Thursday, 7 June 2018

Why "well done" is often not the right thing to say

I've been feeling a little bit better lately (I think partly due to a new experimental drug called ldn, and partly to a years worth of extreme pacing), so one morning last week I decided to try going to the local grocery shop on my own. 

It turned out that the music and all the people, the choices, the driving and walking, carrying the basket and being upright for so long was all a bit much, and I ended up sitting on the floor at the checkout, fending off people trying to help ("I'm okay, I just need to not be standing up"), and in bed feeling yucky and shaky for the rest of the day, with my groceries still sitting in the car because I'd run out of juice to bring them in. (Luckily it's winter so the car wasn't an oven). 

But hey, it was a bit exciting while it lasted. I got to choose a very nice, big cauliflower, a jar of my favourite lime pickle and some delicious smoked fish on a marked down special - an option you don't get with online grocery shopping. 

It really is great that I could even think about going out, as I've been mostly housebound for over 18 months. However there is one thing that I would like people to know about CFS. And that is, although I appreciate and recognize the good intentions behind it, "well done for going out Jen" is not the appropriate thing to say. "Well done" is the approriate response when I don't do silly things like that, where I overestimate my capabilities and push past my safe zone of activity. A more CFS -appropriate response is  "I'm so glad you were well enough go out. I hope you don't suffer too much payback". 

Unfortunately with chronic illness, a temporary improvement doesn't necessarily indicate the beginning of a linear recovery trajectory, even though everyone, including myself would love it to be so. People want to hear good news about my health. It's hard letting them down, when a temporary increase in capability is usually followed by a rotten flare up of symptoms again. 

I do think think it's good to test my boundaries in a small way, infrequently, but the willpower and challenge in this illness is in holding myself back from doing things I want to do, not in pushing myself to do any thing. CFS is distinguished from other illnesses by the fact that over-exertion makes things far worse, and can take months to recover from. 

I've really had to learn to curb my natural inclination to optimism. 


Ah well. In better news, I 
did recover from my exertion and was able to make a very excellent tandoori cauliflower curry later that week. 
And I've signed up to a local veggie box delivery scheme, who brought me a very excellent celeriac among other things. And I'm lucky enough to have parents and friends who still buy me groceries too. Things are okay. 

Here is a picture of the celeriac I drew. 

Wednesday, 18 April 2018

I miss this lady

I miss this lady. 

And all the glorious wild places she used to go all over Tasmania. 

And how alive and joyful climbing mountains, bike riding and  body surfing and used to make her feel. 

How she could do so much digging, planting, cooking, shopping, carrying heavy things, multi-tasking and organising, and only be a little bit tired afterwards. 

I miss how she could be engaged and interested in the world, and also make stuff happen. 

I miss how she could be gregarious, generous, friendly and welcoming. 

I especially miss how much she used to laugh when playing silly games with friends, without worrying she'd feel sick later, just from the exertion of laughing. 

I miss how she assumed that she could rely on her body to get better when she got sick. 

I miss that she used to eat everything and anything with relish and gusto, without worrying if it would affect her symptoms. 

I miss her imagination about what her future might be like. Maybe having a family, growing food and having adventures with small people or pets in Tasmania. Or if not, adventures anyway, and pursuing meaningful work in environmental rehabilitation and education. 

But she's also doing ok after a totally unexpected curve ball that knocked her off that path, into a much slower life of chronic illness. 

So far she's been lucky enough to be held in a supportive, stable place by friends and family. And there's been a lot of patience, adaptation and softening. Stillness and simplicity. Acceptance that not many of us do get to live the lives we expect.  And no less beauty, despite the much smaller spatial and energetic envelope she lives in. 

Before was better. But she's doing alright. 

Friday, 12 January 2018

On rivers

The non-linearity of chronic illness is something that I am still, 22 months in, trying to get my head around.

Until I became sick with Chronic Fatigue Syndrome, I lived my life thinking on a mostly linear plane, when it came to the passage of time and events. Growing up, finishing school, getting a university degree, traveling on a timeline, vigorous bushwalking journeys from A to B, growing older, completing seasonal work contracts. I look back on memories via photographs marked with dates and ages, and have made detailed plans for future events on countless scraps of paper. Just like a 'normal' person, I periodically got sick with flus, colds and tummy bugs, and was rightly miserable while these lasted. But my intermittent snotty maladies rarely held me under for more than a few days. My previously-functioning immune system quickly quelled the foreign invasions and I regained my strength, stamina, verve and spark.

