Cold, Christmas, and Comfort

For people who have trigeminal neuralgia, Christmastime can deliver a double whammy. The pain caused by the cold can be paralyzing, making work and social interaction burdensome. Sometimes just surviving the pain is the best one can do.

Just when we're expected to enjoy "Walking in the Winter Wonderland," we are forced to retreat. The best time of year sometimes becomes the cruelest. And this is true for many, not just for people who have facial pain. The pressure of expectations weighs heavily on our minds, hearts, and spirits.

We're not going to be perfect, our friends and family aren't going to be, and perhaps the holiday will be less than idyllic. And that's okay. The key to surviving the imperfection is to find solace.

Finding comfort in one's situation can seem impossible, but it is doable. One way to start is to trim our list of activities. If you've gone to the neighbor's Christmas party and taken your special homemade divinity every year, it may have become an expectation. Expectations equal pressure. When we decline an invitation to a gathering, we often hear and sense others' disappointment. But we can get past it.

We must take care of ourselves. People tell one another to do this all the time, but often the phrase is uttered without considering its meaning. This Christmas, let's embrace the message.

Take care of yourself.

To fend off depression that can result from facial pain and as well as holiday stress, make a plan. Take a mental inventory of things, tangible and intangible, you find comforting. Write them down. Find them if you don't know where they are. Be prepared to spend a few hours alone when the rest of your family is socializing.

Need some suggestions? Make a list of music for your I-Pod especially for this time, a list that may include anything from tear-jerking songs to happy holiday tunes. You've experienced a full gamut of emotions in your life, and it is acceptable to feel them now. Believe you will have better times, less pain in the future. Unless we believe things will get better, they won't.

Put your favorite DVDs by the player. Brew a pot of your favorite tea or coffee. Peruse your favorite photo album. Prepare an online list of the funniest videos you've seen on YouTube, and have them ready to make you laugh.  Have something to read that's easy and brings you comfort.

Now is the time to schedule ways to connect with people we love. If your family or friends are distant, make a date to text them if it is painful to talk. If not, make a date to Skype or call someone special.

Recognizing our limitations also helps us let ourselves off the "expectation hook.' Sometimes getting out or pushing through can help us feel better, but sometimes it makes pain worse. No one can make these decisions for you. You are the best judge, the best predictor of the outcome. It's important to resist the pressure of going along with everyone else if you believe the activity will trigger more pain. Stand your ground: take care of yourself.

As individuals, we find solace in different ways. What brings you comfort? Your comment may help someone else.

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Surviving the dark places

Pain often brings isolation, and it is no one's fault. The person who has an illness doesn't feel like talking, socializing, or maybe even getting dressed. You have to cope with the stress that wreaks your body. And others don't know what to do.

Even if you, in all your pain, reach out for others, you may still experience social isolation. One reason is that people do not want to get to close to suffering. It's frightening to think about illness and how it could happen to them. Their lives are already stressful, and they withdraw from you.

You feel alone, wondering how God could allow you to suffer. Has he left you?

No, God has not left you in your time of distress. Perhaps the pain seems bigger than God, but it is not. Be assured that He is with you. If you need assurance, take a look at Psalm 138:


⁸ If I go up to the heavens, you are there;
       if I make my bed in the depths, you are there.
    ⁹ If I rise on the wings of the dawn,
       if I settle on the far side of the sea,
    ¹⁰ even there your hand will guide me,
       your right hand will hold me fast.
    ¹¹ If I say, "Surely the darkness will hide me
       and the light become night around me,"
    ¹² even the darkness will not be dark to you;
       the night will shine like the day,
       for darkness is as light to you. 

In your pain and aloneness, cling to things and people important to you. They may feel as though they are part of your past, but consider them part of your future.  Fight the good fight of faith: worship God, talk to Him, and focus on God's ability to bring you through this. Be prepared to be lifted up by the Lord, to rise on the wings of the dawn.

Loss Part 4: Social Isolation

Everyone has times of loneliness; it's part of the human condition. We can be lonely in the midst of a crowd or as part of a family. Social isolation is much more than loneliness. It takes hold of us when venturing outside our homes or allowing someone in our dwelling becomes threatening. Sometimes people with facial pain and other disabilities are isolated because an illness prevents them from getting out of the house or from interacting with others.

Isolation can occur for a number of reasons. Because of the disability, we lose confidence in being able to interact successfully with others. Sometimes exhaustion plays a role in becoming isolated. Other times, we experience rejection from family members or other individuals who mean a great deal to us. Ridicule from co-workers or fellow students can also be a factor. After all, why would someone cover his or her face with a scarf on a day with wonderful cool breezes? Sometimes its the way that strangers react to us that can cause us to become discouraged.

