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FMS Community Newsletter #101

Happy Holidays.
Tis that season again, the time of year when it doesn't matter if you celebrate Christmas, Kwanza or Hannukah, you are busy and stressed. Plan dinners, make guest lists, shop for gifts, decorate the house, make travel plans and pack for the trip. The holidays we all love can take a large toll on the health of those living with chronic illness.
We will attempt to address some of those issues here.
We invite you all to email us your hints and tips for easy decorting, shopping or cleaning for the next few weeks and we will compile your tips into a special edition of the newsletter to benefit all of our subscribers.

~Chronic Illness and the Holidays
~How can I stay healthy with a chronic illness during the holidays?
~Surviving the Holidays with Chronic Illness


Chronic Illness and the Holidays
Experts describe strategies to let people with chronic illness enjoy the holidays.
By Leanna Skarnulis
WebMD FeatureReviewed by Louise Chang, MDRosalind Joffe, MEd, once hosted a Thanksgiving dinner for 22 people at her house. She planned it months in advance. She hired someone to clean. She created a menu and delegated various dishes to guests. A friend came over the day before the holiday to set the table. Relatives were assigned jobs to serve dinner and clean up afterwards. Joffe has the planning sense of Martha Stewart. She also has multiple sclerosis (MS) and ulcerative colitis.

While it was challenging to host Thanksgiving, she says she'd have felt worse if she hadn't. "The key was advance planning," she tells WebMD. "What I've learned is if I ask for help in advance, even with my own family, people don't feel put upon. They feel they're a part of the event."

Joffe is among the many people living with chronic illness -- defined as lasting more than three months, being persistent or recurrent, having a significant health impact, and typically being incurable. So, with Christmas and Hanukkah at hand, times when everyone is supposed to participate and feel cheerful, what are some strategies for coping?

Do Holidays Make Chronic Illnesses Worse?
There's always the temptation to abandon healthful living routines around the holidays. Eating too much, not getting enough exercise, staying up late, worrying about family members getting along -- all these things can make you feel worse. But do they negatively affect your health?

Joffe, who coaches people with chronic illness in the Boston area to thrive in the workplace, says it depends on the disease. "With diabetes, heart conditions, or epilepsy, for example, you must take care of yourself or the disease gets worse. With autoimmune diseases, such as MS, fibromyalgia, or lupus, your symptoms will get worse but not the disease itself.

What about the holiday blues? Do the holidays really bring on episodes of depression? Michael Thase, MD, during a WebMD Live Event, said geography could play a role. "As people living in the northern hemisphere, we seem to be somewhat more prone to development of depression in the fall and winter months. The fact that this period of risk coincides with our holidays is kind of like a bad coincidence. For example, I'm not sure that I've encountered any writing about the holiday blues in New Zealand, Australia, or South Africa."

Speak Up
"Holidays act like a lightning rod where all the physical and social concerns around chronic illness get really highlighted," says Patricia Fennell, MSW, LCSW-R. She explains that the demands and expectations around holidays can "out" people whose conditions were hardly noticeable. During the year, they spend so much of their energy working and handling the daily chores of living that they have little time left for socializing. Come the holidays, they're expected to show up and contribute.

Speak Up continued...
"Many chronic illnesses, such as diabetes, depression, arthritis, fibromyalgia, etc., are 'invisible,'" Fennell says. "People go to work or volunteer or shuttle kids to school. Most of the time, they don't look sick. When illness flares up, their pain is invisible. Or they have bone-numbing fatigue, so bad that they can't take a shower and go to the store in the same day. There's a cultural misperception that says you're not sick unless you look sick. They need to make their illness visible by talking about it."

Fennell, who is president and CEO of Albany Health Management, Inc., in Albany, N.Y., coaches patients on how to negotiate needs. "People don't know how to ask for what they need. They'll stay home from a holiday party because they can't stand that long. We need a new social etiquette for people with chronic illness."

Party Strategies: Ask for What You Need in Advance
Fennell describes a typical holiday scenario. "You're invited to Aunt Jane's. Let her know that you'll do your best to attend her party, but that if your illness flares up, you may have to bow out. Ask her how much lead time she needs. She'll say, 'Anything's fine.' Tell her you'll call her 48 hours in advance to let her know. Uncle Bob will still be annoyed if you don't come, but if you predict that you're unpredictable, people will generally handle it better."

