 Explaining Fatigue to Your Doctor In a couple of hours I'm headed to my doctor to try and explain
how debilitating my fatigue is. I've been thinking about how to explain this kind of fatigue and I find there are no words
to describe it that would help others to understand who have never experienced it. Fatigue is a wrong word. I use to tell
my doctors I was weak because, to me, the word fatigue just didn't accurately describe what I felt; but they
would tell me to squeeze their hand, which I did, and they'd say I wasn't weak. The fact is, the word weakness fits perfectly
some of the time and the word fatigue is the right description, some of the time. But when it comes to the weakness and fatigue
that is debilitating there is no one word to describe it. This type of "fatigue"
may include a sorta nauseated, stiff - pulling - electrifying tingling muscle aching, pulling thing, a dullness of thinking
along with hypersensitivity to stimulus, everything is a hugh undertaking due to mind and body weakness, your body is pulled
down by the feeling of heavy weights, may or may not have depression, and an overall fluish kind of feeling, with or
without the feeling of fever. Now, what is the right word to describe this kind of fatigue?
Well, here I am two days after my appointment with the
doctor. He asked me to describe the fatigue. Rather than telling my limitations I tried to explain what I felt like and this
was a mistake; I was at a loss to know what to say. I should have stuck with how the fatigue limits me. I had planned to do
that and when he asked the question, all my planning was for nothing; it never once came into my mind to explain my life,
rather than the fatigue. Fortunately, this doctor didn't hold it against me he asked me questions to get the response he was
looking for. Take it from me, the next time you are asked to explain fatigue it's
much easier to explain limitations than to try and come up with a word(s) that don't exist.
-Pat
"Fatigue for those with chronic illnesses, however, can actually be disabling. This fatigue is relentless.
Overexercise or overwork does not cause it and bed rest frequently fails to relieve it. It appears regardless of activity
or inactivity, happiness or sadness. It simply exists in and of itself, and no medication, positive thought, or rest can relieve
it. Mona, a real estate agent with invisible
chronic illness describes the waxing and waning of her illness. When she goes into remission she says, 'I feel like a part
of the healthy, normal world. I do what I want to do when I want to do it. I begin to think that maybe I'm really not ill.
I even feel a little phony about being considered sick. Then two days later I can't go to church because I can't climb the
steps.'' -selected off internet
. I read the following off a blog from a young woman named Mary who has M.E.
(chronic fatigue syndrome). Her analogy of chronic illness to living with a gorilla is both imaginative and spot-on. You don't
have to have M.E. to have this story fit... any chronic illnesses will do. Enjoy! pg
a gorilla in
your house
. Acquiring a disability is a bit like getting home to find there's a gorilla in your house. You
contact the approved and official channels to get rid of infestations of wild animals (in this case, the NHS) and they umm
and aah and suck air in through their teeth before saying something roughly equivalent to "what you've got 'ere,
mate, is a gorilla, and there ain't really a lot what we can do about them, see..." before sending you back home
to the gorilla's waiting arms.
The gorilla in your house will cause problems in every part of your life. Your
spouse may decide that (s)he can't deal with the gorilla, and leave. Your boss may get upset that you've brought the
gorilla to work with you and it's disrupting your colleagues, who don't know how to deal with gorillas. You're
arriving for work wearing a suit the gorilla has slept on. Some days you don't turn up at all because at the last minute,
the gorilla has decided to barricade you into the bathroom or sit on you so you can't get out of bed. Your friends will
get put off because when you see them - which isn't often, because they don't want to come to your house for
fear of the gorilla and the gorilla won't always let you out - your only topic of conversation is this gorilla and the
devastation it is causing.
There are three major approaches to the gorilla in your house.
One is to
ignore it and hope it goes away. This is unlikely to work. A 300-lb gorilla will sleep where he likes, and if that's on
top of you, it will have an effect on you.
Another is to try and force the gorilla out, wrestling constantly
with it, spending all your time fighting it. This is often a losing battle. Some choose to give all their money to people
who will come and wave crystals at the gorilla, from a safe distance of course. This also tends to be a losing battle. However,
every so often, one in a hundred gorillas will get bored and wander off. The crystal-wavers and gorilla-wrestlers will claim
victory, and tell the media that it's a massive breakthrough in gorilla-control, and that the 99 other gorilla-wrestlers
just aren't doing it right, due to sloppy thinking or lack of committment. The 99 other gorilla-wrestlers won't have
the time or energy to argue.
I have known people spend the best years of their life and tens of thousands of pounds
trying to force their gorillas to go away. The tragedy is that even if it does wander off for a while, they won't get
their pre-gorilla lives back. They'll be older, skint, exhausted, and constantly afraid that the gorilla may well come
back.
The third way to deal with the gorilla in your house is to accept it, tame it, and make it part of your life.
Figure out a way to calm your gorilla down. Teach it how to sit still until you are able to take it places with you without
it making a scene. Find out how to equip your home with gorilla-friendly furnishings and appliances. Negotiate with your boss
about ways to accomodate, or even make use of, your gorilla. Meet other people who live with gorillas and enjoy having something
in common, and share gorilla-taming tips.
People get really upset about this and throw around accusations of "giving
up" and "not even trying". They even suggest that you enjoy having a gorilla around because of the attention
it gets you (while ignoring the massive mess in your bedroom every morning and night, not to mention your weekly bill
for bananas). The best way to deal with these people is to smile and remind yourself that one day, they too will have a gorilla
in their house.
(slighty edited - changed a couple of words. pg)
Fatigue Facts: a Fatigue is invisible.
a
Fatigue can go anywhere from annoying to disabling.
a Degrees of fatigue can change throughout
the day.
a Fatigue is there 24/7 to some degree.
a "Feeling
great" doesn't mean the fatigue is gone, it has just lessened.
a "Looking good"
doesn't mean the fatigue is gone. It's just invisible.
a Fatigue that comes with chronic
illness can not be compared with "normals" who experience fatigue from overdoing. It has a different feel and is
almost impossible to describe.
a Heat and summertime can make some people's fatigue worse
as heat slows down nerve conduction.
a A nap or taking a break doesn't get rid of the fatigue.
a Added fatigue can be the result of overdoing, but not always.
a
Fatigue is never wanted, enjoyed, and if we could get rid of it we would.
a Fatigue sometimes
gives the impression to others that we lack desire, drive, and we are "just depressed." Fatigue deceives, it hides
its true nature.
a Fatigue can affect thinking and emotions as energy is needed for every
part of us to work correctly: physically, mentally and emotionally.
The following are thoughts I
selected off the internet
from those living with chronic illness :
Fatigue is a monumental
problem. It's hard to describe the overwhelming and exhausting fatigue I can feel. It's like I moved furniture all
day, carried a 100-pound backpack up the side of a mountain and rowed a boat across the ocean…and all I've done
is gotten dressed.
I'm not exhausted all the time. But when
that fatigue hits, it's like hitting a wall. There is no reserve. It's depressing to have no control over how tired
I am regardless of how much sleep I've had. Sometimes I say no to your offers, like "let's take in a movie"
because I don't want to let you down at the last minute. Thank you for understanding why I cancel or renege on plans.
"I think the most difficult
thing to cope with is the absolute dichotomy between how you look and how you feel."
"You're here!
You must finally be better." This fallacy can be maddening. For those with chronic illness, there is no cure, and hearing
a comment such as this one proves that the illness is not understood—and that no effort was made to understand it.
Impatient people try to rush people with disabilities through
life. A man who was behind me in the grocery line one day tried to unload my cart for me. The gesture would have been welcome
if it had been rooted in kindness, but it was obvious I was moving too slow for him in this fast-paced world we live in.
