What it means to be a ‘weekend warrior’ with NMOSD
I'm in a constant tug-of-war between rest and activity
I always know when it’s been a busy week because my body tells me so. My muscles ache, I feel weak, and a burning sensation finds new areas of my body to light up. I can’t just power through my weekend like others might, enjoying fun activities after the mundane routine of the workweek. Instead, I must take a day to rest because of my neuromyelitis optica spectrum disorder (NMOSD).
During this time, I get to “bed rot” and catch up on my favorite TV shows — my version of “Netflix and chill.” But it’s not always as simple as giving NMOSD a day.
Hanging out on my sofa or spending extra time in bed has consequences. My legs start to swell, especially behind my knees. Known as peripheral edema, this condition can be caused by various issues, such as venous insufficiency, kidney damage, lymphedema, and autoimmune disease.
NMOSD is frustrating because just when I think I’ve found a rhythm and know what my body needs — a rest day, for instance — some new symptom shows up.
The push and pull between rest and activity
This is where mental fortitude makes a difference. I can choose to be taken by my blanket riptide, pulled under the covers with the hope that I feel better soon, but I know I’ll feel worse if I do nothing. So I muster my inner strength and get up.
Music helps motivate me. My daughter and I have recently been obsessed with Lady Gaga’s “The Dead Dance.”
When I remind myself that getting up isn’t about running a marathon, but simply standing, stretching, or moving to a song I love, it feels achievable. My daughter blasting Lady Gaga from the kitchen and dragging me into an impromptu dance party may not look like training, but it’s exactly the kind of momentum my body and spirit need. Living with NMOSD means redefining what progress looks like, and sometimes, that just means refusing to let the day swallow me whole.
A visit from a friend is also motivation, even though there are moments when I wish they weren’t here. Not because I don’t enjoy their company, but because my body aches and I don’t want to admit how much pain I’m in. Our tight hug comes from a place of love and admiration, but the squeeze amplifies the burning sensation that is slowly crawling down my back, like an imaginary monkey hanging on to me and attempting to drag me down.
Still, I let myself stay in the moment. I remind myself that connection matters just as much as medication or rest. The laughter my friend and I share lightens the weight of that invisible monkey, if only for a while. And even though I may pay for the visit later with more soreness and fatigue, the price is often worth it.
Isolation is the easier choice with a condition like NMOSD, but people are part of my healing, too. Sometimes motivation isn’t about forcing myself to do a workout or squeeze in some stretches; it’s about saying yes to companionship, even when my body is saying no.
Yes, I grapple with an emotional tug-of-war. While choosing to do less is sometimes necessary, I’ll never get over the guilt and frustration. Unless you live with a chronic condition, it’s hard to understand the push and pull between rest and activity.
Rest doesn’t have to mean complete stillness, though. It could mean deciding not to shop for groceries today, and instead moving around the house, playing a virtual reality game on PlayStation, and standing to make dinner. Rest is about deciding how many “spoons” (a metaphor for energy) to spend on which activities.
I’m celebrating these small wins, which are a reminder that resilience isn’t about never resting but rather about not letting rest turn into defeat.
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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