muttering in public

Today I was sitting in the car with Wolfgang my pup, our windows all the way down to prevent us from melting. I saw a six foot man with a protruding tummy coming down the street. He was wearing a polo shirt tucked thoroughly into faded navy track pants. The trackpants were pulled almost up to his chest, with the cords hanging out. I could see that he was talking to himself, and as he passed my window I caught what he was saying.

“My disability.”

Then there was silence. A few seconds later,

“My disability.”

Silence.

I just sat there feeling stunned and sad. I wished he had been singing to himself, or muttering about the beautiful weather – but he was pondering his and society’s perception of himself. I wanted to go and tell him that he was great just as he was, that he didn’t need to sweat it. I wished he didn’t even know he had a disability, that he could accept himself without a label.

I found it hard to forget him, hard to see him so internally disturbed by this view of himself. Then it was dawned on me that I was just like him. In my head, a hundred times a day I mutter,

“My disability.”

I say it when I wake up and face the day at home, and when I get weak cleaning the bathroom, when someone asks me what I do, and when I send another message saying ‘no’ or ‘less’.

I’m painfully acutely aware that I am abnormal, and that people aren’t into abnormal. I absolutely dread that moment of discovery in conversation: that I am disabled.

I wished most for the man not that he was able bodied {I do wish that too}, but that he could walk down the street unconcerned by difference or disability. I just wanted him to embrace being him without all the fear. I wish that for myself. I see all the ‘can'ts’ and ‘no longers’ and ‘abnormals’ and the thought that my life is less valuable than another’s is like a load of lead. Just imagine if the whole motley bunch of us mostly ailed humans stopped adding the requirement of seeming ‘normal’ and simulating ‘ideal’ to our diverse issues.

I think if I lived within the boundaries which allow me to function somewhat pain free, and let go of all the “Help, I don’t have a career!  Help, I’m a social failure!  Help, people must judge me because I can’t do things!” I’d stand a chance at less misery, more joy, more living. I want to live the life that I lead at peace with the path I am on. Enough with the muttering, more of the appreciating, loving, giving and receiving grace.   

the chronically well and incredibly successful

found

Be gentle,

always delicate

with every soul

you meet,

for every single morning

you wake up,

there is someone

Wishing,

silently

and secretly,

that they 

had not. 

Tyler Knott Gregson

An old friend wrote," Wishing you all an amazingly productive and and incredibly successful 2014."

Amazingly productive and  incredibly successful. I tilt my head to the side, and think about these alluring words. 

Resolutions are plastered all over social media at the moment, and some of them bring a wry smile to face.

Eat more dinners at home.

Go on more road trips and adventures. 

Loose weight.

Dream big. 

Change the things you don't like.

  

I hope to stay peacefully put in my quiet home, to gain some healthy kilos, and to let go of this detrimental desperation to change my situation. I want to stop comparing my life to the amazing producers and the incredibly successful and the chronically well - because that's when my simple joy is zapped and discontent stabs me. I wish to endure the snail pace and hype free without bitterness and envy. To etch 'wait' on my heart.

I just want to slowly and gently continue, with a peaceful acceptance and no loss of hope. 

a day in the life of me

I often get asked how I spend my days at home, sans work or infants. This is an example of a pretty good day. Pretty good days come when I follow this simple routine for weeks on end, without too many outings/energy-using occasions.

I spend my days going slow, as slow as my eighty year old grandma. If I go slowly and gently, I can exist with minimal pain and actually improve a little. In the long run, I get can give and enjoy more by going this pace, because it fosters stability. I farewell the run, crash, run, crash cycle.

8.30 – I start to surface after Ben has kissed me goodbye for work. I just grunt ‘goodbye’ {this could also be interpreted by him as ‘I love you’} because I like to stay in my sleepy zone. If I wake up early, I have a guaranteed sick day.

9:00 – I slowly crawl out of bed, and start oil pulling. I swish a tablespoon of coconut oil around in my mouth to pull from it toxins which compromise my weak teeth and immune system. After 20 minutes of swishing, I go and brush my teeth. I detest the taste of toothpaste while eating breakfast, but oh well.

9:30 – I make my breakfast, and it is exactly the same every single day. Routine is a lifeline for me.

corn puffs

rice puffs

shredded coconut

chia seeds

linseed meal

nuts

rice milk

then I drink a large glass of luke warm water to keep my body temperature stable, and swallow about twenty tablets.

10:00 – Now I’m heading for a shower, and there is no rushing and not enough concern for water conservation. My dad would die if he knew I used heat lamps in the summer too. After I’m dressed and mascared, I celebrate my victory with a little sit down and no champagne.

