A Little Nicole Update

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“People who want a cure, provided they can have it without pain, are like those who favour progress, provided they can have it without change.”
~ Anthony de Mello

 

So, here I am, still in hospital.

There have been a few little bumps in the road, including a massive resurgence of lyme symptoms and herxing, post-operation, as I was filled with what seemed like enough antibiotics and other drugs to treat an entire small pox-ridden and hurting country. My poor body has endured a bit of a rough ride. I’m bruised and bloated and scarred and bandaged. Wings of my hair have literally gone white overnight. It’s oddly fascinating.

As well as my four-hour surgery, I have needed to deal with unexpected bladder problems and surgery, lyme-induced loss of vision in my left eye, loss of balance, light sensitivity, bone and nerve pain, raging insomnia and terrible constipation and nausea from my pain meds.

And still, my doctors are pleased with my progress and I am healing well.

Between the pain, the constant intrusion of nurses doing observations, and the insomnia, that’s a lot of time awake. That’s a lot of time unable to be filled with television or books or iPad games or writing thanks to my dodgy eye. (I am writing this with a 200% screen magnification and one eye resolutely screwed closed. It’s taken me about fifteen spurts of energy and then rests to get all of this written; not my usual efficiency – but these are unusual circumstances.)

What can you do when you are in pain and unable to use external distractions? When you want to be able to work on your book but you can’t see to read the words?

I can happily report that I have spent most of the past eight days back in the Kimberley, with my Aboriginal Aunties. Using my imagination and memories as a portal I have returned again and again to the places and people so dear to me, and that form the backbone of my memoir.

I have sat with the late night silence and the loneliness, and spun them into a ladder to elevate me beyond my pain.

I have practiced deep listening.

I have meditated, and I have prayed.

I’ve also time-travelled back into myself. The hours between eleven pm and four am seem well-suited to reflection and analysis of my life. I’ve dug deep into places I had long covered over. What did I really feel? Why did I really make one choice over another? What emotions were in my body? Where was my head? I’ve strung the answers like beads on a mala, knowing that as I hold each one when I am able to come back to my writing I will remember, and that this new understanding will better inform my work. I’ve come to a more honest place. A kinder place. There has been much forgiveness this past week, of myself and others. My stay in hospital has gifted me clarity, and a way forward, finally, to be able to finish this book of mine, and get it ready to send out into the world.

The other thing I have done is gather life stories and vignettes; stories about the nurses and their lives, stories from cleaners and room service tray attendants, from the other patients who are limping slow laps of the ward as they push their drip stands or lug their wound drainage bags and catheter bags, tales from ward orderlies and the lady who brings the morning newspapers. People are endlessly fascinating to me, and their shared stories remind me that we are so alike in our differing journeys and struggles.

For we all face struggles. That is the nature of life. If it’s not one thing, it’s something else.

Even so, it’s a beautiful journey, life. I’m very grateful for mine.

Things will be back to normal, little by little, here on the blog and in my everyday world. I’m okay with things needing to be slow. Slow is all I can do for now.

I’ll swing by here again just as soon as I’m able.

Hugs and love, Nicole❤ xx

 

 

The Very Valid ‘Not Coping’ Style of Coping

teapot portrait

Image by Lauren O’Neill. You can view her work here: www.laurenipsum.ie/projects

“It’s funny: I always imagined when I was a kid that adults had some kind of inner toolbox full of shiny tools: the saw of discernment, the hammer of wisdom, the sandpaper of patience. But then when I grew up I found that life handed you these rusty bent old tools – friendships, prayer, conscience, honesty – and said ‘do the best you can with these, they will have to do’. And mostly, against all odds, they do.”  ~ Anne Lamott

 

Hi. Lovelies.

Gee. It’s been one of those weeks.

So, I was sitting in my lounge room yesterday morning, crying. Not blogging.

