Well, never, in my world. It's on my mind this weekend because instead of seeing friends like I had planned, I spent most of my time on the couch debating when to use my nebulizer. Was it the remnants of the New Year's infection? The rumblings of something new? I'll know by the end of the week.
There’s definitely a theme to my winter survival mode: a brand-new, extra large size bottle of hand sanitizer is on my nightstand. A mini version rests comfortably in my car’s consol, another one lounges in our kitchen drawer, yet another adorns the downstairs bathroom, and a lovely raspberry-scented model is stowed away in my briefcase, where it is never more than five seconds from me.
And with this rogue band of weapons, I attempt to stave off the runny noses of toddlers with daycare colds, the spraying sneezes of commuters on crowded subway cars, the coughs and infected hands that shuffle all the papers toward me in class, the germs flying around the hospitals and doctors’ offices I frequent. Before he leaves my house every day, my chest physical therapist uses whichever bottle is handy so he doesn’t spread my germs to any other patients, and I am grateful for his vigilance.
I will admit I’ve always had germaphobe tendencies. I’m the girl who layers toilet paper on the seat in public restrooms and takes an extra paper towel to shut off the faucets and open the restroom doors after I’ve washed my hands. At one point in college I even wore flip-flops in the shower, and it wasn’t a community shower in a dorm. It was a shower in a 5-person townhouse that was cleaned weekly.
Trust me, if you had my immune system, you’d probably be the same way. Well, maybe close to it, anyway. You’d at least be into the hand hygiene.
I caught a cold on the plane ride out on my honeymoon, which took place in the summer. By April of the following year, I’d finally calmed down the lingering plague that touched off during that one plane ride. My niece had a slight earache when she slept over one night. Three days later, she was fine. Three days later, I had a ruptured eardrum, a steady river of goo streaming out of my ear, and an infection that wasn’t responding to IV antibiotics.
Um, yes. And I’m being honest when I say I’ve come a long way since I was a kid and I had strep in my ears and my knees, staph infections that required prolonged stays in isolation, numerous surgeries, and had something going off to be cultured literally every week.
For most people, a cold is synonymous with misery—congestion, sore throat, cough, poor sleep, the whole works. And a cold is every one of those miserable things.
For me and anyone else with immune or respiratory issues, a cold is synonymous with several weeks (or months) of sickness, hospitalization, multiple new medications, and protracted annoyance. It will spread to my lungs and settle down for the season, and spread to my ears and camp out there for months. It will linger and fester and mutate and replicate, and it will end up being something nastier and greener than the simple cold it started out as…but no matter what, it is never just a cold.
I may look like your typical overzealous germ freak but I prefer to see it as being proactive.
And because I love toddlers with their runny noses and wouldn’t trade the interaction with students and prefer taking public transportation to wasting gas and jostling for parking spaces downtown, I will arm myself with colorful bottles of hand sanitizer and brave the outdoors.
Switching gears from what everyone experiences—colds—to what few people experience, there was an interesting read in Newsweek’s “My Turn” column recently about living with a rare disease. The writer posited that living with something no one else around you has is a “little like being an orphan” and in some ways, that’s true. When you have something that only affects a few thousand people (the National Organization for Rare Disorders classifies an “orphan disease” as any which affects less than 200,000 people), you certainly don’t see huge fundraising campaigns, national events and color-coded ribbons.
You have to seek out whatever community exists, or you have to create your own. I don’t know a single person with PCD (and only one with bronchiectasis) in real life, and until I found Yahoo groups and other online forums for patients, I had nothing to compare my experiences to except what I knew about from cystic fibrosis patients.
And yet there are literally millions of patients living with rare diseases out there, so connecting and establishing those ties is so important.
Because I also live with conditions that many people have, I also know that while it’s harder sometimes to have something no one’s ever heard of and can’t even pronounce, the basic experience of living with a chronic condition is universal. The ups and downs, the setbacks and the progress, that fundamental tension between what you want to do and what you can do remains unchanged.
Speaking of setbacks and progress, Jenni over at ChronicBabe has a put together a great recap and response to the NYT’s recent article about fibromyalgia, Lyrica, and whether or not FM is real. Whether you have FM or not you need to check it out!