Wednesday, September 21


I have a tumultuous relationship with my mind. It's a beautiful and terrible place, one I know a little better for not having had as much external stimulation in recent years. My knowledge of it has alerted me to the fact that it could do with a little cultivating.

I am prone to wandering thoughts, epic social post-mortems, shallow breathing, fear of sitting in physical discomfort, worries about how I can't keep going, and a desire to flit between distracting medias to avoid reality, which makes me less content and more terrified of existing fully in the gift of the current moment.

Several medics have encouraged me to explore the concept of mindfulness, and just after the latest encouragement, a friend alerted me to an online, free, six week course through Monash University. I have begun it, and it's bite sized and very encouraging.

You can still join now, and exercise your mind:

Thursday, September 1

going out when you're homebound

I did it again, a house leaving excursion which didn’t go extremely well. The last couple of months there have been very few excursions and a 100% didn’t-go-very-well rate. But things seem almost possible in pajamas whilst lying on the couch, and I decided to make a trip to pathology collection, lured by sleep. I’m really quite straight forward when it comes to motivations; my mind is trained on my next sleep, and my next eat. I knew Mum could drive me in the afternoon, but if I went by myself in the morning then I could rest aaaall afternoon and potentially not be some kind of aching grey puddle in the awful hour that is waiting for Ben to get home from work. The golden rule of being Marigold’s mother: Do not use up energy late in the day or you might run out before parent no. 2 arrives home.

If you’re feeling dizzy while changing nappies and putting on proper clothes you shouldn’t hop in the car. I know this. But I wanted a peaceful afternoon, so I wobbled on. And it feels so momentous to go out when you’re not used to it, the world feels very big and interesting after a small house.

In the car my right eye was swelling with uncomfortable tears. I am one of those people who gets colds in their eyes, and my eyes weep at their own sweet leisure through the day making me appear excessively emotional. I could vividly imagine them starting to run the second the needle went in, and assuring the nurse that I was not crying from the sting. Smarting eye, dizzy vision, cars and trees swooping by...regret was taking hold as I prayed through my short and dangerous drive.

There was a decent wait before it was my turn. Enough time to really thoroughly crumple. I usually make it my mission to avoid hunching and crossing my legs and conducting myself in a terribly gauche manner. But there I sat on one half of the ample chair, arms folded in on myself, wearing a grey top, eyes smarting, slumped over. Aware, but not correcting myself.

My mind began to race, about how to make it home – can’t get a taxi home with a baby car seat...this was unwise, I’m stranded...could Ben take me home in his lunch break, but that’s not fair because he’s been off work for me all week...but miracles happen all the time, I might be ok.

I eat a banana, get a glass of water. Neither seems to revive me.

It’s my turn, and the nurse and I smile at each other and acknowledge that we have met before. Many times, if we're honest. I prefer being pricked by her to anyone else. I remember that when I was pregnant and throwing up here there and everywhere, she stashed a few vomit bags in my tote because she knew I'd appreciate them. 

The paper work takes a long time, maybe because I’m getting genetic testing, and I try to bolster my baby’s patience with all kinds of handbag treasures. I’d saved the car keys till last, my piece de resistance, but they don’t seem jangly or spiky enough for her today.

“Did you fast for these?” She asks, forebodingly.

“No, I didn’t. The slip said non-fasting,” I reply.

“Ah yes. It does. I’m afraid one of the tests does need to be fasted for...”


I’m so overwhelmingly drained, I’ve given so much to get my bloods done. In another life, I would have covered my dismay and said, oh that’s fine, never mind, I’ll come back another day. But I’m too tired, of being sick and being impeccably charming. I don’t hide it.

“Oh. Really. That’s a real shame. Because I’m not very well, and it’s going to be hard to get back here. And I also don’t know how I’ll go fasting because I need to eat through the night to sleep. I think I’ll have to get someone to drive me in another day.”

“Well, we could take them anyway, when did you last eat?”

“A minute ago. No, let’s not muddy the results.” I say

“You know what; I live just one suburb across from you. I could drive past your house on my way to work tomorrow morning and take them for you?”

