i was seen // hangover diaries

When I was little and sick, my mum would fetch me a snuggly quilt, make perfectly crisped toast, sit by my bed and pat my back so soothingly that one day I would try to emulate that exact motion for my own young. Having your mother sitting there is the gold standard of being unwell, and it's harder to find once you grow up. You're so seen and loved in your pain when you're small. Symptomatically alone, but that's where the alone stops dead. There's no emerging from your illness and being asked "where were you? Oh you were in your room with a fever for three days, I didn't know." Nope, she's seen every limping trip to the toilet, and passed you water the whole time.

But now I'm grown, and no one is patting my back.

My cushion is damp. I have watered a lot of cushions and pillows these eight years, preserved them in salt. I don't soak them with gushing waterfalls anymore, because shock and grief have mutated into sober familiarity, a mellower, gentler beast. I sometimes think it's unnecessary that it still trickles out...like there is a pool behind my eyes called 'chronic pain' which ought to be empty by now. I cry the exact same tears, the cause is unaltered, and the emotions have long been acknowledged and disected. My pool seems to have a refill mechanism when I'm lying quietly, and my body is raging ungratefully that I participated in life outside the home. How dare I. I was once asked, "but can't you use less energy when you're out? Tone it down?" No. I can't. It tumbles out, my small supply, and I watch by in trepidation, powerless to gain more power, or prevent loss of power. Powerless to prevent my own suffering.

The droplets are salty, but the salt isn't bitter.

The droplets are more, this is disgustingly uncomfortable, as usual, as expected. It's just as I knew it would be. It's identical.

No one can see into the misfunctioning cells, muscles, sense of balance during the time or afterwards. It's in the dark recesses of me. I can tell them, but it's so dreary and morose I can barely be bothered, so I will just feel it myself. If I'm not seen by anyone in this time, if no one can imagine my pain or view it, let alone cure it, how alone I am. How nobody I am in this moment. I must lie and wait, wait till it eases, invisible, feeling helpless and dispensable...but for my all knowing, all seeing, sky painting, language making, human weaving, gift giving God. So I am seen, I am not forgotten. I am as legitimate and valid as a mother's sick child.

This thought is warm and luminous.

On my porch this hungover December, hungover from festivity-x-suffering, sat a large woven basket with my name written on it. I unwrapped a large sheet of fabric encasing the contents to find no ordinary pre-packaged hamper. It was filled with home-made cake I could eat, home baked cookies, and crackers, and hummus, and bars. Sparkling water, tea, soap, berries, every conceivable festive, delicious and healthy thing in sweet pottles. It contained every special treat on the menu to those with sensitivies, many un-buyable. It was a bottomless pit of seriously thoughtful time consuming gifts, brimming with every thing I hadn't shopped for and hadn't baked and wasn't going to.

The note was from the mamas in the group I don't go to. One of the harder things all year was seeing and knowing that women with babies were meeting in groups and I couldn't manage to because - well, I had to nap twice a day and it fell during group times, and if I used energy seeing people I couldn't make it through to dinner time. The usual complicated trickle down of Chronic Fatigue Syndrome.

The note said that they dearly loved me. They barely know me, they haven't seen me enough. I have been missing from their times together, they met dozens of times times, and I tagged along twice. They're talking about the verb - to love.

To extravagently love someone who has done nothing for you.

It would be easier to make a huge handmade hamper for a person they had grown fond of all year, but no.

That hamper said: You are so seen. You are no outcast.

It was the most overwhelmingly golden standard, in adulthood - love, because they also know the "you did nothing for this, but I love you" kind of warm luminous love.

to all the complicated ones

To all the people who like things to be perfect, who notice crumbs and stray hairs (and attached hairs with juicy roots) and endlessly remove them, then wearily re-remove them when they re-appear and try not to despair, but do.

All the people who notice feelings, their own which are bursting, or morbid, then moderate for a second, too short, then back to extremes. 

And all the decisions which were chewed to peices because there is always some losing in the winning and why must there be...this imperfect business is hard to accept...

And all the words which scurry around in heads from all the conversations, their own imperfect words, and the other person's words, the clashes and the synchrony, and the general mayhem of chasing them off to bed when they will not go, when they are still perky at 1 am in the morning and show no signs of settling down at three. 

And all the vibes between the words which are far peskier than the words themselves.

