The ability to recalculate is like GPS for managing ANCA vasculitis

Most GPS apps have a feature that I’ve come to think of as a metaphor for my life with eosinophilic granulomatosis with polyangiitis (EGPA). When something changes — traffic, a road closure, a wrong turn — the app doesn’t panic. It doesn’t apologize. It simply says: “Recalculating.”

That is, more or less, what managing energy with ANCA vasculitis feels like: constant, calm, necessary recalculation.

I am in a better place than I have been in years. After a long and difficult road to my EGPA diagnosis and several treatments that didn’t work (and some that nearly broke me), I started Fasenra (benralizumab) in early 2025. For the first time in a long time, I feel something that resembles stability. I have more energy. I feel hope in a way that isn’t just wishful thinking.

And yet. A conversation that runs past 30 minutes will wipe me out for hours. Spending an afternoon with friends, even a good one that I’ve been looking forward to visiting with, requires a full day of rest beforehand and almost a full day of nothing after. That is my reality right now. I think a lot of us in this community are quietly navigating the same thing.

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Nov. 10, 2020 Columns by Sandra Ross

The War Against Fatigue

Making life possible

The fatigue that comes with ANCA vasculitis isn’t simple tiredness. I wrote about this in a previous column titled “Discovering how to move forward, even with limited energy,” where I talked about energy as capacity and how that capacity shifts, not just day to day, but hour to hour. What I want to add to that now is this: Even when things improve, the math doesn’t reset. I may have more “spoons” (a metaphor for energy levels) than I did before, but the pot is still smaller than it was before I got sick.

There is a version of “getting better” that tricks you into behaving like someone who is well. And then your body sends you an invoice — sometimes with a hefty fee!

Researchers studying energy management in chronic illness call this staying within your “energy envelope.” It’s the idea that each of us has a threshold for physical and cognitive output, and that exceeding it consistently leads to worsening symptoms and longer recovery times. I like this, as it’s like the spoon theory that I use often.

A 2025 study published in The American Journal of Medicine found that activity pacing — intentionally balancing output with rest — could be an effective management strategy for people living with chronic fatigue conditions. The research noted that pacing works best when it is genuinely responsive to the individual, not a fixed formula. In other words, it requires exactly what our disease already demands of us every day — paying attention, staying flexible, and recalculating.

I often think that because I’m finally on the right treatment, I have enough capacity for the planning to feel manageable rather than crushing. Occasionally, the sheer mental overhead of tracking what I’ve spent and what I have left exhausts me. But I don’t resent my body for it, at least not anymore.

What I’ve learned is that the willingness to be flexible is not optional. It is the skill. When I resist the recalculation and push past what I know is my line because I want things to be different than they are, I pay for it in ways that ripple out further than the day. When I honor it, I actually get to do more over time, because I’m not spending the next two days recovering from one bad call.

Another column here at ANCA Vasculitis News put language to something I’d been feeling but hadn’t named. “Understanding the different types of fatigue that come with vasculitis” described how one kind of fatigue is a steady baseline, the cost of carrying this disease every day. The other kind is a signal — a warning that something may be shifting. Learning to tell them apart has been one of the more practical things I’ve done for myself. It turns the body from a source of alarm into something more like a partner.

Socializing is worth it. Time with the people I love is worth it. I plan for it, I rest before it, I protect the day after. And I show up. That is what the recalculation is for — not to limit life, but to make life possible.

Note: ANCA Vasculitis 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 ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.