Monday 30 June 2014

Mid-Life/Illness Crisis

(Ooo forbidden wine tastes all the sweeter.)

*Warning: This post may have been written after a glass of forbidden wine and a shitty day. May be a tad ranty and hysterical. But hey, it's like that some days.

In my last post I mentioned that I was in Over It mode. And I really am. I am over seeing doctors. I am over getting needles stuck in my arms. I am over taking a bucket load of pills each day. I am over not being able to walk out to my mail box. I am over talking about illness. I am over being ill and everything that goes with it.

I hear the cry now.

But Michelle you can't give up. You must have hope.

And this post isn't about hope, or that I've lost hope, or that people continually telling me not to lose hope has transformed the word hope into a four letter word (actually that last one is true. People stop with the hope talk. It assumes that I have lost something when you haven't bothered to ask if I have. And I haven't. Saying it sucks doesn't instantly equal loss of hope. And frankly the more you shove that four letter word in my face the more my stubborn self will tell you where to stick it.) This blog is about the fact that I have reached my 7 (okay 8) Year Itch and am having a mid-illness crisis.

I have played the game. I have followed the rules and towed the company line. I have drunk the Kool-Aid and been a good sickie.

And I'm over it.

When Anastasia sang:

'Cause I'm sick and tired
Of always being sick and tired

I was shouting “I hear you sista! You tell 'em.”

I am sick of being sick.

I am over it and need to pretend for a while. For sanity's sake. I am going to buy my sports car and get a hot young thing called a life. I am going to party like it's 1999, because I was rather well in 1999 (well apart from the whole hysterectomy thing, but hey lets ignore that part and go with the theme I'm creating here, okay? Okay).

I am going to smell some roses. I'm going to ignore some of the appointments I'm supposed to be making. I'm going to push myself in my wheelchair with my arms of patheticness even though I will end up face-planting on this keyboard as a result. I'm going to sip a glass of wine (one may have been sipped whilst I was writing this). I'm going to eat what I'm not supposed to eat. I am going to wear high heels and stand up in the sun.

I am just beyond illness. I am beyond the foulness and the ickiness and the sadness and the life is fricken unfairness. I don't care if it's delusional. I don't care if it makes me a bad sickie. I don't care if my doctors will look at me and go,“well she's noncompliant. Bad patient, bad.”

I am going to get my hair plugs and put on some fake tan. And say a big “Fuck it!”

Everyone else gets a Rostered Day Off or some Long Service Leave. I think I've put in my hours. Done loads of overtime and a heap of pro bono.

I want to do my version of Eat, Pray, Love. Even if it's more stuff myself with chocolate to say suck it to my migraine and fibre rich foods to give gastroparesis the middle finger, worship at the altar of HBO and My Cat is a Dick, and love the softness of my arse-print on the chaise portion of our lounge.

I'm Over it, people. Over it, I say.

Intermission time. Just like back when movies had intermission. I'm going to head up to the snack bar and grab a Choc top and some Maltesers. Maybe some more popcorn with a tonne of butter and salt and a bag of Jaffas. I'm going to roll them down the isles and put my feet up on the back of the chairs.

Suck it, Dysautonomia. Suck it.

I'm taking back life. It's mine I tell you. Not yours. For once I'm sending you the rough end of the pineapple. Bend over and brace.

Because this time I'm living and ignoring and pretending.

And being a bad patient. Bad sickie. Bad advocate.

Screw inspiration. Screw fighting the good fight.

Now I am living, badly, stupidly and totally inappropriately.

Because I can. And because sometimes a dose of stupidly defiant, cut your nose off to spite your face, is just what the doctor ordered.


Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

Wednesday 25 June 2014

Enjoying the moments when they come: Ella Hooper "The Red Shoes"

(My Dorothy's waiting for me as I went into my last brain and spine MRI.
Photo via Melt Images)

To say the last few months have sucked healthwise may be an understatement. I'm in Over It mode at the moment. I have a stack of referrals to organise and bloods to get done. But instead the paperwork is sitting under a pile of worn-once-but-not-so-pongy-that-they-can't-be-worn-again clothes, a heat pack, and brain-shaped squeezy ball. Get another needle stuck in my vein or binge watch Season 3 of The Walking Dead? It's not a hard decision. Add in that I am on day nine of a headache that has really only differed in intensity from clutching my head and sobbing and sitting on the couch breathing through the pain, and well it's been a funfest of epic proportions. So when friend and fellow patient, Belinda, sent me a tweet mentioning red shoes and Australian musician Ella Hooper I was a tad intrigued.

