|
 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)
"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".
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.
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
"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.
"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."
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
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
Living with Interstitial Cystitis and Fibromyalgia – one approach By Joyce Jamerson
In the world of auto-immune difficulties, if you have one,
the possibility of developing another is very common. My first diagnosis, in 1995, was Interstitial Cystitis.
At that time, IC was barely recognized among physicians. Most females have struggled with a urinary tract infection
from time to time, but urinary pain and cramping without bacteria was unexplainable and therefore, thought to be in your
head.
Through
the research of Dr. Clive Solomons, IC was given a name and the Vulvar Pain Foundation had its birth in 1992. Because
his research came to involve more than just vulvar pain, it eventually became known as the Pain Foundation. You can
learn all the technical data by searching key words: interstitial cystitis and vulvar pain.
Symptoms involve pain anywhere below the waist!
The bladder wall becomes inflamed, causing urinary burning, itching, stinging and area tenderness. Muscular pain, digestive
problems, yeast infections and joint pain are also a possibility. To put it in daily terms, because of the pain during
a flare, sitting can be difficult, sleep may be a problem and intimacy at best is painful if not impossible.
Pain and fatigue and
urgency can encompass your entire body and anyone with this diagnosis surely knows the location of many public restrooms,
if indeed, they are able to be out and about.
My urologist had little to offer
that was non-invasive, except anti-depressants and an antihistamine. He suggested a trial of Elmiron, but it was of
little help, so I used a low dose anti-depressant for almost two years and finally tapered off because it seemed of little
value. Because of dietary changes, weight loss is common. (Some may actually gain weight if they become more sedentary
because of the pain.) It doesn’t take long to realize that acidic foods can trigger pain episodes, so mustards,
vinegars, many nuts, citrus, tomatoes, pineapple, etc. need to be avoided. Low carb meals and a reduction in sugar
are especially important if there is yeast involved. Cranberry juice, in this instance, is not helpful and in
fact, may actually complicate the problem. Pain flares can be soothed by stirring 1/2 teaspoon of baking soda into a
large glass of water to alkalize the body. Studying the acid/alkaline balance in the body may be of benefit. Because
of our American diets, we frequently are too acidic – a good breeding ground for ill health.
Later, while visiting a church in another town,
I overheard a woman describing her health problems to a friend. I asked, “Do you have interstitial cystitis?”
She was surprised that I even knew what it was, and we immediately began to compare symptoms and treatments. This was
before the conveniences of computers and internet access were affordable. Weeks later, she sent me a paper; I believe
it was by Dr. Solomons, on how food oxalate can trigger pain.
I didn’t know what an oxalate was but soon learned. Oxalate is a
powerful irritant that can cause excruciating burning in tissues. That article eerily described my health problems.
Since I was trying to improve my heath through good nutrition, my diet had been heavy with spinach salads, sweet potatoes
and wheat bran – all extremely high in oxalate! You can learn all about this on the Pain Foundation’s web
site – www.vulvarpainfoundation.org I consider the oxalate connection the single-most important thing
I’ve learned in dealing with these problems.
So I started playing with my food – in a good way. No sweet potatoes
for two weeks, then add them back in quantity. Pain would increase, most of the time starting in the left calf and radiating
throughout my body. On and on it went, until I had a list of trigger foods and started avoiding things that would bring
the onset of pain.
Since
my food base was shrinking, (my husband says “if it tastes good, I have to spit it out”) I tried new things.
I’ve always liked to cook, so my kitchen became a laboratory. Over the years, I’ve whittled and improved
my diet until I’m fairly comfortable most of the time although I fatigue easily and have to pace myself. My diet
is not only gluten free, but also free of soy (high oxalate), dairy, and most sugars, as well as staying low in oxalate.
