Missed the Twitter Chat? Check out the #BestTips for enjoying the holidays!

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We asked you to "Give Your Best Tips for Enjoying the Holidays" in our #GivingTuesday twitter chat on Dec. 1. Here are some of the #besttips from the NFMCPA and the tweeters who participated! Happy Holidays.

What do you do for fun during the holiday season?

  • Sing Christmas carols or other holiday songs and listen to beautiful music that fills your soul.
  • Watch commercial free reruns of Big Bang Theory with a heating pad and a bowl of popcorn.
  • This month, call people you haven’t talked with for a while, wish them happy holidays and get caught up
  • Have holiday hot cocoa with your family and reminisce on past holidays.
  • The holiday season is a great for spending time with family and friends.
  • One tweeter said recording her granddaughters' pre-school Christmas songs gets her out of the house
  • Another tweeter said their family has had "jammy" Christmas several times!.     

What helps you stay comfortable at holiday gatherings?

  • Scarves-and more scarves-are wonderful to avoid drafts and cold car heaters blowing on your neck.
  • FB follower Jypsi is careful not to overeat, her pain increases for long hours with too much food intake, even turkey
  • One of our Leaders Against Pain takes a pillow with her to avoid sitting on a hard seat
  • Another Leader Against Pain avoids the consumption of alcohol as it is a trigger for her pain
  • FB follower Susan suggests wearing comfy clothes to family get-togethers, and having everyone to join in and wear footie pjs
  • Take a warm shower or bath before leaving your home, and again when you return

What do you do to keep stress and pain at bay during the holiday season?

  • Cooking is always stressful at the holidays, so spread it out and keep things in the fridge.
  • Keep warm, keep calm, and when your body starts to hurt STOP! Get the heating pad out and read a good book.
  • By spreading out decorating and shopping, it can also preserve energy so you may enjoy the holidays without feeling exhausted.
  • After holiday shopping, rub your feet with lotion that has magnesium salts.
  • The NFMCPA suggests doing your holiday decorating and shopping over time instead of all at once. This helps prevent stress.
  • One tweeter said giving extra hugs brightens her spirits when she's overwhelmed by her environment.
  • Don't wrap all of your presents at one time. Pace yourself.
  • Limit the big activities and enjoy the quieter moments of the holidays.
  • Take it easy--make it simple. Focus on family and friends instead of the trimmings. Use a fake tree and make dinner a pot luck.
  • Use pockets of time to get smaller tasks done - fill out holiday cards while waiting for a doctor’s appointment.
  • If hosting the holiday, spread your my cleaning so it's not so stressful.
  • Use the NFMCPA Holiday Tips podcast to help you have a better holiday experience with fibromyalgia and chronic pain. http://bit.ly/nfmcpapodcast      

What do you do to ease the pain of holiday shopping with fibromyalgia and chronic pain?

  • Take snacks to eat while holiday shopping to keep your energy up.
  • Dress warmly and in layers so you don’t get too cold, and can remove clothing if you get too warm.
  • Take along a roller bag (even a small suitcase) so you don’t have to carry presents.
  • Make a gift list and divide it into several short trips to the mall instead of an all-day shopping spree.
  • Pace yourself and have a plan before going to the mall. Take frequent walking breaks, get a coffee, or sit on a bench for 5 min.
  • Avoiding crowds and long lines by shopping either early in the morning or middle of afternoon reduces stress.
  • Many chronic pain sufferers find relief in doing their holiday shopping online.
  • Wears gloves when its cold out to keep your hands pain-free and use an electric blanket in the winter
  • Wearing sunglasses helps when the flicker of blue fluorescent lights at the big box stores is too bright.

If you are unable to attend holiday gatherings, what do you do to celebrate?

  • Watch "The Grinch Who Stole Christmas" to get you in the Christmas spirit
  • Read your favorite holiday story or find a new one that strikes your spirit.
  • Laughter is some good medicine! Fav sitcoms are good, too!
  • Host a cookie exchange and let guests bring the cookies and recipes to share. Furnish coffee, tea, eggnog; use paper plates and cups
  • Home for the holidays? Watch old movies - A Christmas Story, A Wonderful Life, Home Alone or look on Lifetime and Hallmark.
  • Reminisce with friends and family or look through old photo albums.
  • Laugh. Listen to podcasts of your favorite comedians.

If you are traveling this holiday season, what are your best traveling tips for the fibromyalgia and chronic pain community?

  • Sleep in a dark, quiet room for the best rest.
  • For help with sleep, bring your fav pillow, ear plugs and a night mask. You will be more comfortable, and it lessens noise and light.
  • Wear comfortable clothing and shoes, dress in layers so you can stay warm and cool down when necessary.
  • Put your feet up on a chair or headboard for 20 minutes at the end of travel for a quick refresher.
  • Use a suitcase with wheels. It makes getting around a lot easier!

