Friday, December 20

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
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. 


  1. This isa great post. It's great to shaw so people are more aware. I find with my ME that I need to do the same as you - pacing and being very gentle so I don't do too much and crash. Many people ask me " but are you not bored" yes I'm bored, I didn't choose this but I'm choosing to make myself better the only way possible. It is a full time job. You're doing great and all the right things. I hope you have a great day today. Emma xx

    1. Thankyou for this lovely encouragement! I love to know that I am not the only young one who has to live the gentle and unstimulating existence. It IS a full time job! And pacing takes so much thought and self control. I hope we both recover one day soon and never forget all we learnt on our crazy {sloow} journey. Xx

  2. Love this Dee :) and I love this Gregson quote at the end - too good!

    1. Thankyou. This poem's compassion just blows me away too Sash!