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TIPS FOR COPING WITH CHRONIC ILLNESS
Vijai P. Sharma, PhD
I thought it might be particularly helpful to focus on the
five major psychological stressors that a person with chronic and disabling illness may experience. Note that psychological
stressors are those that we bring to bear upon ourselves through our thoughts and emotions. 1. "I am not the person I once used to be." This idea might give rise to such thoughts
as, "I am worthless now;" "I am no help around the house," "I don't earn a living," or "I
can't provide for my family."
2. "Others are not what they used to be."
Examples, "They think I am a burden;" "They don't come around me any more" or "They don't
love me (or respect me) like they once did." Interestingly, stressors number one and two feed on each other.
3.
"Everybody is getting on with their life and I am stuck here." One compares one's own life
with that of others in a downward mode. It's not an accurate comparison because one tends to put oneself down and fantasize
about the lives of others.
4. Sense of loss of control over one's life. Examples
of thoughts that go with it: "This is more powerful than me" or, "No matter how many times I try to get up,
the illness flare up and knock me down again every time. There's no point in trying."
5. Some
people and some circumstances in fact do change. Coping with those changes does cause stress --- especially if the
individual resents these changes.
What are the characteristics of a person who copes well with a chronic and
disabling illness? I had the opportunity to observe many people in the last ten to twelve years who in the face of highly
discouraging circumstances are able to maintain a positive attitude, hold a realistic view of their illness and future prospects,
and still not loose their sense of humor. Based on my observations, I have selected
four characteristics of a "coper."
1. You must have a fighting
spirit. That means you know exactly what you are up against. Even if it is a terminal illness, you keep your fighting
spirit up. Note that people with a fighting spirit are not afraid of dying. When and if that time comes, they are at peace
with it.
2. You must like yourself under all circumstances, even when you think you
don't look that good. Suppose, you were to lose hair from chemotherapy and you couldn't stand to look at yourself
in the mirror, it means that you didn't genuinely and unconditionally like yourself. If you don't like yourself, chances
are that you won't take very good care of yourself.
3. You must have a strong belief that
you are more than your body. There is more to you than the physical functions you can perform. Faith can be very
helpful in such circumstances. For example, if you think God loves you regardless of your appearance, earning power or other
capabilities, you too would like yourself..
4. You must have a problem-solving attitude towards
the challenges you face on any given day rather than to dwell on a past in which the problems did not exist. Copers
believe that "problems" should be translated as "challenges," leading to new solutions and means for personal
growth. People get totally embroiled in grief and overly focused on the loss of previous functioning capacity. As a result,
they can't focus on dealing with the challenges with which their illness confronts them.
How do you help yourself with disease management and
achieve the quality of life permissible under the circumstances?
1. Accept your illness. That word, "acceptance," gets under the skin of people who are
still mourning the loss of better, happier days when were far more capable to doing things. Those who make an effort to adapt
to their circumstance understand the value of acceptance. They know it helps them to get over loss and meet the new challenges
they face.
2. Like yourself as you are today, with all your problems, illnesses, limitations, and of course, your physical appearance.
3.
Get over the "Why me?" attitude
so you can solve the problems of today. It might be, for example, the problem of how you could be more comfortable while lying
in bed or how you could still get some exercise in spite of a knee hurting so much. In order to look at the problem of today,
you have to stop staring at the past and the future.
4. Take total responsibility for your
health and never overlook all the help you can get.
5. Become an expert on your illness Become an expert on your illness.
6. Take pride in what you can accomplish today, and don't shame yourself over
what you can't.
used with permission
http://www.mindpub.com
LIFE WITH INVISIBLE CHRONIC ILLNESS "When
I was getting sick, feeling tired and achy all over, I kept wondering: is this real or is it just my imagination?, as if my
experience were not real." -selected
“This illness is to fatigue what a nuclear bomb is to a match.
It’s an absurd mischaracterization.” This was stated by Laura Hillenbrand, author
of Seabiscuit, who suffers from Chronic Fatigue Syndrome. Many CFS sufferers are trying to get the name changed to
the medical term that is used overseas, Myalgic Encephalomyelitis, due to the fact the word "fatigue" undermines the extent of debilitation that can occur with CFS. This was stated by Laura Hillenbrand, author of Seabiscuit, who suffers from Chronic Fatigue
Syndrome. Many CFS sufferers are trying to get the name changed to the medical term that is used overseas, Myalgic Encephalomyelitis, due to the fact the word "fatigue" undermines
the extent of debilitation that can occur with CFS.
You And Me
You laugh
and say, 'I'd love your life!'
I smile and say, 'You'd hate it.'
You say I've got an
easy ride,
I say, 'You think I fake it?'
You say it seems I have the life
Most others always
want.
I say I should be having fun
At my age, but I can't.
You say that I exaggerate,
It can't
be all that bad.
I say that if you lived like me
Then you would understand.
You say, 'You don't
need pain relief
For sleeping all the time.'
I say, 'But there is so much more
And sleeping's just
one sign.'
You say I should just get on up
And do a little more.
I ask if you have seen me crash,
Seen me crawling on the floor.
You say, 'But yesterday you were
Out for lunch with friends!'
I say, 'Yes, and I pay for it
With pain that never ends.'
You say 'If you could do it then
What's stopping you right now?'
I say, 'My body and my mind
Have broken me somehow.'
You say, 'You're just malingering
You could do it if you tried.'
I say that you have no idea
How
I've fought against being tired.
You say, 'Show me the blood test,
Prove to me you're really ill.'
I say, 'I had a life once.
And I want and need it still.'
You say, 'You don't look that
sick,
Maybe you just need to get out.'
I say, 'I tried that and I want to,
That you can't begin
to doubt.'
You were my friend, you knew me,
Knew the girl I used to be.