She advises stating your needs in behavioral rather than general terms. "Don't just tell Aunt Jane you'll have to leave early. Tell her you've been feeling fatigued and can stay only two or three hours. Also tell her that standing tires you out, and ask her to have a seat for you. Putting it in behavioral terms makes it easier for Aunt Jane to conceptualize and to accommodate."

Many hosts and restaurants have become accustomed to considering various dietary needs for guests who have heart disease or diabetes or another condition that requires a restricted diet. "They should be offering options for people," Fennell tells WebMD. "If you don't know what's being served, carry a large handbag with snacks and water, or offer to bring a dish that can be shared with others."

When you're the host, whatever you do don't wait till the last minute to ask for help, says Joffe. "You may not get the help you need. And if people do help, they might resent it. Become an expert at planning. Asking in advance allows people to help gracefully."

Managing the Handicap Parking Space
Shopping and gift giving present special challenges, not the least of which is managing the mall. If your illness is invisible, the challenge can start when you get out of your car. Some less-than-jolly shopper who parked way out in left field will let you know that you have no business parking in a handicap space. Try to think of a humorous retort, like that of a cancer patient who plucks off her wig and smiles.

Joffe advises not letting presents and errands get out of control. "Many people with chronic illness aren't in the best financial situation but don't have the energy to shop for bargains. Plan in advance. Take a day off work so you can shop yet avoid the weekend crowds. The key is what matters most to you. Is it going into your bank account? Would a simple note do? Don't go into lock-step motion."

Ways to Relieve Holiday Stress
An article in Arthritis Today offers three tips for managing holiday stress:

Daily rest and relaxation. Don't get stuck in a never-ending to-do list. Do a crossword puzzle or take a walk or a nap. The mental and physical break will rejuvenate you.

Prioritize. Decide how much shopping, cooking, or partying you can do and stick to it. Ask for help.

Volunteer. Take toys to the Marine Toys-for-Tots Foundation, take food to homebound seniors through Meals on Wheels, or provide goods and services for Hurricane Katrina victims. It will boost your spirit and remind you what the holidays are about.

Patch Adams, MD, the real doctor whose life was the basis of the Robin Williams' movie, would agree that volunteering is good for you. He heads the Gesundheit! Institute in Arlington, Va. It's the umbrella organization for his work to raise funds for a variety of projects, including the building of a free hospital in rural West Virginia.

He tells WebMD, "My best advice for someone with chronic illness coping with the holidays is to work out with their families not to give presents, but instead to give money to local families who are poor, and consume half of what they normally consume. Make it about the spirit of giving."

The numbers of people with chronic illness are growing, and that's not necessarily a bad thing, says Fennell. "People are living today with heart disease and cancers that were once considered terminal illnesses, not chronic illnesses."

The growing numbers also mean you're not alone. Next time you go to a holiday party, look around. Some of those healthy looking people may have chronic illnesses, too.
View Article Sources
Published Nov. 28, 2005.

SOURCES: WebMD Live Events Transcript: "Beating the Holiday Blues." WebMD Medical News: "Diabetes Doesn't Have to Put a Damper on the Holidays." Patch Adams, MD, Gesundheit! Institute, Arlington, Va. Patricia Fennell, MSW, LCSW-R, president/CEO, Albany Health Management, Inc.; author, The Chronic Illness Workbook: Strategies and Solutions for Taking Back Your Life. Rosalind Joffe, MEd,, Boston.
Reviewed on November 23, 2005
? 2005 WebMD, Inc. All rights reserved.


How can I stay healthy with a chronic illness during the holidays?
Taking care of yourself during the holidays can be challenging, but it's not an impossible task. Here are some tips:

Don't disrupt regular routines, such as taking medication or going to doctor's visits
Do your best to get as much exercise and fresh air as your condition allows. Also, be sure to safeguard your times for rest and sleep
If you routinely get depressed during the holidays or winter months, talk to you doctor or get help from other sources. Seek help before things get bad. The earlier you seek help, the faster you'll feel better, and the better your holiday season can be.