For those of us living with a chronic illness, there can be many
ups and downs. Nothing is as it once was, and "normal" no longer exists in our vocabulary. Maybe this presentation
will help you to redefine the term "normal" and learn to live with your illness as best as you can.
If
you've ever been on a walk in the woods, you know how varied the path can be — level areas covered with soft pine needles
can give way to rocky descents or short climbs that require careful footing. In some ways, living with chronic illness is
very much like going on a walk in the woods. You're never quite certain what lies ahead of you. If you live with a chronic
condition, how you view the path you're on and decide to manage your day-to-day situations can greatly affect your quality
of life.
TODAY I WILL CRY
I make time for tears when it all gets too much,
When the pain is too bad for too long
and such.
Today I will cry.
I will let it all out in a big flood of tears,
I'll rid
myself of all these questions and fears.
Today I will cry.
I'm not pretending to be brave and
strong,
Today I can't take it, it's gone on too long.
Today I will cry.
God gave
me the power to see this flare through,
A relief valve of sorts, it's what I will do.
Today I
will cry.
Parnell Bailey visited an orange grove where
an irrigation pump had broken down. The season was unusually dry and some of the trees were beginning to die for lack of water.
The man giving the tour then took Bailey to his own orchard where irrigation was used sparingly. "These trees could go
without rain for another 2 weeks," he said. "You see, when they were young, I frequently kept water from them. This
hardship caused them to send their roots deeper into the soil in search of moisture. Now mine are the deepest-rooted trees
in the area. While others are being scorched by the sun, these are finding moisture at a greater depth."
A lecturer
was giving a talk to students on stress management. He raised a glass of water and asked the audience, "How heavy do
you think this glass of water is?" The students’ answers ranged from 20 grams to 500 grams. The lecturer
replied, " The absolute weight doesn’t matter. What matters is how long you hold it. If I hold the cup for a minute,
I would be Ok. If I hold it for an hour, I will have an ache in my right arm. If I hold it for one day, you will have to call
an ambulance. The cup of water is the exact same weight, but the longer I hold it, the heavier it feels and the more damage
it can do to me."
IS THIS SUFFERING WASTED?
by Homer Hailey
Among life's most baffling problems, there are times when
none is more perplexing than that of suffering. "Why should this have come to me?" is so often asked. Then, after
much anxiety and questioning one still does not have the answer to the "Why?" From thence we turn to the question
of "What?" If I cannot know "why," then what use shall I make of it? Surely, in a world of order, governed
by a God of love, there must be some use which suffering may serve. It cannot be that God allows suffering with no purpose
to be accomplished by it. Surely my pain, whether mental, or physical, or in the deep recesses of conscience, is not to be
wasted. KNOWLEDGE OF GOD.
For the past two months I have spent much time with "a perfect and upright man, a man that feared God and turned away
from evil." This man had been brought to the brink of death as he drank the full of calamity and physical suffering.
Being a man who feared God and enjoyed all the bounty of this life, he could not understand why he should be called to suffer
as he did. In my association with him I learned much about suffering. Among other things I learned something of the use to
be made of it. The man's name is Job. Every sufferer should meet and become acquainted with him. Through suffering Job came to know God as he had never known Him before. At times he thought God was cruel to him;
at other times he would conclude there was no moral government in the universe -- God just did not care. But throughout his
experience his faith was deepening and expanding. Finally Job was able to say, "I had heard of thee by the hearing of
the ear; but now mine eye seeth thee: wherefore I abhor myself, and repent in dust and ashes" Job 42:5. SUFFERING HUMBLES US. Job was humbled
by his experience. He had learned to trust when he could not see. He came to realize his own ignorance of God's great
and mysterious universe. He came also to know God and of His concern for the sufferer as he could never have learned except
through experience. He now knew what it was to walk by faith and not by sight. Here is one of the greatest uses of suffering. To the man who will trust it brings a knowledge and understanding
of God which can be acquired in no other way - knowledge by experience. God does care. He was intensely interested in Job
from the first, and so in us. He is a God of purpose and of order, as revealed throughout His universe. And even though man
suffers, God is not indifferent, but uses the suffering to bring man closer to Himself. Job came to know God, not as a tyrant,
but as man's friend. So may you and I. COMFORT
OF OTHERS. Suffering may be used to teach one a deeper sympathy and compassion for others. It should teach
us to share the experiences of another, to encourage and inspire as we could not have done before our own experience. Though
Paul was writing of Christians suffering for the cause of Christ, his statement my serve in any suffering: "Blessed be
the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort; who comforteth us in all our affliction,
that we may be able to comfort them that are in any affliction, through the comfort wherewith we ourselves are comforted"
2 Cor. 1:3,4. Through one's own experience is suffering,
and the comfort he receives from God, he is able to comfort as can no one who has not himself experienced such affliction
and such comfort. He has learned through experience, and can now teach and help through that which he knows. Let the sufferer
make this use of his suffering. PATIENCE
AND HOPE. Another great use of suffering as presented in the Scripture is that of the development of patience
and hope. Paul rejoiced in hope of the glory of God, but he did not stop there. "We also rejoice in our tribulations,"
he continues, "knowing that tribulation worketh steadfastness; and steadfastness, approvedness; and approvedness, hope;
and hope putteth not to shame" Rom. 5:3-5. As one overcomes wave after wave of tribulation, adversity, suffering and
pain, he grows stronger in his own steadfastness, and his hope flashes more gloriously. Trials, and also pain or suffering, may become tests of faith. James writes, "Count it all joy, my brethren,
when ye fall into manifold trials; knowing that the proving of your faith worketh patience" Jas. 1:2,3. Patience is not a fatalistic submission to "come what may"; but it is
a steadfast enduring, waiting, letting the Lord work out the end. James himself so explains it: "Behold, we call them
blessed that endured: ye have heard of the patience of Job, and have seen the end of the Lord, how that the Lord is full of
pity, and merciful" Jas. 5:11. Job was doubly rich at the end of his experience: he had not only his abundance of material
wealth, but a richness of faith and knowledge of God. Then
there is that suffering which is vicarious: suffering on behalf of and for another. Christ's sufferings were such. So
may your suffering be used as the means of bringing Christ and the Spirit of the Christ to the heart and life of another.
Your own faith and steadfastness may teach by example where one will not listen by the ear. Shall my suffering be wasted? By no means! "We know that to them that love God all things work together for
good, even to them that are called according to his purpose" Rom. 8:28. Let God use suffering in the life of us all as
a means of bringing us to know Him as never before. Let Him use it to teach us faith, humility, steadfastness, hope. Through
it let us learn that we can trust when we cannot know; we can walk when we cannot see. Faith is greater than sight, and loving
trust than scientific knowledge. Let us thank God for His providential use of suffering, as He uses it to make heaven's
glory more brilliant, and earth's sojourn one of humble trust.
Out of the Darkness
Out of the
dark forbidding soil
The pure white lilies grow.
Out of the black and murky clouds,
Descends the stainless
snow.
Out of the crawling earth-bound worm
A butterfly is born.
Out of the somber shrouded night,
Behold!
A golden morn!
Out of the pain and stress of life,
The peace of God pours down.
Out of the nails -- the spear
-- the cross,
Redemption -- and a crown!
Just to reinforce brother
Hailey's thoughts, if you were on the bed of affliction, suffering terribly, other than the Lord Himself, what Bible character
would you like to come sit by your bed? I would pick Job, because of his experience and gaining a greater understanding of
God, Job would say and do just what I needed. He gained by his suffering. Have you? Do you use what you have gained for
the good of others?
