The hurting time…

Chronic illness becomes a way of life. You don’t stop feeling bad, but you do get used to it. Humans adapt. Pain becomes the new normal.

Most days spoonies deal with symptoms that would send healthy folk to the Dr. On bad days many would be considering 999. Chronic peeps, however, muddle through. Sometimes flare ups floor me. There are days when brushing my teeth is an epic feat. Others I function to varying degrees. I work & play & everything in between. Always, though, I hurt.

I pay the price if I over do it. I carefully plan routes & venues around how many steps will be required, if there is seating, stairs & so on. I pre check menus for items that won’t make me sick. Plan meals around when meds need to be taken. I do everything tired. It’s so hard to sleep & even when I do crash I wake feeling little difference.

Selfie of women’s sad face.

I found a way to work around my illness. Squeeze pleasure out of any socialising I can manage. I have become accustomed to cancelling things I really wanted to do. The list of things my body is no longer capable of grows. It’s ridiculous how sad felt upon realising I won’t jump on trampoline or turn a cartwheel again. Especially when I don’t even have much desire to do either. It’s just another limit. Another no.

I persevere. I follow Drs orders. I try all manner of suggested remedies. Acupuncture, cbd, floatation tanks, tens, yoga, the works. Some treatments help. There are medications that work wonders. Others that I need, but that cause problems. I take drugs to counteract the side effects of other drugs. It’s exhausting, but it’s my life.

Hand holding 5 pills of various shapes & colours

It is not all bad. I have privileges that many do not. My home is warm & safe. I have access to excellent care. I am gifted with skills & talents that allow me to pursue work I love. I have safety nets. I had years of being fit & well. I went to uni, got stuck into the partying & had the chance to travel a little. I’m loved. Pleasures great & small find me. My cat is the cutest. Life could be worse. I can handle this.

Cute black and white lying on back fluffy belly exposed

Except when I really, really can’t. There are days when chronic life overwhelms me. Days like today, when every inch of me is sore. Keeping a brave face when you’re throwing up for fifth time in as many hours is a challenge. Every day my first sensation is agony. Aching joints. Throbbing head. Burning skin. Churning stomach. Each little movement hurts. Remaining sedentary isn’t an option either. My arthritic parts seize up. Leading to, yup, more pain.

Food refuses to stay in my stomach. Don’t eat & the acid bubbles up my throat. Attempt to line my raw stomach and the vomiting makes everything worse. I can’t concentrate enough to distract myself. Sleep is illusive. There’s no escape.

Burdening others with my misery triggers my guilt. Keeping it all in is horribly lonely. Pain relief doesn’t work. Positive thinking is way out of reach. Some days are hard. It is too hard be grateful. Impossible to hang onto hope of easier times. Today I’m just thoroughly sick & tired of always being sick & tired.

Plus size women in green leopard print maxi dress  with walking stick

And a happy new year…

I think it’s fair to say that 2019 has been a shit show. A political nightmare on a global scale. Environmentally disastrous & frankly a genuinely worrying time to be alive. My faith in humanity has taken a battering this year.

It won’t be like this all the time stencilled onto a pavement

It hasn’t been an especially uplifting 12 months on the personal front either. There’s been loss, illness & a struggle for meaning. It has all felt a little pointless at various stages, but I made it. Here I am living & learning. Carrying on.

Woman in bed with teary eyes

The year got off to a heartbreaking start, but there have been ups. I cemented a crucial relationship & extricated myself from one, which in hindsight, I hadn’t wanted to be in for quite a while. My people have proven once again how marvellous they are. Circling around when needed & letting me be when required.

Txt conversation

There have been a few professional triumphs. I returned to public speaking (terrifying), embarked on a little social media consultation & posed for some excellent photographers. I produced writing I am proud of and my expanded audience significantly.

I applied myself to the task of enjoying life. It’s not always easy when dealing with chronic & mental illness; I’m pleased with my progress. My little ones continue to be of endless interest. I have immersed myself in the joy they bring as often as possible. I’ve allowed myself to enjoy time with someone lovely & undemanding. I even had some successful surgery.

Selection of pictures of children

Most importantly (I think), I have released myself from the need to know where I’m going. I always thought my biggest purpose was motherhood & letting go of that dream has been challenging. I felt bereft of meaning. It has taken time & wise counsel to discover that perhaps I don’t need all the answers right now. It’s ok to take some time to breathe & live. Hopefully other options will present themselves. In the meantime I can work on career goals and hopefully continue to squeeze maximum happiness out of life.

