How I manage fatigue and sleep while living with Huntington’s

Fatigue and sleep disruptions have been some of the most challenging aspects for me while living with Huntington’s disease. They creep in slowly, often unnoticed at first, until they begin to shape the rhythm of my daily life.

Managing them has required a combination of self-awareness, adaptability, and a deep understanding of my body’s signals. It’s not just about getting enough sleep or resting when I feel tired; it’s also about crafting a lifestyle that acknowledges my energy fluctuations and respects my need for both activity and rest.

One of the first things I had to accept was that fatigue with Huntington’s is not the same as just being tired. It isn’t something that can be fixed with a good night’s sleep or an extra cup of coffee. It’s an all-encompassing exhaustion that can make even the simplest tasks feel overwhelming. A conversation that requires focus, a trip to the grocery store, or even just getting dressed can feel like climbing a mountain. I’ve learned to recognize when my body is signaling that it needs a break, and I’ve stopped pushing myself beyond my limits just to meet societal expectations of productivity.

Sleep disruptions complicate the fatigue. There are nights when I find myself unable to quiet my mind as my thoughts race and keep my body tense, even when I’m physically exhausted. Other nights, I drift off only to wake up repeatedly, never sinking into the deep, restorative sleep that my body craves. The unpredictability of these sleep disturbances can make each day feel like a guessing game: Will I have the energy to accomplish what I had planned, or will today be a day of rest and recovery?

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A routine to wind down

A key part of my approach has been creating a bedtime routine that signals to my body that it is time to wind down. This hasn’t been about strict rules but rather about consistency. I’ve experimented with different approaches, noting which habits make it easier for me to fall asleep and which seem to disrupt my rest.

Warm lighting, calming sounds, and gentle stretches before bed have become part of my nightly ritual. I’ve also learned to let go of frustration when sleep eludes me. Instead of lying in bed, willing myself to sleep, I shift my focus to relaxation. Whether it’s with deep breathing, quiet meditation, or simply resting in stillness, I remind myself that rest in itself is valuable, even if sleep doesn’t come right away.

Throughout the day, I structure my activities in a way that allows for natural energy peaks and dips. There are moments when I feel more capable, when my mind is sharper and my body more cooperative. I use these moments wisely, tackling the tasks that require the most focus and effort. I no longer feel guilty about resting when my energy is low. Instead of forcing productivity during these times, I allow myself to recharge, knowing that doing so will enable me to be more present and engaged when I do have energy.

Nutrition has also played a significant role in how I manage fatigue. I’ve become more mindful of what I eat, recognizing that certain foods provide lasting energy while others contribute to crashes that leave me even more exhausted. Hydration is just as important, as dehydration can exacerbate fatigue in ways that often go unnoticed. Small adjustments in diet and water intake have made a difference in how I feel throughout the day.

Movement, despite the exhaustion, is another factor that cannot be ignored. On days when fatigue is overwhelming, it might seem counterintuitive to engage in any physical activity. However, gentle movement, whether it’s stretching, walking, or practicing a form of mindful exercise, helps my body maintain a rhythm. If I remain completely sedentary, I often find that I feel worse, both physically and mentally. Moving my body, even in small ways, helps prevent stiffness and improves circulation, both of which contribute to overall energy levels.

Managing the emotional toll of fatigue has been just as important as managing the physical aspects. It can be frustrating to feel like I’m constantly working around my energy levels rather than having full control over them. I’ve had moments of guilt when I’ve had to cancel plans, and learning to be kind to myself when this happens has been an ongoing process. I remind myself that my worth isn’t defined by how much I accomplish in a day, and I surround myself with people who understand and support my needs rather than judge them.

One of the most empowering shifts in my mindset has been accepting that fatigue and sleep disruptions are not battles to be fought, but conditions to be managed.

Note: Huntington’s Disease News 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 Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.