It's 6.14am, and I wake up.

A day in the life as a chronically ill single parent.

I wrote this several weeks ago and promptly forgot it existed. Please enjoy.

It’s 6.14am, and I wake up. I don’t really want to wake up yet. I have no need to wake up yet. Actually, I laid awake feeling yuck about a social interaction until close to midnight, ailed by adrenaline messing with my dysautonomia, and I could really do with a sleep in today.

It’s 6.36am, and I’m lying in bed with my eyes squeezed shut, willing my body to give me another hour of sleep. I start to cough. I try to ignore it. I start to wheeze. Good morning, asthma - I reach for my inhaler, eyes still closed, and take a few puffs. My asthma’s been really uncontrolled since I had a terrible bout of influenza a few weeks ago, and it likes to interrupt my mornings. Between calming breaths I continue my attempt to go back to sleep.

It’s 6.54am, and my child bursts into my room. I don’t know what she’s talking about but she’s at full energy, dumping information about something or another. Between excited sentences, “is today a school day?”. “Yes it is. Please go do your morning mahi.” Almost always one for the concept of an independent routine (so long as I don’t supervise, hold her accountable, or notice) she bolts from the room. Maybe she’ll do her jobs. More likely she’s playing in her room.

It’s 7.32am, and I hear the most pitiful meow. The cat is on my bed end. Staring into my soul in the hopes she receives cat biscuits in return. I drag myself to fill her bowl. It’s already full, but she’ll eat it if I kind of rattle it a little bit.

It’s 8.07am, and I’ve made a lunchbox, eaten a sad half sandwich, checked the child is fed and clothed, and reminded her that I can in fact hear from another room whether or not she is brushing her teeth with her electric toothbrush. I calculate whether I have the energy to both shower and work today. I don’t. Good thing I work from home. I make myself look presentable enough to do a school run.

It’s 8.31am, we are at school, and my child does not want to do her jobs to get ready for her school day. Her legend of a teacher immediately gets on her level, reminds her that if her jobs are finished she can play with her friends. When she heads to the cloakroom (do we still call it that?) he checks in with me. First about how she’s doing (“not too rough a morning, but she might be tired today”) and then about how I’m doing (“…kei konei, e hoa”). I take a seat and wait for my child’s jobs to be complete so I can go.

It’s 8.45am, and it took 10 minutes to put away a bag and a reading packet, write her name, and get a chair from the stack. She required reminders from both the teacher and I at every step, even though she’s done this five times a week for most of the year. Three other children have arrived, finished their jobs and run to play before mine even got to the last one. When I stand up the colour drains from my face and the room spins, and I hope no one notices (but if they did I know they’ve gotten used to it). I walk home, world spinning on me, hoping I don’t have to go out today.

It’s 9.14am, and today I have two zoom calls and 500 words to write. I don’t have to go out. I make a coffee and take my meds.

It’s 9.56am, and I’ve been in my first zoom call for 26 minutes. The fatigue hits me. I already attend calls lying down, eyes only open when they’re needed, but my stamina is shrinking every day.

It’s 10.30am and I have another call. This time it’s a drop in session for a uni course. I keep my camera off and try to take in anything that’s shared, popping in with loosely phrased questions as needed. I’m really thankful to study in health because it means my lecturers actually get it.

It’s 11.35am, and I need a nap. I also probably need electrolytes. I decide whether I have energy to make and consume lunch - I don’t, but I force myself to fetch a nut bar and a glass of Vitasport. I should buy shares in Vitasport.

It’s 12.03pm, and I know if I nap I won’t sleep tonight. I need to decide if I do this writing, or if I need to spend that energy elsewhere. I haven’t been able to clean for a few days and we’re going to run out of bowls if I don’t run the dishwasher. So I pull a chair up to the kitchen bench and I load the dishwasher. I remember that to make the dishwasher actually work I have to press the on button, and I remember that I have to put the powder in it to make it clean the things. These are considerable achievements from the person who forgets laundry in the machine for several days straight.