I’m stunned by her kindness. I know this is an out of the blue offer, not a service offered by the practice. I know she is just being the kindest nurse in the world. I tell her how much it means, but that I couldn’t let her do that. We agree that we will take most of the tests today, and I’ll take the other one next week, on Ben’s day off. She says if I fast from 2am, it should be ok.

My eyes don’t weep during our appointment. I leave the practice. Her kindness upped my energy in a good way, it gave me just the right amount to get myself safely, if a little precariously home to my couch.

The gift of health is more absent than ever, but in its absence is an ever growing pile of radical kindnesses, spiritual epiphanies, and sweet unfoldings, which seem acutely precious.

Tuesday, August 16

essence of sad

Have you been so sick for so many years, that you lack the will to go on?
They say health is the most important thing, cheerfully they pronounce it, to inspire their gratefulness, 
to wash away their great unhappiness.
But you don't have health. 
You don't have well. 
They say friends too, they are better than career you know. 
Career, it went, but friends you have. 
You have friends you rarely see,
friends you hold on to, but always fob off. 
You love them from your couch, but it isnt enough.
You don't cook for them, ever, and you're always writing to say 
'less than an hour, but I love you ok'. 
I'd love you better if I could. 
My mind loves you. I swear. 
They say happiness inside, that's up there too. 
Peace for the ride.
And you have that one. But with essense of sad.
You want it unconditionally. 
In the sore, crawling, lonely, drought.
But it morphed into sad, behind your back, so now you feel bad. 
That you're sad. 
Sick bad, and then guilt bad. 
And lonely bad, and too-long bad,
And hermit, outcast, worthless, cold,
too-much, and can't-go-on bad. 
Till the sun pops out. 
It kisses you and hugs you and shouts:
It's a beautiful day to be alive.
You have alive! 
And alive is meant to be here,
and meant to be here is purpose,
and purpose is go on. 

Thursday, August 11

hi struggler, have you tried...?

It's been over 300 days now since I gave birth, or kind of gave permission to have my stomach cut open. I said, "I can't read all that stuff about dying or never walking again, so I consent but I'm not looking at what I'm consenting to," and signed a blotchy left handed signature, a Freudian smudge, thinking to myself, I probably will die of panic, or feel the surgery and then die, and I hate this idea and being an adult even though I simultaneously love that my body grew a baby, and I bet she's not even as sick as you think, I bet she's perfect, and I really hope we both live.  

And we both lived. We have lived strugglingly and lovingly ever after. 

I'm accustomed to struggles, as are most humans. There have been a couple of uncanny similarities between chronic illnesses and the more woeful parts of parenting, which sounds like a miserable thing to say, but it has happily made the whole experience almost familiar. 

I went to an opshop after not sleeping through the night for nine long months, and having chronic fatigue and another illness, and the man at the counter said perkily, "You look well rested!" I fumbled for a reply, but I was so absolutely unrested I could not think of one. Awkwardly I murmmed something about resting during the day. To which I'm sure he thought, see, these housewives just sleep all day, no wonder they're well rested. I have a feeling he either isn't parent, had a unicorn baby who slept in a cot and through the night before it walked {please may this happen to us, there's still time, please}, or snored through his offspring's night time howls for comfort. Or maybe he suspected it had been a while since I'd received a 'fresh as a daisy' type of comment, so he took it upon himself to deliver it. 

Whatever the case. Have you seen me lately?! Probably not, because I'm too tired to leave the house. But the dark moons under my eyes, they take pleasure in shocking me when I pass mirrors. If you looked up my Google searches which you must never ever do because you will think I am unfit to be an adult (I never wanted to be one anyway) you would find ,"how to make eye shadows go away?" written all different ways to get the best search results possible. They said: Get more sleep. I closed the tabs. They have no idea, they have not met my child. They said: Wear make up. That's not 'away'. That's hidden under paint, and I don't like that when I take paint off I feel more fugly. They said: Wear cucumber circles. I don't think we even have cucumber because I'm too sick to go to the shops and Ben doesn't buy them because they're not carby enough for me, and I don't lounge round in a bathrobe with slimy disks over my eyes because that's not keeping half an eye on my charge. I didn't find one single thing that would help, not one glimmer of hope. And then I started finding white hairs, aged twenty five almost twenty six.

