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M I L L I E

@millieand.m.e

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I had always been stoic Before Driven Determined To my detriment Gaslit into silence Stepping back Carrying a burden My illness Drawing your attention To the stars And sunrises Away from my tear stained eyes Keeping you Distant From the fatigue Pulling me down Into the ground Barely a float Auto pilot Disassociate Recharge Rebuild Simply do nothing Counterintuitive Effectiveness For so long I thought my role Responsibility Was to trial and error everything to get better Yet the responsibility Care of doctors And specialists I sought At barely 16 Said you have youth on your side Get some fresh air Eat well And f#cking exercise That precious Delicate and budding thing Was clipped I had bone pain Equal to our grandparents In their 80s By body screamed for sleep Like a newborn babe And yet my body was changing Making me fertile To carry my own Another milestone To be put on hold You don’t have a place You’re in between You fall into the grey areas That society rarely Or does not want to understand Dynamic disability Duality Varying severity But most cruelly What is not seen Is those of us so unwell Heartbeats Breaking the silence by @millieand.m.e
20
2 years ago
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I have met Some of the best people I know on here Under aching reality’s You are kind, intelligent, empathetic, resilient, grieving, worldly, lively, Emitting a beauty Spoken through mutual understanding Words and meaning A shared language Our phones Illuminating the globe You offer soft words When energy is our most Precious resource You take time To say I’m sorry Take care I’m sending love Because a flare A relapse A small fluctuation Is a setback Some say a few steps back But this illness isn’t gentle In launches you into a world Where you are now disabled But instead of people averting eye contact at your missing legs They judge Some even Say But you look well Assessing why you’re in a wheelchair Or out with friends I want to say thank you How grateful I am While I have some clarity A few split seconds Being here, connecting Sharing Here, is part of my life #chronicillness#chronicpain#chronicpainawareness#myalgicencephalomyelitis#chronicfatigue#chronicfatiguesyndrome#mecfs#cfsme#fibromyalgia#autoimmune#longcovid#invisibleillness#millionsmissing#unrest#spoonie#disability#disabled#poem#poetry#words#writer#thoughts#gratitude#thankyou#wellbeing#chronicillnesscommunity#belonging by @millieand.m.e
27
3 years ago
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This is the grief That creeps up on you That can’t be consoled And boxed Wrapped in ribbon It’s not neat But it’s unseen Giving the appearance Of being dealt with This is grief Of not having a career Using my brain Working for a greater cause Reaching milestones ME is a cause That needs more minds So mine can be freed up It’s exhausting And feels like a waste of my life Researching Trialling Doing nothing Because That helps Resting It goes against the grain I’ve not witnessed greater pressures Than those of us With ME To get better Do more Do better And getting better With no cure And limited medical allies You’re on your own And while I have strived To live With meaning And beauty There’s a richness In the fibres of my being Deep appreciation For life Because I have lost So much time #myalgicencephalomyelitis by @millieand.m.e
11
3 years ago
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A morning of reflection and awareness. Perfectionist’s are not wired to rest yet this illness requires much of it ☀️ When I get That surge A vibration That runs through My veins A nudge in my gut That says Nows the time Try this Do this… I’m trying To conserve And sit in the moments Where my body is soothed At ease Here lies Relief and respite From an illness Constant Care and consideration Go gently Softness and strength Can co-exist 🍃 by @millieand.m.e
7
3 years ago
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🤍 by @millieand.m.e
12
3 years ago
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Committing To housebound Breaking The indecision Stepping back Falling into the couch To be caught By softness Surrendering To the loss of Freedom Mobility Ability Clarity Speech Pushing Through denial It has been weeks Months In the making You soldier on quietly Yet every step You kept taking Grew in pain And my darling you knew Deep down That a chapter One that was wide open Vibrant Had ended For now Hold that to your heart All that was What was possible After years of watching life Through your bedroom window by @millieand.m.e
20
3 years ago
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These months Have been heavy Pushing the fatigue Only for it to settle And smother Another part of my body A limb An organ Mostly my heart Guarded For loving and living Came at a cost I had plans And if you think after 11 years That pivoting Letting go Becomes easier It does But the aches Are more intense And bitterly felt Because you had promise Hope Yet you go about gracefully Disconneted Like the autumn leaves Swaying And sinking To the ground They cover your skin Eyelids You are as far inwards As you can Retreat Your safe haven Who welcomes you To rest and hush And when you emerge weeks Or months later The world is too much So you focus on Morning lattes Soaking in the sun Following birds Flying across your vision From the couch In and out of view This is how the days Go There is more An essence Or inner grit And softness That gets you through It’s what keeps your Pulse alive You feel only through What’s hot and cold The rest The tears Will come later My darling This is survival mode This is the agony and despair Behind closed doors The lens What people do not see What’s become your norm To pace Pull back Let pieces of yourself Go Evolve, grow Hold yourself Until Eventually you Know you will be Okay In time by @millieand.m.e
