A Very Quiet Anniversary

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“Let there be spaces in your togetherness, And let the winds of the heavens dance between you. Love one another but make not a bond of love: Let it rather be a moving sea between the shores of your souls. Fill each other’s cup but drink not from one cup. Give one another of your bread but eat not from the same loaf. Sing and dance together and be joyous, but let each one of you be alone, Even as the strings of a lute are alone though they quiver with the same music. Give your hearts, but not into each other’s keeping. For only the hand of Life can contain your hearts. And stand together, yet not too near together: For the pillars of the temple stand apart, And the oak tree and the cypress grow not in each other’s shadow.”
~ Kahlil Gibran, The Prophet

 

It was our seventeenth wedding anniversary yesterday.

And our day looked like this.

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And this. (That’s a boat made of ginger, filled with moxa – a total OMG treatment – wow!!! I’ll blog about that another day!)

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After which I retired to bed and slept for the rest of the day.

But that’s okay.

Sometimes that’s what love looks like.

I’m working hard with my awesome team at beating this enduring antibiotic-resistant superbug that has been causing so much havoc. It’s working. I’m improving. But it’s been quite the battle. And my regime is intensive just now.

We rescheduled yesterday’s wedding anniversary. Just like we rescheduled Ben’s birthday. And mine last year (which happened the day after major surgery and which ranks as the number one worst birthday of my life!). Hopefully, if my health keeps improving, we’ll be heading to Vietnam and then the Philippines in three weeks. We’ll celebrate everything there.

Meanwhile, I am feeling brighter this morning so Ben and Cafe Dog and I are off to town in search of a tasty breakfast.

Love to you all, Nicole <3 xx

Song of the Sisterhood

Image from www.new.vk.com

Image from www.new.vk.com

“A sister is a gift to the heart, a friend to the spirit, a golden thread to the meaning of life.”
~ Isadora James

 

 

These past few days have been hard. It’s been one thing after another. Then there’s the pain. It’s unrelenting. Drugs have helped take the edge off but it’s ground me down. The pain, and the worry.

Sleep is eluding me. I’m so tired but I’m wired too. I can’t get comfortable. My body throbs and hums and stabs and aches. Late at night my head gets crowded with the wrong kinds of thoughts.

I’m trying to keep a positive outlook. After thirty years of poor health I’ve become an expert at downplaying everything. At diverting attention away from myself. At convincing others that it’s all good. Especially when it’s not.

If Ben asks me, I tell him I’m fine. Just a bit sore and tired. We smile at each other and hug a lot. Sometimes we catch each other’s eye and shake our heads because… fuck… we can’t seem to take a trick. So much stuff seems to have been going wrong all at once, after it had all been going so right. But that’s life sometimes, hey?

I’m okay, I tell my mum. I tell Dad the same.

I tell my sister I am a little worried, but okay.

Okay. Okay. Okay.

And I am. Honestly.

 

Yesterday I met a group of dear friends for a birthday lunch. We celebrated, and ate gorgeous food, and laughed and talked about all manner of interesting things.

I’d thought I’d gotten away with it. Not talking about myself.

But after our meal had been cleared away and all the presents opened, the birthday girl leaned across the table and fixed her steady eyes on me.

“So, Nic,” she said. “What’s going on with you? With your health? We’re your friends. We need to know.”

I couldn’t keep the stupid tears from overflowing my eyes. And I told them. I told them everything. Not just the facts, but the fears too.

My dear friends listened as I gave up all my pain and terror. They hugged me and patted my arms and held my hands and passed me tissues.

Then we traded stories. We held space for each other and the messiness and uncertainties of life. We worried for each other, and we cared.

 

Afterwards I felt so much better. So much lighter.

I hadn’t realised what a burden it was to be lugging all of that around on my own.

 

It’s true, you know. I’m okay and I’ll be okay. I really mean it.

Besides, something beautiful happened yesterday.

I was lifted up by angels.

 

Feeling blessed to have such wonderful friends in my life. <3 xoxo

Apprehension

Image by SeveIV at www.seveiv.deviantart.com

Image ‘Train Tracks’ by SeveIV at www.seveiv.deviantart.com

“You should have seen this coming,’ they said. I did see it coming. I saw it coming the way you see a train coming when you’re tied to the tracks.”
~ Margaret Andrews

 

I’ve been awake since I don’t know when.

No, that’s not true.

2.36am.

I lay awake in the dark for a long while, willing myself to turn over and go back to sleep. But I was wide awake.

 

I thought about the doctor I will see today. I’ve seen him several times over the past twenty or so years. I thought about him sleeping, and hoped that he was sleeping well and deeply, untroubled by anything.

I wondered if he realised how many of his patients lay awake at night, apprehensive and counting the hours until their appointment. Then I hoped he never thought about it at all. How difficult it would be to labour under such thoughts.

My mind wouldn’t stop. I couldn’t steer it off topic for more than a few minutes. Slowly, dawn approached. My appointment is still hours away. No more sleep for me.

I got up early. I meditated. I sat down to write this blog.

