy failure/relapse; then STOP and REST.

 
Beware of overdoing when you start to feel better.  Continue to pace yourself carefully -- or you'll pay the consequences.

 
Treat yourself kindly and gently.


 
PERSONAL CARE AND HEALTH CARE

 
Educate yourself about your illness and treatment options.

 
Get adequate sleep, rest and nutrition.  
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Learn to read your body, and pay attention to its signals.
Recognize that taking good care of yourself is a new and important accomplishment.

 
Create a pleasant environment with adequate ventilation, favorite colors, music and fragrance (if well tolerated).  Surround yourself with things you enjoy.

 
Keep a calendar of symptoms, medications, and major activities and a journal of your thoughts and feelings.
Exercise, if tolerated, should be non-aerobic and time-limited.  Start with stretching exercises, walking, or water exercise -- a few minutes at a time.  Monitor yourself for relapse over the next 24 to 48 hours.

 
Seek health care from experienced practitioners who are familiar with your illness and have treated a large number of patients.  Develop a productive and cooperative relationship with your health care practitioners.


 
RELATIONSHIPS

 
Enlist the support of others, those who share your illness and those who are well.

 
Ask for what you want or need.  Be specific when making requests. ></SCRIPT>

 
Educate others about your illness.

 
Respond assertively to insensitive comments from others.  

 
Encourage positive relationships and weed out the negative ones.

 
Communicate your appreciation to helpful friends and family members.

 
Seek balance in relationships, especially if you were a "giver" or "caretaker" in your pre-illness state.

 
Communicate, touch, hug, laugh, love.


 
COGNITIVE TOOLS

 
Get organized.  Routine reduces confusion.  Develop a system and stick with it.

 
Write everything down.  Use sticky notes, a whiteboard, and a daytimer.

 
Organize your medications in advance, apportioning them in a weekly medication box with divisions for days of the week and times of day.  This will help avoid confusion about whether you remembered to take your meds. ></SCRIPT>

 
Keep a calendar of symptoms, treatments, activities and events, and a general rating for how you feel each day.  This can be helpful in determining if specific therapies are helpful and as documentation for disability if necessary.

 
Keep a pad and pen next to the phone, at bedside, and in various locations around the house.

 
Keep an insurance log of claims submitted, dates, payments received, and payments you have made.

 
 
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The number of members that recommended this message. 0 recommendations  Message 2 of 3 in Discussion 
Sent: 12/16/2007 4:20 PM
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 Message 3 of 3 in Discussion 
From: MSN Nicknamepray4acure2Sent: 12/16/2007 4:26 PM
Keep a list of medical issues and questions for your next appointment.

 
You cannot deal with all of your health concerns at each medical visit.  Choose the most prominent or troublesome symptoms to deal with at each appointment.

 
If you have difficulty organizing paperwork and finances, get help from a friend or relative or a bank employee.

 
Use checks with carbon copies.  Consider having the bank store your checks.

 
Divide complex tasks into a series of very small steps.  Pace yourself in taking each step one at a time.  Do not place a time limit on accomplishing a particular task unless it is absolutely necessary.  Don't push. ></SCRIPT>

 
Take frequent rest breaks

 
Attempt tasks at your best cognitive times of day.  Don't try to perform cognitive tasks when you are "brain dead."

 
Do only one thing at a time.

 
Do not attempt cognitive tasks following activity or exertion.

 
Keep the environment simple, and eliminate extraneous distractions such as noise and clutter.

 
When reading or learning new material, stop frequently to review aloud what you have read.

 
Read, repeat, and review material over time in order to learn it well.

 
Use multiple senses to reinforce learning: Read it, write it, say it aloud, and picture it in your mind.

 
If you forget a word or name, let it go, and it will pop into your head later.  The harder you try to remember, the more the word will elude you.

 
></SCRIPT> When learning new material, frequent short study sessions are more effective than less frequent longer ones.

 
Keep your brain active by playing games, indulging in hobbies, doing crossword puzzles, memorizing short lists of words or numbers, building from simple to complex tasks over time.

 
Things that stand out are more likely to be remembered.  Use a highlighter, capital letters, different colored pens.

 
Associate new information with something already learned.  New material will be better absorbed if it can attach to a framework.

 
Take brief notes as you read or listen.  Review them later.

 
Decision-making is actually a series of tasks: defining the problem, generating possible solutions, evaluating these options, and choosing one.  Take these steps one at a time with breaks in between the steps.  Do not rush.

 
If it is difficult to read books, try short pieces, such as magazine articles, newspapers, cartoons, or comic books.  
If comprehension and attention to written materials are impaired, listen to books on tape.

 
When interacting with others, let them know if cognitive problems interfere with your ability to understand them or to respond appropriately. ></SCRIPT>

 
Ask questions when you don't understand something.  Don't even bother to be embarrassed; just do it.

 
Keep notes of points you'd like to discuss with others.  Take notes as they talk to you if you have difficulty recalling conversations.

 
Summarize and restate at the end of a conversation any the main points or decisions reached.

 
If you have difficulty communicating by telephone, outline in advance what you want to say.

 
If you are not feeling cognitively alert and capable, you do not have to answer the telephone.  Use an answering machine or voice mail, and return the call when you feel prepared to do so.

 
If you have trouble with driving, keep distractions (music, conversation) to a minimum.

 
If you have any doubts about your ability to drive safely, do not drive.

 
If you become disoriented or confused while driving, pull over, take several deep breaths, and relax until the confusion subsides.  If this occurs frequently, carry a cellular phone so you can get help if necessary. ></SCRIPT>

 
If you have significant cognitive problems, discuss possible medication options with your physician.

 
Seek the help of a cognitive psychologist or neuropsychologist to learn cognitive strategies.

 
When you begin to become fatigued at a cognitive or physical task, STOP.

 
Do not compare present cognitive functioning to pre-illness abilities.  Instead, work within the limitations you have and focus on what you CAN do.

 
Ask for help when you need it.


 
EMOTIONAL HEALTH

 
Accept your illness.  Adjust to it and learn from it.

 
Don't blame yourself (or anyone else) for your illness.

 
Practice positive, rational self-talk.

 
Seek psychological counseling as necessary for help with depression, adjustment issues, problem solving and support.
></SCRIPT>

 
Measure progress in terms of how well you take care of yourself.  Don't compare your progress to that of others.  
Learn to appreciate small pleasures.

 
Treat yourself with dignity and respect.  Your value and importance continue despite illness-imposed limitations.

 
Examine and revise your life philosophy, incorporating current learning.

 
Practice affirmations and healing imagery.

 
Write letters to local and national government officials regarding the importance of research funding.

 
Remember that you are a human being, not a "human doing."  Do not define yourself in terms of the illness, its limitations, or your state of health and achievements of the past.
Your primary responsibility is taking care of yourself.  Do it!


 
© 1998 Katrina H. Berne.  All rights reserved.
Katrina Berne, Ph.D. is a clinical psychologist and author of Chronic Fatigue Syndrome, Fibromyalgia, and other Invisible Disorders >