I would never have let all
that go
For this life that I now lead.
But the life I had is gone now
And I'll never get it back.
It's painful and it's scary
To think of all the things I lack.
So if you still want this shadow,
This lonely, empty shell,
Go ahead and take it,
Take from me, if you will.
But remember when you're
lying there
Unable to find the relief you seek
All the things you said to me.
See if you still think I'm
weak. -Fiona Brechin
 THOUGHTS FROM A CHRONIC FATIGUER I
guess I got so sick of all the sites saying 'it's ok, you'll be fine, just don't think negatively cause that
makes it your own fault'. It's so false - being sick is horrible and scary and miserable. Yes, I'm all for being
happy, but pretending that I'm ok just so others feel better about themselves is nonsense. I do that most of the time,
but I'm still in this dark place that is painful and confusing, and no-one around me (other than Dren) seems to listen
when I need to talk about it - they can't deal with me being in pain. They just start serving me platitudes and random nonsense when all I really need to hear is, 'Yes, this is awful
and it's not fair and I recognize that you struggle every single day just to not give up. I know that when you're
lying on the sofa watching a video that you're actually doing all you can do, and that it drives you crazy. I know that
every day you wonder if it's going to get too much and that you continue trying to live anyway, and that it takes courage
to do that'. I know it sounds self-absorbed, but it's
still true. I know that it's hard for people to understand CFS because it's an invisible disease, which means that
they just see me lying on a sofa, not doing anything, or sleeping all day, or whatever. They don't know what's going
on inside me. They don't see how difficult it is just to live one day, and most of me is glad they don't, cause I
don't think they could handle it. I don't want pity, I just want acknowledgement... does that make sense? I don't
tell most people that because it sounds so selfish *sigh* And it probably is. I don't know. -selected/edited
A senseless, unrhyming poem, but I'm sure
you'll understand Was I going to do this
Or was I going to do that?
I think it was this
But it could have been that.
What if it was the other?
This, that or the other?
I can't remember which,
Now where was I? --Pat
"DON'T
OVERDO"
(What is too much?) "But don't ask what is too much, because often there is no easy or consistent
answer. This is what we spend years of our lives trying to resolve. For a very ill person, too much can be taking a shower
or making a sandwich. For someone further up the recovery ladder it may be a conversation too long, a walk too far or too
prolonged a spell at the computer. For the nearly-well, it may be an inability to achieve a former level of physical fitness,
or an awareness of reduced mental or emotional stamina." -selected And for many of us we can be one way one day, another way, another day, even to the point of going through all these
at different points during the same day.
This is how it manifests: I need to wash my car. As I start toward the garage, I notice that there
is mail on the hall table. I decide to go through the mail before washing the car. I put my car keys down on the table, put
the junk mail in the trash under the table, and notice that the trash can is full. So, I decide to put the bills back on the table to take out the trash first. But then I say to myself, since I'm
going to be near the mailbox when I take out the trash anyway, I might as well pay the bills first. I take my check book off the table, and see that there is only one check left. My extra checks are in my desk in
the study, so I go to my desk where I find a bottle of coke that I had been drinking. I'm about to look for my checks, but first I need to push the coke aside so that I wouldn't accidentally
knock it over. I notice that the coke is getting warm, so I decide that I should put it in the refrigerator to keep it cold.
I head towards the kitchen with the coke. A vase of flowers
on the counter catches my eye - they needed to be watered. As I the coke down on the counter, I notice my reading glasses
which 'I’ve been searching for all morning. I decide
I had better take them back to my desk, but first I must water the flowers. I put the glasses back down on the counter, fill
a container with water when suddenly I spot the TV remote. Someone had left it on the kitchen table. I realize that tonight,
when we go to watch TV, we will be looking for the remote, but nobody will remember that it's on the kitchen table, so
I decide to take it back to the TV room where it belongs, but first I must water the flowers. I splash some water on the flowers, but most of it spills on the floor. So, I put the remote back down on the table,
to get some towels to wipe up the spill. hen I head down the hall trying to remember why I'm going that way and what I
was planning to do. Now it’s the end of the day; the
car isn't washed, the bills aren't paid, there is a warm bottle of coke sitting on the counter, the flowers aren't
watered, there is still only one check in my check book, I can't find the remote, I can't find my glasses, and I don't
remember what I did with the car keys. I try to figure out
why nothing got done today. I'm really baffled because I know I was busy all day long and now I'm really tired. I
realize this is a serious problem, and I'll try to get some help for it, but first I'll check my e-mail.
-unknown
(While it is true that some with chronic illness are
unfaithful, this article is only dealing with those who are faithful.)
Missing Services...Again
Being
Misjudged as Unfaithful
by Pat Gates
He stood in the foyer, hand outstretched, along
with a big smile on his face. I grit my teeth, waiting for the moment he would say it...here it comes...it's coming...coming..."You
sure don't look sick!" BAM! There it was, my weekly Sunday morning greeting. Nothing else said, just that. Everyone
who experiences chronic illness that can't be seen outwardly understands how I felt, but in reality it was worse, in the
fact that his wife had previously took it upon herself to call me one morning and discipline me for missing services and "acting
sick." This was 13 years ago, during my first year of illness, when
the disease was steadily progressing and new symptoms appearing each week. The night before her call, I had experienced frightening
symptoms and I had awaken fatigued and uneasy from the previous night. The phone rings and I hear "How are you?"
and before I even really begin talking she says, "Just stop it! Stop acting sick!" Even though I had been a faithful
friend, I had been faithful in my service to God and serving the church, and I had not shown signs of depression, she still
came to the conclusion I was "just depressed" and didn't want to meet with that congregation. While most Christians
who have chronic illness don't experience such a blunt reprimand as I did, they sometimes experience subtle hints of unbelief. THE PROBLEM OF MISJUDGMENT A
few years ago I gave a talk to Christian women about living with chronic illness and, invariably, the main topic of discussion
after the talk would be the misjudgments that would take place from either family members or individuals in their congregation.