It’s 12.24pm and the couch is closer than the bed, so that’s where I drop.

It’s 1.37pm and I start to prepare for the 3pm school run. Snack, electrolytes, more rest. The social worker calls. The referral she made for my child was declined at this service too, but she has an idea for where she’ll refer her next. The next organisation might be able to offer a support worker. I immediately reply “yes please”. We’ve had 3 rejected referrals, but maybe the next time we’ll get lucky. A support worker would be really nice, because it would give my child some of the busy social and activity time she craves that I just can’t manage.

It’s 2.57pm and I walk to school. My child’s class is always late out - apparently, because the kids keep asking really big questions about how the world works right at pack up time. I love how much these kids just want to find everything out. It’s a really neat class full of super intelligent bilingual kids. I don’t love that there’s no seating where I wait for my child. I pace to keep my blood moving because if I stand still I will become one with the concrete.

It’s 3.02pm, and the first thing my child says when she sees me is “can I have a playdate?”. This is a several times daily occurrence. This child is consistently unsatisfied with her life unless she has other children around her, which is a shame cos I’m too sick to make her a sibling. Some days we’ll stay on the school playground but I can’t manage that today. Thankfully we have friends who are also chronically ill and needing reprieve, and they are happy to come over.

It’s 4.31pm, and the other parent and I have been sat on the couch, eyes mostly closed, taking turns to answer our kids’ questions or respond appropriately to their stories and disclosures every 1-6 minutes when they burst into the lounge. It’s easier when we dilute the children, but both kids are piece by piece debriefing their school days and both struggle a bit with school, so there’s a lot of involvement from us still. We catch up on where we’re at. Neither of us have managed to find the right support yet - not for us, not for our kids. We talk over the most recent rounds of cost-cutting. Both of us speak in low, slightly slurred monotones to conserve energy, because we don’t have to hide our chronic illnesses around each other. The cost-cutting of essential disability services stings even more knowing we could never get the help in the first place. The conditions we share sit on a funding exemption list, and our kids have been waitlisted for assessment since they got into early intervention services. (Both kids are now too old for early intervention services.)

It’s 4.58pm, and before our friends have even gotten out the front door to go home, my child turns to me. “Can I please have a playdate?”. At least she says please. When I say no, she explodes. “You’re a big fat bully fart man!”. All I can muster is “okay.” After a beat she moves to the next request on the list. “Can I please have my tablet?!”. I fetch the key and remove it from my favourite purchase of 2024, the lock box. Now that we have this, my kid doesn’t climb the furniture searching for devices anymore.

It’s 5.42pm, and we need dinner.

It’s 5.55pm, and we still need dinner.

It’s 6.12pm, and we still need dinner.

I reheat a meal I froze on a good day.

It’s 6.16pm, and my child declares “this food looks like vomit!”. “Okay,” I muster. “I still need you to try and eat it.”

It’s 6.37pm. “My tummy is saying I’m full.” She hasn’t eaten.

It’s 6.54pm. I’m back on the couch, and I hear rustling in the kitchen. “What are you doing?” “I’m getting a snack.” “You didn’t finish your dinner, you said you were full!” “But I’m not hungry for dinner I’m hungry for a snack!”. “Fine, have your dinner or a piece of fruit.”

It’s 7.26pm. She’s in her room, I’m in the lounge. Standing up before I absolutely critically need to will make me collapse, I have to minimise it. I use our smart speakers to broadcast a message into her room, asking her to please brush her teeth. I hear playing, I hear moving, I hear bathroom playing, then finally I hear the toothbrush.

It’s 7.31pm. I have gotten up, returned her bedding from her blanket fort to her bed, and tucked her in. I go to bed.

It’s 9.30pm and I can’t sleep, but I can’t do anything else either.

It’s 10.47pm and I conk out.

It’s 6.59am and I wake up. Hey, I slept in. My cat is very delicately poking my face with her paw. My child is standing above me, telling me a story and I have no idea what about. I start to cough.