Regular readers know my love of red shoes. I made my own pair to say "Screw You!" to illness. They are on my header and business card. I indulge my fetish for red shoes at every opportunity, though sadly my quest for red boots continues. And I am wearing my Dorothy's to every medical appointment for a year to raise awareness and funds for Dysautonomia here in Australia. Friend and fellow patient, Kate, even made me a red superhero cape complete with a sparkly Dorothy shoe on the back. I may have a bit of a red shoe problem. But it's a good problem, as problems go. So no intervention required.

I have followed Ella Hooper since the mid 90's when I first sat in my car listening to her and her brother Jesse's band, Killing Heidi, on Triple J Unearthed. Hailing from the small Victorian town, Violet Town, it was easy to relate to Ella, as a fellow Victorian, rock loving, country girl. Killing Heidi's, Reflector took off, and both Weir and Mascara became regular features on Australian radio, and our loungeroom. Weir may have ended up as one of those songs where my boys were known to plead, "Really? Not again, Mum." But hey, as a Mum, you get to tell your kids to suck it up until they reach the age where they finally realise that your music choices are actually quite fabulous. (Many music battles have been fought over the years. The battle over Jeff Buckley's version of Hallelujah was particularly hard fought. Whether I crushed their child brains into submission by repeated exposure, or they simply became old enough to realise the magnificence of the song, I don't know. But I do feel it is a sign of parenting done right.) Having watched Ella more recently on Spicks and Specks, and various Rockwiz episodes (love this duet with Dan Sultan), I also suspect she'd be a great chick with which to have a glass of something fermented, or a coffee. And that my friends, is an important factor in music selection.

But I digress. 

Ella put out a call to her fans to send in pictures of their red shoes to be added to the lyric video for her new single aptly titled, *The Red Shoes. Being a top chick and fellow lover of the red shoe, Belinda kindly pointed this out, and I of course sent in a picture of my Dorothy's. And lo and behold, there they are in Ella's video!

The song is cracking and if I could dance without falling over and face-planting amongst my rapidly reproducing dust bunnies, I would. Red shoes aside, she had me at the first burst of guitars and I was sold after the first couple of lines.

I woke up with courage
What else is there to do?
My love don't worry.
I'll put on my red shoes

Perfection on so many levels.

After much in the way of shitty health and general ennui of late, it's one of those little moments in life that make you sit up and smile. It's kismet, baby.

Mr Grumpy had agreed that we could drive to Melbourne to see her perform for the single launch but unfortunately the venue is down a set of stairs in a basement. And as much as I am keen for adventure, zooming down a set of stairs in a wheelchair, whilst fodder for Funniest Home Videos, may not be the best option. After much lamenting of my bodgy weak legs and declaring a pox on both their houses, Mr Grumpy has mentioned that he'd be happy to piggy back me down the stairs so I can go. So there may be hope yet. Will keep you updated.

But in the meantime enjoy the explosion of red shoe magic and cracking tune. Turn it up, dance, and remember to embrace those moments when they come.

Michelle :)

*The Red Shoes is the third single from Ella's upcoming debut solo album Tongues.

Ooo look mine and my red shoe sista, Belinda's shoes. 
And a subliminal flash of Dysautonomia.Woo Hoo!
It really is the little things.

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

Thursday 19 June 2014

IV therapy. On Demand. But only if you're hung over, a celebrity or wealthy.

Some days you see a news story and it is hard to not end up angry. A while ago on my local news there was a story about The Remedy Room. This spa in New Orleans is offering IV treatments for the hung over, or those who just want a boost. This isn't the first time I've heard of one of these clinics in the US. I've also heard of them in other countries as well. Individuals can walk in and be hooked up for a reasonable price of US$149. You can top up with pain relievers and a variety of vitamin concoctions.

