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Archive: June 2017

Energy Management-The Key to Living with NTM/Bronchiectasis

Posted on June 12, 2017   |   
Author: Gretchen   |   
0 Comments   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate

NTM/Bronchiectasis patients have an invisible disorder, which as a patient, I feel few truly understand.

Dealing with chronic lung disease on a daily basis can be extremely challenging. A major symptom for many NTM/Bronchiectasis patients is fatigue, which often fluctuates with weather changes, among other things.

I describe myself as a Type A personality whose body on many days will not cooperate and feels more like Type D. I wake up, often un-refreshed, with a to-do-list awaiting me. To make life manageable and reduce frustration, I prioritize what is essential and go from there.

After years of living with NTM, I compare my energy to money in a savings account, which requires careful budgeting. On good days I accomplish quite a bit, on bad days much less.

Feeling so unproductive would affect anyone's morale but after more than a decade of living this way, I work hard to ward off discouragement.  I still have hope that miracles will happen! We are working on many fronts to achieve these "miracles" with more companies involved in seeking treatment options and scientists working on developing new medications. It is these signs of progress that give me inspiration not to give up on a better future for me and all the others out there who are dealing with NTM/Bronchiectasis.

On bad days, I have learned to keep a journal, listing things in my life that I am grateful for.... my family and friends, my home, my education in the healthcare field (which helps in dealing with this condition), and the professionals and network that I'm in touch with. Going back and reviewing my gratitude list helps gets me through not so good days and my belief that real progress is being made within this field and that my energy level may increase keeps me going.

It is truly a balancing act. Knowing how to adapt to your life can make the difference between continual frustration and measured optimism when routine tasks, such as personal care, housekeeping, and instrumental activities of daily living can seem overwhelming.

 

 

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Tags: Bronchiectasis Energy NTM
Categories: Quality of Life

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