3:57pm March 26, 2013

Negative spoons

Disclaimer: Any disabled/chronically ill person can have whatever definition of this term. I just know a state that for me screams out to be described by it. So the following all apply only to how I use the term.

Negative spoons is not a bad day.

Negative spoons is not a crash.

Negative spoons is not a flare.

Negative spoons is when:

You are already out of spoons.

Life needs more.

You don’t have any.

Life grabs them from places in you that it shouldn’t.

Sort of like when you are starving, your body takes nutrients from places it shouldn’t.

And just as in starvation it can be life threatening.

Particularly if you are given no opportunity to replenish your spoons.

So that negative spoons happens over and over on top of itself.

Like a giant clusterfuck of taking away spoons that aren’t there.

Because something even many spoonies never run into:

You need spoons to live.

Eventually the spoons start coming out of places that require them for life.

And you start to see death hanging around in the room.

And if you don’t have (or acquire) the spoons to run away from death –

Then you can’t.

I’ve seen death hang around in my room many times in my life.

So have my friends.

It’s almost like a physical presence.

It isn’t here now.

But I don’t want to wake up and see it.

So the fact that I seem to maybe tbe on the edge of negative spoons.

Is a bad thing.

So I need to fight this lung infection.

Which is the current cause of approaching negative spoons.

My friends have been very concerned for me.

Every time I go to the hospital, I get negative spoons.

Every time.

It takes time to dig out from that and be in the zone of safety again.

And in the past few years.

I am not getting quite enough time, before I land in the hospital again.

And outside the hospital I get really sick all the time, from aspirating (related to gastroparesis and/or reflux, as well as bipap use) and getting lung infections (including aspiration pneumonia), which bronchiectasis makes hard to pass.

I have one now.

I am not now yet in a crisis of negative spoons.

But I am in a milder echo of one.

Milder doesn’t mean mild.

And I could go into a real crisis of negative spoons very quickly.

Where it happens one too many times and I can’t get back the spoons I need so my body steals them from systems required to keep me alive.

At which point things get really hairy.

I am not afraid or worrying. They both waste spoons. I can’t afford that.

I’m just describing a state that it’s important to stay away from.

And the fact that I’m damn close to it with this latest string of infections.

If anything, both negative spoons and death strike me as an annoying inconvenience.

And my friends wouldn’t be happy either.

And I need to use any energy I have fighting for whatever it takes to

It’s not yet as bad as it could be.

But by the time death is hanging out in your room…

You don’t wanna wait that far.

So that was my description of what I mean when I say negative spoons.

Not a funny way to say very few spoons, but a way to say that…

…your body is getting its spoons the same way it does in starvation mode.

Which is dangerous and potentially lethal if the spoons don’t replenish fast enough.

Nondisabled people generally have no experience of this state.

Many disabled and chronically ill people have no experience of this state.

Some disabled and chronically ill people, and probably by definition all terminally ill people, at some point experience this state.

The feeling it creates isn’t something I can describe.

But you never forget it.

And you never want to experience it again.

But at some point most people will.

Just hope that your some point isn’t now.

I’ve had it happen many times and got out.

But I know what is happening in my body when it happens.

And that makes me properly respectful of what it means.

I’m not trying to alarm anyone.

I just wanted to define a term I use.

(Despite my hesitance to use spoons in general as a term, because it’s too simple for some things.)

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