In part one, we were talking about why the night time is sucktastic for people who are chronically ill in ways you can’t quickly observe, also known as spoonies. We return to that hellish landscape below. 

Why am I constantly tempering temper tantrums late at night?

Usually small things at that hour.

Quite often outrage at an injustice I’ve read about, which can be helpful – I may write some of my best work when I’m upset, though it takes more editing later on.

Or it could be blind and foolish fury at one of the kids for not just misbehaving at a time when they should be asleep, but lying about something stupid on top of that.

Usually something that I can prove they’re lying about, thus wasting my time and a spoon on a- dealing with the situation and b- orchestrating some corner-time punishment for being a stinky liar pants.

And yes, it’s stupid to be that angry – they’re kids. So I do my best to shield it from them so that they’ll be able to learn whatever they’re supposed to learn.

But when it’s at night, it’s a much harder job. I often have to choose between letting out some of that anger by raising my voice or use a spoon suppressing. I can’t always decide in time.

Once you’ve spend all or most of your spoons, one of the things it’s harder to get a grip on is having and expressing emotions that are proportionate to situations that arise.

Most of the time I can catch myself and not express the full breadth of this blind anger, like I do with any emotion any time of the day.

But having the underlying emotions at full strength, and the self control not to show them cost plenty.

Where that potential upside comes in is that anger blocks a lot, which at the time seems pretty great. It might block pain for a few minutes- I could get an extra bathroom trip out of it.

But the process of becoming, dealing with and most of the time hiding part or all of that anger is exhausting, as are the physical effects.

So it may give me an extra spoon, but it costs too.

Je suis fatiguée.

As I’ve said many times, being a spoonie is like being an iPhone on maximum brightness with 9% power left and no charger in sight, knowing you have three things to do.

(Yes, specifically an iPhone because until the 7, all the iPhones my household ever owned were shit on battery life, though marvelous in many other ways. Since 2010, I’ve always had both an iPhone and an Android, for testing and such. So please miss with all the tired arguments that are only making Samsung and Apple richer.)

However it is that I get spoonie-exhausted, if my “existence cutlery” is depleted, I’m in negative energy, that is to stay, below base level of even the half-spoon of sustenance.

Being out of existence cutlery? Real shit show.

Have you ever run out of charge when you had to make an important phone call?

You know that feeling you have when it cuts off?

I am painfully familiar with that feeling. It’s called spoonie living. You’re constantly praying that your low battery will be able to do something you’re pretty sure only plugged in cell phones do well.

And if you’re lucky you can do it, barely, probably not well. Your whole life becomes that pleasepleasepleasework feeling. And about 30% of the time – if you’re lucky and have done absolutely everything right- you will fail.

The battery will die despite your best efforts. And you can’t even.

While I’m recharging, I can’t be asleep- it takes spoons to fall asleep. That sounds like a wild thing to say. You’d think that when you get to the bottom of exhaustion, sleep follows.

If it does, you’re a different type of exhausted.

You are healthy version of exhausted.

Spoonie exhaustion is medical-grade fatigue. Because I’m chronically ill, I have to be able to move into a comfortable position, or I may not even fall asleep, let alone stay asleep.

And it takes twenty minutes to find one.

If I’m in negative spoons I can’t.

Since I have night sweats again because of the Lymphoma, which smells sour and is much more pungent than regular sweat, I must change into different clothes to go to sleep. Nighties are a must.

Especially since I have no idea when I’ll have the spoons for laundry again.

If I’m in negative spoons? I can’t.

My mind is a complicit in the sleep-lack conspiracy too now.

I will have racing or repeating thoughts if i don’t leave the TV or an ITumes playlist on as I’m falling asleep when spoons are low.

When spoons are down to existence-level, I can’t control these thoughts, or sadness about my condition or other types of emotional turmoil about my pain. I don’t have the strength, literally.

If I’m negative spoons? I can’t even. And I need to even!

So that’s kind of where I am nowm spoonie-wise.

In an uncomfortable position, waiting to have the energy to do my night routine so I can actually fall asleep.

Even on a good night, there’s an annoying cycle.

• do one pre-bedtime activity,
• rest for at least as long as it took,
• do another activity,
• rest again.

I even try to do them in a specific order to conserve energy, with anything that involves my brain last and closest to my bed.

So if brain fog, one of my fun symptoms left over from cancer treatment, kicks in and I leave something in the restroom, I actually have to rest before I can get up and go get it.

Luckily that’s only true that time of day.

As I’ve said my theory is that we who have chronic illnesses are invisible and so our needs aren’t considered in things like whether there should be single or universal payer health care or whether pre-existing conditions should preclude someone from being allowed to buy health care.

There are times when I’d love for this not to be a political thing- ideally my basic dignity and humanity would not be something that one third of the voting public either thinks I shouldn’t have or refuses to take into consideration.

Since it is, that forces me to be on the side of the people who care and protect it.

Which seems politically stupid to me- both sides caring about basic human rights would give people the opportunity to chose based on other information.

And that one way we can become visible is by sharing our stories.

Exhausting though it may be at times.

So thank you again for reading my story today. Maybe you’ll come across someone who thinks they have to hide their illness, and see the signs through them sharing frustration about getting to bed, in passing.

Or maybe when you’re building the world, through websites or apps or physical structures, you’ll think of one of our frustrations, and build a solution into your creation to make the world better for everyone.

Or maybe you’ll be one of those people who helps the world understand by sharing yours – if that happens, please reply to one of these so I can start reading what it’s like to be you.