All the people who have strange rituals and want to kick and scream like two year olds because it all boiled up and spilled over and left them worrying they weren't quite right in the head, when they don't need an asylum at all. 

All the ones who have a reliable intuition, and know when they know.

All the plans for a perfect date which end in graves of dissapointment.

The ones who can't pick up the phone when it rings, and can't believe that it was engaged when they had finally psyched themselves up to call, the ones who get nervous on their way to friendly gatherings, nearly faint as they walk through door ways, and endure pounding hearts when the door bell rings. 

All the monotone skies which shouldn't affect the will to live, but do, and all the while sensing that many people aren't feeling all these things quite so acutely and aren't finding existing quite so hard. 

Then all the flooding self recrimination for being sensitive to skies and hormones and persons and medications and changes and things.

All the people like this are aware and raw and gentle and fascinating and worn out - its horribly uncomfortable, but goodness gracious me, you are my favourite of all and your presence is a balm and my feelings for you are not moderate at all and my intuition says we were meant to be on earth at the same time to comfort each other.

post captivity complications

I don't want to say that I'm an efflorescent butterfly because then people seem to say things like 'I'm so glad you're better forever', and 'Now do every thing because you're a butterfly'. And then they get shocks like,
'But you said you were a butterfly, yet you seem to be in a cocoon, I'm so confused, did you mean moth?'

Life is in, out, up, down, waxing, waning. Serious waning for all us crescent moons. But we wax too, and I am increasingly convinced that we must not only converse about our woes if we want to accurately share our lives. There is a time to bawl and a time to squeal.

Some days, I'm a butterfly. After being a guttingly grovvely caterpillar for two years, it's surreal. I'm a butterfly, in the way that a clip-winged butterfly can be, if I'm calm and gentle, ever so calm, ever so unstimulated.

I don't quite know how to feel about not waiting by the window in a crumpled mess for Ben. For getting his message "The case has gone over I'm sorry, I'll be a little bit late," and thinking, well that's ok, I'm still able to stand, I'll chop the beans. I don't chop food, so it's a bit weird. I did the dishes, cared for my child, strolled for an hour, and chopped beans? Then I sat up (versus slumped on the couch) to eat dinner, in our sun drenched dining room.

It's a bit too glorious to feel that okay.

The trouble with butterfly days is this: I know it won't last and minute shards of sadness zoom around because I want to feel like this forever, because the relief is too excruciatingly nice, and the contrast seems all the more glaringly piercing.

I'm a living oxymoron when I'm euphorically pain-free, because my heart physically aches.

Is it actually good for a bird from captivity to fly in the expansive sky and then be returned to its cage? I lean towards, yes, its better than captivity it's whole life. But oh, going back in the cage.

I didn't know if other human beings also feel what I'm inadequately describing, for it doesn't come up in conversation.

But I found the answer to my question in a book I recently read:

Perfection is beyond the reach of humankind, beyond the reach of magic. In every shining moment of happiness is that drop of poison: the knowledge that pain will come again.

Dumbledore, J.K.Rowling


I had an epiphany reading that: I am seeking perfection once again, this time in emotions. Perfection is truly unattainable and mixed emotions are not my solo struggle but a universal reality. I always feel that the earth embodies these realities, and weeds springing up by daphne and jonquils and jasmine is proof.

The weeks that followed this passage were ones where I mulled and ruminated, granting myself permission to feel relief with a sprinkle of grief for the past and future. I felt a lot more peaceful once self recriminations for heart shards were removed. I thought, perhaps every joy is tainted because of the fallen world? It struck me as a fairly miserable thought, that every happy moment had to be part sad. I needed more reliefs and elations to test the theory on.

Out of the hopeless blue, one arrived. Our impling slept for nine hours in a row. No letters to warn me of her plans, no gradated steps. In this matter of sleep, I had finally annihilated my expectations, because it was the only way to be content. I had decided that the poison of expectation was not doing me any good, and I'd slowly picked it all out.

We had goofy shocked faces that morning. 'How could this happen to us?'

She might do it again in another six months I thought with ineffable happiness, high expectation me having done a solid 180.

Two nights later she did it again.

Deep sleep deprivation and ensuing pain will come again, but my joy was weedless, and curiously I don't have a sore spot under my left rib thinking about it. {When I say weedless joy, I refer to the following day. The actual night I lay on my bed worrying she had suffocated and died, and I strained to hear a cry, please, I just needed to hear a cry.}

Maybe heart shards during relief are a peculiar experience reserved for the heavy grief of eight years of mostly unrelenting illness?

