Tuesday, 27 December 2016

Nature observations

I started writing these observations while ago when I was quite sick and spending a lot of my time lying on the ground, just watching the life on the forest floor. At first glance the bush out the back of my house is mainly full of rubbish and environmental weeds like gorse. I used to walk through without paying much attention. But from sitting out there for many an hour this year,  I have come to realize it is far more surprising, diverse and full of life. 

Here is to the details revealed from life in slowtown. 

In the bush out the back, observations #1. Life. 

I lie my body back on the ground, and press my bare feet up against the minute, bunched furrows in the bark of a native cherrry tree. Overhead, sprigs of its light-green, feathery foliage tumble down towards me. Cutting grass seed heads, tapering to impossible points nod and sway in the breeze near my face. A fantail dips and trills from the branches above. 

Scattered on the ground are crunchy fragments of dead bracken fern, patches of matted, fibrous stringybark and the neat curls of discarded peppermint bark, delicately embroidered with the erratic patterns of insect scribbles. Lichens slowly colonize chipped slabs of mudstone. Thousands of snapped twig pieces have been confettied by time and wind over the soil, forming an inter-hatched carpet with the fallen leaves - all different, delicate surprises of fading color and decaying chlorophyll.  

Shiny black bummed ants industriously scuttle, traversing the length of sticks, under and over leaf fragments, waving their antennae, patrolling, scavenging, dutifully investigating their territory of detritus. Slender sundews hold out their sticky, viscous traps, modified leaves, hopeful for juicy insect nutrients, some already digesting small bodies ensnared yesterday. A small orange mushroom has freshly headed its way up from the world of roots and mycelium beneath.  A jumping spider, with its calculating beady black eyes, bravely takes a leap onto my chest, then springs away again. 

A yellow eyed, sharp eyed currawong swoops to the ground and casually saunters along a fallen, ragged gum limb. Chest forward, wings folded back, swinging its tail as it walks, it cocks its head and levers its dexterous bill under a piece of bark, stabbing at and gulping down an excavated grub. 

Wind rustles through the canopy of suspended gum leaves above. 

I am here. 

In the bush. Observations #2. Multidimensionality. 

After rain. Piercing afternoon Sun. Warm air lifts from the damp forest floor into my nostrils. My foot is resting on the rough bark of a eucalyptus amygdalina and I've positioned my body to conform to the shade-shape of a native cherry. An ant scuttles its 6 legs hurriedly across the page. 

Currawongs clackety clack as they chase each other above me, their wings loudly beating through the air, deftly swerving around the pillars of trees. There is the hum of a golden-winged insect swarm, encircling a tea tree in constant pulsing movement. A common froglet pumps out a consistent back and forth melody from the gully, creaking and croaking like a squeaky gate pushed and pulled, open and closed by an impatient kid. The gently bowing native currants radiate deep green, and little brown wrens hop jerkily through their prickly foliage, whirring and buzzing in serious, consternated conversation. 

The seasons are changing. At eye height, clusters of vibrant golden pea flowers are transforming into sweet little downy pea-pods, on the ends of their wiry branches. Throughout the wet, fresh spring, new bracken ferns have been emerging from the ground, day by day unfurling so they now stand boldly upright with their stems arched backwards, showering in full cascades of sunlight. 

Sometimes I lie here and just watch the movements of light and shade move in the breeze. The shuffling and swaying of the drooping native cherrytree fronds. The diamonds of sunlight glinting on the waxy eucalypt leaves. I imagine I'm a fish underwater, and this is my kelp forest. I could swim to the tops of the trees, encircle the trunks, drift amongst the branches, nestle in the leaves of the canopy to look out above the surface. Then I would dive deep back down again, to alight gently, and rest on the ground. 

Wednesday, 14 December 2016

3 blogging ladies who've helped me on my travels through slowtown

  1. Beth Berry on not bouncing back. 

I don't have too much in common with Beth, as she lives in America, has an incredibly busy, chaotic life with 4 daughters and works as a life coach. 

However I discovered her blog through this article that was shared many times on my facebook feed: 

"Dear mothers, we were never meant to bounce back after babies...", 

"Not physically, not emotionally, and definitely not spiritually. We’re meant to step forward into more awakened, more attuned, and more powerful versions of ourselves. Motherhood is a sacred, beautiful, honorable evolution, not the shameful shift into a lesser-than state of being that our society makes it seem........"

