2023 wasn't remarkably different to the year before, and perhaps barely deserves a blog post. But I think it's still a valuable practice for me to reflect on the year, and try to articulate that in words, even if there's nothing much new to say.
It was my 8th year of Chronic Fatigue Syndrome. The fact that my circumstances have barely changed is also a good thing, as it means nothing has gotten worse. (Cheering emoji!! ). And looking at my step graph, I think I can finally declare I have recovered from the 2020 crash. I can now "go for walks'' again, even though they are always short, flat and slow. I am incredibly grateful for this ability. (Touch beautiful, beautiful woody trees, in the bushland near my house).
(The dip in graph in the middle of the year was a mysterious stomach bug where I went to the emergency department to get checked for appendicitis. This was my worst day, even though the doctors and nurses were so wonderful and kind. The indeterminate waiting for 6 hours in the bright, loud room whilst feeling rotten with a tummy bug, was awful).
I have now had the little van, the snoozuki, for over a year, and it has definitely expanded my geographical range. I went on trips to the stunning East Coast, Cockle Creek and the Peddar dam, among other shorter trips. Less stuff to pack and unpack, and being able to climb in the back for an insta-nap without needing to do any setting-up is incredibly enabling.
Inconveniently, I recently discovered it is possible to lock myself out of the van, at 10:30pm when I got up for a wee. But, I was SO relieved to learn this was possible in a nearby location that was relatively easy to hitch-hike home from (only 15 minutes away). (And that I am a person who wears clothes to bed!). I cannot walk far at all, I need reliable sleep and my body does not have the resilience to cope with mishaps much worse than this.
Every day of the year I had too much to do and not enough energy to do it. The basics of being a human continue to take up most of my capacity. Co-owning a house requires never-ending maintenance, from figuring out what for do about the precariously leaning brick fence and retaining wall, to fixing leaking toilets. The constant dance of sharehousing requires awareness and management of multiple people's cleanliness standards, communication skills, neurodiversities, knowledge, past traumas, experience (or lack of), and triggers. Including my own. But it's been mostly good, and I feel outstandingly fortunate to have a home.
I continued to receive help. Lovely people turned up to another garden bee in October, and mum came every week to help with some more strenuous chores like changing my bedsheets. I had enough support. I am thankful. Not everyone with chronic illness does.
The impact of cfs on friendship is a topic I might expand on in another post. My experience of friendship has definitely not remained the same. However, I still feel really lucky to have enough friends. One friend in particular came on almost all my camping trips, where she happily occupied herself doing jigsaws and looking for bugs under bark, while I had naps or went on gentle walks. She is the best.
I kind of co-created a book. I wrote a Facebook post several years ago, of my observations from a few hours spent at a local beach, and Lu, a talented illustrator, who I met through the me/cfs facebook group, was inspired to illustrate it. We sold copies to friends to raise money for Emerge Australia, a me/cfs support and advocacy organisation. Here is a link to the pdf. Donations to Emerge Australia are welcome.
In other small-scale good news, I had quite a lot of swims and some snorkels, including one where I saw a huge orange octopus. I read over 100 library books and shared my reviews online, listened to some podcasts and watched some good tv. (I especially enjoyed meeting Gina from Alone Australia via the tv. What a woman). I sold some beanies to raise money for good causes, organised some group-birthday-gifts for friends, and I stitched another plant-dyed quilt. I took a lot of photos of our mountain looking pretty, and facilitated the growing of a lot of silverbeet, zucchinis and broadbeans in the garden. I discovered the best sausages ever at the farmers market, where they also sell the best cheese, carrots and empanadas. I finally tried out a hired electric scooter (stand up), but it took too much energy. I continued to do daily yoga and bush sits, exceeding my sit goal of thirty minutes a day by 35% and coming short of my yoga goals of one hour a day by 15%, but I was mostly very disciplined. I also did a lot of slow breathing. This nervous system requires a lot of management!
I sold my last bike and some other outdoor adventure gear, which was a bit wrenching. I still get frustrated and sad at times, and have occasional flashes of incongruity. "How is this my life now?". "The last time I was here I climbed that huge mountain with a 25 kg backpack. How is this tiny slope an insurmountable barrier now? I don't even look sick!" I sorely miss the endorphins and stress-release of exercise. I worry about the continued impact of this enforced sedentary life on other aspects of my health. I get pangs of sadness that cfs has not only eliminated my chance of having kids, it has also vastly reduced my ability to interact with children at all (who usually require a lot of energy and are inevitable germ super-spreaders). Or my chances of having a relationship. (An inquiry into how the real limitations of my disability, vrs the ableism of society, vrs my own internalised ableism affects this possibility, also requires a more in depth post.)
I am more vulnerable to anything that veers off-course in my carefully managed life. From events as minor as dishes-conflict in the sharehouse (I cannot easily leave the house to gain space and perspective from conflict, or exercise to deal with stress), to as major as the potential of natural disaster, where people with disabilities ARE statistically more likely to die. People have commented how prepared I am for bushfire evacuation, but I have to be. I cannot rush, I cannot run. (Here is an abc article on this featuring two friends.).
At the same time as feeling utterly robbed by cfs, and despair for my diminished life, I know I have gained a sense of perspective, and heightened sense of gratitude for small things. I'm proud that I have not become bitter about my lot, and I think the daily gratitude practice helps with this. That, and that I DO have enough support, and am currently existing above the miserable line. (A good attitude only goes so far when your circumstances are rubbish).
I didn't try any treatments or diets, other than going on and off ldn. Nothing to report there. I'm still too disillusioned and burned out from the expensive and fruitless treatment marathon in the first few years. And long covid research hasn't come up with the goods yet. (Oh okay, one thing, only because its kind of funny. I tried vibrating my acupressure points for digestion with a small, cheap sex-toy. This has had a noticeably positive effect on my friends digestion, and it did briefly improve my own IBS symptoms, before I gave the borrowed vibrator back after I bought my own. Sadly, mine doesn't work as well. Maybe the vibes aren't right).
A commentary on 2023 seems callous if I don't mention the state of the world. So, yeah, Shit. I do not know what to do or think about the wars, the climate change, the unsuccessful Voice referendum, or all the rest. I imagine how unbearable life would be in these disaster zones for anyone, let alone those with disabilities or medical conditions.
Anyhow...., back to me.
I reckon if i counted up the words in my daily gratitude diary, the two most common phrases would've been:
1. "Being okay", and 2. "Was able to....."
The majority of the year I had enough food, money, shelter, stability, support and safety. Enough lack of pain, stress-free time, autonomy, humour, wonder, mental health, and time sitting on the ground in nature. And even if a thing wasn't particularly fun, I was often grateful that I could do it. (Something like fixing the toilet would come into this category!).
(Also "dogs", on any day I met a dog).
So there we go. Not much new to be said. But I have perhaps been more than okay. I know that I remain a very fortunate sick person to have had enough of all those things listed above, and I am very grateful. If you were a person who supported me this year, a really big thank you.
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