Perhaps many joys will be less tainted by sadness, with a quarter drop of poison versus a dollop, with just a lightly held mental recognition of the transient nature of elation.

I cannot curse transient elation, for the same principal promises transient pain.

Nothing lasts forever.

Except eternity, and I have a feeling I will never tire of an earth free from poison.

chronic milk making

While I was pregnant, women who had raised babies themselves, and knew how under powered I was at the best of times, they must have felt a serious twinge of fear on my behalf. I remember clearly conversations which went like this,

“And don’t feel bad if you can’t breastfeed, because your health is more important. It’s ok to give formula. And colostrum {milk with extra super powers in the first couple of days} is amazing all by itself, even if you do a couple of days that will be great. ”

And I would say, with my lips, “Yeah, I will let that go if I’m really not well. I won’t beat myself up.”

But my heart was not in sync with my lips. Not remotely. I didn’t want to sound like the naïve new mum I was, spurting forth her untried opinions, so I kept my opinion to myself. But my opinion was that I would rather give her the best immune start to life and suffer myself for a year. Breastfeeding cannot prevent a baby from getting a chronic illness, but it’s the first gift of health I could bestow on her, and there has never been a gift I’ve wanted to give more because I’ve never loved a girl more.

I knew that even my well mum had been run down and needed daily sleeps whilst sustaining another life with her milk, so while determined, I was not expecting an easy ride.

A couple of weeks before she was born I started to express colostrum drop by drop, on the advice of my private midwife, because I might be away from her for the first hours, and because it’s a powerfully healthy thing for a newborn. I arrived at the hospital on the day of her birth with ten filled syringes to be put in the fridge, to the surprise of the staff who don’t usually see or encourage women to do this prenatally. I thought my hours of work and patience extracting each milliliter might last a while – so I was partly horrified and partly chuffed when I heard the doctor had given her all ten syringes at once, as soon as she arrived in Special Care. I had been her first medicine, even though I was still lying on the operating table, and that was worth it.

I was extremely blessed to have good supply, but I soon had to call upon my iron determination to feed because after a few weeks of decent times, things got bad and stayed bad for about four months.

In medical speak, I had recurrent white spot (sounds cute, feels like hell), recurrent infections (this should not have surprised me, infections are my specialty), vasospasm on one side, mastitis, and regular blocked ducts.

Four months feels more like four years when you’re breastfeeding, because young babies feed around the clock. So frequently that the scabs would just dry out a bit from the last feed, enough to make the next milk extraction excruciating, but not even close to healing. Then I would feed, the scab would be re-opened, and the cycle repeated. It was like being cut open with a knife regularly without anesthetic, day and night.  I had to majorly psyche myself up before her feeds, really prepare myself. I tried everything to ease the pain; every preparatory step before bringing her to drink - but from the moment of latch, I would frantically pound the floor with my foot and moan. I would try to breathe, but it was more effective to beat and groan, to try and stifle the murderous sensation with other sensations.

Ben wanted to be with me in the pain, he wanted to comfort me. But I was in a fiery hell of sensation, and would have been borderline violent if he tried to put a comforting arm around me. Maybe not even borderline.

I would say through gritted teeth after preparing myself to feed her,

"Ok. I'm about to do it. I'm getting ready. Can you just sit in that chair over there. And pray. And don't talk to me!"

And he would sit there silently, and watch me cry and groan. I needed him there rather than pottering around painlessly in the kitchen. I needed to know that he was sharing in my pain as I fed our girl, even though he couldn't take an ounce of it away. 

Sometimes I would express milk instead because I needed to let more healing occur and I emotionally could not handle another strong suck. But as she grew older I couldn't express enough for her whole feed and had to supplement it with my freezer supply, and it wasn't an effective emptying method so I would soon get blocked ducts and be forced back to letting her latch. 

One day a nurse taking my swab told me that she doubted I would be able to heal while continuing to breastfeed. This woman who was not a feeding expert and ought not to have shared her personal opinion, she preyed upon my greatest fear. 

I went home and talked to my Mum. My own mum had been damaged, and kept feeding, and healed. Then I talked to my friend, who had healed while still breastfeeding. Next my Lactation Consultant, who said that every person she knew who really really persevered had gotten through. And Ben, he was going to sit quietly in that armchair, and not make a sound.

