"The Most Wonderful Time of the Year"... with Gastroparesis?

It’s the “most wonderful time of the year,” we are told in verse, but for those of us living with digestive disorders, it can be the most challenging time of the year.  Despite presumptions of holiday gatherings, stacks of presents beneath lavishly decorated trees, and carolers dressed in finery, spreading good tidings, Christmas is a season filled with physical, emotional, social, and financial hardships for many in our community.  The dark winter days, overflowing with constant reminders of illness-free Christmases gone by, demands and expectations of excellence from ourselves and others, and social and financial pressures, lead to anxiety, depression, loneliness, and heartache for some.

Though we long to connect with family and friends this time of year, our illnesses often prevent us from doing so in the ways we prefer.  Travel, though sometimes necessary, is cumbersome and fatiguing; shopping taxes our energy and gift exchanges stretch our already nearly-snapped budgets; physical symptoms produce anxiety over whether we will be able to make it to family gatherings and holiday parties; and the delectable confections which appear at work, in our homes, and throughout public venues tempt and torment us.

In addition, we are plagued by memories of healthier days past when we engaged in merrymaking and feasted upon sugary goodies until our little hearts were content.  Many in our community find it challenging to cope with the countless demands placed upon them this time of year – mandates to join events in which they once participated; requests to prepare, attend, or host extravagant parties; long distance travel requirements; and anticipation that they will retain a cheerful mood throughout the whole affair.  On the other hand, some desperate souls, those homebound or who have lost friends and loved ones, struggle to find ways to cope with the resulting isolation and loneliness – with the lack of such demands, if you will.  Perhaps they were once included in festivities but have now been forgotten by those who have moved on with their “normal” lives.  Or maybe they choose to hide from the hustle and bustle of the season because they believe they are unable to participate in meaningful ways.  In any case, such circumstances can easily lead to discontent and distress. It is difficult to watch the jolly world turn around you when you are faced with the burdens of chronic illness.

But all hope is not lost.  With a little planning, a bit of compromise, and a fresh, yet realistic outlook, we can perhaps minimize the ill effects of this arduous time and help each other to find new ways to enjoy this holiday season.  I offer the following suggestions for your consideration:

*First and foremost, let go of your expectations of perfection.  Easier said than done, I realize, but you are likely not physically capable of acting in the “ideal” ways you did prior to diagnosis.  Though necessarily different now, holidays can still be enjoyable, even when details do not quite meet your exacting standards.  Find joy in the little things – moments with family, quiet evenings in front of the fire, watching Christmas classics on video, or playing board games with friends while sipping hot beverages.

*Let go of others’ expectations for perfection as well.  You are not obliged to live up to anyone else’s prescribed notions of how this holiday should unfold.  You can hand-pick the events and gatherings you wish to (and feel able to) attend.  You can limit your time at such affairs or cancel at the last minute.  Likewise, you do not have to succumb to the pressure of participating in every gift or card exchange.  It is perfectly polite and acceptable to say, “I am sorry, but I am too ill to make this event,” or “My apologies.  I am afraid I will not be able to exchange gifts this year.  It has been a rough spell for us financially.”

*If you are alone and do not wish to be, consider turning to social media sites, online events, support groups, or telephone calls for companionship.  If you are physically able, think about volunteering at a local long-term care center or children’s home, joining a public tree-lighting or holiday party, or attending local church services, plays, or musicals.  Though this may not rival family gatherings, it might help you feel a bit less lonely and isolated. 

A few more practical, tangible tips:

*Simplify where you can.  You are not required to decorate that 9-foot pine with tinsel, lights, and perfectly-placed ornaments, dangle garland from every banister, mantle, and doorway, or send cards to all those with whom you have ever come into contact.  Buy a small pre-lit and/or pre-decorated tree, gaze at your neighbors’ holiday lights instead of stringing your own, and present close friends and family with “virtual” greeting cards rather than stuffing envelopes.

