This is an awesome piece, thank you! But it brought back memories of
the days I had to force myself to ask for help... and no one came.
It took so much courage, I had to talk to myself for days on end to
get to the point where I could actually pick up the phone and ask
for help. I only ask of those who had already offered... you know
the lines... "let me know if I can help" , "let me know if you need
anything", or "is there anything I can do?" When I finally asked,
the excuses came rolling in... a couple generous people said they
would, and completely failed to show up... no call...no nothing. I
went 3 days without my pain medication because I could not get 2
miles to the drugstore... Not only were these people who had offered
help, they were people I had often dropped everything to do
something they asked.
I had always thought thats what people do... someone is in need, you
help. I assumed if, Heaven help me, I was ever brought to my knees
by an accident or disease, those people would be there to give me a
helping hand. Not that I thought they owed me, just that I thought
that was the relationship... the dedication of a true friend. I had
to learn the hard way that it was all ONE way... it grieves me to
think that my "friends and family" don't have the heart to help me
in my only time of need. I am sorry for them because they will never
know the delight of reaching out and helping someone. They will
never know the gratitude I'd have shown...
I wonder if they know that my world crumbled TWO times... once when
the disease took control and once when I learned that those closest
to me were not the kind, generous people I had assumed. And of those
people, two were my very own sisters... I had a false definition of
our family for so long and then it just crumbled to the floor, like
a broken mirror... with the jagged pieces sending back a broken
image of my own being. That was reality...

--- In HoustonTXLyme@yahoogroups.com, joyce
wrote:
> I had this is some "old" files -
> j
>
> Please read this,
> I still have tears streaming from reading it. I am trying to work
and function and it is so frustrating to deal with rude hateful
people (and even those who do love me) who are clueless to what I
deal with 24/7 - I LOOK fine. I wish I was.....
>
> I know all of ya'll are busy but, somebody posted this on the
lymenet and I never really thought of this in such an organized
fashion. Anyway, in case you ever wondered how a person might
describe a chronic illness . . . here you go and, for those of you
who are chronically ill -- you'll be amazed at how closely this
describes your world!
>
> Hugs and kisses, Sherry
>
> What Is A Chronic Illness, Anyway? (author unknown)
>
>
> A chronic illness is a disease or disorder that a person has to
cope with on a continuous basis. Many people become so ill, they are
unable to work and are forced to give up activities they have always
enjoyed. Often their illness goes undiagnosed for years, leaving
thousands of people frustrated, depressed and without answers to why
their bodies will not cooperate with their desires.
>
>
> But, They "LOOK" Fine! How Can They Be Ill?
>
> Many chronic illnesses such as: Arthritis, Chemical Depression,
Crohn's Disease, CFIDS, Cystic Fibrosis, Diabetes, Fibromyalgia,
Heart Disorders, Hypothyroidism, IBS, Lyme Disease, Lupus, Multiple
Sclerosis, Neurological Disorders, Osteoporosis, Parkinson's,
RSD,
Women's Chronic Disorders and many, many others cannot be seen with
the naked eye, but are nevertheless persistently keeping the person
from enjoying life the way they once knew (this is only a sample of
the dozens of illnesses which can be debilitating and not intended
to be a complete list)!
>
> Unfortunately, their families and friends are rarely supportive
and understanding, because they do not see a broken bone or bleeding
head to confirm the complaints. However, do not expect to see a
disease that lives below the skin, because most illnesses are
invisible until the person has had chemo or organ failure! Your
friend or family member needs you to believe what they are saying is
true, without judgment or question.
>
>
> So, They Have "Good" & "Bad" Days, Right?
>
> Actually, not everyone with a chronic illness has the same
symptoms or degree of symptoms; yet, there are basically three
stages in any chronic illness:
>
>
> 1) THE EARLY STAGE: This person may notice occasional symptoms or
lack of energy. They start experiencing setbacks from activities
which previously never took a thought. If diagnosed in this stage,
which is rare, many can get help from their doctors and proper
nutrition to cure or prevent further progression of the disease.
This person has mostly "good" days with occasional "bad" days.
>
> 2) THE MIDDLE STAGE (or the Relapsing/Remitting Stage): This
person may have frequent bouts of symptoms and is forced to make
limitations for themselves in order to avoid extreme fatigue and
relapse of illness. They reluctantly begin discovering that the
simple things they used to enjoy, now must be done with care or
sacrificed completely. In this stage, some can lower the frequency
of relapse and progression of the disease with help from their
doctors and proper nutrition. This person has both "good" and "bad"
days, depending on activity and stress.
>
> 3) THE LATE STAGE (or the Chronic/Progressive Stage): This
person's disease has progressed to the point where it does not
remit. They live each and every day with symptoms that feel much
like having the stomach flu, complete with extreme to unimaginable
fatigue, muscle aches, weakness, nausea, cognitive difficulties,
dizziness and/or pain.
>
> When they push themselves to do what used to be easy, like dusting
a piece of furniture, going to a relative's house or doing a load
of
laundry, they pay a high price, because their symptoms worsen to an
unbearable level for days and even months. In cases like Multiple
Sclerosis, the treating drugs available are affective only for
persons in stages 1 and 2. This person does not have "good" days,
only "bad" days and "horrific" days.
>
> But, What If They "Give In" To The Illness?