Social isolation can be overcome, step by step. One of the things that we can do is to join a support group for people who have pain. If there is not one in your area for facial pain, you may want to contact pain organizations such as the American Chronic Pain Association, The American Pain Foundation, or Rest Ministries. There are also on-line groups for people who are not yet ready to venture from home.

If you are looking for a way to get out of the house, you may want to volunteer for an organization. Find one that will be really flexible with your schedule, and make sure that the activities don't trigger your pain. You can do more solitary activities like shelve books in a library or you can choose something more social such as volunteering at a church or school. I recommend that you ease into activities like this, working no more than two to four hours a week until you are confident that you can handle more. You may also want to avoid volunteering for one-on-one scheduled activities. If you are having pain at the time of the appointment, you may feel pressure to meet the schedule - not wanting to let the other person down - rather than taking care of your own medical needs.

Pets can help us overcome isolation. Look for a group of owners who share your interests. You can usually do this through www.meetup.com or through your local ASPCA or Humane Society chapter.

There's nothing I recommend more for someone who is socially isolated than becoming involved in a friendly church. For people with facial pain, this can be difficult - downright impossible. When I lived in Gainesville and was attending a new church, people would come to shake hands with me, smile, and chat. Sometimes It caused me a lot of pain to smile or to talk. I wanted to embrace the friendliness, but I couldn't. One nice woman asked me to go to lunch, but I didn't want to try to eat in public. Having lunch with someone involved two painful things: chewing and talking. If you are interested in going to church, you may want to see if the church has a visitation pastor or volunteer. You can meet one-on-one with this person to explain your situation, and they can facilitate your needs. At a small church, you may not find someone with this role, and this means you will need to contact the pastor.

Whether it is volunteering, going to church, or finding a support group, write out your special needs - how to avoid your triggers. Make copies. Take them with you so that you won't have to explain it time after time to the new people you meet. If your first effort doesn't feel right, you have the opportunity to try again or to move on to another choice.

Everyone needs support. These are just a few ways to overcome isolation. Tiny steps are usually the safest way to begin your journey back into the community. I am wishing you the most success. It may not be easy, but you are worth the investment.

Will you share your experience with us? Your success in overcoming social isolation? Your needs? You may comment anonymously.

Loss Part 2: Initmacy

I can’t think of anything that affects intimacy as profoundly as face pain, especially when it affects the mouth. If someone can't practice good oral hygiene, romance or being close to someone may be one of the first things that go out the window.

So many times I have covered my mouth when someone has entered my home to speak with me. I try to be prepared, but surprise visits can make the Boy Scout's guide impractical. To get myself ready for planned encounters with others, I’ve used plenty of Biotene mouth wash. It’s made without alcohol, and it never bothered me to use it. Recently I tried Crest's alcohol-free mouthwash, and I was impressed. It costs much less than Biotene. The pain, though, was not nearly as acute when I tried the Listerine, so it’s not actually comparing oranges to oranges. There’s nothing, though, that compares to the old-fashioned practice of tooth-brushing and flossing. I have had months on end that my mouth never ever felt clean. I thank God that I am able once again to brush my teeth and floss.

The pain caused by jaw problems, trigeminal neuralgia, and neuropathic facial pain can stop physical intimacy dead in its tracks. In my opinion, there is nothing more romantic than a kiss from my husband.

How do you kiss someone who has trigeminal neuralgia? Very gently. If the pain is on one side of the face, approach from the other side. Talk about it if you are uneasy. If the person you loved has winced when you attempted a kiss, don’t take it personally. Your love interest may have looked as though he or she is a deer caught in the headlights. The thought of kissing can be downright scary for a person with facial pain. With conversation and tenderness, a way to share yourself with someone else is possible.

Nighttime caresses can also be challenging. I remember using a separate sheet and blanket. When my husband tugged on a sheet that we shared, it would sometimes brush up against my face. That’s all it took, brushing lightly against my face to cause the electrocution-type pains. The sensitivity to the pain and its intensity is almost impossible for others to understand, and that is a threat to intimacy of any kind: the loss of trust.

If someone doesn’t accept the plight of a person with facial pain, trust can diminish or even dissolve very quickly. I’ve never talked at length to anyone with trigeminal neuralgia who has not experienced fear of the pain. It’s important to talk about the fear and to be someone who can be trusted.

Sometimes people with trigeminal neuralgia have eye pain. It’s terrible. I remember feeling as though my eye would pop out. I didn’t want anyone or anything near my face. I didn’t want a hug, but I wanted to be close. My husband’s arm around my waist meant everything. A friend who put her hand on my back or shoulder instead of hugging me was cherished.

What do you do if there have been misunderstandings about trying to get close? One way to rebuild trust and intimacy is to practice touching with your friend, family member, or spouse. Another way is to communicate in writing if the person has difficulty talking. Send an email, write a note, use text messaging. No one wants to feel alone. Don’t let the pain win. Be close in spite of it.

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