When living with chronic illness turns into ‘just a typical day’

There are many things I never imagined I would become good at because of Gaucher disease. Reading blood work? Sure. Navigating my house while attached to an IV pole? Weirdly, yes. Making a cappuccino while receiving an infusion? Apparently, also yes.

Recently, I found myself standing in the kitchen with one arm attached to an IV, making myself a cappuccino. If someone had told 21-year-old me, who had just been diagnosed, that one day I would be casually frothing milk while receiving enzyme replacement therapy, I probably would’ve had some questions. Particularly, why am I making coffee with an IV in my arm?

This is what happens when something becomes routine.

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‘What kind of milk do you prefer?’

My home infusion days have slowly stopped feeling like major medical events and started feeling like … Wednesdays. The nurse comes to my house, we set everything up, and I get connected to my medication. Then I’m basically tethered to a pole for a few hours.

When I was younger and didn’t have a child, this was actually pretty luxurious. I could sit on the couch, watch TV, take a nap, and enjoy a few hours when nobody needed anything from me. Then I had a toddler.

Suddenly, the relaxing infusion experience came with the added challenge of parenting while connected to a piece of medical equipment. Over time, we’ve developed our own system. The IV gets placed in a spot that allows me to bend my arm. My son has learned that the IV pole is not something to pull on. I have learned how to maneuver around the house without getting the tubing caught on everything.

And now, apparently, I have added barista to my list of infusion-day skills.

There is something particularly ridiculous about making coffee while receiving medication through an IV. My body is doing something extremely medical, while my brain is doing something extremely normal. It’s a very specific version of multitasking.

I suppose I could just sit down and wait for my infusion to finish. But after enough years of treatment, I’ve realized that I don’t always want infusions to feel like time taken out of my life. I want it to feel like my life.

If I’m thirsty, I’ll make a drink. If I have work to do, I’ll answer an email. If my toddler needs me, I’ll figure out how to help him without knocking over the IV pole. And if I want a cappuccino, I will make a cappuccino.

There is something oddly satisfying about that — not because I am conquering anything or because making coffee with an IV attached is some great accomplishment. It’s just funny.

I’m sure there’s a metaphor somewhere here about finding normalcy in chronic illness. But honestly, I don’t think I need one.

Sometimes an infusion is just an infusion. Sometimes it’s an infusion while watching television. Sometimes it’s an infusion while chasing a toddler. And sometimes it’s an infusion and a cappuccino.

I’ll take the cappuccino.

Note: Gaucher Disease 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 Gaucher Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Gaucher disease.