An essay about my uterus

This will be the last time I am folding these up. Soft, clean and dry. It was always a nicer part of the monthly ordeal. A sense of relief, that I made it through and there would be a few weeks of reprieve. 

I will be getting the bloody, bleeding organ, my uterus, cut out sometime in the next few months. After years of being pretty large, but stable and not causing any major symptoms, the fact that the fibroid tumours have doubled in size since a year ago means there's no other option other than a full abdominal hysterectomy. And although surgery right in my guts is a bit terrifying, it can't come soon enough. I've been increasingly uncomfortable since March, especially when lying down. I have to get up regularly to walk around to ease the pain, so my sleep has been rubbish. Plus there's a 1% risk of cancer that I'd like to be clear of. 

I bought my first reusable cloth pad from a health food store when I was 22. I still have it, although it's not my favourite. It has a red towel that you need to fold up and reassemble, which can be tricky to achieve without lumpiness. But it dries quicker on the line than some of the newer, thicker ones. As a teenager, I was so impossibly embarrassed of my period that I couldn't even say the word, let alone imagine hanging the evidence on the line for anyone to see. But in my first sharehouse, my housemate told of hanging her pads up to dry around her bed in youth hostels while travelling. As a young environmentalist, I was inspired to walk the talk. 

I wonder if I should be more sad about my hysterectomy. A friend facing the same predicament is sad, even though she's closer to the average age of menopause than I. Neither of our wombs got used for their purposes. We didn't experience the miracle, joy or pain, of growing another human inside of us. But me/cfs has already made me come to terms with not having had a baby, so this is not a sudden shock. Sometimes I will feel sad about my childlessness, and the type of family and experiences I will never have. And sometimes, like when I see your kids being very loud and hectic, I will be relieved. Definitely in the context of me/cfs, I'm grateful I don't have small people to look after. 

Period undies didn't come on the market until much later in my menstruating life. I think they are great, particularly the huge overnight ones, as lying down means blood can leak in many directions rather than straight down into a pad. I experienced many stained bedsheets and pyjama pants before I got a pair, including one morning when I didn't realise I had a massive bloodstain on my pants until after I had spent a significant amount of time scurrying up and down the street in the wind, rescuing rubbish from a blown over wheelie bin. But if you're not a light bleeder, pads are easier to change than a whole pair of undies. The undies are also usually black and don't give the visual feedback about when they've reached capacity, until things just start feeling a bit, well..….wet. I used a cup when bushwalking and travelling, as I wasn't as brave as my first housemate, and no inconvenient laundry was required. But I always hated the ins and outs (the suction!), and there was also no visual feedback until you felt the trickle of the overflow. 

It would have been a lot easier to exist as a person with a uterus and ovaries if there was greater societal understanding and acceptance of periods. And also less stereotyping of women as the weaker, less capable sex. Things have improved since the 1990s. A lot of people have raged against the patriarchy more fiercely and bravely than I, and how it has made us feel so much shame for a natural biological function that, unlike growing a beard and getting a deep voice, is essential for the continued existence of the human race. Back when I worked, I wouldn't even admit to my female colleagues I was struggling with pain as I didn't want to seem weak. Let alone to men, who may have been disgusted, or at least made very awkward. And it's still pretty weird to share what's going on in your underpants-region with someone you're not close to, no matter how much you're affected by it. 

I sometimes wonder if not slowing down on the days when I was in the worst pain contributed to me developing me/cfs. During my last season as a track ranger, the first day of my period consistently coincided with the first and biggest day of my shift. There didn't seem to be a way around this. So I just chugged the maximum dose of ibuprofen, tried not to vomit, and pushed through the pain that the drugs could never fully dull. At the time I wasn't, but for most of my menstruating life I took the pill. This made bleeding predictable, and significantly reduced my pain from perhaps a 7-8/10 to a 2-3. Unlike others, I was lucky the pill didn't cause me any mental health issues, but I couldn't take it continuously and I still bled most months. Taking the pill and even taking painkillers is something I have sometimes felt judged for. But it is a hollow judgement from anyone who hasn't tried living in this rigid, capitalist world where you have to earn money to eat and keep a roof over your head, while a ferocious beast rages in your insides. The drugs were a cheap and reliable method of suppressing symptoms that otherwise would've kept me suffering in bed for multiple days every month. My experiments with alternative health were expensive and ineffective. 

