The Morning After

The nights are long and lonely when disease takes its place in your bed. All lyrics in centred italics are from Meg Myers ‘The Morning After’. I encourage you to listen as you read, it is beautiful.

With love and light,

Jess x


I couldn’t sleep last night
There were lions and bears tearing you from my side
I couldn’t sleep last night
How you look like my daughter
It’s burnt in my mind

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It’s two am. I cannot sleep tonight. I did not sleep last night. Nor the nine calendars before that. As my fingers grope at keys under the light of cheap globes and a lazy moon, the world sleeps. How I envy them, wrapped in the sheets of the genetic lottery, perhaps a gentle fuck before their lashes went to bed. I’ve not a lion. Rather, a bull headed golden retriever snores contentedly upon my twisted, blanched, ten little piggies. She does not blink, for she doesn’t know any better. She’s only one year old after all. If ignorance was bliss, than she inhales continuity, a familiar sob from above. This is good. This is familiar. This is home.

And she sleeps.

The lions pace, taunting, tracing their claws across my skin. This is no Lion King. There will be no songs, no crazed baboon speaking in tongues of Yoda and Buddhism. Pick a piece, any piece. They’ve a favourite of course, like any good butcher does. Hips. Spine. Knees. The pack takes their turn. It is a merciless and longing death. They relish in my gasps, their skin puckers. My pain is their pleasure, and my pleasure is never to be without pain. There will be no gentle fucks tonight.

Sometimes my belly swells. Paralysis, or so they tell me. If I am indulging in a particular depth of sadness, I will picture my daughter within, and stroke my burgeoning belly. It’s never to be of course. The truth still stings, just a little.

And I can’t feel anything the morning after you
And I can’t tell anyone the morning after you

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Of course, I can feel the morning after. I feel everything. The burning lungs as I strategically free parachutes of bloodied clots above the plug hole. Last time I stained the sink. As dictated by the seven stages of grief, they choke on shock and denial. No matter how much one readies, the burn of copper remains a shock to the tastebuds, a smack of dirty serum across the tongue. Next comes anger, concaves of calcium screaming in protest. What the fuck do you think you are doing? It would be easier to stay in bed. I’ve never been one for conflict after all. But I must eat. I must bathe. I must study, I must make love, and I must try to just do life. Some days it is a bigger ask than others. My joints threaten, cursing, insults of detriment hurled towards me with every jagged movement, every partial dislocation. I was only trying to butter some toast, I counter.

I bargain, like usual, typically with a God whom I no longer believe in, let alone rely on. ‘Just get me through the day without feeling an overwhelming need to shit my pants, and I’ll be a really, really good person. Not Mother Theresa level good. I like sex too much. But a really good person none the less. Just don’t let me dislocate/haemorrhage/vomit/shit/faint, and I’m all yours Homie G’. 

The TV flickers in silence and I flit into stage five with all the ease of a stretch.

Then comes depression and detachment. I detach in the most literal sense, bones slipping from their beds with a gag inducing clunk. I am rumoured to have killed boners with a mere hip dislocation. Sometimes it can be funny. But not today. I need to drive today.

Two scoops of caffeine, four scoops of sugar. This is my permitted daily allowance. Anymore and I am tachycardic. Any less and I am without the hallmark signs of being a fully fledged adult. I curl in my nest, Golden Retriever Mom mug curled in my finger tips. I have even forgiven the Americanisation. I could cry. But I don’t know how to anymore, not unless it’s really bad. So instead I wish to be sad, hunched over a sofa that is freckled with golden retriever hair, with the realisation that yes, this is my life.

Well shit.

I couldn’t sleep last night
You were chasing the birds till the beast caught your eye
I couldn’t sleep last night
How you look like an angel
It’s burnt in my mind

I can’t feel anything the morning after you
I can’t tell anyone the morning after you

And I hope you sleep with a merry gold
I hope you win it this time
And I pray you don’t fear the animals
I’ll save you, I promise this time

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If you do not live in my world, understand this; There are no Marigolds. There are no bursts of afternoon, and there are no capes. There will be promises, but they will not be kept. Most of all, there will be no miracles. Marigolds and Miracles are not so different after all. You can plant as many as you want in your Etsy mason jar planters. But you will grow no miracles nonetheless.

What is acceptance? Is it resignation? A celebration? Or a total and utter cluster fuck? Here I am, here’s my shitty life. Make of it what you want. Just don’t shove lemon detox diets down my throat with offers of fairy tale endings and pretty dreams. I suspect that my acceptance is a combination of all quadrants, paint mixed and poured on top of one another until you can no longer recognise what you began with.

Sometimes I fear the animals. Sometimes I am scared, and sometimes I am vulnerable, and sometimes I just want to cry. Sometimes I just don’t want to have them tear my hips apart, necrotic teeth digging into the depths of my resolve. The pain scares me. The vomit scares me. The shit scares me, and most of all, the nights scare me.

I did not sleep last night. I will not sleep tonight. Nor will I tomorrow. You will never know the depths of my contractures beneath the sheets, unless of course you do, because you already live it. And in that case, I do not hope you sleep with a Marigold, and I do not hope that you will win. I will not pray that you fear not the animals, and most of all I will not promise to save you.

Because just quietly, we both know it’s bullshit.

I just hope you get a little rest tonight. We just need a little rest, that’s all. Then we can get up, and do it all over again tomorrow.

It’s worth it, after all.

10 Things to Know When I am in a Flare

dodge a wrench

On New Years Eve, I was at the beach in Geelong with my best friend, who we shall call Shelby*. Together we watched the fireworks at Midnight, as they echoed around the pier. As the fireworks drew to a close, we began to walk back to the car when PSTTOOOOOHHHH.