Oxalate triggers my pain like nothing else. You can find a chart of low-medium-high oxalate foods at: http://www.branwen.com/rowan/oxalate.htm
Next:
The fibromyalgia complication
Because
of pain in all four quadrants of the body, the diagnosis of fibromyalgia was added. Fibromyalgia pain is widespread,
with 18 tender points throughout the body. The diagnosis of fibromyalgia is usually given if at least 11 of these points
are tender to the touch upon examination. It is a misunderstood condition because patients generally look healthy
but in reality are living with daily exhaustion, generalized aching and sleep disturbances. Many have acid reflux and
IBS symptoms, as well.
Although
eliminating some foods did provide some relief of IC; muscle and bone pain, IBS, fatigue and tissue pain were still a valid
part of life. Again, the recommended treatment was anti-depressants and sometimes steroids. Since my system is
so touchy, reactions to medication were common and I couldn’t handle being drugged to the point of life on the couch.
The rheumatologist told me, “If you’re not going to take this medication, then I can’t help you.”
Life was dismal, painful and complicated by the onset of menopause and grief over the death of our 19 year old daughter.
She had died suddenly in 1993 due to a brain hemorrhage. For one and a half years, I followed the guaifenisen
treatment as outlined by Dr. Paul St. Amand. There are many dietary intricacies to that approach, and each patient will
have to decide if it is valuable for them. You can learn more at: http:fibromyalgiatreatment.com/board/
In 2000, an allergist discovered a slight allergy
to wheat and corn, so those things also had to be eliminated. Since I could no longer eat wheat, I switched to rye crackers.
Those brought on some of the most intense bone pain I’ve ever experienced. Going from doctor to doctor, I tried
everything from conventional medicine to acupuncture and holistic medicine. Although I learned a little more about my
body and its needs, nothing was of lasting help. In 2004, Celiac disease became my next diagnosis. (That’s
another article!) With Celiac, you have to avoid the protein that is in certain grains: rye, barley and wheat.
Oats are acceptable only if they are grown in dedicated fields; most American grain crops are rotated, contaminating our oats
with wheat.
Since
medication is such a problem, dietary control is my choice. It’s not easy or convenient, but I firmly believe
that those with autoimmune difficulties owe it to themselves to go wheat free for at least 6 weeks. What is six weeks in the
grand scheme of things if it could mean a reduction in pain and a more comfortable life? (Slowly removing high
oxalate foods may also bring benefits.) Wheat and dairy are notably problematic, as are high glycemic and sugary foods.
Acid/alkaline balance is also important. For more tips on improving IC with some natural approaches, go to: www.evenbetternow.com This site provides some articles on IC & bladder health, as well
as acid/alkaline balance and digestive health that might be of interest. Many natural approaches can be found on the
internet; some good and some not so good. This is not a recommendation of any product. Each must do his own homework
and decide if a natural approach is more/less beneficial than our standard Western medicine.
Only small amounts of honey or maple syrup
are my sweeteners and the jury is still out on artificial sweeteners so I do not include them. Frozen veggies are the
next best thing to fresh; I try to avoid food in cans or boxes, except for a few canned fruits. As much as is possible,
prepare meals with fresh ingredients. Don’t forget to exercise. Gentle walking, yoga and stretching are
all helpful.
Because
I am post-menopausal, hormone replacement has been beneficial. Each person has to study the pros and cons and make a
decision. My decision was for low dose bio-identical hormones, rather than the pre-fab type. Estrogen cream also
helps soothe dry, burning vaginal tissues. Valuable items in my medicine cabinet are: Atarax (antihistamine) as
well as a dose of baking soda for IC flares; Azo for soothing a touchy bladder, Darvocet for pain episodes and Flexeril at
night for restful sleep. Epsom salts baths (with baking soda) provides a soothing, relaxing respite for sore, aching
muscles. Vitamin supplements are valuable, but each has to do their own research. What works for one, may not
work for another. When feeling better, the temptation is to try forbidden foods again. I’ve done my share
of this, but quickly regret it and return to the strict regimen.