From what I've said above, it would seem like a no-brainer that I won't miss my period. The pain, the mess, the logistics. But, also, I'm not 100% unequivocal about it. The sensitivity to the world I felt during bleeding was kind of sweet. On days that I could rest, doing gentle yoga felt amazing, like my whole body singing out "yes, pay attention to me!". And it was a unique relationship with pain, as although it was debilitating, it held no fear and I knew it would pass. It was certainly a ride, and an often exhausting one, not to mention the irrational mood swings when not on the pill, and ovulation pain being an extra bonus that no one warned me about. Every month, for 30 to 40 years, is a lot. If I could redesign evolution I would reduce women's cycles to 4 times a year. And if I could redesign society I'd eliminate the medical negligence that has dismissed our pain, denied access to care, and dragged its heels on research needed for seriously debilitating conditions. I would also allow women to take all the rest, and dare I say it, "sacred time", they need during their bleeding. 

I know some hippies like to mark a girl's first period with some sort of ritual or celebration. My awkward teenage self would have been mortified at any such attention on me, my changing body and especially the events in my genital area. Unlike in the Judy Blume novels, my period was not welcome. I didn't want to be a woman. Periods just confirmed to me that it was a massive dud deal compared to being a boy, on top of the silly and unfair gender roles imposed upon us. However I would've liked to have felt less shame. Perhaps an acknowledgement of the grit and toughness needed to endure menstrual cycles would have been good. And earlier access to the knowledge that toughness and pushing through isn't always the wise choice. Often that is softness, surrender, care and compassion. 

It's a fairly major surgery I'm having, as the fibroids are too big for the keyhole option. There's a few unknowns. Whether I get to keep my ovaries or not, and therefore if I'll go into immediate menopause. Or if I keep my ovaries, what will cycles, and also perimenopause, be like without the main player? Will they find evidence of endometriosis that could explain why my periods have been so painful ever since I was a teenager? How much will my cfs prolong or complicate the recovery, and how big a crash might it cause? Might it improve my fatigue to be rid of such a problematic organ? (Wishful thinking probably). Having a major operation like this is scary, but we also live in a blessed age of anaesthetics and sterile surgical implements. I'm trying not to think too much about it, trust the surgeons, and hope it can be over with as soon as possible. Often the waiting and anticipation can be the worst. 

As I fold the cloth pads. I calculate I've saved at least 5000 non-biodegradable items since 2005, which is both a lot, and a drop in the ocean of plastic waste. Can I donate them to someone post ute-boot, or is that just way too extreme-hippy of me? They're clean, they're still good, and many women around the world don't have access to such quality sanitation items and can't go to work or school when bleeding. (If all else fails, they can mostly be composted, apart from the press studs. Or I might keep them in case of future incontinence - next time I get a coughing flu, for example).

So, goodbye to this little folding-up ritual, goodbye extra laundry and goodbye part of my body and my life for the last 30 years. A hidden part. One that I was encouraged to do my darndest to conceal from the get go. And unlike breasts, the other xx chromosome phenotype, a part that no one will see is gone. A non-essential organ in an individual. A part that held the potential of another human, but instead just gave me 30 years of cramps, blood, nausea, stains, embarrassment, humility, sensitivity, surrender, endurance and relief. The ceremony should perhaps be at this ending, not the awkward beginning. Should I ask to bring it home from the hospital so I can bury it under my lemon tree? Or perhaps this essay will be enough to commemorate the removal of my womb, and the ending of the period of periods. 

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Ps. I am aware I have not used the most trans inclusive language here. Perhaps I'm being vain about my writing, with "woman" being less clunky than "person born with ovaries" or some other iteration. But also, until the last few years, when there began to be much more visibility of others with different gender identities, the gender binary formed the predominance of my framing of the world. Despite being quite pissed off at being born a girl when I was a tween, I've been content as a cis woman for most of my life, especially after I realised it was okay to be a daggy bushwalking lady who doesn't shave and has zero interest in fashion or make up. So, it's not really my story. However, acknowledgements to those that have and do lead a more challenging life outside of the binary. 

