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.

One of my special places

This is just a couple of little love notes to one of my special places in the bush close to home, adapted from notebook scribbles taken when I was spending a morning there. If you know me, or know Hobart, you'll probably know where this is.

Ah gorgeous, vibrant, green lawn, cropped short by marsupials. A lacy, tufted fabric of orange, green and brown. Moss, herbs, and fresh pademelon poo, glistening in the morning sunlight. Sweet smelling, cool autumn air, warm sun and chirupping honeyeaters, busy on perch and wing in the forest. The mid-slopes of a crumbling, messy, dolerite mountain. This is what I craved this morning. Not the flickering black-hole of a screen and the internet offerings of superficial connection and endless distraction. Stiff green clumps of reeds, rustling their hard brown seed heads in the breeze. Dusty, blue-green paperbark shrubs. Shiny, khaki-leaved, yellow-barked gums. The eroded stone foundations of an old building, moss covered bricks and a historic rubbish heap with old broken glass. A micro garden of lichen colonizing a rock. Prickly pink mountain berry shrubs. I’m craving exercise because I’m wired, and I wish I could run up the mountain paths to dissipate the stress. But I can’t, and if I don’t calm down my nervous system, I’ll crash. So I’ll just sit and sit and sit. Wait out and write out the anxiety. Breath in the freshness of the air blowing in from the sea, feel as it plays in my hair. Touch the cool, dewy, moss-covered earth. Rest my eyes, face, voice and the communication part of my brain. Listen to the crickets. Be here, and now, on this wild island, half way up a mountain, away from the city, a deep pool of lemon verbena and ginger tea in my cup. 

…………………~~~~~~~~~…………………~~~~~~~~………………………

I often think of death in this place, as I once, unplanned, participated in a gory performance-art piece in the forest, just uphill from here. I’d just come to sit on my own, as usual, and was initially annoyed to be interrupted by the curators setting up their booth. It involved hiring some headphones and an iPod, lying on the forest floor and listening to an audio recording about the processes of decomposition that would happen to your body if you happened to die, right there, and not be moved for the next few thousand years. It was totally disgusting, deliberately confronting, and also quite lovely. Shit and stink, scavengers and rot. The bloating with gas and collapse of structure, the leaching of fluid, and the hatching, wriggling and feeding of fly maggots. The gradual spreading with gravity and the sinking back down into the land. Flying in the bellies of currawongs, scurrying low with the devils, feeding the plants. Molecules that were once you, popping up in bright, ephemeral wildflowers, swaying in the breeze, being spread in pollen by the nectar-seeking bees, and shooting skywards in long-lived tree trunks. Life to death to life again. Your skeleton sinking into the earth beneath moss and roots and soil. 

Afterwards I opened my eyes, still present in my warm, alive body, and saw, amongst the patterns of shadow and light on the forest floor, rotting leaves, seed pods, moss, lichen, an orange slime mould, twigs, rolled tubes of eucalypt bark, small tufts of grass, spindly miniature mushrooms that were a soft greyish brown colour, earth, mud, and tiny 2-leaved seedlings. I heard the call of a sky-bourn currawong and the chirrups of the busy honey eaters above. I looked up through the layers of the canopy, the big, lime-green swarths of cutting grass, the crowded, papery-grey teatree trunks, the splotchy colors on the gum trunks- dark salmon, yellow and peachy brown, and thought “that would do me”. If it were possible. A slow grave in the ground, rather than a blasting furnace of gas. And, thank goodness for the earth’s decomposers. 

Time to end the TCM experiment

This year I decided to give Traditional Chinese Medicine a proper go, where I wouldn’t give up after 3 or 4 sessions, because it was expensive and it didn’t make feel noticeably different in the short term (which is what I’ve done in the past). I accepted that it made sense that whatever is wrong with my body might take a more long-term, sustained approach to cure or improve. 

