My Body Has Revised the Terms and Conditions

There was once a donkey who carried bags of salt for a merchant.

Every day, the merchant loaded the salt across his back, and every day the donkey carried it along the same road and through the same stream.

One day, while crossing the water, the donkey slipped. Down he went.

By the time he struggled back onto his feet, much of the salt had dissolved. His burden was lighter. Well.

The donkey was no fool.

The next time they reached the stream, he remembered exactly what had happened. So he fell again.

Unfortunately, the merchant had changed the cargo.

This time the donkey was carrying sponges. The sponges soaked up the water.

And the donkey staggered out of the stream carrying far more weight than he had carried into it.

Same donkey. Same stream. Same maneuver. Entirely different Tuesday.

Yesterday’s Rule

One of the more irritating features of living with fibromyalgia is that the body occasionally allows you to believe you have figured something out.

You walk around the grocery store and come home tired, but functional.

Excellent. Apparently we can grocery shop now.

You make dinner. You wash your hair. You spend an afternoon with somebody. You walk farther than usual.

Perhaps you even have one of those suspiciously pleasant days when the body behaves almost normally and you begin making plans like some reckless fool who has never met you before.

Then you try the same thing again. And collapse.

This is where the interrogation begins. Sometimes from other people. Sometimes from ourselves.

But you did it last Tuesday.

Yes. I did. Apparently last Tuesday I was carrying salt.

Then Someone Loaded the Sponges

Human beings like consistency because consistency helps us predict things. If I can lift this today, I should be able to lift it tomorrow.

If walking around a store requires this much energy, then presumably walking around the same store next week should require approximately the same amount.

This is perfectly sensible thinking when applied to lamps, refrigerators and reasonably maintained farm equipment.

Bodies are less cooperative. Bodies arrive at an activity carrying everything that happened before the activity began.

How did you sleep? What did you do yesterday? How much pain were you already managing when you got out of bed?

Is it hot? Cold? Noisy? Did you have to concentrate for three hours?

Have you been sitting too long? Standing too long?

Doing too much? Doing too little?

Did some mysterious committee inside your nervous system hold a meeting at 3:17 in the morning and decide that shirts are painful today?

We do not always know. That last part matters.

Because when the variables are obvious, people understand them.

Of course you're tired. You didn't sleep. Of course you're sore. You moved furniture.

There is a cause. There is an effect. Everyone may go home satisfied.

Fibromyalgia does not always provide that courtesy. Sometimes the sponges simply appear.

But You Did It Last Tuesday

This may be one of the most damaging sentences a person with variable chronic illness hears. Not because the words themselves are particularly cruel. Often they aren't intended cruelly at all.

They are evidence being presented. You did this before. Therefore you can do this now. And if you cannot do it now, something requires explanation.

Eventually, we begin presenting the evidence against ourselves.

I went to lunch last week. Why can't I go today?

I cleaned the kitchen yesterday. Why am I exhausted from taking a shower?

I walked that far before. Why am I stopping now?

Maybe I'm becoming lazy. Maybe I'm giving in too easily. Maybe if I pushed harder—

There is a peculiar kind of self-doubt that comes from inhabiting a body that will not reproduce its own results.

If the limitation were exactly the same every day, at least you could draw a line around it. Here is what I can do. Here is what I cannot.

But fluctuating illness keeps moving the line.

Research into the experiences of people with fibromyalgia has found exactly this problem. Patients describe symptoms that vary from day to day, flares that can seem to arrive without an obvious reason, and difficulty predicting how functional they will be.

In other words: The inconsistency isn't evidence that the illness isn't real. The inconsistency is part of the illness.

The Body Is Not Breaking Its Promise

I think this is where we make the mistake. We interpret a good day as a promise.

Look! There she is. The old me. The capable me.

The one who can do things without calculating the distance from the parking lot, the number of chairs in the room and whether tomorrow needs to be sacrificed on the altar of today.

Then the next morning the capable woman has apparently fled the country.

It feels like something has been taken back. But the body never signed that agreement. Yesterday's capacity was information about yesterday. It was not a guarantee.

Studies of fibromyalgia have documented fluctuations in pain, fatigue and functioning both within days and across days. Patients also describe the unpredictability itself as disruptive because it makes planning work, social events and ordinary life difficult.

That uncertainty has consequences beyond pain. You hesitate before accepting invitations. You stop promising things. You begin adding qualifications. I'd love to, if I'm feeling okay. I'll see how I am that morning. Maybe.

It can sound noncommittal to someone whose body generally keeps appointments. It isn't.

You are attempting to negotiate with management. Management has stopped taking calls.

Stop Measuring the Stream

From the outside, people tend to measure the activity. You walked around this store last week. You attended a meeting. You cooked a meal. You spent two hours visiting someone. You took the dog for a walk.

The stream looks exactly the same. But the stream was never the important measurement. The load was.

Two people can perform the same activity at completely different physiological cost. The same person can perform the same activity at completely different cost on two different days.

That distinction matters enormously.

Because otherwise every good day becomes evidence that the bad days are somehow negotiable. They aren't.

A good day does not expose the bad day as fraudulent. A bad day does not erase the good one.

Both happened. Both belonged to the same body.

The donkey did not suddenly become a worse donkey. Someone loaded the sponges.

Revised Terms and Conditions

I would very much like my body to publish its policies in advance. Preferably in large print.

Monday: Walking permitted.

Tuesday: Walking permitted, but stairs will incur additional charges.

Wednesday: All services suspended due to circumstances nobody can adequately explain.

Thursday: Surprise! You feel wonderful. Please do something foolish so we can discuss it Friday.

Unfortunately, that is not how this works. So perhaps the better skill is not predicting perfectly. Perhaps it is believing the body standing in front of us today.

Not the one from last Tuesday. Not the one from twenty years ago. Not even the surprisingly energetic creature who appeared yesterday and started making plans.

This one.

What is she carrying? What does this particular load cost? What can she reasonably do without turning today's accomplishment into tomorrow's punishment?

There will still be mistakes. There will still be days when I think I am carrying salt and discover halfway across the stream that somebody has switched the cargo.

But I am trying to stop prosecuting myself with evidence from another day. Yesterday's capacity is not a contract for today.

Yesterday I was carrying salt. Today I am carrying sponges.

🫏What if the question isn't why I can't do what I did last Tuesday, but what this body needs from me today?