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.
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.
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