Ergonomics are extra-important, because the unnecessary muscle tension that comes from poor
“When you can’t go big, go small, go tiny. Find beauty in the view from your bed, in the dust motes dancing in the sunshine, in the sound of a loved one’s voice on the phone. Keep your heart and your mind open when everything conspires to shut you down, including your own thoughts,” McReynolds says.
Remember that you can ask for a patient advocate to accompany you to doctor appointments. Hospitals always have them available, but you may want to consider hiring an independent advocate. Come to the appointment prepared, suggests David Kaufman, an internal medicine specialist at the Center for Complex Diseases and a member of the U.S. ME/CFS Clinician Coalition who understands how difficult it can be for patients with chronic illness to get doctors to take them seriously. Bring concrete data to your appointment, he says: Do your own at-home lean test to track how your heart rate (and blood pressure, if you have a home monitor) changes, so you can come prepared with specific numbers. Describe your symptoms in clear terms, with concrete examples to demonstrate: When you say “brain fog,” what do you mean? When you say “pain,” what is the quality of the pain, and does it change with position, activity, etc.? Compare current functionality to your pre-Covid-19 status: “Before I used to be able to… Now I can only…”You may also want to consider a mobility aid, like a cane, scooter (especially at the grocery store), or wheelchair. Don’t like the idea of using a mobility aid? Jazz it up, says Teona Studemire, 23, a writer and college student in Florida who was diagnosed with ME a year ago: Bicycle shops can paint the frame and add colorful tires to wheelchairs.Of course, coming armed with data doesn’t always get a warm reception from doctors. “The risk is that if you go to a physician with a review of symptoms that’s extremely positive [meaning you have lots of symptoms in lots of categories], most physicians are going to roll their eyes and say, ‘Oh my god, I can’t deal with this,’” says Kaufman. How you present the information can, unfortunately, be important. Keep it succinct and simple: Can you capture the most important data and organize it into bullet points of one sentence each? Can you rate your symptoms on different days with a number scale as a quick snapshot of severity and how it fluctuates? And remember: You don’t have to stick with a doctor who dismisses you.
‘Gaslighted by the Medical System’: The Covid-19 Patients Left Behind
When there’s only so much care to go around, the medical system leans too hard on test results — and prejudiceelemental.medium.com
As you move around your home, keep essentials (phone, charger, lip balm, water, snacks, meds) in a small tote bag so they are always within arm’s reach. Use a laundry hamper on wheels. If your heart rate shoots up when standing, compression stockings are a good way to help prevent blood from pooling in the legs; if you have trouble getting them on and off, try some with zippers. If your home or building has stairs, leave a small chair on each landing, if possible, so you can take breaks as you go up or down.
When it comes to hygiene, skip elaborate routines: Use a shower chair, shower less often, take baths instead, or use water wipes to quickly refresh. Use dry shampoo, wash your hair less often, cut it short, or wash it while seated in the bath or on a shower chair. Brush your teeth in the shower or bath, use an electric toothbrush, or brush your teeth while walking slowly down your hallway — this will help prevent blood from pooling in your legs while you stand still. Don’t shower close to when you eat: Your stomach will need energy and blood flow to digest food, and showering takes energy, and if the water is hot, it will divert that much-needed blood supply to the surface of your skin, Stevens says. Consider using cooler water to help minimize elevated heart rate. And dry off by simply putting on a terry cloth robe instead of using a heavy towel, or get lightweight microfiber towels.
Now may not be the time to try to read all the classics or binge-watch the latest highbrow drama. Try to enjoy things you’re already familiar with so you don’t expend mental effort following new plotlines. Reread beloved books and rewatch movies you could quote by heart. Light and easy is good: “I don’t even really like romance novels that much, but my brain can handle that,” Anderson says. “I’m reading lots of mentally lightweight stuff.” If reading text is too difficult, try listening to familiar audiobooks, a podcast, or classical music instead. And remember that if you want to spend your downtime simply resting, that’s okay — it’s what your body and brain need right now.
To ensure you get the sleep you need, reduce screen time before bed (and in general), and put filters on your computer and phone to get rid of the blue light, particularly in the evening. (Yes, there are apps for that.) Try a weighted blanket, which can help to calm the nervous system, and lower the temperature in your bedroom.
Remember, too, that you don’t have to figure this all out alone. Join an online Covid-19 support group. Covid-19 is disproportionately affecting communities of color — if you’re in that cohort, seek out BIPOC-specific support groups, Studemire suggests.
And don’t neglect your mental health. Depression and anxiety do not cause long Covid-19, but it is a depressing and anxiety-producing situation. Consider finding a mental health practitioner to work with who understands chronic illness and medical trauma; many such providers are now offering telehealth appointments.In general, give yourself permission to rest and heal. There are no “shoulds” right now; you’re allowed to mourn. This is not your fault, reminds Wilhelmina Jenkins, 70, a longtime activist who lives in Atlanta and has been sick with ME since 1983.If you’re part of a marginalized group, you already know experiences with the medical system can be incredibly draining. Prepare for doctor’s appointments by planning ahead how you want to respond to anything racist, sexist, homophobic, or ableist, suggests Jemel Aguilar, 50, an associate professor of social work at Southern Connecticut State University who’s had ME for 20 years. “The easiest thing to say is ‘Thank you for your thoughts,’ and then leave and post your experience on Healthgrades,” he said. “As sick folks, there is no sense arguing with racism, because we have more important things to take care of, like our health.”