Path continued painted cement ground with foot & walking stick

So, it’s true. Life goes on. I suppose that’s as true on a larger scale as it is personally. We can still strive to be the change. Sadly, it looks like there will be lots of opportunities to test the courage of our convictions. I hope we prove ourselves brave.

Mirror image of fat women smiling

*

* Photography Credit – Megi Aben

Give the day a chance to start…

It’s been a fairly standard day. I got some writing finished, sorted a little admin & did a food shop. No exciting hijinks. Nothing horrible either. Why then do I find myself feeling so overwhelmingly sad?

An hour ago I was just getting on with the daily grind. I wasn’t jumping for joy, but I was fine. From one moment to the next my equilibrium vanished. For no discernible reason I am flooded with melancholy. It is one of most baffling aspects of my mental illness. It extends beyond feeling miserable. My inability to comprehend what is happening leaves me powerless to combat it.

Control is a big thing for me. I think, because there have been major parts of my life in which I lacked significant sway. That leaves me uneasy with the uncertain components of my mental health. It is very frightening to know that my mood may descend at any moment. It’s even more alarming when I don’t know why. I can’t tackle a problem when I cannot identify the cause.

Moon in cloudy sky

All that’s left is trying to ride out the low. With no clue as how long the trip may last, it is hard not to lose hope. It’s hard to compute how much of a hold these periods take on me. This isn’t deepest, darkest despair. It’s what I think of as everyday depression. More grey than black. A persistent ache rather than unbearable pain. Yet its unpredictability looms large.

So, how do I combat the urge to believe there isn’t any point fighting a battle when I know I’ll lose the war? This is good a starting point. I write about my crazy head in an effort to exert dominion over it. I try to talk about it or at least just label it out loud. Not having to pretend that everything is a ok can help. I remind myself that I can and have exited these dips. There is colour in my life waiting to reappear. Of course I take my meds and then I just hold tight.

Long term mental illness is a slog. It leaves you no option other than to dig in & get dirty. My heart goes out to anyone else who is stuck in the trenches.

Autumn leaves in street lamp

Harder than easy…

I understand the appeal of ‘fake it til you make it’. It is definitely a strategy i’ve employed, but I’m beginning to wonder if maybe there’s a dangerous crossover point. Does acting like you’re ok until you can actually be alright lose it’s usefulness when OK ceases to be a realistic goal?

At the moment I’m wavering between distraction at all costs and crying in the dark. I’m filling the days with as many fun or productive things as I can physically manage. I carry on with the wee ones; go rascalling to farms & libraries & soft play. Have lunches & chats & belly laughs with people I love. They temporarily pull my edges together. I’ve been busying myself with tidying the spare room. Organising my wardrobe. Hanging art that’s been waiting in boxes for months. I keep going until my body screams. When I stop I realise the calendar is still set to my due date & there is just no way I can open the curtains today.

Calendar on pile of books

Some days I can almost fool myself that I’m doing ok. I can keep from asking what’s the point. Push the existential thoughts aside & paint on a smile. It never lasts long. I’m still hollow. I don’t know when the forced productivity becomes a lie. Left to my own devices I am pretty sure I would lock the door & perpetually reopen my wounds. Is this manufactured well being what people mean when they say ‘just keep swimming’? I have to be honest I feel like eventually I’ll probably drown.

Person submerged in blue bath water

I’m holding onto the possibility that it might get better. Time heals and so on. I’m not sure I believe that, though. I think most of the time you probably just get used to pain. Intellectually I can work our what’s happening. I’m grieving. Not just the baby I lost, but the idea of any baby. I’m grieving the entire life I wanted. All the babies I never got to hold and all the theoretical ones that might have made that easier bear. I no longer have hope. That’s what is making it so hard.

I’m worried that this is it. My life will always be waiting for the next life raft. Clinging to a few hours of something good before I wade back into nothing. Emotion aside I don’t even have the energy to keep up this level of diversion. The recovery to doing ratio is creeping up. It is getting harder to put on make up & push my arse out the door. I fear my real mood is leaking out.

How long can I keep this up? Congratulating myself on finally emptying the washing basket feels like a shallow victory when I can’t write anything that doesn’t make me weep. I really don’t know if I’m nailing the life goes on thing or just closing my eyes to reality. There are still pre natal vitamins in a cupboard I no longer open and a box of positive pregnancy tests under my bed. The perfume I wore when my own made me nauseous remains on my dresser. I can’t sleep. I’m struggling to imagine a future that feels fulfilling. I can’t help thinking that avoiding these truths won’t change them.

Moonlit sky

I can logic this out, but that doesn’t change the problem. I can’t afford to get crazy again. I also cannot stop wondering if this is all there is. This keep on keeping on farce is wearing me out, but I don’t see a functional alternative.

