Getting back to my routine after the holidays as a PNH patient

The holidays always create a pause, a soft space filled with food, family, laughter, and moments where illness politely steps aside, allowing joy to take the lead. But once the decorations come down and the calendar flips, life gently but firmly reminds me that we’re back to regular programming.

Paroxysmal nocturnal hemoglobinuria (PNH) waits patiently in the background while I celebrate, then steps forward again once the noise quiets. The appointments resume. The labs are scheduled. The routines return. There’s something sobering about that shift, but also something grounding. This is the life I live — not just in moments of crisis, but every day.

After the holidays, my body often experiences an increase in symptoms. Late nights, long conversations, travel, and all the extra energy poured into being present can catch up quickly. Fatigue doesn’t ask permission. Pain doesn’t check the calendar. And yet, I’ve learned not to resent the return to structure. Routine, for me, is survival. It’s how I stay balanced, informed, and prepared.

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A return to routine

Being a PNH patient means learning to reenter normal life with intention. It means listening to my body instead of pushing past my limits. It means understanding that productivity looks different now — and that rest is not failure. Some days, “back to normal” means simply getting through the day with grace.

What surprises me most is how ordinary life still feels, even with a rare condition. I still plan my week. I still work. I still laugh at things that shouldn’t be funny. I still dream. PNH has changed my perspective, not my humanity. I’ve learned how to hold both illness and normalcy at the same time.

There’s also a quiet gratitude that settles in after the holidays. Gratitude for making it through another season, for family who showed up, for conversations that healed something in me, for moments when I forgot, just for a second, that my body carries something rare and unpredictable. Those moments matter more than ever.

Going back to routine doesn’t mean leaving joy behind. It means finding it in new places. In a good lab result. In a doctor who listens. In a day when my energy holds steady. In the strength to keep moving forward, even when uncertainty remains.

So, yes, it’s back to regular programming. But this program is layered with resilience, perspective, and an unshakable appreciation for life. Being a PNH patient has taught me that normal doesn’t have to be perfect; it just has to be lived fully, one day at a time.

Note: PNH 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 PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.

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