Two Oh Two Two

2022 was, as hoped for, fine and fairly uneventful for me. I don’t think I have any new life insights, or major news to share. My me/cfs is kind of old news now, and nowhere near as interesting as it was back when it was new, even though I was having a much more terrible time back then. I don’t even know why I am writing this post. Mainly because I have done so for the last few years. For myself, I guess, to look back on. People my parents' age still snail-mail each other Christmas letters with their annual news. Nowadays I think we are either meant to catch up in person, or deduce what people are up to via their infrequent Facebook posts. My blunt dad says he couldn’t care less about the news from his old friends from 30 years ago, but I’m a curious person and I would like to hear about people's lives. (But I guess I’d be more interested if they contained authentic news and thoughts rather than curated highlights). Anyhow, here is my not-all-rosy Christmas letter, to the ether. 

In 2022 I had no personal calamities, although several occurred in the community, affecting people I know. Death in a light plane crash. A suicide. Devastating floods. The Ukraine war. Seven previously fit and healthy people I personally know who had their year, and perhaps lives, greatly changed by long covid. Stark reminders that life can change or end in an instant. 

The year started with a lot of covid panic, as our state borders had just opened. But anyone who hasn’t had it now is a rare case. Despite our best efforts of isolating an infected housemate, I caught it in May. It was very miserable, but I returned to my baseline after three weeks, which I think was fortunate, especially when looking at this poll my friend did on the impact of covid on people with me/cfs (Pie graph of results below). As an immuno-weirdo, perhaps I should have isolated myself more strictly, but it was pretty hard while living in a share house - I wouldve had to change my entire housing situation. . 

(This is the results of a poll of 158 people done by my friend Garth in December 2022)

It was my 7th year of me/cfs. Is there a point where I’ll stop counting the years? Probably not, even though it mostly feels like it’s “just my life now”. I was sometimes sad, frustrated and lonely because of things I couldn’t do in the restricted-energy prison. But not as acutely as I was in the first few years. And I was mostly above the miserable line in health. I have been experiencing a general upward trend since the big 2020 crash. (If only I knew what caused that, and how to stop it happening again!) I was able to get out of the house to go sit in the bush when I needed to, to escape bad-habit ruts and stagnant thinking (more often than not caused by too much time on the internet).  I had the battery power to go camping several times and feel sated in my thirst for outdoor time and outdoor swims. I had enough energy to start doing some gentle core strength exercises, which helped improve my bad back. (After covid, being upright without pain suddenly became impossible after years of my body getting weaker). I maintained several one-on-one friendships, went to some events, made lots more beanies and made what might be the most beautiful thing I have ever owned: a plant-dyed woolen quilt, fragments of which were dyed at a week-long beach camp with a bunch of excellent and talented women. I have done all my own shopping, cooking and have begun to do some of my own laundry again, although mum still helped a lot. A relatively good cfs year. 

How 2022 compared to the years since 2017 when I started gathering steps data. This graph is the two-week rolling average of my daily step count (which correlates pretty well with how well I am feeling), but it has the step numbers when I stayed at flat places for a few nights halved - as my usual home is on a steep hill. 

Just this year's data, one-week rolling average, without the 'flat place bias' flattened out as in the first graph All the spikes are when I was camping, and you can see when I got covid in May. 

Although I enjoyed the event, I felt the loneliest the week after I went to a friend's 40th birthday, 2-night camping party. This was partly because every year I become part of an increasingly small minority of childless people, let alone single people. And partly because that weekend I was well enough to be able to experience a glimpse of my old self, who was much more social than I am able to be these days. Comparison is the enemy of contentment, I guess. But overall, as I have probably written here before, I’ve discovered that you don’t need as much health as I previously thought to be happy. The initial adjustment is hard, and you need a certain amount of ability, and to be not too sick and in pain to be okay. Other privileges, such as enough money, good social support and good mental health also help one cope with better illness. I still feel like a very lucky sick person. 

This year, for the first time, I tried no treatments! Zero diets! I ate the most bread and gluten since before I got sick. It was delicious. (How good are eggs on toast?) I was feeling just so burned out after trying to figure stuff out for myself. Have I given up on getting better? Or have I released myself into freedom from trying mostly bullshit treatments? I don’t know, but I have not yet recovered the motivation to get back on that train. (This blog explains some of the stuff that many me/cfs patients try to figure out for themselves, with no professional help. It's seriously hard)

I did a big cleanse of some unused outdoor gear, and clothes that no longer fit due to cfs weight gain This was confronting. I wear loose clothes and I don’t weigh myself, so I haven’t been monitoring the incremental weight gain from almost 7 years of no exercise. Even though for most of my life I have been very resistant to a lot of the very-bullshit expectations that are put on (mostly) women's bodies, I haven’t been immune to those about weight stigma. However, this year I read some powerful anti-diet, anti-body-shame, body-positivity books that were a good anecdote. This mindset is something I want to continue to develop. (The books were: Just eat it Just Eat It - Laura Thomas, PhD | Registered Nutritionist | Wellness Advocate (laurathomasphd.co.uk) and Body Positive Power Body Positive Power: How learning to love yourself will save your life by Megan Jayne Crabbe (goodreads.com)). 

