Vol. IV, Issue #34
Bergen CFS-FM Support Group
scheduled to have a presentation on the process of applying for
disability. Unfortunately, our guest speaker was not able to
attend. The Disability Office was very apologetic and has
send someone in either January or February. The date has not yet
confirmed. That date will be posted in the December newsletter.
absence of the professional, we seemed to have some very knowledgeable
in attendance. We also had people starting or currently in the
applying, who had numerous questions and concerns. Those who have
navigated the system advised applicants to document, copy, and keep
records. One suggestion was to make copies of forms your
be completing. On that copy, answer the questions as you are
doctor will. Give your completed sample to the doctor and ask
use it as a guide when filling out his forms. Don't forget to
make a copy
for yourself. Ask for copies of you medical tests. It was
suggested that it sometimes is good to spend the money to see one or
the respected CFS experts. Their diagnosis can be to your
our meeting was a doctor from India
who had CFS for 25 years and now feels he is cured. He became ill
medical student and has not been able to work as a physician. Dr.
H. Kulkarni, MBBS, CPMR currently works in a blood bank in Talegaon, Dabhade,
India. He is
in the US
visiting his daughter who lives in the central area of NJ. While
searching the Internet for CFS information, they discovered that NJ has
of information posted. They have visited other support groups and
attended the NJCFSA Fall Conference. The doctor will be writing a
his experience with CFS and those things that he felt lead to his
He and his daughter plan to create a website where they will post his
findings. Dr. Kulkarni and his daughter, Drinda, have been
visit our meetings if their schedules allow. If they do come, I
they will be happy to speak with you at the end of the regular
am looking for
one person to do a write-up of one presentation from the Fall
The coverage will appear in the NJCFSA Newsletter in the early
The writer will be provided with a DVD of the conference segment.
writing is almost a transcript of the presentation in order to keep the
factual. If you are interested, please contact Pat at email@example.com.
parent organization) along with national organizations (such as CFIDS
Association of America) work to increase awareness of this devastating
misunderstood illness. On November
3, 2006 at the National Press Club in Washington,
DC, a press conference was held to
national campaign to increase CFS awareness. This campaign is a
of the CFIDS Association of America (www.cfids.org) and the CDC.
Julie Gerberding, Director of the Centers for Disease Control and
(CDC), stated that CFS is an urgent reality. Dr. William Reeves
the CFS research program at CDC) remarked that the level of disability
is on a par with MS, AIDS, End-stage Renal Disease, and Chronic
Pulmonary Disease and that recovery from this relapsing/remitting
rare. Dr. Anthony Komaroff (CFS physician/researcher - Harvard
confirmed that there are definite biologic abnormalities. He also
that the notion that CFS is not a real illness should be dropped.
Nancy Klimas (CFS physician/researcher - University
of Miami) commented that
20% of those with CFS have actually been physician diagnosed. The
three present and past members/family members featured in a traveling
exhibit "The Faces of Chronic Fatigue Syndrome" [a facet of the
awareness campaign]. The NJCFSA is one of the largest and most
organizations in the United States.
entire 6 minute clip, go to: www.cfids.org/sparkcfs/press-conference.asp.
Detailed information about the Awareness Campaign can be found at
This article is
The holidays are
be about love, joy and peace. Instead, too often they end up producing
stress and conflict. This can be especially true for people with
fibromyalgia and chronic fatigue syndrome, who may struggle just to
everyday life. Throw a holiday and additional family pressures into the
life can quickly become overwhelming. With a little preparation though,
get through the holidays and even enjoy them! Here are 10 steps, plus a
tips to help you survive this holiday season.
When you think of the holidays, what picture comes to mind? Does it
resemble a scene from a Normal Rockwell print? If so, it’s time for a
reality check. Few holidays ever live up to the idyllic images in those
pictures. It’s time to accept the fact that you can’t do everything you
once did. Are the holidays really about elaborate decorations and
frenetic activity; or are they about expressing your love and
appreciation for family and friends? Now is the time to set new
expectations based on what is most important to you.
to feel guilty.
Guilt develops when you fail to live up to your own expectations, or
you feel like you haven’t lived up to the expectations of others. The
fact is you have a very real physical illness that limits what you can
do. It’s time to stop blaming yourself because you can’t do everything
you used to do or because you can’t do everything you think your family
expects you to do. Make the decision right now that you refuse to
accept any guilt feelings. Remember that the holidays are not about how
much you do, but are about expressing your love for your family.