If you are not a person of will power, this approach will never work for you.
It’s not for the faint hearted or easily discouraged, but you may reap great benefits from your efforts.
It’s kind of like
the Christian life, isn’t it? Not for the faint hearted but the rewards can be out of this world!
How
to Handle People
Who Do Not Care to Understand
Pat Gates
FROM THE MAIL: A topic I would like discussed on this page is: How to handle people who do not care
to understand your situation and could never begin to understand what your life is truly like. I usually just do not
bother with those kind of people, but treasure the friendships of people who do understand and have compassion in their hearts
for me.
______________•______________
Like I've said many times since starting this publication,
being misunderstood or un-understood (sometimes I have to make up words), is what I hear most often from those with ICI. Why?
Because it hurts. Because it never ends. Some of us live years with chronic illness and we've come to the conclusion we
are finally understood and accepted and when we least expect it, there it is, the comment... the comment that reveals the
true thoughts about how that individual preceives our lifestyle and our thought-style (another made up word). 95% of the time
we are much better off than we realize in the eyes of the Determinator (the one who determines just how sick or well we
really are). Rarely are we worse off in their estimation. This is due to the But-You-Look-So-Good syndrome we live with
as well as the Sit-Around-Do-Nothing-As-You-Look-So-Good syndrome. No one can look so well and feel so bad--at least that's
what the Determinators believe.
Some "normals" are just ignorant and they will learn one day. Others
refuse to learn. There are even some ICI'ers themselves who misjudge other ICI'ers and don't seem to learn
from their own experience with this. The writer of the note said she doesn't usually bother with those who refuse to understand
her and that's probably the best thing if you have that choice. As she said, it's good for us to treasure our
friends and family that do trust us and who try to understand and support us.
However, some ICI'ers
have close family members in their physical and spiritual family who they have to encounter, sometimes on a daily basis and
may not be able to avoid the comments of distrust. So what do we do with those who REFUSE to try and understand us?
- Don't
pretend to be well to make them feel better about themselves.
- Don't pretend to be sick when you feel better because you are afraid
they won't believe you when you feel worse.
- Don't be embarrassed around them and begin to make excuses for yourself.
- Don't feel like you
always need to explain yourself.
- Don't
allow their disbelief to influence you to doubt yourself.
- Do
be honest with yourselves and with them. That doesn't mean you have to tell them what you think and how you
feel, but if you are feeling sick, don't hesitate to say it. If you are feeling better, don't hesitate to
say it. In other words, don't allow their disbelief to dictate how you must respond and how you feel about yourselves.
- Do make a choice whether
or not you want to reveal to them how you are feeling. Most often it's best to keep quiet if they have proven
themselves to be a doubter. Your silence may prevent further hurt within you.
- Do try and keep your hurt level down by dismissing their doubt
from your mind and don't dwell on it. Satan will be there trying to tempt you with anger, discouragement, and self-doubt
--- don't allow him to do that.
- Do treat the doubter as we are told by God to treat everyone -- to do good, to be kind, and
not to take vegeance.
- Do
remember God knows your heart, your intentions and your body. If everyone in the world doubted you and refused to understand,
you always have God to lean on, who knows you and will strenghten you.
If we don't talk about
the illness, everything must be OK.
If we do talk about it, "Complaining," is what they say.
If we endure pain silently, it can't be all that bad,
If we don't, we "Mope, and shouldn't be
so sad."
If a better day comes, how good it is to finally get out,
"See, that's
all you need to get better," is what the doubters shout.
So what do we do with their disbelief that
often causes fear?
We dismiss their doubt and live without the hurt that lingers near.