Crying because I was in agony. Crying because all I wanted to do was pee and when I did it felt like I was pissing razorblades. Crying because everything hurt. Because I was herxing from the antibiotics for my urinary tract and assorted other infections, and these same antibiotics were playing havoc with my Lyme bacterial load. Because of constipation from the pain meds. Because my stomach was so grossly bloated that none of my clothes fit. Because I’d been vomiting from pressure on my stomach from my wildly overgrown fibroids. Because I’d begun to be attacked by Gorn, after two years Gorn-free and hadn’t slept all night.

Crying because of constantly leaking urine like one of those dodgy teapots that always dribble from the spout when you pour.

Crying because it was only three more days until surgery, and instead of dreading it, now it couldn’t come soon enough.

Everything was hard. I was exhausted. Broken. Pain-wracked.

Miserable.

I’d wanted to blog but my brain was empty. I’d thought to maybe do a little work, but I could scarcely sit upright. All my plans were out the window. It was all just mess.

“I’m not coping,” I sobbed to the empty room. “Not coping!”

“NOT COPING!!!!!!!!!!!!!!!!!!!!!!” I screamed that one.

After which I cried some more.

As I calmed down from heaving sobs to simple snivelling, I realised something quite profound.

It wasn’t true.

I AM coping. Not very well, and certainly not with any great elegance or panache. It’s fair to say that I am just limping along right now – held together with duct tape, spit, snot, drugs, meditation, cobwebs and sighs.

Is that coping? Well, I’m still alive. I’m making it through the day. I’m hanging on. When I thought I was at the end of my rope, after a while I saw that the rope was longer.

So I stopped snivelling, wiped my face and laughed at myself. Kind laughing, mind you. The sort where I patted myself on the back comfortingly, seeing myself as an overtired and distressed child. I was flooded with compassion for myself. It’s a completely shit space I’m in, and it’s totally okay if my style of coping is a not-coping style right now.

I want to let you know that it’s okay for you too – if you sometimes find yourself in a not-coping/coping kind of a space. Life is messy and hard and unpredictable. Sometimes we ride the crest of the wave, high on life. Sometimes we are deep beneath the suck and pull of a massive tsunami.

I’m not alone, I reminded myself. I prayed to my loved ones who’ve crossed over to look out for me, and I called on all of my Guides and Angels and God to look after me and my husband and all of our family and friends. (That’s you too, of course!)

Then I went and made myself a cup of tea.

 

Later that same morning, my kind friends Bek and Lizzie popped round for an hour. They brought pre-birthday treats and balloons, and we had a sharing of troubles and laughter.

The balloons themselves had a special message for me. Yesterday would have been my beloved Nana’s 101st birthday. Not only that, each year when I was little, Pa would give me a special balloon as one of my presents. A marbled one of pinks and blues and whites, in an era where most balloons were just one colour. Nana would always have sticky bun, as well as cupcakes with pink icing for me.

My friend Lizzie brought me some of those same balloons Pa used to give me. Bek brought me cupcakes and sticky bun. Coincidence much?

cool party candles

Check out how cool those candles are. The flame is the same colour as the candle!

“If you can’t laugh when things go bad–laugh and put on a little carnival–then you’re either dead or wishing you were.”
~ Stephen King

balloons and cake

Yeah, I know. Those balloons look like weird inflatable boobs. Did I mention it’s been one of those weeks?

I was in pain and my body felt like it had been hit by a truck the entire duration of their visit. But my soul was happy. My heart was full. And after they left I lay down and slept for a few blissful hours, feeling my grandparents watching over me.

If not-coping coping is the best you can do, then that’s enough. And remember, you’re never alone. Reach out to your loved ones, to the Angels, to your friends and family.

I’m thinking of you, and sending love,

Nicole❤ xx

 

 

Boobs!

THE WOUNDED AMAZON, Marble statue Metropolitan Museum, NY: wounded Amazon (Roman Copy, probably after Polykleitos or even Kresilas or Pheidias) c. 450-425 BC.

THE WOUNDED AMAZON, Marble statue Metropolitan Museum, NY: wounded Amazon (Roman Copy, probably after Polykleitos or even Kresilas or Pheidias) c. 450-425 BC.

