Searching for Peace Despite Chronic Sleep Deprivation

Searching for Peace Despite Chronic Sleep Deprivation
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Sleep is an essential part of life that comes so naturally, from the moment we come into being. Yet sometimes we forget the impact that too much or too little sleep can have on our lives.

I say “naturally,” but the truth is that falling asleep comes more easily for some, who are able to knock off and fall into slumber at the drop of a hat. Meanwhile, others take some lulling before it happens.

Those like me use sleep as an escape. While we’re sleeping, we don’t have to think about the reality of our current situation or life’s functional demands.

Finally, some people dread sleep. While the rest of the world is soundly asleep in bed, they lie awake, unable to shut their brains and bodies off.

My husband, Aubrey, who was diagnosed in 2013 with familial amyloidosis, falls into the latter category of those who can’t fall asleep no matter how hard they try. He takes sleeping aids, but even so, what dulls the body into stasis can’t dull the mind.

I’ll find him awake in the still of the night, long after all of us are in bed. Then, I’ll discover that he’s still awake in the early hours of the morning. I wish I could keep him company, but that’s impossible.

As a carer for a loved one, we must know our limitations while helping and acknowledge our constraints. We are of no help if we are impeded or impaired. So, Aubrey fends for himself when it is dark outside, and gets some sleep when others are awake. For him, the day doesn’t start until later, unless he has a medical appointment to keep.

I have often said that amyloidosis is a wretched disease that affects multiple organs in the body. It keeps my husband awake by inflicting severe nerve pain, a chronic cough that hits intermittently, bowel issues that have become more challenging, and side effects from the cocktail of medications he must take.

We have searched for a solution to Aubrey’s sleep difficulties, but aside from medication, we haven’t found any effective solutions. Sleep deprivation in an able-bodied person is destructive, but when it happens to people facing an illness, the situation becomes even more overwhelming.

Nonetheless, it’s important to make the best of what we have. Aubrey has come to terms with the less-than-ideal solution of waking up late or falling asleep sporadically during the day. It is what it is. In this battle with the disease, he must decide what is worth fighting for, and find contentment in adversity.

He must seek a shred of peace, no matter the outlook.

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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.

Jaime is a caregiver to her husband who is afflicted with the hereditary ATTR amyloidosis disease. Since his 2013 diagnosis, Jaime’s experience dealing with the effects of the disease on her husband and family have seen her go through many challenges in her vital role as caregiver. She’s required constant personal growth and flexibility to be successful in this complex, demanding, and stressful role. She is also the CEO and founder of the New Zealand Amyloidosis Patient Association, a not-for-profit charity formed in 2019 to promote and advocate for education, awareness, and treatment for patients and their families in New Zealand. Join her on this journey as she shares on the importance of being a caregiver, the role’s demands, how she’s risen above it all, and how everyone can do their part to ensure better outcomes for both the patient and caregiver’s health and well-being.
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Jaime is a caregiver to her husband who is afflicted with the hereditary ATTR amyloidosis disease. Since his 2013 diagnosis, Jaime’s experience dealing with the effects of the disease on her husband and family have seen her go through many challenges in her vital role as caregiver. She’s required constant personal growth and flexibility to be successful in this complex, demanding, and stressful role. She is also the CEO and founder of the New Zealand Amyloidosis Patient Association, a not-for-profit charity formed in 2019 to promote and advocate for education, awareness, and treatment for patients and their families in New Zealand. Join her on this journey as she shares on the importance of being a caregiver, the role’s demands, how she’s risen above it all, and how everyone can do their part to ensure better outcomes for both the patient and caregiver’s health and well-being.
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