Along with the sunshine…

Years ago I had a genius idea. I thought it would be lovely if we could have a real life version of those romantic montages you get in films. You know the bit in a romcom where someone thinks back over their relationship and we see all the best bits. Now imagine being able to replay the special moments of your own life. That would be lovely right?

Not just the romantic high spots. A full on motion picture, this if your life best bits to play whenever you need a boost. It’s been a tough year so far. So allow me to wander through the memories that feel dreamy. I give you a snippet of my highlight reel.

This one probably doesn’t seem that special, but it still gives me butterflies every single time I summon it. I was just meeting someone for lunch. He was waiting on the steps of a gallery looking stern. As he saw me approaching his expression relaxed. When I reached him he kissed me in a way I hadn’t experienced before or since. I’ll never be able to explain what made that kiss different from all the others, but it made me feel completely wanted. Safe & desired & understood. Then he half turned, caught my eye over his shoulder and took my hand. I melted. It wasn’t a special day. We didn’t do anything extraordinary. There were no meaningful declarations. We definitely didn’t live happily ever after. Yet it is without a doubt the best kiss of my life. It’s funny the things that leave a mark.

I’ve been been consuming a romanticised version of New York City my whole life. It appears in my favourite books, music, art & films. It’s famous streets were home to idols real & fictional. From my early teens I was desperate to get there. I knew it would be incredible, but I was always a little afraid that the real thing couldn’t live up to the fantasy. NYC is turns out, is one of those rare things in life that never lets you down. It is every bit is as magnificent as I had hoped it would be. Everything looks exactly as you thought it would, but still seems unreal. It is a wonderful surprise to find that the place you’ve been dreaming about actually exists. The Empire State makes you believe Cary Grant might sweep you off your feet. The Dakota looks exactly as John left it. 5th Avenue is just like all those advertising posters from the 40’s. Every corner turned reveals a spot where that other Carrie might have swooned over Big. The skyline is as impressive as you imagined and the lights of the city twinkling from the park will take your breath away. More than that, it feels just like I hoped it would. It’s buzzing with creativity & promise & resilience. Wandering alone in Manhattan made me feel exactly as I had anticipated that it might. That swelling of excitement in my core was magical.

ly h Kerr NYC

During my fourth pregnancy I was offered an early scan. A chance to check everything was going to plan. I was terrified and excited. I can’t remember much of what was said. It’s all just a fear stricken blur until the glorious sound of my unborn child’s heartbeat made everything clear. That steady, seemingly irrepressible beat filled a gaping hole that I had worried was bottomless. Hope, it seems, can breach any gap. I’ll never forget that feeling. Whatever came after, I’ll have those precious minutes & that wonderful sound.

When my niece was a toddler my brother & sister in law took her to visit family in South Africa & Zimbabwe. They were gone for nearly a month and I missed her so much. I couldn’t wait to see her on their return. It turned out the feeling was mutual. When she saw me she screamed. She guided me to sit in the floor and climbed into my lap. The way her little face beamed at me is the closet thing to pure happiness that I’ve ever witnessed. Knowing that this precious little person could love me like that is one of the greatest feeling imaginable.

Muffin

On a girl’s holiday in kavos a huge group of us went out for Mexican food. As happens in places like kavos they gave everyone a free shot of tequila. Of the 14 girls assembled only my bff & I liked tequila. So, with a combination of confidence & stupidity that 21 year olds possess, we drank the lot. With 7 tequila shots in each of our bellies we embarked upon a night of awesomeness. The drinks continued to flow, we danced on bars and beaches. We sang at the top of our lungs. We lost the rest of the gang & met a variety of interesting strangers including a guy we named jiminy cricket (we never worked out why). Pam fell asleep on a giant pounding speaker and I mistook a goat for a dog. Finally we witnessed the sun coming up over the booze soaked island as we stumbled our way home. It was the ridiculously messy kind of night you only have when you’re young & far away from home. It was highly irresponsible and probably pretty dangerous, but I wouldn’t change a second if it. I’ll always be glad I had those party days. I’ll always be grateful I had the best friend possible to share them with.