How can you give this holiday season to help support the fibromyalgia and chronic pain community?

  • Sharing good information and scientific reviews on social media helps fibromyalgia become visible.
  • Add comments on Facebook and blog posts that let others know they are not alone.
  • Write short notes to FM book authors and let them know we appreciate their leadership.
  • Save & share this photo on social media to help spread awareness about fibromayalgia and chronic pain!
  • Wondering what you can do? Check out some ideas here http://ow.ly/VlOZ2 Use #GivingTuesday to raise awareness

Twitter Chat Tips for Happier Holidays

Recently the NFMPCA held a Twitter chat for tips to help make your holiday celebrations more comfortable and enjoyable.  Here are some tried-and-true ideas shared by tweeters and the NFMCPA.

What do you do to keep stress and pain at bay during the holiday season?
•    The NFMCPA suggests doing your holiday decorating and shopping over time instead of all at once. This helps prevent stress.
•    By spreading out decorating and shopping, it can also preserve energy so that you may enjoy the holidays without feeling exhausted.
•    To learn more tips on controlling stress and pain during the holidays, visit here: bit.ly http://www.fmcpaware.org/holidays/holly-jolly-pain-free-holidays.html

What do you do to ease the pain of Holiday shopping?
•    Many chronic pain sufferers find relief in doing their holiday shopping online.
•    Pace yourself and have a plan before going to the mall. Take frequent walking breaks, i.e. get a coffee or sit on a bench for 5 min.
•    Make a gift list and divide it into several short trips to the mall instead of an all day shopping spree.
•    If you live in a colder climate, dress warmly and in layers so you don’t get too cold, and can remove clothing if you get too warm.
•    Take along a roller bag (even a small suitcase) so you don’t have to carry presents.
•    Take a warm bath before venturing out and another one when you get home.  Warming up your muscles will help ease spasms.
•    If valet parking is available, take advantage of it.  Walking a long distance to and from your car adds to muscle soreness.

What do you do for fun during the holiday season?
•    The holiday season is a great for spending time with family and friends.
•    Don’t isolate yourself; between Dec  1 & 31, call people you haven’t talked with for awhile, wish them happy holidays & get caught up.
•    Sing Christmas carols or other holiday songs and listen to beautiful music that fills your soul.  
•    Play board games with children, friends & family. Don’t play video games with children, friends & family.
•    Start a new tradition; buy your holiday dinner at your local Safeway & serve it as your own! Do a fun family gift exchange.
•    Have lunch with friends at a special restaurant.
•    Get a massage or go to a spa with friends and enjoy a manicure together.

What helps you stay comfortable at holiday gatherings?
•    One of our Leaders Against Pain, @TamiStack, takes a pillow with her to avoid sitting on a hard seat
•    Another Leader Against Pain, @SabriNumann, avoids the consumption of alcohol as it is a trigger for her pain
•    Stay warm and find a comfortable place to sit.  Don’t stand too long.
•    Take a warm shower or bath before leaving your home. And again when you return.
•    Learn myofascial release or yoga stretches that relieve muscle spasms.  Find a bedroom or use the powder room for stretching.  

If you are unable to attend holiday gatherings, what do you do to celebrate?  
•    Laugh.  Listen to podcasts of your favorite comedians.  Watch videos of I Love Lucy or ?
•    Reminisce with friends and family.  
•    Read your favorite holiday story or find a new one that strikes your spirit.
•    Watch old movies: A Christmas Story, A Wonderful Life, Home Alone; check out the Lifetime and Hallmark TV channels.
•    Host a cookie exchange and let guests bring the cookies & recipes to share.  Furnish coffee, tea, eggnog; use paper plates & cups.

What has changed most for you about the holidays since being diagnosed with fibromyalgia or chronic pain?
•    “The NFMCPA offers resources at www.fmcpaware.org for fibromyalgia and chronic pain sufferers.  “
•    “Change is common among fibromyalgia and chronic pain sufferers. We’d love to hear your story! Submit at http://www.fmcpaware.org/community/inspirational-stories.html
•    Change with chronic illness is unavoidable; but not all changes have to be bad. Adapt to circumstances; be open minded to new ideas.
•    Use mindfulness techniques to stay in the present and don’t concentrate on the past.

If you are traveling this holiday season, what are your best traveling tips for the FM and chronic pain community?
•    The NFMCPA has a list of travel tips to help ease the pain and stress that can come as a result
•    Wear comfortable clothing and shoes, dress in layers so you can stay warm and cool down when necessary.
•    For help with sleep, bring along your favorite pillow, ear plugs and a night mask. You will be more comfortable, helps drown out noise and blocks bright lights.
•    Most hotels stock egg carton mattress pads; ask for one to be delivered to your room.  Along with your own pillow, this can really help you rest better.