I could not see for the life of me how healing could occur while each feed undid the scabbing. It seemed impossible to me. So I left that hope and belief to people who had been there themselves, and set to work on the only path possible for discomfort. 

Right now, present moment.

I focussed on getting through one feed, however bad. 

Then celebrating. Walking around the house feeling the light delicious emotion of relief. 

One hour later, relief giving way to dread. 'Can't go through that again,' circling in my head. 

Baby crying, obligation reigning, going to that awful place again. 

And that was how it passed. It wasn't a calm, breathing, full of hope affair. There was no bonding with her, no staring into her blue eyes with a smile. I was channeling psycho, moaning, arm flapping, mega-tense mother to her while she drank. I was gritting my teeth and only half believing that deeply ingrained phrase that the only way out was through.

Through I went, as Ben quietly watched and acknowledged and other people voiced the hope I couldn't feel. I couldn't write about it because I was submerged.

Concurrently, vertigo had entered my life at two weeks post partum. Vertigo took from me one of the senses I had most taken for granted, and assaulted my will to live. I didn’t even know that looking out the window and seeing a stable picture was one of my favourite things till it was gone. I didn’t realise that lying in bed with your eyes closed and feeling completely still, that is of the life’s greatest luxuries. Life was simply undesirable when there was no peace; a constant moving haziness which made me feel ungrounded and woebegone. 

At the time we didn’t know if vertigo was due to breastfeeding, or being up in the night. I assumed it was both, a muddy combination of two things that my body detested.

Occassionally I wondered if I weaned, would my nemesis vertigo leave? And would that be a wise decision, to be a more well person, wife and mother? If someone could have promised me that weaning would take the vertigo away, I may have weaned. But because I didn’t know, I did not want to wean and receive the rude shock that I still had vertigo, and my milk (and baby whispering powers) had dried up.

After four or five months, feeding became pain free. It happened gradually. At first there would be a day with no infection, no white spot, no blocked ducts, and then after the next bout of trouble I’d get a longer pain-free stint. It happened just as I had stoically and tragically realised that I might have to feed in agony for a whole year. I had lost hope that my pains could ever be ephemeral. I knew few women who had experienced problems for so many months, so I assumed I was stuck in this forever. I thought darkly that it was classic me to have a plethora of issues and chronic pain. I also avoided talking widely about my issues because I didn’t enjoy being told that it was ok to give up – I wanted to be encouraged to persevere.

Now the vertigo is like the tide going out at the beach. A lot of the time it is receding, but sometimes a wave lands high on the shore and I wonder whether the tide is actually going out after all.

It is always precipitated by extra use of energy, or sickness, or the baby waking frequently at night.

I still breastfeed regularly during the day, and once or twice at night – similar to the early days, and so I can finally say for sure that breastfeeding was not the single reason for the vertigo. It can’t have been soley night waking either, because I have not slept through the night for twelve months straight, yet the vertigo continues to ebb away.

I imagine it was many ingredients all smooshed into one eruptive mound: being up for long periods at night, producing so much extra milk initially, recovering from major surgery, the immense energy given to adjusting to a completely new life of work, and my body restoring itself after carrying a baby. 

The fight to feed has been rewarded many times over, with this ability which makes mothering easier for me as an unwell person. I continue to be in remission from POTS, a result of pregnancy and breastfeeding; I take hot baths without fainting and stand without blacking out.

I groggily feed her whilst still lying down myself for two minutes in the night, and she falls back asleep. I leave the house with nothing in my bag for her. I calm her tears and she pops off with a happy smile on her face. I read how good this milk is for her, I read that I receive an oxytocin hit every time I feed her. I hear people talk about how it’s odd to feed a baby who can walk or talk, and again I quietly hold my opinion inside. I fought to give her milk and I’m not about to fight to end her enjoyment of it. If she can verbalise how much she loves it, all the better. For now I am perfectly content with the spontaneous claps she gave me last week as she drank. 

Mindfulness

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:

https://www.futurelearn.com/courses/mindfulness-wellbeing-performance

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...”

No.

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.

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.

Alive. 

You have alive! 

And alive is meant to be here,

and meant to be here is purpose,

and purpose is go on. 

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.

None.

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.

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.

unexpected

source

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

let's all wear my shoes

we will fight, we will kiss

I often wonder what the world would be like if everyone was like me. The first conclusion I come to is that there would be no ‘everyone’ because we would be too ill to work for food, and would have starved to death long ago. The unfit do not survive.

