Can we talk a bit about chronic illness?

Specifically, acid reflux. I want to talk about my reflux.

I’ve been holding back so much from my public life. I’ve stopped blogging here almost completely because I always feel that any post here has to fit my “brand” — whatever my brand is. I think the problem became me trying to fit myself into some mold I’m not; trying to always be camera-ready, even in my writing.

When I first started blogging I talked about everything that was going on in my life. I didn’t hold back. Over time I decided there were some things I’d prefer to keep private, but generally I still blogged about my life. And then I became a writer, and suddenly I needed a writing blog.

I’m tired of this. I’m tired of feeling like every post here has to relate somehow to writing or reading or literature or just “My life as a writer” as if that is separate in any way from the rest of my life. I’m tired of feeling like there needs to be a theme for my blog. There is a theme: me. There is a brand: a genderqueer, disabled, chronically and mentally ill writer who tries to pen books when zie’s not feeling like absolute crap, and who has fucking had it with the stigma around talking about one’s illnesses.

So today I want to talk about reflux. Warning: this post will contain some graphic description of the effects of acid reflux. Not recommended for emetophobes.

Continue reading Can we talk a bit about chronic illness?

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

Perfectly Broken

Lately I’ve been dealing with a lot of depression, anxiety, and self-loathing, and I figured I’d talk about it here, because chances are other folks go through this too and it’s always helpful to know one is not alone. General content warning for the post.

So, first: I want to say that objectively, my life is pretty great. And subjectively, too. I’m engaged to a really awesome person who respects me and my career. We live together in a nice place, in a nice neighborhood. I’ve started a new business and my career as an author is going pretty well. Overall our life is a nice thing.

But of course this does not preclude shitty things happening to us, and of course our lives are not 100% great. There are definitely areas that are causing some long-term stress and, for me at least, depression, anxiety, and all those other fun things I get to deal with already for no particular reason. Except now they’re being given a reason, and I’m finding my already fragile mental state being poked at constantly.

The main thing that’s poking the bear of mental illness for me right now is my physical state. Some of you know that almost 3 years ago I suffered a spinal injury. That’s actually not entirely accurate; the injury itself happened in 2009. It didn’t flare up like a fireworks show, however, until 2012, leaving me bedridden and unable to walk for weeks. After a lot of hard work in physiotherapy, I slowly was able to walk with a walker for short bursts, and then longer bursts, and then finally upgraded to a cane. I’ve been walking with a cane since 2012, though there have been times when I’ve been able to go without for a short period of time.

Likely, had I continued with the physio after getting to that state of wellness, I would eventually have gotten to a point where I could walk without a cane, and probably get somewhere near the state of health I was at before the injury knocked me down. Even in the years I had the injury but it hadn’t flared up I was doing pretty well, despite the new, sharp, knife-twisting pain in my lower spine that I had chalked up to “Another weird permutation of the chronic back pain I’ve had my entire life because genetics is a shitty lottery.”

But I didn’t continue with the physio. I quit in 2012. This wasn’t because I wanted to, or because I thought I was done: I wanted to continue and knew I needed more. But I could not find a new physiotherapist when I went back to Nanaimo after staying in Coquitlam for several weeks, and not only that — the price went up. You only get a few visits at the reduced rate with a doctor’s prescription, you see, and I would need to continue to go every week to see progress.

Fifty dollars a week is too steep for me. Then, and now.

So for 2 years I have lived no where near what “normal” is for me, just dealing with the pain, taking a strong painkiller on the days when I can’t move without it, and continuing to do things that are probably contraindicated for my spine’s condition but hey, what else am I going to do? My social life has dropped off considerably and my ability to do a lot of things in a short period of time has gone to zilch, approximately. I now need a few days to recover after an event that wouldn’t have left me winded 3 years ago.

It has been an adjustment, to say the least. I still overextend myself because I am used to a body that can handle more than it can. And though mentally I have gotten better since it first happened, I still have dark nights of the soul.

So when I broke my leg this summer — 3 months exactly as of this coming Saturday — I slipped into depression again.

Continue reading Perfectly Broken