She explains how 'bouncing back' is seen as desirable in today's society. So is being strong and being able to take on as much as possible without breaking. Nobody wants to be vulnerable, needy or create waves. States of dependency and uncertainty are to be avoided and feared. But Beth says that what the world truly needs, is the opposite of this. 

"The softening, the tenderness, the vulnerability, the shift in prioritization, the depth of love — these are some of the qualities our hurting world needs most. "

I decided to apply the idea of not bouncing back to chronic fatigue. 'Bouncing back', implies a repulsion, a kicking away of the current experience, and a glorification of the past. It is less allowing of happiness, contentment and expansion in the here and now. Rather than seeing myself as fighting this experience, I see myself as traveling through. Although cfs is ridiculously difficult at times, 'traveling through' validates the experience, and places true value on the lessons I am learning. I do hope to one day reach a place with the kind of health I previously enjoyed, but when I get there I also hope to be carrying close to my heart the lessons of slowness, centredness and kindness from cfs, and I would like to view this is a forwards, not a backwards progression. 

2. Toni Bernhardt on 'Don't Know Mind, and Self Compassion. 

I don't have too much in common with Toni as she is a grandmother twice my age, lives in America, and had a career as a successful law professor. However she has been sick with symptoms that sounds very similar to mine, for 15 years. Toni's writes about her illness in her blog and books through a Buddhist lens. 


One of the insights that Toni has helped me with is keeping a "Don't know mind". When I have an energy crash or a symptom flare up, it is easy to get quite miserable and stressed about it. My mind spins all sorts of worries and fears. What if I get worse? What if I'm sick for 15 years like Toni? In 15 years my mum might be too old to look after me and my friends will have all got bored of me long ago! 

However, the truth is, that I don't know. I might bedbound for a few weeks, I might fall deeper down the hole, or I might wake up feeling well the next day. Toni writes about dropping the stories and coming back to what is true the present moment. "Woman, lying on bed. Woman, lying on bed in the sunshine."

Toni is also a big advocate of self compassion. How many of us engage in some pretty vile self talk, saying things to ourselves we would never say to others? "Why were you such an idiot and did too much gardening yesterday, idiot, idiot, idiot, don't you ever learn?" And how many of us feel terribly bad and guilty about speaking up about our own needs? "I can't do any shopping or cleaning, and I'm always being a party pooper and asking my housemates to turn the music down and stop whistling, I'll just put up with it this time, It must be so shit to live with me". 

Toni says we need to notice this and instead, take on the radical attitude of actually treating ourselves like someone we love and care for. Imagine if your good friend had a chronic illness. How would you treat them? Would you call them an idiot? Would you hate them for having altered needs and sometimes making mistakes? How would you like to be treated by your own good friends? Probably a lot better than you treat yourselves. Chronic fatigue is hard. We are allowed to feel miserable sometimes. We are allowed to not do the dishes when we feel rotten. We are allowed to make mistakes and not know what to do. We are allowed to ask for help. We are allowed to communicate our changing needs. 

3. Amanda palmer on the art of asking. 

I don't have too much in common with Amanda palmer as she is a wild, outrageous, crowd surfing and crowd funding rockstar. 

Amanda began her career as a a white-face painted, wedding-gown wearing street statue, who gave people flowers, and a few moments of deep and meaningful eye contact, in exchange for for donations. It made her more money than working in an ice cream shop, and yet she was often challenged about not having a 'real' job. Later on as a musician, when the demands of her record label no longer gelled with her need for connection with her fans, she went out on her own and crowd funded her next album. She repaid her fans with house concerts, heartfelt blog posts, the opportunity to paint her naked body, couch surfing at their houses whilst on tour, listening, care, friendship and the creation of community. And she wrote a book about the exquisite difficulties and immense rewards of asking for help and support.  

Asking is hard and brave. Like crowd surfing, or street performing, asking is taking a risk and it makes us vulnerable. Asking, however, can also be a gift, as it shows people we trust them. It allows people to be generous to us, and for us to all become closer to each other from giving, receiving, and bravely believing in each other. 

