Riding the wave of euphoria that follows my IVIG infusions

Note: This column describes the author’s own experiences with intravenous immunoglobulin (IVIG) infusions. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

The week, after my cousin’s wedding, I had an intravenous immunoglobulin (IVIG) infusion scheduled — and thank goodness for that. I was riding the struggle bus straight through Monday and Tuesday, and even the seat cushions were uncomfortable. The kind of tired I felt was deep in the bones, when thinking hurts and my muscles feel like wet noodles.

Normally, I bring my tablet to infusions so I can knock out some client work or update a website or two while I’m tethered to the IV pole. But not this time. For the first time in the three years I’ve been getting regular infusions, I left the productivity guilt at home.

Instead, I watched gloriously trashy TV — you know the kind, zero plot, maximum drama — played some games on my phone, and just sat there. I let myself be still. It was exactly what I needed.

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When I got home, my hubby and I tag-teamed a quick supper prep so we’d have something ready whenever we finally felt like eating. Then I crawled upstairs to my hammock chair — my cozy little sanctuary — and let the day settle into my bones. I didn’t last long, though. My body was already clocking out. I climbed into bed and promptly passed out … for 16 hours.

Sixteen. Hours.

When I woke up, I felt amazing. Like new-level amazing. Like “who needs coffee when you’ve got post-infusion euphoria?” amazing. (I will always need coffee, but you get the idea.)

I tried explaining it to my infusion nurse when she asked if I experience any side effects from IVIG — that almost bubbly, everything-feels-good sensation that washes over me after infusions. She laughed and nodded, saying she’d never heard anyone explain it that way. But here’s the thing: I don’t get any of the usual IVIG side effects that some folks with myasthenia gravis (MG) deal with. No IVIG flu, no headaches, no nausea. Nada.

OK, sure, the crash nap of doom might be considered a side effect. But I’ll take it. If my biggest issue is catching up on sleep in a way that makes me feel like a million bucks afterward, sign me up.

Now, this is the part of the story where my husband starts watching me like a hawk. Because he knows what happens next.

When I feel this good, I tend to push the line a little. OK, a lot. There’s a window right after an infusion where I feel like I can take on the world. I’ve been known to paint walls, rearrange furniture, plant an entire flower bed, or finally tackle that house project that’s been nagging at us for months. It’s like I forget that I have a neuromuscular condition and think I’m starring in my own HGTV show.

Hubby lovingly braces for what he calls my “post-infusion antics.” He’ll raise an eyebrow when I start making lists. He’ll hover a little when I wander into the garage looking for a hammer. He tries his best not to say “I told you so” when I overdo it and end up flat on my face the next day.

Even when I do inevitably overdo it, I wouldn’t trade that feeling for anything. Because for a few days, I get a glimpse of what it feels like to move through the world without the constant weight of MG on my shoulders. I feel light. Capable. Free.

Living with MG means I’ve had to adjust my expectations. I’ve learned how to plan, pace, preserve my energy, and honor my boundaries. But it also means that when I get these pockets of feeling good — really, truly good — I try to soak up every last drop.

So, yeah, I might paint a wall or two. I might dig in the garden. I might even alphabetize the spice rack, just because I can.

Because after days of dragging and dreaming of rest, I finally feel like me again.

Note: Myasthenia Gravis 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 Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.