Sunday, 2 January 2022

Twenty twenty one

Evening skies over kunantyi on the second last night of 2021

It seems to be that since the beginning of my life with me/cfs, almost six years ago now,  I have made a blog post at the end of each year, as a way of reflection. I don’t think I have a long post in me for 2021, as it was mostly, mercifully, uneventful. My life is mostly what I do on a day to day basis to manage my illness, which I wrote about in this rather long post a few weeks ago.

Facebook popped up a memory in late November, which lent me to reflect on this post I wrote, five years previous, when I’d only been sick for 8 months and was struggling to adjust to the comparative loneliness and boredom of my new, chronically ill, mostly housebound life. (BTW: Only 8 months, haha, who gets sick for a whole 8 months, let alone 5 years and 8 months and counting!?! Anyhow…..). The first year of my illness, which, although I could do more than I can now, and I had more realistic hope of getting better, was probably the worst mentally and emotionally. Plus I hadn’t yet practically arranged my life to be able to live well with at least 95% reduced physical ability, and nor had I learned to recognize the very subtle signals in my body when I reach the edges of my safe-energy-envelope (illustrated in this post) and to pace myself as much as I needed. But since that first year of what was literally, a horrible crash course in me/cfs, I’ve had a softer relationship with emotions like lonely and bored. I had another realization earlier this year that I not only must I accept and not fight these emotions, but I actually need them. Or at least, I need an uneventful life, with plenty of alone time. My body can’t handle much else without getting sicker. Therefore I grateful for a mostly uneventful 2021.

As per custom, here is my yearly steps graph, which happens to correlate pretty well with how well I am feeling, and also 25 nice things that happened, because I don't think you can go wrong with a gratitude practice.


*See notes on how I made this graph at the end of this post


ONE. As visible on my graph, I am better than this time last year, and no longer below the miserable line. I got sneezed on by a small child in winter and caught a horrible cold/flu, which is the obvious spike down in August. It was a particularly snotty, awful one, and I suffered multiple sleepless nights coughing my lungs up, but eventually recovered, and luckily it wasn’t an overall setback. I’m SO grateful that I'm well enough to be able to leave the house again, I can mostly do my own grocery shopping and can go spend time in the bush again.

TWO: A week spent camping, swimming and looking at weird and wonderful things washed up on the beach at Bruny island in February, mainly with Millie and Garth and some resident dusky robins. Due to Garth’s illness (also me/cfs), which began over 13 years ago now, this couple are very experienced at fatigue-friendly outdoor skills like camping in the one spot for a week, whittling sticks, playing tin whistles and scrabble, reading, bird watching, making secret fairy gardens for children, people-watching, painting and beach combing. 

Sam, myself and Garth all have me/cfs (1 year(?), 6 years and 13 years). Boo! Sam and Garth's partners bought them silly-looking banana lounges from the tip shop and Garth is sitting on my thermarest chair. 

THREE: A week at Dodges Ferry in April, playing with the then 7-month old baby of my old housemate Matty and his partner Kayla, watching her very determined (and funny) efforts to crawl. I was also able to go in the ocean every day, and even, exhileratingly, do a bit of body surfing, which turns out you don't need a huge amount of energy for. (Being in the cool water gives me a boost too).

Home-mountain kunanyi, from a beach far away

FOUR: A small visit to the magnificent mid-east coast for my friend Shelley’s belated 40th birthday in May, where I hadn't been since early 2016. I saw the actual sun rise (the big bright ball of gas emerging over the ocean horizon, as opposed to pretty colours on the mountain), hooded plovers scuttling along the sand (cutest little birds ever, very endangered), I went in the ocean three times and got washing-machined around by the waves, and had an outdoor bath in dam water under the stars. It was a bit too far of a distance for such a short time, and I was exhausted and wobbly 2/3rds into the car journey (even as a passenger), but it was beautiful all the same, and worth the recovery time, which thankfully wasn't too horrendous.

Not the exact beach we went to, but similar.  I miss you North east Tasmania! )

FIVE: Going to the Mt. Field government huts three times, with friends, for fagus season (deciduous beech), snow season and waratah season. These cheap and rustic huts are about an hour an a half drive from my house, and once there, one can partake in activities such as napping, fireplace gazing, sitting on lichen-covered, dolerite rocks wearing lots of warm clothes and getting mountain weather blasted in your face, and hanging out with your favourite Tasmanian alpine plants. 

 I walked all the way around Lake Dobson on the third trip of the year!! I've only been able to do this 2 out of my 7 trips to Mt. Field since me/cfs, so its quite a feat. It is so so pretty. 