How Important
is a chronically ill woman to a congregation? You may not feel you don't have anything to offer, but... Do you know a "get well" card sent by you to a sick sister or brother means so much more because they know
you understand? Do you know that when you are able to meet with the saints your smile lifts someone's
spirits? Do you know when you keep persevering someone is using you for their inspiration to
persevere? When you pray for others you know there are physical, emotional and spiritual needs
and you have a better understanding of these specific needs to mention in your prayer. Do you
know when you are sympathetic and caring with others they are more likely to share their feelings with you, knowing you understand?
Do you know you may be able to help others in the congregation understand a Christian's need
because you've been there? Do you know that your hug means so much to someone who is suffering?
___________________________________________ Someone Needs You Someone needs your smile today.
Your hug, your listening ear.
Someone needs encouragement
And gentle words of cheer.
Someone
needs your helping hand,
A letter...or what's more,
Someone needs your cheerfulness
To make their spirits soar.
Someone needs affection
When they are
feeling blue.
Listen, someone's calling,
For
a special friend like you. -unknown
OUR HOPE SEPTEMBER 2006
article first appeared in Christianity Magazine/October 1985
Living With Handicaps
or Loss of Health
Irvin Himmel
How
can one adjust to living with a handicap such as blindness, being paralyzed due to a spinal injury, or complete loss of speech?
What happens after the doctor looks one squarely in the eye and says with a soft, yet firm, tone of voice, "You have
only about a year in which to live"? People react differently to serious handicaps and the loss of health. Some panic.
Some commit suicide. Some are depressed beyond description. Others remain cheerful and display a remarkably good attitude.
Here are some suggestions which I trust may be helpful
to all who are handicapped or who have lost good health:
FACE REALITY: If you have a physical
disadvantage, whether from birth or in consequence of disease, accident, or other causes, you are not alone. Thousands of
people have handicaps. If you have a health problem that is incurable, so do many other. If you have a terminal illness, stop
and consider that millions of people have died because of disease. Is terminal illness worse than being hurled into the great
beyond without warning? Perhaps God has allowed you to be warned of the approach of death for a reason.
Be realistic. Accept what is beyond your power to change. Do the best you can with what you have in whatever time you have
remaining.
TRUST
IN GOD:The heavenly Father knows more about what is good for us and what is bad for us than we know
ourselves. Handicapped people and unhealthy people have vivid reminders of their dependence on God. We cannot be strong spiritually
until we face up to our human weaknesses. When Paul besought the Lord to remove his "thorn in the flesh," the Lord
said, "My grace is sufficient for thee: for My strength is made perfect in weakness." Realizing this truth, Paul
said, "Therefore I take pleasure in infirmities...for when I am weak, then am I strong" (2 Cor. 12:9-10).
Many of us have correct answers to doctrinal questons but lack sustaining faith in the face of adversity. Let us learn to
feel as David did in saying, "Yea, though I walk through the valley of the shadow of death, I will fear no evil: for
thou art with me; thy rod and thy staff they comfort me" (Psalm 23:4).
DO NOT BE BITTER: A disagreeable, harsh, biting, distasteful
attitude will make matters worse. Anyone who has become bitter over personal loses should be reminded that Paul said, "Let
all bitterness...be put away from you" (Eph. 4:31). Bitterness only serves to make one sour, crabby and repulsive. A
rotten, rebellious attitude will not restore health nor prevent death.
The statistics are that one out of one dies! A dear sister who is a victim of cancer said in my presence, "Everyone
has to die sometime." Her serenity and composure through months of suffering have been an inspiration to others.
AVOID SELF-PITY.
There is one thing that is worse than a handicap or loss of health, and that is a morbid preoccupation with feeling sorry
for self. "The spirit of man will sustain his infirmity; but a wounded spirit who can bear?" (Prov. 18:14). Self-pity
wounds the spirit. Physical loss make life hard; inward loss makes life unbearable.
Let the attention be centered on something constructive and beneficial. Brooding over adversity will not turn it into joy.
Dwelling on things pleasant, being thankful, and letting the peace of God rule in the heart will give joy in spite of physical
losses.
FOCUS ON
THINGS ABOVE. This world is not everything. This earthly pilgrimage often is difficult and it will reach an
end. Therefore, "Set your affection on things above, not on things on the earth" (Col. 3:2).
In another passage, Paul wrote: "For I reckon that the sufferings of this present time are not worthy to be compared
with the glory which shall be revealed in us" (Rom. 8:18). Let us "Look not at the things which are seen, but at
the things which are not seen. For the things which are seen are temporary, but the things that are not seen are eternal"
(2 Cor. 4:18).
It won't be very long until all our human
frailties will cease to concern us. In heaven there will be no sickness, no sorrow, no dying. In the resurrection we hsall
be given glorified spirutal bodies (Phil. 3:20-21). The hope of these better things above should flood our souls. Strong faith
and genuine expectation of what God has promised will soothe and sustain.
Just like the various colors of the birds, above, chronic
illness comes in many shades. One day may begin as bright blue with tints of sunny yellow and by mid-day the colors have been
dulled by a gray wash. Variations of symptoms make for a continual adjustment of thoughts, emotions and lifestyle. This constant
modification of plans involves all who are part of the life of the chronically ill person, not just the one who is affected
by the disease. Because of this ever-changing pallet of colors, it is
of utmost importance for the entire family and friends of the ill to learn to be flexible. This takes acceptance of the situation,
communication of the desires and needs of the ill as well as the needs of family and friends, and considering the reality
of what is possible and what isn't. It is knowing that plans will change and being able to adjust to these changes in
the best way possible. Living with chronic illness means disappointments
will come and that means sadness, not only with the ill but with their mates, children, parents, and friends. The ill one
will feel guilty for interrupting plans of their loved ones, and while this is normal, it does not have to be necessary for
they and their loves ones need to know they can not help their situation. Feeling guilty and feeling sad are two entirely
different things. Guilt should not be placed on the ill, nor should the ill one feel guilty, but accepting sadness and the
disappointment of everyone involved is good to recognize and not hide. Hidden emotions, at times, have a way of coming out
in inappropriate ways and inappropriate times. The sadness and disappointment
that comes when plans have to change should not be coddled, but rather they can be recognized and then move on, knowing that,
perhaps, next time plans can be followed through. And if not, then go to the "oh well" frame of mind that we live
the best we can with disappointments, knowing in the overall scheme of life, it wasn't all that important. Love, patience,
communication, trust and acceptance by all who are involved with this illness, this intruder, is an absolute necessity in
living productively and peacefully with chronic illness. -Pat
ARE
YOU A PRODUCTIVE MEMBER OF SOCIETY?
by Pat Gates
I recently read the following: Often people are described by their profession; like in game or talk shows, people
are introduced as, "this is Joe, a teacher from California." We are obsessed with what people “do” for
a living. Sure it is interesting to find out what careers people are in; but it is sad when we define ourselves by our careers
and not by our character. We get so wrapped up in "who
we are" being defined by "what we do" that it is no wonder why so many who become disabled also become insecure
and feel like their lives no longer have importance. Laura, a woman with Interstitial Cystitis wrote, "I was a RN, but
now am nothing, worthless and useless, homebound and on Social Security" (IDA Guestbook, August, 2000). How sad that
our very beings, character and purpose in life are supposedly depicted by what kind of work we are in and how successful we
are at it! Frequently, at a funeral you will hear of
people describing their loved one as a "productive member of society." But what if the person were not very productive?
