When Ordinary Things Cost Too Much

Long COVID can make ordinary things require far more from your body than they used to. And knowing that doesn't always make it easier to let them go.

You ate. You rested. You’re drinking water. Maybe you’ve added electrolytes, increased your protein, cut back on sugar or tried one of the dozen other things people suggest when your body seems unable to produce enough energy.

And still, ordinary life costs too much.

A shower costs too much. Standing in the kitchen costs too much. Getting dressed, making breakfast and getting out the door can use an amount of energy that bears very little relationship to what you actually did.

For a long time, I thought about energy the way most of us do: if the body doesn’t have enough, give it more fuel. Food. Rest. Sleep. Water. Maybe coffee when you need to get moving. All of those things can matter, but there’s another side of the energy equation that’s much easier to miss:

How much is your body spending just to keep you steady?

Before I got sick, I could get up, make coffee, go to the gym, take a shower and get on with my day without wondering what my blood pressure was doing when I stood up or where my blood was going after I ate. Those weren’t physiological events to me. They were Tuesday.

But underneath that completely unremarkable Tuesday, my body was doing an extraordinary amount of work. Every time I stood up, it adjusted my circulation. When I ate, it redirected blood toward digestion and compensated elsewhere. It managed changes in temperature, fluid balance, heart rate, blood pressure and activity without requiring me to know any of it was happening.

The healthy body makes an astonishing amount of regulation feel like nothing.

And that gives us another way to think about what happens when ordinary things suddenly stop feeling like nothing.

Your Body Has Been Making Thousands of Adjustments Without Telling You

Your autonomic nervous system manages a huge amount of what keeps you functioning without your conscious involvement.

• Stand up, and gravity pulls blood toward your lower body. Your system responds quickly enough to keep adequate blood reaching your brain.

• Eat, and more blood is directed toward your digestive system. Again, your body adjusts.

• Walk into a hot shower and your blood vessels respond to the heat.

• Become dehydrated and your body has another set of adjustments to make.

• Start walking around, rush up the stairs or carry a laundry basket and demand changes again.

Normally, you don’t experience each of these adjustments as a separate event. You experience a morning.

That’s part of what makes this so hard. As I’m sure you know by now, many people with Long COVID develop dysautonomia, including POTS. But the boots-on-the-ground reality is that when your autonomic nervous system isn’t regulating these changes as easily as it used to, all kinds of super-ordinary things can start requiring a lot more work.

And eating—the process of getting fuel into your system—can become part of that equation. Digestion increases blood flow to the gut, and research in people with POTS has shown that a substantial glucose load can increase heart rate and reduce the amount of blood pumped with each heartbeat while upright. In other words, giving the body fuel doesn’t automatically make the body’s immediate job easier.

That complicates the usual advice to someone who feels depleted, because if you’re exhausted, the obvious question is: What can I give my body to create more energy?

But there may be another useful question sitting beside it: What is my body working so hard to manage?

Maybe You Haven’t Become Fragile

One of the crueler things about prolonged illness is how ridiculous your limitations can begin to feel. You didn’t climb a mountain, you took a shower. Maybe you also made breakfast. You stood in the kitchen talking to your daughter. You got dressed and drove to an appointment.

And yet your body is acting like you ran a marathon.

From the outside, it can look wildly disproportionate. Eventually it can feel that way from the inside too. You start measuring what you can do now against what it used to cost you and wondering how your body could possibly have become this fragile.

But the visible activity isn’t necessarily the whole workload.

If standing requires more cardiovascular compensation than it once did, standing isn’t the same event it used to be. If heat makes maintaining circulation harder, the shower isn’t just washing your hair. And if digestion creates a meaningful redistribution of blood that your body has difficulty compensating for, breakfast isn’t simply calories coming in.

The activity hasn’t changed. The amount of work required to keep you functioning through it may have.

That’s a very different picture from a body that has simply become inexplicably weak.

The Unending Cost-to-Benefit Ratio

You’ve been doing this so long, you already know exactly which parts of your day cost too much.

You know what that shower will take out of you. You may even know what would make it easier today: Don’t wash your hair. Sit down. Skip the shower altogether and try again tomorrow.

Knowing isn’t necessarily the hard part.

The hard part can be letting yourself off the hook.

Because when illness has already asked you to give up so much, doing less doesn’t automatically feel good. Sometimes it feels like losing one more small piece of the person you used to be.

And maybe the shower is just a small thing. But there have been so many small things.

Things you used to do without deciding whether you could afford them. Things that were simply woven into being a person with a life. You didn’t know they mattered until you had to start choosing between them.

There is a level of unfairness there that still—15 years later—brings up a white-hot rage in me. 10 years of Lyme disease has left me with some scars. So, yeah. I know how real this is.