10 year fatigue-i-versary

And so March 2026, the month of my ten year fatigue-i-versary, has started with a crash. A big one. The worst and longest reduction in ability for at least 3 years, that is purely coinciding with CFS symptoms, not those of an additional virus. (For me this is sore, tight glands and generally feeling shit, but no snot). And no, I don't know what caused it. When you have ME/CFS you have to come to terms with not knowing. Theories can breed like maggots, but honestly, I don't know what happened 10 years ago, and I don't know what happened just now. I feel like a bird who flew into a glass window. Except this time I wasn't anywhere near flying. Just plodding, pacing, constantly checking in on my internal battery levels, and having compulsory daily naps even if I didn't feel like I needed to. So, it was more like being dumped by a wave. An invisible breaker, with the only warning sign being a crest of feeling unusually well just before the crash. (Apparently this is a common cfs thing. But I had forgotten to be wary, and wishful thinking had me hoping the small surge was a step upwards in ability, not a warning sign). 

Recent crash in data, showing about 50% loss in ability for last 2 weeks +. Don't think I've had a purely cfs-related crash this bad since 2020. 

I could blame myself for being an idiot and "doing too much". I am still prone to getting carried away with what I want to do, rather than really listening to my body. I did have a big week prior to the crash, camping in my little van at Fortescue Bay and trying to get things done in the garden during harvest season. (As of this year I am the sole owner of my house, so the garden is feeling rather overwhelming). But it wasn't doing anything too unusual compared to the last few years. I had been able to do quite a lot. I don't think I was ever at more than 10% of my pre-cfs ability, but it was amazing compared to being house or bedbound. I was getting away with 2-3 kilometre walks (if they were flat, slow and not every day). Going to Cradle Mountain and hosting wwoofers at my house last year were two huge things I couldn't have dreamed of previously. They stretched my limits and exhausted me, but I didn't crash.  I am always probing the edges of my ability, like walking alongside a bog, blindfolded with a stick. Where is the edge? What happens if I push just a little bit further? I try to find the balance between living my life within the fullness of my limited capacity, and mostly erring on the side of caution. And I seemed to have been successful, up to now, in levelling out the push crash cycle. My recent crashes were only a day or two long, rather than weeks, or months or years. 

               Snake hill to Ronny Creek, a walk of a few kilometres I was able to do at Cradle mountain

So having the shackles tightened again, and it lasting more than a few days, has been a rude reminder of how miserable me/cfs can be. Dispiriting, frustrating and scary. I have felt tempted to call the last two weeks "a write off", because I had to cancel my plans and I can't make any new ones until I feel better. I didn't get things done around the house or garden that I wanted to. But I don't know how long this crash will last, and I don't want to call any of my disabled life a "write-off", nor that of anyone less able than me. If there was a magical button to end this disease, I'd press it without a moment's hesitation. But my life is still worthwhile. 

Illustration from 2017 blog post

( https://slowtownsouvenirs.blogspot.com/2017/08/sometimes-cfs-feels-like-jail.html)

The last 10 years have been very different than I expected. I won't ever know all that I've missed out on, had I not got sick. All the 'might have beens', both good, bad and their own form of challenging. I don't know what I would have been doing for a job. Maybe I would've had kids. Maybe I wouldn't. At 43, that window has pretty much passed me by. I've been single the whole time. I've been forced to be less social than I want to be. But I've often appreciated the slowness. I've done a lot more meditation and yoga than I would have otherwise. I had a very nice time with my magnifying glass looking at leaf litter by a creek the other day. It has been an opportunity for deepening. And I've also done a lot more mindless scrolling and watching easy TV. I've missed exercise the most. And bushwalking for days, away in the mud, sweat and wonder, far from addictive screens and city noise. I think it's inarguably, a diminished life. But it's still worth living. It's given me more humility and compassion. I take much less for granted these days. I have so much gratitude for a safe place to be sick. And that I've been believed and supported by friends, family and the online cfs community. 

                      Being wheelchaired around fossil cliffs circuit on Maria Island by friends last year 

I haven't tried any "cures" for a while. I tried nicotine patches last year. A friend of a friend was cured by them apparently. Improbable, I thought, but cheap, easy and worth a shot. They made me feel quite awful. The low fodmap diet actually did help my IBS, but not my CFS. Another friend of a friend enthusiastically promoted another "mind-body solution". I read the book from the library with all the miraculous testimonials of  recovery. I gave it a go for 2 weeks. Nothing happened. I hereby declare myself a failure at curing myself from cfs with the power of my mind. (In other words, I don't think stress, trauma and mental health are a big a part of the puzzle for me, as they are for some people). However, if a scientifically proven cure with a high success rate is found, I'm sure I'll hear about it. 

