Most of us with
FM, discover something
rather interesting. That we seem to "get better" as time goes on.
Almost all of us can say that we are not as bad off now, over all, as we were
years ago, when we were first diagnosed with FM.
Now, this brings
up several issues that
need to be covered, not so much about ourselves, but often about how
others feel about us and what they expect of us.
For most of us,
the main reason we are
"better" off is due to the simple fact we have learned, as time has
gone on, how not to wake the dragon. Meaning we have learned to make
changes in how we lead our lives, that let the dragon that is FM at
least doze, if
We have learned,
not to overdo for
example, even when we feel relatively well. This is frustrating and a
hard one to learn for the simple reason when we do have a "good" day
we tend to try and "make up" for all the things we let slide on the bad
This is a
mistake however, as we just
end up going down for another round of pain and misery. ( See Push crash, on site link )
So we learn,
once the Dragon is napping, not to walk over and kick it and wake it up
again. There is a problem with this stance however, not so much for
ourselves, but for others. Friends, family and even our
Doctors can all have issue with this stance.
society may note the
improvement and often makes the mistake of thinking we are "better" and
therefore, they might cut back on the very medical support we may need
maintain that state of "better." Our friends and family may take
notice and start piling more things on our plate for us to do,
and or cut back on the things they were handling for us, since we
"seem" to be better.
perfectly understandable, from
their point of view, but it is a mistake for them to make the
assumption that just because we have finally reached a point were we
are not entirely miserable everyday, means that the FM has gone away.
As it will certainly prove to us, the first time we try and push
ourselves to do things that will wake it up.
We have learned
what things help our symptoms and what makes them worse, when it comes
to our diet, or
sleeping patterns for example. We have learned what actions will
demand a high price in pain and have figured out other ways to do
we avoid doing them. Learning to live with FM is an on going
process, of self education.
For each of us,
that education is one
of a kind, as none of us reacts the same way to all things. We cannot
even be positive of the same reaction to our behaviors or actions on
any given day as
the daily limits, if you will, can change without notice with FM. They
can change on us, day by day or even hour
This is tough
one to figure
out, as we have to learn to recognize some very small signs. We tend to
that we are poking the dragon and to stop doing whatever it is, so that
can doze on, rather than fully wake it up and have it start biting us.
We become the best detectives of our own bodies and we can often learn
to see even
the small signs that tell us, stop doing X or we will wake the dragon.
make the mistake of
thinking, that just because we have somewhat tamed the beast, that we
have bested it. This can lead to a very self delusional state called (
on site link. ) A behavior that
anyone with a disability is familiar, as nearly all of us have tried it
at some point.
This "put on"
front can make those
around us more comfortable, as it presents them a "face" they can deal
with. Which, while it might help others it does little for us, besides
keep the dragon of FM awake
and lively for most of us.
of understanding by others:
If we avoid the
things that aggravate
our FM and do not attempt to do more than is reasonable for our
condition, we often can maintain a state of "better" provided
that we keep
right on NOT doing the things that will aggravate it. This
is the state that is the most difficult for others to
As we seem to be
they assume we are
better and their expectations of us rise. This can
lead to some serious problems when we try and explain that no, we
cannot do .... fill in the blank .... action, despite the fact that to
all appearances, we seem as if we should be perfectly able to do so.
This so called
"appearance of normal" leads
others, from family, to our doctor to believe we are "faking" the
extent of our disablement, to avoid work or actions that we do not want
do. It can lead others to believe that we are just "lazy" or trying to
shirk our responsibilities.
unfortunate side effect can be the
hardest hurdle of all for a person with FM. We have finally gotten to a
point where we are not in intolerable pain every waking hour and
society as a
whole, suddenly wants us to tempt fate and behave "normal" again. And
since we, if we are wise, refuse to do so we must be malingering
we appear to be in "good" shape. ( You
look fine, and why that is a lie, the face of FM on site link
"Malingering is a
medical and psychological term that refers to an individual fabricating
or exaggerating the symptoms of mental or physical disorders for a
variety of motives, including getting financial compensation (often
tied to fraud), avoiding work or military service, obtaining drugs,
getting lighter criminal sentences, trying to get out of going to
school, or simply to attract attention or sympathy. " Wikipedia
So, there are
those who have a short
term problem that will heal, who will "milk" the disabled state for
long as possible. Even to the point doing hurtful things to themselves
the "benefit" of being injured, coming. Now, anyone who deliberately
extends a disabled state when they have the option to be fully healed,
some serious maturity and mental issues, it goes almost without saying.
since there are people who do
this and it is commonly known that there are such people, it
that we with FM, fall into the same category. This is
despite the fact
that our FM is not yet able to be cured and appearances not
withstanding, has NOT gone away.
describing a .... situation
which presents the illusion of choice, while preventing any real
We with FM, find
ourselves in what is
called in America, a catch 22 situation, meaning ... if we seem to be
normal, we are expected to behave as if we are healed. Yet if we
attempt to do such a thing, we will fall right back into the round of
pain and perpetual flares, that we were experiencing at the time we
were first diagnosed.
The reason we
had so many flares then,
is we did not know what we were doing that was setting them off. We
did not understand the disease. ( See things to avoid, to help
prevent flares, on site link )
But, since we
have learned to make the
behavioral and other life style or dietary changes, ( as well as, one
hopes, have the proper medical support ) that will allow the dragon to
doze, we are damned for our
very state of seeming to be near "normal." Therefore, we will often be
family and our doctors to act on that appearance, even though doing so,
would be to our own self detriment.
So, do not allow
your friends, family
or your doctor, let your appearance fool them into thinking that
everything is fine. You must explain to them, as often as is needed,
that yes, you have found a state where your FM is more tolerable. But
the only way to keep it that way, is to let the Dragon doze and for
them not to try and make you do the things that will wake it up, as it
is you who will pay the price in pain.
To many, the
prior statements are
considered self defeating. They will tell you that if you
accept limits, that you have a self defeating mind set and will "never
get better" or worse " you don't want to get better" or... you get the
drift. The medical society is particularly bad at this, with their
attempts to "normalize" us. To the medical world, anything not normal
is deviant and needs "correction." ( See Medical models, a mis match,
on site link )
This is despite
the fact that they have
to offer us anything that comes even close to curing FM. They cannot
even agree on the causes of it. Yet we, as the
person who has to suffer for overdoing it are expected to
"push" ourselves at their command, take whatever drugs they hand us and
just " do what we are told." It is yet another catch 22, medical style.
often no good choice.
We are expected
by almost everyone, from our
family, to our doctor, to push, push push ourselves, whenever possible.
Our failure to do so, at any opportunity, means to many, that we have
up." Never mind the fact, that we have simply found a balance point
with FM, to create the least amount of pain and discomfort, as
advice is ... ignore well
meaning friends, family and yes, even your doctor, if they attempt to
force you back into the same condition you were in, before you
understood what FM means and learned how, in some degree, to manage the
the dragon sleep.