Post-infection conditions and neurological issues can leave you feeling like a shell of your former self. Even when you are technically “functioning,” your world becomes smaller. To get through the day, people often have to make difficult decisions about where to spend their limited energy. When every task has a cost, priorities narrow. A life that once held a balance of work, relationships, hobbies, and play can quickly shrink to the basics — work, dinner, sleep. And when symptoms are particularly acute, even that can reduce further to eating and resting.

In that process, everyone ends up giving up something that once mattered.

For Katie, before her recovery journey began, one of the first things to quietly disappear was the family kitchen dance party.

No more cheesy pop songs or 80s classics playing through the speakers while making dinner or putting away dishes. No more spontaneous moments where someone would grab a spoon as a microphone or spin around the kitchen while waiting for the kettle to boil. No belly laughs shared with her husband and daughter. No small, silly family memories being made in the middle of an ordinary weekday evening.

It is a small thing, on the surface. But it embodies so much about joy, spontaneity, and energy - all of which had disappeared while she was unwell.

March is Long COVID Awareness Month. The conversations within the Long COVID community, and the awareness they have been able to raise, have been powerful to see. They are full of energy, passion, humanity, and hope.

Alongside that, however, sits a more sobering reality: millions of people are still getting through their days while managing life-altering symptoms. Often just managing. Sometimes barely managing.

Those symptoms mean people miss out on time with friends and family. They miss opportunities to do the things they once loved. They miss the chance to build careers and life paths they had imagined for themselves.

Facing that reality every day is difficult.

Beyond the day-to-day challenges, there is another layer that can be even harder to confront. The sense that these symptoms are not only affecting the present moment, but also reshaping the future. The plans people once held for their lives - the experiences they expected to have, the paths they hoped to follow - can suddenly feel uncertain or out of reach.

It can feel like a double loss. A loss of the present, and a loss of the future that once seemed possible.

For Katie, this showed up as hundreds of missed activities and opportunities, both big and small. But sometimes the smaller examples tell the story most clearly.

The goofy family kitchen dance party became one of those examples.

At the time, even basic kitchen tasks required extreme mental and physical concentration. Mental focus was needed simply to remember the sequence of steps involved in preparing a meal, or which cupboard held the dishes needed for dinner. Things that had once been automatic now required deliberate thought.

On top of that came the physical challenge of coordinating body and brain - something that had once been effortless but suddenly felt incredibly difficult. At times, picking up a glass without spilling something required complete concentration.

When all of your attention is devoted to completing basic tasks, there is little room left for anything else. Conversations become difficult. Multitasking disappears. And the idea of playing music and dancing around the kitchen while cooking dinner becomes impossible.

Of course, the ability to have a dance party is not something that is critical to survival. But it represents something much larger.

It represents spontaneity. It represents ease. It represents the ability to move through the day without constant effort. It represents the capacity to share joy with the people you love.

Now that Katie has recovered, the kitchen dance party has returned - and in many ways, it has become a small celebration of what has been regained.

At least once or twice a week, someone in the family will hear a song that needs to be shared. A track will come up on a playlist, someone will start moving their feet, and before long there are fake microphones, questionable dance moves, and plenty of laughter filling the kitchen.

It is cheesy. It is frivolous. And it is wonderful.

These are the kinds of things Long COVID takes away from people. Small moments that may not seem important from the outside, but that hold so much meaning in everyday life.

They are losses in themselves - but they also represent something bigger. A loss of connection. A loss of joy. A loss of spontaneity.

If you are living with Long COVID or another post-infection condition, you may recognize this feeling. You may already know what it is like to look at your life and realize that parts of it have quietly disappeared.

If that is where you are right now, it can be deeply frustrating - even heartbreaking.

One thing many people discover along the way is that recovery is not always about dramatic breakthroughs. More often, it comes through small shifts that help the body gradually move back toward regulation and resilience. Sometimes those shifts begin subtly. 

When they begin to take hold, they create space for the small moments to return - the ones that make life feel like life again. Sometimes, that return starts with something as simple as a song playing in the kitchen.

Warmly,
Katie 

Related Blog posts: 

The Tyranny of Stairs

Living With Someone Who Has Long COVID  

What If Recovery Was Always Within Your Reach?  

Gaining Abilities and Maintaining Them to Manage Long Covid Symptoms