PWC's
Can Be Touchy!
The following
is a letter sent to the MEssenger by Carole Vaillancourt, published in
the May 1997 issue.
All CFS people know their symptoms, but many of us don't know why they
are there. There are some great studies and research being done explaining
the reason for the various symptoms. Here is one reason that we have bad
reactions to loud noises.
PWC's Can Be Touchy
Hi There!
When I read your April 1997 editoral, I felt I wanted to respond. I have
had ME for 13 years. When I first became ill in 1985 no one knew what was
the matter; even the label CFS didn't come into being for three more years.
I know all about the elements that fuel a kind of helpless rage in anyone
who experiences this illness. As in the case with so many of us, I lost
my job; my training and years of experience working as a Physical and Occupational
Therapist all went down the drain. My insurance payments were cut off;
my marriage was almost destroyed, friends and neighbors backed off and
doctors were kind but mystified. Add to all these losses the unrelenting
pain and fatigue I have experienced, and you have a recipe for explosive
irritability.
Yes, I admit it! I am very thin-skinned, as my husband and daughter could
testify. But this kind of irritability is more than the outward expression
of my frustration with my circumstances. It is also a symptom of a burned
out nervous system that has me continually on eduge. Noise, sudden movements
and unusual manoeuvers of my husband at the wheel of our car cause me incredible
discomfort. I have a startle reflex that has become so violent that even
a slight fright makes me feel like I've been kicked in the chest. Most
often than I'd like to remember I have screamed with reflexive terror at
some minor incident when in the car with my family, and then cringed in
humiliation as my brain kicked in and I've become aware ofthe fact that
there was nothing to be frightened of. Sometimes I feel that my central
nervous system has a life of its own. When I "lose it" and start
screaming at my husband or child it's often only after my nerves quieten
down that I can feel any measure of control over the way I'm relating to
the people around me.
Almost every person with CFS that I have met seems to have the thin, hyper-sensitive
skin that you mentioned in your editorial. It doesn't always manifest itself
in the same way from one person to the other. However, our inability to
adapt to even minor stress makes us very touchy people indeed. We don't
only have difficulty relating to the healthy people around us; our irritability
is also easily triggered by the thin skin of other people with CFS!
So the potential for friction among those of us who have this illness is
very high and makes working together that much more difficult.
I am convinced that an essential part of accepting the reality of CFS and
making the best of it involves awareness of our fragile nerves and their
impact on those around us. If we cannot always control our outbursts (and
I for one do not always succeed), then we can learn to apologize for them
simply. We don't have to grovel. How many times have I had to say
to my husband or daughter:"I'm sorry. Forgive me! I lost it there
for a while. You have done nothing to deserve being spoken to in that way!"
I'm still on speaking terms with both of them!! They love me, but they'd
be the first to admit that it's not easy to live with me.
For most of us with CFS, irritability and a very low threshold for stress
are symptoms that can have a devastating impact on our relationships. At
a time in our lives where we desperately need the support and understanding
of our significant others (family members, health professionals, etc.)
we need to be careful not to alienate them. We can learn to channel
our anger so that its energy can be used constructively. We can learn
to admit that we have a problem with irritability and say we're sorry when
we mess up. As a psychologist whom I consulted explained to me, emotional
health does not involve feeling guilty about my illness and its consequences
for others; rather it involves accepting responsibility for the way I deal
with it. It is not my fault that I feel so exhausted and ill; however I
try to do all I can to make it easier and more agreeable for the significant
people around me to choose to stay involved in my life, because I need
healthy relationships to survive. And, yes, I am also trying to rebuild
my sense of humor. It has sadly atrophied and may be the most difficult
part of my personality to resurrect, but since I have to live with myself
for the rest of my life, I'm doing what I can to help make it more fun!
Thanks for the good work you're doing. (We called Carole for permission
to print her letter...and can confirm her sense of humor is fully functional.
Ed)
Guess this explains why we're so emotional and why so little stress can
cause devastation in our lives. I do not experience the same amount of
intensity that Carole does regarding certain things, but I do know that
I experience the same level of irritability from noise or stress and this
can cause me to "lose it" (not as badly as Carole - but we are
all so different), and I too have had to apologize to people in my life
who may have been around during a nervous session.
Many have stated so well how we all feel and I guess the best one is the
OPEN LETTER
TO NORMAL by Bek Oberin.
I also have a
letter My Letter to People without CFS to also
try to show others just how CFS affects each of us.
If you are planning
on leaving after this page, please sign my guestbook. Thanks!!
 
  
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