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.
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 :)
.............................................................................................................................................................
EXTRA SECTION FOR THE GRAPH NERDS
*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. 
No comments:
Post a Comment