Big pile of clothes I tried to find new homes for: "size 12-14 outdoorsy hippy dag lady" 

I got asked on a date. Or at least a “I’d like to get to know you better do you want to have lunch” invite from a man. I currently have no regrets about not going, but I wasn't sure if I was just being a scaredy-cat at the time. It was someone I was vaguely interested in getting to know better, due to the context I met him in, which is a cause dear to my heart. And it’s been a very long time of zero romantic anything in my life. (So long that if I stated the figure, some might assume I was talking about months, rather than years!).  Although there are benefits to being single, I often feel lonely, and going on dates seems to be the main method of opening oneself up to that possibility, even if many don’t work out. But at the time I honestly had my energy budget booked out for the next month and I guess I wasn’t interested enough to cancel other plans to make it happen. I said “sounds good, but cfs is the boss of my life and I can only do about three things a week, on top of looking after myself, and I’m all booked up for the next month. I can be in touch after that”. Then after that I was extra tired for a few weeks, and then after that I just didn’t really want to and saying a proper “no” felt like a relief. He’d only seen me make brief appearances at this organization, where I was able to appear relatively healthy and normal, before fleeing home for emergency rest to avoid crashing. The idea of having to explain how I am constantly micromanaging energy, plus how I sometimes experience unpredictable crashes, to someone who may not get it, and may want or expect more time and energy from me than I can afford, feels too hard. I need somebody who instantly understands, and preferably someone who I also instantly feel comfortable with. I already have too many friends who I don’t see enough, who I really value catching up with, and who don’t make me nervous and drain my energy with any awkward “dateness”. So, though I don’t have regrets in that particular case, I still wonder if I “should” prioritize some time and energy for this pursuit in my life. But even a good experience might take too much energy. I dunno. It’s still in the too hard basket. 

The scariest thing I did was take the plunge to buy a little Suzuki van with a bed in the back. A generous friend of a friend lent me his van as a trial for a week, which enabled what was one of the highlights of my year - my first trip to Freycinet National Park in over 7 years! It was stunning. I loved

gazing at the Hazards, which I think have a presence and beauty as significant as Uluru; sitting on a clifftop overlooking a large expanse of ocean and watching the whitewater crash against the rocks and kelp beds below; seeing all the wildflowers; and hearing the pobblebonk frogs.

                                    The granite Hazards at Freycinet National Park

I’m not yet sure if buying my own van is a good thing - or one that was worth the $7500 I spent (the most expensive thing I have ever bought besides half a house! and the extra petrol it uses. It was very hard giving up my little 22-year-old, reliable, efficient and very dented Baleno - which I was very attached to, as it had become my most valuable mobility aid since becoming disabled. The new van and I have had four nights together so far, and I think things are looking promising. But obviously rushing around having adventures is still something I have to take cautiously, even though I now have the ability to instanap anywhere. We will see. 

Little van under the black wattles on the Tasman pensinular

So, me/cfs life 2022? Not what I would choose, but it’s what I have, and I’ve been lucky enough to have just enough energy, luck and other privileges to have a good year and to be okay. There were lots of little, every day, good things. Having good, generous, talented friends. An easy share house this year. Delicious food. Solid shelter. Adequate sleep. Lots of top-quality library books. Clouds on the mountain. Yoga. Garden produce. Not living in a war zone. Not being flooded or burnt down. Still being here. 

                    Alpine orchid at Mount Field - easier to spot on slow walks than fast! 

My old yoga teacher shared this poem, about being simultaneously being okay and not okay.

For When People Ask

by Rosemerry Trommer

I want a word that means

   okay and not okay,

  a word that means

devastated and stunned with joy.

   I want the word that says

  I feel it all, all at once.

The heart is not like a songbird

   singing only one note at a time,

  more like a Tuvan throat singer

able to sing both a drone

   and simultaneously

  two or three harmonics high above it—

a sound, the Tuvans say,

   that gives the impression

  of wind swirling among rocks.

The heart understands the swirl,

   how the churning of opposite feelings

  weaves through us like an insistent breeze,

leads us wordlessly deeper into ourselves,

   blesses us with paradox

  so we might walk more openly

into this world so rife with devastation,

   this world so ripe with joy.

Seeing the tall trees at Mount Field this year was a highlight. 

Plant dyed quilt

Camping with talented friends in a freezing paddock in the middle of winter

Selfie at Fortescue Bay