Living with a chronic illness is hard. Living well with a chronic illness is even harder. It takes mental and emotional strength. Courage and resilience. A sense of humor. Hope. A positive attitude. Adaptability. Faith helps. So do emotional support and community. And a reason for being.
I think people who live well with chronic illness ought to be celebrated like Olympic athletes. Their unsung accomplishments are remarkable.
Think of it: Beginning each day anew requires grit, determination, and perseverance to push through pain, illness, limitations, depression, bodies that don’t work well, brain fog, disappointment, or depression. Then, the next day they do it all over again.
It takes remarkable courage, as well, to keep moving toward an uncertain future whose only certainty is that things may get worse. It takes perseverance to devise new ways to do what we did before and can no longer do in the same way. It takes a sense of humor to laugh at ourselves and the ridiculous and to lighten the load.
In addition to all that, it takes emotional strength to let go of what we have lost and move beyond our grief, and wisdom to know the proper balance between telling others our struggles and keeping them to ourselves.
Those with chronic illness demonstrate unseen strength and courage, silently doing things every day that others neither see nor imagine. And those who do this with graciousness, kindness, and good humor are even more remarkable. There ought to be awards given to such people.
With that said, if you have a chronic condition or long-term illness, claim the strength, courage, adaptability, and resilience that gets you through and makes joy possible. These are superpowers. When you fall as you will, remember that this has happened before, and you got back up. You can, again. You’re a survivor and a role model.
Lastly, if you know someone who lives with a chronic condition, notice the silent challenges and accomplishments of their everyday life; their strength, courage, adaptability, and perseverance. Be inspired by the model of their life and tell them so. Be grateful to know such people. Those who live well with a chronic illness are a gift to this generation and those to come.
I could be your sister, mother, friend, wife, neighbor, or stranger. As I stand on the beach, I look absolutely healthy. You’d never know my heart and lungs are fragile and my immune system compromised. Multitudes of people who look equally healthy are also at grave risk from the coronavirus. We live, work, play, party, and volunteer among you. If we are going to survive the coronavirus, we need everyone to take it seriously.
The coronavirus doesn’t care about party affiliations or Presidential preferences. It doesn’t honor national or state borders. It latches onto hosts regardless of wealth, age, gender, or race. Even if it doesn’t make you ill or kill you, it let’s you carry to others like a bee carries pollen from one flower to another. It doesn’t care whether you take it seriously, think it’s ordinary, or consider it a hoax. It’s coming to your neighborhood no matter who you are and what you think of it. Take it seriously. Now.
Our communities need us to be responsible, thoughtful, and kind. This is not the time to try put others at risk by flouting medical and scientific precautions, even if you currently think they’re overblown. Within a mere two weeks of the first two deaths here, the coronavirus went from being invisible in my small community outside Seattle to killing 40 people in their 50’s – 90’s. Scientific modelling shows why we need to change our behavior. The White House, Congress, state governments, and other nations took important actions in recent days. Now it’s time for each of us to do our part.
Here’s some of what we can do.
Stay home–stores, bars, restaurants, offices. Don’t even go to private parties with friends. I know that sounds draconian but we can pass along the coronavirus for two weeks before we even have symptoms. Each person we infect will unwittingly infect others. Recognize our responsibility to others beyond ourselves and act accordingly.
“Think of yourself as one transmission away from being in the same room with someone who is high risk,” says Dr. Steven Pergam, infectious disease specialist at Seattle’s Fred Hutchinson Cancer Research Center. Consider ourselves part of a mass community shield for the elderly and others who may have less ability to fight off the virus.
Check on elderly neighbors and family. If they’re wise, they’re already in self-quarantine. They’d love phone contact with outside people, particularly friends and family. If you’re not an at-risk person (I am), offer to shop for them, pick up prescriptions, or get their mail. If they accept, leave what you get them at the door so you don’t inadvertently carry the coronavirus inside their home.
Don’t hoard toilet paper, hand sanitizer, or food. Buy what we will reasonably use in 14 days and leave the rest for others. Remember, we’re in this together.
Be kind. Tell the people in our life that we appreciate them–co-workers, clerks, employees. Tell our family and friends often that we love them. This is a time to remember that we “do not know what the day will bring forth” and that some of the people we care about may not be accessible to us very soon. Stay in touch. Many parts of life have been cancelled. Love has not.
Pay particular attention to the people and world around us: notice clouds, trees, spring flowers, smile lines, the flavors of a meal, a small hand in ours, laughter across a board game, raindrops running down a window. Use this crisis to notice how precious and extraordinary life is.
Every human being is connected to the human race from before our birth. Our belly buttons remind us that we did not come into this world on our own. We are part of a larger community that is both gift and responsibility. We honor or desecrate that holy connection by our choices in this crisis either honor or desecrate that sacred relationship. Please choose prayerfully and wisely. All of us are depending it.
Hello from the U.S. epicenter of the coronavirus: Bothell/Kirkland/Seattle. While many people here are working 24/7 to deal with the unfolding consequences of the coronavirus, life has slowed to a crawl for those of us under self-quarantine. As someone “at high risk,” I have been under self-quarantine for six days and already have cabin fever.