But not this time. Now, when I have the greatest need for the comfort of the Buddhist principle of impermanence, this illness does not shift. It holds me under. Occasionally it lifts a little. I start to feel less sick and my hope and spirits rise, but again and again I am dragged back under the swamp of malaise, doubly miserable with disappointment and disbelief. What is going on with my body? Why can't I recover?

In my university days I was an adventurous, outdoorsy lady, keen for pursuits that would spark, splash, frighten or exhilarate me into feeling more alive. I joined a motley club of quirky like-minded sorts, and spent many a weekend whitewater rafting. Thrill, exploration, challenge, love of the natural world, and the silliness shared and friendships formed were drawcards. Ice cold feet, squeezing into early morning damp wetsuits and the real dangers of hypothermia and drowning did not impede us.

River-travel, it may seem, is an essentially linear occupation. The boats are launched at the 'get in' and the crew wedge their feet under the baffles and lean forward, grasping brightly colored paddles and cocking their ears for commands from the guide: "forward paddle! Back paddle! Stop! Over left! Hang on!". After negotiating a twisting series of river-rapids and rocks, squeals from cold water dunkings and a midway lunch stop where everyone jogs and jumps by the shore to warm their frozen feet, the boats are disembarked from at the 'get out', a somewhat further way downstream. Dinged up outdoors-bum cars are a welcome sight, and life jackets, wetsuits and soggy Dunlop volleys are gladly peeled off in exchange for dry warm socks, fluffy polar-fleeces and woolly beanies.

Of course there were several times when things didn't go to plan, due to various snags and mishaps of the journey. Late starts were common, due to too much 'faffing' at bakeries in the morning to mollify woozy student hangovers, or because members of a car convey got lost in the network of old forestry roads that lead to the river. Other mishaps included 'wraps' where a momentary loss of control lead to the raft getting well and truly 'wrapped' around a boulder with the entire water-weight of the river pinning it there, and the crew dripping wet and stranded on various rocks up and down the river, unable to hear each other shouting over the roar of the rapids. Often several hours were needed to free the boat with a complicated system of ropes and pulleys from the shore, and at least one person bravely leaping over slippery, wet rocks to attach the lines to the stuck raft. I was more than once part of a wet, bedraggled group of rafters who had to resort bush-bashing for hours after nightfall to make our way back to our cars and dry gear, and then needing to traipse back again the next day to retrieve the abandoned rafts. But, essentially, our river missions were always intended to be linear, from up the river to down the river, whether that was over several hundred meters on a short, sharp whitewater course, or several hundred kilometers for a week or two with food and camping supplies strapped tightly onto the rafts in watertight barrels.

But are river systems linear for all entities involved? Are rivers linear for fish, tadpoles, rainforest trees, water-reeds, platypus, driftwood, debris or the water itself? It is not always such a simple drift down to the sea, particularly for those items of flotsam or jetsam without the power of self-propulsion. Water recirculates, in furiously raging stoppers or slow gentle eddies. Logs get jammed for decades in tight spots, or left high and dry above winter flood lines. I ponder this because sometimes this is how CFS makes me feel. Like I'm a piece of driftwood on a river without a paddle, battered about by the current. Sometimes I'm held under by a pounding, furious stopper, which can hold me down for long times, occasionally relenting and letting me up to gasp for a breath, before dragging me down under again. Sometimes I feel like I'm stuck in a strainer, with all the heaviness of sickness and suffering flowing through me, while I'm snagged underneath the waterline, unable to talk or move. Sometimes I'm just stuck in a gently recirculating eddy, which can be quite pleasant, as I meditate, watch clouds and birds and flowers, and wile away the time crocheting, with intelligent, eloquent podcast hosts as company. But I still see no way out. I've lost my agency. I've lost my paddle. Or at least the strength to get up off the floor and use it.