Still, my thoughts are a jumble of worries.

 

Pointless, really.

I will see my doctor. I will get my test results. We will chart a path. I will walk the path.

The part of me that is the wise and coping part tells me I am okay, and that I’ll be okay.

The worried part of me snaps back, “Shut up!”

Which makes me laugh. Eventually.

I am okay, and I will be okay.

Worry never solved anything, nor made time pass more easily.

I’ll have a cup of tea instead. I’ll tidy something. I’ll wait for Ben and Cafe Dog to wake up so that we can have a lovely distracting outing.

And even so, I’ll keep on quietly worrying.

Nx

 

This Dawning Day

“Veil after veil of thin dusky gauze is lifted, and by degrees the forms and colours of things are restored to them, and we watch the dawn remaking the world in its antique pattern.”
~ Oscar Wilde

 

I woke earlier than usual today. 3am. The night air was cold, the comforter pulled right up to my chin, warm and snug around me. Outside it was raining. Cities are so different to farms. I could hear the occasional faint slick of tyres on wet roads, the sounding of a train’s horn and then the click and clatter of the rails, the muffled roar of a jet engine as another plane lifted off and headed for far away.

In the dark beside me was Ben’s rhythmic breathing. My ankles were pinned by the weight of Nurse Bert’s heavy head. Harry Dog stirred, crept up from the foot of the bed, and then nestled in behind my back. Too early by far to get up yet, but not to meditate. I eased myself up into a sitting position, reached for my mala and began.

An hour later it was still dark. Still raining. Around me everyone slumbered peacefully in the pre-dawn quiet.

I would have liked to creep down beneath the covers and go back to sleep, but my mind filled with busy-ness. I knew there would be no more sleep today. Instead I slid out of bed as quietly as possible and shuffled for the door.

I’m always so stiff in the morning.

As my feet made tiny halting movements in the dark, more sliding than stepping, I suddenly knew my grandmother’s body as my own. This is the way she would walk, old and frail but stubbornly independent. There are not many mornings I haven’t shuffled in the past twenty years. Most times I move freely once I warm up. But sometimes I hobble all day.

On the way to the bathroom I do my daily check. Glands up. Morning fever. Throat not sore this morning. Good. Pain? I note all the places. I rate them on a scale of one to ten. I rank my fatigue. My level of alertness. Can I form thoughts? Is my memory there or gone?

When I hit the light switch I wait to see if my vision stays blurry or whether the world around me becomes clear.

Not clear.

I still have limited vision from my left eye. It’s been three weeks now, this latest stretch. A lyme thing. To be one-eyed means that the world around me softens and shifts to two-dimensional. I have no accurate way to judge depth or distance. You’ll know if I have an eye thing. I’m always covered in bruises from where I misjudged the edges of my world. Thank goodness Ben drives me where I need to go, and helps me cross the road or navigate obstacles.

I have a host of coping strategies, and once I get out of my mind and my body and into my plans and dreams I am just fine. Life rolls on. I have found so many ways to thrive and keep going despite current circumstances. Overall, my health has been steadily trending in the right direction. I remind myself of this. Much, much better. I am much, much better.

It’s still raining. Still cold.

Harry Dog has snuck downstairs now to keep me company at my computer. I cradle a mug of ginger tea to warm my hands and my insides, and he curls around my feet and goes back to sleep, one ear cocked for any possible sign that it might be Cafe Time.

I’m on edge today, as much as I am trying not to be. I am off to the hospital this morning for scans. An old problem. One that sat in the back seat with a band-aid solution as my doctors and I worked on more serious issues – like heart failure and multi-organ failure, all of which are now sorted. Health problems are always triaged. I understand that. But this one has caused me no grief for a few years. I’d almost forgotten it was there.

I admit it. I’ve had a crisis of faith these past few days. To enjoy an overseas vacation, to feel health and energy and strength in your body, to feel almost normal, and then…

…and then to have increasing pain, increasing fatigue, a sudden recurrence of old problems. For these problems to escalate and then keep escalating. For your doctors to be suddenly concerned and taking urgent action – more scans, more bloods, more tests, more scans.

Well, it’s taken me a while to get myself back on solid ground again. For me to drag myself off the floor and be ready for whatever comes next.

I’m up now. I’m ready. Or I tell myself that anyway as I sip my ginger tea.

It is ironic, I think, that at the moment when it all goes to shit for me (again!) the pipe in our city house bursts, the rooms flood, things become a soggy stinking mess requiring immediate action. And it has been a glorious distraction. Thank goodness. Maybe that was perfect timing after all. Symbolic too, of everything needing a major clean-up, re-install and renovation.

I’m okay, and I’ll be okay.

That’s a well-used mantra in my house. It works. Trust me.

I’d better dress now. Fasting bloods for me at 6.30am, and then Cafe Time for me, Harry and Ben, while Bert gets a little more shut-eye, all snuggled up on our bed.

Today will pass by in the blink of an eye and tonight I’ll be meditating again, waking in my own warm bed again tomorrow and reaching for my mala beads. I’m okay and I’ll be okay.

