Sloth, perdition, joy? On being bedbound.

I’m an expert, so you have to trust me. Most sensible people realise that, of course, it’s rubbish being in bed all day and every day. It’s a commonplace of chronic illness discourse to lament insensitive comments along the lines of, “Must be nice, lying around instead of going out to work!” These come far less often than you’d think from a glance at the memes that have spread, urticaria-like, across Tumblr and Instagram in the past few years.

Actually of course, it’s crap. Why, though? We’re currently in November. Let’s be honest: I don’t have to get up and go out to work tomorrow. I will be staying in bed, all day. People will bring me vegan food and iced coffee and lemonade: sounds okay, doesn’t it? Telling that side of the story does seem to lend credence to oh-you-lucky-disabled-buggers. What is so bad about it?

First there are the things that hang over you. The worries. Bed sores and blood clots. Every time a nurse from my GP surgery comes out to see me, these are their two biggest concerns. I’m not the worst off here, because I can usually (not always) turn myself in bed: all the same, I’m not moving enough. I’m more afraid of a blood clot than of bed sores, because if I get one I’ll be moved into hospital.

Second, there are all the things that work less well if you’re lying down. The human body isn’t designed to be recumbent—or at most slightly propped—all day. It messes with your organs, your circulatory system: everything. Whatever has made you bedbound in the first place is unlikely to be helped by your heart getting weaker, your blood moving around the body less efficiently and perfusing poorly, your muscles wasting, your intestines working less well … I could go on, but I’ll spare you.

Have you ever tried to eat lying flat? There’s an art to it. It’s not all that hard to become deft at handling light cutlery (so you’re not dropping food on yourself all the time), but good luck swallowing and keeping it all down. Gravity isn’t helping you like it usually would. Swallowing pills lying down can be considered either an ordeal or (if you’re a real optimist) a special talent.

You might think the biggest problem would be boredom. For me that is not the case at all: I just think! All the time. If I was any better than I am, I would get the fuck out of bed; the only reason I’m here so much is because I have no energy and my body is malfunctioning a lot. As such, when I do scrape a bit of energy up, I have no problem at all finding things to channel it into. Poetry, editing my poems, Duolingo (I do French for continual grammar practice, German and Italian for my “main” languages, and Dutch and Russian for fun), meditation in many different styles, emailing friends when I can. I’m hyper-conscious of not being able to contribute to my household much, so I do research and organisational tasks like gift-shopping, interior decoration plans, clothes shopping for the rest of the family, planning all our menus, and following up on any complaints. I use social media a little, partly for friendship, connections and self-expression—but increasingly for activism, as it infuriates me to see the big diversity push in British poetry mostly leaving disabled poets behind. I read poetry pamphlets, and bigger books using my phone—often this is the only device I can hold. I handle some of the listings and messages on my Depop, where I’m selling off clothes and jewellery to pay for extra minor (non-NHS) medical expenses. I listen to hours of podcasts, audiobooks. I read the internet, I go down rabbit holes, I learn, I plan.

…none of that is much. It doesn’t begin to be comparable to having a job, and I deliberately wrote that list to explain how easy it is for me not to get bored, rather than to illustrate exactly how labour is divided. I have a lot of help. I need a lot of help. I often can’t brush my hair or wash my face. And you know, yes, that is embarrassing to admit to, but I promised myself that if I started writing for this blog again, I would face facts like these: the ugly and the gross. There’s nothing new about saying “chronic illness isn’t glamorous”—but who ever thought it was? Often the very same people saying it isn’t glamorous are portraying an unreal image of the day-to-day in which they still are glamorous, attractive, poised, cute, or however they’re shaping their brand.

There shouldn’t be any brands. These are our bodies. We don’t know how long we have them or what they’re going to do to us, for us, or with us. My self, the assemblage of matter I call my “me”, is a mystery to me as much as to anyone. And it’s hard to live with that, to fill time without knowing how much time: a long life, a lot of pain, or a freak rupture, a sudden end? This isn’t some “me” thing. I’m in bed with the time to put this into words, but this whole paragraph is true of you: every single reader.

What did you do today? Were you bored? Why, or why not? I wasn’t bored, and I wasn’t happy either. Life between the bedclothes is always, for me … an in-the-middle kind of thing.