Tasmanian waratahs

SIX: Going to Swansea for a few nights with my friend Qug in September, which is peak wattle yellow-floral-explosion season. We saw Freycinet peninsular from far away (I miss you Freycinet), a whale jumping in the bay also far away, and she saw a spotted quail thrush, which has been a  lifelong ambition of hers, so she was delightfully excited. 

Thanks Qug and her covid Tassie travel voucher!

SEVEN: Living in the Tassie bubble with almost no covid to worry about for most of the year (until now, arrrrghkk). We had one three-day lock down, which didn’t affect me much, except I was upset I couldn't get into the Waterworks Reserve for my bush sit because the gate was shut, and wrote a grumpy facebook post about how it should be an hour of daily outside nature time, rather than "exercise" to be more disability friendly. But then I found a nice new different spot to sit in anyway, where there weren't even any imaginary, annoying, red-faced, sweating, puffing and panting exercising people to glare at me or call the police for not legally "exercising" under their particular ablist definition of exercise. Things, however are a lot more uncertain and scary now, with borders having opened December 15, the end of lockdowns, the new variant and waning vaccine effectiveness. (A situation to be taken one day at a time).

EIGHT: Having a relatively easy response to the covid19 vaccine, which I was nervous about, being an immuno-weirdo. I was prepared for a week of being bedbound and feeling disgusting, but that didn’t eventuate. After the second shot I mainly just slept for 14 hours, which was actually pretty good.

NINE: Getting an electric blanket. I've been a Tasmanian since I was 3 years old, but this was my first ever electric blanket. I recommend it! Also on the topic of warm things in winter, I tried a couple of saunas this year (we have one under our house, installed by the previous owners), which I hadn’t tried since the first year I got sick and I way overdid it when I decided to try and cook the Epstein Barr virus out of me, but just cooked myself into greater fatigue instead. This year I went much more gentle and it was quite nice. 

TEN: Eating really delicious food almost every day, like broccoli, hazelnuts, lemon, chili, garlic and haloumi, potatoes, local blueberries, stinky cheese and chocolate. 
Looks boring, but I'm making palaaak paneer from garden greens from scratch! Still grateful for my ability to cook for myself. 

ELEVEN: Getting more massages. This was a decision I made at the start of the year. I feel a bit embarrassed about how indulgent this is, but hey I am old enough nowadays AND financially comfortable enough to do this very nice thing for myself, and besides, I get very little physical touch in my life, and most of the things I used to enjoy (and spend money on) are no longer possible. The massages need to be very gentle to not stir up any stuff in my lymph system that makes me feel sick, but I've found a regular therapist who is good.

TWELVE: Eating delicious produce grown in the garden like tomatoes, beans, peaches and greens. Yum!

Thank you garden and people who have helped me look after my garden!

THIRTEEN: Having a working bee in my garden in October where lovely people came and pulled out tons of grass, uncovered my pigface flowers and planted a waratah and tomatoes. 

Look at these lovely humans! Yanti, Ink, Amity, Andrew and about 6 others. 

FOURTEEN: Reading lots of books and getting a library delivery volunteer, which took the stress away from asking friends, or figuring out how to get myself to the library. At a guess I reckon I might've read between 100 and 150 books, as having lots of horizontal time is my CFS superpower, and luckily I still have the brain-power to read. I like books.

FIFTEEN: Getting solar panels on our house in June, and watching the graph of solar production gradually increase as the days have gotten longer. (I like graphs).

SIXTEEN: A pretty good sharehouse vibe, no-one moved out and we didn't have to find any new housemates! Lots of talking shit and laughing in the kitchen, and also being respectful, quiet and tidy.

SEVENTEEN: Not being in constant pain, and being able to find pleasure in everyday things like breeze on my skin, furry dog pats, my daily delicious decaf coffee, winter sun and summer bare feet on grass. Very fortunately I don't have fibromyalgia as well as ME/CFS, and since I went back on the pill, my monthly endometriosis pain has gone down from an unmanageable 7/10 to a manageable 2/10, so I don't care what any hippies say about the pill, I think its great. (I did try a good 6 months of expensive naturopathic supplements for endometriosis a few years ago, but my pain kept getting worse and worse).

EIGHTEEN: Seeing a platypus in the Hobart rivulet.  

(There is no platy in this picture as I didn't have my camera out then, but there is is a very handsome duck on the lush, green banks of the Hobart rivulet)

NINETEEN: Going to an accessible yoga for chronic illness classes. And continuing to do daily yoga at home. I like yoga.

TWENTY : Getting a really nice new thermos so I can sometimes have my morning decaf coffee in the bush.

TWENTY ONE: Continued help from mum with laundry, changing my bedsheets and in the garden. Life would be a lot harder without her support.

TWENTY TWO: A present from my dad of a book about all the family history he’s been researching the last few years.