>
> When a young ice skater named Nancy Karrigan was assaulted and
suffered a leg injury, she faced the possibility of losing all of
which she had dreamed; the whole world cried with Nancy, because it
could have meant the end of her skating career! Yet, when a person
loses their job or is forced to give up their career due to illness,
for some reason, people often treat them like they are choosing to
do so; and, they are often insensitive to the fact that the sufferer
has lost all for which they have worked, planned and hoped for their
future.
>
> Most people do not "give in" to illness; in fact, it is ingrained
in our nature to fight to survive as hard and as long as humanly
possibly. If you believe that your loved one is "giving in" to the
illness, because they have given up their usual activities, this is
just your perception of how they are handling their limitations.
>
> When a person first experiences the effects of a chronic illness,
they have a fantastic attitude about conquering it; they feel strong
and invincible to its grip. Even if the disease progresses, they
will continue to fight for their right to live the way they planned
their lives to be; and, they will stay persistent in the battle
until their bodies force them to make limitations.
>
> Creating limitations for oneself is one of the hardest things a
person can do. It goes against everything we are and everything we
ever hoped to be. No one wants to be sick and no one ever chooses to
give up those things in life which bring such joy. Yet, these
limitations are mandatory in managing a chronic illness; so, respect
their new boundaries by acknowledging their losses and supporting
their need to say, "No."
>
> We, as chronic illness sufferers, do not want to give up; we want
to laugh, smile, look our best and enjoy life; after all, it is our
incredible courage, perseverance and persistence to fight for our
lives which make our painful disabilities seem invisible to the
naked eye.
>
>
> Well, I Still Don't Understand!
>
> At least once in your life, you have probably experienced having
to stay home from work or school, because you were too sick to go;
incidently, I have yet to meet someone who has a cold or the flu
tell me they are having the time of their lives and enjoying every
minute of it! Or, you may have been hurt in an accident and were
forced to give up activities you loved for weeks or even months; so,
you know how stressful, depressing and frustrating being unable to
do what you want to do can be!
>
> Now, when I refer to being sick, I am not talking about feeling
just a little "under the weather" or just not "up to" going to work
that day. I am talking about being so sick you can barely sit up or
talk, having a fever that makes every muscle ache and your bones
feel like they are being crushed. Then, when you try to get up to go
to the bathroom, your head pounds, your body feels like it weighs a
ton and you become dizzy and nauseous.
>
> Just imagine feeling that way every single day, week after week
and year after year. True, some chronic illness sufferers have a
few "good days" in between, but many do not have any at all! So, if
you see them out and smiling, does that mean they are having a "good
day?" Not necessarily! Many times they cannot wait for a "good day"
to get out, because they do not have them; thus, they make the
sacrifice, sitting there in horrible agony and knowing they will pay
dearly for it later!
>
> No human being can be at peace with being sick day in and day out!
In fact, most people become very frustrated and impatient after just
a few hours; then, if it lasts a few days, they become panicked and
angry about missing work, school or other activities; next, they
become depressed and act like a week out of their busy lives is the
end of the world! Yet, they often treat their loved ones like losing
months and years out of their lives is no big deal! So, why would
you expect your loved one to be happy with losing years of their
lives, when you cannot stand to even lose a few days?
>
> It is true, you will never fully comprehend what it is like to be
chronically ill, with all of the loss and pain it poses. You will
never know what it is like to feel horrible every day and you will
never have a grasp at what it is like to watch your lifetime dreams
come crashing down forever. So, stop using the excuse that you do
not have understanding and start focusing on whether or not you have
compassion!
>
>
> In all, your loved one just wants you see their courage in
enduring a life of feeling sick, achy and exhausted all of the time;
and, you have the capacity to know you would not want to feel this
way every day yourself! You know how horrible it is to be sick and
forced to put your life on hold for a while, so why don't you
tell
them how amazed you are at their strength and perseverance!
>
>
> It Seems like I Am Always Saying The Wrong Thing!
>
> What can sometimes be even harder to bear than the illness itself,
is feeling alone in the daily struggle and mourning of lifelong
dreams. As pieces of oneself die off bit by bit, isolation consumes
them when others refuse to affirm their pain. By repeatedly trying
to "cheer them up" and make them see the "bright side" you are not
validating their pain, but instead saying, "I don't want to hear
the
truth" or "your losses don't matter." On the other hand, if you
acknowledge their losses, they will no longer be compelled to gain
your belief by having to explain their situation over and over
again.
>
> Resist the temptation to make a visual diagnosis by saying, "gee,
you look like you're feeling good today" or "hey, you must be
doing
well." They may look like they are feeling well, because there is
joy in their face from seeing you; however, your comment will only
make them realize they are alone in their battle, since you are
evidently unaware of their insurmountable hurdles.
>
> In other words, by rebutting their answers with, "But you LOOK
good," your friend really hears, "But, I don't believe you,
because
you look fine to me." Instead try, "I am so glad to see you," "wow,
I can't imagine what you go through, you are amazing!" "you look
nice today," or "how can I pray for you?"
>
> Encourage your loved one by affirming your trust in them, loving
them and showing them that they are still just as valuable to you
even if they can no longer do the things they used to do; your
willingness to acknowledge their losses will give them the strength
and positive attitude they need to fight the illness, instead of
wasting their energy fighting with you to believe. They are not
seeking your pity or sympathy, they simply want your compassion;
some will need your help, just listen, they will tell you how. We,
as chronic illness sufferers, do not want to give up; we want to
laugh, smile, look our best and enjoy life; after all, it is our
incredible courage, perseverance and persistence to fight for our
lives which make our painful disabilities seem invisible to the
naked eye. "Learn To See With Your Ears!"





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