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Wednesday, November 26, 2014

Handling Holidays with A Chronic Illness

I know this time of year is really rough for all of us. As someone with GP, I cannot eat like normal people do on thanksgiving. I plan to cook for my family and friends, but I was wondering how to deal with the fact that I can't eat like normal people and what to do about it. I did some research and found some articles that might help the chronically ill deal with this issue. Additionally, I found some information for family members who always tell us to eat something or try to force us to eat when we are unable to. I hope this will help everyone a bit.



Image taken from: http://images.wisegeek.com/sad-dark-hair-woman.jpg


WebMD (http://www.webmd.com/balance/features/chronic-illness-holidays) gives us a wonderful source for how to deal with the holidays and loved ones as well. The key seems to be planning ahead and communicating your illness and requirements in advance to family and loved ones:

"Rosalind 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.

"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."





This part is for your loved ones, family and friends and dealing with your loved ones, family, and friends. It's to help them understand what we go through and what they can do for the chronically ill. This source does talk about making food for your chronically ill loved one, but with GP, that can be a challenge. We have a very strict diet but you can modify this article to match up with your loved one's dietary restrictions.




According to Kevin M.D. (http://www.kevinmd.com/blog/2011/11/living-chronic-illness-holiday-season.html):

"In the U.S., we’re getting ready to celebrate Thanksgiving. Soon, people around the world will turn their attention to the holiday season. Chronic health problems can take a toll on relationships any time of the year. Most people have to experience unrelenting pain or illness themselves before they understand how debilitating it is, physically and mentally. Loved-ones (by whom I mean family and close friends) may be in some form of denial about what’s happened to you, or they may be scared and worried about the future. Bottom line, suffering from a chronic condition can be an ongoing crisis—for you and for those you’re close to.

That crisis can come to a head during the holidays when people’s expectations of one another are high and when stress levels for everyone are likely to be off the charts for any number of reasons—health, financial, relationship issues. If you’re like me, during the rest of the year, you carefully limit interactions with others in order to manage your symptoms; on a typical day, your most complex decision may be to choose between showering and shopping! But when the holidays arrive, you’re suddenly thrust into the middle of a lively and chaotic social scene where you’re expected to participate in a range of activities, often for days in a row. A bit of advance warning to loved-ones can go a long way toward minimizing stress levels over unrealistic expectations.

I know that this piece won’t apply to everyone. One of the heartbreaking consequences of living with chronic pain and illness is that some people are unable to be with loved-ones at all during the holidays, either because people are too disabled by their pain or illness to be able to gather with others, or because family and close friends having drifted out of their lives. I know the pain of that isolation; I’ll be writing about it in my next piece.

For those of you who are able to gather with others, the holidays can be a recipe for double disaster—the increase in activity exacerbates your physical symptoms, while coping with sadness, frustration, and maybe even guilt about your physical limitations gives rise to emotional pain. No wonder many people with health problems dread the approaching holidays.

If you’re one of the many people with chronic health problems who don’t look sick, the initiative is with you to make your condition visible. Here are some suggestions for helping loved-ones understand what your life is like and for giving them a heads-up on what to expect from you during the holidays.



Share information with them from the Internet or from books

Often the best way to educate loved-ones about chronic pain and illness is to use a neutral source because it takes the emotional impact out of the communication. A quick web search will yield a host of organizations devoted to every conceivable medical problem. Print out select pages or forward a few links to family and close friends. Alternatively, if you have a book about your condition, photocopy the pages that cover what you’d like them to know about you. In your accompanying note, keep it “light”—you could joke that “there won’t be a test.” But also make it clear that this favor you’re asking is important to you.



Write a letter

Many years ago, two friends of mine were in couples therapy. They weren’t able to speak to each other about their marital problems without one of them shutting down emotionally and the other reacting by shouting recriminations. Their therapist told them to write letters to each other expressing their feelings and their concerns about the marriage. It turned out to be a major first step in healing their relationship.

If you decide to write a letter, be sure it’s not accusatory. In composing it, use the word “I” more than the word “you.” Without complaining, express how difficult it’s been for you to adjust to this unexpected change in your life and how you wish you could be as active as you once were during the holidays.