TWENTY THREE: Hearing boobooks and tawny frogmouth in the bush out the back, all the little birds in the garden (wrens, fantails, robins, spinebills, honey eaters, thornbills), and participating in the annual Aussie Backyard Bird Count. 

TWENTY FOUR: Trying out a new daily slow breathing practice before bed. My lungs and my nervous system think it feels good.

TWENTY FIVE: Spending a week in December in a bush cabin owned by some friends at Neika with some really cute things, like baby pademelons, skinks, pink robins, cascading boronia flowers and a creek.

I don't often share selfies, but here is my face, December 2021, 38 years old, in a forest in Neika. 

On reflection, it may seem like I did a lot. But it seems that mostly I was just at home in bed, lying on the floor with my legs up the wall, napping and reading books. I didn’t make much art or play my piano this year. But I had many more naps. I tried a Traditional Chinese Medicine experiment (report in link), some B12 injections and some new supplements, but I didn't notice any significant differences. I checked in with my regular doctors and repeated some blood tests, which found nothing new. My main achievement, if I can even claim any credit for it, was not getting worse, and in fact getting a little bit better than a year ago. I paced myself hard and introduced compulsory afternoon naps. But it was also the unknown forces of cfs that allowed it. 

Thank you to all the friends who drove me to, carried the heavy stuff, or otherwise facilitated the out-of-town adventures: Millie, Garth, Kayla, Matty, Lizzie, Yanti, Joy, Gaby, Qug, Sam, Maya, my parents, and my housemates for watering my extensive plant collection when I was away. 

It was a pretty reasonable 2021, and I’m also hoping for a mostly boring, but reasonable 2022 too :) 



*This graph is the 2-week running average of my total number of steps per day, as measured by a wrist band. It doesn't measure the incline of the steps, or my total energy expenditure, or any other exertion, like whether I do purely restorative yoga or try a few very minor strength exercises, whether I go in the water for a snorkle, or if I struggle to take the lid off a jar, or how much social energy I expend, so its not perfect. On the days where I was staying away from my on-a-steep-hill-house, at a flat place (especially when camping with the toilet a far walk away), I have decreased the amount of steps by half. However despite its imperfections, the steps graph is probably the best visual depiction I have of how well I am feeling. Below is a graph of the raw data of the steps just this year. All the spikes are where I was staying somewhere flat away from home for a few days.

Also, for graph-lovers (like me), here is a bonus  "number of days I went for a swim" graph, since records started when I started keeping a 10-year diary in 2013. 

 I made this graph, because going for swims (in natural water bodies, never in chlorine swimming pools) is one of the most happy and joyful things I do - both pre and post ME/CFS. It shows that before I got sick in early March 2016, I went for lots of swims all year around. (Winter swims in 2015, pre cfs, were particularly numerous, as I spent 5 weeks bushwalking in the Northern territory. And swims they were rather low in Feb/Mar 2015 as that's when I had a bout of pre-cfs fatigue). Winter swims are now non-existent, and swims all round less frequent, but at least summer swims can still exist. January 2021 was kinda crap, but February, April and May made up for it, and the latest summer is off to a good start.  (By the way, by 'swimming' I mean, getting submerged in the water, not doing laps or anything). 

Ok, bye for now :) 

Me swimming in Lake Dobson December 2021 :) 

Wednesday, 22 December 2021

Missing and multiplicity

This post is about the one ability and one of the places that I miss the most. It’s also about how although the missing is sometimes very painful, I’m still okay, and how often contradictory things can be true at the same time. 


After almost 6 years, maybe I should be used to this new life of chronic illness and dramatically reduced physical capacity, but sometimes I still feel renewed shock and fresh grief about parts of life that have been cut off from me. I think these episodes will probably never completely fade. 

I really miss the places that my healthy body (albeit along with the help of some fossil fuels) could take me. Specifically, I miss places such as Cradle Mountain, which I used to think of as my second home, as I had worked there on and off since 2003. I miss my familiarity with its ecology. It’s burrow-dwelling wombats and beady-eyed, big beaked currawongs. It’s diverse flowering heath, meadows of coppery coral fern, and golden, bobble-headed buttongrass plains. It’s deep, tannin-stained lakes, glacially sculpted peaks and astonishingly red waratahs. It’s dark green King-Billy pine forests and crepuscular platypus. The smells, sounds and the feeling of being there. The sweetness of unpolluted wilderness air, the butterscotch taste of scoparia flowers, and the constantly refreshing wind, sun, clouds, rain and snow. The feeling of wild aliveness, when literally living high on mountain trails amongst boundless space, far away from roads and cities. 

Places between Cradle mountain and Lake St. Clair (leeawulenna), along the 80km Overland track, that I trudged for five seasons as a ranger and many other times as a guide or just on my own recreational trips, come to me in my dreams a lot. Often just before sleep, a particular segment of the trail flashes up, in poignant, fleeting detail. 

