The Most Spontaneous Thing I Did Today Was Have a Nap

The quiet loss of spontaneity when you live with chronic illness.

The most spontaneous thing I did today was have a nap.

I hadn't planned it.

It wasn't in the diary.

There was no careful preparation involved.

I simply thought, I'm tired, and went to sleep.

Wild.

There was a time when spontaneity meant something rather different.

It meant deciding to go somewhere at the last minute.

Staying out longer than expected.

Accepting an invitation without first mentally consulting an enormous invisible spreadsheet entitled:

“But what will this cost me afterwards?”

Chronic illness changes that.

Not necessarily all at once.

Nobody sits you down after a diagnosis and explains that alongside the symptoms, appointments, medication and treatments, you may also gradually lose something you hadn't previously realised was precious: the ability to just do things.

“Do you want to come?”

It's such a simple question.

For many people, the calculation that follows is equally simple.

Do I want to go?

Yes.

Brilliant.

See you there.

When you live with chronic illness, there can be rather more questions.

How am I feeling today?

How far away is it?

How am I getting there?

How much walking is involved?

Where can I sit down?

Where is the nearest toilet?

Do I need to take anything with me?

Have I eaten?

Have I got enough medication?

What did I do yesterday?

What am I doing tomorrow?

How long will I need to recover afterwards?

And the particularly unhelpful one:

How am I going to feel by the time I actually get there?

That last question is difficult because there is often no answer.

You can plan around the body you have at 10am.

Unfortunately, the body arriving at 4pm may have other ideas.

Spontaneity requires a certain amount of trust.

I don't think I appreciated this before becoming unwell.

Being spontaneous requires you to trust your body.

Not completely.

Nobody has absolute control over what their body is going to do.

But most of us move through ordinary life with a quiet assumption that if we decide to do something, our body will probably cooperate sufficiently for us to do it.

Chronic illness can disturb that relationship.

Suddenly your body becomes another participant in every decision.

And unfortunately, it has veto power.

You might desperately want to go somewhere.

Your body says no.

You might make plans weeks in advance.

Your body says no.

You might wake up feeling relatively well and think:

Excellent. Today might be a good day.

Three hours later:

Absolutely not.

There is something strangely unsettling about no longer being able to reliably predict yourself.

Everything becomes logistics.

Chronic illness can turn extraordinarily ordinary activities into military operations.

A day out isn't necessarily just a day out.

It can involve medication, accessibility, transport, food, toilets, fatigue, pain, mobility, contingency plans and the possibility that you may need to leave early.

Travel can require even more preparation.

Socialising can require preparation.

Work can require preparation.

Sometimes simply getting through an unusually busy week requires strategically deciding where you're going to spend the energy you have available.

And eventually you become very good at it.

You plan.

You anticipate.

You carry things other people don't have to think about.

You know where the toilets are.

You know where you can sit.

You know which plans can be abandoned.

You know what absolutely cannot be forgotten.

From the outside, that can look like being extremely organised.

Sometimes it is.

Sometimes it's what happens when being unprepared has consequences.

And then there is the invisible planning.

This is perhaps the strangest part.

Other people don't necessarily see any of it.

They see you arrive.

They don't see the calculations that happened beforehand.

They don't see that you deliberately did very little that morning because you knew you were going out that evening.

They don't see the things you declined earlier in the week.

They don't see you calculating whether staying another hour is worth what tomorrow might feel like.

They don't see the recovery afterwards.

They just see: You came.

And that's one of the peculiar things about chronic illness.

Sometimes an apparently ordinary activity represents an extraordinary amount of work.

"But you were fine yesterday."

Ah.

The sentence every chronically ill person adores.

Being able to do something yesterday does not necessarily mean you can do it today.

And being able to do something doesn't necessarily mean doing it was consequence-free.

That distinction matters.

There are things people with chronic illness can physically do.

The more useful question can sometimes be:

What happens if they do them?

