Kitchen remodel chaos reminds me how much I depend on my routine
Routines provide safety and independence in my life with FA
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As I write this, noise fills my house: the nail gun, the power saw, and the construction workers’ radio. I can feel my hard-earned routine for living with Friedreich’s ataxia (FA) slipping out of reach.
I keep reminding myself that each bang and disruption brings us closer to an accessible kitchen, the one we have needed in this house for more than 20 years. We saved for this renovation, and I know it will be good. I also know that getting there is harder than I expected.
Because it is a complete remodel, it will take about six weeks, but I keep reminding myself that this disruption is temporary.
Still, after wanting this for so long, it feels strange to admit that I also feel pretty miserable. I miss my routine. And although the construction workers are friendly, I am ready to have my house back.
We have made a temporary kitchen in our guest bedroom, and the refrigerator now sits in the living room. We are doing dishes in the bathroom. Nothing from the kitchen is where it belongs, and neither am I settled.
Routine matters
Routine may seem small to someone who does not live with a rare disease, but for me, it works like scaffolding. It holds up the parts of the day that FA makes wobbly.
It is one way I manage my FA symptoms, especially fatigue. I know where my wheelchair fits. I know how long it takes me to get ready, how much energy I need to save, and when I need to stop before my body makes the decision for me. Sometimes I overestimate how much I can do, but familiar patterns still help me move through the day with more confidence.
When routine disappears, I notice how many decisions I usually do not have to make. Right now, I cannot reach for a snack on its usual shelf or move through the kitchen along the path my body has memorized. I have to think through every step: Where is the coffee? Can I carry this safely? Did someone move the furniture and block the wider path I need for my wheelchair? That extra thinking wears me out. FA already asks for constant planning, patience, and problem-solving. A disrupted routine adds another layer, and some days that layer feels heavier than I want to admit.
For people with rare diseases, routine can also protect independence. It helps us decide what we can do for ourselves and when we need help. It gives our caregivers, families, and friends a clearer way to support us without hovering. My routine lets me say “I’ve got this” and mean it. It also lets me say “I need help today” without feeling like I failed. That matters because so much of life with FA involves adjusting to losses, changes, and uncertainty. A steady rhythm gives me something I can claim as mine.
Routine also gives my mind a place to rest. I do not want every day to feel like an emergency response plan. I want the comfort of a regular breakfast, a familiar route through the house, a predictable time to work, and the ability to wheel through my home unimpeded. Those things may look ordinary from the outside, but they create safety. They help me spend my energy on living rather than constantly adapting.
This kitchen renovation reminds me how deeply I depend on routine, and I am trying not to judge myself for that. I can feel grateful for the accessible kitchen that is coming and still feel unsettled by the chaos required to get there. Both things can be true. In a few weeks, I hope to wheel into a kitchen designed for how I actually move through the world. I know this temporary mess will lead to a new routine that feels easier, safer, and more sustainable.
Until then, I will keep naming what I need, taking breaks when the noise gets to me, and reminding myself that routine is not boring. For many of us with rare diseases, routine is freedom. Flexibility matters, too; my life with FA has required plenty of it. But I am learning that flexibility works best when it has something steady to return to.
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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