The old, soft, wooden boards in the mud, just after the bridge on the trail into Pine Valley, where you leave the pink mountain berry scrub behind as the forest type deepens and darkens, and it’s like you are entering a different world. 

Descending from the rocky lookout, through the grove of tangled fagus to the valley of Lake Windemere, and passing the old, squat, twisted, sentinel of a snowgum. 

The crunch of quartzite under boots, the sound of a shallow stream and the rustling of pandani foliage when traversing the rim of the Waterfall Valley cirque. 

The roaring of the waterfalls, the flitting of swallowtail butterflies through the sassafras, and the dappled sunlight where the deep pools of the Mersey river are shaded by myrtle beech and arching Diselma pines. 

The wattlebirds guffawing at Pelion Plains and the bluish tussocks of poa grass, heavy with raindrops, brushing wetly against my pant legs. 

The fermented smell of the cider gum sap and herby wallaby poo on the marsupial lawns, where the Narcissus river spills out into the long, deep, mountain-rimmed lake of leeawuleena. 

Places I will likely never see again. 

And I miss the feeling of a fit and healthy body. 

How strong and sure footed I was. A miraculous self-regulating system, all contained within my frame. My mitochondria generating boundless supplies of energy, my breath puffing and panting, heart beating, skin sweating, muscles stretching and contracting, endorphins flowing, hands and arms adjusting the straps of my pack, the rhythmic play of balance with feet, legs, pelvis and eyes, taking me forwards, steady and human-paced, across the winding and rocky landscape. 

I miss the act of walking, even along the cement pathways of suburbs and cities. Walking was my daily friend, my joy, and it was my coping mechanism for life’s difficulties. Maybe it’s a little like losing a partner, who was many things to you, including your everyday companion, someone with whom you sometimes shared wonderful adventures and who was also a support in challenging times. After losing them, you enter uncharted hard times, compounded by the stark absence of your primary coping mechanism. 

Big, big, fat sigh. 

But, as I always say, I’m okay. Shit happens, and we keep going. And I’m always ready to defend the multiplicities and complex shades of grey within me, and within all of human experience. 

I can be struck by excruciating, unfulfillable longing for what I’ve lost, and at the same time, feel gratitude for what I still have. Gratitude, even, for what I’ve gained in compassion, calm and acceptance. 

I can sorely miss the highs of joy from mountain climbing, lake swimming and physical touch. But also know that I am better at being content now, with a stiller, quieter life, and at noticing small, everyday pleasures like the grass beneath my feet and the breeze upon my skin. 

I can know that many people have health problems far worse than mine, and/or have much less support, yet still be distraught at my own misfortune, and regularly astonished and frustrated at the size of the gap between my previous capacity, and the tiny energy window I have available now. 

I can be devastated that I lost my health when aged only 33, yet amazed how lucky I was that I got to be so well for that long. 

I can hate my house for being a prison that I’m stuck in, and also love it for being a place of refuge from the exhausting stimuli of the outside world. 

I can yearn desperately to get better, and also employ some grace in the acceptance of here and now. 

I can be grief stricken and terrified by the fact I will probably have this disease for the rest of my life, concurrently hugely daunted by the slim prospect of re-entering society if I were to undergo an unlikely recovery, and mostly confident I would be able to handle either scenario, if taken one day at a time, even when some of those days are shitful. 

I can feel surly and jealous of people who can still enjoy a physically robust relationship with life, yet entirely happy for them at the same time, and would never wish away their fortune. It’s true that when I come in close quarters with someone who has what I miss, the highlighted contrast can play havoc with my equanimity, whether they are reveling in it or taking it for granted. But I can’t be truly jealous of younger people, as I was disgustingly healthy when I was their age too, living life to the fullest and only vaguely, theoretically aware of my able-bodied privilege. And nor can I be truly jealous of older people, because not many humans get to age without being wrested through the wrangles of their own particular losses and grief. 

I was thinking of composing a post about these multiplicities within human experience for a while, then feminist author Clementine Ford did so, when her home town of Melbourne was going back into lockdown this year. Although the reason for, and the apex of her missing was on different things, she said it so eloquently, that it seems superfluous to try and say the same thing myself in different words. (N.b. If anyone thinks this author is too controversial, then maybe you should actually read her books, not the lies spread about her).