Google, Google, on my phone: how come my hairs are already snow white?!?! 

Google said, genetics. I said, sleep deprivation too.
Anyway, I am not well rested. I used to feel unwell after sleeping from 9.30 pm till 8.30 am only waking to coldy inform my bedmate that he was snoring, but now I'm lucky to get till 12.30am in one stint. So, I feel tired-dead-tired-dead, as I expected to. Tired isn't a good enough word. Wasted. Or my favourite for this year: Haggard.

Humans have been trying to make other people's lives better since the first suffering. I have a serious case of it, though I'm trying to reform. It's a way of loving, it can also be a way of irritating. Early on, just after my diagnosis, people who had never had this illness used to say 'have you tried this expensive treatment and this almost extinct herb and this quack of a doctor and this unlikely and exorbitant retreat you can't afford because you're on the pension and this mental health book and this YouTube video, because I think it will cure you?' Every second day. I tried so many things I can't remember them; things which seemed affordable or scientific or whatever. Mostly I only tried the advice of actual sickies, because the other people had read something about my illness for one minute, and myself and my friends had been reading  for years. 

And then came along my baby, who doesn't sleep if she isn't touching me or Ben {slash using us as her mattress}, and 'doesn't sleep through' which is code for 'normal non-unicorn baby'. You know when you accidentally let slip that life is hard? Help arrives! So fast you're not even sure if you asked for it! Usually, a vast array of suggestions you've already dismissed. There was a flood of kindliness in the form of, "have you tried warming her bed up, or rocking like this, patting like so, going to a sleep clinic where you won't sleep for five nights and will consequently end up in hospital with vertigo again, or making her cry till she gags and then gives up because she knows you're never coming back?" And "Have you tried solids, solids, solids?" And "Oh, she doesn't like solids? Mine does. But, I love my food!" Ah. Well that solves the solids question. I only eat with gusto seven times a day.
All the comments were relevant to different kinds of mini human beings, but not the kind I have. And amidst all the kindly comments came this one,
"You guys are troopers. These sensitive koala babies are really hard work, and you're doing so good. You'll get through one night at a time. " 
No advice.
Even though she was the best poised to give it because she's mothered one just like mine. There were also people at church who made us dinners, and said, we struggle too, we have no advice, how can we help. 
As it is with the sick ones. They don't hand out advice, because they know that of course you've tried, and you will ask. Or that you have no choice but to endure, and you merely need a kind word.

They're strangely familiar, these fresh struggles. We have met before.
 An issue not easily resolved. Plodding on, sometimes hopefully and peacefully, and sometimes with bitter lead in my veins. There's always the poignant symptom I am well acquainted with: the struggle to feel untainted happiness for the ones who have what I don't.
It bears the hallmarks of my longing to be well, and my friend's longing for a partner, and my other friend's longing for a child.
This year it just hit. Deja vu. It's all the same, when you simmer away the specifics.
We're all the same.
We've all just weary and in need of a kind word. A really kind word.

Wednesday, June 29

if you want to understand me, voila.

Many thanks to fellow CFS sufferer Jessica for making an extremely accurate infographic of my life. 
Our lives. 
 And thanks to my fellow spoonie Lauren for sharing it with me.


It’s a chilly June morning. The cold lights a red swollen fire in my throat and keeps it burning all season long. “I’ve got a virus at the moment,” my sister warns when I ask her if she’d like to join me on a walk. “Oh no, me too,” I reply. I mean, I have a glandular fever flare like last week and the week before, because it’s permanently active. When I expend extra energy, resources my body usually uses to control the virus, things become a fiery hell. A day in bed. It sounds fairly innocuous. But then again, all things seem innocuous in small doses, and I have a full time job now. We made a decision earlier in the year that we would either move to a warmer climate or buy a winter-long supply of the only thing that helps. The thing is not at all cheap, and not at all vegan, but it helps contain the flare radically. We ship it on bulk from the US. It is made from a calf’s thymus gland, a protein that my immune system needs more of to fight infection.