10.30 – It’s time to deal with my postural orthostatic tachycardia syndrome {POTS}. A few days without exercise and my head goes black every time I try to walk. I drive to the gym – and depending on health, this is hazardous as my eyes struggle to focus and prefer to stay relaxed and blurry. I have a program of 20 minutes of cardio on the bike, treadmill, or cross trainer, and 10 minutes of stretching. I leave my fellows sweating it out with my speedy workout, and I feel the best I will feel all day while I’m exercising. I feel alive, but it’s worn off by the time I’m back in the car.

11:30 – I’ve arrived home and it’s time to sit down, sometimes with tea and some sugar/dairy/gluten free treat. Then lunch, where I try to stack on the carbs and protein because my body uses energy the same way I use shower water.

The afternoon is less structured. If I’m still functioning, I’ll do a couple of jobs. Maybe I’ll clean the bathroom, or fold washing, write an email, make an appointment, bath the dog. If I do too much, I get wiped out on the couch with a headache and dizziness.

I need to be restful, so I’ll also read books, make things, water my garden, and do all in my power not to fall asleep. Falling asleep sometimes happens accidentally, but it also brings on insomnia, so I have to very strict with myself.

5:15 – Ben arrives home from work! Wolfie the cavoodle goes psycho with yelping and jumping, because he knows he’s about to get a walk.  We drive to the waterfront or botanical gardens for some nature and catch up time. Then Ben cooks dinner or heats up left overs {he makes incredible food!} and I make a salad, or rest if I need to.  

The evening is eating dinner, reading together, and hopping into bed around 9.30. Ben usually picks me up off the couch and carries me to bed. Then I rest up for a few minutes, hop out and brush my teeth.

The day is done! My favourite days of all are these quiet home ones, where I can be so gentle as to keep the pain and fatigue at bay. Tiring days which escalate into accompanying symptoms are the ones where I catch up with someone, have to go to an appointment, have to go to the shops....those days usually aren’t ‘pretty good days’.

Thoughtful people wonder if going out for coffee with friends might help with boredom, not realising that this ‘boredom’ is the key to feeling ok. I have grown to be content in my own company and the silence of my home, and my body thrives on peace. Others envy my idyllic housewife life. And if I felt well, and could care for my home and see friends, it would be a most luxurious and lazy life. But to me this is a full day. Just as one person’s limit is a 40 hour work week, mine is a shower, gym and a job. 

Because who is perfect?

Pro Infirmis
mannequins of people with disabilities.


It is so beautiful when reality is accepted and loved.
We don't want reality hidden.
We are so tired of success & beauty brainwashing because who on earth is perfect?

a delinquent body + quotes to soothe

This is the week of ailments. And such variety! of location and severity and duration. 

You just never know what will be next, it's Bertie Bott's Every Flavour Beans with an abnormally high percentage of vomit and bogeys. You want to bath the dog, but instead you are whisked to bed with blurry vision. You are besieged with stomach cramps demanding fetus position in the middle of the evening. Your world starts to sway as feed yourself dinner, and it keeps swaying when you're in bed with your eyes closed. Your body is as volatile and delinquent as a body can be. And all you can do is rest & wait, and re-read your favourite quotes and pictures made by your friends.

"He also serves who only stands and waits." 

-  John Milton

"She stood in the storm, and when the wind did not blow her away, she adjusted her sails." 

- Elizabeth Edwards

"I have learnt to kiss the wave that slams me into the Rock of Ages." 

- Charles Spurgeon

the best guilt-free dessert ever

Photo from onesmallpot

It is my birthday soon. I have come to struggle with birthdays. My issue with them is not primarily that they no longer involve marshmallows, and milk chocolate. They are my teary days because another year has passed, another hard year of sort of coming to terms with the loss of my health and lack of recovery. I have high hopes that I will be less blue this December.

Here is the plan for dessert. It tastes incredible, and I'm having berries as a treat - this is so exciting, berries!!

This recipe is sugar, dairy and gluten free. There is no guilt or sacrifice involved.
From Sarah Wilson's 'I Quit Sugar' book.

Blueberry Quinoa Crumble

Ingredients:

1 cup of nuts and seeds {pecans, almonds, pepitas, sunflower kernals, anything.}
1 cup cooked quinoa
1/4 cup shredded coconut
pinch salt
80 ml rice malt syrup {get your hands on this fructose free sweetner from Coles, it can be used as a substitute in anything.}
3 tablespoons butter or coconut oil, melted
1/2 teaspoon vanilla powder {optional}
3-4 cups fresh or frozen blueberries
coconut milk or yoghurt to serve. {I think the coconut milk is incredible!}

Method:

Preheat the oven to 180 degrees C. Using a food processor (or knife) roughly chop the nuts and seeds. They should still be a little chunky.
Add the quinoa, coconut, vanilla and salt and pulse a few times to combine.
Combine the syrup and butter in a large bowl, then add the quinoa mixture and stir.
Arrange the berries in a baking dish, sprinkle with vanilla powder and scatter the quinoa mixture over.
Bake for 20 minutes until golden, serve with coconut milk or yoghurt.