‘I remain faithful’: Therapists and patients learn that recovery can’t be rushed
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How to help COVID long-haulers
While there is much physicians and therapists can’t yet explain about what’s now known as long COVID, long-haul COVID or post-acute COVID-19, they can assure patients of two things: The syndrome is real and there are treatments that might help ease the mysterious, frustrating and fatiguing side effects. And medical professionals are working toward a third assurance: Better days are ahead.
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UNC clinic offers hope and support for those battling long COVID’s mysterious symptoms
Long COVID patients work to regain control of their breathing — and their lives
‘I remain faithful’: Therapists and patients learn that recovery can’t be rushed
‘My mind just goes blank’: When ‘brain fog’ comes, patients find that therapy helps
Though some of its symptoms look familiar, long COVID is so different from other illnesses that therapists sometimes have to go against everything they know in order to help patients reclaim their lives.
“This has been a big change for me,” said Courtney Matrunick, a physical therapist for 15 years at UNC’s Department of Allied Health Sciences.
As UNC prepared to open its COVID Recovery Clinic last year, Matrunick made many late-night dives into early research on the syndrome and realized some patients suffering with long COVID had mobility and balance issues similar to those of the stroke and spinal-cord injury patients whose treatment is her specialty.
But because of the often overwhelming fatigue — mental, emotional and physical — that comes with long COVID, helping those patients rebuild their endurance would require a completely different approach.
“In physical therapy, you push your patients. Every time they come in, you push them a little harder, go a little further, to get them stronger faster,” Matrunick said. Working with long COVID patients, she said, “is the opposite. It’s much more driven by, ‘We need to find ways to protect your energy. We need to find ways to give you rests during the day.’”
Pushing too hard too soon, therapists have learned, can send a long COVID patient backward in the recovery process.
A daily energy account
Dr. John Baratta, co-founder and director of the UNC clinic, told patient Brooke Keaton to think of it this way: Every day begins with a certain amount of energy in the bank. Call it $100. Every activity — from getting out of bed to going to a medical appointment to cooking dinner or cleaning up after — debits the account.
Keaton had to learn that, “When it’s gone, it’s gone. That’s it. You’re done,” she said, no matter where she is on her to-do list when the energy runs out.
It was a hard lesson for Keaton, 41, of Charlotte, who had busy days as a preschool teacher and mother of two young girls. She got COVID-19 in December 2020, and though she wasn’t hospitalized, she ran a fever of 102 to 103 degrees for 10 days straight. Nothing would bring it down.
When the fever broke on Christmas Eve, Keaton was able to get out of bed long enough to wrap a few gifts and celebrate a little with her family.
After New Year’s she was feeling weak but went back to work when school started back. Two days later, she had pneumonia.
”After that, I thought, OK, this is gone. Then a few days later I told my husband, ‘I have some weird stuff going on.’”
Her heart rate would jump to 140 just from standing up. She started forgetting things. She would run random fevers. Skilled at hauling 10 bags of groceries, the baby and the stroller up the steps to their apartment, she was getting winded just going down the stairs. Her hips ached. Her hands would get stiff, go numb or tremble..
She couldn’t return to work and lost her job, creating a financial strain. She had anxiety and depression unlike she had ever experienced before and went from being able to manage a classroom of toddlers with grace to losing her patience with her own 3-year-old.
“There were times I thought my family would be better off without me,” Keaton said.
Her doctor ordered all kinds of tests, which provided so few explanations that Keaton feared she had turned into a hypochondriac.
“I felt like I had lost my mind,” she said.
Many symptoms, many doctors
Because long COVID is not a single illness but a group of symptoms that varies from one patient to the next, Baratta says that for now, the most effective approach is to treat each symptom. Often, each symptom requires a different doctor.
Keaton has a psychiatrist treating her anxiety and depression; a rheumatologist for the inflammatory arthritis. She has a neurologist and a cardiologist and a small pharmacy worth of prescriptions and supplements to try to regulate all her body systems that used to behave so beautifully on their own.
She is seeing progress. When she had a little money in her pocket, she bought a kitchen stool that she now calls her best friend because it has allowed her to reclaim the pleasure of cooking for her husband and daughters. She perches on the stool to do meal prep, cook and to do the dishes.
Sometimes, when she is down to her last $5 worth of energy and making supper would cost her $30 worth of reserves, she tells her husband, “I’m having a long haul day,” and they order out.
“I have had to really listen to myself, listen to my body,” Keaton said. “But when I think back to a year ago, I am definitely getting better.
“I’m a very hopeful person, a very faithful person. So I know I’m going to beat this. I don’t know how long it’s going to take, and I don’t know what the lesson learned in this is. But one day, I’ll look back and I’ll know. I remain faithful. I will get better.”