I'm confident I'm not the first to compare life to a river. Sometimes shallow, rippling like diamonds in the sunlight, sometimes deep and dark in quiet, peaceful gorges, sometimes narrow and crashing over rocks, sometimes wide, slow and lulling. We are all carried down various streams and currents in life. We get stuck on rocks and snags along the way, or are swept over life-changing waterfalls, emerging, if we are lucky, battered and bruised at the bottom. Sometimes it all goes too fast and hard, and sometimes we can't see our way out. We all take steps and slips backwards, forwards, sideways, up, down, inward, outward, as time rushes through us. And sometimes we all feel like we have lost our paddles. But the river is constantly flowing, always down to the sea. Which of course, my biologically aging body is, if the ocean is analogous to death. We all reach there, at some point or another.

And when water reaches the sea? Cold, dark-colored river water with its cargo of silt, flotsam and jetsam is gradually mixed back into the salty brine. Daylight shines on the ocean surface, evaporating and raising the water molecules high. Air pressure differences transfer them to the mountains, where they gather in swirling clouds. Rain falls, little streams flow. There's no real linearity for the water molecules, just different lengths of time in different states of being.

Alright alright, so I'm not really sure where I'm going here, dabbling my toes in the timeless metaphor of water and river. I don't really have anything deeply philosophical to say on the nature of life and the universe, reincarnation or the recirculation of souls. Its true that linearity may be just an illusion of simple human minds. A lot of life is cyclical after all. Seasons, nights, days, moon cycles, cleaning, getting dirty and cleaning again, weeding, planting, eating, shitting, decomposition, the death and rebirth of stars and the expansion and contraction of the universe. It's all very interesting to think about, but rather daunting. All I can say is that I doubt we'll ever know the true nature of reality, beyond that our molecules will be forever recycled, until the end of the earth, and then once again back to stardust. I just wanted to write a story to say that sometimes CFS feels like I'm stuck in an endless, steep-sided river valley without any agency, at the whims of the weather and water. And all the non-linearity of chronic illness is a really difficult thing for a simple, right-brain-dominant human to get her mind around.

I still often dream of those rivers and river trips. Often with pangs loss for my previous health and youth, love affairs and friendships, and of course with a memory biased towards the beautiful, sunny, hazard-free days, rather than those where leeches were found in unspeakable spots, face-biting hailstorms assailed us mid river, or we were huddled in miserable boggy camp spots under leaking tarps. I reminisce wistfully, especially in summer. 'Now is the season of sun, long light and overhanging river-side waratahs', I sigh, 'when I should be drifting down beautiful, remote Tasmanian rivers and swimming in their sun-dappled honey-brown water, laughing with friends around the dinner pot of curry, and sleeping on soft rainforest soil under ancient myrtles, under the stars, with the water always swirling away, downstream beside us. But no! I'm stuck at home in a sick body, indefinitely, and aging into my mid thirties. All my old river-friends are home with their toddlers, real jobs and home renovations. My life shouldn't be like this!', I cry out in resistance to my new reality.


Then sometimes I remember some river-safety training tips. Apparently if you are stuck in recirculating, powerful stopper, desperate for breath, you should unintuitively, actively, swim to the river bottom, where you have the best chance of being flushed out by the downstream current. Or when you are surfing in a kayak you need to go against your instinct and lean into the wave, to avoid being flipped over and tumbled in the whitewash. Or with quicksand, the less you struggle against it, the less you will sink. I think these are probably apt, if difficult-in-practice metaphors for dealing with chronic fatigue. For leaning into the fear, pain and loss, accepting the here and now, and not wasting precious energy in angst, fear or denial. Maybe this low energy state is my 'new normal'. My new baseline. It could be a long while before the river valley changes character again. Or it could be soon. Nobody knows what is around the next bend, or what will come with the next change of weather. I just know I don't take the ability to paddle for granted anymore. 

Tuesday, 2 January 2018

2017: How it was for me

Dear all, Happy summer solstice, religious celebration of the birth of historical rebellious nice guy, beginning of a new year on the western calendar and holidays for those of us in non-essential professions!

Here is my synopsis of the year for all you internet friends and strangers across the globe.

The short version:

"Pretty meh, but not terrible, I'm still happy to be alive".