".....I miss my friends. I miss being devil-may-care about things. I miss flirting with people. I miss touch and kissing and will-they-won't-they eyes across the room. I miss the thrill of possibility. And at the same time it feels petty to feel those things, especially as the world burns. Afghanistan is in crisis. Lebanon is in darkness. West Papua is under siege. The climate is fucked. We are so lucky, comparatively. How dare we feel any kind of grievance with out lot! Except we do, and that's okay. We can hold multiple feelings at once. If we don't let ourselves feel that multiplicity, we'll tie ourselves up in knots and be no good to anyone. It's okay to feel sad and bereft. It's important to acknowledge privilege and luck. It's not a moral failing to want things to be different, for everyone. We can hold all these feelings at the same time, because we're complex, human beings. Martyrdom helps no one. Honour your grief. Cry. Rage. Bargain. Feel overwhelmed and helpless. And then get to work. "

But, of course, in my case 'getting to work' means having a nap! 

Sunday, 12 December 2021

So how do I spend my time these days with my chronic-fatiguey self?

 Looking back at my diaries from 2014, pre-cfs, these are the sort of days I used to have: 

Wed April 22 2014: “Early morning kayak from Sandy Bay to Taroona & back, and swim. Study/lesson planning. Lunch with housemates and friend. Mow the lawn. Tidy downstairs. Ride to town for dinner at V.K. and music at W.I. Ride home”. 

Sat Sep 6 2014: “house cleaning in morning. Ride to community garden working bee and AGM at Source. Went for walk to top of Mt. Nelson. Ride to friends bday party at W.street. Walked my bike home”. 

Crikey I jam packed a lot into my days! But what does my day-to-day life look like nowadays, in times of extreme energy rationing, with less than 5% of the battery capacity I used to have? Well, besides maybe lunch with a friend on a good day, I can’t do even one of those things at all. But at the moment, my life, although much slower, is not terrible, as I am back above the miserable line. (Below the miserable line is when I am too physically sick to be equanimous about anything. I just feels disgusting, I can’t do anything enjoyable and it sucks. Above it, life can be okay). I can’t leave the house every day, but I can a few times a week. I can go sit in the bush, do my own grocery shopping, and occasionally visit nearby friends. I’m very grateful for this capacity. 

There are two things I am very disciplined about doing almost everyday, as long as I’m well enough. These are one hour of gentle, easy, mindful movement in the form of yoga or qi-gong, and a sitting meditation for half an hour. I believe these routines are essential for maintenance of my physical and mental health, as my nervous system gets very easily stressed, tightly-strung and overwhelmed these days, just from being alive and upright. I need dedicated calm-down time. 

I wrote about meditation in this post last year. It’s something I started experimenting with a few years before I got sick, as several people that I admired did it. In summary, even though sometimes it feels like a chore and I get epic pins and needles, I miss it when I don’t do it. 

I used to need to do vigorous exercise for at least an hour each day, or I felt like crap. Now I can’t even go for gentle, flat walks for more than a few hundred meters, but on all but my sickest day’s, I can do yoga. I started doing yoga when I was 21 and used to go to a class once a week. I really like yoga and it’s nice to have the time to do it every day now. The discipline encompasses a very wide range of exertion - from almost zero effort in restorative sessions, to hardcore stuff that was way beyond me even when I was above-average fit and well. Restorative yoga is basically lying on the floor in a few different positions for around 10 minutes each, like legs up the wall, supported child’s pose or reclined butterfly. I do this a lot. Even when my practice is slightly more active, I’m still very careful never to do anything that raises my heart rate very much. I’m mostly on the floor, just gently wriggling about, moving all my joints, stretching, and doing things like cat-cow or child’s pose. Doing a very slow sun-salute is only possible on a very good day. I often use an internet app, or look up YouTube videos, with search terms such as “yoga for sickness, yin yoga, gentle bedtime yoga, chair yoga, floor based yoga”, and I’m pretty good at adapting poses to my energy level. (Here's a post about some poses I do). When there’s an accessible class near me, and I am well enough, I still try to go to a studio once a week, for the atmosphere and in-person instruction. I’ve been to a few “yoga for elderly” classes, and there’s currently a class running for chronic illness, in my suburb, with close-by parking and no stairs to the studio. (The holy quad of accessibility!) Qi-gong is also nice. I learned some simple sequences off YouTube, and it is more suited for outdoors practice, as it doesn’t involve lying in the dirt with the jack jumpers. However I only do it when I’m well enough to stand up for half an hour or so. Often I practice it in my imagination when I need to calm down from being wired. I think it’s partly the slow breathing that helps, which is another practice I am trying to introduce into my day. I’d also Iike to try more feldenkreiss, but I can only leave the house so many times a week. 

Ideally my energy, the weather and the whereabouts of my housemates permits me to do at least one of these practices outdoors, as daily outside time is also very important for my mental health. Feeling the ground under my feet, the air on my face, or the sun in winter can make or break a day. In theory I will go outside in all types of weather, but it takes more energy to put on all the gear when it’s raining, so I don’t always achieve it. 


