Energy-saving strategies for dealing with chronic fatigue in Huntington’s

Fatigue is one of those symptoms of Huntington’s disease (HD) that people may not see or fully understand. When someone looks at me, they may assume that because I am walking, talking, writing, traveling, or speaking publicly, I must feel fine. What they do not see is the amount of energy it takes me to complete those activities.

Fatigue with HD is more than simply feeling tired after a long day. It can affect my body, concentration, balance, emotions, and ability to complete everyday tasks. My brain and body may be working harder to do things that once happened automatically. Managing involuntary movements, staying focused, maintaining my balance, remembering information, and navigating stimulating environments all require energy.

I have learned that my energy is not unlimited. I have to treat it like a valuable resource. If I spend it all at once, I may not have enough left for the activities that matter most.

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March 20, 2025 Columns by Tanita Allen

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

How I conserve my energy

One of the most important strategies I use is pacing. In the past, I sometimes felt that I had to finish everything in one sitting. I would push myself until a task was complete, even when my body was telling me to stop. That often left me exhausted and made my other symptoms worse.

Now, I try to break larger activities into smaller steps. I may clean one area instead of the entire house. I may complete part of an assignment, take a break, and return to it later. When preparing for a speaking engagement or trip, I begin early so I don’t have to rush at the last minute.

Pacing does not mean that I am lazy or unmotivated. It means that I understand my body and want to work with it instead of constantly fighting against it.

Rest is also part of productivity. I’ve had to change my thinking about what it means to accomplish something. Sometimes the most responsible thing I can do is sit down, close my eyes, reduce stimulation, or take a nap. Rest can help prevent my fatigue from reaching the point where I become overwhelmed, unsteady, irritable, or unable to think clearly.

I also try to plan demanding activities during the time of day when I usually have the most energy. If I have an important appointment, class, presentation, or meeting, I avoid filling the rest of that day with unnecessary obligations. I may need time to prepare beforehand and recover afterward.

Prioritizing is another essential part of conserving energy. I ask myself what truly needs to be done today, what can wait, and what someone else can help me complete. Not every task deserves the same amount of energy. Some days, my priorities may be attending a medical appointment, preparing a healthy meal, taking my medication, and resting. That is enough.

Also, using a wheelchair in a large airport allows me to save my energy for the actual purpose of my trip. Sitting on a shower chair may reduce the risk of falling and leave me with more energy after getting dressed. Holding a handrail, using a cart while shopping, or choosing a seat near an exit can make an activity safer and less exhausting.

I’ve also learned to simplify tasks. I keep frequently used items within easy reach. I sit while preparing food or getting dressed when needed. I use online shopping, delivery services, voice-to-text technology, calendars, alarms, and written lists. These tools reduce the physical and mental energy required to manage my day.

Asking for help is another energy-saving strategy, although it is not always easy. Independence has always been important to me. However, I now understand that accepting help can preserve my independence. Allowing someone to drive, carry a bag, pick up groceries, or accompany me to an appointment can help me use my limited energy more wisely.

Stress also contributes to fatigue. When I am anxious or overstimulated, my movements may increase, my thoughts may become less clear, and my body may feel drained. Mindfulness, meditation, journaling, breathing exercises, gentle movement, and quiet time help me regulate my nervous system. I try to pay attention to the early signs that I am becoming tired instead of waiting until my body forces me to stop.

Living with fatigue requires flexibility. There are days when I can accomplish more and days when even simple activities feel difficult. I am learning not to judge myself by how much I complete.

My worth is not measured by how busy I am. Conserving energy allows me to remain present for the people, responsibilities, and experiences that matter most. Slowing down is not giving up. It is one of the ways I continue to live, advocate, and thrive with HD.

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.