What if the person were bedridden or physically disabled? How then would we measure their character and worth as a human who
takes up space on this planet? Would their life be as important or impacting on others? Could they have had a meaning or purpose,
even though they were unable to work? There seems to
be no room here for people who cannot pull their own weight. People work hard and they get angry to think that others are
drawing taxpayers’ money for doing nothing. They feel that, "if I have to work, so should you." But, they
do not realize that their being able to work is a privilege and a blessing, not a curse. In fact, most people with disabilities
are not lazy; they want to work! --selected The writing above is so true and chronically ill and disabled Christians get caught up in
this, feeling ashamed they are not working and not being "productive" in society. I do understand this, as I have
family members who can no longer work and also while I, myself, did not work outside the home before I became ill, I still
felt embarrassed recently when I was asked by someone I hadn't seen in a long time, what it was I was doing with my life.
I sure wasn't going to say I've been sitting in a recliner for about a month now and only get up to fix meals and
do light housekeeping (I've been in a big flareup); I did not want to look lazy. Work
is good for mankind and this is what God wanted for man. It keeps the mind and body fit and it's satisfying to take care
of one's needs and the needs of loved ones. However, is our identity of who we are dependent on our position in the workplace
and in society? The One who first created the idea for man to work is God and He teaches us to support ourselves and our families,
if it is within our ability. However, it is not how He tells us to define ourselves and how to measure our identity and worth
in this world. IN
CHRIST, WE CAN BE PRODUCTIVE MEMBERS OF SOCIETY WHETHER WE ARE OLD OR YOUNG, HEALTHY OR DISABLED, RICH OR POOR. IN CHRIST, IS OUR IDENTITY: • We are part of a chosen generation, a royal priesthood, a holy nation, God's
own special people who are to proclaim the praises of God. (1 Peter 2:9) •
We are the salt of the earth, the light to the world, a city set on a hill. (Matthew 5:12-13) •
We are a branch of the True Vine and we are to bear much fruit. (John 15:1-2) •
We are sons of the light and sons of day and we are to be watchful and sober. (1 Thessalonians 5:5-6) •
We are children of God and should be imitators of Him. (Ephesians 5:1) •
We are servants of righteousness (Romans 6:18) and we serve the Lord Christ (Colossians 3:24) •
We are beloved of God and we should love each other. (1 John 4:11) •
We are world conquerors by our faith and belief that Jesus is the Son of God. (1 John 5:1-5) •
We are soldiers who fight Satan. (Ephesians 6:10-17) • We are priest
who offer up the sacrifices of the fruit of praise to God, giving thanks to His name, doing good and sharing. (James 13:15-16) • We are sojourners as far as this earth and its lusts is concerned (1 Peter 2:11),
however... • We (Gentiles) are no longer strangers and sojourners,
but citizens of the household of God. (Ephesians 2:19) • We are
part of a holy temple, the dwelling place of God in the Spirit (Ephesians 2:21-22) •
We are fellow workers whose names are written in the Book of Life. (Philippians 4:3) All
of us are productive and have identity in Christ. Tell me one description in the list above that can not be the identity of
a Christian who is homebound, bedbound, in a nursing home, in a wheelchair, or in a hospital bed. God is the Creator of all
that is good for mankind and, in Him, we are who we are. Our Lord gave us our identity when His own body was broken for us
for, in Him, when we are weak, we are strong (2 Corinthians 13:9).
Helping The Sick
J.
David Powlas
INTRODUCTION:
During our assemblies
for worship and/or Bible study, the announcements usually include the names of members who are sick. Some of the folks
whose names are written on the “prayer board” (the whiteboard on the back wall of this building) are also sick.
Do you and I take any kind of follow-up action after we hear those announcements and look at that board? In other words,
what do we actually do to help the sick? This lesson will point out some scriptural teachings and practical suggestions
about helping the sick.
DISCUSSION:
1. Scriptural Teachings -
a. We should pray for
the sick - James 5:14-16; 3 John 1-2
b. We should sympathize and empathize with the sick - Luke 6:31; 1 Corinthians 12:26-27; Romans 12:15
c.
We should comfort and encourage the sick - 2 Corinthians 1:3-4; Job 2:11-13 (This can
be done via e-mail, regular mail, telephone, and/or personal visit!)
d. We will be judged
according to whether we did or did not help the sick - Matthew 25:31-46
2. Practical Suggestions -
a. When visiting the sick, do not worry/fret about what you should say to them. (Your presence can be
comforting/encouraging to the sick even if you say very few words!)
b. When writing and/or speaking to the sick, do not tell them about all of your problems. (They
do not need any more “burdens” added to their present “load” of concerns!)
c.
Do not ask the sick: “Is there anything that you need for me to get or to do for you?” -- unless
you seriously intend to supply or to do what is needed. (To ask such a question with no real interest in their needs
is hypocrisy!)
CONCLUSION:
What happens after we learn (via the
announcements and the “prayer board”) who is sick? All of us probably intend to do something to help them;
but, do we follow up on our good intentions? What are you and I actually doing to help our brethren and others who are
sick? Are we willing to be judged according to those actions (or lack of them)?
Weariness:
Sometimes we get just plain weary. I know I do. Its more than the crushing fatigue and heaviness
the illness causes. Its a weariness of spirit. I get so tired of having to struggle just to make it through the day. I get
tired of dealing with 'illness issues', doctors and just plain hearing about illness. Yet its never far from my mind
because there it is before my face where I have to deal with it. Some symptoms are pretty hard to ignore like cognitive ones.
I get weary.
"Praise be to the Lord, Who has given rest
to his people Israel just as he promised. Not one word has failed of all the good promised he gave through his servant Moses.
May the Lord our God be with us as he was with our fathers; may he never leave or forsake us. May he turn our hearts to him,
to walk in all his ways and to keep the commands, decrees and regulations he gave our fathers. And may these words of mine,
which I have prayed before the Lord, be near to the Lord our God day and night, that he may uphold the cause of his servant
and the cause of his people Israel according to each day's need, so that all the peoples of the earth may know that there
is no other. But your hearts must be fully committed to the Lord our God, to live by his decrees and obey his commands, as
at this time." 1 Kings 8 : 56 - 61
-selected
Check out this thought by George Matheson, a blind 19th c.
Scottish minister: What a strange cure for mental weariness…I
should have expected an invitation to mental rest….The weariness of the body is cured by slumber, but the weariness
of the mind can be cured only by stimulus. He said this as he was meditating on Hebrews 12:3 (Consider him who endured such opposition from sinful men, so that
you will not grow weary and lose heart). He suggests that an active meditational life on the work of Jesus will help promote
rest and protect from weariness. -selected
"6"
"I actually feel human today. On a Fibro scale of 1 to 10 - I'm
having a "6" day, which ain't too bad, all things considered."
Cindy Granke, who lives with
fibromyalgia, wrote me this. Now for all you "normals" out there, on a scale of 1 to 10 (with 10 being the worst
you ever felt and 1 being the best), would you consider yourself having a good day if you were "6" on the scale?
Probably not. But such is the chronically ill: Better days are more appreciated and there is a new normal that develops. We
learn, to a degree, how to function with weakness and pain, because if we don't do what needs to be done during
the "6" days, it may not get done the next day. This doesn't mean we feel the pain and weakness less
than what a healthy person would, what it means is that we have learned we can't afford to always sit or lie
down when we are at a "6" or "7" or even "8" (sometimes) because tomorrow we
may be a "10".
Also, this forcing of the body to function during the "6" times, often throws
the chronically ill into the disabling "8" "9" and "10" days. But, we gotta do what we
can do when we can do it. This is absolutely necessary to understand in order not to judge the chronically ill when you
see us out and about. We may be in that "6" range where it is possible to get out and function, but by
the time we get home the energy expended has put our body into a "9" or "10".
-Pat
She Married a Tomato
by Pat Gates
"I answered the phone and the caller asked for my wife.
I replied: 'She's at work but I can take a message as I'm her tomato.'"
