12 Things I Wish I had Known Before I got Sick With Covid-19
Today marks my 54th day with symptoms of covid-19. It’s a good day so far. Granted, I’m dizzy and get winded easily. I sit down a lot…
Photo by blueberry Maki on Unsplash
Today marks my 54th day with symptoms of covid-19. It’s a good day so far. Granted, I’m dizzy and get winded easily. I sit down a lot, something I rarely did in my pre-covid life. I’m on the upswing, though. Unfortunately, every upswing so far has been followed by yet another downswing. It’s a roller coaster, this virus, complete with drops, twists, and loops.
This isn’t the common narrative, I know. We’re told that most people will have no symptoms or mild symptoms and will recover within a few weeks. That might be true. I hope it is true for most people. But we need to acknowledge the fact that for a certain subset of us, the ride is much bumpier, much longer, with many more surprises. This subset includes a surprising number of young, active, healthy people like me.
I’m a member of two different covid-19 support groups now, one on Facebook and one through Body Politic. It turns out I’m not the only one feeling jarred by the relentlessness of this roller coaster. It’s been affirming, comforting, and saddening to see my own experiences mirrored so precisely in the experiences of others, many of whom have been battling these symptoms for more than 40, 50, or even 60 days. What I write below is based primarily on firsthand experience, but as I now know, my experience is not unique.
Here is what I wish I had known, what I wish someone could have told me when I first got sick:
1) All 10,000 of your symptoms are normal, including but not limited to sore throat, cough, fever, fatigue, dizziness, shortness of breath, shakiness, vision disturbances, headache, racing heart, irregular pulse, kidney pain, back pain, chest burning and pain, loss of smell or taste, loss of appetite, nausea, diarrhea, vomiting, brain fog, ear pain, rashes or sores, muscle pain, joint pain, sneezing, runny nose, tingling limbs, abdominal pain, and insomnia. All of these symptoms — and more — can occur in patients with covid-19. I experienced 23 of them. The fact that they are normal doesn’t mean they aren’t serious. Sometimes they are, sometimes they aren’t. Call your doctor if you’re experiencing them. Go to the ER if you feel like that’s where you need to be. But please spare yourself the agony of fretting over whether what you’re experiencing is normal. The unfortunate answer is ‘yes’.
2) The symptoms are easier to list than to live. They can be persistent and intense. “Headache,” for example, may refer to cranial pressure so overpowering that you worry about having a stroke. Dizziness can be extreme enough to prevent you from standing to brush your teeth. That fever may last for weeks. And don’t get me started on the tachycardia.
3) It really is a roller coaster. You may feel like hell on Monday, basically fine on Tuesday, only to feel like hell hit by a hurricane on Wednesday. My symptoms have ebbed, flowed, morphed, and changed in a way that I haven’t experienced with any other illness — a reality echoed by members of the covid-19 support groups. To use myself as an example, week one brought a sore throat, a mild cough, burning in the chest during exercise, and fatigue. These symptoms completely resolved for a few days and then returned as chest pain, shortness of breath, racing heart, extreme dizziness, shakiness, and fatigue. In the days that followed, I developed a fever, back pain, unquenchable thirst, abdominal pain, kidney pain, heart palpitations, nausea, and vision disturbances (among other things). Somewhere around week three the intense headache started, just as many other symptoms were letting up. Next, I had a couple great weeks. Sure, a handful of my symptoms lingered, but I felt well enough to function. Unfortunately, I got a little too functiony. I overdid it and landed back in bed for four days (days 48–51) with a fever and reemergence of other more severe symptoms. I’m up again now and gradually regaining strength. Two steps forward, one step back. Five steps forward, two steps back. There is a silver lining to this ebb and flow: the good stretches start to get longer, and the bad stretches shrink or become less intense.
4) You’re going to feel all the feelings. You will feel scared and anxious. You may feel sad, depressed, lonely, isolated, misunderstood, and angry. There will be no satisfactory answer to the question “why me?” but you will probably ask it anyway. If you leave a bit of space around these heavy feelings, you’ll feel other things, too: gratitude, love, hope, compassion, awe. More on that later.
