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.
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
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.
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