In one centre in the US if you come in with a hangover you can have IV Zofran (Ondansteron) an antinausea drug, added to your drip. Others offer a travelling service that will come to you. Whilst another sits in a bus outside nightclubs in Las Vegas.

Every time I see one of these stories my blood boils.

Why am I angry? As a patient with Dysautonomia I, and many of my fellow patients, have to beg to be given a litre of saline, despite dehydration and hypovolemia. Despite it known to be an effective treatment. We are told it's dangerous. That your body can become reliant on saline infusions. That our veins will give out. Presentation at an emergency room following a collapse is not a guarantee of IV saline and many patients can attest to being sent home as dehydrated and symptomatic as when they were wheeled in through the automatic front door.

It took 3mths of frustration and searching, for my GP to find a clinic for me to obtain regular IV Saline infusions, despite a medical need. Many patients simply give up on sourcing saline as they simply don't have the energy to fight the system. Ondesrerone is incredibly expensive here in Australia, especially if you have to take it multiple times a day. Yet have a hangover and it's popped right in. In the US there is an IV saline shortage. As pointed out by Was This In the Plan? there is also a shortage of the ingredients that are used to make life sustaining TPN and yet this too can be purchased.

But in these spas, and many others, you can walk in and be hooked up, if you have the funds.

It is not only the US. The UK and Australia also have IV spas. A quick check on Google brings up multiple spas or wellness centres in Australia where you can organise vitamin infused IV therapy.

If you're after "Energising vitality" they can help you out. If you have cold or are simply stressed, others are happy to help. Others speak about a range of health issues from migraine to immune deficiencies, but again price is a factor placing them out of range for many consumers. These products are seen as a saleable commodity, on top of any therapeutic use. With single infusions up for offer for a casual few hundred dollars.

And yesterday this photo came up in my timeline.

Ryan Phillipe and Paulina Slagter lounging around having a casual IV treatment. To say that I am an angry may be an understatement. They are the picture of self-indulgent wank. A culture that mocks and trivialise those who need such treatments, but are unable to access them either through a lack of funds, lack of physical resources (the shortages described above), or medical opposition.

The repugnant Hangover Heaven bus even sells merchandise to commemorate your experience.

IV therapy isn't the latest trend of celebrities. For so many it is a necessary, and life sustaining therapy. Having been in the position of having to nearly beg for a bag of saline in a hospital emergency room, despite severe dehydration, I can not feel anything but anger. My need is not because of a night spent partying, or because I need a cool pick me up, but because my body refuses to hold oral fluids even with pharmacological help. Because I become so dehydrated I can't stand. I can't speak. I can't lift my hand or function.

People like Mr Phillipe and these spas, trivialise what many patients around the world are going through simply to function at a basic level. They trivialise the struggle to access care. And they show once more that money is the key to healthcare.

They minimise the risks that are associated with these procedures such as infiltration, collapsing veins, infection and vitamin toxicity.

They minimise and make mockery of the many patients who cannot access care.

They minimise and make mockery of the many patients who would love to never see another IV needle again.

They also take financial advantage of patients who in desperation turn to these services for help.

The further commodification of medical therapies thanks to celebrities and spas promoting these therapies as fashionable or trending, mean that they will be placed even further out of the reach of the patients that require them to function or sustain life. And that is unacceptable.


Please head on over to Was This in the Plan? and read:
They choose vanity. We choose life.

Tuesday 17 June 2014


(Picasso, Woman at the Mirror, 1932, oil on canvas, Museum of Modern Art, NY) 

Purveyor of sandwiches.
And bandager of knees.

She is the girl who wears green jumpers.
She is the girl with red shoes.
The girl who writes.
The girl who eats brown sugar straight from the jar.

The sick girl.
The quiet girl.
The good girl.

She is the construct of the perceptions of others.

She is all of these things.
She is none of these things.

She pulls the flesh from her body.
Slowly at first.
Then faster and faster.
Until all that remains is an amorphous pile of flesh and bones.

She surveys the pile.
She pokes and pushes.
Lifts and twirls.
Each fragment inspected in detail.
A lengthy process of selection and exclusion.

Understanding is reached.
A decision is made.
Excitement builds.

She begins building herself anew.
Piece by piece.
She selects what she wants.
What has meaning.
What feels true.
The pieces that are her.