I don’t want to hurry you past it.

I don’t want to tell you that the healthier choice is to accept your limitations, or that you’ll feel better if you stop fighting what is. Sometimes you’re fighting because you loved your life. Because you miss yourself. Because there are things you still desperately want to be able to do without thinking about what they will cost.

Of course you don’t want to give up the shower too.

And maybe today you take the damned, knowing what it will cost, because some part of you needs to still be the woman who takes a shower.

I understand that.

Or maybe you don’t take it. Maybe you sit there knowing it would be kinder to your body to let this one go, and instead of relief you feel the grief of what that means about you.

That deserves some tenderness too.

Because there’s the physical cost of the shower.

And then there’s the quieter cost of living in an ongoing argument between the body you have and the life you still want.

That argument is work too.

If You Want to Stay Here for a Minute

There’s something I’ve taught myself to do when I know what I need but find that some part of me can’t bear to let myself need it.

You don’t have to do this.

You don’t even have to get up.

But if something in what you’ve just read feels painfully familiar, you might want to come back to this when you have a few minutes alone.

Stand in front of a mirror. Not to study yourself. Just to be with the woman who’s there.

Look at her for a moment. You’re not here to make her feel better right now. Just to see her.

Then bring your fingers to the soft area just below your collarbones, near where they meet your breastbone, and begin tapping gently.

Keep looking at yourself. And when you’re ready, say:

I know this is hard.

Just that.

I know this is hard.

Maybe what comes is sadness.

Let it.

You don’t have to turn it into gratitude or acceptance. You don’t have to remind yourself how lucky you are. You don’t have to find the lesson in any of this.

You can simply be sad that this is your life right now.

You can miss the woman who didn’t have to think about showers. You can miss being able to say yes without calculating tomorrow. You can miss the ease of not knowing any of this.

And while you tap, you might say some of that to her.

I know you miss your life.

I know you don’t want to give up one more thing.

I know you’re tired of needing so much care.

And then, if it feels possible:

It’s okay to need less from yourself today.

You don’t have to make that bigger than today.

You don’t have to agree that this is who you are now. You don’t have to promise to accept a smaller life.

Just today.

It’s okay to need less from myself today.

And maybe:

I don’t have to like this to be kind to myself through it.

Then come back, when you’re ready:

I don’t have to like this to be kind to myself through it.

Stay there as long as you want.

There is nothing you need to accomplish.

Maybe you never do this in front of a mirror.

That’s okay.

I think there’s something important in simply noticing how much can be happening around a decision as small as whether to take a shower.

There is what the shower asks of your body, and there is what not taking it can ask of you.

For a long time, you may have treated the first as ridiculous and the second as something you ought to be able to get over. Maybe neither one needs to be argued with quite so much.

Your body is working hard.

And you miss your life.

Both of those things get to be true.

I think sometimes when we’ve been sick for a long time, we become so accustomed to pushing against what is happening that we barely notice we’re doing it anymore. Every day contains these tiny negotiations between what the body seems able to do and what we believe we should still be able to ask of it. Sometimes we push. Sometimes we don’t. Sometimes we make the kinder choice and then punish ourselves for needing it.

That’s a lot to carry.

And I don’t think the answer is to become perfectly accepting of being sick.

I wouldn’t ask that of you.

There are things worth being angry about. There are losses worth grieving. There are parts of your old life you may want back with your whole heart. None of that has to disappear before you can begin being gentler with the person who is living through it.

Maybe that’s what I want to add to the energy equation.

Not another calculation about how much you can do. Not another system for conserving enough of yourself to get through the day. Just the possibility that when your body tells you something costs too much, that can be okay.

And when believing it makes you sad, you might let yourself be sad.

You don’t have to turn the sadness into anything.

You don’t have to transmute it to gold.

You don’t have to learn a damn thing from it.

You can miss what you’ve lost and still care for the person you are right now.

Because underneath all of the questions about blood flow and autonomic regulation and why a shower can flatten you for hours, I think there’s another question worth asking:

What would change if you didn’t have to fight yourself at the same time?

I don’t know the answer to that for you.

Maybe nothing dramatic happens. Maybe tomorrow is another no-shower day. Maybe your body still has an astonishing amount of work to do just to carry you through an ordinary morning.

But perhaps there is a little less war inside.

A little less proving.

A little less of you standing on one side of your own body, demanding that it become different before you’ll agree to be kind to it.

And I don’t think that’s small.

Because the life we’re trying to make room for isn’t waiting somewhere on the other side of perfect health.

It’s this one too.

The one you’re living now, while you heal.

And you deserve to be here with yourself for it.