In just the first week, Washington State has recorded 19 deaths from coronavirus, schools serving nearly 30,000 are closed, universities have moved classes on-line, county executives have directed everyone who can do so to work from home, businesses are laying off employees for lack of work, and the coronavirus virus is popping up in new communities every day. Friday afternoon rush hour in Seattle looked like 9:00 A.M. on a Saturday instead.
As the U.S. epicenter for coronavirus, we’re a few days ahead of the rest of the country in developing a community-wide response. Here’s some of what we’ve learned so far about dealing with the coronavirus.
Healthy people who come into contact with the virus can shed it as they go about their day–shaking hands and touching tabletops, keyboards, and card readers. They probably don’t know they are carriers of the virus. This is how it is spreading so quickly in communities and around the world. It is also why people at high risk of dying from the coronavirus must self-quarantine and people around them must be extra careful.
If you can’t find a hand-sanitizer to buy, make your own with these recipes. Keep hand sanitizers in your vehicle, handbag, and pack, Use them at the grocery, every time you use a keypad, pump gas, or exchange currency. Don’t shake hands or fist bump. Elbow bumping is safer. Open doors with your elbow or hip, if possible.
Work from home if you can. Get ready for quarantine–either mandated or self-quarantine. See below for tips.
People at higher risk of severe illness must stay home completely because the health consequences for us are severe. If you’re in a high risk group, the virus is hard to treat and deadly. Do not go into public spaces or touch surfaces that members of the public may have touched. Stay away from places with lots of people and large gatherings where there will be close contact with others, including concert venues, conventions, sporting events, religious services, and crowded social gatherings.
People at higher risk include Those:
Over 60 years of age
With underlying health conditions including include heart disease, lung disease, or diabetes
With weakened immune systems
Who are pregnant
Caregivers of children with underlying health conditions should consult with healthcare providers about whether their children should stay home. Anyone who has questions about whether their condition puts them at risk for novel coronavirus should consult with their healthcare providers.
If family members or close friends are at high-risk, read this article about steps you can take to keep them safe.
Where to Find Information
Read updates and follow the recommendations of public health officials, doctors, and scientists such as the Center for Disease Control and Prevention (C.D.C.) and local and state officials. Many of President Donald Trump’s current comments about the coronavirus are misleading, untrustworthy, and even untrue. This is not a matter of whether one likes the President or not, it is a matter of keeping yourself, loved ones, and your community safe. As one on the ground at the epicenter, I have found the following sources accurate and trustworthy regarding the coronavirus: the Washington Post, the New York Times, the Seattle Times, the Center for Disease Control and Prevention,King County Public Health and Snohomish County Public Health.
How To Stay Healthy and Sane During Self-Quarantine
Stay calm. There is no need to panic. Check coronavirus updates no more than hourly for peace of mind. Think of what you can control and then do it. Here are some possibilities.
1. Wash your hands often with soap and water for 20 seconds. Time yourself by counting to 20 slowly, sing the Happy Birthday song twice, or the Alphabet Song once. Have other members of your household do so, as well. Use a hand sanitizer when soap and water are unavailable.
2. Clean all surfaces that people may have touched or where they may have rested their hands, Clean them frequently in case the virus migrated there from a purse, toys, keys, or grocery bags.
4. Buy enough pet food for 14 days. If you have dogs, get extra bones and treats to help manage their cabin fever and yours.
5. Make soups, stews, and pasta sauces. Freeze them in quart-sized containers.
6. Design a walking route inside your house and walk it several times each day. Or walk outside without touching anything that anyone else might touch. Do a few lunges, squats, and donkey kicks every day. Do stretching exercises. Movement counteracts depression and keeps the body limber.
7. Do projects for which you don’t have to go to the store. Clean the garage, spice cupboard or pantry. Sort through a closet or throw away old magazines. Do a woodworking or craft project you’ve put off. Detail your car. You’ll feel productive during the quarantine and pleased about what you accomplished.
8. Stream movies and T.V. shows. If you don’t have Netflix, Amazon Prime, or Hulu, you can get a 7-day free trial and cancel it at the end of the week. Try watching Cheers on Netflix and Hunters on Amazon for laughs and tension, respectively.
9. Get a library card and borrow e-books from home. Libraries have their catalogs available online. Read Where the Crawdads Sing by Delia Owens and News of the World by Paulette Giles to be transported to a different world.
10. Work in your yard or garden. Fresh air, trees, sunshine, and gardening help create calm and relieve depression.
11. Watch online classes on Bluprint (formerly Craftsy) or YouTube. Blueprint has low-cost cooking, decorating, sewing, woodworking, gardening, knitting, and exercise classes taught by well-known instructors. After foot surgery last year, I passed many an hour learning how to use a table saw, refine my sewing techniques, bake flaky pie crusts and make awesome pizza.
12. Call friends and family to stay in touch. Call people who are under self-quarantine. Skype and FaceTime for face-to-face contact. Go for a drive but don’t get out of your car.
If you are high risk, don’t go out in public, ever, until the coronavirus until you have medical clearance. Thinking you won’t be infected or infect anyone else if you do it just once is like thinking you can have sex once without protection and not get pregnant. You might get lucky, but you might not. Don’t risk it. Ever.