Staying organized with FA isn’t easy, but it helps me cope with challenges
I want my energy to go toward living, not hunting for things
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This morning, I rolled into my office and found papers scattered across my desk. It looked as though a mischievous sprite had emptied the file cabinet. Unfortunately, I knew the sprite was me.
Being organized makes life with Friedreich’s ataxia (FA) easier. When everything has an accessible home, I spend less time searching and more time doing what matters to me. A clear desk also helps me focus.
Because I live with a chronic disease that causes fatigue, I want my energy to go toward living, not hunting for things. Keeping what I need within reach leaves more energy for writing, connecting with friends, or simply enjoying my garden. Organization isn’t about a perfect home; it’s about a workable one.
Making my home workable, however, takes effort I don’t always have.
FA affects my fine motor skills, and using a wheelchair adds another layer of difficulty. Filing papers, hanging laundry, and sorting silverware aren’t quick chores for me. Each requires deliberate effort, and as FA progresses, each takes longer. Sometimes, putting something away feels like one task too many. So I leave it for later, and later becomes a pile.
Often, FA has already sapped the energy I need to get organized. The fatigue is real, but I still catch myself feeling lazy when chores go undone. Some days, getting out of bed is a chore, and settling on the couch to rewatch season two of “Bridgerton” is all I can manage. I appreciate an organized home on those days, too — I just don’t have the energy to create one. Even after 45 years of living with FA, I find it hard to give myself permission to rest.
On days when I do have the energy, time can be the obstacle. I don’t always account for how long staying organized takes. Doing so means accepting that I can no longer accomplish as much in a day as I once did. Some tasks are beyond my physical abilities now, and the ones I can do take longer.
What I need is help, not another reason to beat myself up about untidiness. Having someone file papers or put laundry within reach could make a real difference. I can decide where things belong without doing every physical task myself. Asking for support doesn’t mean giving up my independence. It means finding a way to make daily life work for me, one manageable pile at a time.
The next task on my to-do list? Lunch. After that, I’m calling the local nonprofit serving people with disabilities to start getting the help I need. The papers can wait a little longer.
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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