I believe this topic is always mentioned because out of all the physical and emotional symptoms and side-effects of living
with illness, this one is the most hurtful--the mistrust and misjudgment from those we love and depend on. BEING MISJUDGED AS UNFAITHFUL WHEN MANY WORSHIP SERVICES ARE MISSED This problem usually occurs if the person has not yet received a diagnosis and "looks
good" or if they have an illness that is usually not understood by most people: autoimmune illnesses and bipolar disorder
are good examples, but even those with heart disease or cancer may experience misjudgment at times. I
heard about a young mother who has recently become ill and is yet undiagnosed, but because of chronic weakness has been misjudged
as unfaithful due to her missing services at times. Afterall, she's young, she looks good and she's probably just
tired from raising young children -- we've been there. There have
been faithful women with chronic illness who had been disciplined by other sisters in the congregation for not being the right
kind of example in attendance. Others have been labeled "unfaithful" and described as such, when they have dealt
with bipolar disorder or misunderstood ailments. Some chronic sufferers have been offered "spiritual help" for their
"spiritual weakness." Many are misjudged as "just depressed" (and often that is said in the same tone
as saying they are "just unfaithful" without any further followup to try and understand or help the individual). THE PROBLEM OF BEING MISJUDGED AS LAZY OR APATHETIC Sometimes misjudgments can occur even if the infirmed individual attends all or most meetings
of the church, but may not be able to serve the church during the week as they would like to. An elder's wife who suffers
from fibromyalgia told me about her misjudgments from some of the women in the congregation. Her husband told her some of
the men had come to him saying their wives have a problem with her because she isn't "pulling her load" in taking
care of the needs of members and she wasn't being as hospitable as she should be. I could see the pain in her eyes as
she told me how much this hurt her. I knew of a Christian with heart
disease who was judged as lazy by a family in the congregation and as far as I know this continued up until the death of this
very faithful child of God. I know of a Christian man who absolutely will not accept his wife's very serious illness (life-threatening
illness) and deems her as lazy when she is unable to keep the house spotless. WHY
THESE MISJUDGMENTS OCCUR Ignorance, sometimes coupled with apathy,
I believe, is the main reason for the misjudgments. The one who is judging does not understand what it is like to experience
this disease and most of the time they don't care enough to find out more about it. Illnesses that are ongoing, fluctuating,
unseen and unknown (characteristics of disease unknown by general population) carry a high risk of being misjudged because: The person looks well most of the time. The
illness fluctuates in severity. The person may be very active one day and unable to get out of bed the next or may feel good
in the morning and down in the afternoon (or vice versa). Hour by hour, even minute by minute may bring changes (sometimes
I can give you the exact second my body quits, other times it comes on gradually). The
disease itself may not be fully understood by doctors, much less the rest of us. Other times it may be fully understood by
the medical profession, but most healthy people don't have a clue how it affects the body. People,
in general, believe that any illness can be cured with the right attitude or with the right medical care, or both. They won't
accept your answer that "there is no cure." There is absolutely
no way a healthy person can understand the pain and fatigue that goes along with certain illnesses. They may understand pain,
to a degree, even though they can't possibly understand daily pain if they've never lived with it. And debilitating
fatigue...no way can anyone understand this without experiencing it. No "being tired" from over work, over play
etc. can compare, nor even come close. The false notion that faithfulness
is always measured by attendance of the worship services. The faithful will meet with the saints when they are able and attendance
is a characteristic of the faithful, however, some unfaithful may be there three times a week and many faithful Christians
may miss many services, due to illness. HOW CAN YOU COPE WITH
THESE MISJUDGMENTS? INNER MAN: Be assured the problem lies in the ignorance of the other person and not yourself. Don't
allow unnecessary guilt to build up inside, for it will not only cause you to be unproductive, but will add unnecessary stress
which is harmful to your body. Be confident in yourself and don't come across apologetic for that may give the appearance
of guilt. Examine yourself by the Word of God, knowing it is God that
you need to please and not man (pleasing God will please people most of the time, but we can't always please all people
no matter how hard we try). Keep in mind, God knows your heart and don't allow anyone to create shame inside you. Watch out for Satan. Being misjudged is fertile ground for the temptation of bitterness,
anger, depression, vengeance, and a give-up attitude. You're not unfaithful now, but if you allow these feelings to grow
and fester inside, you will not only be unfaithful in your attitude, but you may find yourself missing services for the wrong
reason. Tell yourself the person means well (in most cases they do) but
they are ignorant of what it is like to "walk in your shoes." Try to think back before you became ill; did you misjudge
others? I did. Did you understand debilitating fatigue, pain and other debilitating symptoms? I didn't. Did you research
what the other person was going through? Most of the time I didn't. Forget
it. Just put the misjudgment out of your mind as much as you possibly can. Don't feed on it. Get it out of your head or
it will feed on your soul. "Don't fret, it only causes harm." OUTER
MAN: Keep calm and remain cool if someone decides to discipline
you for missing services. Don't cause more problems by verbally attacking the person in anger. If tears well up, allow
them and tell the person how much it hurts that she doesn't understand you and that she sees you as unfaithful. It hurts
to be mistrusted and there is pain associated with the knowledge that we are looked upon as spiritually weak when we want
to be good examples to others. Tell the person they may not understand
your illness and ask if they would like to sit down with you and learn more about it. Have material handy for them to read
or suggest to them to look it up on the internet or in the library. The more confident we come across the more believable
we will be to the one who doubts. Be loving as you tell them you are
trying your best and you are presently being misunderstood and misjudged. If
this person has respect for your husband, your mother, your trusting friend etc., ask one of them to speak to the person who
has misjudged you and explain your situation. If nothing works and this
person still doesn't believe you, then you are going to have to just live with that. Remember their ignorance does not
