A few months ago I woke up so dizzy that moving my head made me want to throw up. Not a little lightheaded. Not the kind where you stand up too fast and need a second to steady yourself. The room moved when I moved, and eventually I figured out that the only way to make it stop was to lie completely still.

So I stayed in bed.

At first I thought I would sleep for a while and feel better. Then the morning became afternoon. The next morning I was still dizzy. Then another day passed. I could not look at my phone for long. I could not concentrate on television. I could not listen to an audiobook, which is usually my answer for any situation that requires me to stay still. My brain was bored out of its mind while my body demanded that I do absolutely nothing.

By the end of several days, lying still had created a whole new problem. My joints hurt because I had been lying still too much. That is one of the more ridiculous parts of living in a chronically ill body. Sometimes the thing one symptom requires is exactly what another symptom hates.

Meanwhile, life in my house did not stop because I was in bed. My teenager had the toddler much more than she normally would. She and my wife handled dinner together. My wife, Thy, took over the boys’ therapies that week. I lay upstairs knowing everyone was being fed and cared for and still feeling like the worst mother alive.

The guilt told me Rae should not have the toddler this much. Thy should not have to rearrange the boys’ therapies because I could not get out of bed. Dinner should not be their problem. I knew they were capable. I knew everyone was okay. I knew I was too sick to do those things myself.

Guilt is not especially interested in whether it is being reasonable.

I knew the physical therapy maneuvers that could help the vertigo, and I also knew exactly how miserable they could make me. I did them anyway with a trash can beside the bed. Between repetitions, I threw up into it for a solid ten minutes, waited until my stomach settled enough to try again, and then did it all over. It was awful. But after nearly a week of barely being able to move my head without the room spinning, awful felt worth trying.

Eventually, I started improving.

That was a flare day stretched into most of a week.

I think people who do not live with chronic illness sometimes imagine a flare as an especially bad version of being sick. For me, it is more like the systems I already built to make life possible suddenly stop being enough.

I already make choices every day based on what my body can handle. How much walking is involved? How many appointments have we already had this week? If I shower today, do I still have enough energy to clean something afterward? Can I cook dinner if I also take someone to therapy?

Those are not flare-day questions. Those are regular-life questions. A flare is when the choices get smaller.

Sometimes I wake up with a migraine already in full swing and there is no question what kind of day we are having. Other times I start the morning thinking I can probably manage, and then sometime around noon it feels like I have hit a brick wall. My eyelids get heavy. My body feels like somebody added weights to it. I keep trying to accomplish things, but it feels like spinning my wheels in mud.

Then everything starts feeding everything else. Pain makes me tired, and being tired makes the pain harder to tolerate. My stomach decides to join the party. My head starts hurting, whether it becomes a migraine or not, and my brain gets foggy because it is hard to think clearly when my entire body is complaining at me. By the end of the day, I also have to work harder not to snap at the people I love because discomfort eats away at the patience I normally have.

That is when regular life gets rearranged.

If Channing has OT and I cannot safely drive, Thy takes him. His therapist can call me afterward if she needs to go over something because I am still the one who manages most of his care. Dinner might become leftovers. Rae might get cooking directions from me one text message at a time while I am upstairs instead of me standing beside her in the kitchen. A shower may become a washcloth and bath wipes because that is all I have in me.

School changes too. We homeschool four days a week on purpose, and my health is one of the reasons Friday exists. Friday is our margin.

If Tuesday goes sideways because I am sick or because Channing has reached his limit, we do not have to force the rest of an assignment just because the schedule says we should. We can stop. On Friday we catch up. We go back over missed math problems and figure out why they were missed instead of just changing the answers. If something needs another day, there is another day.

That little bit of empty space changed homeschooling for us because our schedule finally started fitting our actual family instead of some imaginary family where nobody gets sick, nobody gets overwhelmed, and every Tuesday goes according to plan.

That same lesson has worked its way into the rest of our house. If everyone ate dinner, dinner was handled. If Thy got Channing to therapy, therapy was handled. If the house is a little messier because I spent the afternoon asleep, the house will survive.

Chronic illness has taught me to be happy with done, even when done is not exactly how I would have done it.

