Friday, December 30, 2011

At Least My Eyelashes Don't Hurt

One of our support group facilitators at the Lupus Foundation of Florida has a particularly resistant case of lupus along with other complications. Even when her health is horrible, she will say, "At least my eyelashes don't hurt." Jon Kabat-Zinn says it another way in Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness. "If you are breathing, there is more right with you than there is wrong."

When one part of you is in pain, all parts of you suffer. The more you think about the pain, the more it consumes you. We can step back and do a mental scan of our body and note what parts do not hurt at that moment, and like that facilitator, observe that "At least my eyelashes don't hurt."

In the chronic disease self managment workshops that I facilitate, we teach patients to use distraction when they have pain. Of course, distraction should never be used if you have chest pain! Examples of distraction are counting backwards by threes starting at one thousand, trying to remember all the words of an old song, or anything that engages the mind. I disovered that no matter how much my wrists and fingers hurt, I did not notice the pain as long as I was playing the piano. The mind cannot think of two things at the same time. What would work as a distraction for you?

Thursday, December 29, 2011

What Did You Do?

Lists. Many of us use them to keep ourselves organized. When we make a list, we have a certain determination that we are going to get things done. That's not a bad thing. Lists can also be discouraging. As time passes, and things don't get checked off, we start to beat up on ourselves. We are failures. That IS a bad thing. The last thing we need is to feel worse.

When I feel bad physically, I obviously can't accomplish much. One day, I decided to make a list of everything I did do, rather than what I thought I should do. I got up, made tea, took a shower, got dressed, made breakfast, ate, put the dishes in the sink (although I didn't wash them), and on and on. At the end of the day, I had quite a list of things that I did do. I just hadn't paid attention before.

When you feel like you aren't getting anything done, take just one day and write down everything you do. I think you will be surprised!

Wednesday, December 28, 2011

Fear of Failure, Fear of Success

When we are sick, the easiest thing to do is to stay stuck. We're sick. There is no cure. We can't do what we used to do. We aren't the people we used to be. We think that gives us the right or even the obligation to just settle for the status quo. Some of us verbalize our plight to others. We give regular updates on what body part is giving is trouble today. Some of us are silent, but our body language and expressions speak volumes.

I read an interesting quote this morning in The Artist's Way: A Spiritual Path to Creativity. We don't start things because of laziness or procrastination, but because of fear of failure or fear of success. I think it's the same for those of us who get stuck with our chronic illnesses. We often don't try to improve our health because we are afraid whatever we do will not work. We don't try to improve our health because if we are successful, we have to let part of our sick person identity go.

Despite the fact that there is no cure available to us, there are small things we can do that can improve our health. We need to muster the courage to try. The tool that musters the courage is love.

What one small thing can you do each day for yourself?

Tuesday, December 27, 2011

Fudge and Rum Balls

Every year since I was pregnant with my second son 33 years ago, I make fudge, rum balls, and other assorted treats. Even when the lupus was flaring, I dragged myself to the store and dragged myself through the baking. The thought of going to see my family without my traditional goodies was inconceivable. How could there be Christmas without fudge? This year, I made two pans of fudge. That's it. The ingredients for the rum balls are still sitting out on the counter. Maybe I will make them this week, maybe I won't.

What I knew intellectually, but finally have taken to heart is that the only person that seriously cares about making the fudge is me. My sons and their families don't have an emotional investment in fudge. I do. I created a tradition all by myself and then became a slave to it. Why do we do things like that? I don't have an answer. What I do know is this; awareness is the first step to change. I can do that. So can you.

Thursday, December 22, 2011

Christmas Children

And there were shepherds abiding in the fields, keeping watch over their flocks by night, and the angel of the Lord came upon them, and the glory of the Lord shone 'round about them, and they were sore afraid. And the angel said, "Fear not, for behold I bring you good tidings of great joy, for unto you is born this day in the city of David, a Savior, which is Christ the Lord. And this shall be a sign to you, you shall find the babe wrapped in swaddling cloths and lying in a manger."

Blessed Christmas!

Wednesday, December 21, 2011


Christmas is a horridly busy time for me. In 24 hours this year I have 5 Masses in 3 different places, a pageant, and a half hour concert with teenagers. It's a tight year! Last night, I rehearsed with the teens. Teens are the most amazing people because they don't know what might be impossible for them. They just know they have to get it done. They did very hard music and they did it well.

This afternoon, I rehearsed with the wee ones. No shepherds showed up and we were short one wise man. We pressed the angel Gabriel into service as the third wise man with a quick costume change. The multitude of the heavenly host consists of Gabriel and 3 year old twins who adore their costumes and wings. Joseph found it fascinating to turn his head dress backwards so that it covered his face. Mary beamed non-stop through the whole thing, glowing with the innocence of her namesake.

It won't be perfect no matter how much we rehearse and it doesn't have to be perfect. This is my 40th year doing Christmas as a church music director. One thing I have learned is that "it is what it is" and that it will all be just fine. It's more about the people and the process than it is about the product, although if you pay attention to the people and the process then you actually get the best product possible.

It's much the same when it comes to living with chronic illness. We do the best we can, and then we let go. It is more about our relationships with people and about our process of adapting to living with chronic illness than it is about a product.

As I was able to be gentle with the wee ones and their parents, reassuring them that all will be well, I hope this holiday season that you will know that all will be well. My prayer is that you can realize that the people and the process are the most important parts of the holiday and the chronic illness journey.

Tuesday, December 20, 2011

A Goof Off Day

Yesterday was a goof off day. I wasn't sick or anything. I was just feeling a little rebellious from two weeks of very hard work and a hard weekend ahead. I hung out in my caftan, drank tea, ate Christmas candy and played video games on my Nook. A few times, I had a case of the 'shoulds' as in, "I should be getting that music in order. I should be cleaning the bathroom. I should be making Christmas fudge." But I chilled instead.

My lupus was undiagnosed for 38 years. Every year as Christmas approached, I was tired, but pushed and then pushed a little bit more. Christmas had to be perfect. Gifts needed to be made and purchased. Baking traditions had to be upheld. Like clockwork, every year in the middle of playing midnight Mass, I would feel the beginnings of a cold-sore throat, swollen glands, fever. I soldiered through Christmas Day and crashed that night. I stayed sick until after Easter each year.

My diagnosis in 2003 was pretty dramatic. Multiple organ systems were affected. For 4 years, I had no choice but to rest when the holidays came. The lupus has gradually come under control. Along the way, I learned that no matter what you do, Christmas will come. Just being with family and friends is all that really matters. I learned to examine my priorities. And I learned that when my body calls for a goof off day, I need to listen!

Saturday, December 3, 2011

Holiday Crunch

During the pre-holiday season, women are particularly inclined to exhaust themselves in an effort to create the perfect Norman Rockwell holiday. For those of us with chronic illness, this is a particularly risky time. We think that we can just push a little more, and a little more, and then just a little more and that we will recover later. As the holidays draw near, we keep on trudging, knowing in our hearts that we are doing too much.

Reality check. What is the most important thing about the holidays for you and your family? Does your family really need 15 types of cookies and pies? What do they think is more important-you or the 15 types of cookies and pies? What do you think is more important? Is it really a good holiday if you have all the trappings but you end up crashing and can't enjoy time with the people you love? If you do just one thing this month, ask yourself several times a day, "What do I need to do to take care of myself right now?" If you end up in bed, or worse, in the hospital, what kind of holiday will your family have?