Sugarplum Visions and Coping During the Holidays

  

This is the time of the year when we find ourselves surrounded, if not bombarded, by a multitude of media messages suggesting what we should be doing for the holidays and how we should be doing it. These messages are designed to conjure up sugarplum visions of beautiful, festive, picture perfect, storybook holidays with smiling families and all the trimmings that will surely bring us all peace and joy and incredible holiday happiness. Like a Norman Rockwell painting, or a Hollywood movie, or even our own romanticized memories of tradition-soaked holidays past, these images are seductively appealing—but the problem is that they aren’t real. They are fictionalized, idealized versions of the holidays.

Consider for a moment the expectations we have placed on ourselves to make our own holidays fit these perfect, but imaginary and unattainable images in our heads. Way beyond our genuine and heartfelt desires for the Season’s Greetings, Merry Christmases, and Happy Hanukahs, we enter the season believing we are somehow obligated to follow a set of unwritten rules prescribing just what and how much we should be cramming into a few short weeks: "Deck the Halls!" (Inside and outside, upstairs and down until everything glows, sparkles, or twinkles, and smells like pinecones and spice.) Or, "It’s the season to open your hearts and be generous" (meaning shop till you drop, wrap it all up, and defer payment until January when you open the bills and go into stress overload).  It is also the season to "Gather your family" (whether you want to be with them or not,)to be the perfect hostess, to set a beautiful table and serve up at least one feast (dust off those cookbooks, shine up the silver, polish the crystal), and of course, to dress up, put a smile on your face, and attend all the parties, functions and festivities within a 250 mile radius.

Somewhere deep in our own heads is a list longer than Santa’s—of all the things we believe we need to or should do to make the season merry and bright. But the fact is that in order to do so we would each have to be a Martha Stewart clone with a staff of forty and the stamina of the Energizer bunny.

Wow. It is a recipe for exhaustion for nearly anyone, but for those of us with chronic illnesses like FM, it can be a recipe for a holiday disaster that results in unrelenting pain, brain fogs, and that deeply rooted, energy leeching fatigue that leaves us incapable of functioning; feeling isolated and depressed.

Somehow, that result doesn’t sound like much of anyone’s idea of a Happy Holiday!  It sounds miserable. But that’s really the whole issue here, isn’t it? Would you choose to be miserable? Living with Fibromyalgia on a daily basis is challenging enough. How can you cope when the holidays arrive and everything around you gets put on fast forward? How can you deal with the heightened expectations? The idealized sugarplum picture you keep in your head and the wonderful intentions in your heart of what the holidays "should" look like? How can you possibly cope with a holiday frenzy that you know will exacerbate your FM symptoms so critically?

The answer is actually quite simple, and yet not so easy to grasp at first, because it involves you making a major attitude shift and a serious commitment to look at the holidays from a new, and more realistic perspective. Only then will you be able to create a plan of action that will allow you to take care of yourself while still celebrating and taking part in the season’s celebration with those you love.  It is possible for you to have a festive and fulfilling holiday! Are you ready to make a change? Are you willing?

So how do you create this new improved version of the holidays for yourself?  The secret answer to coping during the holidays is to simplify.

If you are willing to take a new look at how you have spent your holidays in the past, and you are willing to revise unrealistic expectations and reevaluate your priorities, you cancreate a plan that will afford you control over your own schedule and activities while still celebrating and enjoying the season with those you love. It is possible for you to create this for yourself.

The first thing you will need to do is to decide that taking care of your health is a genuine priority. Because without taking care of yourself, it is unlikely that it will be possible for you to have a happy holiday, and this will affect those who love and care for you as well. So even if you don’t care about giving yourself a holiday gift….give them one that is really from your heart: your healthy presence. (No pun intended.)

Ask yourself: What have holidays been like since you have had FM? What lessons have you learned for them? What changes have you already made to improve things for yourself? Have you repeated the same mistakes year after year, and resigned yourself to believing that’s "just the way it is?" Or have you taken responsibility for what didn’t work and made positive changes? What might you do differently this year? Are you willing to simplify? How can simplifying your holiday plans benefit you?

Those are important questions, so please take a moment now to consider your answers.  When you have, read on.

Making the holidays easier for yourself really is something you can do! FM has not taken away your ability to make your own choices!  Once you have decided to make some improvements, it is important to begin with some realistic expectations. For example: If you are dreaming of a White Christmas with a loving family out of a Norman Rockwell painting and you live in an arid desert with something along the lines of the Ozzie Osborne clan….. it’s time to do a reality check. Know what you are really dealing with so you know what you need to take into consideration. Get rid of all the unrealistic pictures and ideas in your head of everything you think you should be doing or including in your holiday. Pare it down to the traditions, people and activity level that will be feasible for your own specific situation. Be honest with yourself about everything, including what your financial limitations are. Clarify and communicate your situation fully with whomever you will be spending the holidays, about what having FM means and how it will impact your ability to participate. You need to have an accurate picture of the holiday ingredients you have on hand before you can figure out what recipe to use!