“The truth of the story lies in the details.”
~ Paul Auster

 

Sorry. I couldn’t resist. When else would I get to shout ‘Boobs!’ as a title for a blog post?

Because today, dear readers, it’s all about boobs. My boobs.

Today is mammogram and ultrasound day as my very thorough specialist ticks every single thing on his rather big checklist in my lead-up to surgery.

Hoopla!

Although, to be honest, like all the other tests I’ve done thus far I don’t expect it to be fun, or even comfortable.

So it’s boobs all morning for me.

Then a spot of lunch in the hospital cafe.

After which they will look at my heart, which means more boob action really…

 

I’ll be quite busy while all the medical technicians and doctors are doing their thing.

I’m carrying around a snippet of my memoir in my head that needs some editing. It’s a wild space in the Kimberley where my aboriginal aunties took me once, so that they could show me a special little bird. As the hospital machines click and beep, and things are done to my surrendered body, I’ll be focusing in on the landscape of my mind, doing my best to remember in vivid detail the smell of the dust and the heat of the sun so bright in the sky that I could only squint beneath the brim of my broad hat. I’ll think about the wonder of this hidden place my aunties showed me. The way we left our vehicle and walked single file along the track to find it. The way the sunlight sparked on the water in the creek. The steep cool rock walls and the lush green foliage. The chirruping calls and flash of wing. The way we all waded into the water in our clothes and sat down silently. All of us watching, watching and waiting. Waiting for the little bird to appear. That’s where I’ll be today. I’ll be back in time, someplace else, happy and safe, remembering.

I’m sure it will be a useful day all round.

Lots of love to you all,

Nicole❤  xx

Accidental Angels

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“A magpie can be happy or sad: sometimes so happy that he sits on a high, high gum tree and rolls the sunrise around in his throat like beads of pink sunlight; and sometimes so sad that you would expect the tears to drip off his beak.
This magpie was like that.”
~ Colin Thiele

 

I’ve had a restless night.

Pain. Broken sleep. Fevers.

But I came back into my body after a few hours of snatched sleep, and as I lay there with my eyes closed I heard angels singing.

It pleased me, and I nestled down in the pile of blankets and pillows, listening to their music.

It was only after a long while that I came to realise that it wasn’t angels, but magpies. They were sitting on the powerline just outside my bedroom window, deep in song.

I had no idea what time it was. Only that it was early, and dawn was a mere suggestion in a scrubby sky of low cloud and streaky stars.

 

Feathered angels.

What a blessed start to my day.

Here are some rather bedraggled magpies who sound a lot like the ones who sang for me…

What Happens When Someone Believes In You

“You may be the only person left who believes in you, but it’s enough. It takes just one star to pierce a universe of darkness. Never give up.”
~ Richelle E. Goodrich

 

Memoir is a funny thing for taking you walking into places you would rather not remember. I was thinking, last night, of a time when I had all but given up on myself.

1987.

I was so young then. Barely just begun at University. In a body that was falling apart. In a life that was falling apart. An over-achiever who was failing at everything. And in that terrible place of not being believed when I said that something was wrong.

For something was wrong. Very wrong.

For months I woke bathed in sweat and wrestled fevers through the day. My joints ached and swelled. My heart thumped in my chest and missed a beat or two whenever it felt like it.

The music I’d been been able to read since I was a small child became a spaghetti tangle on the page. I lost my ability to remember information or to place things into a logical sequence of events. Numbers became meaningless.

I forgot where I lived, and the names of people whom I’d known for years.

I fell down in the street, my legs giving way beneath me for no reason.

My legs jigged and danced in bed at night, no matter how I tried to keep them still.

And there was pain. So much pain. Ice-picks being buried in my head. Nerve pain roaring behind my left eye and rendering me sightless from that orb for days on end. Cramping pain. Dull pain. Electrical pain. Sharp pain. It moved all round my body, making a liar of me. No-one has pain like that. Except that I did.

Then there were the rashes that came and went. Exhaustion so overwhelming that it was all I could do some days to lift my head from the pillow. Infection after infection.

So much of my life became blurred. Slowly I was losing myself. That much I knew.

