Saturday, 25 April 2020

What I wish I had known when I first got COVID-19.



I’m 43 days into my roller-coaster ride of COVID-19 symptoms.

I feel encouraged by the things my body is able to do today that it couldn’t manage a week or two ago.
But the drops, twists, and loops keep coming, keep catching me by surprise.
Yesterday, it was the sudden return of dizziness and a headache.
Today, it is increased shortness of breath (again). Perhaps I am an outlier. Perhaps it is unusual for symptoms to last this long.
Also, perhaps not.
Several days ago, I connected with a COVID-19 support group (more on that later). It turns out I’m not the only one feeling jarred by the relentlessness of this roller coaster. It’s been surprising, 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 30, 40, or even 50 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, diarrhea, vomiting, brain fog, 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 most 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 for COVID-19.
The unfortunate answer is “yes.”
2. Symptoms that sound simple and straightforward on paper might not feel that way. “Headache,” for example, may refer to cranial pressure so intense 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 a couple weeks. And after it leaves, it might stop back in for a surprise visit (this holds true for all of the other symptoms, as well).
3. Your symptoms will change, evolve, ebb, and flow in a way you probably haven’t experienced with any other illness.
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. Two steps forward, one step back. Three steps forward, two steps back.
After six weeks, most of my symptoms have mostly resolved (shortness of breath is still an ongoing challenge), but they pop back up at random or when I overdo it. I’ve hit the comparative sweet spot of six steps forward, one step back. That’s the silver lining to this ebb and flow—for most of us, the good stretches start to get longer, and the bad stretches shrink or become less intense.
4. Decide on day one that you are allowed to be sick for a long time. It would have been nice if I had figured this one out 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, I hope you won’t be sick for long, but 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 not help them because it will set you back. 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*ck 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.
5. Know that if you consult with two doctors, you are likely to get two different sets of information and advice. This doesn’t necessarily mean one of your doctors is no good. Doctors and patients alike are scrambling for information right now, and the data shifts as more people fall ill and more treatments are tested. If you don’t require a ventilator, an ICU bed, or hospitalization, you may feel ignored or discounted by medical professionals. You will almost certainly be unable to access treatment or testing like x-rays and EKGs without a visit to the ER. You may have to grapple with the decision of whether or not to go into the ER. If you are like me, you will grapple with it over and over and over. There is no tidy rubric for making such decisions.
6. Do the obvious things, and do them well. Hydrate, hydrate, hydrate, and be sure to include electrolytes. Coconut water is an especially good choice. Eat the rainbow (if you can eat). And rest, rest, rest.
7. 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. Other tools that you might find useful include a thermometer (duh), a blood pressure monitor, an inhaler (this gets mentioned repeatedly in the support group), and a humidifier (another popular pick).
8. Roll with the punches, err, I mean with the shortness of breath. Seriously, roll over onto your stomach and hang out there. It might sound uncomfortable, especially if you have chest pain, but give tummy time a try. For many people, it helps relieve difficulty breathing.
9. The grass is greener on the other side of your window. 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. Hug a tree. Tell your sob story to a flower. Soak up some vitamin D (a supplement can be helpful here, too, and many doctors are recommending that).
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.
10. Get support! Trees and flowers are awesome, but we need people, too. 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. You might have nightmares. Ask for help from friends and family! The two sources of support that have helped me most are a daily phone call from my angel sister and the fabulous COVID-19 support group I keep bringing up. It was founded by the inspiring and community-minded creators of Body Politic.
You can request to join the group here.
11. Find something to feel grateful for. As the Benedictine monk David Steindl-Rast reminds us, we can’t be grateful for everything, but 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. 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. You’re allowed to feel miserable and afraid and terrified, too. Just throw a little gratitude in the mix here and there to keep things interesting.
If you can practice feeling grateful while being sick and scared, you might just find it easier to drum up a gratitude in the middle of some future traffic jam or board meeting or toddler meltdown.
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. That said, calming your emotions will help with many of your symptoms. 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 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. On the other hand, talking with friends and family can be a great morale booster when you feel up to doing it. Here are a few other things you might try to bring a little relaxation into all this uncertainty: listen to soothing music, try progressive relaxation or 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’re not alone.
Please share your experiences, insights, and questions here in the comments, or come join me in the support group. Let’s be in this together!
~
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Lisa Jensen Thomas  |  24 Followers

AUTHOR: LISA JENSEN THOMAS
IMAGE: BENJAMIN COMBS / UNSPLASH

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