I think of pain, fatigue and memory loss as the three-legged stool upon which a great number of chronic illnesses sit. They are present in each of my own diagnoses and are inextricably attached, like Siamese triplets joined at the hip.
I’ve found it doesn’t do much good to try and deal with any one of these primary issues while ignoring the other two. It just results in more stress, which makes everything worse for me.
For example, if I get an effective prescription for pain medication, but keep racing around trying to do everything I did before I got sick, it won’t take long for the medicine to become less effective and for me to be bound to my bed with disabling fatigue.
Conversely, if I am so exhausted that I curl up in a fetal position and stay in bed all day, but don’t address ways to ease my pain, I’ll stay exhausted and won’t be getting up any time soon.
And, if I try to manage memory loss by writing everything down, but don’t manage my pain and fatigue, I am still going to show up for the wrong event, on the wrong day, and at the wrong location. I know this because I have done this, more than once.
To effectively manage long-term illness, I have found I need to be conscious and pro-active in addressing pain, fatigue and memory loss — and this reduces my stress. I don’t include stress as a leg of the stool, as I consider it a side effect, rather than a symptom, of illness.
We chronically ill patients often speak as if we are at war with our illness, which puts us war with the self, which makes us sicker. At a recent presentation to a patient support group, a woman in the back of the room listened intently as I spoke about how I finally learned to “make friends with fatigue,” then she began to cry.
“How do I make friends with fatigue?” she asked. “If I stop doing what I have always done, the illness will have won.”
I saw myself in her tired face, tears running down her cheeks.
“I felt the same way,” I told her, “but in time I learned that if I didn’t make friends with fatigue, the illness would definitely win.”
Over time, illness taught me to throw out a lot of old assumptions I had about pain and energy and how much I could trust my memory. I’ve replaced them with “Living Well Wisdom” allowing me to manage my symptoms more effectively.
For example, instead of a “no pain, no gain” approach to exercise, I now stop when it begins to hurt. Instead of exercising on a set schedule and a set routine, I give myself options and only do what I feel like.
When I’m feeling tired, I no longer get a coffee for a quick caffeine buzz. I take a rest period instead.
The changes in my thinking listed have helped me move closer to living well with illness. Maybe they will help you, too.
Joy Selak has been diagnosed with Interstitial Cystitis, Fibromyalgia, Mixed Connective Tissue Disease and Trigeminal Neuralgia.
Her book, You Don’t LOOK Sick! Living Well with Invisible Chronic Illness, takes readers through the 4 phases of chronic illness experience — Getting Sick, Being Sick, Grief and Acceptance, and Living Well — and is written from the alternating perspective of a patient and her physician.