give you the excuse to mistreat them, nor excuse you from meeting with the saints when you can. WHAT
WE WANT THE CHURCH TO KNOW We want to be at every service. It
hurts to miss. Remember many of us have fluctuating symptoms. We are
embarrassed when you see us at the grocery store Monday morning after missing Sunday service. We will smile and be friendly
and may not mention why we missed on Sunday because we are trying to be confident, but inside we're constantly wondering
what you are thinking about us. We would like to explain, but if we do it looks like we are feeling guilty, and it takes time
to explain and we have learned most people don't want to hear explanations of our illness. We
may be with you on Sunday morning, feeling "great," and by early or mid-afternoon in bed and feeling just the opposite
Sunday night. You may see us on Saturday or Monday feeling great and we may have been down all day on Sunday. Even if we are
careful not to overdo on Saturday, it can still hit on Sunday. I heard
someone say they saw an ill Christian at Walmart on a Wednesday but this person missed Wednesday night service and the woman
telling this, judged the individual to be unfaithful. There could be 4 reasons that I can think of for this person missing
Wednesday night: (1) She is unfaithful and has no sense of responsibility towards God. (2) She is faithful and had energy
during the day and thought she could handle shopping and going to services. This is something we have to be careful of; our
bodies can fool us into thinking we are better than they really are. (3) She had to go to Walmart to get medicine or something
needed for her family that couldn't wait. Maybe she picked up a couple of other items while she was there to save energy
later. There are physical obligations that have to be taken care of. (4) Perhaps she missed Wednesday night for some other
illness that came up with herself or with a child or parent, or some good reason I can't think of at the moment. My point
is, why talk about her to others when we don't know the situation, and it is dangerous to judge. What if we are misjudging
a righteous person? We want you to see us for who we are, not label
us due to one aspect of our life that prevents us from meeting with the saints on a regular basis. See our faithfulness. See
our love for the Lord and for His church. Please don't say, "Hi
stranger," when we come back after missing for a couple of weeks or more. Instead, say, "I'm so glad you are
feeling better and are back with us. We missed you." Or, "I know how much you want to be with us and worship God,
I'm happy for you." Say anything that confirms we are missed because you love us and that you understand if we had
a choice, we would be there. We know it to be true, but it is comforting and reassuring when you say it. I like when the men mention my name in the announcements that they are glad to see me back,
after missing several meetings. To me, that makes it legitimate that the congregation understood I was absent due to illness.
In some congregations those with chronic illness are overlooked in the announcements or prayers (especially younger ones)
because others get used to their absence and don't think about them. If you see this happening, perhaps you can make a
suggestion to your husband, an elder, deacon or any of the men to make sure they remember brother or sister "Smith"
who needs the attention and prayers of the congregation on a ongoing basis. If
you don't understand us, ask. We welcome an opportunity to explain why we miss so much. We would much rather you ask then
know you are questioning our faithfulness. Believe us and trust us. If
our husbands or family member tells you they think we are lazy, you still must believe us. Fortunately I've never had
to experience this, but many faithful Christians are misjudged by their own spouse or others in their family. I know this
may be a difficult thing to do, especially when you have respect for the spouse or relative, but keep in mind, even the faithful
sometimes get caught up in ignorance. Yes! Please care about us spiritually.
Ongoing illness brings ongoing temptations. Keep a look out for us, build us up, but realize we are probably not being tempted
by Satan any more than you are, our temptations just may be different than what you experience. Please
keep us a part of you. Don't forget us. Keep missing us, for we never forget you and always miss being with you when we
have to stay home due to illness.
Comments on article,
Missing Services Again: I appreciated the
comments about being misjudged for missing services... though I have rarely felt that kind of judgment, I do care about my
influence when it comes to attendance. Having a prayerful heart, and positive attitude that does not "plan" to be
absent...helps me make it to services more often than I sometimes thought I could... on the other hand, some Wednesday mornings
I awake thinking - no problem - and I anticipate meeting with the brethren later that day - only to find out sometimes I just
cannot make it. -Laurie Reagan
Thank you so much for writing about these things. It helps
remind me that I'm not the only one who goes through these things. I get mixed signals from a couple of people at church.
But one brother mentions me in his public prayers and says things like, "help her to continue to be an inspiration and
encouragement to us" or something along those lines. He's the only one in the congregation that has ever - on his
own - looked up and tried to learn about my illness. At times I wonder if the "well" members in our congregation
really care enough to try to understand. The feeling that they don't really care that much is depressing, in itself. It's
like living in a world apart from the rest. THAT'S what causes some of the isolation feelings sometimes. -anonymous
Missing Services...Again
A Part or Apart
(The Feeling of Separation)
Pat Gates
Have you ever met with the saints on Sunday morning
after missing several services and hear them announce that "sister Smith" is doing much better now and is home from
the hospital and you didn't know anything was wrong with her? Have you been to a get-together with Christians and you're
sitting with a group of women who are discussing plans of going out together, wanting to be included and at the same time,
knowing you probably couldn't do it, even if they did invite you? Are you at home most of the time
on Sundays due to illness and around 11:00 or so, think about the church together, and you feel very alone? Do you find yourself
greeting a visitor, only to find out he/she have been attending the congregation for weeks or months, but you miss so much
you haven't been able to meet them, or have forgotten you met them? Did you miss the shower for one of the young women of the congregation? Did you miss the recent wedding? Did you
miss the get-together last week? The ladies class? The gospel meeting? All due to illness? It's a lonely, feeling, full of disappointment, isn't it? There is no cure because with chronic illness (or
caregiving) these things are going to continue to happen. While there is no cure, there may be some ideas we can come up with
to help feel more a part of the congregation, rather than apart from it.
