Hello, darlings. It’s high summer here in Montana, and I am having one hell of a time accomplishing anything. I hope you all know what I mean. There’s family visiting from out of town who are taking up all of my free time. Between running a fledgling publishing company, doing freelance editing and writing work to pay the bills, and trying to maintain some kind of creative life, “free time” is pretty much nonexistent in my life, so it’s been a tight squeeze.
But then, last week, things got even crazier. For those of you who don’t know, I’ve had rheumatoid arthritis since I was less than a year old. It’s always been a part of my life, so I’m pretty used to it. Most of the time it doesn’t slow me down much. But, last week, I went to see my rheumatologist. There was a slight mix-up in my medication schedule. It’s a boring story so I won’t go into detail, but the upshot is that I was advised to go for a week without one of my two regular meds before starting up with my next prescription refill. (They’re pretty hardcore immunosuppressants that were developed as cancer treatments, so they’re not the kind of thing you want to accidentally take too much of.)
No problem! I was feeling fine! Just tired from my over-packed schedule. I’m used to chronic illness! Nothing I can’t handle.
Well. Fast-forward to this week. I feel like tepid, useless shit. I’ve been a mega-grump all week. “Used to chronic illness,” my ass. Brain fog has led me to make stupid mistakes, and then make more mistakes when I try to correct the first ones. Exhaustion has me wanting to stay in bed all day, but physical discomfort makes it difficult to actually sleep. Acute loss of appetite, but the malaise caused by all of the above makes me want to eat my emotions, anyway, so I’m just kind of nauseous most of the time.
And here’s the kicker: although my body is clearly experiencing a bout of extreme physical pain as my immune system turns on itself, trying to devour my own joints…I don’t feel the pain. I just feel as if there’s cement in my joints, and that they’re sometimes stiff. Like, I can feel the inflammation, and I can feel how tired I am, but because my brain literally developed AROUND chronic pain, it learned to filter it out early. When I do feel any pain in my joints, that means that means that I’ve surpassed my insanely high threshold for such things. And this week I’ve felt a bunch of pain. So, like, it’s real bad.
Because here’s the thing about a chronic illness when you’ve never known life without it: Sometimes you forget you have it. Sometimes you go for so long just taking your meds, living your life, that you experience moments where you think that maybe you’re better. Maybe you could just learn to live right and leave all the medications and doctor’s visits and bloodwork behind. Maybe you’re healthy now. And that’s how I felt when my doctor said I should take a week off from my meds. I thought, “Yeah, a week off! I’ll be fine! I’m not really sick!”
Well, folks. I am really sick. This week has been a reminder that my body is, at all times, lying in wait for me to fuck up. I just have to give it the tiniest opportunity, and the RA hijacks my body and also my brain. Because of the no-pain mechanism (which I thank my brain for developing), I often don’t realize that I’m experiencing a flare until I’ve already been feeling like shit for a while. Lucky for me, most flares only last for a few days before they subside, and they don’t make too big an impact on my life. They’re usually brought on by stress, lack of sleep—the kind of thing I can correct quickly and move on from.
But this one was brought on by me living like a normal human being for a week. By neglecting to put chemicals into my body—chemicals that knock my immune system on its ass so that it can’t try to eat me. It’s a reminder of just how dependent I am on a fucked-up healthcare system that doesn’t give a shit about me. That if our system went down tomorrow and they stopped making my medication, I’d be done. My life as I know it would be over.
Considering my chronic illness, which causes equally chronic fatigue, and my medications, which also cause fatigue, I’m a pretty goddamned energetic person. As I mentioned, I run a publishing company, work multiple freelance gigs, and have creative, social, and family lives. I like to keep busy.
But this week was a reminder that a tiny change in my medication regimen leaves me unable to live that life. I literally had to stop performing most of my regular tasks so that I could focus on one small editing job. I answered some e-mails, and I maintained a bare minimum of involvement in my own company. But that’s really it. I ran no errands. Made no plans. Sat in my office and edited, and drank water, and cooked a few meals, and that’s all I could manage. Not because I did something wrong, but because I stopped doing something right. For one week.
I guess methotrexate, and RA, and my body in general, are all a Sword of Damocles. I guess that’s just where I live—under the blade of chronic illness. And you know…it sucks. That’s all.
Part of me wants this essay to point to some greater issue, some movement, some important truth that could speak to millions. But honestly? I’m tired. I have a bunch of things to claw my way through today, and I already spent most of my energy on this. I’m not going to edit this. I’m just posting it because I need to get this venomous feeling out my head and into the world. So… uh. Here you go?
Important Note: I am NOT looking for advice on how to handle my autoiummune disease. I do NOT want suggestions about medication, holistic options, diet changes, exercise regimens…None of it. I eat well, exercise intelligently. I know my limits and my body and my illness. I’ve lived with them all for three and a half decades. This is not a cry for help. It’s some venting from a person who’s lived her entire life with this shit hanging over her head. This is my life, my body, my experience, my reality. I’m writing from an incredibly vulnerable place, and you are NOT welcome to tell me I’m living it wrong.