                                                                                From 2017 blog post 

So. Here I am. In a bit of a hole within a hole. I don't have any realistic hopes for a full recovery in my lifetime, but I do hope I can get better from where I am right now. I don't think I have anything new to say that I haven't written a post about already, with more nuance and detail than in a short-ish 10-year summary*. I'm not sure how long this particular crash will last. I'm back to living one day at a time. Torn between having to rest and wanting to do things. No swims or camping trips this March as I don't feel well enough. Staring at a screen. Feeling excruciatingly vulnerable to global and local events beyond my control. Wanting to be free. Knowing how incredibly lucky I've been. Looking after myself as best I can. 

* In 2020 I wrote about losing ground, and in 2021 I wrote a 5 year fatigiversary post. I'm still quite pleased with both of the essays, and not much has changed. 

Eek

Narcissus Bay

Narcissus Bay is a place haunted by the ghost of my past self. She's in my muscle memory, my familiarity with the earthy smells, endemic bird calls and the rhythmic sound of walking along duckboard. She's in my knowledge of the area, and the sense of home I feel there. Past Jen straps on her gaiters, hoists up a 20kg pack, and walks and walks and walks. The uphill, downhill, winding, bush path. She does this for 8 days straight. Time and time again, through the changing seasons, over 5 separate years. She sweats, sweeps, heartbeats, dips in icy creeks, greets people, checks parks passes, answers questions, mops floors, scrubs toilets, lugs sloshing buckets, faces the wind, breathes it in, pulls on her sodden rain jacket and wet boots, and prunes the bauera. She's competent, confident, fit and knowledgeable. 

I'm sure those of you that have lost someone are sometimes vividly reminded of them, by a scent, sound or place. It was my first visit back to the Cradle Mountain-Lake St Clair National Park, 8 years and 9 months after being struck down with myalgic encephalomyalitis/ chronic fatigue syndrome, and a not-unexpected trigger for the grief of losing the person I once was. 

It felt so strange to be there. She was still so near, inside my cells. Were the past 9 years only a dream? Apart from a new jetty, new verandah on the old hut, and the fact I no longer fit very well into my hiking pants, the only other change was the tea tree thickets around the lake edge had grown taller and denser. I even greeted my old colleague, wandering by in his gumboots and big red gloves, off to clean the toilet, and looking no older than he did when we worked together. 

So strange, because she's still so far away. On the other side of an invisible, but cataclysmic chronic condition, that came out of nowhere. Past Jen: healthy, young, friendly, oblivious, track-ranger Jen, had no idea what was coming to knock her off her path. I am now a 41 year old disability pensioner, and I took two days to drive from Hobart to Lake St Clair, breaking up the journey by sleeping in my van on the way. I was nervous, as it was an adventure out of my known physical safe zone, although I had friends to carry my pack on the short journey to and from the ferry. I was cautiously hopeful when I pulled up okay after a couple of 3 km walks, though they were flattish, and slow as usual. I yearned to keep going, but I had already walked much further than I have since 2016, and if there's anything I've learnt from ME /CFS, it's that pacing is the boss, consequences for going beyond your limits can be severe, and boundary-testing must always be gentle. 

The walkers completing the 65km Overland Track could've been the same people as last decade. People discussed their cravings for hot showers and hot chips, and who was catching the ferry versus who was hiking the final 16 km around the lake. They compared various bits of gear, complained about the mud and toilets, jealously wondered what luxuries the private tour groups had that they didn't, and asked if anyone had any spare mosquito repellent. Sitting and boiling my trangia on the verandah, I told a lot of people about my condition, as bushwalkers tend to be friendly sorts, keen to compare mountain-climbing notes, and my disability is not a visible one. I'm matter-of-fact about it. 

"I didn't climb the Acropolis this trip, but I have many times in the past. There's a small tricky bit near the top, but it's otherwise pretty straightforward……. No, I'm just camping here for a few days, going for short wanders, sitting by the river and having lots of naps. My battery only charges to under 10% these days……….. It sucks, but I'm much better off than I was, and so much better than some people with CFS, who are stuck in darkened rooms for years, and can't even stand up long enough to shower................. No, I don't know what caused it."

Only one man, a teacher, immediately understood me, as he had been reading the blog of a previous student of his, in Italian. I felt grateful for this fellow sick woman on the other side of the world, her communication efforts, and our distant connection. 

