Friday, January 24, 2014

Enroll in The School of Whatever Works

I've met so many people on my illness journey who are absolutely sure they know the type of treatment that should work to get them well. They are also sure they know what won’t work. This conviction endures even when the thing they believe in isn't successful, and the thing they reject just might be. Often people have an either/ or bias when it comes to alternative or traditional vs. western medicine. Sometimes too, there is a bias around diet, either the patient doesn't think food choices matter at all, or conversely thinks that dietary choices are the key to both getting sick and getting well.

I don’t know why treatment options are loaded with so much prejudice and rigidity, maybe it’s because of what our parents taught us, or our own past experience. Maybe it has to do with a preference for tradition for some, or a desire to try anything new for others. My experience has been that what works for me fluctuates over time. This may be due to changes in my symptoms, or advances in research or simply that my health care practitioner and I come across something new. I’ve found it’s best to keep an open mind. The one caveat I would warn against is the promise of the ‘miracle cure’, particularly when that treatment professes to cure multiple medical conditions, is flashy and expensive and does not have published peer-reviewed research or testimonials from patients who have benefited in the long term. The desperation of the chronically ill makes us easy prey for the snake oil salesman. As one caring physician said to me, “We’re all desperate to find a cure and to help our patients, that’s why we entered this field. If something out there really, truly worked, we would all be doing it.”

In addition to surgery and drug therapies in many combinations and doses, I believe I have benefited from dietary changes, physical therapy, massage therapy, hydrotherapy, acupuncture, herbal supplements, homeopathy, enforced bed rest, stress reduction and more. I've tried so many things, it’s hard to know which helped most or when, so I gave up trying to figure it out. I did find that drug therapies seemed most effective when my symptoms were most acute, and some alternative practices seemed to kick in better once my symptoms were stabilized. I can’t speak for anyone else, I think we are each unique and must find our own way, but these various strategies have worked well enough for me to keep me a student in The  School of Whatever Works.

Tuesday, January 21, 2014

Make Friends with Fatigue

Americans speak of illness in the terms of war. Dealing with cancer is almost always referred to as a fight or a battle. When a patient dies the obituary often states that death occurred only after a heroic struggle. I would submit that with chronic, painful conditions this endless fighting is a losing and costly strategy, particularly when it comes to dealing with the overwhelming fatigue that is so common among the chronically ill.

When I first became ill, I continued to cling stubbornly to the activities I’d always enjoyed—work, exercise, an active social life, the theater. The consequence of trying to maintain this busy life was that I kept getting sicker and sicker. Finally, when I started to listen to my body and rest when my body was telling me it needed to rest, things began to stabilize and then slowly improve. I learned my mind was sharpest early in the morning, but by mid-morning I needed to go back to bed for a while. Any errands or chores were best done midday. If I wanted to make dinner and enjoy an evening with my husband, I needed to rest in bed in the late afternoon for an hour or two. I learned that my energy tank often hovered near E, and I had no reserve tank. I spent a lot of time in bed for a lot of years.

I feel that making friends with fatigue was a way to honor and respect my illness and integrate my emotional and spiritual self with my physical self. It was an act of making positive peace with the reality of my new life. When I failed to pay attention to fatigue, my symptoms flared and my body let me know the rules hadn’t changed. Sometimes it was worth it to overdo a bit, and pay the price, but most of the time I complied. I learned to love the quiet and my rest period became a cherished time for contemplation and reflection, and ultimately transformation. Once I quit fighting my illness, fatigue became not only my friend, but also my teacher.