WHAT WE CAN DO TO FEEL MORE A PART OF THE LOCAL CONGREGATION Ask your family member or one of the Christians what the announcements were. If someone needs a call or card, follow
through with that. Ask for taped sermons. Ask for a workbook
or class material and study the Sunday and Wednesday lessons each week at home. If possible, ask for a bible class in your home. If
you want visits, let it be known to the congregation. Don't
stop greeting "visitors" when you do get to go to services, even if you're not sure if you've met them before.
It's better to be embarrassed for a moment, rather than ignore them. If they say they have met you before or if they have
been coming for weeks, then explain your situation, smile and tell them to be prepared for another possible introduction in
the future! You can also ask someone who they are before you go greet them. If you feel like singing and reading the Bible when you are home on Sunday mornings, do it when the church is meeting
and your spirit will be "meeting" with theirs. As
far as missed weddings, showers, get-togethers, outings, gospel meetings, I'm afraid there's not much to be done about
that, but to bear the disappointment and to hope that next time, you can go. Unfortunately, this may be a part of life with
chronic illness or caregiving, and one we need to learn to cope with.
WHAT CAN THE FAMILY AND THE CHURCH DO TO HELP (I'm using the term "homebound" to also include those who have relapsing/remitting
illnesses where they may be temporarily homebound) Email
or snail mail a list of the announcements and visitors. The homebound person will be able to not only know what's going
on with others, but will be able to send cards etc. Visit,
call, send a card, anything to know they are being thought of. Make sure the person feels well enough for a visit. New members, introduce yourself. If you're new to the congregation,
introduce yourself to the ones who miss many services, don't wait for them. When they miss out on a get-together fix a plate for them or send home some dessert. The food isn't
so important, it's the thought that they were missed and thought about. If they are missing out on a party, perhaps you can take pictures to show the one who is homebound.
If they miss out on a wedding, perhaps you can suggest to the bride or the bride's mother to show some of the pictures
to the one who missed. When the homebound miss
out on an event that was important to them, it's better not to say, "You sure missed out on a great party" or
wedding, or whatever. If you say it like that, it's like rubbing salt in a wound. You can tell about the event, but leave
off the reminder that they missed out. This may seem trivial to you, but when someone misses out on many get-togethers, it's
never trivial to them. Ask the permanently
homebound if she would like to have a weekly Bible study in her home. Ask a couple of other women to join you. Perhaps you
can invite (and pick up) another older woman (or two) and bring them along, but don't judge the homebound to be spiritually
weak if she says no, she may not be able to physically handle having a study in her home. If the homebound has enough strength,
perhaps a few can go over and have a sing with her, but keep in mind, this could be too tiring. Make sure the person can physically
handle this... even listening to singing can be too tiring. And, as always, when you visit the homebound, listen to them. Their lives may not be all that interesting
to you, seeing they live within four walls, but that is their life and they want to share it. Please don't make promises to the homebound you don't plan to keep and if you do promise
something, and can't fulfill it, let the infirmed one know and apologize to them. I've been guilty of this one, several
times. We may have good intentions, at the time, but the person who can't do for themselves, is waiting and hoping for
your visit, your help or whatever it is you promised. ~~~~~~~~~~~~ It's easy to get caught up in "out of sight, out of
mind." But be assured, with the faithful who are homebound, the church is not "out of mind." It is a blessing
that is greatly missed and longed for, and it hurts to feel a separation from the Christians at the local congregation.
COMFORT AND STRENGTH
Oh Lord, have mercy
on me,
For I am weak, and suffer such pain.
Look on my distress and afflictions,
And make me whole again. Oh
Lord, my God, I cried out to You,
And You heard the words of my prayer.
Though my body is still weak and ill,
I now rest in Your loving care. Oh Lord, my heart trusted in You,
For You are my strength and my shield;
And
though my body be still afflicted
By Your grace, my soul has been healed. Blessed be the name of the Lord,
For
He answers whenever I pray;
And brings me comfort for the night,
And renews my strength for the day.
-Jennie
Flowers
The following quote reminds me of 9-11.
Remember how prayerful this nation was at the time? It didn't last. God never had in mind for His creation to only remember
Him when we are in trouble. "In
the beginning of the contest with Britain, when we were sensible of danger, we had daily prayers in this room for Divine Protection.
Our prayers, Sir, were heard -- and they were graciously answered. All of us who were engaged in the struggle must have observed
frequent instances of a superintending Providence in our favor. . . . And have we now forgotten that powerful Friend? Or do
we imagine we no longer need its assistance? I have lived, Sir, a long time, and the longer I live the more convincing proofs
I see of this truth, that God governs in the affairs of men. And if a sparrow can not fall to the ground without His notice,
is it probable that an empire can rise without His aid?...We have also been assured, Sir, in the sacred writings, that 'except
the LORD build the house, they labour in vain that build it.' (Psalm 127:1) I firmly believe this, and I also believe
that, without His concurring aid, we shall succeed in this political building no better than the builders of Babel. . ."
Benjamin Franklin's appeal to President Washington for a National Day of Prayer
Keeping an
Eye on the “I” in Isolation
by Pat Gates
Before I begin I want you to understand I'm
not discussing isolation that is forced upon us by illness. Often I need to be alone because outside stimulus of any sort
becomes too much. Nothing is wrong with needing to be alone, this article is written to admonish us to be careful that we
don't fall into a habit of isolation whenever we do have a choice. Also,
I wouldn't want this article to encourage any to judge those who are often homebound, when you don't know their situation.