If you're
trying to figure out if you are missing the man's joke, don't bother, there isn't one there. This is an actual
quote from a man involved in a support group, and, you don't have to guess that this man has Alzheimer's, he
doesn't. He's well aware of who he is and what a tomato is and he understands fully that he is not a tomato. Although
he caught himself saying this, most of the time he probably wouldn't have realized he called himself his wife's
"tomato" instead of "husband." You see, he has brain fog or fibro fog, due to having Fibromyalgia.
Before I continue, the fog isn't just confined to people with fibomyalgia, people with other autoimmune diseases,
as well as some neurological illnesses, will experience this. There is also "chemo fog" and many of us
are all too aware of a "senior moment," that menopause contributes to. And while those of us often laugh about ourselves
and tell our fog stories (which are indeed funny sometimes), the fog is actually one of the most distressing symptoms we deal
with. This fog can just be bothersome at times, or it can be quite disabling. Verbal fluency, long-term and short-term memory, and working memory (how much information you can
use, manipulate and store at one time) is affected.
Years ago they did research with people with MS and found
the information goes in but retrieving it was the problem. After testing those with fibromyalgia, they found the people with Fibromyalgia performed worse, scoring lower than the older group and showing
a serious deficit when it came to vocabulary, a cognitive function that doesn't normally decline with age. These
deficits are not confined to those with MS or Fibromyalgia but, as I mentioned, the fog may go hand in hand with other chronically
ill syndromes and diseases. At the present, there are also studies on how heart disease and heart surgery can sometimes affect
cognition and emotions.
With the fog, conversations are almost impossible. I'm in a flare up at the
present time and fog is a problem. I was with some friends recently and I found each question they asked me was very difficult
to answer. Sometimes the fog is referred to as brain freeze and that's exactly what I felt like; I felt the answers to
the questions being given were frozen in a big block of ice in my brain and I had to chip away to retrieve the answer. The
problem is, you feel ridiculous when you can't immediately think of your child's name or how they are doing (the other
day it took me a few moments to remember where and what my children were up to), or what color your living room furniture
is, or even what you did that very morning.
Yes, yes, I know. We all do that, and this is true; not every slip
of the tongue or every forgetful moment is "the fog," however, the difference in normal forgetfulness and brain
fog is the amount of times this forgetfulness happens and the severity of it. I am now fifty..... hmmmmm... fifty something...
I need to stop typing and figure it out.. hold on... fifty-two... no, that wasn't necessarily the fog, I've heard
of a lot of people forget their age after they turn 50. Anyway, I'm 52 now and when this terrible, embarrassing fog comes
others laugh and say, "That's what happens to us after 50." Yes, to a degree it does, but mine began when I
was 37 years old. Do you know what I was told back then by those who were 50 or older? "You don't know what forgetfulness
is... wait until you turn 50 (or 60/70)."
As the older women told me that when I was in my 30's, my thoughts
would go back to the past week, when for an entire week I couldn't think of what a chair was called. I couldn't remember
how to sit down at times. My husband had to tell me, step by step, how to get into our car and sit down. I couldn't answer
a simple question of, "Would you like a glass of water?" I knew I wanted one, but all I could say was, "I don't
know." It was near impossible to fix a meal because it was too difficult to figure out what to cook or how to cook it.
Folding clothes was too much for my brain to handle.
Did I tell the older women these things? No, I just smiled
and nodded. It's no use, I've found people don't really care to believe that a 37 year old has memory problems.
Now at 52 (see I remembered) I find "brain fog" is put into the category of "senior moments" and just
laughed at.
Here's the problem: The fog is a continual day-by-day, moment-by-moment occurrence to some
degree. It never leaves those who have chronic illness, it only fluctuates in severity (and with some poor souls, remains
constantly severe). With me, fortunately, the severity comes and goes, as I no longer have such severe symptoms as not knowing
how to sit down or my brain not recognizing right, as in left-right. (Try driving a car and not being
able to look right when you have to turn -- been there. Fortunately I was near home and my husband was driving behind me.
I had to get out of the car and tell him to let me know when to turn and this was with several cars behind us. And, no I wasn't
a senior at the time. In fact, I was probably still in my 30's.)
Brain fog with me, as well as with many, includes
a lack of an ability to concentrate, to answer simple questions at times, and feelings of depression that go hand-in-hand
with the fog. It is not a depression stemming from problems or a hatred of life or self, it is a depressed feeling that is
organic, can't not explain it, and, with me, will automatically go away as soon as the fog clears.
Brain fog,
with some individuals, can be so severe it has caused them to get lost in their own neighborhoods or their reasoning may tell
them the freezer is a perfectly normal place to set the iron. The fog is distressing as we forget important dates, important
duties, and may even forget that someone we knew for many years had died (been there). We are embarrassed when birthdays are
forgotten or that we forgot a problem a friend confided in us and we know they are in need but we can't remember why and
we hate to ask them because it looks like we don't care.
The fog is often said by those who experience chronic
pain and weakness as the most distressing symptom they deal with, not only because of the way it affects their daily living,
but how it is so often misunderstood by others. Friends should never dismiss with, "Oh, I'm so forgetful too!"
or "Wait 'til you get my age!" Yes, we will all experience forgetfulness and a certain amount of dementia as
we age, but "fog" goes beyond this as the one who is ill has had to live with it from a young age and it has made
a huge impact on their lives. They may have lost friends because of it, or perhaps their job. They have been laughed at, disbelieved
and sometimes ridiculed.
While the fog itself is no laughing matter, sometimes it can produce some funny
outcomes and it helps those of us with it to laugh at ourselves, at times. If you have a friend who experiences brain fog,
chemo fog, fibro fog or whatever, go ahead and share a laugh with them, as long as they know you believe their fog exists
and that you sympathize with them when they need it.
A
Christian Life
From the light house, brightly beaming
A Christian life is like
As he focuses on God and His
promises
As he glorifies God through his life. A Christian life
is like a city
Set high, majestic on a hill
Magnifies his love for God
By his obedience, doing His will. A Christian life is like salt
Used for perfect seasoning
Without it’s savor,
is useless
But, with it is found richness
Strength, and joyful living. If
you are a Christian
Let your life portray Christ
Allow others to see your joy and peace
That could be theirs
too
Simply by Christian living. Matt. 5: 13-14 …. Ye are
the salt of the earth: but, if salt has lost his savor… good for nothing… Ye are the light of the world, a city
that is set high on a hill cannot be hid." by Alma Norman
Copyright 2004
"She smiles entirely too much & looks too good to have
anything wrong with her." NOTE
FROM DEB: My comment is about something I have endured
for 22 yrs. I have had a total of 16 surgeries, I have FMS (Fibromyalgia), CFS (Chronic Fatigue Syndrome), Costacondritis
in the rib heads, Thorastic outlet syndrome, Osteoarthritis of the spine & hips & hands. All of which are hidden handicaps.