21
3 years ago
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She is there Under my skin In the corner of my eyelids Looking back at me In the mirror I haven’t got the energy To grieve I’m remembering how to get out of bed Put clothes on Eat Drink The basics I had forgotten so much Yet know too much For this moment Where all I needed to do Was rest Move away from screens and lists To quieten my mind Which was racing, Processing Trying to plan, predict and prevent The worst Had already happened My darling You did your best In a situation that was Not safe You did it with grace And grit Then there was The other part of me Not wanting to do All the things The effort and energy Discipline Showing up Every minute Despite Wanting the curl Into my chest Here you need compassion, Softness and flexibility The art of healing Invisibly I was thrown From a vibrant independent life To being housebound To a place of numbness A haze of grey Until birdsong made it’s way into My room I followed it bare foot Stepping across cool floorboards Into the morning sunlight Thank you, little one For guiding me back by @millieand.m.e
18
3 years ago
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My darling Let it be I know the frustration I do You know all the things That help Yet they can be too much For now Through getting back You have placed these weights on your shoulders Pressure That radiates and burns From you hips To your toes The steps you are taking To get back To where you where A Year Ago I know you’re not ready To admit This loss This change But you are already grieving When you look out the window When you resign to another day Of being bound to the couch Though you have moments With your matcha And dark chocolate Your heart is heavy So much sadness That when a tear forms You close your eyes Draw in a slow breath Swallow. And there is another part of you One in the shadows On altert Scars of her own Know that your are safe To let down your guard You have survived the darkest Days imaginable You will get through this Wrap your arms around your chest Curl into a ball Or stretch out With your palms facing the Sun, Moon Stars This is the flow Of chronic illness Entangled with life changes For the better Possibilites Formed like buds on blossom trees Waiting For spring 🌸 by @millieand.m.e
16
3 years ago
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it’s the numbing silence waiting to not only notice the glimmers the sun birds soaring above a newly blossomed flower or the autumn leaves beneath your feet sometimes you are not ready to stand in the sunshine the warmth jarring your world is grey slowly one step try not to force or push or think of how things should be how things were moment by moment I know my love this here is the hardest part the unspoken part of healing everything is too much you care deeply but not yet let it all pass there are 1 million thoughts choose nature choose to focus on your breath choose to focus on the first sip of tea choose your body feel it be just enough to come home to her this is your place look around the foundations you built you did this look out the window your blooms have been growing through grief and joy take your time there is no right way give yourself grace allow softness #bloom by @millieand.m.e
13
3 years ago
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Walking into 28☀️💛 For the first time excited for what’s ahead. To come. My plans. To celebrate not only my health improving but taking a moment as the waves lapped against the shore. Time. All the birthdays I was too unwell to dance for. Here’s to you love for all the unseen. The breaking. Pain. Grief so heavy your heart was dragged through your chest, gut, toes. Resting in the soil, but you continued. Growing. Wilting. A cycle of life and decay. You’re blooming now 🌻 taken in Port Elliot, South Australia by @millieand.m.e
14
3 years ago
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My darling Here we are For once You have taken Goodness Joy Opportunity Hope In your stride Change all at once For the better Deserved You’ve pivoted Paused Told yourself All this could disappear Fear has shadowed Your brightest Warmest moments The impossible Your heart Begging For no more Heartbreaks For this To last You’ve started dreaming again Letting little thoughts Enter You watch them from above In and out of focus As clouds pass by Choose But when? When is okay to plan Hold on We’ve been holding on For so long But for other reasons Life and death. Little dove You have soared and roamed Spread your wings Without ache And bed rest. No consequences For living. You know time Inside out It’s hands tick inside you Echoing Loss Rushing through your fingertips Grains of sand All that has been Could have been Mourn for all the above Grieve the hand you were dealt At 16 You aged overnight Cells shrivelled Some swelled Organs slowed Wrinkled A Timelapse Of a peach rotting. Yet your core Grew stronger Wiser You loved more deeply Cultivated compassion In drought Kindness, Forgiveness. For you Could not have done better. You kept laughter Shared with others. You find yourself lying Under the smooth sage leaves Olive branches Draped above Dappled sunlight A warm breeze Your breath slow Soft Eyelids gently resting Peace; It has finally found you Or you it. by @millieand.m.e
16
4 years ago
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