The long long version:

Yeah, so I'm still sick. That sucks. At the start of the year I was still expecting the recovery mechanisms to kick in some time soon. But they haven't yet, so I've had to try to come to terms with this incapacitation and houseboundness being an indefinite thing. That was, and is no easy task.

On average I was been sicker than 2016, but without the massive fluey crashes where I was unable to get out of bed last year, and needed to be rescued with multiple deliveries of soup from friends. Maybe because, with help of my wrist-monitor, I'm better at radically pacing myself now, to avoid the massive dumps. I have also gotten more used to this new way my body is. Ridiculously reactive to minimal stress and exertion. But although pacing may have helped me manage things, it hasn't been a cure. Yeah giant un-composted turdballs. It's stupid! But ah well.... shit happens, and it is what it is.

Below is a graph of my number of steps per day over the last year, with my average for the year being 1763.

May was definitely the suckiest month. 

But, there were many silver-lined moments..... (other than living in a house with this stunning view of kunanyi / Mount Wellington!)

Many people did many, really kind things for me, like me bringing me food and wool and clean laundry and library books and head massages and building me height adjustable kitchen chairs, fixing our toilet, cleaning or even just sending supportive messages. I am really grateful for the continued help from you lot while I'm stuck in this invisible jail. You're all THE best. Thank you!

So what else did I do with a whole year of being mostly horizontal?

I faffed around on Facebook tons, which was both good and bad for my mental health. It kept me connected, but sometimes it made me feel more sad about missing out on life, and sometimes even more sad for the people who have it far worse than me. Like cancer, war, suicide and even worse chronic fatigue. I joined an online support group and have received a lot of generous advice from fellow chronically sick people across the country. But this also confronted me with the reality of how long and how bad people can have this illness for. I got myself in the newspaper ( and some friends organized a film screening of Unrest (, to try to raise awareness about how this debilitating disease, previously ridiculed as "yuppie flu" is in desperate need of more research funding, and belief from doctors and social security organizations. Scientists are now saying that a simple test for me/cfs is not far away, and that should help our cause. In the meantime it's a diagnosis of exclusion.

So exclude we did! My parents gave me lifts to the doctor or for blood tests 33 times (I only left the house 38 times in total!). I saw nine different health practitioners. I lay on the floor in their waiting rooms. I researched and researched cfs/me online, and sometimes got told weird and conflicting things by different doctors and doubted myself and doubted them and researched some more. I swallowed hundreds of different pills and supplements, sometimes scientific in my approach, but mostly not, just hoping that something would help. I obsessively kept track of my steps, diet, nutrition and my heart rate with the really annoying beeping wristband, made graphs and looked for trends in the hope of gaining some control over my health. I wish I knew what was going on in my body and could make sense of it. But I still don't really know, other than going to the doctor always made me tired!

I slept and napped a lot, often with the help of valerian herbal sleeping pills, when I got too tired and wired to sleep. These are the only supplement I've ever bought that I can say actually work, and they are my beloved and precious savior.

I read kids books and took up watching tv (iview) again for the first time in 17 years. I crocheted,  podcasted and mostly managed to cook my own food and clean up after myself in the kitchen, even if I had sit on the floor to do it. I started a paleo diet that's supposed to be healing for the gut, in case that is related to my problem, and grumbled about it, but mostly ate really delicious food. My hair grew back and I gained weight from doing zero exercise. I did intermittent fasting, and intermittent cheating on all the diet rules, especially when I was over-tired. I ate a lot of turmeric and sauerkraut and kale.

My favorite month was April because that's when I felt the least sick and I got to go for slow walks and wades at the beach everyday and sit on licheny boulders and watch the water and imagine I was swimming around with the cormorants. I spent a lot of time lying on the deck at home doing imaginary qigong and wiggling my toes around while looking at the clouds moving across the mountain.

I survived on Newstart for the second year, applied for and was rejected for the disability pension and spent far too much time listening to centrelink hold music to figure out how to appeal that decision.

