A Pain Poem: Only the Family Left to Tell

By Ingrid Hollis

How many pass, sight unseen
Only the family left to tell?
Yes, we know all too well
It was the pain.

Untreated, unheeded, so it goes
How engulfed in a fiery foe, left untended
It grew from head to toe.

Only the family left to tell,
How this kind of pain, left untreated,
They quickly go.

We cannot afford to go backwards in time,
Too many lost to pain unheeded
To "it’s all in your head” and “no one dies."
For die they do, a horrible fate.

When pain can be treated,
Make no mistake,
Pain knows no limits when untreated it goes.
Intractable suffering, it's horrible blows, becomes 24/7, and it never goes

How long can a heart beat, and a soul keep alive
When a body is stressed beyond limit?
And remember…
No one wants to die

Pain can be treated, make no mistake
Please discard this meme, this heartless theme
"Pain never killed anyone."
We've done it before.

We can't go backwards
We're better than that, we can do more.
Who decides our fate, it hangs in the balance
If intractable pain comes knocking on your door?

Will you be told to go away,
”Pain never killed anyone.”
Now please go away?

Ingrid Hollis is a person in pain and patient advocate. Ingrid recently retired from a leadership role in the Tennant Foundation’s Intractable Pain Syndrome Study and Education Project to care for her family.

5 Tips to Keep Your Pain and Stress Levels Down Over the Holidays

By Victoria Reed, PNN Columnist

Christmas is my favorite holiday, as it is for many people. Once Thanksgiving is over, I start getting excited for this once a year “season” when I get to wear my favorite sweaters, sing Christmas songs and shop till I drop! My home is transformed with decorations, lights and a Christmas tree filled with ornaments, old and new.

My mood is jovial, though the pain is still there, albeit faded into the background amid the distractions of holiday preparations.

My family has always celebrated Christmas. As a child, I remember lying in bed and being excited for Santa Claus to come. Of course, as I grew older, the anticipation and excitement waned a bit, as I eventually realized there was no Santa. However, I was always grateful for what I received and loved Christmas morning with my family. I treasure those memories from my childhood.

Though it’s a happy time for many people, the holiday season can bring stress, sadness or even loneliness to people suffering from chronic pain. It can be difficult for us to do some of the things we were once able to do effortlessly. Going to crowded stores and standing in long lines can be difficult if you suffer from back or joint pain. Fatigue can increase as well.

For some, the distraction of the holiday season might make your pain seem better, because you’re simply not thinking about it as much as you spend time with friends and family, attend holiday parties, eat delicious food, and take in the sights of Christmas. All can seem well, at least temporarily.

But for many pain sufferers, pain can actually increase over the holidays, due to increased demands on the body and the stress of shopping, entertaining and preparing holiday meals. 

I spend a good deal of time choosing gifts for my family. I also like to make gifts that have a more personal touch. But that sometimes triggers rheumatoid arthritis flares in my hands and wrists, and causes my neck and shoulders to get sore from sitting in one position for too long.

My fibromyalgia also seems to get worse as soon as the weather turns cold. I live in northeast Ohio and it is definitely not easy this time of year, but I can somehow tolerate winter weather. In fact, having snow on the ground actually contributes to that magical feeling of Christmas.

Regardless of what climate you live in, here are 5 tips to prevent your pain from worsening during the busy holiday season:

1. Shop online. This will allow you to avoid stressful traffic and crowded stores. You are also less likely to catch a cold, flu or covid when you shop from the comfort of your own home.

2. Limit gatherings to smaller groups to reduce stress and pain.

3. Eat healthier. The old saying is true: You are what you eat! You may be tempted to feast on cookies, pies and fatty holiday dishes, but you will pay a price for it. Stomach aches, sluggishness and weight gain are some of the side effects of Christmas.

4. Start shopping early and wrap your presents early. If you wrap a few gifts per day vs. all of them at once, you’ll be less tired and less sore from being hunched over. 

5. Keep exercising (if you are able), even if it’s just stretching or walking. If your muscles are tight, that tension will increase pain. Staying fit will help you navigate those long lines and crowds if you choose to shop in stores.

While the holiday season can be stressful for those of us suffering from chronic pain, taking precautions and making smart choices will ensure a fun and memorable holiday season, without the added discomfort.

Victoria Reed lives in northeast Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis. 

A Gift to Be Revered

By Carol Levy, PNN Columnist

I was thinking, “It's Christmas time. I'm supposed to be happy.”

Instead, I am by myself in the parking lot, observing others walking with friends, enjoying each other, and the frivolity of the season. And I am jealous.

I hear the laughter as they walk past me, reveling in the joy of the holiday.  And I am jealous.

I feel the biting cold, as I watch them pull scarves tight around their necks, pulling them up over chins and around their ears. Others tugging on their hats to keep out the cold. And I am jealous.