To look at me you would never know anything was wrong. I
have a handicap placard for our cars. I was 28 when I started with constant back pain. My son's were 6 & 8. It was
difficult enough to hide pain from them and spare my husband of the horrible mess the pain made of me. On my bad days when
I would use my handicap parking or I would break down and ride the motorized chairs. I was threatened by people, had the police
called on me, told that I should be ashamed of myself those were for handicap people. The
most horrifying to me was when Christians would say things like: "She smiles entirely too much & looks too good to
have anything wrong with her." Then if I complained it was: "She talks about it too much." The most hurtful
to me was, when I was in a great deal of pain, I was told I look angry at times. I even told people if they saw me doing that
PLEASE tell me. I work so hard to not let the pain show, but it will from time to time. I've had people go and tell others
that I looked at them like I wanted to slap them or I was angry with them. PLEASE
do not hold it against a person when they look good and have a good day. You never know how much it took to just get dressed
that day. I know for myself, at times I would be completely ready to walk out the door to go to services on a normal pain
day and it turned into a be-in-bed horrible pain day. I can be in horrible pain for days or parts of the day and have a few
hours that I can get out. I never know what my body is going to do to me. PLEASE
do not ignore them or get upset with them when they have a bad day, if you see a look on their face that concerns you, ask
first, don't say bad things about them without approaching them to see how they are doing. Know that the pain is enough
for them to deal with and don't add judging them to the hardships they endure each day. I know there are some who are not easy to live with when they are grumpy. I have dealt with those
people too. I work so hard myself not to be grumpy, but there are days it takes God to strengthen me all day long to be nice
to myself!! Pain is not an excuse to be hateful to people, but I do plead with everyone to take the time to first ask themselves,
what may have made a person react to something the way they did. Say a prayer for yourself and for that person, then wrap
your arms around that grumpy person and tell them that you admire the strength that they must have to fight their pain. You
might just find a smile instead of a frown, or a tear in place of a angry face. Let us build one another's faith up, not
destroy it with a quick response. ^^^^^^^^^^^^^^^^^^^^ WHICH MASK SHALL WE WEAR TODAY? I appreciate Deb's
note (above). So often we don't want to admit our negative encounters because we feel ungrateful and complaining, but
her experience is very typical for most ICIers. If we are too well looking we may not get the help we need, as well as others
not understanding when we turn down invitations or miss meeting with the saints. If we decide to be honest with all we are
going through and tell just how bad we are, sometimes we are judged as complainers because no one can feel so bad and look
so good. We often put on our mask and smile and say "I'm fine,"
and most of the time that's OK for we don't want to come across as constant complainers and we want to be treated
as "normal." At times (like handicap parking) we may remove that mask and put on our "I'm sick" mask
so no one will give us those looks of why we are parking in a handicap zone. However,
there are times when we want to rip off the mask and just be able to comfortably say, "I feel rotten!" without others
thinking we are grumbling. Other times we want to say, "I feel great!" and be believed and rejoiced with (even if
the "I feel rotten" may be just around the corner.) Mask are useful, however, and they serve their purpose as long
as we are able to remove them at times when we need others to realize we can not function well and those frowns stem from
true pain and weakness. ^^^^^^^^^^^^^^^^^^^^ As you see, I'm not a poet, but Deb's letter, as well as a real-life story of an individual
with a terminal illness who wasn't believed, because they looked so good, prompted me to write this: Isn't she happy?
Isn't she sweet?
Never a frown
Never a defeat!
Her life must be easy
Her life must be great
She can't be that bad
Even though she will state:
"I
feel very ill and
My thinking is dull."
But she complains too much,
For she looks wonderful!
If she'd just get busy
If she'd just think right
Her
"illness" would be gone
It would
be no where in sight. (few
months pass)
No! How can this be?
How can she be dead?
She didn't seem all that sick;
I thought it was just in her head.
She looked too good and
Such an uplifting tone;
It was not right of her
To bear her burden alone.
She should have told me--
She
should have shared her grief;
I would have
help her
I would have given relief.
She should have said she was feeling very ill,
She should have said her thinking was dull,
She should have said how it all was very bad,
Even though she looked wonderful.
I would have be...lieved.......her
I would...........
......oh.
Forgive me. --Pat Gates
"Nobody
Understands!" Deborah A. Barrett PhDThe other day, during a casual conversation, a friend told how she had explained my condition (fibromyalgia)
to someone else: You know, when you
work yourself really hard, so that you feel totally exhausted, and you ache from top to bottom so badly that you cannot even
get up? Well that's how Debbie feels. Only it does not go away. I was floored. I felt tears flooding my eyes. But why? I wondered. Well, because I was understood.
My friend showed me that she knew what I was experiencing, how I go about my day. If she were an anthropologist, she should
feel successful because she managed a deep understanding of the "native's experience." Later, I thought about my friend's simple explanation of fibromyalgia. Why was it so meaningful
to me that someone understood how I feel? At the same time, however, I felt a little strange about it. As if my friend had
peered into the otherwise personal and private relationship between me and my pain. I pondered my mixed emotional reaction. I began to ask people with similar "invisible"
conditions about their desire to be understood. The answers were mainly practical: If we were understood, they explained,
we would not have such a difficult time being excused from certain activities. Friends would understand why we were saying
"no," and not push us. They would accommodate us, or give us a break when we need it. The same goes for family,
and even coworkers when possible. In addition, being understood is important because it can restore self esteem when we are
not able to finish (or even start) the projects we take on. Being "ill" is preferable to being thought of as "lazy,"
"hypochondriacal," or a "whiner." Finally, being understood, particularly by someone who shares our experience,
creates a feeling of camaraderie. You do not have to explain in any detail to produce an accurate picture or evoke an appropriate
response. To be understood is to be validated.What It Means to Be "Understood" Many of us often think with dismay that "nobody knows what
we are going through." This is probably correct. The casual observer is unlikely to perceive the depth of our pain or
fatigue through our behavior or appearance. And our friends, try as they may, often feel confused by our seemingly strange
array of complaints. Our presentation communicates the double message of "invisible illness" -- that we can look
perfectly fine, but feel absolutely crummy. A
few friends of mine with invisible illnesses, however, prefer the secrecy. They would rather appear like everyone else and
lick their wounds later, in private. They have weighed the cost of added physical discomfort against the biases they imagine
people may have against them, their abilities, their attractiveness, and even their value as a person, and decided to "bite
the bullet." For them, understanding appears threatening, unless reserved for their most intimate circle. As such, understanding represents a two-edged sword. Let's
think about it. If someone really knew what you were experiencing, say, right now, how might that person feel or react? How
do you feel when you know someone is suffering? Knowing the extent of our difficulties may frighten others, depending on their
own life experiences and how close they are to us. Those closest to us, and particularly the more nurturing, may become overprotective.
They may wait on us hand and foot, as though we are unable to do anything for ourselves. At the same time, our social invitations may dwindle as "understanding" friends protect
us from overtaxing activities. And although there are laws against discrimination, it is not difficult to imagine coworkers
and bosses changing their opinion about the type or amount of work suitable for people like us (even if we had been successfully
doing it!). Such "understanding" could affect our ability to find and keep manageable employment. It therefore seems to me that understanding, like many things,
is something that we want when it is convenient for us, but that we would like to withhold when it works against us. Rather
than providing full information with a vivid stamp on our forehead (or something less abstract such as a wheelchair), we may
prefer to disclose information about our condition as we feel comfortable to do so. We could offer limited, person-specific
understandings rather than a fuller picture of our situation. After all, wouldn't we prefer to be invited to take part
in the activities of life (and sometimes have to say no, or leave early) than to be not invited at all? On days when we feel
better or have the gumption to push, we will want to join in! It is better that this remains up to us. What does it really mean to understand someone else's experience
anyway? Let's take a look around ourselves. What is going on with our friends, our family, our colleagues? Can you really
understand what your neighbor going through a difficult divorce feels? What about your friend with an eating disorder? You
may not even be aware of it, or the extent to which it governs her days. What about the couple you know who have been desperately
trying to have children, who are now participating in the impersonal, drawn-out gamble with science in hopes of conceiving?
What about friends who have lost a spouse, a parent, or even a child? Can most of us say we understand? More likely we are guilty of avoiding someone in one of these situations
because we do not know what to say or how to act. We probably feel badly for them, and the thought of facing their problems
makes us feel more uncomfortable. I am not pointing
this out to say that we are self-centered buffoons for wanting understanding, while we ourselves are unable to understand
others' life experiences. Rather, I would like to suggest that (1) understanding another person's experience is something
rare, and (2) that sort of understanding may not be crucial to being a good friend. Unless you are going through a similar experience (and sometimes even if you are), deep understanding of someone
else's experience is difficult to achieve. However, I also argue, it is not necessary to have first-hand knowledge of
what it is like to have lost a child, for example, to be a good, supportive or loving friend to someone who has. But think
how much easier it would be if your friend provided guidelines about what helps the most, and the areas that are most sensitive.
