A disrupted routine

Nicole Sams’ daily routine has been uprooted by COVID-19. Other than a few trips for coffee and groceries, she hasn’t left her parent’s home in Georgia in almost two months—and she never ventures outside without a face mask and disinfectant wipes. But Nicole’s challenges (and anxieties) aren’t just about when she’ll be able to go back to work or see friends again. She’s part of a group that the World Health Organization and the CDC have identified as the most "at risk" for severe COVID-19 infections.

Nicole, like millions of other Americans, is immunocompromised. She lives with Celiac disease, "which makes my immune system react in the wrong way to an otherwise normal stimulus," she says. "Things like stress can make my immune system super weak and a cold can make me sick for three weeks." She also has Hashimotos, another autoimmune disorder, and Ehlers-Danlos syndrome, a connective tissue disorder.

For Nicole, social distancing can literally mean the difference between life and death. And not just during a pandemic. The precautionary measures that have become a part of everyday life now are not entirely new terrain to her and other people with chronic illnesses. "One of my friends has cystic fibrosis and this is what she does every single day," says Nicole. "This has been her life since she was born; wiping down coffee cups and groceries and washing her hands obsessively."

Which isn’t to say the restrictions of the COVID age has been a breeze for her. By Nicole’s own admission, in the early days of the pandemic she was an emotional mess. "I went from walking with my service dog Pippi and asking people very politely, 'Excuse me, can you back up a bit? I’m immunocompromised,'" she says, "to now I can’t go anywhere near a park without barking at people, 'Social distance! Six feet! Back away, back away!' I feel like a cranky old woman."

But amidst all the confusion and scariness over the past few months, Nicole has learned a few survival tips that have kept her safer and saner during this uncertain time. They’re tools that have served her well not just during government-mandated social isolation, but as a general road map for staying healthy when you want to be out in the world and your immune system needs an extra layer of protection.

Stay Safe and Sane Tip #1: Establish a routine

Both those with and without chronic illnesses have sometimes felt overwhelmed with the multitude of new requirements to stay healthy and safe during this pandemic. Are we washing our hands enough, and taking enough precautions when venturing outside? These are questions that hang over all of our heads. Nicole understands this uneasiness all too well. Despite being a "clean freak" long before the coronavirus, she says that her anxiety peaked during the first few weeks of COVID-19 becoming a major public health concern. "I was just cleaning everything all the time," she says. "Every 10 seconds, even if we hadn’t left the house, I was cleaning door knobs and random surfaces. I just wanted to feel as sterile as possible."

But the panic subsided, she says, once she and her family established a routine. When she and her twin sister Abby visit a coffee shop drive-thru, for example, they don’t just wear masks and gloves. They scrub every cup with a disinfectant wipe the moment it’s handed to them, and then wipe everything down again before the coffee is taken into the house. And they never forget to bring their own straws. Is it a hassle? Absolutely. But when you do something enough times, it becomes a routine.

And when it’s a routine—something you do without even thinking about it—it’s inherently less stressful. It’s no longer, When is this going to end? Life is so complicated now! It just becomes, well, life. Friends don’t always believe her when Nicole promises it gets better. "I’ve been taking extra steps to avoid germs for most of my life," she says. "It really does get to a point where it stops feeling like a chore. And you realize that taking a few extra steps to stay healthy isn’t all that bad."

Stay Safe and Sane Tip #2: When life gives you lemons, improvise

You may have noticed that it’s been difficult lately to find things like disinfectant wipes and hand sanitizers at your local grocery store or pharmacy. And there’s no guarantee they’ll start magically appearing on shelves again anytime soon. This wasn’t cause for Nicole to despair.

Rather than freak out when commercial cleaners were in short supply, she created her own with products she already had around the house. She combined an essential oil—her favorite is a "protective blend" that supports the immune system—with rubbing alcohol and put it in a spray bottle. "We use it on everything," she says. "I spray my mask with it, I’ll spray my clothes with it, I spray Pippi with it because it’s safe for dogs. It kills most bacteria and viruses. And it also smells nice, which is fun."

These aren’t the ingredients that everybody is panic-buying at the moment. "They’re all buying Lysol, or at least trying to," Nicole says. She didn’t have a stockpile of Lysol wipes, but what she did have was a closet full of essential oils and rubbing alcohol. And she’s happier with her DIY recipe. "It’s safer for me, and for my dog, and I just feel better about it," Nicole says. Necessity isn’t just the mother of invention; it sometimes leads you toward a better option.

Stay Safe and Sane Tip #3: Trust your instincts and set your boundaries

A big concern for Nicole is what happens after the restrictions are lifted and life goes back to "normal" again, however that might look in a post-COVID world. At least for Nicole, there will be no normal in the immediate future. "Something like this can change life even after it’s gone," she says. And while those without pre-COVID immunity concerns might be less reluctant to take off their masks and return to the world they remembered, people like Nicole will be slightly more cautious about what comes next.

"Am I still going to be hesitant to be around people I don’t know?" she asks. "Probably. But I’m an introvert, so I don’t like being around strangers anyway." When she’s able to be social again—and introvert jokes aside, she really does miss her friends—she’s not going to waste mental energy worrying about what others think. It’s unlikely she’ll go to a restaurant with anybody who thinks there’s no need to take further precautions just because the country is open for business again.

"I have a lot of friends I thought were very smart who haven’t been taking the coronavirus seriously at all," she says. "So will they judge me if we go to a restaurant and I want to clean my chair before I sit down? Or if I want to wipe down the table? Will they be okay with me being weird in public, even though everyone else is like, 'You’re fine now, it’s over.'"

It’s not what other people think that matters, she says. Do you feel safe? Do you think it’s too soon to stop wearing a mask, or wipe down any surface that could be contaminated? Whether it’s a pandemic or just life in general for someone with a chronic disease, trust your gut before other people who think they know what’s best for you.

Stay Safe and Sane Tip #4: Find your happiness

Nicole has always wanted to try figure skating, but during her childhood the costs were always outside their family budget. She dabbled in roller derby in high school, but her ankles were too weak, she says. But since being confined to her parents’ home, she’s decided the time might be right to finally make her skating fantasies a reality.

A week before the shelter-in-place order, right around her 22nd birthday, she got a pair of vintage Harlick skates from an online seller. They were a mess—the wheels and bearings were badly rusted—but with some WD-40, a hammer, some Diet Coke (to soak away the rust), and help from her brother, she transformed those old skates into something resembling brand new.

"Without the public rink or parks, I’ve had to learn in the garage," she says. With nothing but time to practice, Nicole has discovered that she doesn’t just love skating, she’s actually quite good at it. She’s learned how to do a two-foot spin on her quads, and as she’s shared on her Instagram page recently, her one-foot spin "is really coming along!" Nicole says it’s just something to pass the time during the lockdown, a way to "keep moving during this time of stagnancy." But you just have to see the smile on her face to realize it’s about more than exercise.

Sheltering-in-place doesn’t have to be a prison. It can be an opportunity to try a new hobby, develop a new skill, or embrace a dream that once seemed out of reach. For Nicole, it was finally becoming the skater she always knew she had the potential to be. What will it be for you?