I know that everyone has lost the version of themselves they were 9 years ago. The younger, stronger, less problematic bodies. The naivety. The possibilities that seemed to exist at that time. But my loss was abrupt rather than gradual. One month I was skipping up boulders to the summit of Mount Ossa, the tallest peak in Tasmania. The next month I was too unwell to sit upright in the doctor's waiting room and had to lie on the floor. (I started taking my camping mat to appointments after this). My transmutation has also been more diminishing than the also-significantly-life-altering portal of parenthood, which most of my cohort have entered since then. It's been more like suspended animation. In the early days I spent months mostly in bed, submerged under a swamp of flu-like malaise, where I could barely even talk for long, let alone take out the rubbish bins or hang my laundry. My early 30s worries about a potential career change and finding a partner to have a family with dropped away, as I struggled to live in my new, sick body, that just wasn't getting better, no matter how many restrictive diets, medications or "cures" of varying credibility that I tried. 

It's also been a time of increased humility, compassion, patience and deepening growth. There's been grief, pain and frustration, but deep down I've mostly been okay. Unlike many others, I've been lucky enough to have been believed and supported by friends and family, and I live in beautiful Hobart, able to gaze out from my house at beautiful kunanyi, solid and steady under the ever-changing sky. 

Visiting Narcissus Bay was emotionally complex. But so beautiful. The 'mud' that everyone was complaining about smelt of delicious, wet, clean earth to me. The water was freezing, tannin-dark and pure. The buttongrass was golden, and the cider gums and cabbage gums tall, stately and gorgeous. Wildflowers and coral lichens decorated the edges of the path: yellow splashes of Hibbertia, purple fairies aprons, and white mountain-rocket. The rainforest was full of rot and life: old, soft, damp and green. Echidnas were furry, cute and enigmatic as they foraged for insects. The piles of wombat poo deposited along the trail were delightfully square. Honey eaters chirped, and wattlebirds defended their territory with harsh croaks. The black-currawong calls echoed across the crumbling dolerite peaks at dusk, as the platypus prowled under the water. I felt clenches of grief. But also a great expansion of gratitude. Past Jen, who was housebound for the first few years of CFS, had no idea she'd ever recover enough to return to this place she loved so much. It was a precious few days. 

Friendship

Me/cfs is an invisible illness. Not only because there are no outward signs (I look completely normal until you see how slowly I walk up hills, or notice how many naps I take), but because many patients are housebound or bedbound, and can slowly fade away from the consciousness of the healthy, active, busy people. There are many tales of loneliness and hurt over lost friendships on the support group forums. As well as slowly disappearing, people can misunderstand the illness and accuse their stricken friends of making it up for attention; or being unwilling to help themselves, when they don't accept "helpful" suggestions of dietary change, "positive thinking" or homeopathy. 

Comparatively, I feel very lucky I still have friends, and that most people in my life have never doubted me. However my experience of friendship has certainly changed. 

I spend a lot of time alone these days. I could never really apply the introvert/extrovert dichotomy to myself in my previous, healthy life, as I was both. Apparently that means I was an ambivert, but I wasn't like I could be either and didn't mind either way. I needed both enough time with friends and enough time alone. CFS has forced me much further into introversion, as I now need time to recover after peopling. But due to this I don't get as much peopling as I would like. This is just an unfortunate truth, along with all of the other limitations this disease has imposed on my life. 

I very rarely experience spontaneous interactions anymore. All "catch ups" are carefully planned, and most are initiated by me. I don't receive many invitations. The one exception to this trend is a friend who is far sicker than me. I think this is because when you are the person with less flexibility it is somewhat inevitable that you instigate catch-ups, as you need more control over the timing and frequency of your social interactions, which consume finite energy. However, if my friends respond positively to my messages and seem happy to see me when we do meet, then I am happy to keep instigating. I don't keep trying for very long if they don't respond though, because it is in my nature to wonder if I've done something wrong, or they don't enjoy my company anymore. (Rationally, I know it's more likely that their life is busy, time is limited and I'm just not one of their priorities at the moment, not that they actively don't want to see me). 

(For the record, I would like to receive more invitations. My social capacity does exceed my organising capacity. But I know I would have to say no a lot!)

In addition, infrequently "catching up" with people is a very different sort of interaction to going on an adventure, or working on a project together. You feel obligated to talk without breaks, to share all your news in a limited time, rather than a natural flow of speaking and silences, silliness and seriousness. I miss the ways that I used to be able to spend time with people, and I'm grateful that I still have a few slow-camping friends, who enjoy things like jigsaw puzzles, cups of tea, making art, micro adventures and looking for bugs. 

