LAST YEAR, AT age 34, I got my first tattoo. It’s a smirking, smouldering portrait of Frida Kahlo etched into the most painful part of my body, to remind me that pain is not all I am, and that greatness can be achieved if I go about it the right way. To me, greatness is living as a vibrant and sexual person who is constantly creating, alongside, and not despite, the physical ailments that are a part of me.
For the past 11 years, I’ve lived with fibromyalgia – a long word that means ‘all my stuff hurts’ – and for the past five years, chronic fatigue syndrome (CFS) has come along for the ride.
Fatigue is different from being tired. It’s like everything in you is stuck to the bed, chair, floor; you wake up tired, sleep tired, and walk around in a constant state of jetlag and confusion.
Having that art carved into my arm serves as reinforcement: a pep-up when I’m flagging, to remind me that I’m desired, I desire, my blood thrums and marches around my body, and my breath catches just like anyone else.
MY LENS IS that of a cisgender woman, in a monogamous relationship with another woman. Our two-year wedding anniversary is in April; our six-year relationship anniversary is in August.
My story is mine alone – no two people living with debilitating chronic illness are exactly alike.
When I first became unwell, it was a huge shock to go from a fit, busy 24-year-old to someone whose arms didn’t really work anymore. As time goes on, the pain doesn’t usually register as pain, unless the levels spike due to mismanagement, weather, activity, or daring to spend more than four minutes weeding the garden.
My status quo is as a person who moves around looking pretty much fine, but, underneath, I ache. There’s widespread, severe tension from the constant pain.
AT FIRST, I was a sexual starfish. It took me awhile to realise that I was going to be in pain no matter what I did, so I may as well have a good time and make the pain mean something beyond that arbitrary diagnosis.
Taking my power back meant that I could control the amount of pain I was in. This means that being sexually active is a luxury. Whether it’s in the loving embrace of a partner, the heady excitement of a one-night stand, or an ongoing arrangement with a friend, choosing to engage in sex throws my energy chequebook completely out of balance.
Sex today means no cooking for three days. It means no walking my dogs. No way I could do any housework. My weekly trip to pilates, where I stretch and work on my strength, would be off the cards. With increased pain comes diminished brain function; words are often just out of my mind’s grasp – it once took me 45 minutes to remember the word irony.
The most important lesson for me was learning that I do return to that balance point, that equilibrium. I just have to pay the piper with a few days’ rest.
BACK WHEN I was footloose and fancy-free, I enjoyed dating and exploring my sexuality with women, but I would be lying if I said that being a sick person didn’t impact how I saw myself, and how I dared dream that others might see me.
When a woman I met online and I went out for a few drinks, and she came home with me and was literally naked in my bed, I still didn’t twig what was happening, until she asked me if I wanted her to leave. Heavens no, I was delighted, but it was surprising to me that I could be desirable to her.
It shocked me that I had pocketed that part of myself. I was 27, but I felt like some sexless, walking-around illness blob.
Another woman I went to bed with around that time was in the early stages of multiple sclerosis, and would avoid climax because it caused her a lot of pain. I, on the other hand, wanted to get to that fi nish line as soon as possible, before my body went kaput and wouldn’t play along anymore.
In the past few years, it’s dawned on me that this chronic health stuff isn’t going anywhere, so I’d better sort myself out and make the most of life. No more waiting to get better, being shocked when the winters are worse, or devaluing myself because of this singular part of me.
WHEN MY WIFE and I met and started dating – after some awkward bumbling and long dog walks – things felt different. In the past, the manic chatter in my head that inevitably accompanied new love and lust would seem to ruin everything. But with her, my mind went quiet. I knew that whatever happened, we’d be together and would find our way.
It was less crashing of fireworks, and more the warmth of a loving hand in mine. That’s when I started to learn about a different kind of intimacy and love.
I remember one morning, waking up in a vintage caravan at a food and wine festival, after she had said “I love you” for the first time. The dappled light coming through the curtains and the warmth of her breath on my neck as she said those words to me are things I’ll probably remember in my final moments.
She whispered in my ear to stay very still and not move a muscle. As we started to fool around, she kept reminding me to dissolve the tension in my body that makes everything crack and break. With that declaration and demonstration of love came understanding of my body as well, one of the many creative gestures that I would marvel at in our life together.
THERE’S A CONSTANT interplay of practicalities and exploration that goes along with the sex-life of a fibromyalgia and chronic fatigue host. Like many people in long-term relationships, sex isn’t always on the list of priorities – but when it’s on, it’s on like Donkey Kong.