Throw out all the "shoulds." Take a sheet of paper and make four columns on it. In the first column make a list of your holiday expectations. This will be a detailed list of everything you think you "should" be doing or including in your holiday plans. Everything! Now, in the next column, next to each item, write down why doing or including that activity is important. In the third column assign each item a number 1 3, with one being "this is a keeper and has to stay on the list," two being "undecided if it should be included," and three meaning "delete it because it is not necessary." In the fourth column, (dealing now only with the number ones and twos) write down whether each item can be delegated, shared with someone else, diluted (reduced or pared down in some way) or absolutely has to be done only by you. Keep repeating this exercise until you’re satisfied that you have a very manageable list, and then repeat it twice again for good measure.

 

This is the first step to helping yourself cope with the holidays, because the less you have to do, or to worry about, the more rested and relaxed you will be, which in turn means the more energy you will have for those activities and events that mean the most to you.

 

Organization:  It is vital to your health and wellbeing that you organize your holiday time. Being able to see the big picture relieves the stress and anxiety of the unknown, and it puts you in control. This is not a plan you want to keep in your head. Write it down, draw it out, or do whatever it takes to make and keep it visible to you.

 

Plan each day and include frequent and regular rest periods that are actually scheduled. Yes,SCHEDULED. These are appointments, and they must be honored, just as if you had a paid appointment to go to the doctor. The rest periods are sacred. No excuses. Also schedule in one 10-15 minute walk or stretching period each day and no more than one physically strenuous or stressful activity if at all possible. Pace yourself. You know how important this is!

 

As you make your schedule or plan, here is your mantra and here is your daily mission: KEEP IT SIMPLE!

 

Be brutally honest with yourself and your loved ones about this schedule so that you all understand why you have chosen to structure your time this way. Remember, the more others are educated about fibromyalgia, the better they can understand and support you. In fact, if they don’t understand, have them read this article, or arrange for them to meet with your physician or support group.  It is sometimes very difficult for those who are healthy to get a handle on this disease, especially since they can’t see how this "invisible" illness makes you feel.

 

So, communicate and decide what your priorities are. What absolutely has to be done, and how can it be done with the least effort? What might be postponed or eliminated altogether? This is how you get organized and create your own plan.

 

Identify your challenges: If you know from experience there is a particular challenge for you during the holidays, plan a strategy to deal with it (or avoid it altogether). Do yourself a favor and make whatever changes are necessary to prevent being in the same situation this year. You might even decide the best solution is to go away for the holiday and avoid the fuss, muss, stress and strain altogether!

 

Cleaning your house.  When you are home for the holidays, you might think the place to begin is to clean up your house. There are several ways to make this easier on yourself. If you can afford to hire someone to clean your home or even just your bathrooms and kitchen—then do it!  If you cannot afford that, consider share-cleaning with a friend: the two of you can do your home one day and his the next (and it really does go easier with two people.) Do you have family at home? Make a family project out of it with pizza at the end as the prize. Or just pare down the list and do just the basics in easy stages. Delete, Dilute, and Delegate.

 

Food, Feasts and other Festivities:  Again: Simplify. Plan ahead. A great tip is to skip going to the grocery store. Most large supermarket chains have home delivery and you do your ordering online or over the phone, often at no additional charge! Amazingly, it often turns out to save you money as well as your precious energy because you plan ahead, don’t walk down all the aisles and wait in lines, and there is no impulse buying!

You might also want to consider purchasing some prepared meals. There are some very reasonably priced complete holiday dinners available through most markets, or if you want to get fancy and can afford it, through caterers. If you have a large number of people coming to dinner, consider rented dinnerware. Some places do this for be less than a dollar per person, and you don’t even have to clean up! You just put everything back in the stackable cartons for pick up!

 

Here’s another energy and money saving idea: bring back the potluck tradition!

 

Shopping and financial stress: Even if you usually love to go shopping, at this time of year, forget the malls. It’s crowded, there are long lines, you get pushed around, and it is exhausting!  I highly recommend shopping either by catalog or online. You can find anything you want, and at the same time do a price comparison so that you find the best available price. You can even order gift certificates for just about anything or anywhere! In addition, if you don’t enjoy gift wrapping, you can usually pay a small fee to have each item wrapped with an enclosure card, and the items can be delivered to you, or the your recipient.

 

No matter how you choose to shop, you can eliminate or at least control your holiday financial stress by beginning with a clear and realistic budget.  Knowing your spending limits ahead of time and sticking to them keeps that awful little black cloud of anxiety from hanging over your head, and who needs to add that to the brain fog you’re already dealing with?