There have been some who have been judged as separating themselves from others, when in truth, they want nothing more than
to be with others but are prevented, because of pain and/or weakness or other debilitating symptoms. In the world of chronic illness, isolation is often thrust upon us; we do not choose it,
but rather symptoms, at times, will prevent us from interacting with others. No matter if this isolation is on a temporary
basis during flare ups of symptoms that come and go, or if the isolation is ongoing due to being permanently homebound or
bedbound, there is the "I" to watch out for. Isolation can have the harmful side affect of the "I" syndrome;
this syndrome may continue on the focus on self as we grow more and more detached from the outside world. The "I" syndrome has damaging results in a continual thought of my pain, my feelings,
my suffering, my thoughts, my interest, my world and the "my" becomes so ingrained and habitual that "others"
finds no place in the world of isolation. The "I" syndrome does not have to be a part of involuntary isolation and,
thankfully, it can be controlled and cured if we have allowed it to invade our spirit. However, the longer we allow it to
remain, the harder it will be to cure, so the time to stop it is NOW! A man who isolates himself seeks his own desire;
He
rages against all wise judgment. Proverbs 18:1 Perhaps this proverb is describing
a conceited and self-willed man, who sets himself against and above public opinion, who takes no counsel from others, thinks
nothing of others but, in his isolation, is interested in only his private ends and fancies (thought taken from Pulpit Commentary).
This verse is not speaking against someone who can't help being isolated, but instead, chooses it. It is one thing to
be thrust unwillingly into isolation and even desire solitude now and then, and quite another thing to indulge in isolation
to the point it becomes your ongoing desire. Solitude and temporary isolation may restore body and mind, but ongoing self-gratification
in isolation by choice, depletes them. Unfortunately, living in isolation that is not our choosing, can bring about continual
desire for isolation and, like the proverb mentions, this can go against all wisdom and lead to harm. WHY WOULD WE BE TEMPTED WITH CHOOSING ISOLATION WHEN WE HATE HAVING TO BE ISOLATED
DUE TO CHRONIC ILLNESS? I
believe the continual desire to be alone comes about so gradual that before we know it, the desire is well-established. Perhaps,
during the times of forced isolation, life is easier in the sense we don't have to perform for others, spend our little
energy on other's needs, nor do we have to deal with hurtful words or being ignored by others. We may not consciously
think of these things, but we have felt the peace and quiet of solitude and we begin to surmise that for our own peace of
mind and lack of stress, this isolation is good for us. And this goes back to the proverb: "The man who isolates himself, seeks his own desire."
We become selfish. I'm not trying to be too hard on us, after all we can't help being sick and illness forces one
to think on himself, at times. Illness also forces us into isolation, but we need to be on the lookout for selfishness in
self-imposed isolation. We need to force ourselves to think on others and be with people when we can and not become content
in living for ourselves.
Keeping
an Eye on the "I" in Isolation ~ Part 2:
Beware of Self-imposed Isolation
by Pat Gates
(This article is not speaking to those who are bedridden
and totally homebound. It is not speaking to those who desire to be with others and do for others, within their capabilities,
but their illness prevents them from being with others. This is written to those of us who have remissions where we do
have the choice of getting out during those times.)
A man who isolates himself seeks his own desire;
He rages against all wise judgment.
Proverbs 18:1
As I wrote about last month, isolation,
at times, is a part of living with chronic illness we can't avoid. However, if we aren't careful, insecurity and fears
can develop to the point that we may choose isolation when we are capable of being with others. Isolation can bring about
the fear of people. The fact is, the more we do something, anything, the easier it is and the less we do it, the more difficult
it becomes. Sensory stimulation from visual, hearing and touch, as well as weakness, pain and depression can be major problems
at times and the best cure is isolation, but be careful that the isolation remains temporary and when remission comes,
get out as best you can and take every opportunity to socialize, even if it's initiating conversation with the bank teller,
the waitress, cashier etc. Fears of socializing during times
of frequent forced isolation can set in because we begin to think we no longer know what to say to people, we are afraid what
others will say to us, and with weakness, often it does take energy and work to be around others. But, we must especially
be on guard for the temptation to remain isolated to avoid feeling uncomfortable. If we fall into the trap of choosing to
avoid people, we will develop personality disorders, selfishness, feelings that will be easily hurt and may even fall into
the sin of not doing for others, and forsaking the assembly of the church. Depression, that is not organic, will set in and
lead to the false notion that we are sicker than we actually are.
What to do?
First, examine yourself honestly to see if you are
falling into this trap. It comes on so subtle, we may not have recognized that we have been making excuses for ourselves not
to socialize. If you find fears have set in, get to work, now! Force yourself to get out to the store, bank, with a friend
or whatever and initiate a conversation with someone, anyone. Quit thinking you'll say something "stupid," for
that's just a product of isolation thinking. And if you do say something that you think is dumb, well.... we all do at
times and in reality you probably didn't sound near as dumb as you thought you did! You really have to develop the "mental
shrug" of "who cares" and learn to laugh at yourself and move on. The more interaction you have with others,
the easier conversation will become. Now brain fog and memory
problems are a different matter. Most likely you will say something...let's just say...off the wall, but just explain
your brain isn't working altogether now and laugh about it. I was with some Christians yesterday I hadn't seen in
a while and they know me, but don't all about me, and I made a mess out of the conversation. I could initiate conversation
just fine, but if they asked about the past, those memory connections in my brain were definitely not working and I couldn't
answer some simple questions. I found myself forgetting what was just said to me and I had to admit I couldn't remember
what they said (sometimes we can fake it, but there are times we can't, right?!). Did I feel dumb? Yes. But, I laughed
about it, and carried on. I can't say I always handle it that well, but I do know if I get so embarrassed and down about
it, I will end up isolating myself. Force yourself to get-togethers
with Christians and just do the best you can with conversation. It will get better, the more you do it. If you can, have a
couple over you feel comfortable with. If you have to order take out, that's fine, or just have them over for coffee and
cake. Take the small steps, but don't stay there... keep forcing yourself into larger social situations, learn to not
take yourself so serious and you'll find yourself enjoying people once again. When physically possible, we need to remember we do have obligations as Christians to reach out to others. Self-imposed
isolation can bring about the sin of selfishness, an attitude of continual hurt feelings, fears that handicap us to the point
of total inactivity towards others, as well as total dependence on others, and will only contribute further to the loneliness
that often goes hand in hand with chronic illness. This article
is not meant to create guilt in anyone who can't help being isolated, but rather it is meant to keep us all watchful of
the fears that may set in during times when we confined to our home for long periods at a time. These fears can further immobilize
us and deceive us into thinking we have less ability than we actually do, during times of remission. Pray for strength and
remain watchful of the temptation of isolation.