It may not sound sexy to find a day in the diary where I don’t need my brain working too well, or where I don’t have to go anywhere, and to know that the days prior are up for grabs, so to speak. But those are the days where the carefully planned magic happens.
During my ‘research’ for this article, we found one of those days and I noticed that I’m pretty much constantly laughing during sex. It’s not that I find it particularly hilarious, but it’s one of the few times in life when I’m completely in the moment, and that moment feels really fucking good. The laughter is an expression of the joy of being lost in sensations and nerve endings, connection and love.
Other times, I’m in a non-stop state of bargaining with my energy chips: “If I get up now and shower and make breakfast, then I’ll rest so I can do an hour of work.” It’s dullsville, but it’s necessary.
I find it hard to lose myself in kissing and fooling around. If I allow the loss of my careful control over each moment, and each minuscule scrap of energy, I feel like I could potentially lose my handle on all of it.
But my wife tells me that very thing is what she likes best about my eros: that when we’re together, I seem to have a gift for making the outside world disappear and time grind to a halt. Perhaps because I know, in my very connective tissue and bones, how precious that feeling is – my body knows that when I’m in, I’m all in.
When we hold hands there’s a pulse between us. It feels like a heartbeat, and there’s nothing in the world like it. Our love has many different dialects that we use to stay connected.
IN FEBRUARY, Western Australian Greens Senator Scott Ludlam raised the issue of research funds to train medical professionals about chronic fatigue syndrome, and to find a way to diagnose, improve the statistics, and edge towards better quality of life.
It made my head explode that anyone could give a damn about people like me, because that has not been my experience when dealing with the medical model.
It seemed unbelievable that my sexual experience could expand from sensual handholding and extremely planned-in-advance sex, if some research dollars were devoted to getting rid of this disease. It’s a frighteningly hopeful mental space to be in.
There’s very little about sexuality and chronic illness alongside and in the mainstream media. In January, I read an article by Naomi Chainey on Daily Life, referring to spoonies – a term for people with debilitating chronic illnesses.
The Spoon Theory was originally coined by Christine Miserandino, as a simple and visual way to explain how lupus feels, while she was sitting in a cafe with a friend. Grabbing a handful of spoons, she explained that on any given day, we have a finite number of units of energy, and each spoon represents one of those units as well as a task.
Showering is a spoon, drying off is another. Some of us run out of spoons faster than others, and once your spoons are gone for the day, that’s it. No more tasks. No more activity. It’s sometimes possible to borrow against tomorrow’s spoons, but I quickly learned that the interest rates are pretty high, and bouncing back can take an awfully long time. While I wait for my spoons to regenerate, life goes on and tasks pile up.
One sentence of the article by Chainey made me leap out of my chair and practically vibrate with the rush of being seen and understood.
“I’m active as spoonies go. Still, I’m constantly calculating: doctor’s appointment or groceries, shave legs or do laundry, sex tonight or paid work next week? When life presents unexpected tasks that can’t wait, my spoons get rearranged. My daily quota doesn’t always match my plans.”
Chainey went on to say, “As energising as sex (endorphins) can be, spoonies feel our ‘can do tomorrow’ lists shrinking as we orgasm, and don’t need well-meaning folks suggesting sex as a solution to our ills.”
There’s a lot of research about sex and orgasms being great for relaxation and pain management. Sex doesn’t provide benefits for all people living with CFS, but for me it’s about the uncomplicated and purely selfish joy of a quickie with some sort of device.
My wife came home one afternoon to see a magic bullet (not the one that makes pesto) in the bathroom, and sauntered into my study to ask if I’d had a lovely time while she was at work. Damn right I had! I’d had a shitty headache, and found the quickest way to rub out the problem.
A bit of well-written feminist porn, a charged-up bullet and 10 minutes of my day can make a world of difference to tension levels, pain and even brain function. It’s ‘procrastibation’ at its best.
I’M STILL ADJUSTING EVERY day to living in my post-fibro, post-CFS body, but I know that I’m not alone. The fierce and talented woman inked into my arm, always in the corner of my eye, helps to remind me of that.
It took seven hours in the tattoo artist’s chair to understand how mistaken I was to see myself as damaged and broken. When I look at Frida, I don’t see a sick person, a sufferer, or someone to pity. I see a woman who changed the world with her vision, and shared her truth unflinchingly.
Most of the time I see myself as strong and resilient, and on more challenging days I’m learning to have patience with the way social pressures can stab me square in my self-esteem, or how tricky it is to value rest, and to be graceful in accepting convalescence. I haven’t stopped; I’m just recharging and getting ready for the next round.