 

Decorating your home:

There is great beauty in simplicity. There is a lot of truth in the axiom "Less Is More," and in recent years it has become more than a trend in interior design. Consider applying this to your holiday decorations, inside and out. 

 

You can create a beautifully decorated living room with nothing more than ribbons draped across a mantle or table and a few well placed candles. You can set a lovely table simply by using a festive table cloth with the ribbons tied around a candle as the centerpiece. If you have a big family, and a tree is part of your tradition, delegate the tree decoration to them, or ask friends in to help you. Perhaps there are a few treasures that are important for you to have out for the holidays? That’s fine, but the key words here are a few. Keep it simple. Less clutter, less work, less clean-up, less stress and strain.

 

Home exteriors can be elegant with a single wreath and a lovely garland around the entry (you can probably hang these yourself), or with multiple strands of lights (as long as they are hung by someone other than you.)  Remember your goal: Less work. Less stress. So Delete, Dilute, And Delegate.

 

Learn to say no without feeling guilty!  For everything you are saying no to, you are saying yes to something else. For instance, if you say no to a party that you don’t really care about that will send you home exhausted, you are saying yes to having the time and energy to spend a happy, low key evening with your family or a few select friends, or even helping out with a charity that has some special meaning for you. Think about it. Either way you are offering a gift from your heart. If the party is the activity that means the most to you, then by all means go, but be sure to unschedule some other activity! Decide what you want to say yes to and then be firm about saying no to everything else!

 

Learn to delay reacting. You can’t always prevent stressful situations from happening, but there are ways to help you prevent stress from taking over your body. Learn to recognize the first small signs of stress in your body, and immediately realize that you don’t have to react instantly! Take a deep breath. Take two or three.  Look away, clear your head, excuse yourself and go someplace to meditate; do whatever it takes to put a bit of distance between you and your reaction to whatever it is that is stressful for you. Mentally step back and put the situation in perspective and ask yourself if you even need to respond? Will responding do any good? Will it help? Will it make a difference? Or will it make things worse. If it is not necessary for you to respond, let it go and focus on something else. If you do need to take action, consider first what might be best and what the outcome might be, and then make a deliberate choice based not on your emotions, but on your knowledge and the desired outcome. Above all else, take the time you need to step back from the situation before you respond or react in any way.

 

Take care of your body. You know you need to eat properly, pace yourself, and take breaks. You also know you need to move around and not stay in one position for very long. Commit to finding reasons to move about the room. Commit to changing the position you are sitting in. Have a seat cushion that helps make you comfortable handy. Remember to stretch. Move those muscles!  If you are not home for the holidays, remember to take your heating pad, special pillows, or whatever else it is that helps you feel more comfortable. Take care of your body andmake a commitment to not pus yourself beyond your limits!

 

Family matters: Whether it’s visiting relatives, having them visit you, or simply dealing with your kids being out of school for the holidays, family can be a huge source of stress and an enormous energy drain.  Here are a few suggestions to help you plan ahead:

 

School’s out!!!!! If you have children (or grandchildren) home for the holidays, hiring a sitter, even if just for two hours a day, will at least give you a break. Other options may be available, such as other family members, neighbors, or friends with their own children. Stock up ahead of time on videos, books, and activities that require minimal supervision to keep the kids occupied. Consider purchasing tickets for someone (other than yourself) to take them to a movie or other holiday event. If they are old enough, get them involved in the planning, cooking, or decorating. No matter how you manage it, it is very important that you get the support you need, so communicate your needs clearly and ask for help.

You might also discover that even fairly young children can be very sympathetic and really want to help if you just let them know you don’t feel well and you need to take a nap for a while. Even if you simply lie on the couch while they watch a video or play nearby, it’s a bit of a break for you.

 

Family events:  Whether it is close to home or far away, pick and choose the family events you want to attend. If there are some out-of-town family events you would like to be part of, but you know that full-time contact would be stressful and exhausting for you, you might want to consider taking control by staying "offsite." If this is financially feasible, consider that if you stay in a nearby hotel, you decide when you come and go, and can therefore control how and when you withdraw from the frenzy and have the opportunity to rest. 

 

Whether family festivities are around the corner or several states away, be honest with your relatives about your health situation and how quickly and easily your energy disappears. The better they understand, for example, that you can’t take part in everything without risking a profound flare up, the easier it will be for them to support you. By choosing some family events, and avoiding others, you are vastly improving your opportunity to enjoy yourself and to have positive interactions with the rest of the family.