Our family doctor told me that I had women’s troubles, and prescribed valium.

A second doctor suggested anti-depressants, and theorised that I didn’t have the heart for serious study. Why not become a shop assistant or a secretary instead? Or surely I had a nice boyfriend I could marry? Motherhood was very satisfying, I was told, even though modern girls thought they knew better.

When I continued to question my diagnoses, and to ask for my doctors to be more investigative I was referred to a psychiatrist.

Who sent me to a neurologist, just to be thorough. Where I promptly spiked a fever and collapsed. So the neurologist sent me to his friend, Doctor Richard Kemp, the Head of Infectious Diseases at the same hospital.

Doctor Richard Kemp was a man who listened. He was a man who cared. He took the time to conduct all manner of investigation over several weeks. Finally he concluded that I was suffering from an infection. His tests could not isolate it, but he was sure. It was like AIDS without the HIV he told me.

Doctor Kemp also told me, regretfully, that he was unable to treat me because he had no definitive diagnosis.

After which he said something remarkable. I believe you, he said. You know your body better than anybody else, and you know that something is wrong. I know that too. Do not let anyone tell you otherwise. Hold to your guns. Don’t give up. One day you will be proven right.

In my darkest days I have held on to that the way a drowning man would cling to a lifeline. To have someone believe in you and encourage you is a powerful thing.

Life-changing, actually. Because after that I began to fight, and since then I have never turned my back on me.

Fast forward to 2013 where I received a definitive diagnosis that proved Dr Kemp correct. I have lyme disease. It is an insidious infection that has rampaged through thirty years of my existence, and that – prior to my diagnosis – had almost killed me as I sat in cardiomyopathy and congestive heart failure, with a brain full of lesions and almost every major system in my body broken.

 

A big part of the reason I have endured is the encouragement I received from that kind doctor. I am still here. Still here, and now finally, because of treatment I am getting better day by day.

 

Who can you reach out to and support? Who can you encourage?

A few words, honestly stated, may mean more than you can ever know to someone who could use a self-belief boost. Destinies can be changed. Futures can be created. Lives can be saved.

 

And for those of you who are struggling? Please, don’t give up on yourself. You just never know when that breakthrough or answer or guiding light will come.

Holding you in my meditations and prayers, Nicole❤ xx

 

An Amazingly Ordinary Fabulous Day!

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“Do not ask your children
to strive for extraordinary lives.
Such striving may seem admirable,
but it is the way of foolishness.
Help them instead to find the wonder
and the marvel of an ordinary life.
Show them the joy of tasting
tomatoes, apples and pears.
Show them how to cry
when pets and people die.
Show them the infinite pleasure
in the touch of a hand.
And make the ordinary come alive for them.
The extraordinary will take care of itself.”
~ William Martin, The Parent’s Tao Te Ching: Ancient Advice for Modern Parents

 

Ordinary.

It sounds so boring, doesn’t it?

Except that it’s not.

As someone who has suffered chronic illness for decades, ordinary has long been a pipe-dream for me. To be ordinary, to have the energy of an ordinary person and to do ordinary things over the course of an ordinary day? Wow! WOW! That would be amazing!!!

Yesterday I had one of those days. An ordinary one. I woke early and meditated, helped my husband stack windfallen timber on burn piles, and then dragged the hose around my vegetable gardens and new fruit trees before we headed out to the markets and breakfast at a favourite cafe.

After breakfast we came home and I did a load of washing, and then worked on a new draft of my Year of ME Planner (stay tuned – it’s not too late if you haven’t started. I’m launching a mid-year intake on my course, and there is a June to December version of the Planner to help you make the most of the remaining half of this year! We’ll be launching Monday 23rd of May – or Sunday 22nd if you live on the other side of the world.).

2016-05-20 11.27.40Then I sat in the sunshine and coached two of my Deluxe Year of ME students via skype, and did an emergency reading for a client.

Washing off the line, the hose dragged up into the orchard to deep-soak a few fruiting trees, and a big pot of chilli made and on the stove for dinner.

Course uploads and a recording for one of my groups. A few facebook messages and comments on posts.

