People ask me-

Well first, let me deal with the incredulous wonder there. That people have started to ask me questions that are sensitive, probing and meaningful. Which is because of the full body of chronically ill mini-memoirs all over the web.

Thank you, fellow spoonies, for answering the call – mine or anyone’s- to write about your experiences.

People are now asking me, mostly to compare I think, what the hardest part of my day is.

Earlier, I would have said the morning. Oh now naive I was.

Mornings are still tough, mind you.

When the kids are in school, finally falling asleep at 4 am and getting up at 6:30, not being fully sure if you’ll get a nap later and if you do, for how long? It was no joke.

Because right after that, I have at least an hour or two of work to finish, even if I started while they were getting ready.

Trying to get started moving through the house to get to coffee or breakfast isn’t as bad now that there’s a fridge in my room. The Naked juice or protein-rich Greek yogurt I can start on upstairs helps me have the energy to get up and have the rest of my meal and coffee downstairs.

In trying to find out how to have better days, and start sleeping again…. LOLOLOL.

Sorry. The idea of a full night of sleep is hilarious to me!

I was trying to say that in trying to have better days by having better nights, I’ve been noticing how long it takes me to even have a night.

I mean tonight, (last night by the time you read this) the only thing that allowed me to do a lot better and Possibly get to bed at the relatively decent hour of just past midnight?

Will be that I got started getting to bed at 10:30 instead of 12:30.

I took my medicine at 10:30, blew kisses to my niece and gently kicked her out of my room, went to pee out the copious amount of liquid I had to ingest with my medicine and changed the TV to a boring show.

Which is the precursor to no show at all, with the sleep timer on in case I miraculously nod off early.

Which otherwise is the final step before reading and attempting sleep. Which is only the final step IF in fact, I can stay asleep. If not that cycle starts again.

Presently I’m dealing with one of the main monkey wrenches in my plan.

Being too exhausted to sleep.

We spoonies say we’re too tired to sleep, and I think physically abled people don’t understand wtf we’re talking about. Let me run it through.

So at some point in the evening, I will plop down on the bed, finally and totally out of spoons. I literally can’t even.

I can’t even move.

I can’t even think straight.

I can’t even walk to the bathroom unless biology gives me half a spoon from sheer urgent need, or if someone happens to fill me with rage.

The half spoon is actually not a spoon.

It’s what I call my “existence cutlery” -the hidden spoon that keeps me awake and alert, even if bedridden and in pain.

It lets me roll over in bed.

It lets me talk, if I’m having a good day.

It will let me type on my iPad (not my laptop, which I’d have to lift onto the bed and plug in) or use voice recognition to communicate on my phone.

Bathroom trips – any trips- or changing into a different outfit to sleep in kills that half spoon. That half spoon isn’t really good for anything else but basic existence, and if I use it before I get to my bed, whatever task I need it for will be left half-done.

And I will most likely pass out on the floor, which I only had to learn the hard way once.

Existence cutlery benefits

One good thing about existence cutlery is that rest restores it, though unpredictably.

It may take an hour- it’s taken three before. I’ve been stuck half in bed, half out, listening to the tv because processing the image just wasn’t in the cards.

Oh how I miss the luxury of full unlimited spoons….

During that hour?

Heaven help me if I have to pee again- I can’t just get up and go.

I have to lay there until I have the energy to get up and go to the bathroom, I shit thee not. Which is a neat trick because it costs almost the entire existence cutlery collection not to pee right where I am.

Rage is much worse. Though there IS an up side of rage that I’ll come back to shortly.

Why am I enraged? Let’s discuss that next, in part two, coming to you shortly after midnight.