 

Guests staying with you: This is a tough situation when you have fibromyalgia, but sometimes it is unavoidable. Do as much planning and as much simplifying as possible. If it’s staying at a nearby hotel is a possibility for them, you’ll have an easier time than if they are in your home, but no matter what, open communication is the key. Once your guests understand the situation, you might even be able to delegate a portion of the work to them.  You can pre-arrange "down time" and explain to them why you can’t accompany them to all the activities they participate in. Don’t hide your situation. Be honest with yourself, and everyone around you.

 

Spending Time with Toxic People: There is only one person in this "relationship" that you can control, and that is you. Then take control of how you handle the situation.  Start by taking time, long before you come in contact with these people, to invent ways to help yourself to cope with, deflect, protect, or immunize yourself to them.

 

When you have to be in the emotionally stressful situation of dealing with unpleasant relatives or guests, here are some tricks to help you cope.  First of all, do everything in your power to limit your exposure to them!  If you can avoid attending some of the functions where your paths will cross, by all means, beg off some of the activities.  If you’d rather attend everything, then find some avoidance techniques like simply leaving the room for a few moments to detoxify, or making sure you are not seated near or left alone with these people. Next, try using humor (inside yourself) as a deflection mechanism. With a pleasant look on your face, pretend they are completely different people and that they are talking absolute gibberish. Just nod politely now and then. Above all else: DO NOT ENGAGE with them! Keep your end of any conversation light and meaningless.

 

Practice ahead of time with a friend at becoming adept at changing the subject and talking about trivial things.  No matter what the toxic people say, no matter how they act, do not respond in kind, and do not allow yourself to react to them. Avoid, tune out, or try something silly like imagining they are a cartoon character or something equally unimpressive. Use your imagination to turn them into something completely ineffective.

 

Emotional support and getting outside of your self:  This is an important time to seek out and maintain whoever it is that is or could be part of your support system. Friends, family, church and synagogue groups, coaches, local or online support groups are just some of the resources available to you. One of the biggest helps for coping during the holidays is to tap into your support system, so reach out! No one will know you need help if you don’t tell them! Share your problems, and share your pain. Share your hopes, your triumphs, and your joys!

 

Don’t buy into the idea that because you live with pain and restrictions, you have nothing left to give to others. The opposite is true. Out of your suffering has grown an empathy and compassion. Don’t lock it up inside you. Put it to use, and let others do the same for you. Find a way to share your gift with others during this season. Whether that means reaching out to other people with fibromyalgia, to people in your church or synagogue, to an unknown person whose name hangs on a giving tree, or to someone else who is sad or lonely, you can make a very real difference in your life as well as someone else’s.

 

The most precious gift of the season.

Your holidays don’t have to be made of sugarplums and resemble Norman Rockwell paintings to have meaning for you. Even if you didn’t have fibromyalgia, you still wouldn’t be Martha Stewart with a staff of 40, or have Donald Trump’s budget. By choosing to honestly assess what you do have, and by planning ahead and keeping it simple you can take whatever it is about the holidays that is most important to you, and make that your primary focus. You can find ways to minimize your stress and keep your activity level manageable. You can make the choice to understand, respect and honor your body’s limitations instead of pushing beyond the limits until its no longer possible for you to be a part of anyone’s happy holidays; and you can communicate all of this with clarity to the people closest to you. You have the power to take control and make your own choices, to create a holiday that will be balanced, fulfilling and well worth your efforts.

 

This is a gift you can give yourself and everyone you share the holiday season with. 

 

As my holiday gift to you, I would like to share one of my favorite quotes: "Peace. It does not mean to be in a place where there is no noise, trouble, or hard work. It means to be in the midst of those things and still be calm in your heart." Anonymous 

 

From my heart to yours: Seasons Greetings, Merry Christmas, Happy Hanukkah, and Happy Holidays to each and every one of you!

Planning a Successful Holiday

Thoughts of a vacation should conjure up feelings of excitement and anticipation—but when you have fibromyalgia, the idea of spending time in an unknown environment can cause feelings of anxiety and trepidation instead. Your head can fill with questions like: Will the food agree with me? Will the bed be comfortable? How many stairs will there be? Will I be able to manage the flight without too much pain?

If you find out about the area, do a bit of forward planning, and arm yourself with a sense of adventure, holidays can be immensely exciting and enjoyable times.

Here are some tips on how to plan a successful holiday.

Getting to Your Destination
By Car:

  • After planning your route and working out roughly how long it is going to take you, look for suitable stopping places every few hours so you have the opportunity to stretch and move around to relieve stiffness and pain.
  • If the journey will take more than five hours, consider breaking it up and staying overnight somewhere. It is better to arrive at your destination a day later feeling okay, than to have to spend the first few days of your vacation recovering from too much time sitting in a car.
  • Travelling by car also gives you the advantage of taking as much luggage as your car can hold! You have the option of taking your own pillow, perhaps a comfortable mattress cover, food you like to eat, and as many pairs of shoes as you wish.
  • Take audio books to listen to as you travel, keeping your mind occupied and helping the time pass more swiftly.