I hesitated before asking friends to come over for a working bee at my house this last weekend. I've been asking for so much this year already and we already had a permablitz here a few years ago. Surely everyone had their own big list of undone garden and weekend jobs they needed to do. But then I remembered that when I was healthy, hanging out with friends and accomplishing meaningful physical work together was exactly the type of thing I enjoyed doing, especially if there was a good lunch afterwards. 

The biggest gift of this year has been the help from friends and strangers whom I have asked for help.  My friend Millie, who would have written something similar to Amanda's book if she hadn't been beaten to it by a famous rockstar, assures me it really is a gift to ask. I hope that is true. 

Saturday, 10 December 2016


Sleep, oh sweet blessed country of restorative unconsciousness, I have lost my way to your portal.
I have misplaced my off button. I'm stuck chugging on, chugging away, sagging, fading, stumbling onwards and falling forwards....
Your entranceways are hidden, opening only when i am not aware that I am slipping through. If I become alert to your nearness, your doors slam shut and you spirit away, leaving not trace nor trail. You dwell in mysterious anonymity. You will not be pursued or grabbed or forced or bent. Your fluid boundary, the membrane between awake and asleep, is porous for only for those not watching.
I am pressed upon heavily from above, all my body pulled downwards towards you, but I do not peacefully drift or settle. My way is impeded by taut, whirring wires. I'm stuck in a blocked drain.
Faithful and reliable for so many nights....Adrenaline, adrenocorticotrophic, cortisone, cortisol, Melatonin...Pituitary, pineal, adrenals. Don't hold me awake...Let me through...
Sleep, sweet sleep, I am here for you. I love you. I will not resist. Come throw your cloak over me and drag me down. I want to fall deep into you, more than I want anything else. I need refilling from your clear crystal streams. I need rocking on your quiet, gentle seas.
I will lie here. I will wait for you.
I am waiting.

Saturday, 3 December 2016

Amusing things I have done whilst having CFS

 1. Shaving my head and watching it grow back....

A shaved head is perfect for chronic fatigue. Its a wild, outrageous thing to do, but it requires no energy. It feels awesome. You don't need to brush it, and showers and baths become much easier without wet hair. If you are worried about looking silly it doesn't matter because you hardly leave the house anyway. And you get to amuse yourself and all your housemates with all the awkward re-growth stages. 3 months on and my hair is defying gravity by sticking up about 10cm above my head. Its quite silly. 
A doctor recommended I try a low carb, high fat (ketogenic) diet. It makes sense when you can't do any exercise that you should only eat slow-burning fuels, and eat plenty of vegetables to give your body the best chance of recovery. The fat makes you less hungry and less prone to blood sugar crashes. Eating fat is fun and makes you happy. (the no-cake, no sugar, no ice cream, very little fruit part is less fun, but I compensate with eating more butter)

3. Reading kids books

Especially Roald Dahl. They are very silly and don't need much brain power. 

4. Watching ants

The microworld is so weird and pretty and terrifying and busy and interesting. 

5. Watching the grass grow, and then watching the wind blow it all about in cool swirly patterns. 

You know, grass stalks can be super tall. Like a metre maybe. And grass is only around 1mm thick. If trees were of that dimension, a tree with a 1 metre diameter would be 1000m tall. Imagine that... 

6. Counting and identifying all the plant species in the bush out the back of my house

At first glance it is all gorse, bone seed and rubbish out there, but I've found 36 native species from spending a lot of time sitting still and walking slowly. 

7. Learning qigong. 

Qigong is good because it is really slow. Its better than yoga for cfs as it requires no strength or flexibility. It is just gentle, meditative movement that supposed to get your chi flowing. It actually does make me feel better. And it can make me appreciate the absolute marvel and miracle of being able to do a simple thing, like lift my arms above my head.  Plus you don't need to go to classes because you can learn it on YouTube. I totally rate it for cfs. 

8. Crotcheting jellyfish 

No particular reason. Just to give to people. Plus about 15 beanies, a couple of tea cosies and some mushrooms. 