*Consider online shopping.  This will save you loads of time and energy.  You can easily search websites for the most affordable prices, and in many cases, you can have gifts pre-wrapped and shipped directly to the recipient.  Alternatively, consider gift cards to loved ones’ favorite places.

*Set a budget and refuse to exceed it.  You might have to sacrifice that “ultimate” gift you had your heart set on, but is the added budget strain really worth it?  If you have children and cannot afford presents, contact charities like the Salvation Army, church groups, or clubs/organizations that operate assistance programs.  Thrift stores such as Good Will offer inexpensive merchandise as well, and even homemade goods, crafts, or foods can become meaningful gifts.

*If traveling, budget plenty of extra time for rest stops; bring “safe” foods/nutrition along for the trip; pack extra clothing in case of accidents; and make certain you have ample supplies and doses of medication.  If you will be separated from your luggage, keep your medications with you in their original prescription bottles or containers.  You do not want to risk your medications being lost with your baggage.  Check accommodations ahead of time when possible.  You will want to make sure your needs will be met once you arrive at your destination.

*Rest, rest, rest.  Find quiet places, allow down time, relax, and limit your engagement when necessary.

This Christmas season may not be a replica of pre-diagnosis Christmases past, but it can still hold delight, and you can create memories you and your loved ones will treasure.  Acknowledge your feelings and grieve for times past if need be, but free yourself from the heavy burden of impractical demands and expectations.  Set realistic goals, ignore unreasonable demands, and find joy in the few special moments spent with loved ones or even in the service and company of strangers. 

Happy Holidays!

Feast Your Eyes on a Gastroparesis Holiday

This holiday season, as you prepare and eagerly await your gatherings and feasts, please remember the Gastroparesis community. Far from being a festive season, this can be one of the most challenging times of year for us. The physical, social, emotional, and financial hardships associated with these life-altering diseases and disorders make many of us wish we could hide from the holidays rather than incite us to join in the celebration. And though we are glad our families and friends can savor the wonderful treats associated with the holidays and join in the various festivities, we long for understanding, and we yearn to be included in some fashion.

We want you to know that there are numerous obstacles surrounding the holidays for those of us with digestive disorders.  To begin with, many of us are unable to participate in the usual holiday events and family get-togethers due to the ever-present physical symptoms of our illnesses and the sheer fatigue that accompanies them. We are, quite simply, too sick and tired to make it to the party.  Because we are worn down from battling pain and nausea, and because most of us do not consume nearly enough calories to meet our nutritional needs, we often do not have the energy required to prepare food, purchase and wrap gifts, dress up, ready ourselves, make the trip, and spend long hours socializing at a holiday event.  We cannot afford to use precious energy needed for our survival on these lovely but unessential “extras.”

Travel is likewise difficult because of our fatigue but also because many of us must carry along cumbersome equipment and supplies required to treat our conditions.  We worry that we will forget a necessary item or bring fewer supplies than needed, and we sometimes fear that our symptoms might worsen to the point where we might need immediate access to our medical providers.  We wonder if local hospitals and medical providers will be able to quickly assess our health needs and assist us in an appropriate manner should supplementary care be required. 

In addition, many of us are disabled, unemployed, and/or have high medical expenses and find ourselves financially strapped at this time of the year.  We would love to purchase goods and presents and make long trips to see loved ones, but we find ourselves struggling to pay for our basic medical expenses and cannot afford to spend extra on things above and beyond the essentials for our survival.  We hear your kind offers that we are not obliged to pitch in for the meal or reciprocate gifts, but for many of us, this creates a sense of guilt and makes us feel as if we have not done our part or contributed in a meaningful manner.

