Soldiering On

This morning I am reflecting on a young woman who clearly has a chronic illness but her diagnosis remains elusive. As with most chronic illnesses, her health is unpredictable from day to day and even hour to hour. She keeps soldiering on. I did that too until I finally got hauled off in an ambulance.

When we refuse to take the time we need to heal, that is a symptom of denial. When we believe that we are indispensable, that is a symptom of denial. When we say, "I'll be fine tomorrow" without any concrete evidence, that is a symptom of denial.

Part of this irrational thinking is that we have to push ourselves so that we won't let down our loved ones or friends or employers. The truth of the matter is that when we soldier on, we aren't giving our best. When we make promises that our health probably won't let us keep, we are letting them down even more. We create unreasonable expectations and then beat ourselves up for not meeting them.

A good way to find your compass in this situation is to pretend that you are healthy and that someone you love has what you have. What would you expect of them? What would you do to help them? What advice would you have for them? Now, do that for yourself.

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!

The Plunger List

At my darkest time with lupus, I would fall asleep hoping that I would not wake up in the morning. When I kept waking up morning after morning, realizing that I was still here, still sick, still in pain, I began thinking of ways to hasten the process. I thought about putting on a huge pile of clothes and jumping in the deep end of the pool in the apartment complex where I lived. Pretty scarey! I still had enough presence of mind to realize that I needed to do something ASAP before I thought this was normal! So I took myself to a psychiatrist and that was a disaster. I left him and left the prescription behind. When I returned a few weeks later, he commented that I looked so much better and that the meds must be working. I asked him to check my chart and when he did, the prescription fell out. He was puzzled. I gestured for him to come close and hissed, "I got a huge PLUNGER and got my head out of my butt." I figured that if I was going through this, then others must have gone through it too, and some of them must have written. Having no money, I trotted off to the public library and read and read and read. So instead of a "bucket list" I am offering you my "plunger list."

The Language of Letting Go-Melodie Beattie
The Relaxation Response-Herbert Benson
Beyond the Relaxation Response-Herbert Benson
Chronic Fatigue, Fibromyalgia amd Other Invisible Chronic Illnesses-Katrina Berne
Guilt Is the Teacher, Love is the Lesson-Joan Borysenko
Minding the Body, Mending the Mind-Joan Borysenko
The Power of the Mind to Heal-Joan Borysenko
Being Sick Well-Jeffrey Boyd
Intoxicated by My Illness-Anatole Broyard
Mind Your Heart-Aggie Casey
Anatomy of an Illness as Perceived by a Patient-Norman Cousins
Sick and Tired of Feeling Sick and Tired-Paul Donoghue and Mary Siegel
The Immune Power Personality-Henry Dreher
The Chronic Illness Workbook-Patricia Fennell
The Will to Meaning-Viktore Frankl
Woulda, Coulda, Shoulda-Arthur Freeman
Stigma-Erving Goffman
Illness and the Art of Creative Self-Expression-John Graham-Pole and Patch Adams
Mind Over Mood-Dennis Greenberger and Christine Padesky
Anatomy of Hope-Jerome GroopmanThe Measure of Our Days-Jerme Groopman
Miracle of Mindfulness-Thich Nhat Hanh
Peace Is Every Step-Thich Nhat Hanh
500 Tips for Coping with Chronic Illness-Pamela Jacobs
You Can't Afford the Luxury of a Negative Thought-John-Roger and Peter Williams
Coming to Our Senses-Jon Kabat-Zinn
Full Catastrophe Living-Jon Kabat-Zinn
Wherever You Go, There You Are-Jon Kabat-Zinn
Minding the Body-Ellyn Kaschak
On Death and Dying-Elisabeth Kubler-Ross
Living a Life that Matters-Rabbi Harold Kushner
When Bad Things Happen to Good People-Rabbi Harold Kushner
Stress Relief and Relaxation Techniques-Judith Lazarus
Living a Health Life with Chronic Conditions-Kate Lorig, et al
The Healing Mind-Paul Martin
A Delicate Balance: Living Successfully with Chronic Illness-Susan Milstrey-Wells
Care of the Soul-Thomas Moore
The Complete Guide to Your Emotions and Health-Emrika Padus
Opening Up: The Healing Power of Expressing Emotions-James Pennebaker
Writing to Heal-James Pennebaker
Molecules of Emotion-Candace Pert
We Are Not Alone: Learning to Live with Chronic Illness-Sefra Kobrin Pitzele
Taking Charge: How to Master the Eight Most Common Fears of Long Term Illness-Irene Pollin with Susan Gollant
The Chronic Illness Experience-Cheri Register
Overcoming Indecisiveness-Theodore Isaac Rubin
Stress without Distress-Hans Selye
365 Presciptions for the Soul-Bernie Siegel
How to Live Between Office Visists-Bernie Siegel
Love, Medicine, and Miracles-Bernie Siegel
The Art of Getting Well-David Spero
After Any Diagnosis-Carol Svec
It's Not All inYour Head-Susan Swedo
You Are Not Your Illness-Susan Noble Topf
Spontaneous Healing-Andrew Weill