Can I attend something for two hours?

Possibly.

Can I attend it, travel home, make dinner, concentrate afterwards and function normally the following morning?

That may be an entirely different question.

Capacity isn't always about whether an activity is possible.

Sometimes it's about the price the body charges afterwards.

The strange grief of saying no

There is an obvious frustration in having to cancel something you didn't want to cancel.

But there is another loss that is harder to describe.

Eventually, sometimes, you stop making the plan in the first place.

You learn what your body is likely to tolerate.

You know that two commitments on consecutive days might be ambitious.

You know an evening event could wipe out the following morning.

You know travelling somewhere might use most of what you have available before the actual event has even begun.

So you become sensible.

Responsible.

Realistic.

And occasionally terribly boring.

Not because you've lost your curiosity.

Not because you don't want to participate.

But because chronic illness has taught you that “I'll figure it out” can have consequences.

There is grief in that.

Not necessarily dramatic grief.

Nobody sends flowers because you can no longer casually decide to go out for dinner.

But it is still the loss of something.

A little freedom.

A little independence.

A little version of yourself who didn't need to negotiate with their body before saying yes.

Sometimes I miss being irresponsible.

Not actually irresponsible. I promise I'm not going to break the law!

I'm not yearning to wake up in Ibiza having accidentally bought a speedboat.

I mean the tiny irresponsibilities healthy bodies allow.

Staying somewhere later than planned.

Going out despite having an early morning.

Deciding at lunchtime to spend the afternoon somewhere completely different.

Taking the long way home because something looks interesting.

Saying, "Why not?" without immediately thinking of seventeen reasons why perhaps not.

There is a wonderful carelessness to ordinary health.

You don't appreciate it because you're not supposed to.

That's the point.

But spontaneity doesn't disappear completely.

It changes shape.

Sometimes spontaneity now means accepting an invitation because today happens to be a good day.

Sometimes it's going somewhere for an hour instead of deciding there's no point unless you can manage the whole afternoon.

Sometimes it's changing the plan rather than cancelling it.

Sometimes it's ordering something nice to eat.

Sitting outside.

Calling somebody.

Starting something creative at an absurd hour because, for once, your brain has decided to cooperate.

And yes.

Sometimes the most spontaneous thing you do all day is have a nap.

That isn't the version of spontaneity I would have chosen.

But perhaps part of living with a body that has changed is learning that a smaller life in one particular moment doesn't have to mean a smaller life altogether.

You find different ways of saying yes.

Please keep inviting us.

This might be the most important thing I can say to people who love somebody with chronic illness.

Please keep asking.

Even if we've said no before.

Even if we've cancelled.

Even if you suspect the answer might be no again.

There is a difference between choosing not to attend and quietly discovering that people have stopped giving you the choice.

An invitation says:

We still imagine you here.

And that matters.

Make it easy for somebody to say no.

Make it equally easy for them to say yes.

Tell them they can leave early.

Tell them there will be somewhere to sit.

Tell them changing their mind isn't going to ruin everything.

And please don't make somebody spend half of their limited energy apologising for the fact that they have limited energy.

Sometimes flexibility is one of the kindest accommodations there is.

I still want to say yes.

That's the thing I wish people understood.

Chronic illness may change what somebody can do.

It doesn't necessarily change what they want to do.

The person who says: “I don't think I can manage it.” may desperately wish they could.

The person who leaves early may have wanted to stay until the end.

The person who needs a day to recover may still think the thing they did was completely worth it.

The person meticulously planning every detail may once have been somebody who barely planned anything at all.

There is still a spontaneous person in there.

They just have an extraordinarily bureaucratic body.

So these days, spontaneity looks a little different to me.

It is more calculated.

More precious.

And considerably more likely to involve comfortable clothing.

But every now and then, I still get to say:

“Why not?”

And on the days when I can't?

Well.

Apparently I can always spontaneously have a nap.

Oui. Together, we can.