By Plane:

  • Try to travel light. Use luggage on wheels—it’s easier to handle.
  • Always pack essentials—like your medication and a change of clothing—in your hand luggage in case your suitcase is delayed or lost.
  • Consider booking assistance at the airport. Navigating through an airport can involve walking long distances, and at the end of the flight you may be very tired and stiff; it is worth booking wheelchair assistance to help you get from check-in to the gate, and then from the plane to the luggage collection point. Simply ask when you book your flight.
  • If you are travelling with your own wheelchair, remove the control panel, footplates, and any cushions, packing them in your luggage to keep them safe.
  • To relieve pain and stiffness during the flight, ask for an aisle seat so you're able to get up and move around every half hour. You can even do some simple stretching exercises while in the bathroom!
  • Take whatever you need to make the flight more comfortable—for example, your own cushion, heating pads that heat up on exposure to air, pain relieving gels, etc.
  • Try to drink as much water as possible to prevent getting dehydrated.

A Place to Stay
When choosing a place to stay, you need to ensure that is going to meet all your requirements. Phone your intended lodging to talk through your requirements with the manager or owners, rather than relying on information from the internet or a travel agent.

  • Ask for a room on the ground floor, near the office, to avoid lots of steps and having to walk long distances.
  • Ask about exact distances to places you want to visit, like the beach or local town, to help you decide if you will need to use public transport, rent a car, or take a wheelchair to help you get about.
  • Check that the hotel restaurant can provide food you can eat, or ensure you have the option to self cater.
  • If you are travelling with a wheelchair, ask for a wheelchair accessible room and find out what facilities are accessible in your accommodation complex. Check that the bathroom has a wheel-in shower.
  • If you have a power wheelchair, you may need a voltage adapter to charge it up if you are going abroad, as countries outside the US often supply a higher voltage.
  • If you have allergies, ask if they use feather duvets and pillows. You may need to bring a synthetic alternative.

Exploring the Local Area
Try to find out as much as you can about the local area before you arrive. You can often get maps and guidebooks from your local library, and of course the internet can offer a wealth of information. There is no point spending a lot of money on a holiday to find there is nothing you can do comfortably when you get there!

  • Research the accessibility of local sites you wish to visit, either phoning or emailing to ask any questions you may have.
  • Be selective in what you want to do. Don't try to cram everything in so you become exhausted. It is important to pace yourself still and schedule rest times.
  • Find out about disabled parking, whether you can use your disabled badge in that country, and what the rules are.
  • Bear in mind that holidays can involve more walking than you are used to as you are unfamiliar with the area and want to see the sights. If you want to do lots of exploring, work out the best way to get about, either by bus, taxi, car, or perhaps a rented wheelchair.
  • If you take a wheelchair on your trip, find out what buses, trams, or taxis are wheelchair accessible. The local tourist board should have this information and provide maps illustrating which routes you can use.
  • If you have a wheelchair and plan to rent a car, look for the option of renting a small van installed with ramps. If this is unavailable, you will need to ensure that the trunk is large enough to accommodate your wheelchair and all your luggage.

General Tips

  • Journeys can be long and tiring, so schedule a rest day after your arrival to allow yourself time to recover.
  • If you are travelling across time zones, switch into your new time zone as soon as possible and then take your medication accordingly.
  • Find out the best time of year to visit: often spring and autumn are the best times to avoid the crowds and the possibility of intense heat.
  • If you plan to travel in the winter to a cold climate, ensure you have suitable clothing and remember that if you are sitting in a wheelchair you will get a lot colder than your more mobile companions.
  • Most important of all, relax and enjoy the novelty and adventure of a new place. Take plenty of photos and display them at home to remind you of your achievement and that there is a whole world simply waiting to be explored.

Pacing Your Way Through Christmas

Christmas is one of those times of year that you either look forward to with great excitement—or simply dread.  More often than not we feel a mixture of both emotions: the excitement of giving and receiving gifts, seeing the joy on children's faces and the general atmosphere of bonhomie.  But then there is the long-distance traveling to see friends and family; those relatives who simply don't understand fibromyalgia; and all the endless shopping. 

Sometimes the preparations can seem overwhelming when you are struggling with constant fatigue, and the last thing you need is to increase your pain levels by traipsing around the shops or sitting in a car for hours. Most of us understand the concepts of pacing and goal setting.  They’re drummed into you at pain management courses and appear so simple—until you find yourself at home surrounded by innumerable tasks and a demanding family.

The basic idea is to timetable your activities. Avoid overdoing it on good days; have regular rest periods; and set sensible goals for your week ahead. The other aspect is problem-solving—looking for ways to undertake activities that could greatly increase your pain levels, or alternatives for what appear to be impossible tasks.  Research has shown that people with fibromyalgia are excellent problem-solvers and can come up with ingenious ways to accomplish their goals.

