The After Hours

Part Two :: A Day in the Life

The phone rings and beeps and gets answer-machined. My sleep doesn’t happen.
Dad calls in with a giant roll of paper for the kids.  They are going to love that!  I see big posters being created over summer, murals and magic pathways and city-scapes and maps. We have a cup of tea and catch up about the family.  His visit is short, but I am grateful. My stamina is low today.  I need to get back to bed before school pick up.  Just a bit more horizontal time to get me through the next bit of verticality.

The phone beeps again.  It is my friend Cami, she is popping in before school pickup.  But I am pleased, she knows me like family, so she bounds up the stairs and joins me on my bed.  She’s one of those pocket rocket girls who always has energy to burn. We chat, solve some problems in our micro and macro worlds and then, it is suddenly time to go.  I gingerly move to stand. My balance has been a little off today and I am wobbly walking down the hall. I sink into the car seat with relief. A fifteen minute round trip for pick up before I need to stand again.

school pickup

Zed is a box of birds at pickup.  He has much to tell me about his day.  We have a little chat about what the afternoon holds and I acknowledge that he has lots of girls to handle back at home. He says “Mum, did you know that you are the only girl I don’t have to handle?”.  Ha!  He’s a funny little fella! His little funnies are an infusion of happiness every day.  The drive is an easy one, school is close to home. I look through the windows of the car at a stunner of a day.  It’s a gorgeous city; a really pretty drive. The breeze tickles through the window when we pull up at the lights.  We’re nearly home. I park the car and pull myself up into a standing position.  The walk inside is short, I make it up the stairs using both hands on the stair rail. Zed and I tackle his homework while the girls do theirs in their rooms.

4 pm.  I look at the clock.  Zed’s homework is complete and signed off in his homework diary. That makes me feel some accomplishment. It doesn’t always get done which makes me feel ashamed. He heads off to build Minecraft Worlds with the girls. I have at least an hour before I need to start dinner, so I sink back into my bed. It’s such a relief.  I can hear happy noises coming from the kids.  I decide to start this second post about the rest of my day.

The hubster arrives, close on 5.  He wants to know if I would like him to cook the dinner tonight. I look at him gratefully.  It’s been a big day of pushing through. It’s a huge relief that he sees I’ve been struggling. I smile and thank him.  We have a little cuddle, a small chat. We’ve been talking about getting some help around the place, someone to help us with the things I am not managing, someone to take the pressure of him. We discuss a new plan that we are happy with and he stands and gets going with the dinner. I think I should take a picture of him doing that, to use for this post.  My legs are so painful as I walk into the kitchen.  Somehow lately my femurs and pelvis feel like they are made of elastic.  So weak and achey. It makes me wobble.  I lean on the door frame and take this picture to show you a man who deserves recognition, but miss his head from the shot.  Nevermind, back to bed.

school pickup(1)

And then I lie here, looking out my window on the late afternoon. I am so weary I don’t know how I can adequately describe it.  My eyes begin to droop and I am floating.  Drifting away on the afternoon sounds… more traffic, an aeroplane, the cupboards in the kitchen opening and shutting.  The most beautiful man in the world is carrying us into the evening. I sleep.


Dinner is busy.  Five at the table. The Hubster, me, Bee, Zed and Em. CC is on study leave, so she is at the shops.  😉  Yummy food. I join everyone at the table for dinner.  Some nights I just can’t do it, but it’s a big priority for us, so even when it is really hard to sit upright, I push for it. Mealtimes are the catch up session, the time we all get together and learn about what the day brought us all. Sometimes we play word games or construct progressive stories. It’s hiliarious!  Sometimes I’m grumpy and it’s not so much fun.  Tonight was a middling kind of dinner time. The kids discussed the latest developments in their Minecraft worlds. Apparently Em’s virtual cat died when it teleported into a swimming pool. So much laughter about that, so I guess it isn’t as tragic as it sounds.  They try to explain to me that in Minecraft Survivor mode you can die unlimited times. I don’t understand the point of a survival game if you can die and then be not dead.  They give up trying to explain it.  Then Em’s parents arrive to pick her up. We have a reciprocal arrangement with them that helps us to manage the kids’ swimming.  Em comes to us on Wednesdays and her parents do the swim run on Fridays.  They are our neighbour friends.  Thank goodness for them. It makes so many things possible.

