The Well of Resources: Managing Chronic Illness

It’s the hand I have been dealt: Parkinson’s for the rest of my life. The good news is I have lucid days. With the right tools, I can remain a productive member of society and a minimal burden on family.

I maintain a mental image, my “well of resources,” throughout the day. It’s my internal fuel tank that I must (as best as possible) keep from running dry. It’s my fuel source of mental and physical energy that allows me to be present every day. If I don’t stray too far from self-management, the well doesn’t run dry, the symptoms are quieter, my outlook improves, and I can stay a productive member of society.

The well of resources has three components: the “well” (or storage), the refilling process, and the process of consumption. The well represents all the physical and mental resources I use to get through a day. Refilling is the time I rest. Consumption is being available every day to show up, having some control over my body, my mind, my life, and my identity.

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For me to put the Parkinson’s self-management tools into action and capitalize on their benefits, I need a reservoir of internal resources. I keep in mind the following things to keep the well from getting dry.

• My life must still have meaning and sacred purpose. I need to feel that I’m contributing when I’m able, or at least not draining resources from those around me. My writing for the column (and my work on my second and third books) infuses me with connections to readers so I can share thoughts, experiences, and efforts that I discover in managing my chronic condition.
• Diet is critical. I must maintain physical energy from nutritious foods and eat on a regular schedule.
• Exercise and play mean that my body is (for those moments) upright and moving around and I am doing things I enjoy. Easy gardening is particularly beneficial, as I can see the results of my efforts immediately. It is affirming to me physically, emotionally, and mentally.
• “TBM” (threshold management, brain rewiring, and mindful movement) challenges me to monitor myself and work to maintain an even schedule throughout the day.
• My days are becoming more structured with routine. I can allot certain amounts of energy from the well of resources to tasks, chores, and projects. It is not an unmovable structure; instead, routine offers me the embracing parameters of what I can do and when I can do it. Included in the routine is special attention to sleep patterns and the broken bio-clock.
• I cannot do any of this without my support partner.

I must give deliberate attention to each of these self-management tools. If I can slow the demands in my life, then the well fills up more than my life depletes it. It goes back to the concept of homeostasis. The further away from the stability of homeostasis my life swings, the more the well drains.

The danger is when the well runs dry. Life happens. I can be drained even under the best of circumstances, like sharing time with family. If my well runs dry, it can take two or three days to replenish it. It is more work to replenish than to maintain the resources, which is why I advocate so much for homeostasis.

No one offers a guidebook on how to live better with chronic illness. It’s not just dealing with body symptoms, like loss of motor control or chronic pain, but also our shifting self-identity. The changes that arrive with chronic illness affect our role in society, how we are viewed in the eyes of family and friends, and how we perceive ourselves.

Both Dr. Arthur W. Frank in his book “The Wounded Storyteller” and Dr. Oliver Sacks in his book “A Leg to Stand On” speak about the dramatic effects to brain and self-identity that occur as part of the suffering from chronic illness. My efforts to counter the worst have taken me seven years. It has taken that time and persistence to rewire my brain and seek out the science that would support my proposed approaches.

Science has not devoted much research to self-management of Parkinson’s. In the columns, I share my discoveries of how to live better and keep the well of resources managed. New symptoms challenge me to work harder and slow the progression. If I use my tools and keep my well of resources filled, it helps me to show up and lay one brick at a time along the path of life.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.