I started attending appointments in January. Initially they were once a fortnight, then she said I could reduce that to once a month. The practitioner worked out of a popular, local integrated medicine clinic, which is less than 10 minute drive away from my home, and has close, easy parking and level access - important accessibility factors for me. She was in high demand, hard to get appointments with, and an authentic, older Chinese lady.

My strategy was: no thinking, no questioning, no researching (and therefore doubting) her methods, just do what she tells me for at least 6 months. 

She diagnosed me each time by feeling my pulse for a few seconds. She gave me almost hour-long acupuncture sessions, with more than 20 needles. She prescribed expensive herbs and other supplements. These included multiple b12 injections, and PEA, an anti inflammatory supplement, along with some Chinese herbs that didn’t taste pleasant but weren’t overly disgusting either. Sometimes at the end of the treatment she gave me a painful little torture massage on various pressure points, and she also tried a bit of cupping, which I didn’t much enjoy. She was not very easy to talk to, and didn’t listen very well, but was quite nice, made cheerful small talk, and I assumed she was getting all the information that she needed from my pulse. 

Initially she talked about getting me fully better, saying things like “take this much until you are 50% better, then you can try taking less”. As a jaded patient, diagnosed with what is officially recognized as an incurable illness, for which many people have tried TCM before, I nodded and smiled politely and thought “well that’d be nice, and I guess you never know”, but did not put much emotional hope on her optimistic predictions. I thought “geez, if this can get me 5% better I’d be happy with that”. (My health was below the miserable line at that point). 

My body liked the acupuncture. I could feel myself instantly relax, and feel more balanced. I sometimes got stomach gurgles and tingles. (I think that indicated the parasympathetic nervous system was kicking in). But sadly I don’t think it had much of a positive effect on me for more than a few hours, or a day afterwards. (But at least it didn’t have a negative effect, like some other treatments I have tried, and put up with because I hoped it would have a longer term positive effect.)

She also prescribed a low histamine diet, which is a very boring diet. I did not follow it perfectly, but she said being 80% compliant was ok. So, especially for the first few months, I’ve ate far less histamine-containing and inducing foods than I ever had before, removing things like soy milk, spices, bananas, avocados, citrus, tomatoes, ferments and nuts from my diet, and I always froze rather than refrigerated meat. This diet was one thing I did research and felt skeptical about, as I don’t fit any of the symptoms of histamine intolerance except for “fatigue” of course, which is a symptom of everything. I did have a big inflamed bee-sting when I first saw her, and I think this was partly why she decided I should follow this diet. Over time I became lazier with the diet (especially with tomatoes, cheese, chocolate, nuts and sauerkraut), but I did give it a good crack earlier on. 

Why was I spending my time, energy and money trying something that has never been shown to cure me/cfs before? In Jacinta Parson’s book “Unseen”, she talks of the unspoken “contract” that chronically ill and disabled people have with society, to keep trying to get better, rather than just accept and live with our level of impairment. I understand this can be quite offensive to some, especially when paired with unsolicited advice about yoga and kale. And its true that I do feel some pressure to demonstrate to the world that I eat well, meditate and regularly try various treatments, to prove that my inability to recover is not my fault. But for me, it’s not just peer pressure. I really, really want to get better for myself - even if it’s just 1%, just to get me above the miserable line. And of all the woo-woo treatments, TCM has been around for the longest time, is individualized, and is relatively highly regarded. I generally apply a plausibility to cost matrix to my treatment experiments.

\

(Of course reality is not as clear-cut as this diagram, and there actually isn't anything actually plausible in the field of available treatments for me/cfs, but there is fully implausible and less implausible!) 

10 months later, I was better than I was before I started seeing her. But it hadn’t been a continuously upward trajectory. I was back above the miserable line by April, but not much changed in my health after then. And I’ve been much better before during my whole “me/cfs journey”, without any TCM, (but for what reason, I do not know. It might be the passage of Jupiter, as my friend Millie says, tongue in cheek). 