You could briefly describe what your day-to-day life is like, including how unpredictable your condition is which means that you can’t know for sure how you’ll feel on the day of the actual gathering no matter how much you rest in advance. (This is the hardest concept for most loved-ones to comprehend—that we can spend weeks before a big event in full “rest mode,” but still feel very sick when the day arrives.)

I would end by telling them what to expect from you during the holidays—that you may have to skip some events, that you may have to excuse yourself right after eating to go lie down, that you may have to come late and leave early. In my experience, spelling out my limitations ahead of time is helpful not just to others, but to me, because I find it much easier to exercise the self-discipline it takes to excuse myself from a room full of people if I know that at least some of them are already expecting it.

P.S. It will be tempting to send an email, and if you have a lot of people you want to communicate with, it may be the most feasible way to reach everyone. But one thing’s for sure: people will read a handwritten letter, antiquated document that it’s become!




Find that ONE ally and enlist his or her help

If you have just one close friend or family member who understands what you’re going through, enlist his or her help in explaining your condition and your limitations. Before the holidays start, you could ask your ally to talk to loved-ones on your behalf or to be present when you talk to them. Ask your ally to be supportive if you have to excuse yourself in the middle of a gathering, or even to let you know if you’re wilting (as we call it in my household). It’s so helpful for me to be “prompted” by my ally because, when I start to overdo things, adrenaline kicks in which fools me into thinking I’m doing fine. But using adrenaline to get by just sets me up for a bad crash later on.

Your ally may be a close friend or family member who’s just waiting for you to enlist his or her help. Think long and hard before you decide there’s no such person in your life.




In the end, you may have to recognize that some loved-ones may never accept your limitations

Some family and close friends may refuse to accept that you’re disabled by pain or illness. I know this from personal experience and it hurts. Try to recognize that this inability is about them, not you. Don’t let their doubt make you doubt yourself. Your medical condition may trigger their own fears about illness and mortality, or they may be so caught up in problems in their own lives that they’re not able to see their way clear to empathize with you.

Just as you can’t force people to love you, you can’t force people to accept you. But getting angry at them just exacerbates your own symptoms. That’s why it’s important to protect yourself from allowing their lack of understanding to continually upset you. Think of it as protecting yourself from another chronic condition: chronic anger.

The physical suffering that accompanies chronic pain and illness is hard enough to endure without adding emotional suffering to it. When I feel let down family or close friends, the first thing I do is acknowledge how much it hurts. Then I reflect on the many possible reasons for their behavior. Finally, I work on genuinely wishing them well. These three steps immediately lessen my emotional suffering.

As you experiment with these suggestions, treat yourself kindly. Don’t blame yourself if one of them doesn’t work out. Instead, give yourself credit for having had the courage to try! My heartfelt wish is that your loved-ones come to understand and accept your limitations, but that if they don’t, you’ll be able to accept them as they are without bitterness."





According to EmpoHER (http://www.empowher.com/wellness/content/helping-chronically-ill-over-holidays):

"One of the unique problems that comes with chronic illness is that ... it lasts so long.

Some chronically ill people are fortunate to have a solid support network of family and friends. For others, things are very different.

If there were people interested in helping, while they may have been dedicated and compassionate at first, the long haul proved to be too long. The sprint they could run was too short for the marathon of chronic illness.

Many of us have outlasted our helping companions and carry on down the bleak road alone.

Do you know someone who is alone this holiday season? Maybe you can't commit great blocks of time or resources to their care and comfort.

But if you can spend a little time, and maybe even a little money, and you just need some suggestions, you're headed in the right direction.

You don't have to look for big things to make a difference for many who are chronically ill.

Things that you may take for granted, that seem like no big deal in your own life can be things that have stumped the chronically ill with a wall of impossibility for a long time.

Ever made lunch? Fixing something for your friend will not only brighten their day with your caring actions, it will also take care of a practical problem.

Some people who are chronically ill must spend most of their energy putting a meal together, needing to recuperate for the rest of the day afterward. Others just end up not eating.

Washing laundry, sticking it in the dryer and doing some folding are simple chores. Having a friend come over to go through these paces can bring a sense of order to a home that may be short on that quality.