After I have finished with this sobering thought, I move on to wondering hypothetically what it would be like if society wasn’t designed for able bodied people, because that is where a significant chunk of my discomfort comes from. The energy packet and lifestyle of the majority is completely out of kilter with my own. Imagine if society was constructed for a different set of humans.

One of my parents, whom I love dearly, is celebrating a significant birthday this year. I was fully expecting the festivities to occur from twilight onwards. This is a lovely time for most to celebrate, after work, over the heartiest meal of the day, lingering on into the night. I had already decided that I was willing to suffer for this. Headaches, insomnia, vertigo, exhaustion, a few days of dysfunction. And then the invitation arrived, and it was for a 10am brunch. Joy erupted inside me. My first thought: oh my goodness, I don’t have to add extra pain to my already pain?! Of course there will be pay-back for the day event, but not to the degree there is for a night event, an event that begins when I have accumulated an overwhelming need to lie down in dark silence after being up for eleven hours already. People have every right to invite me to celebrations that work best for them, just as I have every right to decline and preserve the health I do have. But when they have considered me to a significant degree, that warms me right through to my fingertips. They care about me too. That is exactly when people like me would have their celebrations.

I have been very isolated these past seven months, because of that vicious post-baby vertigo. My sense of missing out has been strong. One morning I decided I could not endure another moment in my dull home with my moaning-myrtle infant, and I went to hang out with my friends from church as they do every Friday. For the first thirty minutes, it was so worth it. I was like yes, this is what I need. Two hours later, lying on my couch, vertigo, unable to care for child, I vowed off the experience. It had been a welcome distraction but the afternoon consequences were too great. I couldn’t afford to suffer that much. And if I had stayed for just half an hour, the part where my body was ok? Well, then I’ve only just arrived and barely settled in before I bluster out. I felt afterwards a stabbing envy that my friends were going home with their babes in tow, and probably getting lunch for themselves, probably even cooking dinner for their families, something I haven’t done in years. I couldn’t even feed a puree to my baby after going there.

The isolation hit me in the face. I crave companionship, but companionship doesn’t come in my size range. It comes long, frequent, and inoppurtune. I could come and go in a manner which works for me, but in my ideal world, I am not the odd one out, always sticking out like a sore thumb, always modifying because the default is not made for me. My utopia is a place where social interactions are designed for bodies like mine. A place where I am not perpetually the uncommitted no-show. Surviving with very little face-to-face friendship, or suffering for what I do partake in, this is one of the most awful parts of chronic fatigue syndrome.

How would people like me get their companionship?

We would meet in very small numbers, fortnightly, in an open air park. To remove the intensity of walls, confined spaces, fluourescent lights. We would meet for an hour, maximum, reclining if possible. We would never meet before 10, or after 4. Maybe we would come by taxi. By broomstick would be nice. We would shop at markets and naturally lit street shops, not malls. We would rest in coffee shops with day beds while we were out in winter, and on the grass in summer. Actually, no, it would always be spring. Maybe we’d all send a message to each other after we’d caught up, saying we were thinking of each other as we recover, reminding each other that the pain wouldn’t last, and it was worth it for our spirits.

The strain from not fitting would be gone, even if the rest wasn’t. The rhythms we formed would be custom made for our abilities, and it would be less lonely.

But, I wouldn’t wish this on my worst enemy.

Let alone the majority. 

not to be pitied

from here, via pinterest

"Sometimes I feel like we are the lucky ones."
We lie in bed before he slips off to spend the night tending to our offspring.
"I think that too."

He had just applied to drop back to part time work for six months. At first I was dark and brooding over it, the fact that ill health was robbing us of societal normality once again.
Us, not just me. That made it even worse.
It passed, like an angry cloud, when I saw the sparkle in his eye.

We have thought for years, there is a significant upside to living in the slow lane, keeping life a gentle pain-managing whisper. We have many an hour on our couch* becoming closer than we ever imagined, more united and delighted with our companionship, more than we could have if my body roared all day and into the night. It trickles down into the next generation too, time and ensuing fondness, which exists away from the hurry and scurry.

Sometimes the miserable path where you get stabbed and almost beheaded by an onslaught of low lying branches, has magical foliage not found on other paths. We get time and closeness.

