November 2006

          Vol. IV, Issue #34

    Bergen CFS-FM Support Group Newsletter

Meeting Report

 

We were 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 promised to send someone in either January or February.  The date has not yet been confirmed.  That date will be posted in the December newsletter.

 

Despite the absence of the professional, we seemed to have some very knowledgeable veterans in attendance.  We also had people starting or currently in the process of applying, who had numerous questions and concerns.  Those who have navigated the system advised applicants to document, copy, and keep exact records.  One suggestion was to make copies of forms your physicians will be completing.  On that copy, answer the questions as you are hoping your doctor will.  Give your completed sample to the doctor and ask him/her to 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 also suggested that it sometimes is good to spend the money to see one or more of the respected CFS experts.  Their diagnosis can be to your benefit. 

 

In attendance at our meeting was a doctor from India who had CFS for 25 years and now feels he is cured.  He became ill while a medical student and has not been able to work as a physician.  Dr. Manohar 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 a lot of information posted.  They have visited other support groups and attended the NJCFSA Fall Conference.  The doctor will be writing a book on his experience with CFS and those things that he felt lead to his cure.  He and his daughter plan to create a website where they will post his findings.  Dr. Kulkarni and his daughter, Drinda, have been invited to visit our meetings if their schedules allow.  If they do come, I am sure they will be happy to speak with you at the end of the regular meeting. 

 

NJCFSA Fall Conference

 

I am looking for one person to do a write-up of one presentation from the Fall Conference.  The coverage will appear in the NJCFSA Newsletter in the early spring.  The writer will be provided with a DVD of the conference segment.  The writing is almost a transcript of the presentation in order to keep the data factual.  If you are interested, please contact Pat at pat@larosas.net. 

 

CFS Awareness

 

The NJCFSA (our parent organization) along with national organizations (such as CFIDS Association of America) work to increase awareness of this devastating and misunderstood illness.  On November 3, 2006 at the National Press Club in Washington, DC, a press conference was held to begin a national campaign to increase CFS awareness.  This campaign is a project of the CFIDS Association of America (www.cfids.org) and the CDC.  Dr. Julie Gerberding, Director of the Centers for Disease Control and Prevention (CDC), stated that CFS is an urgent reality.  Dr. William Reeves (chief of the CFS research program at CDC) remarked that the level of disability in CFS is on a par with MS, AIDS, End-stage Renal Disease, and Chronic Obstructive Pulmonary Disease and that recovery from this relapsing/remitting illness is rare. Dr. Anthony Komaroff (CFS physician/researcher - Harvard Medical School) confirmed that there are definite biologic abnormalities.  He also said that the notion that CFS is not a real illness should be dropped.  Dr. Nancy Klimas (CFS physician/researcher - University of Miami) commented that less than 20% of those with CFS have actually been physician diagnosed.  The NJCFSA has three present and past members/family members featured in a traveling photo exhibit "The Faces of Chronic Fatigue Syndrome" [a facet of the awareness campaign].  The NJCFSA is one of the largest and most active CFS organizations in the United States. 

 

To view the entire 6 minute clip, go to: www.cfids.org/sparkcfs/press-conference.asp.  Detailed information about the Awareness Campaign can be found at www.cfids.org. 

 

Coping

 

This article is re-printed from www.about.com.     

How to Survive the Holidays

http://chronicfatigue.about.com/od/copingstrategies/ht/holidaysurvival.

The holidays are supposed to be about love, joy and peace. Instead, too often they end up producing guilt, stress and conflict. This can be especially true for people with illnesses like fibromyalgia and chronic fatigue syndrome, who may struggle just to cope with everyday life. Throw a holiday and additional family pressures into the mix and life can quickly become overwhelming. With a little preparation though, you can get through the holidays and even enjoy them! Here are 10 steps, plus a few tips to help you survive this holiday season.

Here's How:

1. Examine your expectations.
   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.
2. Refuse 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.
3. Communicate, communicate, communicate.
   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 be firm.
4. Prioritize 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 necessary.
5. Plan ahead.
   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.
6. Share the workload.
   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 help.
7. Simplify.
   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.)
8. Find alternatives.
   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.
9. Schedule 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 pamper yourself.
10. Enjoy!
    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!

Tips:

1. If 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.
2. If 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 packed.
3. Instead 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.

Next Meeting

The next scheduled meeting will be on Sunday, December 17th.  This is traditionally a holiday party to celebrate the season and whichever holidays you embrace.  Members are encouraged to bring something for the sharing table and to bring a spouse, friend, family member.  No matter what…come!  It is a time for joy and informal CFS conversation.  We look forward to seeing all of you there.  We have asked Anne Gilmartin to join us for the festivities.

This newsletter is intended for CFS patients in the area of this support group.  The purpose is to share information and support.  If you have questions about meetings please contact: Pat LaRosa at pat@larosas.net, Nancy Visocki at ngv.njcfsa@verizon.net, Judy Machacek at judymachek@msn.com or Frank Kawa at 201-768-4111

Anne Gilmartin asked me to share this with all of you.  It applies to CFS as well as FM.  It is from the National Fibromyalgia Association - info@fmaware.org.