Immunosuppressed and Spoonie Patients: Now’s the Time to Make Your Coronavirus Pandemic Plan

It’s official: The World Health Organization has designated COVID-19 a pandemic. This might sound like one of those movies with homicidal boulders chasing people downhill, or where people find themselves frozen in place, transfixed by the terrible magnetic power of a tsunami with grim results.

I’m pleased to say that pandemics don’t have to be like that. Don’t get me wrong, they involve the worldwide spread of a new infection, and that’s serious, but serious isn’t same as hopeless or inevitable. The pandemic designation is an official technical method of sending out the Bat Sign, letting the whole world know that it’s “go time.”

And I say this as a chronically ill, immunosuppressed patient with ankylosing spondylitis (a type of inflammatory arthritis). I’ve been through serious infections before. I am still experiencing lasting side effects from the 2009 swine flu. So, believe me, I’ve been taking the growing threat of COVID-19 extremely seriously from the earliest signs of its global spread.

But what is it time to go do, exactly? During pandemics, countries, health systems, communities, and individuals are meant to take intentional steps to halt or slow the spread of infection. This includes preventing new infections, and promptly treating infections and their consequences when possible.

Flattening the Curve

Why does it matter if an infection moves fast or slow?

The speed of a serious infection is directly related to the severity of disruption to the health care system and ultimately to the number of deaths from the epidemic and the collapse of the overwhelmed health care system. That’s where this Flatten the Curve concept comes from. Basically, an epidemic will show a steep curve, representing lots of infections at once unless we — as individuals and as a society — intervene to break that pattern.

Are you nervous? I’m nervous, but we know what to do. Here’s how to do your part.

1. Help break the cycle of infection

COVID-19 is a new infection so there’s no vaccine or known, proven treatment regimen. We need to work together to prevent exposure to community transmission. This starts with basic hygiene and social distancing. These are simple concepts, which may be why they’re being dismissed or made light of by many on social media, but public health and infectious disease experts know that they help. Right now, this is the best we’ve got. These steps are mission-critical if you have a chronic illness, and it’s also important that household members or anyone else you spend time with follow them too.

• Keep your hands clean by washing them often and using hand sanitizers when proper washing isn’t possible.
• Employ social distancing by limiting your exposure to people outside of your household and avoiding handshakes or other close contact.
• Cover your coughs and sneezes and wash your hands after handling used tissues, cups, plates, and silverware.
• Decontaminate your hands the moment you or others in your household return home or have contact with outsiders. Be sure that your hands are clean before reaching into your fridge or freezer, touching anything you’ll eat uncooked, or preparing anything to eat or drink. I’m saying even wash your hands before eating potato chips or celery sticks.
• Clean any frequently used items and surfaces, especially phones, door knobs, key pads, and handles.

Read more here about social distancing best practices and the proper way to wash your hands, per the CDC.

2. Stock your pantry

Identify simple meals suitable for your needs and stock up on shelf-stable or long-lasting ingredients to make them.

For example, here are some of the shelf-stable picks I am keeping right now:

• Noodles (gluten-free, because I can’t eat gluten)
• Boxed macaroni and cheese
• Instant mashed potatoes
• Brown rice
• Wild rice
• Cooked bacon
• Canned chickpeas
• Canned refried beans
• Canned tuna

For my freezer:

• Green beans
• Cooked cabbage, greens, and cauli rice
• Cooked chicken and ham

It might help you to consider the following questions:

• What’s necessary for the household?
• What can we skip?
• What can I get canned, frozen, or dry?
• Will casseroles work?
• What can I make and freeze to eat later?
• How should these items be wrapped and stored?

3. Stay informed

Identify and follow the best sources of health information and check them regularly, but not in a way that damages your mental health or mood. Your county and local government will have the most accurate information about what’s happening in your own community.

You can keep coming back to creakyjoints.org/coronavirus for information specific to those with chronic illness.

4. Review your health condition care plan

Pandemics are disruptive by their very nature because they stress every aspect of the health care system. It’s important to double check your points of contact for all of your health care providers, and anybody else who helps you get your medications and treatments. Plan for the continuity of medical care for yourself and those close to you by:

• Confirm the phone numbers for your local ER so that you can call ahead if you need to visit, after-hours practice numbers, pharmacy, insurance company, and drug manufacturer patient support hotlines.
• Review your list of medications, treatments, and diagnoses to be sure everything is up to date.
• If you have any specific concerns about managing your health conditions, call your health care provider. They can address questions about your medications, what to do about coming in for regular appointments and bloodwork, etc.

5. Touch base with your support system

Set up regular contact with your loved ones to keep current on health statuses, prevent social isolation, and to feed constructive attitudes and behaviors.

Here is more information on preventing loneliness and addressing feelings of anxiety.

6. Make a list of helpful distractions and activities

I know we’re all going through different emotional cycles related to COVID-19; there may be times when you can’t think about anything else. But it’s important to have a list of things that can distract you. As chronic illness patients, trying to reduce stress (I know, I know) and practice self-care are so important.

Is there a book on your night table or bookshelf you’ve forgotten about? What about that Netflix show you’ve been meaning to watch? Do you have a closet to clean or papers to shred?

Here are some of my favorite distractions.

Get Free Coronavirus Support for Chronic Illness Patients

Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety. Join now.