My daffodils show me their sunny faces, and remind me to be kind to myself
Some days, the endless cycle of self-care and basic living feels overwhelming
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Yesterday, I woke up with a long to-do list, but I didn’t want to get out of bed. Simply sitting up in my cozy, adjustable bed and watching YouTube all day was what I wanted. The covers were calling me to stay.
But, like most people, I had to pee, so there’d be none of that.
Some days, the endless cycle of self-care and basic living feels overwhelming. The routine of getting out of bed, brushing my teeth, preparing meals, exercising, and maintaining personal hygiene turns into a list of obligations rather than moments of self-nurturing. Even simple chores, like tidying up or doing laundry, can feel heavy and drain my motivation, leaving a sense of exhaustion that’s hard to shake.
Living with Friedreich’s ataxia (FA) only makes these feelings worse. Its symptoms, which cause poor dexterity, weak muscles, and reliance on a wheelchair, mean that things take me a long time to do. Daily tasks often fill my entire day, and doing them can leave me exhausted and emotionally drained.
The repetitiveness of it all can make these responsibilities seem dull and unfulfilling. When time and energy are limited, it’s easy to feel resentful about how much of both are used up by necessities rather than by activities that spark joy or creativity. Each day brings the same tasks, and over time, they start to blend together, further fueling my exhaustion and discouragement.
Reaching for moments of joy
I got out of bed, begrudgingly, and let my service dog out for her first pee of the day. It was a beautiful day, sunny but chilly, as I rolled my wheelchair around my flower beds. The green shoots of my daffodils had optimistically popped out of the ground, and I couldn’t wait to see their bright, yellow blooms.
My life with FA is full of challenges. But I remember that I have a large and supportive community, and I am reminded that I must be kind to myself and understand that bad feelings are valid, and everyone needs support sometimes.
Overwhelm and malaise are welcome to visit. I am just a person trying to manage FA, after all. It is only natural for me to feel this way some days, but those feelings do not have my permission to stay. Being aware of when they are present and allowing them in without letting them linger helps me work through days when nothing fun seems to be happening. Psychology Today explains how important it is for all of us to embrace and release our emotions.
My daffodils remind me that I have their sunny faces to look forward to. They also remind me that I have to keep plodding ahead, facing the winter underground, to reach those moments of joy and creativity.
Note: Friedreich’s Ataxia 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 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 Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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