A day in the life of someone who has a spinal injury

It occurred to me that, while I often mention my injury or identify as disabled, I don’t really talk about what it’s like to live with this injury. I think people get confused, because some days they see me doing things that make it look like I’m a-ok, and the next day I can’t even get out of bed.

The fact is if you don’t have an injury like this, or chronic illness or disability, you don’t know what it’s like, and you really won’t unless something happens to make you end up in that position. Before the spinal injury I was a much different person. I was suffering from various chronic illnesses, some of which I’m not even sure of the name, but they did not take as great a toll on my health and wellbeing as the injury did. Before the spinal injury I could not have ever conceived of what life would be like right now.

But I can still try and shed some light on what it’s like. For me, at least — I don’t claim to speak for anyone else who may have a similar injury or situation, and I certainly don’t claim to speak for people who are disabled or chronically ill in ways much different than I am. I’m only speaking for myself, and I hope it helps explain things to people who don’t live this every day.

Ok. So, every day I start out with a pool of units of energy — I refer to them as spoons, and so do many other chronically ill people. (That link goes to the article that started the use of the “spoons” terminology.) I’ve personally extended the spoon metaphor to include forks (mental health energy) and knives (social energy), but as this post focuses on my physical energy I’m only going to be talking about my spoon supply and demand.

My Oma's spoon collection. More spoons than I get in a regular day.
My Oma’s spoon collection. More spoons than I get in a regular day.

On a Perfect Day, I have about 100 spoons. Please note, perfect days never happen. I’m only including them as reference. A perfect day means I had a perfect night’s sleep (no nightmares, didn’t wake up during the night, slept in a perfect position), woke up in no pain, am full of energy, didn’t borrow against spoons for the past week, and feel only minimal pain for the rest of the day. The first two things never happen. The second two happen, but only occasionally.

More likely than a Perfect Day is a Good Day. That means I had a good night’s sleep (minimal nightmares, only woke up a few times, slept more or less in the right position that doesn’t exacerbate the pain), woke up with minimal pain, had a pretty good amount of energy, didn’t borrow against spoons for the past few days, and felt minimal to moderate pain for the rest of the day. A Good Day gives me about 80 spoons.

The days I have most are OK Days, and especially so now that I’m recovering from a broken leg (which has made my back worse, as it’s been overcompensating for the lack of left leg support). Ok night’s sleep — moderate to heavy nightmares, woke up several times, didn’t sleep in good positions — wake up in moderate pain, have minimal energy, borrowed against spoons minimally to moderately for the past few days, and felt moderate pain for the rest of the day. OK Days yield a pool of 55-75 spoons.

Bad Days are the worst, and they happen more often than Good Days. I have a shitty night’s sleep, wake up in a lot of pain, have almost no energy, borrowed against spoons heavily in recent days, and feel a lot of pain all day. Bad Days yield a max of 50 spoons, but that’s a high estimate.

What’s borrowing against spoons? That’s what I do when I’m out of today’s spoons but I must continue to use spoons. I borrow tomorrow’s and sometimes the next day’s, too. I actually borrow a lot — way more than I should. This is why I have so many OK Days and more Bad Days than Good Days. Part of the reason I find myself borrowing so much is because I’m still not mentally adjusted to being sick and tired all the time. I keep signing myself up for things I could have accomplished three years ago but can’t today.

Now. Each activity I do throughout the day takes a certain amount of spoons — a price tag, if you will. But those prices aren’t constant. On a Good Day prices are much lower than on a Bad Day. On a Good Day, loading the dishwasher and starting it might only take me 3 to 5 spoons. On a Bad Day, it might take 10. And it should be noted that, with my leg still healing, the prices have all spiked, no matter what kind of day I’m having.

So, let’s look at Monday, October 13th. Thanksgiving.

Continue reading “A day in the life of someone who has a spinal injury”

Life without spoons is actually okay right now

On Friday, THINGS happened. Some good; some bad. But overall, my life is awesome.

Friday wiped me out.

Overall it was a good day. The positives outweighed the negatives. Or they didn’t, and I’m just in a place in my life where the positives have more of an effect on me than the negatives do. Friday was my first Zoloft day after a week without, because I’d run out of my first month of pills. That may have something to do with it.

But it wiped me out. I slept for twelve hours today. I got nothing done when I did wake up, because I was tired enough to go back to sleep. And I had weird dreams. The only one I really remember in any detail involved my boyfriend driving my car, which would never happen because it’s too small for him. The car was FULL of my stuff, which is basically still true because moving never ends, and we were on the highway and he was bitching about really needing to go to the bathroom. I finally convinced him to pull over so he could relieve himself by the side of the road, and while he did that, some weird dude came up to the car and started trying to open doors to steal my stuff. So I got out of the car and beat him to death with my cane.

And then I woke up and discovered I had to pee. Funny how our brains work.

On Friday, my car broke down, I slipped and fell, torquing my back out of alignment even more, and then twisted my ankle later on in the evening — it still hurts — and in general I was already feeling crappy physically and emotionally, because a). whoever designed the human body so that some humans will have terrible pain and cramps and bloating and general feeling-like-shit once a month or thereabouts and some humans will not is the DEVIL, and b). there will always be people on the internet who will piss me off and/or trigger me.

Nevertheless, I did have a pretty good day on Friday, despite all that. I saw the 200th show put on by Screaming Chickens Theatrical Society, which was a Taboo Revue — a night of burlesque. There were a few things in the show that really bugged me (a sideshow portion that involved something that’s probably really not good for other former cutters to watch, and one of the new dancers has a name that includes an anti-trans* slur that’s also been reclaimed by many trans* people — but I have no idea if he’s trans* or not, so there are some complicated emotions there for me), but overall I had a really good time. I got to wear my fancy gold dress, and some fancy gold makeup. Any day I can do that is a good day.

I also sold a book! I brought along a copy of Bellica on a whim, thinking I’d maybe show it to one of my burlesque friends. And Star Buxom, who is one of the most amazing burlesque performers I’ve ever seen and a really incredible person all around, bought it! The best part? I got to sign it using her back as a table. I feel like a big-time star author now.

Afterwards, Ogre took me out to dinner at Denny’s. This was probably the best part of the evening, because I got to build my own burger. That’s right — Denny’s now has a build your own burger option. I got to have two types of cheese, bacon, onions, lettuce, and sour cream on a burger. On potato bread. With no tomatoes or pickles. It was magically delicious. They even let me name it, and I told Ogre we have to name one of our kids after this magical, beautiful burger.

I called it Burger of Enrampagement.

I regret nothing.

Anyway.

Today I spent recouping spoons, and I’ll probably spend a good portion of tomorrow doing that too. My fall on Friday hurt me harder than I thought.

But I can’t help but be grateful. Because if the low-points of my life right now are as mild as all this, then you know what? Life is frigging fantastic. And it’s only going to get better.