Please be aware that, emotionally and mentally, these pitiless diseases take a heavy toll on us at this time of year. Many of us become depressed because we can no longer participate in the holidays in the same manner we did prior to diagnosis.  We find it difficult to cope with the abandonment of old traditions.  We are, in short, not quite our usual cheerful selves.  These feelings may intensify if we are unable to attend the usual celebrations, and our feelings of isolation, the sense of being “ignored,” can become crippling.  Rather than reveling, we often find ourselves mourning the loss of our old lives.

Though the entire holiday season can be quite stressful for us, Thanksgiving is particularly problematic, as it is a holiday that largely centers around the feast itself, and deserves special mention.  Some in our community cannot eat at all and many are severely limited as to what they can consume.  We are flooded with images of sumptuous food that appear on television, on billboards, in social media feeds, and in various public arenas at Thanksgiving time, and yet we are unable to consume even a few bites of these delicacies.  Can you imagine the anguish of watching everyone around you enjoying beautifully crafted homemade meals, lush with every food you dream about every single day, while you sit to the side, unable to taste these treats?  It is painful – physically and emotionally.  We long to join in the normal events, but the temptation to eat that which we cannot is sometimes agonizing and overpowering.  At times, the mere smells of the foods at such events keep us away.  Since nausea is a major concern, the aromas filling your houses are often intolerable to us.  And – though not a pleasant topic – we are concerned that we will not have unfettered access to your restrooms should they be required. We are further horrified at the thought of creating an awkward and embarrassing situation for both ourselves and our hosts.  Such are the joys of our physical symptoms.

We desperately seek to take part in the holiday happenings, but we do not know how to make our loved ones see that we cannot celebrate in the same fashion that we used to or that most of you still do.  Some of us find ways to cope, perhaps by bringing our own food (or other source of nutrition) to your event, by limiting our time – coming late and/or leaving early, by distracting ourselves with alternate activities while the rest of the party-goers dine, or with the help of another such creative tactic; however, some of us cannot bear the effort and sacrifice this requires and choose not to attend. 

Please try to understand that when we pass up invitations or do not "like" your social media posts regarding foods and holiday parties, we are not being unkind, and we do not wish to avoid you.  We still yearn for companionship and inclusion.  We only want to escape the circumstances that make dealing with our conditions more difficult.  Believe it or not, we do not like to see our family and friends uncomfortable.  We are well-aware that we can be an inconvenience and a source of guilt for those who do not know how to help us and who feel bad for partaking in the dinner and festivities while we watch from afar.  We do not wish to see our loved ones enjoy the merriments any less because of our presence.

What we would like, and what our families and friends can offer is, first and foremost, sensitivity to our plight.  We miss our old lives and long for things to be the way they were prior to diagnosis.  We struggle greatly to accept that our lives will never return to the “way things used to be,” and we sometimes get lost in those sad moments.  We are capable of happiness at this time of year, but we might forget that for a brief instant, and it sometimes takes great effort on our part to remind ourselves that we can still have joy in our new post-diagnosis lives.  We fight to find substitute sources of delight and focus on what truly matters.   

In addition to your sensitivity, you can support us by offering alternatives and minor accommodations.  Perhaps you might be willing to oblige us by allowing us to bring our own foods/nutritional supplements without feeling insulted when we “refuse” to taste the culinary creations that it took you “all day” to produce.  Or perhaps you might permit us to come at an earlier/later time or stay only a few minutes so that we miss the dinner portion of the event and do not exhaust our limited energy resources.  We would likely appreciate the chance to rest in a secluded spot without the noise and commotion normally found at holiday gatherings when necessary as well.  We do not wish to insult you.  We know you have gone to great trouble, and we value your company, but “just a few bites” of an unsafe dish or “just a few more minutes” at the party can leave us in agony for days after the event.  We are sure you would not wish this for us. 

And if you are feeling especially compassionate and accommodating, perhaps you might consider holding a completely separate holiday affair, possibly less boisterous, which does not include food in any form – a second event just for us.  Or maybe you would like to leave the hustle and bustle of the holiday party world for a brief spell and have a quiet visit with us in the comfort of our own homes.  We know this can be an inconvenience, but we miss you and would love to see you when we are feeling up to it.