The wicked flee when no one pursues... Proverbs
28:1 Guilt can cause this bizarre reaction, but so can an overabundance
of self-imposed isolation that leads to a continual thought on self (which actually goes back to guilt). What a waste of mental
and physical energy! The rest of the verse..."But the righteous are bold
as a lion."
Guilt can
cause this bizarre reaction, but so can an overabundance of self-imposed isolation that leads to a continual thought on self
(which actually goes back to guilt). What a waste of mental and physical energy! The
rest of the verse..."But the righteous are bold as a lion."
We are often trying to forget a loss, a fear, an abandonment, a concern, an abuse
by others, an error on our part. If we are trading these for a lack of self-awareness, honesty, courage, assertive action
--- we are co-dependent, a slave. Pity us. Either the world owes us better, or, if the world doesn't care about us why
should we care about us? THE RESULT? We lose our integrity, trust, and respect. This places us in denial of the responsibility
each of us has to accept the past, learn from the past, participate in the present, and contribute to the future. -selected,
edited
Logic
defeats anger, because anger, even when it's justified, can quickly become irrational. So use cold hard logic on yourself.
Remind yourself that the world is "not out to get you," you're just experiencing some of the rough spots of
daily life. Do this each time you feel anger getting the best of you, and it'll help you get a more balanced perspective.
Angry people tend to demand things: fairness, appreciation, agreement, willingness to do things their way. Everyone wants
these things, and we are all hurt and disappointed when we don't get them, but angry people demand them, and when their
demands aren't met, their disappointment becomes anger. www.apa.org There is also a cultural belief that
every problem has a solution, and it adds to our frustration to find out that this isn't always the case. The best attitude
to bring to such a situation, then, is not to focus on finding the solution, but rather on how you handle and face the problem.
www.apa.org Let
every man be swift to hear, slow to speak, slow to wrath; for the wrath of man does not produce the righteousness of God.
James 1:19-20 By your patience possess your souls. Luke 21:19
4 reasons
why your family won't help clean by
sarah aguirre
Reason
#1: Their way isn’t the right way. If you are
the type of supervisor who is never satisfied with other peoples’ results, you may be teaching your housecleaning recruits
to fail. Make sure your demands are reasonable. Your husband may not want to use the same method to scrub a tub that you do.
If the tub gets clean and you did not have to do it, does it really matter? If your family is failing at accomplishing the
job, they may not fully understand what you expect. “Clean the bathroom” can be a vague request. Consider posting
a list of what cleaning the bathroom really involves.
NOTE
FROM PAT: When Chuck cleans the bathroom IT IS CLEAN! He uses about 10 times the amount of cleaner than I do (the more the
better, right? :-) ... that's one of those times I have to close my mouth, 'cause he's kind enough to help and
that bathroom is probably cleaner than when I do it. I've just learned to stay clear of the area when the chemical fumes
are overwhelming me! And as far as our children
goes, sure they'll make mistakes, but with patient teaching and experience they'll learn. Nagging and constantly pointing
out mistakes or taking over their job will only discourage and they'll never learn.
Reason #2: They do not know how. Sometimes we forget that jobs that are easy for us, may be a mystery to the rest
of our family. (Especially if they are used to having someone else do all the work.) Consider a few days of side-by-side cleaning,
followed by supervised cleaning. Be sure not to fall into the trap of over criticizing.
WHAT
I DID WRONG (Pat): I remember when I first became ill Chuck wasn't the best grocery shopper around because he didn't
know what were good prices. I caught myself complaining that he had overspent on items and thought, What am I doing? He's
trying his best and being a good husband. So I decided to keep my mouth shut and now and then teach him patiently what is
the best thing to buy. Poor Chuck, after many grocery store stops 14 years later he's a good shopper! I also had to be patient when he prepared dinner. You know how
you prepare the food to time it all right so that everything ends up getting done at one time, so it will be hot when you
serve it? That doesn't come automatically and I would (too freely) give my advice and again, caught myself, and thought,
who cares if something ends up a little cold or overcooked, my husband is preparing dinner after a long day working! Shut
up! (By the way he has cooked some good dinners.)
Reason
#3: It’ll get done eventually. Nothing will happen if they don’t do it. Consider your family member's motivation to clean. Do they have one? If you have consistently cleaned their messes
for them, suddenly asking them to take responsibility may come as a shock. Soften the blow by holding a family council and
discussing the responsibilities associated with each family member. This is a great time to bring up consequences for not
following the plan. There may be natural consequences. If laundry is not brought to the laundry room every Monday, people
will not have clothes to wear. Other families may tie treats, allowances, or TV time to chore completion. It may take them
experiencing these consequences a few times to get the idea across
NOTE FROM PAT: Mom's help yourself by
not spoiling your children and taking over their responsibilities. Be consistent. If you say they will not get to do this
or that if their chore isn't done, don't back out (unless of course, it is something they couldn't possibly help).