I spent almost $2000 on the experiment. I felt neutral about continuing apart from the cost. “Maybe I’m just near a break through, I can’t give up now”, I thought. Then I realized that is the mindset of somebody playing the poker machines, and I had already continued the experiment for four months longer than planned. I could easily spend that money on something like massages, or delicious stinky cheese. Neither will never promise to cure me, but I’m guaranteed to enjoy them more than acupuncture and no-flavour diets. Or save the money in case a real, proven cure comes along one day and is not covered by medicare. Or donate it to research to bring that potential treatment closer. 

In the end, my decision to end the experiment was made for me, because the practitioner left the clinic due to the vaccine mandates. And anyway, I think I gave it a good enough crack. I’m not sure what’s next, but I will probably keep trying things here and there, until there is nothing feasible left. 

Here's me trying to do a shrug emoji selfy 🤷‍♀️🤷‍♀️🤷‍♀️

Day of awareness for severe ME/CFS

It was severe ME/CFS day last week (the 8th of August), and this week the 40th birthday of a lovely friend who has had severe ME/CFS for over a decade. We met at uni in our early 20s, in the in the mid 2000s, and bonded over our love of native plants, went for many plant-appreciation bushwalks, and also worked together on an ambitious project to build a community sustainability demonstration centre, with strawbale building, community garden, food co-op and pizza oven. Nowadays she is confined to a darkened room and completely dependent on her partner and ageing mother to take care of her.

My friend and I building the sustainability centre and planting the first crop of garlic in the community garden, around 2008.

Even though I am often frustrated with my limitations, and very sad about the things I can no longer do, comparing my capabilities with the 25% of ME/CFS patients who have severe ME/CFS and are completely bedbound, makes the things that I can do seem exceptionally & tenuously precious.

For now, I can drive myself to nearby places, walk a few hundred meters and sit on a rock by the estuary, or in the bush amongst the spring wattles. I can read books, write and connect with people on the internet. I can talk with my housemates and have occasional visits with friends. I can crochet, eat most things, stand up long enough to cook for myself, water my pot plants, manage my own finances, shower and live independently. Even at my worst I can drag myself outside onto the deck to watch the clouds move through the sky and feel the breeze on my face. These are precious, precious capabilities. I don't take them for granted, and I live in fear losing them from a long-term crash.

 

There are young people living in nursing homes, people stuck in darkened, quietened rooms, tube fed, unable to listen to music or read, and unable to communicate with anyone as their pain and brain fog is so extreme. Some people are virtually comatose, yet they are conscious and aware of their lives passing them by. Their quality of life has been compared to terminal, last-stage cancer patients, yet their suffering is ongoing for years and mostly unseen by society or the medical profession. The suicide rate is high. And still the diagnostic tests find nothing wrong with them.

This post is to acknowledge their strength, spirit and suffering, and to ardently hope for more research funding and meaningful research breakthroughs as soon as possible.

Nancy Klimas, a doctor who has worked with both HIV and me/cfs patients has said this: 

"My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you, if I had to choose between the two illnesses in 2009, I would rather have H.I.V."

Here is a link to a video about severe ME/CFS (8.5 minutes). https://youtu.be/CTxwlf7LSrA

For more information, a short book on ME/CFS was recently published called The Puzzle Solver. It's available in the Hobart state library, and tells the story of Whitney Dafoe, a very severe patient, and his father Ron Davis, a renowned genetic researcher, who now focuses all his research on ME/CFS. It also tells of the decades-long struggle by countless patients and doctors for the disease to be taken seriously. The Puzzle Solver - Wikipedia. This article provides a good summary of the book, with pictures. A geneticist’s biggest challenge: Curing his own son | Coronavirus pandemic | Al Jazeera

Research into the disease in chronically underfunded, and the patients are often not well treated by medical doctors who understand it poorly. Here is a graph of funding for ME/CFS compared to some other diseases: (Source: The Male Pattern Baldness Disease? Chronic Fatigue Syndrome's Chronic Lack of Research Funding - Health Rising)

Whitney Dafoe recently began trialing a drug which has enabled him to communicate a little more, and send messages of hope to the ME/CFS community. I visit my friend in her darkened room once a month or so, and she tells me tales of the family of Tasmanian pademelons, native hens and other wildlife she can watch at out her window at dusk.

