NMOSD has a way of opening our eyes to the little luxuries in life

I’m always reminding my friends to take whatever wins they can get, because life is hard. This is especially true when it includes neuromyelitis optica spectrum disorder (NMOSD).

Before my life with a chronic illness, I took a lot of things for granted. I moved through the world without noticing the small comforts woven into everyday life. I took everything at face value and never paused long enough to appreciate any of it.

It’s funny how NMOSD slows me down in ways I never expected. It forces me to notice the little luxuries that used to slip by unnoticed, while helping me to ignore the life stressors that truly don’t matter. The disease sharpens my focus: I see what’s worth celebrating and what’s worth letting go.

One of my favorite luxuries is a long, warm shower followed by slipping into clean bed sheets. It’s such a simple ritual, but it gives me the kind of rest my body rarely finds on its own. And when my pug, Magnus, also has had a bath and curls up against me, it’s the best sleep I get. It’s comfort layered on comfort, something I never used to think twice about.

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There’s also something deeply satisfying about that first sip of a perfectly hot cup of tea or coffee in the morning. I stand in my kitchen, holding the mug, grateful for the moment and that I’m standing at all. NMOSD has tried to take my mobility from me, so every steady step feels like a quiet victory.

Energy conservation becomes an art form on days when my to‑do list is endless and everything feels urgent. It always seems like my NMOSD symptoms love to flare when I’m busiest, which is why finding the perfect parking spot near an entrance feels like the parking gods are smiling down on me. It means I don’t have to use the disabled parking spaces and endure the questioning stares from people who don’t understand invisible illness. It’s a tiny moment of ease and a luxury most people never realize has significance.

I get a bit embarrassed admitting this, but sometimes even wearing clothes can be painful. The burning sensation that comes with NMOSD makes it uncomfortable to have anything touching my skin. Some days, I’ll change my outfit three or four times, trying to find something that doesn’t hurt. So, when I put on an outfit that feels good and looks good — and it stays comfortable all day — that’s a win I celebrate.

Another little luxury I never appreciated before NMOSD is an undisturbed nap. Rest used to be something I squeezed in when I felt like it, not something I protected. Now, when I manage to fall asleep in the middle of the day without pain waking me, without pins and needles buzzing through my limbs, without my skin burning from even the softest fabric, or without someone I wasn’t expecting ringing my doorbell, it feels like a gift. A full, uninterrupted nap resets my body in a way nothing else can. I wake up feeling a little more human, a little less overwhelmed, and genuinely grateful for the quiet hour my NMOSD decided to grant me.

I’m most appreciative when I get to keep a commitment and my day goes as planned. Getting to meet a friend, run an errand, or attend an appointment as scheduled feels like a luxury. It means NMOSD didn’t steal the day from me.

These little luxuries don’t cure NMOSD, but they soften the edges of a life that can feel sharp and unpredictable. They remind me that joy still exists in small, ordinary places, and that noticing it is its own kind of resilience.

Note: Neuromyelitis 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 providers 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 Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.