Some cock head decided to shoot a flare.

So naturally, I did what any best friend would. I grabbed Shelby and shouted ‘YOU ARE IN THE NAVY. YOU SIGNED UP TO SAVE OUR COUNTRY’ and used her as a human shield.

To say that this has bought about a fundamental change in our friendship is an understatement. Shelby now eyes me with the same level of mistrust as my brother now eyes Pork Sausages, since the Great Food Poisoning Incident of 2014.

This is the usual kind of flare that is well understood and recognised, albeit one should not have to recognise it as it hurtles towards your head (or your best friend’s head). But when you have a Chronic Illness, a flare takes on an entirely different meaning, and one in which you would preferably take a standard flare to the head rather than have the Chronic Illness Flare.

Flares are different for every single person living with a Chronic Illness. No one understands this better than my Dad, who lives with both myself and my Mum, who is Seriously Ill. In one hour he can have me attempting to choke down a sip of water while Mum inhales the contents of the pantry from Prednisolone cravings. This list is relevant only to my own individual experiences. If you take this to be the Chronic Illness Flare Bible, then I am not responsible for anything that happens to you (including someone shooting a flare at your head).

brace yourselves

1) Do not bring me food. By food I mean anything that has the potential to be ingested, even incidentally, like toothpaste. Flares for me mean vomit, and lots of it. Alternatively, it can mean that I have as much control over my bowels as I do over the gravitational pull of the moon. Some people during flares cannot stop eating. I just can’t start. This then spirals into Dad trying to coax bits of mashed potato into my lips and sticking straws up his nose intimating the naso gastric tube that will soon be mine if I don’t gain some weight. And all the while I have Mum death staring me in the midst of her Prednisolone binge.

2) I am probably going to be high. Like, all of the time. I am anti drugs. I have never even smoked a cigarette (Although I did once snort some Wicked Fizz if that counts for any street cred). But the Morphine, the Oxycodone, the Mersyndol Forte and whatever else my doctors want to pump into me are going to get me higher than my standards in men. I would like to apologise for anything I have said, and will say, while I am high. P.s I think I’m in love with you.

3) I will also probably be a bitch. Anyone that knows me would describe me as one of the happiest, easy going people they know.

Until I fall into the Pain Hole. That’s really not as sexual as it sounds, I assure you. When my Mum began treatment induced Menopause, my Dad devised the Menopause Alert Siren. This effectively involves Dad making an air raid siren and diving for cover under a piece of furniture. Having discovered it’s comical value, Dad has now applied this to my Bad Pain Days. I am irritated. My tolerance is at an all time low. I am overtly sensitive to physical stimuli (Can you fucking speak a little fucking quieter?). Lights are too bright, the TV is too loud, and you are guaranteed that you will say or do the wrong thing. P.s Fuck you

wavy man

4) I am extra bendy. Hormone levels increase dislocations and subluxations in people with connective tissue disorders. Hormone changes also make you a lot sicker. This ends up ensuring that when you are at your sickest, you are also at your stretchiest. At the moment I am in the middle of a nasty flare. Last night I partially dislocated my hip pouring a glass of orange juice. Not only am I vomiting/shitting/swearing/high, I am also probably on crutches and waving my arms around really awkwardly cause my shoulders are popped. I am effectively just an inflatable waving man on Endone.

5) I sleep, excessively. Ask anyone with a Chronic Illness and they will tell you that fatigue is one of the worst symptoms they experience. There are three levels of Flare Fatigue.
1)I cannot shower myself
2) What is life
3) I can see sounds

No matter how much you sleep, you do not awake feeling refreshed. But you cannot do anything else, so you just have to suck it up and know that you are missing out. Which brings me to my next point.

best friend order

6) You probably won’t hear from me. I am too unwell to meet you for coffee. I am also probably too sick for you to come to me for coffee. I will not call you, and I probably won’t reply to your texts or Facebook messages either. It isn’t that I don’t want to, it’s just that I don’t have the physical capability. Alternatively I am convinced I replied to you and think you are being really rude by not replying…

7) But I still get lonely. Even if I am too sick to reply, to hang out, to speak, message me. Send me a text with a photo of a Golden Retriever, just say ‘thinking of you’, or shoot a flare at my window. Just let me know you are still around, and that when I am feeling a bit better we will catch up.

8) I am behind everything in my life. This means Uni work, paying bills, cleaning, doing washing, showering, medical appointments, socialising, grooming the dog. The sicker I get, the more I stress. The more I stress, the sicker I get. Offer to take notes for me in class, to drive me to a doctor’s appointment or to just visit me for half an hour and play with my dog. I have a cute dog, so you will benefit also.

two goldies

9) I forget. When you have a flare, it becomes impossible to remember that it will ever get better. I panic, and think that I will never get back on track again. There is no feeling so frightening as believing that you are in an uncontrollable spiral, a flare hurtling towards two women on a jetty, and that things will never be okay. Be there to help me remember. Remind me of all the flares that have come before, and all the ones that I recovered from. Give me perspective, and show me that you remember, even if I can’t.

10) I will be okay. Ultimately, this is the most key point. Sometimes I keep a complication from a flare for the remainder of my journey, other times I don’t. At the moment my vomiting is finally begin to ebb, the lobster allergic reaction rash that covers my torso from ECG dots is fading into a pink, and today I managed to do some pilates. As long as I know that I have you there, flare or not, I will always be okay. Take the hit of the flare with me.