This is my holiday, alone, unable to enjoy the cold and the fun of the season. My pain has left me mostly housebound. I rarely go out, not a conscious choice, but one the pain made for me. I don't want to go out when I am in pain. I don't want to go out when the pain is quiet because I don’t want to trigger it.

Alone in my house, there is no one to befriend me. I have no family, they abandoned me years ago. Despite all the brain surgeries for my trigeminal neuralgia, they still think I am lazy and a malingerer. Friends I had long ago moved, died or the relationships just ended, as often happens in the normal scheme of things.

My pain is in my face. It doesn't allow me to wear a hat or pull a scarf around my ears and face. Winter and Christmas add to the litany of so many other things the pain has stolen from me.

For many people, parties await and shopping expeditions abound, anticipating the great morning of everyone around a tree, opening gifts and squealing at the wonderfulness of what they received. But they are anathemas to us.

It is not that we hate the excitement, the time spent with others celebrating, the fun of seeing all the decorations and storefronts with their mystical, musical displays. It is that we hate the pain.

It is knowing that if we say yes to the offer of going to a party, walking around the stores or exploring the neighborhood, we are saying yes to the pain. We are agreeing to put ourselves in what, for us, is danger.

And that makes Christmas not so much fun. 

“Attention must be paid,” wrote Arthur Miller in “Death of a Salesman.”  Willy Loman, the main character, was just a regular person.

“Not the finest character that ever lived,” his wife says to his sons. “But he’s a human being, and a terrible thing is happening to him. So attention must be paid.”

We are human beings and pain is the terrible thing that has happened to us. And attention must be paid.

If there is no one else, I and the pain community hear each other. We pay attention. And that is a gift to be revered.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

A Pain Poem: Zooming to Christmas

By Carol Levy, PNN Columnist

‘Twas the night after Thanksgiving
And all through the house
No one was stirring,
The only sound was my oww’s

It took all my strength
To bend and to stretch
In hopes of getting
Myself undressed.

Christmas will be at my house,
Said my Aunt Joan.
Don't anyone worry
All you'll need is a phone.

The Zooming will work,
I said with a grin.
To myself I added,
“This year the pain won’t win.”

So many other times
If I groaned or I grimaced
The others round the table
Gave me a look saying, “You're finished.”

Covid is awful,
Zooming a wonderful thing.
I can take my pills or sit silently,
And move the camera away from me.

Santa is giving me
Quite a gift.
Where the pain can’t be seen,
Or called a grift.

This year I expect better,
I know that sounds weird.
But it seems social distancing and masks
Are gifts to be cheered.

I hope you all have
Pain free holidays.
But even if there is pain,
It can be a time for hoorays.

Family and friends together
So close, yet not near.
Can make it a holiday
We don't have to fear.

If the pain starts to get us,
We won’t have to leave the table.
Just turn the webcam away,
And do what we're able

The point of this poem
Is to find a way
To keep the negative people
From making it a bad holiday.

My hope is for none of the negativity
That’s often brought.
It happens too often,
What getting together has wrought.

My wish to you all
Is the same as old Mr. Claus
Merry Christmas to all,
Full of fun and guffaws.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.”

Living with Chronic Pain During the Holiday Season

By Dr. Lynn Webster, PNN Columnist

The holiday season is underway, but that doesn't mean everyone is healthy enough to celebrate. Chronic pain does not take a vacation or even ease up in honor of Christmas, Chanukah, Kwanza or any other holiday.

People who are in unremitting pain will suffer, while others throw themselves into endless rounds of joyous holiday-related activities.

For those in pain, and their caregivers, it may not be possible to participate in shopping, decorating or partying. They may feel disenfranchised, abandoned and hopeless. I have received hundreds of emails from people in pain who feel alone. Their doctors may have abandoned them or been unable to provide medication that can help manage their pain.

Holiday-themed social media posts, movies and television shows make it appear as if everyone is, or should be, happy and productive during the final weeks of the year.

However, the truth is that the holiday season can be stressful for many people, regardless of their health. Financial burdens, overindulging in food and alcohol, and getting too little sleep can take their toll.

Family members and friends may fail to empathize, even when they have fewer distractions and social obligations. During the weeks leading up to the New Year, people in pain may feel even more isolated than usual.

Universal holiday bliss is an illusion for many. Other people may long for the commotion of the season to end, too, so calm and normality can return. If you're finding the season to be something other than a never-ending winter wonderland, you have plenty of company in feeling that it is not.

Ask for What You Need

The holiday season does not require you to pretend that you are not in pain. You do not have to wear a mask of well-being in order to ease the burden of others. It is not your job to fake a positive attitude that you do not feel. Your responsibility is to take care of yourself.

