Things I Wish I Knew at the Start of Our Amyloidosis Journey

It is a summer morning here in New Zealand. As I write this, a cool, gentle breeze blows through the house, and I am being serenaded by a symphony of native backyard birds.

In moments like this, I am flooded with gratitude and peace. I bask in the knowledge that no matter what 2021 brings, good or bad, the choice to make or break this new year is inside me. I may gasp for air at times, like a swimmer seeking the water’s surface, but once I align my posture with a focused intent to emerge, I will come up all right.

You, too, can become more resilient.

My husband, Aubrey, was diagnosed with hereditary amyloidosis in 2013. This disease causes a buildup of abnormal deposits of a protein called amyloid. This buildup has damaged quite a few of Aubrey’s major organs. There is no remedy or cure.

Since the start of Aubrey’s chronic illness journey, we both recognized that the impact of the disease’s progression would influence our relationship. Through the good and the bad, we were determined to brave it together. We continue to fight this uphill battle and remain optimistic for a good outcome.

Yet sometimes it feels like we’re losing the battle. The more that time passes, the more difficult the journey seems to become. I suppose we didn’t anticipate how heavy the burden from amyloidosis would be.

Nevertheless, based on my personal experience as a carer to a person with this disease, there are a few things that have helped me come up for air. Looking back, I almost wish I had received wisdom from other carers at the start of our journey. Any advice or knowledge would have helped me sidestep some of the struggles I experienced, yet could have avoided.

Following are some of the lessons I have learned.

Establish who you will be

I envisioned myself at the start of our chronic illness journey as a wonderful carer. Come rain or shine, I would ensure that Aubrey would always be comfortable, and hopefully experience few sad days. I planned to make his pain go away by being a soothing balm. I would be the epitome of patience and endurance.

But one day, I woke up overwhelmed by a sense of loss — the loss of my own identity. I was never made to be an excessively doting, loving, and caring person. I have my limits, as my children can attest to. I can’t force myself to be someone I’m not, because eventually, it will lead to resentment. And it did.

So, stop and do a self-check. Are you being honest with yourself? Are you being that person you want to be for your loved one? Are you relying on your key strengths as a person?

Effective caring starts with you being your best, most competent self.

Your focus will determine what you see

My husband does not have it easy with his disease. He suffers from constant nerve pains from polyneuropathy, he has cardiomyopathy that impedes his activities, and he does not eat or sleep well.

When I look at him, I can easily be overcome with sadness and anguish. It doesn’t take much to push me over the edge. But I have decided that I will not focus on what amyloidosis has done to him, but rather see him as a champion who continues to overcome the odds stacked against him, and who gets out of bed each day with a dedication to do better. I see hope and feel joy.

Focus brings purpose to pain

When I focus on what is right instead of what has gone wrong, I gain renewed strength.

In late 2019, I started a patient association because Aubrey and I both agreed that more needs to be done to help other patients and carers in New Zealand who deal with this disease. I am not asking you to do the same, but perhaps taking a step back and seeing what the deeper reason for your being is might be useful.

We all shape our own legacies in life. Playwright George Bernard Shaw once wrote, “People are always blaming their circumstances for what they are. I don’t believe in circumstances. The people who get on in this world are the people who get up and look for the circumstances they want, and if they can’t find them, make them.”

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Note: 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 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 FAP News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.