Slowly the pieces coalesce.
They shudder and strain.
They intertwine and weave.
A portrait of herself of her choosing.

Others see the new her and shy away.
This is not the girl they saw.
The girl they knew.
The girl they were comfortable with.
This is something new.
The new her jars.
The new her challenges.
The new her blinds those who cannot see.

She walks tall.
She dances as she moves.
Her body fluid and right.
She has found her at last.
Her voice is present in every movement.
In every action.
In every word.
In the angle of her head.
And the song in each breath.

She stores the other pieces.
She reworks some.
She sees potential in others.
She stores them for later use.
For future changes and new possibilities.

She was always there.
Under the layers forced upon her by others.
But now she can finally feel and see and hear and know the lightness of her essence.

The lightness of being.
The lightness of reclamation.
The lightness of her.


I found this bit of writing in an old notebook. I used to write whilst I sat in the car waiting for my boys to finish various after school activities. I have a collection of pieces of paper and notebooks with all my scrawled half-formed ideas. 

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

Friday 13 June 2014

This week I rocked because.... Episode 9

(I picked up the rock on the right from some land we looked at when we first moved. 
It had rained and the wet surface of the rock shone a deep red, so naturally I had to pocket it.)

There have been highlights and lowlights the last two weeks. Post-event malaise, aka kitchen face-planting, does tend to take the shine off life. But once the self-pity and drool is wiped away I can reflect on some of the good times that have peppered that same time.

I have had some highlights where I pulled a rock star performance from my nether regions to shine for an hour or three.

This week I rocked because....
  • I had my first piece of writing (the same one I performed at the Emerging Writers Festival) put up on the Writers Victoria website. That it was also entitled FUBAR just makes it all the more special. As they say, start as you mean to go on.
  • I managed to frock up, Dorothy shoes on, for my neurology appointment this week. Despite the mehness of the appointment, I had sushi and saw a guy full steampunk, long black leather jacket, top hat and aviator goggles, at the hospital. If that doesn't bring a smile to your face nothing will.
  • I managed to brave the teenage boy funk of the youngest's bedroom and wash his sheets and remake his bed. 
  • I squirted cleaner at the mold in the shower. It may not have worked but I still squirted.
  • I have been able to keep up with my #lookingup sundown photos each day despite decreptitude. May have resorted to taking one out my toilet window. But at least I took it!

So tell me, how have you rocked this week?
  • Feel free to share with anyone else who you think may benefit from recognising and celebrating, just how much they've rocked this past week.
Michelle :)

And a little chipper Van Morrison to start the day.

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

Wednesday 11 June 2014

It was only cordial.

As I lay with my cheek against the cold tiles in my kitchen, it dawned on me that perhaps it was time to clean the kick boards. You never really notice these things until you are eye-to-eye with the miscellaneous splatter. You also never notice those little sticky patches that pepper the floor. Invisible to the naked eye, but very tangible to my cheek as I peel it from the pale tile. If there was any doubt about my tactile senses, the accompanying sticky crackle as my skin slowly separates from the floor, confirms the presence of a little spot of ick. I convince myself that it's an errant drop of cordial rather than a spot of bin juice from a leaky garbage bag. 

Please be cordial.

Slowly I manoeuvre myself into what my yoga teacher always called the child's pose. Edging my way little by little, as every movement brings a threatening wave of darkness. Every millimeter a deafening roar in my ears and a greying of vision. I swallow down the vomit that threatens and continue my cautious choreography. All the while repeating my mantra. 

It was only cordial. It was only cordial.

Bent in half. Forehead on tiles. Arms folded back at my sides. Bum elegantly stuck up in the air. It is only now that I realise that somewhere between sliding down the kitchen cabinets and waking with my cheek superglued to the floor, I have wrenched my neck and shoulder. Focus on the pain not on all the potential sources of kitchen stickiness.

It's only cordial anyway.