5) Decide on day one that you are allowed to be sick for a long time. I hope you won’t be. I hope you’re one of the lucky ones. I was sure I would be lucky. I’m youngish! And fit! And healthy! But now I’ve been sick for nearly eight weeks. It would have been nice to have realized that this was a possibility earlier on. I would have made better Netflix decisions — committed to more ambitious viewing projects — if I had realized how long I would be stuck in bed. All joking aside, do yourself a favor, and decide now that you don’t owe your boss or your coworkers or your spouse or your children a speedy recovery. Trying to do too much too soon will set you back, which helps no one. Maybe you powered through the flu and bounced back from your knee surgery like a champ? That’s great! Maybe you won an iron man triathlon when you were nine months pregnant with triplets and then delivered the babies yourself at the podium? That’s super cool, now go get the f%*$ back in bed. I’ve lost count of how many times I’ve heard words like this in the support group: “I was feeling so much better, so I [insert any body-taxing activity here like ‘tried to work’, ‘went for a run’, or ‘did a keg stand’], and then bam, my symptoms came back.” I’ve had to say those words more than once myself. I’ll let you guess which of the three activities I’ve been guilty of.
6) Accept that there are no experts (yet). If you consult with more than one doctor, expect to receive conflicting information and advice. This doesn’t necessarily mean one of your doctor’s is no good, and it certainly doesn’t mean you shouldn’t consult with your doctor. You should. Just know that doctors and patients alike are scrambling for information right now. The data is continually shifting the ground beneath us. New treatments are being tested, promising treatments are at times being debunked, and new theories are being postulated. There is a lot of trial and error here, and you will likely have to make some difficult decisions on your own.
If you don’t require a ventilator, an ICU bed, or hospitalization, you may feel ignored or discounted by medical professionals. Some doctors have caught onto the fact that this illness can stick around for a long time; others have not. Riding this out at home is the best choice for most of us, but it can be a lonely choice. For most of us, our doctors do not call to check in. Maybe they assume we’ve recovered. Maybe they are busy with sicker patients. Maybe they simply don’t feel that they have anything to offer. My doctor has repeatedly told me that I need a chest x-ray, a heart ultrasound, blood work, and a handful of other tests, but since his office is closed and I’m not in urgent need of treatment, I’m waiting it out. To access such testing, I would have to go to the ER.
That question — whether or not to go to the ER — is likely to come up for you. It may be a decision that you grapple with over and over and over. I’ve been to the ER once during all of this. Some members of my groups have been three or four times. Your doctor can offer guidelines, but there is no tidy rubric for making decisions about when to go in and when to ride it out at home. That’s scary frustrating. I get it.
7) Do the obvious things, and do them well. Hydrate, hydrate, hydrate, and be sure to include electrolytes. Coconut water is an especially good choice, but if you’re the Gatorade type, have at it. Eat the rainbow (if you can eat). And rest, rest, rest. I’ll repeat that last line for emphasis: REST, REST, REST.
8) Use all the tools! The pulse oximeter that a family member dropped off on my front porch became my best friend. I always felt short of breath — I still do much of the time — and being able to check to ensure that I was getting enough oxygen into my bloodstream pulled me back from the edge of panic so many times. If you can soothe the anxiety that you will naturally feel, it will make breathing easier. And if you do need emergency oxygen, a pulse oximeter will help you to pick up on that. Pro tip: if you feel short of breath or your oxygen level has dropped, spend some time lying on your stomach. I’ve watched the effects of this simple practice on my pulse oximetry readings and felt the effects in my body. Other tools that you might find useful include a thermometer (duh), blood pressure monitor, an inhaler (this gets mentioned repeatedly in the support group), and a humidifier (another popular pick).
9) The grass is greener outside. Time spent in nature heals; it decreases our stress hormones, improves mood, decreases anxiety, and boosts immune function. You need that stuff right now! If you are well enough to go outside and don’t pose a risk to others by doing so, lie down on a blanket in your yard or sit with your feet in the grass. I’m not a sunbather in my normal life; I’m always on the move, always outside, and usually sport an epic farmer tan. With the warming weather and my weakened body, though, lying bikini-clad on my stomach in the backyard, soaking up vitamin D has become my favorite and most restorative pastime. Other suggestions for quality time with Mother Nature: Hug a tree. Tell your sob story to a flower. Listen to the birds. As you begin to feel better, take a very short, very slow walk.
