Adjusting to life when NMOSD symptoms are under control
Treatment seems to be working for now, but I still face a mental battle
It’s a weird feeling, always waiting for the other shoe to drop, knowing there’s a secret assassin lurking in my body. It causes me anxiety. That’s what life is like with neuromyelitis optica spectrum disorder (NMOSD), which I’ve had for 16 years.
Lately, though, I’ve been OK, as I haven’t had any new NMOSD attacks or new symptoms. Even the everyday pain has been manageable. This is largely due to treatment with Ultomiris (ravulizumab-cwvz) infusions every eight weeks, along with other medications.
Strangely, I feel a little guilty when my health is stable. I get so used to survival mode that when things are calmer, I don’t trust the situation. I question every minor sensation, wondering if it was just a tingle or a little bit of fatigue, or conversely, if a symptom flare is on the horizon. NMOSD conditions me to be hypervigilant, always scanning my body for signs of exacerbations. When calmness comes, it feels suspicious to me.
Rehearsing for disaster
Peace doesn’t mean I forget the past. Still, I need to view the situation as an opportunity to give my body a moment to breathe and trust that the treatment is working. Ultomiris has given me something I haven’t felt in years: consistency and a bit of predictability in a life that had been defined by chaos.
When the physical side of chronic illness is under control, I still have to deal with the mental health aspect of it. I’ll catch myself making contingency plans in my head in case my health takes a turn for the worse. I’ll ask myself questions, such as: Who can I get to help if I relapse? How do I explain another hospitalization to my daughter? What will I do about work? My mind is always rehearsing for disaster, even when my body is at rest.
In response to all of this, I’m currently trying to focus on the positive things in my life. For example, there’s beauty in this liminal space. I’ve learned to be grateful for the moments that others may view as mundane or predictable. I’m excited to wake without pain, have a good workout, or make plans more than a few days in advance.
I’m also trying to redefine what control looks like. For example, I can’t control the antibodies in my body, but I can control how I live when they are silenced. Control to me used to mean trying to outsmart my body by being hyperaware of symptom triggers, researching medications, and planning my life around worst-case scenarios. I used to think that if I just tried hard enough, I could beat my immune system. But NMOSD doesn’t work that way. No matter how disciplined or cautious I am, the disease still finds a way to remind me that I’m not really in charge.
Currently, control is less about fighting and more about accepting. It’s choosing how I respond when uncertainty creeps in and how I nourish my body, and resting without guilt. It’s about reclaiming my narrative from fear.
I’m accepting that peace is not the absence of fear, but the decision to live fully despite it and to allow joy back in my life without feeling like I’m tempting fate.
I’m choosing to exhale and to trust the medicine, my doctors, and my own resilience. The assassin is still there, but for the first time in a long time, it feels like I’m the one strategically standing my ground.
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.
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