Not a creative career, not as much money, not many pain-free days, but something so lush. '

* sans tv, is the key

i want to be the mother

Motherhood is taking the most vulnerable little person under you wing, and keeping it safe and fed until it’s ready to venture forth. It’s giving and giving and giving, when you long to be admitted into the hospital and nursed yourself. For someone who has struggled for many years just to shower and feed herself, it’s outrageous to turn around and give my sparse feathers up to a scrap of babe. I’m shivering, wanting to be wrapped up, but giving that blanket away. I sometimes groan, ‘I want to be the baby’. I get occasional bouts of jealousy. My friend has abbreviated it to IWBB, for ease of use in messaging {also known as mother’s group for the sick}. Who wouldn’t want to be fed, hugged, bathed, carried and gently popped to bed on repeat? That’s all any sickie ever wanted.

Apart from getting better.

But really, actually, not very deep down, I want to be the mother. IWBM. It’s painful yes, but strangely cathartic. I am the carer, for once. I get to love on her the way I want to be loved when I am a vulnerable inhabitant of a painful body. When I fold my arms tightly around her, I am stronger than my illness because my heart is acting. My heart is what motivates my aching arms to respond to her cries for me, and bundle her up. I like that there is more to me than pain and disability. There is fierce love. Sometimes the two wrestle it out, and the pain punches my heart and tells it that it is stronger and I can’t give anymore. I can’t give with vertigo, I can’t give with fatigue. But it underestimates the heart. I haven’t had to grapple with parenting books and styles. It’s instinctual, and it has been shaped by what I have learned through my walls being broken down and becoming weak.

It’s gentle. There is enough life ahead of her brimming with disappointment, raised levels of stress, tears. I will nurture her like she will only be an innocent baby once. Ben and I mock parenting labels, but then go ahead and name our style ‘low cortisol parenting’. Or shall we paraphrase it with this sleek version: ‘Actively minimising adrenal stress in infants because life gets hard fast parenting.'

As she grows she will learn that her mama hurts, that every family is a bit different, that her well papa struggles, that not every smiling face is feeling fine. She will find that life is messy, imperfect, uncontrollable, and at times downright miserable. But the answer to the sadness is love coming vertically from above, and horizontally from us. And it’s tender. It lessens pain; it keeps me soft instead of bitter. It lets me give when I’m hurting. It’s the reason that I want to be the mother. 

you don't know that you're toxic to me

A post I wrote three years ago. 

You don’t know

that you’re toxic to me.

Even you, my close friend,

my incredible family.

You don’t see how I hurt

after we’ve talked. As we talk.

How I ache and burn,

How I lie and wait.

You cannot watch,

as I mend myself.

In my private space.

I long to be with you,

you give me joy.

But oh, your humanity is something my body

cannot tolerate. Anymore.

You stimulate me,

violently,

unconsciously.

I leak, adrenalin.

My head, my ears, my heart,

Hurt.

you assault my senses,

overloading me with sight

emotion

scent

presence.

You can’t see my inward battles.

I need you to leave

I feel unwell

Yes, even with you.

But I feel so rude

that I hide my pain.

Or I want to keep talking

despite the discomfort.

I pretend I am normal

but it always destroys my health

a little, or a lot.

I lie to reassure you.

I lie far too often.

I fear telling you the truth,

That your body affects me detrimentally,

of my fragility.

That you, even you,

overwhelm me.

I limit my friends, I can’t always invest

I can’t bare interaction

often, for long.

We ‘need’ to catch up,

that’s what you say.

But those words make me shiver.

No. We don’t.

Don’t oblige me with ‘need’.

Don’t say ‘it’s been too long’.

It’s not long enough, for me,

if I’ve been silent.

You who just wait and gently offer yourself,

when I’m ready.

for however short a time,

without asking for more,

You are the sunshine.

In your patience, your subtle communication,

you restore me

from the terrors of interaction.

You never ask for more than I can give.

You know that you’re toxic

to my body.

I wanted to read it after writing a message today which said something like, thankyou so much for wanting to encourage me, but in person that will exacerbate my pain, can you write it? It's a tough patch. I smile as I read this post, knowing that in the years that followed it, there were seasons where my body was better than this, and there will be seasons again. I smile because now more people than ever know that my body shrivels with stimulation, and they love me despite it. 

 

malaise

nota bene 

Not every day is like this. Some easier, some harder. But days have been like this in school, university, years of no occupation, and motherhood. This is cfs in all circumstances.

So I guess we can get through today because we got through other ones. God help me.