So, how can we make this Christmas an enjoyable and manageable occasion?

Shopping

Shopping for presents can be a nightmare: all the crowds jostling your already painful body and standing in lines for ages, waiting to pay. You can avoid even entering the shopping mall by getting access to the Internet and purchasing gifts online. Many prominent stores offer Internet shopping these days, and some will even send items gift wrapped, saving you more time and energy.  The other option is catalogue shopping, which you can do snuggled up on your sofa; I love spending an evening sitting down with a catalogue (especially a clothes one) and flicking through the colorful pages to find the perfect gift.  These two options also offer the excitement of mysterious packages arriving at your door.

If you are the type of person who simply enjoys getting out and exploring the shops for your gifts, then consider the following options.

Do your shopping during the day when there are fewer crowds

Choose a mall that has plenty of seats available or offers wheelchair or scooter hire to allow you to pace yourself

Limit the time spent shopping so as not to exhaust yourself all in one go

If you wish to purchase heavy items, take a friend with you or have them delivered. 

Personally, I do a combination of all these. I like to support certain charities so I shop from various catalogues; I use the Internet to browse for ideas and to purchase some of my items; then I take my electric wheelchair, Millie, into the city to whiz around looking for other items especially at the Christmas markets, which are atmospheric and for me, part of the Christmas experience. (Editor’s Note: Medicare will pay for a wheelchair if it is prescribed for you by an MD.)

Wrapping and Writing

Wrapping presents and writing cards can also pose problems. Lots of repetitive actions are needed to cut, fold and tape presents, and to write a never-ending pile of cards, which can put strain on the muscles and tendons in the wrists and elbows. Completing these tasks successfully can be an excellent goal-setting opportunity. Work out roughly how many presents you need to wrap and allocate times where you wrap up a small number of presents and then take a break and do something else. Writing cards can be done in the same way: go through your address book and count how many you need to write, then get yourself comfortable in front of the TV with a glass of wine and write five or six at a time.  I often print all my envelopes so I don't need to write addresses. If I wish to include more than simply "Happy Christmas" I dictate a letter into the computer to include in my card. Another money-saving alternative is to send cards via e-mail.

Family and Friends

Having relatives or friends to stay or paying them a visit can be as exhausting as it is enjoyable. I must admit I used to dread the annual meetings with old family friends and more obscure relatives that I did not have the opportunity or desire to see on a regular basis.  There would always come the question, "So, Kathryn, what have you been up to this year?" And I would rack my brain for something acceptable to tell them, perhaps about a holiday I had been on or some interesting books I had read. This would be met with polite interest and then inevitably would be followed by the question, "So, you still aren't working? You look so well, I thought you were better." I would then feel the need to justify myself and try to explain what life was like living with fibromyalgia. They would then go on to tell me how brilliantly their children were doing in their jobs or report a new baby in the family.  The whole thing used to make me feel totally inadequate and I couldn't wait to escape back to the people who understood me and my situation. Nowadays I tend to smile sweetly and change the subject and don't really take on board any of their comments, as I know they mean well but don't really have any understanding of fibromyalgia.

Holiday Activities

The same can be true when confronted with activities: having to explain why I can't help with the cooking; or go on a long Boxing Day walk.  I am fortunate that my parents often field for me in these situations, giving me an alternative job to do that is within my present capabilities and arranging a wheelchair-accessible walk for our guests so that I can always join in.  I am very lucky in that respect and try to ensure that I get enough rest so I can join in with as many of the activities as possible. If you come across any awkward relatives this year, try to be politely assertive in stating what you wish or do not wish to do, and what help you can offer.  If you are asked to help with dinner, perhaps offer to lay the table instead; or if you don't want to go out in the cold for a walk, state that you would be more comfortable by the fire with your new book or that you are happy to stay behind and keep an eye on the dinner.  There is often a way to appear useful while sticking to exactly what you want to do, and remember that you don't have to justify your actions if you don't want to.  Pace yourself carefully and simply join in with the activities that give you the most pleasure.

What I enjoy most about Christmas is spending time with my immediate family, being spoilt with my mother's cooking and giving out all the presents.  This can be a time of great contentment and fun when you can enjoy all the social interaction and good food.  My parents live in a farmhouse in the Welsh countryside, so friends and relatives often visit us so I can deal with them on my own territory and have my own family around me.  If you are in charge of the household yourself, it can be more effort having people coming to you. You may prefer to pay short visits to close relatives so you can leave when you have had enough. Whatever you decide to do this Christmas, I hope you manage to pace your way through it and enjoy as much of it as possible; but if you simply can't face all the fuss and festivities, book a holiday and escape somewhere warm!

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