the life horizontal

this post brought to you by lucozade and bread

When I started writing this newsletter (Substack is calling these “articles” now, as if I’m expected to have a hot take every time, which is definitively not what’s happening around here) I was really determined not to complain about my illness on here. This instinct was driven primarily by an intense horror of being pitied; everyone already thinks being really sick, using a wheelchair etc. is awful so why would I do anything to confirm that? I was here to prove my life was NOT awful. But of course everyone’s life is kind of awful sometimes, whatever that may mean to them individually. And if you’re really sick for long enough at one time you kind of stop caring about being pitied because you kind of stop caring about everything¹.

I write this horizontally; today marks seven consecutive days of horizontality. A nice thing about being horizontal is you look at the sky a lot more. Today I tipped my seat all the way back in the car on the way home from the hospital and looked at endless bare treetops, like roots drinking from the clouds. The sky with no road visible, no telltale signs and infrastructure, feels big and anonymous, as if you could be in any country or even someplace that doesn’t really exist.

The last week has been horrible, horrible, horrible. I’m still having a million tests. It’s become clear at this point that I have a few different things going on, a few different autoimmune characters in the cast. Let’s meet them.

She’s unmistakeably femme; she likes to do my makeup and she does not go for subtle. The Inflammatory One doesn’t go for subtle in her own appearance either, enjoying a big splashy rash and some (un)aesthetic purple swelling. She wants to get everyone’s attention but doesn’t like to be put in a box – if they can’t decide whether she’s Lupus or Dermatomyositis or both that means they’re talking about her more, right? She’s a massive drama queen and definitely kind of vindictive and ouch is she mean when she’s angry. She’s obsessed with the sun and wants to live at the beach, and she spends all winter sulking and hiding in her room (she would love it if we moved to Florida). I kind of hate her but also appreciate her for being unapologetically herself; if it wasn’t for her, I wouldn’t have gotten admitted to rheumatology when I did. She’s still trying to decide if she can get along with our new roommate Hydroxychloroquine or not.

This one’s the weirdest because, like, they’ve lived with me for a decade and I still know next to nothing about them, not even their name. But I have a strong suspicion that the Autonomic One is messing with the cortisol thermostat, even though they swear they haven’t touched it and keep pointing at Prednisone who doesn’t even live here any more. They have super weird personal habits, they aren’t really a fan of eating, never exercise and kind of just like to lurk in the background and stay up all night playing videogames. They do their best to skedaddle as soon as anyone comes looking for them, though we’ve found traces of them here and there when they forget to clean up after themselves, oh and they totally wrecked the plumbing when they first moved in and no one has figured out how to fix it properly yet. My new neurologist keeps following them around trying to spy on them and I think it’s freaking them out. They didn’t seem to be able to live with Prednisone and moved out for a bit last year, which was great, to be honest.

Hey, this one has a name! And other than that all I know about her is that she’s here, and she’s kind of alarming, and she gets tons of mail². I don’t know for sure if we’ve ever even interacted; APS has this habit of maybe doing stuff and freaking everyone at the hospital out and then kinda blaming it on the Autonomic One and disappearing into her room. She’s kind of a scary individual, to be honest – she has a pretty significant rap sheet of crimes and I’m not sure how she hasn’t been arrested yet. But I guess she likes me so far, relatively speaking? She is on a long lease so she’s here to stay, and I don’t really know when or if she will decide to make some changes about the place but I kind of live in fear of that day. She was totally unbothered about Prednisone and she doesn’t care about Hydroxychloroquine either, they can’t boss her around. She does not like children.

roommates from hell

So that’s the lineup of this sitcom³. In general the Autonomic One and the Inflammatory One DO NOT get along⁴, and right now I think they’re in an all-out war over the apartment⁵. The horizontality is at the behest of the Autonomic One, who just wants to loaf around and watch weird youtube videos and never take the trash out. The Inflammatory One, on the other hand, wants to throw wild parties and trash the apartment. They can’t compromise so they have been taking turns, each doing their own thing while the other vacates the premises. So we do a night of agony and fever followed by a day of dizzy nausea, then a night of wakeful shivering followed by a day of itchy, painful rashes. I hate it. Where the hell is the landlord⁶ in all this?!

I have to stop because I feel sick⁷ but maybe next week I will talk about the drugs of it all. This is a crowded apartment.

An Odde Thing To Read

This is a great book of poetry. I feel too sick to have any more coherent thoughts about it, sorry.

An Odde Thing To Listen To

This Joan Baez album.

An Odde Thing To Watch

I really enjoyed this video from the excellent J Draper about bicycles and feminism. In case anyone else becomes obsessed with the epic anti-suffrage magazine cover she references in it, I tracked it down and am kind of considering buying a print.

An Odde Thing To Do

Alright so doing things has been a little hard for me lately even by my standards (see above). So this week’s suggestion is an extra accessible option, which is to look at the sky for a while. Lie in your garden or a park, or tilt your seat all the way back in your car and observe some clouds and treetops. Imagine all the places you could theoretically be and see that same view. I enjoyed it.

Alternatively if you’d like to draw your illnesses, mental illnesses, meds, insecurities or nightmares as annoying roommate characters, that could be fun too. If you do so, please share them in the comments.

no one asked for this recurring feature but that was an oversight on y’all’s part.

Aesu is still hanging out with us a lot and we think she might be trying to eat the Christian neighbours’ chickens, which would put her in cahoots with the hellhound. The exciting thing is we have maybe acquired a kestrel⁸ because we keep seeing one flying in and out of the same couple trees, and once we decide for sure if s/he/they live on the Pightle we will need a name for them so please drop your kestrel name suggestions in the comments. Also the hellhound found and ate an owl pellet in the driveway which was a truly disgusting experience for us but a delight for the hellhound, and is exciting because it means we may have a barn owl in the barn though no one has seen it yet. This concludes the bird update.

That’s all from this week’s Chronicle. Tune in next week to see if any more verticality has occurred. Wishing you much Oddeness until then,

1. Incidentally, kind of not caring about anything is in and of itself a symptom of low cortisol because cortisol is a stress hormone. When you’re low on it it’s hard to get stressed and everything seems kind of unremarkable and shrug-worthy, which probably sounds pretty nice to some people and might even sound nice to me if I could care enough.

2. I have decided that checking your antibody titres is kind of like intercepting your disease’s mail and I am quite amused by this. Antiphospholipid Syndrome must sign up for a lot of free catalogues and stuff at my address because my antibody titres are hella high.

3. The jokes could be a bit funnier to be honest.

4. I’m actually really glad they don’t get along because if they teamed up that would be even worse.

5. The apartment is my body, in case you didn’t get that. 1a Celandine Court, or something. I also have to live here which fucking sucks right now. If I had a way to move I’d probably consider it, though this place has a lot of sentimental value… it just feels like me, you know?

6. Who is the landlord in this analogy actually lol. Is it God?

7. What a surprise!!!!!!

8. As a household we recently learned that kestrels were historically known as windfuckers and tbh we haven’t really used the word kestrel since.