Don't be concerned if you have boys, instead of girls, I had two and they were doing their laundry in high school. I've
seen moms who still do their adult male children's laundry and as long as mom will do it, they will take advantage of
that. If they don't have anything left to wear, that's their fault and if you will stay out of it, they will learn
you mean what you say. You need help. Teach your children, boys and girls, to help with the chores -- sure they may whine
and put it off, hoping you'll forget or give up. Don't let them get away with it. In the end it will be worth the
efforts for not only you, but your child, for they have learned responsibility.
Reason
#4: Everyone is too busy and overscheduled. If your
family is overscheduled and overwhelmed, you are probably feeling the pressure of not enough time in the day. If your family
is trapped in a time crunch it may be time to reevaluate priorities to insure that necessary maintenance for your home is
included.
FOR HOMEBOUND/BEDRIDDEN MOMS "Anybody can provide a casserole or do laundry or give a ride - but her job is to love
the children, to spend time with them, to have that very important intimate relationship with them," said Lee Tremback.
"That's the most important aspect of mothering."
"I'm always
telling my kids there are two things that are not broken in this body right now: My ears, because I'm always listening.
I'll turn the TV off and I'll listen and I pick up on what's going on in the other rooms. I try to listen - not
to be nosy, but to find out who's had the bad day, who needs attention. And my heart, knock on wood. I always say to my
kids, everything may be broken, but I can always listen to you and I can always love you." -mother with MS
Why is she looking at me like
that? It's Monday afternoon. I had been in bed all day Sunday, very sick, and while I'm much better
today, I still feel tired and sleepy. I needed to go to the grocery store so I quickly brushed my hair, without really fixing
it, put on a dab of mascara, jeans and a plain shirt and off I went. In the corner of my eye I saw the produce man glance
towards me a couple times and on the third time he said, hello. As I went through the check out the cashier who was about
my age, kept glancing at me and as the register did it's last adding up, she stood there and just stared right at me and
I smiled and she smiled and she handed me the ticket, saying "have a nice day."
As I got in the car to leave I thought
about the produce man and the cashier and because I'm very aware of my new haircut (which is much shorter than I had been
wearing it), I looked in the review mirror to see what kind of shape it was in since I didn't really put that much effort
into it. Well, it wasn't great, but it wasn't worth any extra stares so I started to dismiss my thoughts and then
I realized how much emphasis we put on looks other people give us when we don't have a clue what's going through their
mind. So what WAS going through the produce man's mind and the cashier's? It could have been: "She looks like she hasn't slept in a week!" "If only she'd fix up her hair!" "I wonder where she got her haircut.
I would like to do the same with my hair." "This woman looks like she could use a hug."
"What a pleasant look this woman has." "What a grouch
this woman must be!" "She could stand to lose a few pounds". "Poor thing." or was the cashier and produce man thinking: "It's my job to say hello so when she looks at me I will." "I wonder
if I left the iron on." "I wonder if I need to put out more squash." or are they thinking: 0...zero....zilch...nada...nothing. Do
you see where I'm heading? We can worry so much about looks and stares from others when, in reality, we may be the last
thing that person is thinking about. Or, they may be thinking something good about us. When we feel too tired or sick to fix
ourselves up and then think everyone is looking at us and thinking how bad we look, we are just doing a whole lot of useless
worrying. What's much more important than this is when a family member or a brother or sister
in the congregation happen to be staring at us or give us a double-take or happen to look our way and because of our self-consciousness
we come to the conclusion they are thinking something bad about us. Perhaps it wasn't a look, perhaps it was a word said
in such a way that it could be taken two ways and we choose the take it the worst possible way. We
are greatly misjudged by others at times, and if we aren't careful we can greatly misjudge them as well. We want fairness,
let's be fair ourselves.
What next?
Do you ever have this feeling? I do. Being problem-free or
near to it, seems almost non-existent in my life. If, at a certain point, all is well and I feel that refreshing relief, the
thought of "what's next" comes in my head. Actually, in my families' life, due to major illnesses, the reality
is that something big is usually just around the corner. But it's no way to live in worry of what's next. Here are
some suggestions for us to work on: Live for today, not the
pains of yesterday, nor of the fears of tomorrow. Therefore do not worry about tomorrow, for tomorrow
will worry about its own things. Sufficient for the day is its own trouble. Matt 6:34 Talk to God about your fear of what's next. Be anxious for nothing, but in everything by
prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses
all understanding, will guard your hearts and minds through Christ Jesus. Phil 4:6-7 Work on spiritual strength during the easier times. Unless Your law had been my delight, I
would then have perished in my affliction. Ps 119:92 Work
on physical strength during the easier times. Then the devil left Him, and behold, angels came and ministered
to Him. Matt 4:11 Enjoy the peaceful moment! Even
if it's for one day....one hour. You will keep him in perfect peace, Whose mind is stayed on You,
because he trusts in You. Isa 26:3
"THE SPOON THEORY" A SIMPLE ILLUSTRATION
TO EXPLAIN TO OTHERS WHAT IT'S LIKE TO LIVE WITH DAILY LIMITATIONS (this is excellent!)
I just discovered the "spoon theory" by Christine Miserandino on the
site, http://www.Butyoudontlooksick.com. It is copywrit but if you click on the URL you can read the article. When I've tried to explain chronic fatigue in the past I would use the illustration
of a glass of water. Each day you are allotted a certain amount (sometimes more, sometimes less) and each thing you do, a
bit of that water is poured out and when it's gone, it's gone. There's nothing left in the glass for the remainder
of the day. The "spoon theory" is a much better illustration and one that the listener is playing the part of the
one who is ill and yes, actual spoons are involved. They even have a business card (prints out 10 to a page) you can print
out to hand out to others so they can read the "spoon theory" and try to understand your limitations. Here is a quote from the article: When other people can simply do things, I
have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick
and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".
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