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.
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.
Monday straddled the gray area between OK Day and Good Day, so I started with about 78 spoons. I woke up early, after a pretty good sleep, in only minimal pain. I was planning on sleeping another two hours, but my body needed up then, so I obeyed.
First things first:
- used the bathroom — 3 spoons.
- made myself coffee and breakfast — 5 spoons.
Spoon total: 70
I then decided to take it easy for several hours, because I knew were going to dinner that night and I didn’t want to waste all my energy. I chose an activity that had very minimal spoon usage: playing a video game. So I played Guild Wars 2 for several hours until it was time for me to make the pumpkin pie for dinner that night. I also started this blog post.
While pie was in the oven, I showered and then got partially dressed. I took the pie out of the oven and then put on my make up before I finished getting dressed. I put on my shoes, put aluminum foil over the pie, and we were rushing out the door because we were running late.
- played GW2 — 8 spoons (for the entire time I played — 7:30 am to 1:30pm)
- made pumpkin pie and put it in the oven — 12 spoons
- started blog post — 3 spoons
- showered — 7 spoons
- got partially dressed — 3 spoons
- took pie out of the oven — 4 spoons
- put on make up — 2 spoons
- finished getting dressed — 4 spoons
- put on shoes — 9 spoons
- covered pie and went out the door — 3 spoons
Spoon total: 15
We’re already at 15 spoons and I haven’t even made it to dinner yet. Looks like I’ll need to find something to give me the illusion of more spoons/borrow against tomorrow’s.
Next, came the journey up the stairs and to the car, and then the car ride, where I had to maintain a certain position to keep the pie balanced and myself in minimal pain. We stopped for coffee, which helped give me the illusion of more spoons. When we got to Mr. Katje’s sister’s place, I had to walk with one crutch across the parking lot to their place and then get inside, where I needed to take off my shoes again.
- stairs — 8 spoons
- walk to car + car ride — 7 spoons (we are @ zero spoons now)
- walking into house + removing shoes — 7 spoons (it takes me fewer spoons to remove shoes than to put them on, and the parking lot was fairly flat)
Spoon total: -7
Then there was dinner and being social with family. I spent most of this time doing nothing physically except eating and sitting around. If I were my old normal self I would have offered to help make food and set the table and put away things, but I didn’t, not even to be polite. I didn’t want to be sucked into doing what I knew I physically couldn’t — and I felt like an asshole for not offering.
After dinner, I was in a lot of pain. I sat on the couch and put my leg up to try and ease the pain, and my brother-in-law brought me some Advil. That helped a bit.
When it came time to leave, I had to put on my shoes again (9 spoons) and stand out front while Mr. Katje brought the car around for me (4 spoons). I think I passed out a few times on the ride home — on the plus side, I no longer had to balance pumpkin pie on my lap as it had been devoured, so I didn’t have to focus so much on keeping my body in one position.
We had to stop to get groceries at one of the few stores that was open. Mr. Katje went in to the store without me, but this meant that when we got home I had to help carry in a bag of food — down stairs (8 spoons).
As soon as we got inside the house I sat down in the office and zoned out for a good long while. Eventually I was able to stand up again, and I rejoined Mr. Katje in the living room (1 spoon). I didn’t want to go to bed right away though I was exhausted and working on spoon deficit, because I wanted to spend more time with him — it was the last day of the weekend, after all. The next day he’d be back to work for the week.
We watched a few episodes of NCIS (2 spoons) and I put away the groceries (3 spoons) and then I brushed my teeth, used the bathroom, washed my face, and went to bed (5 spoons).
Spoon total: -39
This means I ended Monday with a spoon deficit of 39 spoons, and I didn’t even do that much (also, my brain is so fried I’m probably missing some spoon-eating activities — that’s the other thing about losing spoons. You start losing the ability to remember what ate your spoons in the first place. So it’s likely the deficit was higher than -39). This means that Tuesday was spent recuperating, which meant doing basically nothing — especially as Tuesday was an OK day. I didn’t shower or wash my face yesterday because I knew I didn’t have the spoons to do so. Even then, I probably overextended myself again, as I had to make dinner and in order to do that, I had to do some dishes. I was so tired after I didn’t even have the energy to eat dinner and just went straight to bed, leaving the food for Mr. Katje instead.
Today is…not looking so good, so far. I might need to go back to bed before the afternoon arrives.
And so on, and so forth.
So there you go. A day in the life of me, your friendly spinally injured neighbourhood writer. Please remember that things are a little harder for me right now because I’m still recovering from my broken leg, so the prices are all higher. Had I not broken my leg this summer, this day would probably look a bit different.
Regardless, I hope this post helps to shed a little light on what it’s like, and maybe explain why some days I seem fine and the rest of the time I’m definitely not.