Posted at 17:00 on 23 Nov 2018 by Pandora / Blake
I'm writing this from bed. It's comfy here: I have a pile of pillows my partner affectionately refers to as "pillow mountain". I was meant to have a fluffy blanket, but my cat has claimed it and is kneading it with a kind of orgasmic bliss. I wish I felt that good.
Bolstered by pillows, it's time for some real talk.
Since the start of October I've not been well. I've been able to manage a few hours work a week at most. I keep hoping that I'll start feeling better, but it hasn't happened yet.
This isn't new, although this recent flare is the longest yet. I've been quietly struggling with chronic illness for at least a year. In April I was diagnosed with polycystic ovary syndrome (PCOS), and hypothyroidism, an underactive thyroid. Both are chronic conditions affecting the endocrine system, and a symptom of both is chronic fatigue.
These last seven weeks, my fatigue has been debilitating. I wake up after a full night's sleep and feel like I just pulled an all-nighter. My body is as exhausted and achy as if I'd run a marathon yesterday. I have to take the stairs at quarter speed, one step at a time, stopping for a rest every step. Some days I can't manage the stairs at all. I have to stand up slowly or else I feel like I'm going to pass out, and then I'm stuck sitting again for another hour or so. Some days I sleep 12 hours and then need to take a 2 hour nap. In between, I'm lightheaded, woozy, too tired to sit upright or hold a conversation. I lie in bed not moving, my heart racing from the effort of doing nothing. I get brain fog: some days I can't make decisions, follow simple instructions, or read a book.
Simple tiredness is something I'm used to pushing through - in fact that stubbornness over the last few years may well be what's landed me in this position. This is different.
Hypothyroidism is treatable, although it can take a while to get the treatment right. PCOS isn't, except through lifestyle changes. Having both makes it difficult to know which condition is causing which symptom, but I'm pursuing good health with all my determination. Since June I've been on thyroid medication, and have made changes to my diet, sleep, exercise, supplements, and everything else I can think of to boost my energy and wellbeing. (Please don't give me health advice or well meaning suggestions. I'm on it.) Ultimately however, neither condition is curable: it's just about learning to manage them.
The biggest treatment is rest. Lots of it.
This is a massive change for me, and it's not been a smooth transition. I'm creative, ambitious and passionate about my work. My chosen career works brilliantly for me, and it's devastating to have to step back from it. I've cried, I've raged, I've ranted at my therapist. And, slowly, I'm adapting. Talking about this publically for the first time is part of that.
I'm learning to listen to my body, and not push through the tiredness to do 'just one more thing', but actually stop and sit down when I need to. I'm learning to skip a shower if I suspect that it would wipe me out for the day. I'm learning to pack a bag with water, snacks, laptop, phone, chargers, notebooks and pens, and keep it by me so I don't have to get up to fetch stuff.
There's been a grieving process, the fear that this is my life now. I'm trying to stay hopeful. Maybe I overdid it in September, and I can learn to manage my activity level better. Maybe the year getting colder triggered a fatigue flare, and it'll pass. I'm pursuing a referral to an endocrinologist, and taking one day at a time.
(I'm going to repeat this: please don't give me health advice or well meaning suggestions. I want support, acceptance and understanding, not advice from people who don't know the details of my situation.)
Our culture lauds productivity above all else. Being 'busy' is a virtue. We get addicted to work, craving the thrill of accumulating achievements, while missing out on the more nourishing pleasures of time with our loved ones and walks in the park. For self-employed people, it's insidious. "Do what you love, and you won't work a day in your life" is a damaging lie. Work - exchanging our labour for capital - is forced on us by our economic circumstances and social norms. By selling the promise that 'work' can be 'play', creative people are tricked into working harder, for longer, for less reward. We are taught to use social media not just to connect with people socially, but to build our 'brand' and 'audience'. We are told that if we do more, publish more, create more, we will gain 'social capital' - the economic value of which is directly represented by platforms like Patreon. If you take ten minutes away from work to play with your pet, you'd better tweet it, otherwise it's that cardinal sin: wasted time. If you have a spare hour in your day, you aren't working hard enough.