Surviving the Holidays with Chronic Illness
by Stacy Stone Sunday, November 25, 2007

The holiday season can be difficult for everyone. It's no surprise that those of us with chronic illnesses may find the demands of shopping for gifts, spending large amounts of money, attending parties and family gatherings, and entertaining house guests stressful. There is good news, though. With a chronic illness, your holiday season can be great. Just take it easy on yourself, and follow these tips.

Gift Giving & Money Concerns

Instead of using an entire day to marathon shop for gifts, pick up a few things each time you go out.
Gift certificates are fantastic! There isn't one person that doesn't want a gift certificate to their favorite store.

Shop online! You can have the gifts wrapped and delivered straight to the recipient, or wrapped and delivered to your house (or to whoever is hosting Christmas), ready to go under the tree.

Pick a spending limit and stick to it.
Do things that are free but still fun and in the holiday spirit. Check out your local city's Web site or newspaper for fun free activities like tree lightings, parades, etc.

If you have a large family or group of friends, draw names so you do not have to buy a gift for each person.
Instead of gift giving, have your family pick a charitable organization to donate to.

Make gifts yourself, such as cookie mix in cute jars, packets of mulling spices, or hand warmers.

Household Chores & Decorating
Buy an artificial tree, perhaps already lit. This is less work and better for the environment.
If you have an artificial tree, put it away decorated this year. Next year comes sooner than you think!

Host a tree trimming party, and have each guest bring an ornament and an hors d'oeuvre.
If you must decorate outdoors, have someone else do it or put out a pre-lit decoration such as reindeer.

Family Get Togethers, Parties, & Food
If you must make cookies, buy the refrigerated kind and decorate them. The custom touch is appreciated, but not as hard and time consuming as making cookies from scratch.
If it is your turn to host dinner, have your guests bring all of the side dishes. This leaves you with only one entree, and most people just love showing off their specialties!
Order a pre-made dinner from your local gourmet store, restaurant, or deli. They are delicious and easy!!
Cook foods ahead of time and freeze them. Also, frozen appetizers make a great quick snack for family members or friends who stop by.

If you are going to a lot of parties, pick up hostess gifts in bulk. For example, a case of wine (most retailers will give you a discount if you buy more), bulk coffee, chocolate, or high quality nuts that you can put in cute packaging.

For most people with a chronic illness, there is a time of day that they feel best. Try and travel during that time. So if you feel best when you wake up, then your travel time should take place mostly in the morning hours.
If you are driving, take frequent breaks.
Pack light. Send your gifts ahead of time, but make sure to allow extra time for them to arrive, as shipping times are longer during the holidays.
Avoid traveling on peak days as they are the most busy and are more likely to have delays. Book flights on the days before and after Christmas and New Years.
If you don't send your gifts ahead of time, make sure you do not wrap them, so security personnel can have access to them. Pack collapsible gift bags to wrap with upon arrival to your destination.

Health & Medical

Check with your doctors to see if and when they are taking off extra time for the Holidays. Be sure that you have enough medication to get you through.
Be careful with alcohol. It can often have dangerous interactions with medications, and it never really makes you feel that great anyway.

If you are worried about gaining weight over the holidays, donate your leftovers to a homeless shelter, make sure you only eat things that you don't normally have (you can eat potato chips any day, but crab or lobster is different!), and increase your exercise a little over the holiday season.

Carry an easily accessible list of your medications with you at all times and make sure you bring your medications in the original bottles or packaging.
See the Center for Disease Control's website for recommendations for medical preparations for travel. This contains vaccine recommendations and any notices of disease outbreaks across the world.

Don't get caught up in doing things just because you have to. Decide what you want from the holiday season, and then make a plan that works for you. Be sure any plans that you make fit into your idea of what you would like from the holiday season or your holiday plan. Consider previous holiday seasons and if you were happy with the way they went. Would you change anything? Would you invest your energy the same way this year?

And learn to say 'no.' People will understand that you can't do everything!

The bottom line is that the holidays don't have to be overly stressful or depressing. Don't expect perfection, and remember that even in the best of circumstances, the holidays can trigger depression and anxiety. Don't hesitate to seek professional help if you find yourself persistently sad or anxious, unable to sleep, etc.

Having a chronic illness does not mean that you can't enjoy the holidays. Keep it simple, take time for yourself, and follow some of these tips and you can have a great holiday season!