Finding grace for the FA caregiver during a long winter
I struggle with feeling like I'm not doing enough, even as Amelia needs more
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Winter is hard on me. The snows of January were incredibly beautiful, but the gray skies have left me feeling worn down and tired.
The winter and cold weather are also hard on Amelia, our 13-year-old daughter with Friedreich’s ataxia (FA), and she does require an extra level of care. Even years before we knew FA was the reason for her symptoms, we noticed she struggled more in the cold. Winter brought increased fatigue and a noticeable decline in abilities that often returned with the arrival of spring.
To help her cope with the cold, we keep the bathroom extra warm for baths, limit her exposure to extreme cold, and preheat the car before we go out. When Amelia gets sick, her fever can spike suddenly, so we have to monitor her temperature constantly. Many nights are spent at her bedside, and sometimes we are forced to go to the emergency room.
Finding some grace
As I navigate the daily realities of being a caregiver, I often criticize myself for feeling exhausted or overwhelmed. I’m adept at listing all the ways that I’m not doing enough, how I should improve, how I should be more engaged, more organized, more attentive, or more effective.
In social work, we call this “shoulding all over ourselves.” In moments like these, I remind myself that, as a caregiver, navigating life with FA demands a lot on my schedule — managing countless appointments, weekly interventions, and all the other things that accompany this diagnosis can be overwhelming — but it demands a lot of my head and heart, as well.
So, while I have to pay close attention to Amelia during the cold weather, I also have to be aware of what this season does to me. When I spend time “shoulding” my way through the day, I am not being sensitive to my needs. I may hope that by working harder, planning more, or staying vigilant, I might stay ahead of this relentless disease. But FA refuses to play by the rules of a “normal” life. It demands constant recalibration, endless adjustments, and navigation challenges most people won’t encounter.
I’ve been working on setting up routines and activities that energize me or just help me get through the day — a cup of warm tea, 10 minutes reading a good book, or a brisk walk on the treadmill.
Accepting that I have to take care of myself, too, isn’t admitting defeat; it’s essential for acknowledging our reality. Accepting it gives me grace and permission to feel tired during a long winter, to worry when fevers rise, and to be cautious as the baseline shifts. So I will keep warming up the car, stay vigilant for illness, and choose to move forward with my eyes on the promise of spring.
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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