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.

Below are some adaptations that work for me. I hope you will find value in them too

• Plan your most strenuous, physical and mental energy events for the beginning of the day when your energy level is highest
• Space out activities, breaking big tasks into smaller steps
• Work on decluttering, simplifying, and organizing your home -- possessions and life-this can be extremely helpful
• Enlist a small group of helpers if possible, delegating tasks to family members, friends, or neighbors. They might appreciate that their help will improve your well-being
• You don't have to be Julia Child. Rely on easily prepared meals that are readily available in super markets and specialty shops. Remember though, eating properly is part of good health for anyone. Save elaborate, time-consuming food preparation for times when there is assistance/support in the kitchen.
• For many, heavy cooking odors and a steamy kitchen often make breathing more challenging. Try not to stand near a barbeque grill
• Have all ingredients readily accessible on organized shelves within easy reach. Assemble all equipment and ingredients before you begin. Soak pots and utensils in hot soapy water as you go
• Use paper plates when you can get away with it
• Place all household cleaning supplies in one basket so you can proceed from room to room in an energy efficient manner or leave a small cleaning basket in every room if possible
• Get rid of dust-collecting objects
• To eliminate fatiguing, limit bending or reaching; purchase a long handled dustpan and Swiffer
• Adjust the ironing board to a sitting level
• Sit when drying hair or shaving. (According to the Canadian Lung Association, sitting requires 25% less energy than standing)
• Learn to say No when you are really not up to a particular task

Enlisting the support of an occupational therapist can provide more assistance with activities of daily living if needed.

We must learn to pace ourselves, take deep diaphragmatic breaths periodically throughout the day, plan rest periods and limit overexertion if at all possible.

It is difficult to accept our limitations. Some people in our lives will never understand what we are going through but if they are not on your side, for whatever reason, all we can do is let it go.

We must move forward to the best of our abilities, the alternative is to remain stuck and spiral downward.  Journaling, speaking with a friend, or venting on this online site can be extremely therapeutic. The mind/body connection is real and negativity will only be debilitating on one's physical health.  The mind and body are interconnected. It's up to you.

Over time, you may learn to manage your life and your energy more efficiently. Goal setting and flexibility are keys to success. The goal is to be as functionally independent as possible and to enjoy life despite your limitations. I wish you the very best. :)))))

The COPD Foundation advises that before you make any changes to your medication or therapies that you first consult with your doctor.