As a caregiver, I can’t be at my best if I’m not getting enough sleep

Self-care is a crucial part of caregiving

Alliah Czarielle avatar

by Alliah Czarielle |

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As I sit at my computer, fatigue seeps into my bones. The intense heat here in the Philippines, combined with the side effects of my new acid reflux medication, amplifies my exhaustion. Mild tension headaches make looking at bright screens unbearable, rendering work nearly impossible. My body’s clear message is: “Rest, please.”

Yet, in addition to my own health worries, I’m also deeply concerned about my husband, Jared. He lives with severe hemophilia B and a seizure disorder. While I grapple with acid reflux and feelings of anxiety over an impending milestone birthday, Jared recently battled knee and ankle bleeds.

Fortunately, the intervals between his bleeding episodes offer me essential breaks. These moments grant me the opportunity to prioritize myself and attend to my personal needs. Right now, what I need most is to focus on getting more rest and relaxation.

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Losing sleep when I’m in caregiver mode

Transitioning into caregiver mode when Jared has a spontaneous bleed is second nature to me. Whether it’s the dead of night or the crack of dawn, I spring into action to ensure that he has everything he needs in terms of treatment. I prepare his infusion supplies and stand by in case he needs assistance. On the rare occasion that he has a seizure while infusing, I must do whatever it takes to keep him safe. And if pain keeps him up all night, I’ll be awake, too.

While I embrace these caregiving moments, they also highlight the challenge of balancing his needs with my own. Sleep, a crucial determinant of well-being, has always been elusive to me. In my teens, I sacrificed sleep for writing, web design, and social media. In my 20s, insomnia plagued me for days on end as anxiety about life and having a career gripped me.

Now that I’m approaching my 30s, I’m starting to see the importance of reclaiming sleep. Recently, I learned that women need slightly more sleep than men do. This partially validates my habit of sleeping in most days, even if Jared is already up and moving about. But it also prompts concern about the years I’ve spent neglecting this fundamental aspect of health.

Navigating self-care as a spouse and caregiver

When I contemplate my future aspirations, such as cherishing quality family time, finding fulfillment, and achieving financial stability, I recognize the importance of establishing consistent schedules for eating, sleeping, and exercising.

Learning to manage my anxiety is crucial as well. As a mother, I acknowledge that it’s inevitable I will worry about my husband, our daughter, our family’s future, and my own health. Yet, I must also recognize that excessive worrying consumes valuable time and hinders being productive. It also robs one of the ability to sleep, leading to a host of health issues. And the cycle repeats itself.

As a spouse and caregiver, I often face immense pressure to provide the best care for my husband. The commonly held belief that “putting them first” means sacrificing oneself entirely can create a sense of obligation to neglect personal needs. However, it’s crucial to remember that self-care is not selfish. Balancing our own well-being with the needs of our loved ones is essential.

Note: Hemophilia 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 another 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 Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.


Frances Mary Rothwell avatar

Frances Mary Rothwell

My Father also had severe hemophilia B and a seizure disorder.


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