This year I have also introduced a strict rule about having a nap every afternoon, or at least a lie-down without any screens or books. I use an weighted eye pillow and usually listen to a body scan (yoga nidra) meditation through my headphones. 9 times out of 10 this turns into a nap, even if I didn’t think I needed one. I also need to sleep for at least 9 hours each night, and I don’t get up early, so in general, being in bed takes up a fair bit of my time, and I’m pretty slow in waking up and becoming a non-grumpy schlomp after naps and sleep too. 

Everything else I do in a day needs to fit around those things. There’s usually enough energy for one extra thing a day, but not every day. 

My next priority is cooking, cleaning up after myself and grocery shopping. Shopping can be outsourced if I get sicker, by a combination of online ordering, and asking my parents and housemates, but I like going to to the shop to choose my own food once a week. I live five minutes drive from the corner store, which is much easier than the supermarket or the weekly farmers market. I still try to shop as low-waste as possible, bringing my own bags to the local bulk wholefoods store and my own containers to the butcher and I make my own oat milk and nut butter at home. However I buy most of my clothes and other shopping online nowadays, as although I feel guilty about buying new things, going regularly to op shops and the tip shop to rummage for treasure has been beyond the energy budget. 

I also actually like and value being able to do doing my own cooking, but I usually make a big amount and freeze some so I don’t have to do it every day, and I’m prepared with a stash of frozen meals in case I have a crash. My share-house job is cleaning the toilet and sinks, which I can do, and I get the housemates to do the more vigorous tasks like vacuuming and taking out the bins. The ability to do my own laundry fluctuates, and is mainly difficult because the washing machine at my house is downstairs. Currently my excellent mum visits weekly, and does it for me. Although I probably could do it myself at the moment, that would be the only thing I could do that day. Not having to allows more time for my next priority, which is bush time. 

I am so much happier when I well enough to go spend time in the bush. I’m very lucky to have a car that I can drive, and to live in Hobart that has lots of beautiful, accessible and varied bushland, all less than ten minutes drive from me. I can’t walk more than a few hundred meters from a road, so my places can sometimes be annoyingly noisy, but it’s usually not too hard to find a private nook for a few hours of bush-time. I often take my morning snack and a thermos, my old yellow camping mat to sit on and my notebook. I do my daily sit or my qi-gong, and I enjoy time away from the internet and my house, where my thoughts can be more spacious. My cabin fever dissipates. I listen to the sounds of creeks and birds and I just look at all the beautiful messy, variety and delightfulness of nature. Being forced to be really slow in the outdoors has been a positive of my chronic illness. 


Gardening is another thing that I like to do, but the thing that I most often accidentally over-exert myself doing. I have a bunch of pot-plants (many natives), because I am a plant nerd, I like to grow tomatoes, zucchinis, beans, herbs and greens, and I try to look after a strip of natives on the front verge. My house co-owner looks after the rest of the garden, including the mini orchard and chickens in the backyard, and I think he rather likes that I don’t interfere, and that he gets control over most of the garden nowadays. Gardening (and dealing with the harvest) is probably a little ambitious for me, and I usually need help, especially in spring when the weeds go nuts. Mum helps when she visits, I occasionally ask friends to help, and I have hosted a few larger working bees too, where I organize food for afterwards. I feel a bit awkward about this, as I know that my friends, even if they are healthy, also have weedy gardens and chores and overwhelming lives, and maybe I should try harder to get the NDIS and a support worker to help with my gardening, or just pay someone out of my disability pension. But receiving help from friends is also very heartening and a lovely way to hang out. And my friend Millie is always tells me that people like helping. So I haven’t appealed my NDIS rejection, but if I don’t get any better, I will have to at some point in my life, as my mum won’t be a fit and healthy 66 year old forever. 

Sometimes I write, or make art and sometimes I don’t. I have made hundreds of beanies since being sick. Sometimes I play my piano, or ukulele, and sometimes I don’t. I don’t force it. Last year I did a lot more. This year, after last years big crash, naps have been a bigger priority. 

I read a lot. This is a nice thing about having lots of time. Books are great. This year I have a library delivery volunteer who visits every three weeks. I get books I put on hold myself, and some random library selections chucked in too. I struggle to keep up. I write reviews of the interesting ones for Facebook. 

I usually watch tv in the evenings, on my tablet. Since officially moving out of my parents house in my second year of uni, I have never lived in a house with a TV, and I took pride in that, and never missed it. There was just so much to do, and I didn’t know how anyone had time. Arrogantly, I thought that only boring people watched tv. Now I watch an hour most nights, maybe more in winter and less in summer. I just watch free-to-air stuff on ABC or SBS, and it’s quite entertaining and just as good as books. It is a good low energy thing to do. I am not ashamed. I’m grateful for people who make good tv. Movies are usually a bit long for me. I don’t podcast so much at the moment. I’m not sure why. I sometimes try to squeeze one in when cooking. 