Friday, 2 December 2016

Saying 'no': Part 2

I wrote a post last week about how I wish everybody would be better at saying no. Simple 'no's, without long winded excuses or guilt. And not saying yes because we can't say no, but actually feeling resentful about it.
And now I get to decide whether to put that into practice that myself. Ugh. Its way hard.
'Tis summer, and the season of Couch surfers.
Sharing my space with 4.5 house-mates is challenging enough with a chronic illness. However I have spent a lot of time communicating with them about what's going on with me, and now I don't feel so bad about asking them to do things like turn their music down, or not actually talking to them when I go to the kitchen to get myself a cup of tea. "I'm not rude or grumpy at you, I'm just really sick!"
However with my housemates having friends, and friends of friends all over the world, the occasional couch surfer is inevitable. 
Providing hospitality to travellers is a wonderful thing to be able to do. I feel super grateful for people who've hosted me on my own journeys. Last summer, when energy was more abundant in my life, we signed up to a bike touring version of couch surfing and hosted lots of bicycle tourists. It was great to be able to give back and nuture some global goodwill. 
However, last night a recurring couch surfer, who started as a 2 night guest, asked if it is ok to keep using our place as base between shifts of remote area track work. 
Apparently all the other house mates have said its ok, but to ask me first.
Ugh!!! Its so hard to be the no sayer!
One reason being, because its not clear cut. I can live with couch surfers, here and there. A night or two, doesn't bother me, I'll hide in my room if I need to. I just would prefer to prioritize my energy into getting better, rather than answering questions and making small talk in the kitchen with new people. 
He's a very nice young fella and I don't not like him.
I feel like by saying no I am impinging on the pleasure my housemates get from being generous.
I feel that if I say 'no' to him, I need to provide a long winded explanation about my invisible illness and help find him a new place to stay. 
Its easier to just say yes, and hide in my room.
Or maybe I should find another place to housesit on my own, to avoid this problem.
Time to practice what i preach, or not.....

Wednesday, 30 November 2016

Heros of chronic fatigue

Lots and lots of people have been super helpful and lovely during this 8 month (and ongoing) period of illness for me. In this blog, however, I would like to introduce 4 of my

In no particular order..... 

This is Gaby. Gaby is 70 years old and recently bought an electric powered tricycle so she can ride down the rivulet track wearing a helmet that looks like a watermelon. She goes to the local cafe to pick up their coffee grounds and compost, which she feeds to the monster silverbeet in her garden, that is taller than her standing on a step ladder. 

Gaby has done food shopping for me, has made me magic soup with vegetables from her garden, and comes around regularly to give me head massages. Thank you Gaby 


This is Millie. When times are tough, Millie puts on her sparkly pink and yellow crises management outfit and goes out to meet the challenge. She likes planting both metaphorical and literal asparagus, watching her free range guinea pigs, drawing pictures, telling stories and devising a manifesto for a more awesome world. 

Millie is the leader of the asking for help cheer squad. She is also one of the chief cfs understanders, because her husband Garth has had it for 8 years. Even though Garth can get very tired, and grumpy when he tries to fix his CFS by eating only cabbage for weeks at a time, she married him anyway. Millie reckons that if we all were less stubbornly independent and asked for help more, it would allow our friends and neighbours to be generous to us, which would give us all warm fuzzies, and we'd all live in stronger better communities. She has also brought me vegetables from the farmers market, patted my head and always cheers when I ask for help. 

Thank you Millie :) 


This is Qug. What Qug really likes doing is rowing her boat in the tanniny waters of south west Tasmania, looking for her favourite birds and pulling into small sheltered beaches to admire the driftwood and sea beans. She also loves posts cards, membracid tree-hoppers, copepods and pet rats. 

When Qug was a kid in the 1980s, her mum had CFS. This was back when it was called the yuppy flu, and lots of people thought you were just pretending to be sick because you were lazy or wanted attention. During these years Qug and her mum lived mainly off bottled fruit and yoghurt. 

Qug is the Number 1 bringer of quality children's literature to my bedside, and was the lead-coordinator of the league of helpers and headpatters when I was bed bound. 

Thank you Qug :) 

(Qug's mum got well after 10 years of fatigue and now enjoys a life full of singing in choirs and snorkelling.)


This is my mum. She likes gardening, knitting things for her grandchildren, orienteering and teaching orienteering to school kids. 

