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COPING STRATEGIES OF
LONG TERM
PATIENTS
by Maggie McKenzieII, M.A.: Fred
Friedberg, PH.D.; Robert Fontanetta, Lucy Dechene, PH.D.(Partial List. Not
in order of importance). This was taken from the MEssenger dated October
1995.
* Stop immediately when fatigued
*
Nap or rest 3-4 hours even on a good day
* I work a little, rest a
little, etc.
* When I become very tired I've learned I need to give
into it
* Have a comfortable place to rest outside and enjoy
nature
* Avoid stress
* I refuse to argue about things - drains my
energy
* Start Xmas shopping in March
* Give other family members
more responsibilities
* Learn to build a new life
* Read uplifting,
spiritual books/watch funny TV & stories or movies
* Phone others
who are ill and try to help them know they're not alone
* Conserve
energy for important things (so) as to not to miss out on life
* Humor,
humor and more humor
* When making plans always try to take my variable
health into consideration
* Sometimes I weigh if the energy spent on an
activity or social event is worth the suffering
afterwards
*
Remember always that relationships get Top priority when energy is
low
* Don't waste energy explaining your condition to skeptics
* Try
to have piece of mind so that you can go through life without everyone
understanding
* Avoid people who stress me
* Find rewarding things
you can do to bolster self image/esteem and sense of control
*
Accepting, trusting, loving yourself no matter what
* Find escapes that
work for you (movies, books, special friends, etc.)
* Avoid contact
with people that have attitudes of "you could get better if you
really.."
including your family
* Make lists/ one or two priorities
a day. If I do them I feel better and things aren't such a mess
* Try
to remember bad days will pass and I will feel better for some (unknown)
period of time
* Change my priorities
* Don't waste time worrying
about what could have been
* Simplify, lower, limit goals
* Feel the
pain rather than take pills or distract myself
* What is, is
enough
* Be in the moment...It contains all life
* Ask what is the
lesson? What is the purpose?
* Phone networking with PWCs for
support
* Allow myself to be good to myself
* Try to involve myself
in helping others
* Unload emotionally or physically drained
friendships, relationships
* Apply for rental assistance
* Healthy
life style, strict diet
* Live with animals
* Optimize use of
appliances
* Hire a cleaning lady
* Use stick-ons in purse so each
time I open purse I'm reminded of what to do
* Use speaker phone if
arms too weak
* If I have left a message for someone to return my call,
I leave that person's name circled on
a pad with what I'd called
about, near the phone
* I get washed and dressed and go out every day
even if just to drive to video store
* Keep a positive attitude
*
Pace myself - engage in fun, pleasurable activities as much as
possible
* Keep busy by learning new things - correspondence school
* Yoga, sunshine, diet, sleep and no stress
* Take charge - doctors
give advice, and I make the decisions
* When spent, use wheelchair to
conserve energy
* Evoke good memories, triumphs and laughter
* Use
light weight tools and cooking utensils
* Diet, nutrition, relaxation
tapes
* Practice optimism (some call this denial)
* Break all tasks
into pieces and tackle one only at a time - Drop out of periods of time
(let your self crash)
* Keep a sense of humor
* Let the house be
dirty, order a pizza or use freezer dinners
* Don't make a fulfilling
life contingent upon being well
* Get groceries delivered
*
Write...often in prayer form
* Accept I have an illness that prevents
me from being my once energetic self
* Stop feeling guilty for what I
can't do, and mentally or verbally praise myself for what I do
get
done
* I dream about a cure/treatment
* Do something
everyday, ie. dishes one day, dust one day, wash clothes another,
etc.
* Exercise
* Find levels of exercise I can tolerate and don't
exceed it
* No unnecessary exercise
* Mild exercise - slow
swimming
* Don't go beyond the confines of the box your life is in
*
Listen to your body
* Get on computer and learn everything I can about
my illness
* Don't forget to say your prayers
* Ask for help when
you need it
* Say "No"
* Be smart, if not smarter than your
doctor
* Try not to compare yourself to healthy people
* Use a
scooter, a (disabled) parking permit, and do a lot by phone
* I always
look forward to tomorrow
* I do crossword puzzles to keep my mind
reasonably sharp"
* Shop at 6 am - grocer and drug store - no line
*
Firmly believe I have value as a human being even though ill
* I'm
never without psychotherapy
* Acknowledge my illness, quit
pretending
* Support group and giving and receiving help, donations for
research
* Develop my own Physical Therapy program to help pain
(regular ones make it worse)
* Do the things you have to get done
during the time you have more energy even if they aren't
required until
later (lunch, dinner, etc.)
* Simplify my life to whatever degree is
possible
* Try to keep active just this side of my relapse "electric
fence"
* Don't discuss my illness with anyone but my doctor, PWCs, my
wife/husband
- former coworkers, friends just don't believe I have an
illness - trying to explain CFIDS makes me angry and humiliated
* Have
tried to let fo of MOST analretentive, perfectionist tendencies
* Pray
to God
* Accept that I'm OK anyway, eve if I can't drive or listen or
whatever, I'm OK
* Don't give up all my aspirations and interests from
before I developed M.E.
* Saturate my life with beautiful people and
things and eliminate critical judgemental people
and their twisted
thinking
* Live one day at a time
* Give books, videos, etc. along
with info on M.E./CFS to my doctor and any other doctors who
will read
- also congress persons, etc.
* Always plan to do fun things even if
need to cancel
* Use medications that help without guilt
* For
falling barometric pressure, brain fog and fatigue, alcohol improves
symptoms - believe it
increases blood flow to brain. (However this
cannot be used regularly as it would lead to other
problems)
* Just
scream sometimes
* Develop acceptance of my condition, limitations and
their affect on my life - not in terms of
defeat, but in terms of a
having different way of living and functioning as best I can within
these differences
* Accept the reality of my mostly unpredicable
level of function with humor and recognize my
desire that I be other
than what I am whenever it pops up (always frustrated)
* I keep
informed about FM/CFIDS and consider my options
* At first sign of
relapse - rest until symptoms abate
* Self-hypnosis - to beat the pains
in joints and muscles
* Find the small joys of life
(From the
International Coalition of Long Term CFIDS/M.E.
Patients)
Lady Barb has made many of these articles
interactive and I hope she has done so with this as many of us have come
up with our own coping strategies.
Hey, if you know something
that's helped you....share it so that other CFS people can have the
opportunity to use it as well. If she hasn't done it to this
article....please e-mail me with your coping strategies.
The
Shadow Warrior had bought Lady Barb a tape recorder to help her cope and
she thinks this is great because now she doesn't loose all the papers she
makes notes on.
Well, now I have one because to shut down your
mind at night...you must get rid of the thoughts....I too, was writing
them down and loosing the papers, so the tape recorder was a great
suggestion.
You can find the Lady Barb and the Shadow Warrior and
their many wonderful causes by clicking on their site name:
Farbsite Click on E-mail box and add your Coping
Stategies
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leaving after this page, please sign my guestbook.
Thanks!!
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