Bergen CFS-FM Support Group Newsletter

 

Meeting Report

“Once again we were joined by several new members who came to learn and share about their challenges with CFS and Fibromyalgia.  Everyone had a chance to talk about their improvement or problems with this chronic illness and we all learned a bit more about how to cope.  As discussed in our session, there are varying levels of all symptoms and it is nice to find others who understand and can offer suggestions. 

 

Attendees were reminded that there are several research studies going on in our area.  The Overnight Sleep Study offered by UMDNJ in Newark, the Fibromyalgia and sleep medication study in New Brunswick, and an independent research study in Nutley for pain medication for Fibromyalgia.  Please see previous issues of the Newsletter for details, or email Judy Machacek for more information.”  Submitted by Co-leader Judy Machacek Judy’s email address can be found at the end of this newsletter.

 

Editor’s Note:  The Pain and Fatigue Study Center is conducting several studies.  They have asked us to let you know that they are still recruiting participants for the Vagus Nerve Stimulation in Fibromyalgia Research Trial.  The study is funded by the National Institutes of Health.  The purpose is to learn whether the Vagus Nerve Stimulation (VNS) Therapy System is safe to use for people who have severe Fibromyalgia (FM) pain.  Thirty participants will be surgically implanted with the VNS Therapy System and will be closely monitored for 2 years.  The procedure involves two small incisions. If you are interested in more information, I have a few flyers and can send you one if you send your contact info to pat.njcfsa@larosas.net.  You may also contact the Pain and Fatigue Study Center directly.

 

Pain & Fatigue Study Center

30 Bergen Street

ADMC 1618

PO Box 1709

Newark, NJ 07103

Phone 973-972-4800  Fax 973-972-7656

www.umdnj.edu/painandfatigue

 

Meeting Site

Pascack Valley Hospital is now closed.  We are working to ensure that the Bergen CFS-FM meetings continue as scheduled.  Hopefully it will all be in place for our January meeting. 

 

The December meeting is, by tradition, a holiday celebration.  Frank Kawa has generously offered to host the event at his home. Understandably, Frank does not want his address or directions published in this newsletter.  If you are planning to attend, please call Frank at the number at the end of this newsletter.  Frank can also be reached via the NJCFSA Help Line (888-835-3677.)  He will respond to messages left there.  Be patient, he will get back to you.  NOTE:  Frank has a cat.  This may be a consideration if you have allergies.

 

The celebration features a sharing table representing the traditions and favorites of many of our members.  If you are up to it, we would love to have you bring something – hot, cold, entrée or dessert – a true pot luck meal!  If you cannot contribute, please bring yourself and share in the camaraderie.  As always, you are welcome to bring your spouse or friend.

 

Interested in doing some writing for the NJCFSA Newsletter?

Our parent organization is the NJCFSA. A newsletter is published three times a year to report on the activities of the organization, including the conferences.  This newsletter that you are now reading is our local version.  It is short and is distributed primary by email.  The NJCFSA newsletter is a printed journal.  Conference coverage is in detail and hopefully it brings the conference to those of you who cannot attend in person.  It also includes information about the state of CFS in NJ.  The content often addresses both CFS and FM issues.

 

Everyone involved is a volunteer and almost everyone one is also a patient.  Consequently, it sometimes gets delayed.  In order to get the issues to you in a timely manner, we need more writers.  An ability to write is an asset, but you can also help by transcribing conference videos into a word document.  All articles are printed with a “by-line.”  It is nice to see your name in print.  Some people are involved in disability issues and opt to keep their identity secret.  The “by-line” for those articles read “Anonymous.” If you think you might be interested in helping, please contact me.  I am currently working on two editions – the very-delayed fall issue which contains coverage of the spring 2007 conference and the following issue which covers the recent fall conference.  I can be reached at pat.njcfsa@larosas.net.  [Some of you may note that this is a new address for me.  It is so my CFS-FM mail is all located in one place.]  Thanks.

 

**** For Fun***

Social Director, Frank Kawa, has set a date

Wednesday December 5^th

 Luncheon

at

The Seville Diner

289 Broadway

 Westwood

The group will be there from 1:30 PM until about 3 PM.

Just show up.

If you have any questions or wish to let Frank know you are coming, you can call him at 201-768-4111.  You do not need to contact Frank to attend.

Surviving the Holidays

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

How To Survive the Holidays

Your Guide to Fibromyalgia & Chronic Fatigue Syndrome.
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.

 

…and on a lighter note

This humorous rendering came from the following site.  If you go to the site you will have the music to sing along. http://www.geocities.com/HotSprings/1496/cfs38.htm

On the Twelfth Day of Christmas, CFS gave to me:

12 Disability Hearings
11 Doctors Doubting
10 Friends A'Fleeing
9 Mood A'Swinging
8 Brains A'Fogging
7 Throats a"Throbbing
6 Muscles Aching
5 Miracle Cures
4 Daily naps
3 Allergies Flaring
2 Joint Pains
AND a Really Lousy Memory.

Next Meeting

The next meeting will be Sunday December 16^th from 2-4 PM at the home of Frank Kawa.  Traditionally, December is a holiday party with refreshments provided by our members.  It is usually a very impressive sharing table.  As always your family or friends are welcome.  It is informal and there will be no speaker. 

 

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.njcfsa@larosas.net, Nancy Visocki at ngv.njcfsa@verizon.net, Judy Machacek at judymachacek@msn.com or Frank Kawa at 201-768-4111.