I felt sad, bored, frustrated, scared, desperately missing all the joyful parts of life, and sometimes guilty and like a burden. I didn't laugh very much. Or do any of the things that used to make me happy, like swim, walk, ride my bike, or even have the energy to go and sit in the bush everyday and count plants like last year. Nor did I write on Facebook or this blog as much, because my brain has mostly been submerged under murky cfs sludge waters to varying depths. I prioritized my limited mental capacity to the essential communications of life and sharehouse living. (19 different people lived at my house over the year! This wasn't so easy for me, but I know that I'm not easy to live with either, and I am grateful to all the different housemates for putting up with my substantial limitations, noise intolerance and all the sick gloomy, grunty, grumpy grouchiness.)

But I was also surprisingly okay a lot of the time. My favorite feeling in the world has become 'not so sick', which happens some days, although the invisible energy boundary is always still there, with its severe punishment for crossing it. Some happy things were that our garden got very heartily mulched and looked after again because a previous housemate moved back in. It's looking really alive and good. And some lovely people planted natives on our front verge for me, including trigger plants, one of my favourites.

So yeah, 2017. Really not wonderful, but not terrible either. I guess I'm learning a heap more about life . About the vulnerability of human bodies, disability, loss and things not turning out anything like you'd hoped or planned or expected. I wish I didn't have to learn about this crappy stuff. Blissfully ignorant and arrogantly healthy would've suited me. But I'm also grateful to be okay and looked after and I still like being alive, because sometimes the cfs chains loosen and I don't feel so sick, and that feels really good. Or the winter sun or summer breeze is really warm and delicious, or the sunset behind the mountain is outrageously take your breath away stunning, our little cherry tree produces a ton of sweet red fruit, I hear the black cockatoos coming down from the mountain or the sound of a boobook owl from the forest amongst the frogs at night, or the air smells like rain. And that makes everything ok. I still might get out of this bloody sick body jail one day. (Although the things left to try on my list are getting more and more implausible and 'woo-woo'!) Maybe I'll be one of the lucky ones and it will just run its course. But it doesn't look like shifting just yet. I can't yet confront the idea of being sick like this for decades, but I can do it one day at a time.

One more happy thing is that I'm spending the last week of the year in a beautiful bush hut by a creek surrounded by wildflowers, tree-ferns, moss, native birds and pademelons, with a view of bruny island. It smells really good here and there's chirpy little honey eaters which makes it sound like the Tasmanian alpine country. It's really very nice. I have excellent friends.

All the best for 2018 everyone. Look after yourselves, remember to eat your veggies and have enough rests! Hopefully, whatever challenges or rude shocks we are delivered this year, there's plenty of joyful moments interspersed, and we can all do it one day at a time. xxxx Jen

Monday, 18 September 2017

Basket case

So this happens quite a lot.

It's not that I don't want to talk to people. It's just that when I stand up for more than a few minutes, I don't get enough blood to my brain and I can't focus on complicated things like words and language. Its a common symptom of CFS, called POTs (postural orthostatic tachycardia) or OI (orthostatic intolerance). I call it 'my being upright problem'. Its severity fluctuates with my other symptoms, but its generally been pretty bad for the past five months. I spend most of my time lying down, apart from when performing the essential upright tasks of daily living.

Feeling awkward about needing to act 'unusual' in public is a thing that many disabled people must come to terms with. Doctor surgeries or the welfare office (the only places I go outside the house) have been awkward for me, as I'm not even very good at sitting on a chair when my feet are all the way down on the ground. I prefer to sit or squat on the floor so my feet are a shorter distance vertically from my head. That's if I don't need to lie down.

I'm pretty sure the staff at the welfare office wondered if I was a basket case when I last had to go there. That day I was really sick, but there was no way out of that appointment if I wanted to keep my payments. I collapsed on the floor soon after walking in, and handed the attendant a note I'd written beforehand, explaining I was really sick, sensitive to noise and needed to lie down. But my body was malfunctioning worse than I had expected and I couldn't answer any of their questions. The three staff members who gathered around me didn't seem to know what to do, until my mum came in from parking the car.

Earlier in the year I had three separate dog walkers approach and ask if I was okay when I had to lie down on the grass in the middle of a park. My body couldn't make it the hundred meters to the beach that day. Of course it was an encouraging sign of community and human nature that they did so, but I really didn't have the energy to explain myself. And what does one say anyway? Yes but no, no but yes? I wished I had a little sign or note to show people. Maybe they thought I was drunk, drugged or mentally ill? "I'm not okay, I'm seriously sick, thanks for asking but there's nothing you can do. I might look terrible but I'm actually happy to be out of my house and close to the water for once. I just need to lie down".