As an activist, burnout is hard to avoid. Society is fucked up and there's more work to do than any one person can do, and few people willing to pay you to do it. If you care about making a difference, it's all too easy to get sucked in and used up.
The more I've learned about sex work politics and labour rights, the more I've come to be anti-work. I support the right of people to make the best choices for themselves, and do what they need to do to survive under capitalism - but in an ideal society, we wouldn't have to make hard choices. The majority of our global wealth is hoarded by billionaires while billions live in poverty. We have the resources to abolish poverty and to abolish work, and to live in abundance: only engaging in endeavours because we want to, without economic coercion. It's political will that's maintaining this state of inequality and oppression, not necessity.
Rest is radical. It's a fuck you to capitalism and the puritan work ethic. It's telling that I've only started prioritising rest because my body shoved me back down on the bed and yelled we can't keep doing this any more. I was ignoring the signs for years, and now I don't have a choice about it. But you do.
Healing ourselves is a subversive act. It's also a necessary one if we're going to realise our full potential as human beings. And by "full potential" I don't mean doing more, I mean being more. Being more loving. More kind. More present.
The photo at the top of this post is often shared with the caption, "Early suffragettes often donned a bathing suit and ate pizza in large groups to annoy men". Sadly this is an urban myth, but it's so appealing it went viral. Let's embrace the spirit of these mythical suffragettes, doing activism by getting together in their pleasure-wear to eat junk food.
I'm writing this from my bed because my body is telling me that's what it needs, and that's OK. Let's start listening to our bodies. Too many people are stuck in economic situations which deprive them of sleep and rest. 9-5 schedules are bullshit for nearly half the population - evolution designed 50% of humans to have a later circadian rhythm so we could sleep in shifts, which keeps a primitive community safer from predators. We have a sleep deprivation epidemic which is depriving us of the intelligence, calmness, resilience and effectiveness that is ours by right, not to mention taking years off our lives. I advocate radical napping.
Rather than a model of activism which guilts people for not doing enough, what about becoming conscientious objectors to busyness? Let's reclaim our self-worth, and love ourselves for who we are, not what we do.
What to expect from me
So what does this look like in practice? Well, I'll be posting less content. Long text posts like this take an age to write - I've been working on this one for weeks. You may not see me around as much on Twitter, Facebook and Instagram. After doing enough sex work to accumulate some savings, I've cancelled all my bookings for the foreseeable future. That means I'm now a) kinda broke, and b) dependent on this Patreon as my main source of income, alongside the bits and pieces I earn from my fanclub and selling porn.
Only having a few hours each week to work is making me killer at prioritising. I'm only attempting the political endeavours that seem highest value, and I'm accepting that they'll happen more slowly. I've not worked on my book since I got sick, but I want to break out of that rut and start writing a little every day.
Figuring out how to keep this Patreon alive around the more crucial work of healing and recovery is an ongoing process. If only I could get crowd-funded for resting! I'll be sharing excerpts of my writing, and links to pieces by other people. My chronic fatigue face isn't pretty, so you might see fewer videos and more audio posts, or talky videos which don't show face. (My cat may 'volunteer' to model in my place.)
I'm focusing on work I can do from home - and even from bed - in small bursts. Bed is a private zone for most people, but as a sex worker it's always been a liminal space for me: public and private, work and play. Rest is radical, but I still need to pay the rent, and right now that's you guys, and me taking selfies in bed. I'm updating my fanclub with a photo or video every day - I post sexy and kinky photos and videos alongside honest snapshots of my daily life. I did a video version of this blogpost there a few weeks ago, and it's the first place I post all my personal news.
Mostly, however, I'm resting. I've got to the point where I'm okay with that. I hope you can understand it too.