Linger. Linger on every bearable moment. Whenever you can be still, just stay an extra second.

Relief. She is hungry. May this feed last forever. The longer she quietly drinks, the longer I can sit here not moving.

Oh no, a nappy. I’m going to get up and change it, I can do this. I’m going to force my dizzy, headachey eyes to look right into hers instead of blurring out on the white wall. Focus takes focus. And if I smile, can she tell that it’s a physical strain? Can she see the love behind the wasted face it’s coming from? I really hope this smile seems normal to her because it’s abnormally hard to produce.

Fed her to sleep, well and truly, transferred her to bed, all is quiet. No strength for different methods. Now I lie here, and if this could last two hours, that would be two hours of not looking after her, and two hours closer to the end of the day. How sad to count down the hours like this, when these days are precious and irreplaceable. Please, please, last two, it’s the make or break.

No, no, no. Don’t wake. Don’t stir poppet, I love you but I don’t think I can do this. I need to lie here longer. Oh help, I have to pick you up, and even though you’re really as a light as a feather and mini for your age, you are like bricks to my arms.

Malaise, is every cell dying everywhere.

It’s not you, you’re not a burden. It’s me. I’m a burden to me. Physical burden to mental me.

Smile. Sing to her. You don’t have to see the world clearly to pick her up and sing. She can’t tell that it’s strained, don’t let that hold you back. Ok, I feel horrendous. I can call Mum, or my sister if it gets impossible. Tell them my body isn’t working. More water. I’ll carry her to get another glass. Is it worth the trip? Ughhh. No water in the waterfilter. Have to carry it to the sink, so dizzy and wasted.

And now to tidy things up. Move one leg, move the other. This is possible. But this is too grinding. Possible does not mean pleasant, this is awful. I don’t feel like existing anymore. If I said that would people think I’m depressed or would they realize my body is just not functional?  

Just exist for the next half hour. Not the next day, surely you know this by now? Better days will come, there is always variety. Too many Acute Fatigue Bertie Bots Every Flavour Days. What a privilege to have a baby despite the illness though. And to have no regrets, to have fed and loved fully despite the pain. But should we have done this? Stop questioning that. She is meant to be, because she’s so incredible, because she came to be. Stop thinking about the future, each day has enough trouble of its own. I’m tired of worrying I can only endure this once in my life. Why can’t dogs count as siblings for real.

Get the most easy filling lunch possible. I feel bad that its leftovers Ben could have taken to work, or we could have had tonight, but no choice. I leave this kitchen with dishes piled high, unrinsed.

Another half hour has passed. Celebrate inside. Yes. Yess. Not crying yet, maybe we can make it till Ben’s return. But I can’t keep dangling toys and picking her up, my body isn’t working. I can’t do that for three hours more, and the sleeps are over, and what on earth am I going to do?

I’m going to load her into the pram. I’m not up to this, I’m really not. Goodness she looks mini and precious in there, I just love her to bits and pieces. Walk slow, if I could get this to last a whole hour, then it would be late afternoon. Come on legs. No, stomach you are not actually nauseous. Ok, maybe you are, but you can’t throw up here. Look, rotunda in the graveyard, I’ll sit here in this morbid place and simulate walking for a bit.

Home now. Dry retch in bathroom. Drink water. Epic time passing, excellent. Was that easier than holding at home? I wonder. This is the last stretch of the day, we are nearly through, can you believe it?

Standing in the front yard waiting for co-parent. Actually, let’s show her flowers. I don’t want to seem crushingly desperate, so I’ll go inside, and wait at the window instead. He must be here in about one minute. Yes, hello, I hear the garage. Ask about his day while subtly handing him cherubina. Lie in coma on the couch, maybe if I do, I’ll have the strength to feed a few more times before bed.

The problem is, she needs to be entertained while dinner is made. I’m not up to cooking, or baby minding. Takeaway or cry, I’m not sure. Maybe tomorrow will be different, will some strength be granted me before the 1:00 am feed, or the 5.30 am feed? I’m not sure. It won’t be like this forever. I just need to lie. Malaise.

bookshelf fire just happens sometimes

Thanks to a stranger on the internet for articulating things so fantastically well. 

going to the doctor when you're chronically ill is wierd

And, thanks for making me ugly laugh so hard that my five month old joined in. She will get accustomed to seeing me laugh and then sob about chronically crappy health.  

the situation I was in before I got myself an earning husband