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.

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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…

Light Relief, The Tree and Me

 

source: harrypotter.wikia.com
source: harrypotter.wikia.com

I can be a bit intense, apparently. Is that a symptom of Dysautonomia?!  Ha!
I can get a bit serious.  Because sometimes it is hard to find the funny side of things.

But I can’t ever take myself too seriously, because I have been gifted a hubster who enjoys making fun of me (in a loving way) and making me laugh. A lot. His irreverent and naughty sense of humour has lifted me out of many a blue funk.  And I just unwittingly provide him with more comedy material, so it’s a mutually useful relationship.  Just lately, he’s been taking the piss (that is kiwi for teasing) about my self help studies.

One of the very useful exercises for self-care, one that I mentioned yesterday, is using your own hand as a ‘hand of compassion’. He thought that was hilarious.  I’ve been enduring his eyebrow toggles and suggestive looks every time I mention the ‘hand of compassion’.  He reckons he knows just where my compassionate hand should land, somewhere in the vicinity of his body.   Wink.  Nudge.  Eye roll!  He had the same joke about one of my favourite poetry books Where Your Left Hand Rests by Fiona Kidman. I think he hoped it was an instruction manual.  Honestly, are all men this way?

And then we were talking about a mindfulness exercise that I wanted to write about today.  I have been learning about how being “present” can provide you with an opportunity to calm down the negative self talk.  See, when I am thinking about how my body feels, it kicks off a litany of destructive thinking. This is a very common thought pattern for me because this body likes to slap me to attention, like an annoying brother, incessantly pushing the point, digging me in the ribs, lifting up my eyelids YOU AWAKE? RIGHT, SINCE YOU ARE PAYING ATTENTION… LOOK AT ALL THE WAYS I CAN ANNOY THE CRAP OUT OF YOU TODAY!  POKE!  SLAP! BLINDSIDE! THWACK!  And so I respond to that little shit with some very negative talk.  But I direct it at myself, because that is a bit less crazy than talking to my body as though it isn’t me.  I talk to me.  Inside my head. The track runs similar to this one:
Ugh.  Not again.  I can’t keep doing this.  Oh no…  so much is eroding.  I can’t go to school this morning to see my little guy do his thing. Another thing to miss, why couldn’t it be yesterday? I could have done it yesterday.  Poor me. Poor family. Ow… Yuck, that is so revolting, why do I have to deal with so much yuck stuff? How much worse is this going to get? Will my man get tired of dealing with me? My kids! Will I end up in a stinky nursing home, a drain on my family’s resources? Will I die before I’m ready?
And a freak out will be had.  Does that sound familiar?  Does your mind talk to you this way, too?

It is impossible not to be mindful of how my body feels. But by using the technique of mindfulness, it is possible to arrest the thinking patterns that give me anguish.  It’s like a kind of meditative awareness. So this is what I am doing.  Russ Harris (author of the book I talked about yesterday, The Mind Slap, and inventor of this exercise) says that if you are experiencing a lot of stress, you might need to do this excercise often.  It designed to help you be present with your pain. It helps you to develop the awareness of your thinking such that you don’t slide into the thought patterns that distress you.  The habit of that nasty self-talk that makes living with Chronic Illness a more scary, lonely, upsetting place to be.

THE TREE __ An Exercise in Mindfulness(4)Of course, if you are horizontal, you just have to adapt the tree image.  You can use your imagination about how to make the trees roots, trunk and branches work.  If I am stuck in bed, I use the foot of my bedframe to ‘ground’ myself. Or place my feet flat on the mattress with my knees up. Just adapt it to fit you, in your minds eye you can be any shape you want to be.  Here’s my audio version if you would rather listen:

 

 

So anyway, there I was last night, sitting in the living room, thinking about some serious shizzle.  I see my hubster out of the corner of my eye.  He is waving his arms around like he’s trying to get my attention.  I turn to look at him and all six foot three of him is doing an impersonation of a whomping willow.  In slow syllables he intones: “I am a tree…”  and I snort my tea.

Mindfulness is really good.
So is light relief.