Well, by knowing yourself and accepting your current needs, this is precisely the sort of information you can provide for
your friends, to make their job as friends easier.Self-Understanding Is Key So rather than longing for understanding from others, the critical
thing may be to understand yourself and be able to communicate that picture to others. How people will treat you is largely
up to you -- and your behavior. The more you are able to recognize your own capabilities and limits, know your preferences,
and are familiar with your audience, the better able you will be to do this. Recognizing your own capabilities and limits helps communicate to others enough to receive an understanding
response. While it is likely that your abilities will slowly increase as you find ways to pace and adapt, it helps to know
what you are able to do right now. When unable to finish something as planned, we may feel the hopelessness that often comes
from struggling with chronic illness. But healthy friends also complain about their own slowness. "That's not the
same thing!" you protest. And I agree, in many ways it is not, and certainly not to us. But keep in mind that most people
have competing demands and often say "no" for all sorts of reasons. This sometimes gets blurred by people with chronic
illness who are so eager to be able to say yes. Your "no" or "not yet" is not viewed as harshly as you
probably view it yourself. Knowing
your preferences makes it easier for everyone involved. The best way, I have found, to figure out how various factors affect
you is to keep careful notes. Create a simple worksheet to record the most important variables of each day and measures of
your experience. As you become well informed about the effects of say, noise, light, temperature, activities, movement, and
lack of movement, you are in a much better position to keep yourself feeling better. The less control you have over your environment,
the less you can affect these things. But at least you can plan your day. If, for example, you know the supermarket is always
too cold and bright -- wear extra clothes and always have a pair of sunglasses handy.Plan Ahead Know your audience enough to see what they need to know. While
you would not call ahead and ask your grocer to darken or heat the market, you certainly can ask a worker to help load groceries
in your car. If you do not want to offer a long explanation, tell him you suffer from arthritis, a well known and thus more
acceptable condition. As for friends, it is up to you how much you wish to reveal. For those you are the closest to, you could
offer written material (there is now so much out there!). Start with something short, like a pamphlet. You may be surprised
how much close friends and family members may want to read about your condition. This not only provides background on your
condition, but has the legitimacy of science behind it. Otherwise, it is up to you how (or if) you want to explain your own
experience. You may tell friends that you suffer from pain and fatigue, and that while the symptoms fluctuate, your overall
condition will not deteriorate. See how they react. If they seem interested in helping, you could explain what types of things
affect you most, and the simple things your friends can do to make your life much easier (such as opening heavy doors, lifting
or carrying heavy objects). Most friends will be happy to do the simple things that can make a huge difference to your well-being.
It is more complicated with coworkers and casual acquaintances, with whom you may not want to share intimate details of your
life. But you do not have to. Reveal information only when it becomes relevant. If you are lacking a good chair: you can explain
that you have back trouble and need a supportive chair. It is not necessary to explain fibromyalgia to everyone. If a line
is too long for you to withstand, you could ask for a supervisor and explain that you have a neuromuscular pain condition
and need special consideration. Select an explanation that fits the situation. Try to figure what you can comfortably ask
of people. Always keep your requests simple and show lots of appreciation for any effort taken on your behalf. Applying this at work may be the most difficult, where deadlines
are likely to be less flexible. Of course jobs vary significantly in this regard. It is your call whether you want to share
your disability with your employers. But either way, your boss or clients do not need to learn the details of your disability
-- but just enough to accommodate you. You will have to engage in a careful balancing act between trying to achieve the work
environment you need and not putting off people with fears that you are unable to do the job. This makes knowing your abilities
crucial. If you have a clear idea of what it would take for you to do a job, and what you may need in the form of special
considerations, you can be straightforward. Not apologetic. Not demanding. In most situations where you need special assistance
(helpful gadgets, rest breaks), your employer is legally obliged to accommodate you. When you are comfortable with your own
needs, it becomes much easier to communicate them, and without self pity or bad feeling. Applying this in social situations should be much easier. After all, social engagements are supposed
to be fun! While this sounds like an obvious statement, how many times are we exhausted by spending time with our friends?
To some extent, this is inevitable. But we can play a hand in reducing the stress of interaction, and increasing our pleasure
and enjoyment. Because we have limited energy, the first step is prioritizing: select the engagements you want most to attend
and decline those that are less important. For those you will attend, think about what would make it easier for you? First,
what can you do to make yourself most comfortable? (My bag of tricks always includes ear plugs, a heat sack and extra medications).
Second, if you are going to an event with others, what would you like them to know? It may help, for example, to check whether
the driver would mind leaving somewhat early. Third, what can the host or hostess do to increase your comfort? Call ahead
and find out enough about the environment to help you prepare. Then, if there is something that would make a significant difference,
explain it simply. For example: ask, "if I am feeling bad, would it be all right if I go into another room for a few
minutes to lie down?" Creative backup plans can help you feel more comfortable about participating. Remember, everyone
would prefer that you feel good! If your request creates only minor inconveniences for others, most people would be happy
to pitch in (especially if you show your appreciation.) Finally, leaving early also keeps experiences more pleasant. As my
grandfather always said, "never stay too long - it keeps people wanting more." And they always did! http://www.paintracking.com/fms07.html used
with permission
OUR HOPE SEPTEMBER 2006
UNDERSTAND WHEN WE
FORGET Please understand
us when the "brain fog" hits and we forget an important event or something important you told us. Time
and time again we have been so embarrassed when we can't recall some important news you told us that
meant a lot to you at the time--it meant a lot to us as well. The information does go in, but at times, recalling
the conversation is difficult. I know it looks like we don't care, but please be reassured, we do and we are embarrassed
when we have to admit we don't remember an intimate conversation we had with you. UNDERSTAND AND BE PATIENT WITH OUR SILENCE AND PROCRASTINATION When fatigue
or fog hits you may think those of us who experience these don't care about you because you don't hear from us for
a while. It's not that we don't care, it's all we can do just to function with our daily chores. Thinking of what
to cook or finding energy to wash dishes sometimes takes an entire day's worth of energy. Even doing a load of clothes
is sometimes too much, not just because of physical fatigue, but also cognitive fatigue. We do want to get in touch with you,
but life just is too overwhelming at times. We have good intentions and desire to call or write but before we know it, we
have procrastinated, due to fatigue, and several days or weeks may have gone by before we regain our energy. We are embarrassed
and sorry so much time has gone by.
| DON'T FORGIVE US I just realized after I had titled the above paragraphs, "Forgive When We Forget" and "Forgive our
Silence and Procrastination," I was asking for forgiveness for something we can't help. We don't need forgiveness,
we need understanding and patience. We can't help being like this and we need not be forgiven. It's as much a symptom
as your runny nose when you get a cold. I'm going to go back and retitle those paragraphs, replacing "forgive"
with "understand."
OUR HOPE JANUARY 2006
|
The Letter
to Normals
Written
by Ronald J. Waller
Hello Family, Friends, and Anyone Wishing to Know Me,
Allow
me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person’s
time is their most valuable asset and yours is appreciated.
I want to talk to you about Fibromyalgia (FM) and
Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed.
And because of this judgments are made that may not be correct… So I ask you to keep an open mind as I try to explain
who I am and how FM/MPS has assaulted not only my life but those whom I love as well.