After dinner there was time to work on my memoir. A whole chapter rewritten before shower, meditation and bed.

It was a full day.

My brain worked.

My body worked.

I had energy.

I was happy and engaged and so, so positive and clear about my direction and my various projects.

At day’s end I wrapped myself in my blankets and promptly fell asleep. After a moment of worrying as to whether I had overdone it…

And this morning I woke after a great sleep, stretched, meditated and began the day feeling as good as I did yesterday.

Wow.

I think this is what well must feel like. Whatever it is, sign me up for more!

Ordinary is extraordinary. It’s deliciousness on a stick.

Hugs and love from a very grateful and slightly emotional Nicole xx

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Changing Your Perspective Changes Everything

Staircase Perspective by George Oze

“Most misunderstandings in the world could be avoided if people would simply take the time to ask, “What else could this mean?”
~ Shannon L. Alder

 

I met with a new doctor yesterday. It was a trial of sorts. I wanted to see if they would become my Lyme Recovery Plan A, or whether I would need to keep moving through my list.

I’ve seen this doctor before. In fact, they gave me my initial diagnosis. Then they told me that Lyme was very controversial, and that they would not be treating me for Lyme. They would treat all my other issues first.

This doctor is expensive, and arrogant, and I wanted a faster result. To give me a diagnosis and then tell me  you wouldn’t treat me for it? I chose another course, and a doctor who would treat me for Lyme straight up.

Now, four years later, I am back at this doctor’s door. And I have to tell you, the meeting didn’t go well.

They asked me what I’d been doing. They reviewed my results. They accused me of doctor shopping, because I had left this doctor’s care and gone elsewhere. They paced the room, questioning the decisions of my other doctors, including making statements about the doctors making rookie mistakes and bad calls that a first year medical student might make. These were mostly doctors who have progressed my health, and truly supported and helped me on my journey back to wellness.

It was hard to take.

When I told the doctor what I had been doing with my diet and other methods I was using for myself they said to me sarcastically, ‘Are you a doctor?’ before dismissing me mid-sentence and moving on.

I came out with a bruised ego, a battered sense of self, a handful of scripts and a list of new tests a mile long.

I didn’t like that doctor very much.

There wasn’t exactly any rapport or bedside manner.

As I waited for my husband to come pick me up I began to think that I needed to keep looking. That maybe this wasn’t my answer after all.

Even though so many circumstances had aligned to get me through their door.

I poured my heart out to Ben as he drove me towards the place where I might get my first tests done. If I followed through.

‘I don’t know,’ I said to Ben. ‘I’m beginning to think I should choose another doctor.’

‘Why?’ said my ever-logical husband. ‘This doctor diagnosed you when no-one else knew what was going on. You’re still on some of the treatments they initially gave you, that none of your other doctors were willing to change because your other doctors have been intimidated by this person, and because it seems that this doctor was right in all the calls they made. So this doctor has a big ego, and you don’t think you’re going to be friends? Does that remind you of anyone?’

‘No,’ I said grumpily. In my head I had already dismissed this doctor, and I was now working on my Plan B.

‘What about House?’ Ben said. (For those of you who don’t know, House was a TV show, and the lead character was Dr Gregory House, a genius investigative doctor whose behaviours made him less than endearing to the patients whose lives he saved.)

Ben put his hand on my leg reassuringly as we drove along. ‘Isn’t House a doctor who is arrogant and a pain-in-the-arse and rude and also brilliant? Wouldn’t you prefer to be treated by House and put up with all his shit if it got you better? Who cares if you don’t much like this doctor or if they hurt your feelings? They seem to know what they are doing.’

Wow.

In that brief moment my perspective shifted.

Ben was right.

I decided to stick with it and make this House-like doctor my Plan A.

Hooray for that.

Suddenly the ego and the attitude have become secondary, background issues, instead of my prime concern.

It’s all a matter of perspective.

After all, I didn’t like him to start off with, but in the end, House became one of my favourite characters of all time…

Image from www.tumblr.com

Image from www.tumblr.com