I take a deep breath and examine my inverted world. Time to vacuum, that's for sure. And mop. Oh how it needs a mop. Between the inadvertent remnants of cooking and a Great Dane who seems intent on shedding her body weight in hair each week thanks to our fickle weather, the floor is in desperate need of a scrub. As I lie there trying not to breathe in a canine furball, I am once more hit by my desire for a H2O Steam Mop. Because that's what comes to mind when you are trying to avoid thinking about the fact that you have just passed out in the kitchen. Too much morning TV. Those annoying infommercials do their work, despite the irritating pathological excitement of the presenters.

Did you know it'll dissolve the crayon off your vinyl tiles? It'd make short work of that patch of cordial.

Slowly I unwind. A desire to be far away from sticky tiles and dog detritus is a potent incentive to movement. Not that my body wants to comply. It seems to have blinkers on when it comes to domestic hygiene and would happily remain horizontal no matter how repulsive the state of the surface it lies upon. Not that my neck and shoulder don't offer up their own protest. Pursed lips and gritted teeth are all I have left to argue my determination to return to the vertical.

Far away from that patch of cordial. It was most definitely cordial.

Head hanging down I grab the front of the cupboards and will myself up. I walk my way upwards. The rest of the word retreats to the periphery as my focus narrows to the necessities of each movement. The slow release and placement of each hand all that matters. The texture of the laminate under my fingers anchors. Finally I am standing. Legs wide apart. Feet planted firmly. Taking root in the tiles. Head still hanging. I sway before the cabinets breathing slowly, as another wave of fainting threatens.

But at least I am away from that pesky patch of cordial.

I wipe my cheek and feel my fingers stick. Sometimes all you can do is take a deep breath and stumble to the sink to wash away what you have now convinced yourself could only possibly be cordial. Of course it's cordial. It could only be cordial. That's all. Phew. Dodged a bullet there.

Please don't be bin juice.


NB I had to remove the option for Anonymous comments as I was being overwhelmed with spam despite my best efforts.  

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

It's been a long day so I need a bit of a pick me up song.

Sunday 8 June 2014

Six months in Chronic Illness

(Sick person going to Lourdes, France to take in the water, source)

3 x GP appointment
2 x Neurologist appointment
1 x Cardiologist appointment
4 x Emergency Department visits
1 x Ambulance call
5 x Blood tests
1 x MRI Brain and Spine
1 x Ultrasound Abdominal
1 x Ultrasound Pelvic
1 x Evoked Potentials bilateral leg
1 x Electromyogram bilateral leg
1 x Nerve Conduction Study bilateral leg
1 x Wheelchair and mobility aids visit 

It's only when I start thinking about the last six months that I begin to realise just how much of that time has been spent in the medical system. It's not even a complete list, only what I can recall off the top of my head as I sit out in my backyard enjoying a few moments of Winter sun. And doesn't mention all the sundry medical interactions. For example all the pharmacy visits for my medications, which are too many to recall accurately. The stack of medication scripts that are stuffed in my big box of pills are a good indicator. The list of new scripts I will have to get from my neurologist on Tuesday an even better reminder. Every week when I fill my pill box there's always one or more meds that I have run out of that must be fetched from my local chemist.

If I had followed up all recommendations from my doctors, the list would be longer. But medical fatigue means that I have let things slide. There is only so much you can take. You have to have life outside of medicine and illness. And each interaction takes it's toll. I should have followed up on physiotherapy. I do need to follow up on my appointment for the autonomic gastroenterologist. But some days I am simply over it. Not necessarily the brightest of moves, but every now and then you have to simply forget it all and sit outside in the garden and smell the roses.

If I included all the times I probably should have gone to the GP or to the Emergency Department it would be longer. But you get used to riding out symptoms. You get used to minimising the day-to-day pain, fatigue and illness. You get used to living in a permanent state of  '000'. And, as the doctor at the ER doctor pointed out the other week, they are happy to help me when I am in acute pain or crisis, but there is nothing more than can do for me in my country town. They can slap on a bandaid, but the wound remains unaltered.

If I included the threats of admission that I have talked my way out of, it would be longer again.

No the pain's much better. 

I'll be fine at home.

Oooo look, I can speak now.

I could get an Oscar for my performance.

If I included the weeks of recovery required from each trip to the city. When I couldn't lift my head off the pillow. When I couldn't keep food down or stand up. Simply because I had to go to see a specialist or have a particular test, which can only be done in the city 3hrs away thanks to my complexity and rareness. Then the list would be longer.