Pat Gates
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I realized something
about myself, recently. I had been pushing myself and ignoring how I really feel in order to try to be the well person others
want/expect me to be. Just the other day I encountered a Doubter and a Determinator (see article above) and rather than go
along with what they demanded of me, with confidence, I calmly told them I was physically incapable of what
they wanted and expected from me. It felt so good to just state the truth without going into a big speech of defending myself
as well as not giving in to how they presumed I should be. A good, short, confident response, put nicely, is basically all
we need, most of the time. Notice I didn't say it will always be accepted, but rather it is all we need.
-Pat
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What's your
fatigue level?
"In 1995 I called the CDC and asked them for data from the polio epidemics in the 1950s, year by year, and discovered
that the attack rate of M.E. [Chronic fatigue syndrome pg] was about fifteen times higher in the late 1980s-early
than the attack rate of polio in the early 1950s. We don't get paralyzed in the formal sense; we just drop out and disappear."
-Hilary Johnson
"The fatigue is not everyday tiredness, experienced after an energetic day’s gardening. It is an
exhaustion of body and mind so profound that it becomes a concerted effort to think, walk and sometimes even move, sit, eat
or breathe.’’ M.E. sufferer
Friendship For Cindy Granke, from
Pat
Thank you for being my friend. You respect my need for confidentiality
so I can tell you anything. You allow me to complain when I've had a bad day -- you forgive me when I go overboard
with complaining. Even when you have so many physical problems, yourself, you listen and put me first, as well as remember
me in your prayers. You recognize my weaknesses as well as my strengths and because you are so very understanding,
I know you continue to love me when I'm down in the valley or on top of the mountain. With you, I can feel completely
free to be me. You have been a good friend and I thank God for you.
Your friend and sister, Pat
A friend loves at all times.
Proverbs 17:17
There is a friend who sticks closer than a brother. Proverbs 18:24
Faithful
are the wounds of a friend. Proverbs 27:6
Ointment and perfume delight the heart,
And
the sweetness of a man’s friend gives delight by hearty counsel.
Do not forsake your own friend or your father’s friend,
Nor go to your brother’s
house in the day of your calamity;
Better is a neighbor nearby than
a brother far away. Proverbs 27:9-10
As iron sharpens iron,
So
a man sharpens the countenance of his friend. Proverbs 27:17
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True friendship isn't about
being there when it's convenient;
it's about being there when it's not.
A friend understands
our silence.
Friendship is born at that moment when one person says to another,
“What! You, too? I
thought I was the only one.” - C. S. Lewis
Prosperity begets friends, adversity proves them.
Friendship is a single soul dwelling in two bodies.
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"By friendship you mean the greatest
love, the greatest usefulness,
the most open communication, the noblest sufferings,
the severest truth, the heartiest
counsel, and the greatest
union of minds of which brave men and women are capable."
If you were another person would you like to be a friend of yours?
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Around the corner I have a
friend,
In this great city that has no end.
Yet days go by and weeks rush on,
And before I know it a year is
gone,
And I never see my old friend’s face;
For life is a swift and terrible race.
He knows I like him just as well
As in the days when I rang his bell And he rang mine. We were younger then—
And now we are
busy, tired men—
Tired with playing a foolish game;
Tired with trying to make a name. “Tomorrow,” I say, “I will call on Jim,
Just to show that I’m
thinking of him.”
But tomorrow comes—and tomorrow goes;
And the distance between us grows and grows. Around the corner!—
yet miles away...
“Here’s
a telegram, sir.”
“Jim died today.” And that’s what we get—
and deserve in the end—
Around the corner,
a vanished friend. - Henson Towne
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A Friend
Also Loves
Mr. Hyde
What a lot of people don't know is that a chronic illness can
change your personality. Sometimes I feel like Dr. Jekyll and Mr. Hyde. When I am well I can be a very friendly and nice person...then
the illness kicks in and I turn into a whole other person. I used to be the most patient person in the world now I seem to
be the most impatient person in the world. I used to be an extrovert outgoing, and love being around people. Now people just
exhaust me and though I like being around people it can be too much for me. -selected off internet
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