Clean clothes, especially when they've been hung up and placed in drawers, bespeak affection and closeness for someone who may not feel that very often. Not to mention, you will save them their little energy quota for the day for other things.

When you have to run to the store, perhaps you could call or stop by to see if your friend needs anything as well. One trip, two sets of errands accomplished. Less stress and pressure on your friend, and you go home feeling like you've made a difference.

This time of year, snow can be a going concern in many areas of the country. Chances are your friend can't lift a shovel let alone clean a walk or driveway.

Whether we're talking about a shovel, a snowblower, or a snow plow -- whether you do the job yourself or pay someone else to do it -- removing their snow can also remove the burden of being faced with an insurmountable task.

And if you'd like some hot chocolate afterwards, you could come in and spend time with your friend ... and make hot chocolate for both of you.

The possibilities, really, are endless if you want to help someone who is chronically ill. The holes in their abilities and resources are often vast and widespread.

Do it for the holiday season, or just do it for a friend whose daily existence may be tougher than you can begin to fathom."






Dealing with isolation can be a huge problem for gastroparesis patient and also the chronically ill. Many of us are too sick to go out anywhere or even be around food. In that case, the source below will give you some tips on what to do when you're isolated during the holidays.






According to You Don't Look Sick (http://www.butyoudontlooksick.com/articles/guest-writers/tip-handling-isolation-that-comes-from-chronic-illness/):

"The title is ominous, I know. But for so many of us that suffer from chronic illnesses, it’s an all too true reality. I must preface this by saying that not all people who suffer with a chronic illness experience this. However, the subtleties of it grow as time passes and one is confronted with the reality of it, be it large or small, at some point in their lives.

It may be as small as the awareness of the decrease of invitations by friends due to our physical limitations. For some, that awareness grows to a more glaring, in your face, epiphany that friends that were always there before suddenly wish no part in your life…excuses a plenty. It’s not even relegated to just friends. Family roles play a big part of isolation experiences for the chronically ill. Those closest to us are often the ones to fall into one of two categories. Faithfully standing by no matter what or those that turn a blind-eye and deaf-ear to our honest answer to their question, “How are you?”

It’s important for the chronically ill to have a plan to handle times of feeling isolated. This is true whether you’re feeling isolated now or think it’s a possibility for your future. The realities of life are handled better if we understand the possibilities and have a plan on ways in which to deal with such times. Let’s talk about some ways to handle isolation times in your life.

We’re blessed to live in a time of the information super highway. Social network sites make it much easier to remain in our homes, if needed, yet still be interactive on a day to day basis. Whether it be local friends and family or online acquaintances, it’s there for our using and can keep us connected to the real world. Some suggestions might be the bydls.com on facebook or the butyoudontlooksick.com message boards

Not only do we have a multitude of e-social activities to participate in, we have a vast array of research at our fingertips. We can be pro-active in our medical care simply by spending time doing a bit of our own educating.

Can we say real life support groups? If ever there was a source of interaction for the chronically ill and isolated, it’s support groups. Some of the most wonderful people you’d ever want to meet are in a support group and can truly say, “Been there, done that!” Or, they say nothing at all but have golden ears to listen with.

Blogging is one of my favorites. It’s like your online diary. I like to be able to express myself, and even my feelings of isolation, in words. Many blog sites can be set to private so that no one, other than those you want, can read them. Many of the aforementioned support group sites offer their own blog space just for you. You never know when someone will read your blog and be totally blown away by the knowledge that someone else is going through exactly what you are.

So, you see, isolation doesn’t have to take over. Yes, there are times where quiet reflection is needed but no longer do we have to draw back into a dark place in our minds where loneliness rules. Like the old yellow pages ad said, “Let your fingers do the walking!” Get out there via the internet and keep in touch with friends and family. Find new friends that can relate to what you’re going through and can offer hope, encouragement and support that you may not have otherwise. It’s a good choice to make and certainly a good way to handle isolation for the chronically ill."


I really hope this article will help you deal with the holiday stresses. I know all holidays are centered around food, and it's hard to ignore. But, remember, even though the holidays are tough, YOU ARE TOUGHER!

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