You see, I suffer from a
disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat
and battle this demon, who’s attacks are relentless. My pain works silently, stealing my joy and replacing it with tears.
On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident.
You wont see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just
as debilitating. And in many ways my pain may be more destructive because people can’t see it and do not understand....
Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough I assure
you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want
to die....
Most of my "friends" are gone; even members of my own family have abandoned me. I have been
accused of "playing games" for another’s sympathy. I have been called unreliable because I am forced to cancel
plans I made at the last minute because the burning and pain in my legs or arms is so intense I cannot put my clothes on and
I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm.
I feel like a child at times... Just the other day I put the sour cream I bought at the store in the pantry, on the shelf,
instead of in the refrigerator; by the time I noticed it, it had spoiled. When I talk to people, many times I lose my train
of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how
it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try
to understand how it feels to “lose” the laundry, only to find it in the stove instead of the dryer. As I try
to maintain my dignity the Demon assaults me at every turn. Please try to understand….
Sleep, when I do
get some, is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably.
I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.
And
just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week.
I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be
able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably.
And there are those who say “but you did that yesterday!” “What is your problem today?” The hurt I
experience at those words scars me so deeply that I have let my family down again; and still they don’t understand….
On a brighter side I want you to know that I still have my sense of humor. If you take the time to spend with
me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I love my kids and
grandbabies and shine when they give me my hugs or ask me to fix their favorite toy. I am fun to be with if you will spend
the time with me on my own playing field; is this too much to ask? I love you and want nothing more than to be a part of your
life. And I have found that I can be a strong friend in many ways. Do you have a dream? I am your friend, your supporter and
many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world
will know how proud I am at your accomplishments and how honored I am to have you in my life.
So you see, you
and I are not that much different. I too have hopes, dreams, goals… and this demon…. Do you have an unseen demon
that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I
will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can,
I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that
I have little hope of a cure or effective treatments, at least right now. Please understand….
Thank you
for spending your time with me today. I hope we can work through this thing, you and I. Please understand that I am just like
you… Please understand….
Copyright of www.fibrohugs.com
How can a Blind Person obtain a Braille Bible
from Bibles for the Blind and Visually Handicapped International?
The mission of BIBLES FOR THE BLIND
AND VISUALLY HANDICAPPED INTERNATIONAL is to provide the Bible in braille to those blind people around the world who cannot
afford it.
If someone wishes to receive a braille Bible, we ask that they contact us either by e-mail telephone,
in print or in braille and tell us of their need.
We can be reached at:
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E-mail: info@biblesfortheblind.org
Others Need Your Prayers Those of us who run like hamsters on the wheel of work/family/do this/do that/hurry/hurry/hurry, have a special need
that can BEST be filled by those who have been called to go at a slower pace: FAITHFUL PRAYER.
The BATTLE
you engage by your continual and faithful PRAYER is absolutely VITAL to the success of God's work! Your work in
this area is extremely important! We need you so much!
While many may not say so or even think about it,
God's people are often desperate for someone to PRAY! There are so many children who need someone to pray earnestly
for them every day! There are people out in the work force meeting the enemy head-on, hanging sometimes by only a thread
of faith - beg God to send help!
There are people who know God's will, have small thoughts of repentance, but
need someone to pray that God will do whatever it takes to awaken their spirit fully to seek Him.
In our culture,
we've come to give lip service to praying, but few actually practice authentic faithful prayer. What you can do
in this regard is priceless; we can't produce any good thing without it!
"Cover me; I'm goin'
in!" from Susan
Living with Multiple
Sclerosis is a family disease (a daughter’s perspective).
Imagine each morning
a little guy, dressed in multi-colored striped pants with a plaid shirt, and that unmistakable big polka-dotted bow tie, saying,
“Step right up, step right up…see what the day holds for you.” “Hey you, the strong young man
with the beautiful family. Why don’t you take a spin?”
As you step up, you are told there are two wheels in this game. First is the “Wheel of Activity”.
Oh boy, that sounds like fun! He tells you to give it a huge spin; you heave it with all your might, and watch it go.
As it begins to slow down, you get to read some of the choice activities, such as building in the wood shop, playing tag with
the kids, strumming a few bars on the guitar…oh my, where will it land. The excitement continues to build as
the family looks on, and it finally lands on “leisurely walk in the park”. The children jump for joy, and
the parents hug one another.
Then the little guy says, “But wait, there’s more.”
Just then, he swings out the “Wheel of MS”, which begins to spin without anyone touching it with
words like loss of coordination, numbness, weakness, fatigue, blurred vision. You audibly grumble, “I didn’t
even get to touch it!” “Unfortunately” he says, “some things just aren’t in our control.”
You watch with bated breath as the wheel begins to slow down, and you pray, please let my legs be fine today. As it
stops, you give a sigh of relief. I’ll be able to take that walk after all…but hold on, what’s that
it says “dizziness”. How can that be, now I’ll have to walk slower, and possibly need the cane…maybe,
I just won’t go...after all, there’s always another day.
As you sullenly walk away, you
turn to ask, “Why is it sometimes when I go to the doctor’s I’m fine, and he says to me, “it’s
all in your head”… mumbling hypochondriac. Despite the years of tests, questionnaires, and updated research
that is out there today.”
The little guy points to a spot on the wheel which states, “Be
joyous, you’re going to have a good day.”
He
then says, “There’s nothing I can do about the doctor, I know that’s not fair, but why not on a different
day you ask. Like a fun day! I think, maybe, you’ve been looking at the wrong meaning of the word “fair”.
There’s one for ‘unblemished/without obstacles’, and another for this place…where people
gather to enjoy games/rides/shows/food and just plain fun with others. The day may not have gone exactly as planned;
what with the long lines, overpriced food, closed rides; but overall, you walk away having had a good time. You never
know what to expect at a fair, but as our motto up there says, enjoy each day with what you are given.”
“Until next time, have a pleasant walk with the family.”
© "All
rights reserved, March 5, 2007 by Rebecca Lynn Willis"
"Ha ha, we're sick and you're not."
(The benefits
of being in the
exclusive Chronically Ill Club)
- We learn to do so many things from sitting on the bed - like put on your shoes, put
on your pants, put on your shirt, comb your hair (forget the styling), study your bible lesson, talk on the phone, eat lunch
- oh yes try to sleep (impossible)! (Yeah, and to think "normals" just use their bed for sleeping! Look what they're missing out on.:-)
- We know better than anyone else how we feel and what we are capable of doing -
wish the healthy and well others would understand our situation. Do not need sympathy nor stories of how capable we should
be doing - just compassion and understanding. (yesiree, I agree)
- "Normals" have to have a much more wonderful day to have it to be a wonderful
day than the wonderful day we deem to be wonderful.
- We meet our insurance deductible
in mid-January.
- Our disabling chronic illness is more real than your imaginary
medical expertise.
- Pain isn't all bad, it reminds us we're still alive.
- We've gained energy management. When we bend over to tie our shoes we
wonder, "What else can I accomplish while I'm down here?"
- We must be
better looking than the general population because we are told so often, "But you look so good."
FROM A READER:
We learn about what others really think of our situation [and
we treasure true friendships-see end of comment. pg] Sadly most of the people do not understand or do not
want to understand.
People need to understand that ICI is a very real problem for many, though hard to understand and
realize we need compassion not just lip service of "Oh, I understand your situation." When they have no idea
what your life is like
and usually do not care to understand at all. Treasure the people who understand and as
good listeners. I have a dear friend who has so many more health problems than I that we share a phone conversation
most every day. We know that the other understands completely and is there to listen and offer help if needed. We have learned that most of the people do not understand nor really care
to understand your personal situation. Those who really care and love you will be there to help you when you need help,
just forget the rest of the people
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