Do other disabled people stay at home because they worry about what people think of them? I must admit at the time my largest worry was how I was gong to get back to the car, not what people thought of me. I wondered how many times I had made assumptions or been scared of unwell people acting strangely in public before? I know I will be more open minded and check my fear reaction in the future.

Because POTs is the most disabling of my symptoms, I've started taking medication that stops my kidneys excreting so much salt and therefore raises my blood volume. It might be helping. But not so much that I can say for sure. 

The inability to concentrate also occurs when there's other distractions, such as lawn mowers, music, other people talking nearby or strong chemical smells. 

Compared to a normal functioning human-being I am a bit of a basket case really. Or you could say I'm a crocheted beanie case. (I must have made at least a hundred over the past year). 

"When a given situation has no solution. It makes reference to someone who has lost their health and has no cure. It is said that people without cure to a mental disease used to be sent to a mental health care facility for life where they would manufacture baskets for the rest of their lives. " (the Urban Dictionary)

At least, despite my sometimes unusual appearance and actions, nobody has institutionalised me, and I still do have my mental health. I'm still okay. But I don't take it for granted anymore, like I used to take my physical health for granted. I consider it lucky that I'm still able to find beautiful moments, meaning, connectedness, peace and sanity in life, even with extremely limited mobility, and a physical illness that doctors can't cure. And I retain the ability to communicate my lucidity, and my struggle through the written word. 

Things could always be worse, and have been.

This talk of mental illness is very close to the bone for many chronic fatigue patients. Millions of people have been inappropriately treated for decades due to misunderstandings about the illness by medical profession. "Can't find anything wrong? It must all be in your head...." I am personally 100% sure this illness is not all in my head. But having an invisible, variable, chronic illness is such a mind-fuck that, even for me, doubt sometimes creeps in. I can't imagine how it would be if I did have a history of mental illness, or if doctors were thinking that I was just making it up to get attention. I am lucky to live in a time where patient advocacy has gathered enough momentum, and biomarkers for CFS/ME/SEID have been recently discovered by science, so it is far less likely I will be sent to a psychologist to 'cure' this invisible, physical illness.

In the meantime, come to think of it, basket weaving does sound like a nice gentle, contemplative past time achievable from the couch, floor or bed, while myself and other patients wait for the researchers to learn more about how to help us. So perhaps becoming a literal basket case shall be my next career goal. Stay posted :)

Monday, 14 August 2017

A snow day

There are two ways of thinking about what I saw when I woke up this morning. 

"Woooowsers, what a stupendously glorious snowy morning! Holy moly I'm lucky I get to see this crazy beautiful stunning mountain from my house!"


"If I were not stuck in cfs jail I would totally be up there already, one of the first people climbing up the zigzag track to the deserted, road-closed summit, taking in huge lungfuls of crisp frosty air, glowing red cheeks, snow getting into my boots, snow falling off plants down the back of my neck, eating snow and throwing snow, with a bum-sliding bag and a thermos of hot tea in my backpack. But no, I'm here stuck on the floor in stupid boring CFS land and I might never feel that sort of life-full joy again. Boo ." 

(Fun-in-the-snow day two years ago)

Yeah yeah. And I berate myself when I feel the second and not the first. For dwelling on what I don't, rather than what I do have. And then berate myself for berating myself, because shoulds are stupid, and distract you from living in the moment too. And I know that even if I were healthy, I might have to go to work, rather than go snow-playing anyway. Or one of the many other million rivulets life could take me down.

But what if I'm allowed to feel both of those things? And all the other things too? All the sad and happy and boring things all together at the same time? Because I'm a human and life ain't black and white and binary.

And yes this post is a backlash against the 'fix everything by positive thinking' bullshit that is all over the internet, and its insidious denial of reality. 

Because you know what? I reckon I am allowed. Yeah. So there.

However I do sincerely hope the mountain snow brings delightful joy and laughter to many others playing up there today! xx J

Sometimes CFS feels like jail