Pam & I

My Gran died young. She had cancer that recurred & spread. I was too young to understand the ins and outs at the time. In fact, I didn’t even know she was ill until close to end. I was the first granddaughter and she basically spoilt me rotten. She called me The Queen. She took me everywhere with her & made it her business to satisfy my whims. From my eagerness to ride horses to my heartfelt opposition to Mum’s chewing gum ban; Gran fixed it. What I’m saying is there are countless highlight worthy times to pick from. The one I always come back to is an uneventful Saturday. We were at Gran’s house & she was debuting what she described as her new look. She had started putting her hair in a tiny ponytail & wearing track suits. In my head it’s pale blue and pretty smart for a track suit, but my memory may be wrong. In any case it was a departure from her usual put together style. She was making jokes and asking how I liked the new image. I didn’t know at the time, but in hindsight it was a change prompted my necessity not fashion. She was getting sicker. She needed more ease and comfort. She must have been in pain. She had to have been scared. I never knew. I do know now how hard it is to be sore & sick all the time. I’m not facing what she did. I’m not dying. She never wavered. She took her narrowing horizons and made it something fun for the grandkids. When I think of her in that sweatsuit she’s laughing & living. That feels like real love.

When I went to Brisbane I was just getting into body positivity. The idea that my body wasn’t wrong was very new. Finding myself in a tropical climate with most days reaching at least 35 Celsius shunted my body acceptance journey into a faster gear. The heat was too intense to cover all the bits I thought needed to be hidden. I was compelled to wear things that would normally have scared me. Guess what happened? Absolutely nothing. I explored the city with my flabby arms & thunder thighs on show and no one cared. After a few days I stopped thinking about if I could wear certain things & just put things on my body. I began to notice that I actually liked how I looked in these items that I’d never usually have dared to wear. I felt comfortable. The day we went to an animal sanctuary was crazy hot. I wore a tiny little flippy blue vest dress. As I wandered amongst kangaroos I realised that I felt completely at ease. The animals were beautiful, the sun felt good on my skin. I was happy & free. It was one of those perfect days when I not only felt amazing in the moment, but I knew I was experiencing a breakthrough. If I could bottle up that feeling, I’d put weight watchers out of business.

Brisbane sunset

I was lucky enough to have a fairly delightful childhood. There were a lot of happy times. One of my stand out memories is the time I spent with my siblings after dinner & before dessert. My parents would send us into living room to let our tummies settle. Looking back I suspect they just wanted 15mins of quiet adult conversation. In any case, no settling of any kind went on. We took advantage of that unsupervised period to behave like mini maniacs. We played a variety of very rough & tumble games of our own devising. To be honest I’m surprised that both the room & all four children survived gems like ‘crocodiles’ & ‘pile on’. We did & those times were golden. This was before the boys got too cool to want to actually play with their little sisters. Back when my baby sister was still an adorably chubby cheeked little monster. It was long before any of us had any worries beyond how good pudding would be. We were securely encased in the family unit. We always had someone to talk to, someone to carry on with & someone to tease. We never doubted that our parents could handle any difficulty we encountered. Life was good.

Young Kerrs

It occurs to me that some of my happiest life snap shots are bittersweet. I’m not sure if it’s that just the way of life or a testament to what happens when the universe beats you up a bit. Either way, I’m glad I’ve mastered the art of counting my blessings. I suppose sometimes the cliches are true; you can’t have the rainbow without the rain.

Month by month…

There is a particular torture in waiting for your period to arrive when you wish it wouldn’t. Analysing every sensation in the run up to your due date. Trying to decide if your sore back is a period sore back. Being almost certain you kind of smell a menstrual type aroma, but also thinking maybe last week’s nausea was morning sickness. Counting the days. Marking the calendar. Trying not to hope & trying not to lose hope.

Each month is just a microcosm of life. Watching, waiting & knowing time isn’t on your side. Doing your very best not let this desire take over. Working hard to ensure not realising the dream won’t break you. Constantly weighing up how much more you can take.

I’m lying here kidding myself that the hot ache in my thighs doesn’t mean the blood is on its way. I’m reminding myself of all the wonderful things I have. Attempting to hang onto how grateful I am. I know how much worse life can be. You can be happy with the consolation prize. Almost is better than nothing. We don’t always get everything we want, right?

I am ready now to fall…

Dear Baby,

I still write baby even though you’d be almost grown now. You’d be pretty much a man, which is very scary. I bet you’d be amazing, though. I picture you as tall & sensitive & just a tiny bit reckless. I know we’d have butted heads, but I’d love your fire. 

 I’m feeling pretty raw this year. You have another sibling who didn’t make it to life. I have another reason to cry. I have reasons to smile too. I’m doing ok. 

I’d be better if I was buying cake & wrapping presents, but life had other plans for us. I had to learn to be strong & you were destined for somewhere more beautiful than this world. 

I’m ready now. Love, loss, life, I can take it all in my stride. I am ready to to mother a child I can hold in my arms as well as my heart. I have wonderful new little people to cherish, I have hope & I will always carry you with me. That’s enough for now.

Love always,

Mum.