I maintain friendships, which is not always easy with my me/cfs and my friends’ habits of having babies and buying houses far out of town due to rising house costs. Some friendships have fallen away. I’ve had a lot of time to ruminate on friendships lost, including some even before me/cfs, and how culpable I was in that. Maybe I was a bad or unthoughtful friend, or maybe we just drifted apart, as people do. Still, sometimes surprisingly to me, despite my absence from most multi-person social events, and mostly being stuck in my house, I still have enough friends. I miss that we can’t have wilderness adventures, or volunteer doing community projects or even laugh and be silly as much as we used to anymore, but I’m not lonely. I feel very lucky. I’ve even made new friends since cfs, mainly through my housemates. I live in a share-house, which can be a source of stress but is pretty functional at the moment, and there’s always a lively chat to be had in the kitchen.  I’m usually quite relieved when everyone is out, but I like having them around in general. (My perfect housemates have day jobs!). 

I have Facebook friends. Social media is a weird modern phenomenon that didn’t appear in my life until I was in my mid 20s. It has its positives and negatives, but I do appreciate the discussions, banter and advice. I think it helps me stay relevant and have a voice in the world, despite being mostly housebound.  I even have some friends I never met in my previous life. And there’s some that I did, but we never hang out in person anymore. I imagine having a chronic illness would’ve been very isolating, and practically difficult, before home-internet and social media. But it’s also addictive, and I wish I knew how to spend less time on it. Faffing around mindlessly on social media takes up too much of my time, when I could be watching clouds, making art  or reading more intelligent things. It impacts on my ability to think clearly and concentrate. When I’m away from the internet I never miss it. I deliberately don’t have a smart phone, so I don’t take the internet out of the house with me. 

The last few years I’ve been able to go camping once or twice a year with friends, which is a blessed internet-free, in-nature, on-ground time. I am so much happier camping on the ground than in any fancy hotel. But I can’t do this on a whim, nor on my own. I need assistance, careful planning and to start pacing out the packing at least a week prior. But although it doesn’t happen very often, it does happen, due to a couple of good friends, and it’s usually the highlight of my year. Even when I don’t have a job, holidays are great circuit breakers, for getting out of the rut of being stuck at home. And usually we go to the beach in summer, where I can go in the water and wallow about, which I love to do, and cool water is good for my body. Sometimes I can even go snorkeling, which is excellent. I have ambitions to go swimming more during summer whilst l’m at home, but the distance of the drive to the beach often thwarts me, as do the bees that visit our large backyard frog-pond (which used to be a swimming pool). I try to spend some time at my parents house over summer, who live much closer to the beach, but summer is also when my garden needs to most care, so it’s a conundrum. 

Chronic Fatigue Camping Club! 

I don’t have a relationship. After an almost ten year relationship, I was single for a few years before cfs, and I still am. “Dating with cfs” is a very common topic in the me/cfs Facebook support group, as many people are lonely. People are quick to share their partner-meeting success stories, but maybe not so their failures. I try not to think about it too much. I don’t think it’s impossible for me to meet someone, it’s just very, very unlikely. I don’t have the energy for physically going on dates, nor for the emotional intensity of a new relationship. Social energy expenditure is really tiring for me, even with old friends who I’m not nervous around. I have wondered if being sick is an invalid excuse for bowing out of what was always an extremely scary, yet supposedly ultimately fulfilling, and almost ubiquitous quest in our society, to find a romantic partner. It was terrifying and time and energy intensive prospect even before I was sick, and back then I had less reason to doubt my value as a potential partner. But usually I come to the conclusion that my illness is a very valid reason. I really don’t know how I would fit dates into my schedule of naps, yoga, basic feeding myself, and bush time. Sometimes I’m sad about it, but there’s goods and bads to being single. I don’t get much physical touch in my life. I don’t have one go-to person for all my needs. But I don’t have to worry about being a burden or constantly letting anyone else down when my illness takes an unexpected turn for the worse. I don’t have to smell anyone else’s farts in bed. And I’m definitely happier single than being in bad relationship. 

A lack of human touch doesn’t mean I don’t have get to feel pleasure in my body. I get pleasure from the breeze on my skin. From winter sun. Bare feet on grass and cool water in summer. Sometimes I pay to get massages. I often long for a dog, for uncomplicated love, simple joy and furry cuddles, but I’m really not well enough to care for a one properly. (Sometimes I think the worst thing about being single is that I have no one to help me care for a dog). But luckily I’m not completely dogless, as my housemate has a part-time dog he shares with his ex partner. She’s a kind of aloof, cat-like dog, who doesn’t much like cuddles and definitely doesn’t love me as much as she loves her main two people, but she does put up with me patting her sometimes, especially if it’s a belly rub. 