Life is set out as follows:

Prepare for trip to hospital/medical clinic/specialist/test
Make it through appointment/travel to and from/emotional rollercoaster of bad news-no news 
Recover from trip to hospital/medical clinic/specialist/test

Prepare for next trip to doctor/medical clinic/specialist/test infinitum

The reality is that most of this isn't known outside of our immediate family. The reality is my life and other lives like it, are hidden from the wider world. Forgotten or simply unknown. It's not until you explain your situation to someone and see the horror on their face that you yourself realise how abnormal your life has become.

You collapsed twice at home?


But you didn't come in?

No. It happens pretty frequently.

So how do you normally manage the pain?

I just try and ride it out. It always decreases eventually. If I can't walk Mr Grumpy carries me. You learn to manage.

*look of horror and incredulity*

Anything becomes normal after a while.

The term Chronic Illness fails to capture the essence of life living with perpetual illness. Chronic means every day, day after day, week after week, month after month, year after year. It means the pain doesn't go away. It means it doesn't get better. It means that the fatigue and nausea and weakness and all the other symptoms are not going anywhere. It means that even on the good days, the underlying illness is still there and can raise it's head at any time. It means for me and many others that cure isn't an option. It means that management is key. It means no matter how many positive memes, ill advised medical advice or well meaning suggestions you throw at me, it won't fix my medical issues.

That list at the beginning of this post is me working my damnedest to get better, maintain my health and deal with the challenges my body throws my way. It combines with diet, exercise and meditation to try and keep me functioning. It is a full-time job. It's comparative shortness also indicates my need for balance. For maintaining some level of life and joy in the face of constant illness. When the choice is battling through medical red tape to access limited resources or lying out in my backyard looking up at the clouds, the choice isn't hard. Even if it isn't always medically responsible.

Sometimes I have more visits or less, depending on the state of my body. The type of interaction also changes as my symptoms and needs change. But overall this is pretty typical. A small glimpse into my life.

This is the reality of complex chronic illness. This is the reality of my last eight years. It is the reality for many other patients living this life. And my reality is a cakewalk compared to many others. But we get up and we do it again and again.

Let the next six months begin.


NB I had to remove the option for Anonymous comments as I was being overwhelmed with spam despite my best efforts.  

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

Thursday 5 June 2014

When the demons whisper.

I still apologise. I don't know why. Or maybe I do. I'm not sure I want to confront the reasons why. I'm not sure if I want to strip myself bare. And truly examine my internal dialogue.

Yesterday I found myself once again apologising. Whilst bent in two and hoping against hope that I could hold on long enough to find a public loo. Trying not to put extra pressure on my husband as he tried to both press through the traffic as quickly as possible whilst also adhering to road laws. I didn't see much of the trip as my head was on my knees and all my energy was turned towards avoiding vomiting in the car. As he wheeled me into the shopping centre I was still apologising. When I finally made it out I apologised again.

I heard his reply.

You don't have to apologise.

I heard it each time. Yet I kept on apologising.

There's a part of me that feels like I've failed him. That I'm not the woman he married. That our life isn't what he expected.

I mentioned the other day that he was my carer. He hadn't even thought of our relationship that way.

But I had.


That's the word that flashes into my head on the days where again I am begging for him to find a toilet, or when I say we have to go because I can feel my body slowly collapse, or I send him to a BBQ alone while I lie on the tiles of our bathroom.

I don't need for him to say it. I feel it everyday. I feel it every cancelled event. I feel it every day I can't prepare a meal. I feel it everyday another medical bill comes through. I feel it when the great unsaid raises it's head. Our finances are screwed over by my illness and all it has drained from us over the last eight years. I feel it every time I have to say

Not tonight.

I apologise because I feel he deserves better. I apologise because I am so reliant. I apologise because I can't be the wife I want to be.

I apologise for the distance that takes up residence on the days where dealing with the challenges of my body over-ride every other aspect of life.

I apologise for changing our life.

I apologise for broken promises.

I apologise for not being good enough.

I apologise for being.

The issue is mine I know. But I don't know how to change it. I want more for him. He deserves more.

So I'll apologise again.

And again.

And again.