But I digress from the cold morning. I hustle to eat breakfast, tidy up the lounge, have a shower, because I have to lie down at 8.30 am with the poppet. Aurelia sleeps radically better next to a human, and we made a decision to stop the cot fights and fails, and co sleep for now. I only resent needing to nap with her when I compare to the women whose babies sleep alone, in cots. Comparison is especially the thief of joy in parenting. I know some mums get ten entire minutes to sip a hot drink all by themselves because they share it on social media. I fantasize about cleaning the bathroom without my often groaning spectator. On the weekend I was whittling through the flesh in my lobes, trying to re-pierce my neglected holes because my morning slot is a mad rush to get up and get back to bed.

Neither Aurelia nor I believe that we need to go to sleep at 8.30 am. We lie down thinking this is quite unnecessary, and that of course we can both stay up all day. But in a few minutes she surrenders, and as I surrender to mothering her in this manner, a sleepiness I could have sworn I would not feel, creeps into my eyelids. Maybe this isn’t such an encumbrance after all. Maybe this is actually the perfect thing.
The irony does not escape me. I feel a lot worse on days where I busy myself in these sleep slots. My baby, whose sensitivity and high demands require more hands on mothering than I’d expected, her needs also force me to lie down twice a day. An unwanted, frequently bemoaned, and yet vitally restorative practice. I do not believe in random events, and I thank my Creator for the silver lining.

I sense that silver linings are woven into the universe, and with time {sometimes many years}, and a softness of heart, we glimpse them. Closer to home even than rainbows and stars in the dark.

I grieve winter’s effect on me, but when spring arrives and we drive through the country and buy our first jonquils for the season, I swear I am happier than most. I get a relief+joy cocktail appropriate to the degree I have suffered.

Having a sensitive daughter is similar. She asks for physical contact all day and all night, and when I recoil from the intensity, I remind myself to lean in rather than pull away from her needs. People everywhere try to procure smiles from her, as she holds her face with porcelain solemnity. They would like to hold her but she dissents loudly and clams up, apart from with one person she knows well. Later in the warmth of our lounge we are privy to the hugest smiles, most adoring eyes, scrumptious cuddles and giggles. That leaning in to meet her needs for security? It is rewarded with the most exclusive view of her true person. The smile she gives me when she wakes from her nap to see me lying next to her? It’s like the golden sun coming out, not even behind a cloud.  

I’ve written about my closeness with Ben, and the chance I’ve had to learn to sew, the unexpected light in the pain and isolation. I love that I must always be fit and healthy because of my diet and exercise regime. The friends I’ve made through computer screens are intuitive, sensitive, compassionate and suffering women who I will love for all my days. Being awake while operated on has been my worst fear for a long time, but even that way of birthing came with a strange glow of empowerment after surviving the ordeal. I didn’t realise till Aurelia was born that having a tiny baby, while complicating things immensely prenatally, also meant that she would be my tiny baby for a lot longer than usual, and it delights me.

But there was one sizable cloud that didn’t appear to have a silver lining. I have long wondered what the point of my education in music and ballet was, once my body brought it to a close. The hours and years of dedication seemed to be a snapped branch. Did it have a place in my life beyond a wistful memory?

Only years later do I see that without the richness the arts bring me daily, I would be even more prone to despair. Sustaining my mind in a long illness; this is an immense value. I don’t want to end my life so much when I have danced around the lounge to Tchaicovsky to Aurelia’s delight, when I have listened to a composer’s representation of all the emotions on the human spectrum and felt understood, seen myself in the characters I read of, been transported in these books to harder eras, and breathed in perspective. If education’s purpose is to enable us to live a rich, abundant life, then that richness is beneficial all the more when we move into a barren place. That richness is sustaining life. Susan Shaeffer Macauley shared in her book this quote: “Education is a matter of the spirit.”
I know this now.

I want to get up even though I hurt, and smell the ocean again, and create a garment, and read another poem, and hug my scrumptious baby, and eat more cake. I think that there is an iridescent lining attached to each crushing cloud.

“There are always flowers for those who want to see them.”

Henri Matisse