Being a caregiver with MG means keeping my distance

There’s a strange quiet that settles over a house when two people who usually move in tandem suddenly have to live on opposite sides of it. My husband has been fighting off a nasty head and chest cold. The kind with heavy coughing and congestion that rattles the walls and fills two shopping bags full of snot-filled tissues in an afternoon.

Meanwhile, I’ve been doing my best to care for him without getting close enough to catch it myself. For most people, this is just an annoying seasonal inconvenience. For me, it’s a red flag. Respiratory illnesses have a long history of triggering my myasthenia gravis (MG) symptom exacerbations, and I’ve learned to take that risk seriously.

So we’ve essentially split the house in two. He sleeps in our bedroom, I sleep in my home office. We pass each other like ghosts in the hallway, careful not to linger or touch. At night, I run a diffuser in his room to help ease the coughing.

Caregiving becomes a kind of choreography, stepping in just far enough to help, but stepping back before my body pays the price.

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Calculating around the house

During the day, the list of small tasks grows. I make tea. I prep meals. I keep the dishes moving so he doesn’t have to. I wipe down surfaces, wash my hands until they’re raw, and try to maintain the fragile balance between helping him and protecting myself.

These are ordinary household tasks, but MG turns them into calculations. Every action has a cost, and I’m constantly running the math in my head: If I do this now, what will it take from me later? That invisible accounting is something every MG patient knows too well — the constant negotiation between responsibility and self-preservation.

One of the hardest parts, though, has been Mother Nature and the outside world. When he needed medication, the only option was a quick run to the store. It was 90 F (32 C) outside, the kind of heat that usually keeps me indoors because it isn’t safe for me to be out in it for any length of time. But he was struggling and needed the meds. So I took precautions and planned the trip to coordinate when I would be at my strongest in my own med cycle, hoping the short trip wouldn’t tip me into a flare.

MG doesn’t pause for caregiving, and caregiving doesn’t pause for MG. Sometimes the two collide, and you just do the best you can.

Caregiving guilt

There’s a particular kind of guilt that comes with caregiving from a distance. I want to sit with him, comfort him, be present in the way partners usually are when one of them is sick. But MG doesn’t always give me that option. Instead, I show care through tasks, through caution, through the boundaries that keep me well enough to keep helping.

But there’s also a quiet truth I’ve learned in these moments: Rest is part of caregiving. Protecting my body is protecting our household. If I get sick, everything stops. So I rest when I need to. I pace myself and listen to the whispered warnings of my symptoms before they have a chance to roar. And I remind myself that distance doesn’t diminish care; sometimes it’s the very thing that makes care possible.

This season has reminded me that caregiving isn’t always about closeness. Sometimes it’s about staying well enough to keep showing up. Sometimes it’s about sleeping in separate rooms, running diffusers, making tea, and doing dishes from across the house. Sometimes love looks like caution.

And sometimes the most responsible thing I can do — the most loving thing — is to rest and sleep in my office.

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.