We do not expect nor want you to give up the traditions and events that you have always enjoyed at this time of year.  We ask only that you understand that we often mourn days past and long to have those times back again.  It is an especially difficult time of year for us.  We hope you will consider finding ways of including us (and our post-diagnosis bodies) in the holidays. After all, it is not really about the food.  It is truly family, friends, and good times spent enjoying each other’s company that make the holidays special.  We welcome and cherish those moments. 

Happy Holidays!

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*Please Note: A shorter, slightly altered version of this blog was published on "The Mighty" at https://themighty.com/2016/10/difficulties-of-the-holiday-season-for-people-with-gastroparesis/. This blog will also be available in the Association of Gastrointestinal Motility Disorders (AGMD) quarterly newsletter.  You can find additional information about the AGMD at http://www.agmd-gimotility.org/.*

Gastroparesis: Surviving Thanksgiving

Thanksgiving can be a particularly difficult time of year for those of us with digestive disorders.  While all holidays certainly include their fair share of tempting treats, Thanksgiving centers around food and feasting like no other.  Rather than a day of “giving thanks,” this day too often becomes one which almost entirely revolves around the meal itself, and because of this, those of us with limited dietary options are seemingly constantly reminded of that which we have lost.  If we allow ourselves, we can easily sink into a state of depression and despair. 

So, how are we to manage?  Well, I cannot promise you that this will be the most delightful time of year.  It is not pleasant to give up the foods that we enjoyed prior to diagnosis. There will no doubt be moments where sadness sets in, where we mourn our old lives, and where we wish we could curl up and hide from the world.  But, though challenging, there are many approaches and tips that might help us better cope with these struggles and make the best of a trying situation:

*To begin with, it is perfectly acceptable and polite to make others aware of your condition.  Do not be shy about your needs.  You can be honest and open about your requirements and wishes while still presenting them in a respectful and non-demanding manner.

*Rest up before and after the big event.  The more energy you have, the better you will be able to cope with the physical requirements and stress the day brings.

*If the holiday event is local, one option is to skip it completely and, instead, ask friends and family to stop by your residence for a few minutes before leaving the area.  This way, you can remain in the comfort of your own home and still enjoy a brief visit with loved ones.

*Another option is, of course, to omit the food entirely from your celebration.  Yes, I know it sounds radical, but it is possible to have a Thanksgiving party without the feast.  Now, since this will likely not be a popular option, perhaps, as an alternative, the party might include food, but be centered around something other than the dinner – playing games, watching a movie, engaging in conversation, etc.  Use this occasion to catch up with family members and friends with whom you have not visited for some time.  The meal may have to be offered, but all can agree that it does not have to be the focus of the day.

*Ask the host if you may arrive late or leave early.  Maybe you can skip the dinner portion of the meal entirely.  But in any case, limiting your time there will help with fatigue.

*Bring your own safe foods/nutrition or “eat” before arriving at the event.  This will likely reduce your cravings and lessen temptations.  You can speak with the host beforehand to clear this, or perhaps the host might even offer to make a few dishes you generally find tolerable.

*Talk about restroom arrangements in advance.  You will wish to have unfettered access should you feel ill, and perhaps you can arrange to have a restroom reserved for you alone should the need arise.  Bring a change of clothes in case of accidents.

*Are there places away from the crowd where you can rest or be alone if you are feeling particularly unwell or tired?  Might you leave the room or go for a walk if sitting at the table during the meal is not something you wish to do?

*Encourage a “gratitude” discussion.  What are you all thankful for?  Such a conversation will give you a chance to reflect on the blessings you still have while perhaps stirring the rest of the family to consider all their good fortunes as well.  This may lead to greater awareness and empathy and might give you and your loved ones much-needed perspective about the day.