Pre-cfs I was lucky to be able to work and save enough for a deposit a house, two years before I got sick, in a co-ownership arrangement with a friend (the dog-owning, gardening housemate). It’s not the perfect house for living with cfs (mainly because it’s on a very steep hill), but it ticks a lot of boxes such as winter sun and a glorious mountain view, and I feel very lucky to have a relatively secure home. Before I got sick, it was a bit of a rambunctious share house, with a regular gatherings of friends, a stream of couch surfers, daily shared meals, and arguments over chores and overwhelming piles of dishes, but I’ve made changes since then, and have new criteria when choosing housemates, so now it is much more sedate and tidy. 

I don’t work. I receive the disability pension, and also get a bit of money from renting out rooms in our house. This is still below the minimum wage, but I am single, childless and relatively frugal, so I am financially comfortable. I know how fortunate this is as a disabled person, or any person really, in late-stage capitalism. To be honest, although it was very difficult to get, a guaranteed income is one of the benefits of my illness. I feel nervous saying this, as it seems like I’m happy about having a disability and being a “leaner not a lifter”. But I wish everyone could get it.  My previous work was mainly seasonal and casual work as a ranger, bushwalking guide and ecologist. It was fun. I had considered the idea of continuing study in ecology, but it seemed a pretty insecure and competitive employment path, especially if I wanted to stay in my beloved home state of Tasmania. Guiding is physically hard and can’t be done forever either, so that is why I decided to study teaching in 2014. I had just completed my Dip. Ed. before I got sick, and although I was pretty daunted about starting this career path, I had a plan to start slowly and build up classroom experience with relief work. I am aware that I probably liked the idea of teaching more than the reality. I like people, I even like teenagers, and I like learning cool stuff. But I imagine the real job would’ve left me extremely exhausted, especially in the first few years, from the emotional labour, the late nights and the beaurocracy. So, to be honest, while I also feel guilty saying it, I sometimes feel like I dodged a bullet. 

Some people say they miss having purpose in their lives. But I’m ok. I sometimes wonder whether I should try to find a way do more as a volunteer for our poor, stricken world. But also my illness makes me very unreliable, and I’d rather not end up having to let anyone down. I see my job at the moment is to do the best I can to not get sicker, which means extreme pacing, and essential self care tasks. And I research treatments, and dutifully go to appointments, not yet giving up that maybe one day I might find something that will help. Managing a sharehouse takes time too.  And a friend told me early on that sometimes the world just needs people to sit still and watch how beautiful she is. So, that’s my job too. 

So, that’s my life, when I’m above the miserable line anyway. I know it’s a fragile balance I have, and many things could easily disrupt my carefully managed routines and energy budgeting, and knock me out of equilibrium. But it’s okay for now. Sometimes I’m content and happy. Sometimes I’m discontent and sad. Sometimes I think the ratio of one of these emotional states to the other might be the same as before I had me/cfs. There’s a theory we all have a set baseline happiness level, that we return to after good or bad events happen to us. Sometimes I think that’s just a lie I tell myself to make myself feel better about the drastically reduced health situation that I cannot change. Often I do feel quite lucky to be able to lie down in a beautiful piece of bush, with nothing to do and nowhere to be, rather than be stuck in a potentially stressful workplace with a hundred and five things to do. I also know if I had a magic button to end my me/cfs I wouldn’t hesitate to press it. Even I know my life wouldn’t be perfect and there’d still be plenty of times of frustration and discontent, at least I’d be able to go for walks. To go back to some of the wild beautiful places in Tasmania that I deeply miss. I’d be able to hang out with friends and laugh freely without worrying about the payback period. And I’d be more confident that I could deal with any natural or personal disaster or disruption.  

But, as I said, my life is okay for now. My final essential ritual each day is a written gratitude practice. Three happy things. So to end this piece, here is some examples from a week this spring: 

Thursday: Beach time. Looking at different types of washed-up seaweed. Eating silverbeet from the garden and feta in pastry. 

Friday: Beautiful misty rain, hearing frogs and black currawongs, the pink rhododendron in the garden flowering it’s nut off. 

Saturday: Dog pats. Abundant garden greens. Forest in the rain time. 

Sunday:  Very good & long sleeping. More mist, fog, clouds & sun prettiness. 

Monday: Meeting a very nice old friendly whiskery dog in the driveway who came over for a pat. Apple blossoms. Hearing the housemates be excited by the landcare conference.

Tuesday: Time spent at the Springs. Drippy moss, crescent honey eaters and flowering hakeas.