If you aren’t well enough to step outside or don’t have the space to safely do so, open your curtains and take the time to gaze at the sky or the treetops or whatever bits of the natural world you can see. Open your window to enjoy fresh air and, if you are lucky, birdsong. No birds in your neighborhood? Try playing a track of birdsong from YouTube or a white noise app. No windows? Pull up pictures of natural scenes on your phone or laptop and give them a few minutes of your full attention. Kiss a houseplant, and consider a vitamin D supplement.
10) Get support! Trees and flowers are awesome, but we need people, too. We need people who get us. You are probably going to feel scared, isolated, confused, and anxious during this illness. As your symptoms abate, you might find yourself feeling inexplicably depressed or crabby. You might have nightmares. Ask for help from friends and family! Some of them will be amazing. Unfortunately, some of them won’t be because, you know, they are human and stuff. They probably haven’t been through this yet and don’t understand what it’s like for you. They may be scared for you or for themselves and prefer skepticism or denial to a confrontation with their own fears. You are especially likely to be met with such skepticism, denial, or dismissiveness if you do not have a positive test result to confirm your diagnosis. I’ve experienced that first hand. In that case, reach beyond your usual circle of support. I’ve joined an excellent support group set up by Body Politic, as well as the ‘Coronavirus Survivors’ Facebook group. These groups and regular phone calls with my angel sister have kept me sane (or close to it).
11) Find something to feel grateful for. I’ll admit it: I’m a total Pollyanna. I can play the glad game anytime and anywhere. Being sick for weeks on end does make it harder than usual. But as Benedictine monk David Steindl-Rast reminds us, even though we can’t be grateful for everything, we can be grateful in every moment. If you are well enough to read this article, then there is still more that is right in your body than wrong.
Things I’ve felt grateful for in the course of my illness: that my kids are healthy, for cherry blossoms, the support of loved ones, audiobooks, an insanely comfortable TempurPedic mattress, rain pattering against my window, and the ability to walk. If you can sit up, try writing in a gratitude journal. Or just take a few mindful breaths and notice something positive. You don’t have to do it all day. It would be very dull to have one emotion all day long. So give yourself time to feel miserable and afraid, but throw a little gratitude in the mix to keep things interesting and to keep the negative emotions from overwhelming you.
I’m grateful for this too: the fact that I found genuine gratitude on the lowest and scariest days of this illness gives me confidence that the path ahead of me includes joy, however long recovery might take.
12) Relaaaax! It’s natural to feel stressed and anxious. Let’s not layer on more stress or anxiety by feeling anxious about our stress and stressed about our anxiety. Your stress and anxiety are normal. Accept them, and they will lessen. Fight them, and they will grow.
You can accept your anxiety and still take simple steps to buffer yourself. Notice what triggers you. Some of it — shortness of breath, say — you can’t eliminate. But you can choose to spend less time reading the news (or no time at all). You can stop obsessively googling your symptoms. You can decide to take a break from righting all the wrongs on Facebook. You don’t have to accept every phone call or respond to every text message. It is not your job to manage your mother or brother or spouse’s anxiety about your condition.
Figure out what relaxes you and allows you to feel positively connected with the outside world. Maybe talking with a particular friend or family member has that effect. Maybe progressive relaxation is your jam. Other things you might try: listen to soothing music, sip some turmeric tea, try a guided meditation, watch a feel-good movie, count your exhalations, or listen to an uplifting audiobook.
I hope you never need the information I’ve offered. I hope that you stay well or recover quickly and effortlessly. If you aren’t that lucky, know that you are not alone. That realization has been another silver lining for me. In the earlier weeks of my illness, I felt very alone. Since then, I’ve connected with people, helped people, and been helped by people who would never have crossed my path but for this roller coaster virus. I’d be delighted for you to become one of them! Reach out and tell me about your journey!
The above article is an update and adaptation of an earlier article by the same author, published on Elephant Journal. Read the earlier version here, or check out another article about the author’s experiences with covid-19 here.