Xxx

Try to comprehend that which you’ll never comprehend…

In the midst of a wonderful weekend at the Edinburgh Fringe I had two really inspiring experiences. Both of which fuelled in me a desire to share some writing that hasn’t seen the light in quite some time. On Sunday I saw Neil Holborn perform his stunning poetry. He is very open about his struggles with mental illness & includes his own experiences in much of his work. The power of his honesty & the emotional response he received to some of his pieces really struck me. He reminded me of the power of sharing the dark reality of mental illness. Later that day I was introduced to a friend of my boyfriend who also talked openly about his past mental health struggles. This led to a discussion of how helpful it is to talk about these issues; how more often than not other people will then share their own experiences of mental illness. We talked a little about how that realisation that mental illness is actually really common relieved so much shame. It reminded me how important it is to talk frankly about my experiences, so that those in the depths of illness can see that they are not alone. Equally important is to reach those who have never been touched by mental health problems. Letting people see that this can happen to anyone, that the pain is intense, debilitating & uncontrollable lifts stigma. I really believe that the way to fight ignorance is information. Not just statistics, but brutal insights into conditions often misunderstood. It is so much harder to dismiss mental illness when you have been confronted with it’s reality. 

With this in mind I decided to review work I produced in my darker days. For those unaware I have battled with PTSD, depression & self harm for most of my adult life. Although my mental health is much improved from the time of this piece, it remains a daily struggle. One is never cured. The best I can do is learn to live with what I cannot change & fight for what makes my life beautiful. I am profoundly grateful to no longer be actively self harming. I am also aware that urges still exist. It takes work to maintain my current life. I make a daily decision to keep fighting & I am far from alone. 

I know these words may be disturbing to some, but I ask you to read them anyway. I share this because I passionately believe that a deeper understanding defeats stigma & grows compassion. 

i had another little crisis

despite a transfusion in late december,

my haemoglobin had again dropped to 6.6

causing doctor’s to get jumpy

&

prompting talk of another transfusion.

this fuelled  a panic in me

i do not like having blood transfusions

i feel incredible guilt.

other people are more deserving of this blood

someone selflessly gave of themselves.

i will waste it

i know it will feel horrendous inside me

i do not want it.

i don’t really have the option of

saying

no

they will call in a psych consult

which could lead down a road

i can’t

even

think about

my first stupid reaction

is

i must cut

whilst the dr’s decide

i will blood let

i know it doesn’t make sense

to most

but

there is method in the madness

my hb is already low

i may as well be hung for sheep as a lamb

i will hate myself less for shedding my own blood

if i lose enough blood

do enough damage

i may feel sated for a while

with this in mind i set to work

after two disappointing nights

of

slicing

&

producing inadequate wounds

i got angry.

on the third day,

the gp called to say they had decided to go with an iron infusion the following week.

i considered myself free

to

paint the town RED

i felt it couldn’t be that bad

if i didn’t need a transfusion

i had still better fit in as much damage

before treatment

&

truthfully

after two pitiful nights

i needed it

so,

feeling enraged with myself

i set to work

i chose a spot on my slightly less scarred right forearm

i cut vertically

downwards

towards my wrist

everytime i reached a depth i could live with

i elongated the cut

&

started to work down into it again

i got into the most dangerous mindset

where

i just can’t resist

a little

bit

more

i ploughed through the layers of my flesh

fascinated

with what lay beneath

i watched three distinct fountains of blood

flow into one

sticky

hot

pool

i pulled the wound apart to make the blood spurt higher

i sawed through

some

tough,unknown inner material

and

thrilled

as the spray soared out

and hit my face

when i was finished

i watched

for

i don’t know how long

long enough to become dazed

i had created a gaping trench

the entire length of my foream

that continuosly filled with blood

and

spilled over, flooding the floor.

i could not stop the blood

nor, could i think straight

i wrapped a towel around my arm

put a huge jumper on top

and

took the bus.

yes,

the bus

to a&e

i trailed blood into reception

& collapsed in the triage room

i was so ashamed

dreaded trying to explain myself

lay in a cubicle

crying

i had done this many times before

but somehow

i couldn’t control my fear or self loathing.

i received 21 stitches

a transfusion

and

was hospitlised again for three days the following week with chest pains & breathing difficulty 

requiring

another

two units

&

suffering from severe pain

i spent those 3 days in & out of a morphine

induced altered reality

Junior dr’s were too scared to take blood from my arms

apparently experience is required

to find a vein in this network of scar tissue

the consultant was overly kind

fellow patients

stared & whispered

i lay there in

shame

pain

fear

all of which added up to

another attempt

to stop.

11 days

and counting……

20/03/2012

Blood on a mirror