from the VAULT
I went to sleep around two in the morning.
I woke up around seven, stiff and exhausted.
I fell back asleep until around eight-thirty, but by then I could not ignore what my body was doing.
I was a pretzel.
Rigor mortis with a pulse.
My legs were tight.
My back was tight.
My shoulders hurt.
Everything felt locked into the shape I had slept in.
The night before had been worth it.
That was the problem.
We had gone to a family birthday party.
There was music.
There was food.
There was laughter.
There were people I love.
I danced with Natalie.
Not for long.
Not the way I used to.
But I danced with my wife.
I stayed later than I normally would.
I spent more energy than I normally would.
I knew there would be a bill.
I just did not know exactly how large it would be until the next morning.
That is one of the strange calculations of living with MS.
You do not only ask:
Can I do this?
You also ask:
What will this cost tomorrow?
Maybe the next day too.
The activity can end at midnight.
The bill can keep arriving for forty-eight hours.
That does not automatically mean the activity was a mistake.
For a long time, I judged effort by what I could do in the moment.
Did I make it through?
Did I stay standing?
Did I avoid falling?
Did I get home?
Now I know that is only half the measurement.
The better question is:
What did it cost the next morning?
That is where the body tells the truth.
The stiffness.
The pain.
The lost sleep.
The walking that suddenly looks worse.
The brain fog.
The hours spent trying to unfold.
The day that becomes smaller because the night before was bigger.
The body keeps the receipt.
But not every bill means I made a bad decision.
Some bills are worth paying.
That Saturday night gave something back.
I was not only managing MS.
I was not only protecting energy.
I was not only planning the exit, watching the clock, checking my leg, or wondering how much I had left.
I was at a party.
I was with family.
I laughed.
I danced.
I felt connected.
For a few hours, the night was bigger than the disease.
That matters.
There is a danger in becoming so good at protecting yourself that you protect yourself out of your own life.
You stop going.
You stop trying.
You stop spending energy on anything that might hurt tomorrow.
You become efficient.
Safe.
Careful.
And absent.
I do not want that either.
Pacing matters.
Limits matter.
Recovery matters.
But preserving energy is not the whole purpose of having energy.
Sometimes I want to spend it.
Not waste it.
Spend it.
On my wife.
On my daughters.
On family.
On laughter.
On a night I will remember.
That does not mean I ignore the cost.
Sunday was hard.
Monday was not great either.
The party did not stop being worth it because recovery took longer than I wanted.
A few days later, Natalie and I went to a taping of The Price Is Right Tonight Canada.
I was already tired.
My AFO dug into my foot.
My body was not giving me much margin.
But the scooter setup worked.
The shorter setup.
The cushion.
The accessibility.
The planning.
All of it gave me enough room to be there.
We laughed all day.
Again, there was a bill.
Again, I would pay it.
That is the difference I am trying to understand.
Some exhaustion comes from spending myself on things that do not matter.
Arguments.
Bad planning.
Unnecessary errands.
Trying to prove I can still do something the old way.
That bill feels terrible because there is nothing meaningful on the other side of it.
Then there are days that cost me because I chose to participate in my own life.
Those bills still hurt.
But they do not feel empty.
A meaningful day can cost two or three recovery days.
That is not fair.
It is also sometimes the deal.
The win is not always avoiding the crash.
Sometimes the win is choosing something worth crashing for.
I do not want every good memory followed by a lecture about pacing.
Sometimes I paced as well as I could.
Sometimes the event itself was simply expensive.
Sometimes being there cost what being there cost.
The goal is not to pretend the bill will not come.
The goal is to know what I am buying.
That Saturday night bought me laughter.
It bought me dancing with Natalie.
It bought me family.
It bought me a version of myself that was not standing outside the evening, watching everybody else live it.
Sunday morning, I paid.
I was stiff.
I was exhausted.
I was a pretzel.
Rigor mortis with a pulse.
But I would not trade the night away to avoid the morning.
The bill was real.
The night was worth it.