My very-sick friend, who is fully bedbound, is sad that sometimes her old friends drop away and she cannot make new friends. However I've been luckier, as even though I don't leave the house much, I do have housemates, some of whom are now my friends. Housemate interactions are different too. You can be quiet and reclusive, or talkative and cheerful, and talk about small inconsequential things. You don't have to say everything at once. There can sometimes be more tension with negotiating shared living space, but also less pressure to "catch up". 

I've also made a few online friends, which I wouldn't have thought was a real thing before. And some old friends are supportive online, which I appreciate, even though I don't see them in real life. I do spend too much time and share more than the average person on Facebook. This is me compensating for less IRL interactions than I would like. That and I appreciate the slower, more thoughtful conversations that the written word can allow. Social media has its advantages and disadvantages. But I prefer it to isolation. And people I didn't even know very well have responded to my call outs for help via the platform, which has been amazing. (I know that the "love languages" theory is just unproven pop-psychology, but if it is real, one of mine is definitely practical support. It's hard to think about much else when you don't know how you're going to get your next meal, or get home from the hospital). 

I sometimes feel like some of my previous friends might have been fair-weather friends. But I don't blame anybody. I really cannot guarantee that I would've been a very supportive friend if it had been the other way around, as I might've been too busy doing all the things. People have moved further away, had kids, demanding jobs, exciting adventures and life challenges that I don't even know about (because I haven't seen or heard from them!). It's pretty common that people prioritise their time and energy on their romantic partners and nuclear families, when they have them. Or we may have been growing apart anyway. (I have had too much time to ruminate on friendships from the past that have ended [or indefinitely paused], and wonder if I was thoughtless or difficult in some way. [But I know I was never intentionally cruel]). And I wonder if some people shed me as a friend when I first got cfs, because they feared I would become a burden, and would ask for more help than they could give. Or perhaps the fact that someone like me was very healthy one day and disabled the next was too confronting for them. This may be hurtful, but I do understand. I'm not irreparably upset with anyone. 

It's possible some people don't know how to treat me, or feel nervous about what to say after this significantly-life-altering illness. Some things are the "wrong" thing to say, and I have complained about this publicly on facebook. However it's not as simple as "just treat disabled people the same as everyone else", because we do need people to know about our limitations, and we need to be able to ask for help. Personally, I want to be treated with the same dignity and humor as everyone else, as much autonomy as possible, and the same assumption of intelligence and responsibility as always. I need understanding and assistance, but not pity, false cheer or toxic positivity. (I'm pretty forgiving though. It's not as if I have never said a thoughtless or stupid thing!) 

However, I think the reason I'm lucky to have retained enough friends, unlike others with CFS, is because I had some top quality ones to begin with. I used to do a lot of volunteering, and I believe that is where you can meet the good eggs. (Some very weird eggs too, but overall good ones). And perhaps my part of Tasmania has a greater proportion of people who value things like community, nature and a slower pace of life. I'm so lucky that I got to be healthy until I was 33, and had the chance to give out a lot of energy, and cultivate this community. 

So in conclusion, my experience of friendship hasn't stayed the same, but I still feel like I've been one of the lucky ones. CFS is a chronic, ongoing, indeterminate, possibly forever illness. It's not a short term crisis that can be rallied around, with an end date. It's not very fun. I'm very grateful to those that continue to respond to my messages, come on my slow camping trips, have boring catch ups rather than fun adventures, and offer help when I ask. Friendship is both universally common, and individually rare and precious. 

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Of course my experience of CFS is also shaped by being single, from 3 years before I got sick.

It's not necessarily the worst thing. I'd much rather be single than be in a bad relationship.

But I sometimes miss having a person. Old jokes, reliability, comfort, tenderness, and someone on your side. That's the fantasy anyway. It could be bitter retorts, stale conflicts, infuriating habits, and taking each other for granted. Or more likely, a combination of the two, but hopefully more of the former. I know relationships take work, even if they do have good bones. 

On the plus side, I haven't felt like a burden on any one person. When I need help I usually ask on facebook, hoping at least someone in the wider network has the capacity to help me at that time, rather than expecting one person to do everything. (I'm lucky I have the capacity to do this management myself. My bed bound friend cannot use screens or phones, and is very dependent on her partner. If she didn't have him she'd probably have to be in a nursing home, not in their lovely, quiet bush-side home where birds, trees and marsupials bring her glimpses of joy).