These two people may be inspiring for their ability to find beauty and hope in life, despite years of imprisonment in very sick bodies, but any research breakthroughs that would enable them to live in even 1% less pain, with 1% more ability would mean the world to them.

Donations for ME/CFS advocacy and research in Australia can be made to Emerge Australia. Donate - Donate | Emerge Australia.

Ron Davis's foundation is called the Open Medicine Foundation. They recently discovered a method to diagnose abnormality in the cells of ME/CFS patients, but were declined a grant to further develop this technology to be available in doctors clinics. Donations to the OMF can be made here: Ways to Donate - Open Medicine Foundation (omf.ngo)

Finally, if anyone knows any GPs and can share with them, Emerge Australia has partnered with ThinkGP to produce a two-part accredited online education series based on best-practice clinical information to assist health professionals to accurately diagnose and support patients with ME/CFS. GP Education Program | Emerge Australia

Thank you for reading

(This is a Tasmanian pademelon in case anyone was wondering!)

5-year CFS annivarsy blog post part 2

Ok, ok, here a few more words. My last one was so short, because I feel like I’ve said everything already.

Credit: the internet (?)

Basically, my life is like this meme now, except with fatigue. 

And instead of ‘make it stop, make it stop’, it’s ‘let me out of this stupid chronic illness prison!’.

 

But mostly, meh, I’m used to it. This is my life now. 

It’s been five years and the longer you have this illness the lower your chances are of ever recovering. Getting sicker again last year, after two years of exceptionally slow and not-always steady improvement, was hugely disappointing and hope crushing. 

But overall, I’m still okay. 

I have never once thought “Why me?”. I’ve always thought that was a stupid question. I don’t believe in fate, or god, or at least that sort of God who has an influence on the small-scale events of the world. I’m an agnostic tending towards atheist, but hesitate to lock-in atheism because existence itself is an incredible, unexplainable miracle, a gobsmacking mystery we will never fathom. 

God or no god, I think the concept of ‘deserving’ something is inherently invalid and needs to be put in the bin. Also the platitude that god or “the universe” is trying to teach you a lesson to make you a better person, is rubbish and codswallop. You can learn valuable lessons from crap if you're not too traumatized, but nothing is “meant to be”. Although I would very much like to know the scientific explanation behind ME/CFS, I don’t believe there is any universal plan or reason. It’s just a particular version of shit that happens. Life and health is a fragile thing. Grief and loss will come to every person, in an infinite variety of shapes and forms. If I could trade in my life, for a randomly chosen life of anyone else on the planet, would I do it? No way! Chances are I’d get a much worse deal than this. And for all the shit that me/cfs is, it’s still my life, and I’ve gotten quite attached to being me. 

(Here is a more recent selfie than in my last post, which was taken I was actually only 17 - and who doesn't miss their body from 21 years ago?)

I’m going to keep missing my previous, exuberant, healthy life, sometimes more painfully than other times. I’ve got more times ahead of loneliness, frustration, miserable sickness, stress, grief and loss. When more shit happens (bushfire, and death of friends or family are the events I’m scared of most), it will be compounded by the fact that there’s nothing I’ll be able to do about any of it, not even go for a walk to clear my head. I feel very vulnerable  and I don’t know how I’ll cope, but I’ll figure it out at the time, or at least endure, one day at a time.

Maybe I talk about my me/cfs too much on social media, but I’m not constantly sitting around feeling sorry for myself. I’m very aware that there’s much to be grateful for, and things could be a lot worse. But also, my disability is significant. And the massive hooha that people made over temporary covid19 lockdown last year validates the fact that this is challenging. This is year six of me/cfs for me. I’m facing lockdown for the rest of my life. With extra periods of miserable sickness on the side, and without the ability to exercise, garden, or even do my own laundry. 