Tomorrow, the cleaner will come to give our house a proper clean. I look forward to Thursday afternoons, such bliss to have clean floors!  Sometimes I will go and sit in the bathroom after she has cleaned it just to breathe in the smell of the cleaning fluid.  It makes me happy to know it is clean. It won’t last long, but for that moment, it is perfect. We need to prepare for her, so after dinner I perch on Zed’s bed and try to wrestle his recalcitrance into the form of a cleaning robot.  I thought he’d be happier to clean up if we used the robot voices. But, no. There are knights and soldiers and motorised hamsters hanging out with elaborate cardboard sculptures and dirty socks. Time to get on it.  It takes us a long time. By the end of it, Zed’s stuffed toys and I have all gone to bed, long before the kids.

school pickup(2)

We’ve got great kids; they’ll choose their own audio book and get themselves sussed for sleep time, usually.  Tonight Zed is particularly tired, so he melts down before bedtime; his Big Daddy picks him up and carries him into bed.  Bee gets herself organised for school before her later bedtime. Late Spring evening winds are tousling the branches of the tree outside my window. I am finishing this post. Mentally toting up the jobs I didn’t get done today. Berating myself for being so useless, for being such a drain on my husband. I check my thoughts and console myself with the thought that soon it will be time for my favourite cuppa.  The ‘after hours’ cuppa with my man.  I make my way back out to the living room and we sit/lie in comfortable companionship, tonight we’ll watch some Sci-fi we’ve saved.  The whole time we are watching I will be jiggling my feet and flexing my ankles.  It doesn’t help the peripheral neuropathy but I instinctively try to fix it by moving. The pins and needles and burning sensations will make it hard to focus. I will go to bed before ten. I will feel like I have been running a marathon all day.  I will sink into bed like I haven’t seen it for days, even though today it has been my cradling arms of a mother, the sanctuary of my sickness.  The place where I pass my days.  Hello again, pillow.  No need to ask you how you’ve been.

…and the lights go out on another day…

Who I Appear To Be

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It’s a strange double life I am leading.  Like i’m a secret undercover agent.  Except I am not saving the world from crime, I’m just surviving, one day at a time.  There’s this magical spell that covers my words, so when I say “I’m not well”, people don’t hear it.  If I do manage to explain anything to them, they forget it and assume I am well the next time they see me.

I don’t look sick, I don’t ‘act’ sick.  I just am.  Sick.

Deep undercover in my role as a ‘well person’.

Because the person you see, is Rachel, the wife, mum, the lady who is there sometimes… but lately, not so much.  You see me in the car, driving my son to and from school, or at the supermarket, leaning on my trolley and contemplating my groceries.  You might see me on a weekend, in a cafe with my family, or having a picnic in the park.  You don’t perceive a problem because you may be wrapped up in your own problems.  Busy surviving your own stuff. Life isn’t only hard for me.  And, after all, I am an expert at covert operations.  It’s actually easier than being real.

Sometimes, faced with friend’s status updates about feeling tired, or having a cold, I would like to post a real status update of my own.
Something like:
“YAY!  A new anti-nausea med to add to the mix!”
“I’m so CHUFFED!  I just administered my own enema and it WORKED!  Go me!”
“Today the courier guy said he hoped I would have a better afternoon, ‘cause he could tell I had already had a terrible morning.  And that was so NICE.  So kind from another human being.”

But I don’t.  I stay undercover and spend my energy on making the least waves possible.  It’s not that I don’t want to tell people what is going on with me.  I’m a talker.  Nothing is sacred, I’ll tell you everything, in one sitting, given the chance!  No, it’s because I have learned from my experiences that people really don’t mean
 “How are you?”  when they ask it.
People really don’t want to know.
And the crushing reality of that, when you try to answer the question, is truly devastating.  It makes you feel small and insignificant. It makes you want to run and hide.