Communicating clearly with your family ahead of time is key to a happy
holiday season. Sit down with your family and explain that you want
everyone to enjoy the holidays, but you have some physical limitations.
Decide together what aspects of the holidays are most important to all
of you and enlist their help with the things that you can’t do. Some
family members may not understand at first, but don’t allow yourself to
be pushed into doing more than you can handle. Try to remain calm but
your holiday activities.
Every family has its own holiday traditions. List all of your family’s
possible holiday activities then ask each person which activity they
consider the most important (i.e., decorations, big home-cooked meal,
baking cookies, visiting with relatives, etc.). Number them in order of
importance. Focus your energy on the things that are most important.
For each item on your list, decide: if there is an easier alternative,
if someone else can take the responsibility, or if it’s not really
A big part of holiday stress comes from the last-minute rush to get
everything done. Start planning as early as possible. Make a list of
everything you need to do and figure out the easiest and best way to
accomplish each task. Work on a portion of your list each week. Know
that things will go wrong and you’ll probably have some days you don’t
feel well enough to do anything. Be sure to allow extra time so those
bad days don’t throw you completely off schedule. By not waiting until
the last minute to do everything, hopefully you’ll have enough energy
left to enjoy your holidays.
You don’t have to do everything yourself. Don’t be a martyr. Ask each
family member to take responsibility for part of the preparations. If
you can afford it, hire someone to help you clean the house. Pay a
student to address cards or help you bake. If everyone is coming to
your house for dinner, ask each person to bring a side dish or dessert
– then you can just prepare the main dish. Don’t be afraid to ask for
For every item on your “to do” list, ask yourself these questions: Does
this really need to be done? Is there an easier way to do it? Can I get
by with doing less? (e.g., instead of baking 12 kinds of cookies, make
your family’s three favorites; put up fewer decorations or decorate
fewer parts of the house.)
Try to think outside the box. For every holiday task, try to think of
an alternative that would be easier and less stressful for you. Instead
of fighting crowds at the mall, do your shopping online or from
catalogs. Rather than cooking a big meal, consider having your holiday
dinner at a restaurant. If everyone usually comes to your house, ask
another family member to host the festivities this year. Be creative
and make things easier on yourself.
time to take care of yourself.
This may be the most important step of all. It’s so easy to get caught
up in everything that needs to be done and making sure everyone else is
taken care of that you forget to take care of yourself. Make sure
you’re taking time to eat healthy foods and keep up with your exercise
program. And be sure to schedule time to do whatever is most relaxing
and refreshing for you, whether that is soaking in a warm bubble bath,
getting a massage or curling up in bed with a good book. Take time to
Remember that the holidays are to be enjoyed. You’ve done the best you
can do, so it’s time to let go of the “shoulda, woulda, coulda” and
just have fun. Happy Holidays!
you’re traveling out-of-town to spend the holidays with relatives,
think about staying at a hotel for at least part of the time. Having
your own separate space where you can escape to and rest when you need
to will reduce your stress and give you a sense of control.
the hubbub and pressure of holidays with lots of relatives is more than
you can handle, consider taking your immediate family away for the
holidays. A holiday vacation to a ski resort, a dude ranch or Disney
World can be a wonderful and fun family time. As an added bonus, you
don’t have to cook, decorate or entertain guests. And you can probably
get by with less shopping, too, because all your gifts will have to be
of baking 10 different kinds of cookies, have a cookie exchange party.
Invite nine friends and ask each to bring five-dozen cookies made with
their favorite recipe. Each guest then takes home a half-dozen of each
cookie. It’s easier (and cheaper) to make a larger quantity of one kind
of cookie than smaller quantities of several kinds. You can adjust the
number of guests and quantity of cookies to whatever you would like.
will be on Sunday, December 17th. This is traditionally a holiday
to celebrate the season and whichever holidays you embrace.
encouraged to bring something for the sharing table and to bring a
friend, family member. No matter what…come! It is a time
and informal CFS conversation. We look forward to seeing all of
there. We have asked Anne Gilmartin to join us for the
This newsletter is intended for CFS
in the area of this support group. The purpose is to share
and support. If you have questions about meetings please contact:
LaRosa at firstname.lastname@example.org,
Nancy Visocki at email@example.com, Judy Machacek at firstname.lastname@example.org
or Frank Kawa at 201-768-4111
Gilmartin asked me to share this with all of
you. It applies to CFS as well as FM. It is from the
Fibromyalgia Association - email@example.com.