I don’t idolise healthy life - the stress of a career, the hectic pace of life. I don’t idolise having a relationship, or kids. In fact, I probably do the opposite and grinch a bit about them in my head, to try make myself feel better about being indefinitely disabled and single, and not realistically able to hope for these things. (It’s not necessarily the most generous mindset, but also relationships and parenthood are often romantically glossed over in the mainstream media). I don't think I’m  jealous of healthy people. If I see a person running or cycling by my house, I just miss that feeling in my own body. I do get a bit grumpy when people complain about being ‘stuck in town’, for say, a week, without going on an outdoors adventure. But, that’s exactly what I was like before I got sick. I thought that I needed to be off doing things all the time and squeezing as much adventure and joy into life as possible. Sitting still was boring. I am grateful for the lesson in humility, patience and slowness. I did not know my own health privilege. 

I’m going to keep trying “treatments” in the hope of improvement, even though they are most likely a waste of my time, energy and money. At the moment I’m trying a Chinese medicine practitioner, and I’m committed to giving it a go for six months before I assess whether it's useful for me. (The acupuncture seems to have a good temporary effect, but I haven’t noticed much overall benefit in 4 months so far.). I’m fortunate to be able to afford this probably futile experiment. 

There are still diets and bla bla that I should try. But also, f*&^ diets. I already eat really well most of the time, I already have a very restricted life, and I resent the weird relationship with food that stupid diets impose on me. Especially because different people are equally passionate about raw vegan,  or 100% meat diets being able to miraculously cure all ills. The TCM practitioner has told me not to eat any fermented foods, yet the internet is full of people saying they cured their autoimmune diseases with sauerkraut and kombucha. Who to believe? 

I’m 100% confident that if my health does improve, I won’t be held back from re-entering the world by fear or deconditioning. These will be factors, but I know I love doing things, and that being sick and in cfs-prison sucks. My third most heartfelt desire (after world peace and global environmental restoration) is to be well enough to be able to go for a walk in the bush again, or hang out with friends without constantly worrying about being destroyed for days from spending too much energy laughing too much.  If I start to get better, it will be an obvious feeling in my body. It will feel like “not feeling sick”. And I’m patient and experienced enough to know how to test the boundaries of my exertion tolerance ridiculously carefully and slowly. Writing this paragraph seems a complete no-brainer, but it’s not unlikely I’m going to have to explain this to another doctor in the future, who does not fully understand that me/cfs is a real physical disease and in my case, not at all correlated with trauma or mental health issues. (Sighs deeply, bangs head against imaginary wall, screams internally, feels betrayed, belittled and devalued by the medical system). 

In the meantime, I keep figuring out how to live within my limitations. This year I was approved for a library book delivery volunteer, who is much older than me, and also has a limp - a visible disability compared to my invisible one, so I feel awkward about that. But thank you to the state library and community volunteers for being wonderful!  And I’m applying for the NDIS, which I feel weird about too. But I actually am too disabled to do many things for myself, and I would be up shit creek without help from my parents and friends. 

So yeah. Five years. Shit. But there are still many wonderful things about my life. Friends, the garden, the mountain, books, dogs, when I get to go sit by the sea, and grey fantails that make cute little trills and do crazy aerial dances chasing insects above the treetops out my window. So, I’m alright. 

Here is a particularly magnificent sunset from the other night. 

Have I said anything new? 

5-year CFS anniversary blog post

What the hell happened to my body? 

What the hell happened to my life? 

HOW HAS IT BEEN FIVE YEARS?????

A friend had a baby in the year I got sick, AND NOW SHE'S FIVE. 

Holy crap. 

Here's an old photo of me bushwalking in South West Tasmania. 

Things were supposed to be like this for a LOT longer. 

I miss it a lot.