You are not obligated to accept invitations for get-togethers, shop for gifts, or decorate when you are experiencing pain.

While other people may hope that you will put on a brave face, you are not required to fake anything you do not feel. On the contrary, you should be honest about your needs and give others a chance to share part of the holiday season with you.

Do let your loved ones know that you are there, and that you are thinking of them. If mobility is an issue for you, consider inviting a relative or friend to visit you. Be up front about the fact that you could use help with meal preparation and cleanup, sending cards, and the like.  

If there is no opportunity to get together with people you care about, perhaps you can arrange an online chat using Skype or a similar service. Ask the children in your life to participate, too. Even active teenagers and sleepy toddlers may be able to find a few minutes to share quality time with you. 

While you may not be able to participate in all of the holiday season activities, you can experience some of the love and joy you deserve if you prompt others to help. 

Seek Support 

Feeling isolated may be one of the most difficult aspects of living with pain during the holiday season. Consider joining a support group so that you can share your burden with people who understand what you are going through. The U.S. Pain Foundation and the American Chronic Pain Association list support groups online that you might benefit from joining.  

Caregivers fill a role that I have described as everyday saints and unsung heroes. However, even saints and heroes can experience burnout around the holiday season.  

It's especially important at this time of year for caregivers to practice self-care. This may include tapping into a caregiver support group and asking family members and friends to provide a short-term reprieve.  

Empower Yourself 

While you may not be able to invest yourself fully in the holiday season festivities, you still have power to take positive action. Reach out to lawmakers, and ask them to support more humane opioid prescribing policies. Contact your local members of the House of Representatives and Senate. Also, send a letter to the editor of your local newspaper and contact the news departments of your local television and radio stations.  

For many Americans, the holiday season is associated with faith. This is a good opportunity to remember that scientists are working on finding better and safer ways to manage pain. Policymakers are beginning to admit that tapering unwilling patients can cause harm.

There is hope that the New Year will bring us closer to solutions for people with pain. 

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is the author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD.

Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences. 

A Pained Life: An Unexpected Gift

By Carol Levy, Columnist

This past Christmas I started thinking about a Christmas long past.

I lived in New York City at the time, but was spending the holidays at my mother's house outside Philadelphia. My family had been estranged for many years (especially from me), and for some reason one of my two sisters came to the house to spend Christmas with my mother and I.

The presents were opened, gifts from my mother to us and from us to our mother. I had nothing for my sister and expected nothing from her.

There were a few more boxes under the tree, but I assumed they were gifts for other people for later that day. To my amazement and consternation, my sister picked up one of them and handed it to me. “This is for you,” she said.

I took it with trepidation. “Why is she giving me a gift?” I asked myself while slowly removing the wrapping. I worked hard to keep my expression neutral as I pulled off the tissue paper and looked at the gift.

It was a blouse, bilious green decorated with farm animals, silos, barns and ribbons. It was probably the ugliest thing I had ever seen.

I smiled nicely, thinking what is her point? Why waste money to tell me via a blouse how much she dislikes me?

“Oh, thank you. This is.... really... nice,” I said.

My sister’s only reply was, “You're welcome.” There was nothing to indicate she meant it as the insult it sure as heck seemed to be.

Later on I walked into the kitchen. My mother was crying, “I can't believe she would give you something like that!”

It was awful. How mean, childish, and cruel. Such a waste of money merely to hurt someone, and for reasons never explained.

I returned home to New York. I hate the idea of wasting anything, so instead of throwing out the blouse, I decided I would use it as junk clothing, for painting or using solvents, etc. Nothing I could do to it would make it worse than it already was.

I had not taken it out of the box. I did so now and put it on. I looked in the mirror. To my amazement, it was adorable. In the box it was a horror, but somehow once I put it on, the ugly worked its way into cute.

I wore it until it wore out. I can't count the number of compliments I got, like “Boy, is that adorable.”

So what is the take away?

I didn't give the shirt a chance. I jumped on the meaning of it – horrid, mean and nasty. I didn't say anything to my sister or ask why she would give me something so ugly. I knew what it meant. I didn't need any help with the translation.

I think of this story sometimes, when someone I thought I had a good relationship with says to me, “Your pain can't be that bad” or “I've seen you climb the stairs, so I know you can.”

That’s like waving a red flag before a bull. Or a ringing bell to a boxer. How dare they! What does it take to get them to accept my pain and disability? My anger rises with my blood pressure. I am ready for a fight. 

But maybe I am jumping to a conclusion that never was.  Could they have meant something else? Maybe even an awkward kindness like, “I don't want you to have pain that bad. I don't want you to be so disabled.”

Maybe Ogden Nash said it best in his poem, “I Never Even Suggested It.” It was written about men and women quarreling, but I think the last line is what counts: 

In real life it takes only one to make a quarrel.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.