*If all goes awry, and you find that you have consumed far more than you perhaps set out to, forgive yourself and shift your attention to getting through the aftermath.  Sometimes we do what we know is not best physically because it lifts us emotionally for a time, or simply because it is difficult to constantly resist temptation.  These are difficult choices, and we are not perfect human beings. 

Thanksgiving can be a harsh reminder of our former lives.  We have much to be thankful for, but we cannot help but notice, at times, that we have also lost much.  Despite all efforts and best intentions, you may find yourself dealing with feelings of guilt, sorrow, and loss.  Acknowledge the feelings, as some of this is likely unavoidable – but also be kind to yourself.  Surviving the holidays intact is a lofty goal for those of us with digestive disorders, one that we can meet, to varying degrees, with a little care and understanding from ourselves and others.

Happy Thanksgiving!

BITTER COLD

BITTER COLD

Warm ourselves with our memories,

But the chill encircles; it is deep,

Wrap our arms around our fragile bodies,

Meet the frozen ground, sit and weep.

Inside, it is comfortable and cozy,

Through frosted window panes we dare to glance,

Catch a glimpse of long-forgotten celebrations,

We would join you, given half a chance.

Candle-lit dinners and sweet confections,

On your festive tables do abound,

Aromas drift slowly outward to meet us,

Drink it in, but no welcome to be found.

Cast out and abandoned by the others,

Lepers, beggars, we fight the bitter cold,

Misfits, lessers, abandoned to our fate,

Downhearted, unfortunate wayward souls.

Inside by the fire – What’s that rapping?

Did you hear it? An annoyance, perhaps the wind,

Ignore it, tend the embers, fan the flames,

It is nothing, a mere phantom, we’ll pretend.

Invite gloom to our bright, festive galas?

Dampens the spirit, ruins the holiday mood!

Gaunt faces and frail bodies depress us,

Busy setting the tables and preparing our food!

Glance sideways out snow-covered windows,

Vision blurred by the blizzard’s vast path,

Trees to trim, bows to tie, wreaths to hang,

Carols to sing and bountiful gifts to wrap.

No time for the sickness and sadness,

Welcome suffering when our lives are intact?

We care in theory and at a great distance,

But your illness, it does distract!

Treats and presents drive the holidays onward,

As our feasts and trees we gather round.

Ornate settings, fancy garments, merry-making,

Isn’t that what it’s all about?

By the fire, we are snug and sheltered,

Crack the door, and usher in the bitter cold?

No, our lives hold such joy and such fineness,

Risk imperfection, infirmity taking hold?

No pity for those in the frozen wasteland,

No warm blanket of compassion to share,

These souls who struggle in the ice storm,

Are they our concern?  Why should we care?

The gentle rapping from the outside, scarcely noticed,

The faint calling you so blithely ignore,

Is the wail of the lost, the forgotten ones,

The tender knocking on your cold heart’s hard door.

Have you forgotten you cherished and loved us –

That we were once welcomed into the fold?

Have the brisk biting winds masked our cries?

Have you been numbed by winter’s bitter cold?

How can we warm what’s inside you,

Spark the flames in your icy, callous souls?

How can we reach deep inside you,

Ignite kindness, heat your frozen-solid core?

We who peer in from the outside,

Shivering beneath icy-cold stares,

We who are molten on the inside,

Harbor souls like white-hot blazing flares.

The others could learn much from the exiles,

Gentleness, generosity, great care,

Tenderness, mercy, understanding,

Love and kindness beyond compare.

It is not about the bows and the ribbons,

The parties, the balls, the elaborate feasts,

It is about the genuine love between us,

So much more this time of year should mean.

Bring us in from our icy cruel wasteland,

Harbor us instead in your warm embrace,

Welcome us in from the bitter cold,

Let your fellowship us once again taste.

For the beauty of this holiday season,

Is found not in the material “things,”

But in the joy of simply being together,

Sharing with loved ones who peer through the panes.