I know it is possible to have a strong, mutually beneficial relationship that has weathered some huge life changes, and isn't at all what you imagined when you first met. However not everyone's relationships survive things such as CFS. The healthy partner's dreams and plans are also impacted, whether that be for children, shared adventures, or just plain-old shared workload. Being someone's carer is a lot different to being someone's romantic partner. But some relationships do endure, and are even better for it.  (Here is an abc article on this )

However, I just don't have much hope of meeting someone and starting a new relationship. So much so that I haven't even tried, except for the one time in my first year of CFS, when I still thought I would recover. I think this is mostly because of my real energy limitations. I really don't have much to spare, and I'm pretty sure dating would take a lot, as it came with a lot of anxiety for me, even before CFS. When I have a tiny bit of precious energy left over after tending to my basic needs, should I spend that on a sure and proven activity, like catching up with an old friend, or spending time in a lovely patch of local bushland? Or should I spend it on a date that might be mediocre at best? (Perhaps I am too pessimistic. But even good feelings like excitement consume energy. And the cfs loan-sharks are vicious when I spend too much of that). I also need to consider the risk of revealing my significant physical vulnerability to strangers, who might not have the best of intentions. 

I think ableism is a factor too. Both from other people and from myself. I think people do judge potential partners on what they can do, not who they are. People like to imagine adventures and projects they can do together. How a relationship will work practically is a significant consideration. Previously, I would've wanted an adventure buddy too. (I still do, just slow, micro adventures!). I'm still dubious of people who stay at home doing nothing, if they have the option of being out and about leading a full, fun, meaningful life. I was an active, outdoors person who did a lot of volunteering, and have only ever been attracted to people who held similar values and verve for life. I struggle to imagine that someone like that would desire a partner with my limitations. And perhaps I am being too close-minded when I can't imagine being attracted to and sharing values with somebody who is voluntarily sedentary. 

There's the possibility of dating someone who is also disabled, and therefore "gets it". But then there's still the limited capacity problem, except on both sides. The number of occasions you are both well enough to meet might be very few. 

I also worry about letting people down if my energy fails me some time in the early stages of a relationship. I did go on one date in 2016, after some long email chats. However shortly after that I got really, really sick and pretty much ghosted the poor fellow. I didn't mean to, CFS just dragged me under a massive pile of glandjy-sludge and brain fog for months. But I still feel bad about it. 

I highly value that my housing and financial situation is currently independent of a romantic partner. However it is tied up with a friend in a home co-ownership arrangement, where I have management responsibilities. This creates a further inflexibility for future relationships. Not to mention I could also lose my dsp if I decided to live with someone. (Yes I am thinking WAY too far ahead here!)

I haven't ruled out unconventional relationships. There are labels for all sorts of sexualities these days, which I think on one hand can make people feel validated and not-alone, and on the other, try to pin something rigid and inflexible on the fluidity and constant unpredictability of the human experience. I've thought about it a lot, and am pretty sure I'm just a boring old heterosexual, which is unfortunate because that both limits my options (already not huge for a post-40-year-old in a small city), and because men are often suffering from unideal patriarchal conditioning (i.e. a lot of them are big doofuses). I also might be something like a "demisexual", in that I'm not into one-night stands, or anything with someone I haven't established enough trust and regard for. (Which takes more time and energy). (Although both these things might be deeply internalised biases from growing up amongst the generalised homophobia of the 1990s, and a sex-negative, "soft"-Christian upbringing).  I have never tried polyamory, but I'm not theoretically against it. I think it actually sounds very sensible, although probably quite emotionally challenging in practice. But right now I am having trouble imagining having enough energy and emotional capacity for one relationship, let alone several! 

So, maybe I do need to untangle how much of my inaction in this field is due to my real physical limitations versus those that are imagined. CFS might always be the boss of my life, but perhaps there are kind, flexible, open-minded, interesting, compatible, geographically-proximal people out there. Or maybe my real, physical limitations are too much, and the majority of people are biased against a disabled partner. I still don't know. It is most likely that I will continue to take no initiative in this field, unless my energy improves somewhat. (Or the perfect person magically appears out of thin air!) 