It has also taught me that pushing through is usually a bad bargain. If I keep going after my body has clearly told me it is done, my mood gets harder to control. The pain gets worse. Other symptoms pile on. Recovery takes longer. I am borrowing energy I do not even have yet, and eventually my body makes me pay it back.

I know that now. I still do not always like it.

There are flare days that steal something I was genuinely looking forward to. Those are harder. Missing an ordinary Tuesday at home is one thing. Missing something I wanted to be part of is another.

And sometimes the hardest part is not missing the thing. It is knowing someone else may think I missed it because I did not care.

People are often very understanding of illness when they think illness has an ending. At first they tell me to rest. They forgive the canceled plans and check on me. Then months become years, and eventually some of those invitations stop coming. Other relationships get strained because someone decides that if I really cared, I would find a way to show up.

I did not have one friend who stayed beside me through the entire journey into chronic illness. My wife and my kids did. They are also the people who see what happens before the pictures, after the pictures, and on all the days when there are no pictures at all.

I can almost hear imaginary Janice already.

“But you walked through the mall yesterday.”

Yes, Janice. I did.

“So why do you need the wheelchair today?”

Well, Janice, probably because I walked through the mall yesterday.

That is the part people do not see in a photograph. They see me at the mall with my kids. They do not see that I spent much of the outing sitting somewhere taking pictures while everyone else moved around. They do not see what I skipped earlier in the day to save enough energy to go. They do not see the accommodations that made it possible. And they definitely do not see what happens afterward.

A photo proves that I did something. It does not tell you what it cost me.

I think that trips people up because I actually am happy a lot of the time.

I have lived with chronic illness for more than a decade, and I do not spend every day mourning my old life. I used to. I used to grieve the version of myself who could make plans without mentally calculating the walking distance, whether there would be somewhere to sit, and how long I might need to recover afterward.

I do not do that nearly as much anymore.

There are things I genuinely like about living slower. I notice more. I draw. I paint. I write. I listen to books. I sit outside. I have learned that there are good things about a life that moves at a slower pace.

That does not mean I would not gladly return some of the genetic jackpot I apparently won. There are still days when I get angry. There are still things I want to do and cannot. There are still moments a flare steals from me.

But this is also the best my health has been in years.

My skin is clearer. Botox took me from roughly twenty-five migraines a month to about five over the course of three months. I understand my energy better. I know more about managing my pain. I recognize the warning signs that tell me I am getting close to my limit.

I have said several times this past year that I am probably as close to remission as I realistically expect to get.

And this is what remission looks like for me: clearer skin, far fewer migraines, better pain management, more good days, more creative work, and still some days when my body shuts the whole operation down.

I still flare. I still hit that wall. I still cannot depend on my body enough to work a regular job where someone else decides exactly when I have to be functional. But I can write. I can paint. I can draw. I can create something and put it into the world.

That matters to me more than almost anything.

For a long time, surviving took up nearly all the available room in my life. Having a purpose again that is bigger than simply surviving is probably one of the biggest reasons my life feels like mine again.

That is also why I have become protective of the energy I do have. When my body says stop, I have to listen. Not because I am lazy. Not because I do not care. Not because I have stopped trying. Because I know what happens when I do not.

And when I am flaring, I usually do not need another suggestion.

After more than a decade, I have heard them. Stretch more. Exercise more. Exercise less. Change my diet. Take this supplement. Drink more water. Try pain medication. Pray harder. Try the thing that cured somebody’s cousin.

Please believe me when I say my doctors and I know my body. I have spent years learning it too.

What helps me now is usually much simpler.

Ask me what I need.

Sometimes the answer is an ice pack. Sometimes it is a drink because I hurt too much to get up and get one myself. Sometimes being asked makes me stop long enough to take an internal inventory and realize what my body is asking for.

And sometimes I do not need anything brought to me at all. I need someone to stay nearby. My kids might bring their drawing supplies into the room where I am resting. Somebody might curl up under a blanket and watch a movie with me. They are not curing anything. They are just making sure I am still part of the family while I wait for my body to settle down again.

If you love someone with chronic illness, ask what they need and believe the answer.

We already know when we have canceled. We already know what someone else had to pick up because we could not do it. We already know our bodies make us unreliable in ways we never wanted to be.

You do not have to make us prove it.

Sometimes I really did walk through the mall yesterday.

And sometimes that is exactly why I need the wheelchair today.