Rachel the wife:  is rarely intimate with her husband anymore, even though she loves him.  She can’t bear that she smells like urine, that she might leak wees or poos in bed.  So she goes to bed in continence garments and tries to pretend that intimacy will happen tomorrow night.  Cuddling is better than nothing.  But she is afraid, so afraid that he will stop seeing her as an attractive person.  Her belly distends from gastric dysmotility and she feels his eyes appraising her body.  His face is blank and she can’t read it, so she imagines what he is thinking… it isn’t complimentary.  He misses who she was and he wonders how they got here.  He’s not sure if he can keep going forever like this.  What will happen when they are older?  How many more problems will there be?  Will he be her carer?  She imagines his thoughts and rolls away from him, hoping he will somehow know how much she loves him.  She is so ashamed. He deserves so much more than what she has become.

Rachel the mother:  asks a lot of her children.  They have to do jobs, unlike most children their age.  Her daughter makes her cups of tea and is kind to her brother.  Her son strokes her on the face and tells her it will get better.  She knows her kids are extraordinarily empathetic.  She’s proud of that, but she worries all the time.  At what cost to their childhood?  How many ways will her being ill, screw them up?  Can she stop their anxieties?  Should she go more undercover?  She knows she can’t do all the things they want her to do.  She agonises over how little she can help at school, on trips, at extracurricular activities.  She pushes herself to take them where they need to go, but the cost; it is so high.  Every morning, she braces herself in bed for the efforts of every afternoon.  She cries.

Rachel the friend: is best online.  Or text.  She has limited energy to maintain friendships.  So she has few friends and lots of acquaintances. Her  friends are so very special, so vital to her joy.  She loves people, but it’s hard to keep it going when her energy is spent on her kids, on her husband, on doing her housework at snail speed.  She is often lonely, often down.  Mostly, she seeks solace with other people like her, from the comfort of her bed.  They are in bed too, online, on laptops, tap tapping away.  Shouting a two dimensional hello from a continent far away, but not expecting her to walk the malls, make small talk over a glass of wine or go out for a night on the town.  They get it.  Those cyber sick buddies, her new social circle.

That is me, driving my son to school.  I am fighting back nausea, running the torturous marathon of a five minute drive.  I smile at you, his teacher, through the window of my car while my body aches all over and my left eyelid muscles fasiculate into an unintentional wink.  My eyes are so dry that I am blinking like a cartoon flirt. I hope that you won’t pause to chat so you won’t see what a wreck I am today.  Thank goodness I can drive through to pick up and don’t have to stand.  I couldn’t stand today.  You smile and tell me I look well.  I thank you.  What else am I to do?

That’s me, in the supermarket.  I am gripped by the searing heat of nerve pain, like my whole left leg has been dipped in a vat of hot oil.  I grasp hold of my trolley and try to look like there is something interesting in it.  I calculate whether there is enough food in there already to feed my family this week, because I know I won’t be shopping anymore today.  I brace myself for the lifting of groceries into and out of my car.  I wince at the thought that someone will judge me for using a mobility car park.  I swallow it all and smile at you as you pass.  I know you from school, right?

That’s me in the cafe with my beautiful family.  I want them to have as many memories of normal togetherness as they can.  I wanted to stay in bed, but not as much as I want them to have an ordinary activity.  We’re ordering and I am watching the waitress blur in and out of focus.  My head is a grey fog this morning.  I need to focus on the conversations but it is taking enormous concentration.  I don’t know what I want to order.  Any of it might make my tummy problems flare.  My son says something funny, like he does, and I laugh.  It is a spontaneous, loud, laugh.  It’s out before I can moderate it.  My bowel spasms and my breath is snatched from me.  The tears sting my eyes.  I see you walk past the cafe, I smile-grimace, and wave.  I know you from the kids’ swimming, right?

That’s me, lying on the picnic rug.  For me, it’s like a raft in an ocean of ever moving waves.  I am clinging to my piece of flotsam, watching the kids riding their bikes.  I am talking to my patient husband, he needs normal, too.  I feel the shakiness inside myself and wonder if it’s nearly time for my pills. No, not yet.  I concentrate on the feeling of the breeze on my hair and face.  It’s a beautiful thing.

You see me, care free. You know me from somewhere, but I am not who I appear to be.