How to Stay Motivated with a Chronic Disease like FAP

How to Stay Motivated with a Chronic Disease like FAP
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Because the first symptoms of familial amyloid polyneuropathy (FAP) usually appear after a person is well into adulthood, its diagnosis can be quite a shock. Then, there’s the progressive nature of this disorder and its physical toll, including cardiac complications, numbness, and postural hypotension. It can be hard to stay motivated and on track with your life.

Here are some tips to help and encourage you.

Remember: you are not your illness

This concept is taught in some mindfulness-based stress reduction (MBSR) courses. You can be aware of your condition without inviting it to become part of you. If a symptom turns your thoughts negative, acknowledge those thoughts but don’t over-identify with them. Then indulge in something that brings you pleasure.

Honor your limitations

It’s perfectly OK, for the sake of your health, to say, “I’m so sorry, but I can’t.” You may miss out on some fun memories, but if the outing would cause considerable pain or discomfort, or leave you short of breath, then it’s a no-go. You should be OK with that, and even feel empowered.

Follow your own body clock

Since fatigue is a symptom of FAP, you don’t want to set yourself up for failure by trying to accomplish things that you don’t have the energy to do. There may be times during the day or night when your symptoms are more manageable. That’s when you should try to complete the task in hand. You know your body better than anyone.

Make lists

Our brains are hardwired to dwell on what’s wrong. To counter this tendency, make a list of things FAP prevents you from doing, then a list of potential workarounds for each limitation. If it’s too painful for you to chop vegetables, for example, get your partner or a friend to do it in advance for you. Retaking control of your situation incrementally promotes optimism.

Break down tasks

Turning tasks into smaller goals can also help lower stress and foster feelings of accomplishment. In turn, this can lead to more accomplishments and enhance your overall well-being. Perhaps you’re reorganizing and want to move a few small items to another room. Because FAP can cause carpal tunnel syndrome, and difficulties in gripping objects, why not spread the task over two or three days? Then reward yourself with something you like to do.

Make time for rest

Like many chronic diseases, FAP often causes you to feel tired. Schedule time in each day to rest or relax, and appraise your family or caregiver. When the time comes, focus on nothing except resting. This is key to your emotional and physical health.

Get lost in music or a good book

When you’re feeling down, music can be restorative. Turn on your favorite sounds and let the music transport you. One song may move you spiritually, while another may help you chill. If you need to get moving, an upbeat groove may be what the “doctor” ordered.

Likewise, a good book can lift your spirits. Or it can introduce you to another country or culture, and encourage you to learn more.

 

Last updated: April 30, 2020

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FAP 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 other qualified health providers 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. 

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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