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.

10 Ways to Avoid Depression Over the Holidays

By Barby Ingle, PNN Columnist

Do you celebrate the holidays or do you secretly dread them? For some of us, the period between Thanksgiving and St. Patrick’s Day can be the most depressing time of the year.

The first reason is that we are exposed to less sunlight during the winter. We need light to maintain our physical, mental and emotional health. There are also societal pressures that can weigh heavily on pain patients, such as not being able to participate in holiday activities. The holidays can make us depressed, financially strained, anxiety ridden, and harder to be around.

Here are some early warning signs of depression:

• Difficulty concentrating, remembering details and making decisions

• Fatigue and decreased energy

• Feelings of guilt, worthlessness, hopelessness and/or helplessness

• Insomnia, early-morning wakefulness, or excessive sleeping

• Irritability, restlessness

• Loss of interest in activities or hobbies once pleasurable, including sex

• Overeating or appetite loss

• Persistent aches or pains, headaches, cramps, or digestive problems

• Persistent sad, anxious or "empty" feelings

• Thoughts of suicide or a suicide attempt

Take this seriously, as depression carries a high risk of suicide. Anybody who expresses suicidal thoughts or intentions should be taken very seriously. Do not hesitate to call your local suicide hotline immediately.

Depression can cause you to isolate yourself from others, decreasing your mobility and increasing drug dependence. A cycle begins where depression causes and intensifies the pain and stress on your body.

It can be hard to face the emotional aspects of pain, but it is important to look at the signs and be aware of them. Remember, pain causes depression, not the other way around! 

Depression can keep you from taking care of yourself. You cannot afford to let yourself fall into dark dreary moods. Be sure, no matter how you are feeling, that you are following the goals set for your care, such as taking the correct dose of medication at the correct time of each day.

It may take a little effort to keep healthy habits when you are depressed. Here are 10 tips fellow pain patients, friends with seasonal affective disorder (SAD), and I have used over the years.  

1. Use artificial light sources. The body’s internal biological clock can get really out of sync during the winter season. Bright light therapy becomes an important tool.

2. Try something new, such as a craft or hobby.

3. Progressive muscle relaxation, hypnosis and meditation can reduce stress and pain levels

4. Stop doing things you don’t enjoy and do things you like, such as listening to music or aroma therapy.

5. Physical therapy and exercise can break the cycle of pain and help relieve depression

6. Make a list of life’s blessings, reminding yourself what you have accomplished in life. Even if you can’t do it now, you could once and no one can take that from you.

7. Cognitive and behavioral therapies teach pain patients how to avoid negative and discouraging thoughts.

8. Change everyday routines to ward off physical and emotional suffering

9. Clean out or organize an area of the house. It could be as simple as clearing a bedside table or filing your medical records. Getting organized in one area of your life can help you manage other areas more successfully.

10. Seek professional help if you start feeling overwhelmed. Dealing with chronic pain can slow recovery from depression. Specialists should treat both problems together.  

Getting your depression under control will help you focus on managing your health. As you learn to let go of anxiety and stress, it will help lower pain levels and make the holidays more enjoyable.  

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.  

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

12 Tips to Ensure Access to Healthcare This Winter

By Celeste Cooper, Guest Columnist

When we think of winter, we think of chilly days, getting cozy under a soft fluffy blanket, or curling up with a warm drink and a good book. We think of holiday festivities, and time with family and friends.

And as we prepare for winter, maybe we should also consider a safety plan that will assure access to the healthcare we need.

Those of us who live with chronic pain or illness have learned to expect the unexpected. We know that our symptoms can escalate without warning. Some of us experience a worsening of symptoms during the cold and dry winter months.  We may need additional medications to manage our symptoms or make more frequent visits to the doctor than usual. We need to do something to make sure our needs are met.

The following are some suggestions to make the winter months less intimidating:

1. Know what’s in your medicine cabinet. Take an inventory of medications, including prescriptions and over-the-counter drugs.

2. Dispose of outdated prescriptions, vitamins or supplements by following the Food and Drug Administration's guide on “How to Dispose of Unused Medicines."

3. If a replacement prescription is needed, ask your doctor or pharmacy for a refill now.

4. Know your insurance company’s policies on early refills before a winter storm hits.

5. If transportation or road conditions interfere with your ability to obtain a prescription, a substitute medication may be needed. Be sure to clarify with your pharmacist any differences in the medications or things to watch for.  

6. Most medical practices have a cancellation policy, sometimes imposing a fee if you don’t give 24-hour notice. Ask your doctor’s staff about their policy when a winter storm prevents you from keeping an appointment.

7. Identify your support network in case someone needs to pick up a prescription for you or provide transportation to the doctor.

8. Get to know your pharmacist so they can help you anticipate your needs. Ask for their business card and keep it where it is readily available, especially if you are not the one picking up your prescription.

9. Check to see if a pharmacy in your area delivers. If it’s not in your insurance network, check to see if your insurance carrier will make an exception under special circumstances.

10. Have information on an alternate pharmacy handy in case yours does not have the medication you need. Pharmacy inventories can also be affected by winter weather.

11. Consider using a mail order prescription plan. Paperwork from your physician may be required.

12. If you already use mail delivery for your medications, contact the supplier. Ask them how they protect your medications from extreme temperatures during shipment. Frigid temperatures can alter the potency and stability of certain medications. Even if you live in a temperate area, your medications may travel through areas that are not.

Let your doctor and pharmacist know you have an action plan and ask them for any suggestions that will assure your access to medication this winter.

As you get ready for winter and make plans for the holidays, also consider how you will manage your healthcare needs. If you are prepared, you can enjoy a healthier and safer winter.

Celeste Cooper, RN, is an advocate, freelance writer and author. She is also a person living with chronic pain. Celeste is lead author of Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain, and the Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain book series.

Celeste enjoys spending time with her family and the rewards she receives from interacting with nature through her writing and photography. You can learn more about Celeste’s writing, advocacy work, helpful tips, and social network connections at her website.

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.