Mum brings me home made chicken soup, low-carb muffins and many other miscellaneous things from the outside world like brocolli and avocados. She does my laundry for me, she took away all the grotty, greasy tea towels in our house and made them properly clean again, and she bought me new underpants and threw out my old ones with out asking, because she is a mum. She changes my bedsheets, and she does my job in my share house far better than I ever did (cleaning the bathrooms). She drives me to the doctor and is all all round good mum. 

Thanks mum :) 


And thank you all heroes of chronic fatigue, big and small :) 

Monday, 28 November 2016

My top ten possessions, before and during chronic fatigue

I wouldn't describe myself as an overly materially-motivated person, especially not when it comes to new and shiny gadgets, or anything fancy or shiny. However I must admit that several material objects have given me great pleasure to possess, and there are some that have provided great assistance to my life as a fatigue-ee.

Before I had chronic fatigue, my top 10 favourite possessions were:

Now I have chronic fatigue, I am really grateful for:

So hooray for things and stuff, sometimes they make life a whole lot better and easier. 

(And I guess I should mention the ipad that has enabled my new non-active form of entertainment, digital finger painting and blog posting). 

Sunday, 27 November 2016

My flavor of chronic fatigue, illustrated

From reading the internet i have learnt that everyone's experience of cfs is unique and special, just like a snowflake. This is because 'chronic fatigue syndrome' isn't actually a real disease. Rather, its the fallback label for when, after a barrage of tests, nobody can figure out why you are stuck in sick and tired mode. 

It could be caused by a multitude of different maladies, as it can manifest in many different shapes and forms, aches and pains, aversions and limitations, but the primary symptom is persistent, debilitating fatigue. For me it has been weirdly comforting to read of others symptoms on the internet - I guess it validates my experience, and makes me feel like I'm not just weird, alone and making this stuff up in my head. So to describe my own experience, here are some metaphors and similes, accompanied with some dodgy finger drawings done on an iPad. 

The first and foremost point is it is not a healthy 'had a big day' tired. Its a sick tired. The tired that you get with the flu. 

Interestingly, I think my first symptom this year was that I rather suddenly became a mega introvert. I felt an painful aversion to interacting with people. I just wanted to hide and protect myself and I could feel really strongly how interacting some people drained my energy. (However my previous episodes of fatigue did not affect my social energy, only physical.)

In my last episode of fatigue,  my first symptom was an aversion to what is usually one of my favourite things: cold water swimming. Being cold nowadays is a very unattractive idea. 

When I'm healthy, exercise gives me energy and endorphins, like the alternator in the car recharges the battery when you drive it. I usually need exercise to feel good physically and mentally. When I have fatigue, exercise just drains out my energy without recharging it. Its like I have a broken alternator. 

Or maybe its like I have a leak in my energy fuel tank that drains out as fast as I fill it. 

Or perhaps the pipe from which 'energy' comes from is blocked and its only dripping through very slowly into the fuel tank. I need to rest for a long time after exertion to fill up again. 

Or I have really cheap, low quality batteries. They indicate they are fully charged, but a few minutes into a gentle walk, they are suddenly empty, I am exhausted and the distance to get home has become very long. 

Sometimes I can be quite wired, as my body relies on adrenaline rather than 'proper' energy to get things done. This can make winding down hard, and sleep unrefreshing. I wake up groggy and sluggish. Luckily this time I have been sleeping well, but last year I got a dose of the 'wired and tired'. 

Brain fog makes thinking feel like pushing your bike uphill with the brakes on. 
Sometimes just standing up from lying down feels like:

Last time I got better in a linear fashion, but during this latest recurrence Ive stumbled upon a lot more falls and setbacks along the way. Its like I've fallen some of the way down a very deep hole. Its a long way up. I don't know how deep the hole is and it is scary to think. The only way out is to feel my way very very carefully, taking very very slow steps. If I rush I may lose my grip, or cause the walls to crumble, and I could tumble and crash even deeper. I'm on a precarious ledge and I'm finding my way by touch. How much I keep trying to climb out, and how much I am patient and wait, is a constant dilemma.

But sometimes when I am waiting there are nice things like butterflies to look at. 

And the truth is, as I can't really see my way around down here, I don't actually know what the terrain is like above or below me. It could get worse. It could also get better. And the internet also tells me that, while there is no silver bullet, 

(I have enjoyed and found inspiration from listening to the collection of audio interviews with cfs recoverees, on Dan Neuffer's website "CFS unravelled".)