My life is okay, though. It may be diminished and reduced in possibility. But it is mostly calm, simple and low in emotional turmoil, so I am able to manage my cfs well. It is sometimes lonely. But I have enough friends and support, and I don't always mind my own company. It is infrequent in physical touch. But I can pay for occasional massages, pat dogs and feel the breeze on my skin. This is my lot, for now. Things could be a lot worse. 

Synopsis of 2023, my 8th year of CFS. I'm doing okay.

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.

Lake Pedder, River's Edge and Mt Field van trips 

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.

 

 

Friends doing jigsaws and slow walks at Mt Field 

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!

 

Craft creations, selfie wearing a eco-dyed thermal, and snorkel at Fortescue 

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.)

Small and slow delights instead of big hills 

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). 

The main problem with being forced to sit still in the bush rather than constantly moving is...... mosquitoes! (That small patch of exposed ankle did not survive)

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.

Forty!

I am forty! And I’m a single, childless, careerless, disabled, woman. A spinster. Nobody's significant other, nobody's adventure buddy, and nobody’s parent or guardian. I’m a disability pensioner, an economic burden, a leaner not a lifter. I am an aunt - but a geographically far away and mostly unknown one. I live on a planet with many catastrophic problems to be solved, and billions of beings who suffer, but I no longer volunteer or work anywhere. I don’t do much that’s productive or “useful” at all. I’m very slow, not very strong and have to carefully manage my limited energy. I have a bad back and am greying, wrinkling, spotting, sagging, lumpifying, and my BMI is too high. By some value-systems I am a total failure as an adult. Increasingly irrelevant to society. If I died in a car crash and I was not your friend or family, but a stranger you heard about on the news, you’d feel way less sad than if the victim was younger, more famously talented, or somebody’s mother or partner. (Admit it, it’s true

)

I am fine, by the way. I’m being sardonic, (which may not be a good look). Although I won’t lie and say some things never make me sad, or I’ve never balked when looking at the chasm between my reality and “societal expectations for forty year old women” (such as career competency, secure partnership, motherhood), they don’t cut me critically deep. I’m not fishing for pity or validation here. I guess what I’m trying to do (clumsily), is criticize the values that our society is most loud about, yet not all people can embody. And even if they do, it is based on random luck more than anything.

I know it doesn’t actually matter that I no longer conform to what the loudest, flashiest aspects of society find valuable. These can also be shallow and short-lived. No one gets to keep their youth, beauty and strength forever. In the whole animal kingdom only killer whales and humans keep their post-menopausal females around, so evolution says aging, non-reproductive human women are important, even if fashion and the rest of the animal-kingdom doesn’t think so. And most importantly, I still like my life. I like being here on planet earth in this imperfect, but clever, breathing body.

I live a small, slow life with lots of naps. I appreciate beautiful things in nature. I read heaps of books that not many other people have time to read. I really love potatoes. I have friends. I live in my favorite place in the world, and lately I’ve been well enough to go for bush sits and outdoor swims. I provide intentional, blissful, belly rubs to dogs, and unintentional food for sparrows and rats in the garden. Quite a few pot plants depend on me to keep them alive. The only “adult” milestone I have been very-lucky enough to “achieve” is buying half a house. I try not to be a terrible landlady or housemate. I “still” live in a sharehouse, but I’m not the only person I know doing this over forty, and I actually think it’s a bit of an achievement, in flexibility, tolerance and communication.

I wouldn’t swap my life with anyone. Mostly because I wouldn’t want to land any poor sod with my life! Ha ha, but no, despite this dud deal of a body, despite multiple circumstances meaning my life is far from what my younger self imagined it would look like at 40, I know I’m still immensely privileged in many other ways. And I have enough goodness, I have enough meaning.

I hope I’m more generous, humble and less ignorant than when I was younger. I hope I can keep learning stuff. I hope the world as we know it doesn’t disintegrate into a total cataclysmic climate apocalypse before..... , well, ever. I hope humanity finds a cure for me/cfs, or at least finds out why the hell my body is like this now. I hope I still keep being okay even if we don’t. I hope humans keep being delightful and funny and sweet and silly, whatever happens in the world. And nature will always be improbable and wonderous, even if it were just algae, cockroaches, ravens, the steady rotations of the earth, the sunlight sparkles on the ocean, and the stars in the dark universe at night.

So. Forty cries of a black cockatoo, flying down over nipaluna/Hobart from kunanyi to you all. (Raaaaaaaa!)