Much love to you all.

Nicole xx

Where’s Your Focus?

Image from reddit.com

Image from reddit.com because, well, pirates! And you know how I love pirates. 🙂

“Very occasionally, if you pay really close attention, life doesn’t suck.”
~ Joss Whedon

On Friday I posted about a beautiful ordinary day, and how much I had enjoyed such simple things as a trip to the farmers’ markets, clean sheets on the line, sunshine and crisp ripe apples.

After that post I received two emails, extracts of which are below:

That might be fine for you, Nicole, but not all of us live in Byron Bay. Not all of us have a beautiful life.

and

You obviously aren’t that sick, although you say you have lyme. No person with a chronic illness could enjoy the kind of life you have.

I guess that I need to be honest then, and admit that not all of my day was what you might consider beautiful. In fact it was downright ordinary. But I omitted those details from my Friday post.

I can list those things here:

  • As a result of my current course of drugs I have neurological urinary incontinence. I wore an adult diaper to the markets.
  • As a result of the drugs, the bacteria dying, and my poor liver not coping with increasing levels of toxicity I was covered head to toe in a fierce rash and weeping eczema. Agonising, and ugly too.
  • I was plagued by a sense of impending doom – the kind of feeling a psychic gets when they know something is about to happen, over which they have no control, but by which they will be impacted.

Here’s a photo of me a week ago, just before my last round of IV drugs. It was the best I’d felt in months and I was teaching myself how to take a selfie so I would have a picture of me for my new website. It was fun. I put on lipstick, and wore a jacket that made me look dressed for going out. I like this photo. I have clean hair, I’m standing in my garden on a bright autumn day, and it’s a headshot, so you can’t see my pyjama bottoms or my big-girl pull-up incontinence pants. About four photos later I worked out how to look into the camera instead of at my hand…

Nicole Cody

And here’s a couple of me taken last Thursday in Brisbane. Just before beautiful ordinary magical Friday. Here’s the rash that began to creep up my limbs and made me want to claw my own flesh off my bones.

lyme rash hand

Here’s my face, which was covered in blotches. I won’t share the photos of the weeping, bleeding rash behind my knees, under my arm and right across my chest and left breast. My face went that way too, by Friday morning.

Why am I sharing this? I have lived with chronic illness and daily misery for thirty years. That thirty years has taught me a lot. Once upon a time I would have been the person who sent plaintive, judgemental or whiney messages to others, whom I felt had no idea how much I was suffering and no right to say that life was good, when it plainly wasn’t.

But that kind of thinking ruins any chance you have of having a rich and satisfying life.

So I adjusted my focus.

No matter how crappy my day gets, I look for beauty. I look for the small pleasures, the tiny details of comfort and joy, the things that will make my day memorable, or at least tolerable.

It’s become one of my superpowers. And it could easily become one of yours.

We can’t always control what happens to us, but we can control how we react, we can control our thoughts, and we can control our focus.

On Friday I didn’t focus on my distress and discomfort. In fact, I worked hard to not focus on them and to look for the beauty around me.

As I ate my dinner in front of the fire early on Friday evening I reflected that it had indeed been a very beautiful ordinary day. That’s my secret. I know that every day can be a beautiful day, or at least have elements of beauty hidden within it, just waiting for an observant eye and an open heart.

So, I have to ask you…

Where’s your focus?

Image from quotesicons.com

Image from quoteicons.com

View From My Windows

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“Set wide the window. Let me drink the day.”  ~ Edith Wharton, Artemis to Actaeon and Other Verses

 

My windows are both real and figurative. The picture above is the view from my bedroom window. This view changes hour by hour, and affords me much pleasure. In the early mornings the sky is grey, before becoming silver and gold, welcoming in the day.

I can tell if it has rained or not by looking at the leaves and smelling the air. Birds constantly visit the flowers in the trees, singing and feasting and spreading their special kind of joy.

Occasionally a cow walks past on its way to water. I know this, even if I am lying down and cannot see that far, because my ever-alert ‘cow detection system’ (see image below) goes into full surveillance mode.

At night I can watch the transit of the moon as she wanders across the sky trailing stars behind her. 2014-02-24 10.13.46 There is another kind of window that is precious to me right now too. It’s the first few hours after waking.

This is my little window of ‘feel-okay’ time before I take my lyme drugs and herbs, from which I descend back into pain, confusion and suffering. It’s the time where I write, meditate, and remind myself why I am doing this. (I am doing this to kill the bugs. I am doing this to be well. And it WILL be worth it!!!)

My morning ‘window’ is the time where I can actually be present with my husband. If I have a tiny bit of zest we may even go for some kind of outing. It’s the time where my life still resembles, if only a little, normality.

Looking Out The Window by Peter Ilstead

Looking Out The Window by Peter Ilstead

There’s one last window I have come to know. It’s the one my soul looks through, watching me as I live my life. That wise part of me which knows that all of this shall pass. The part of me that is filled with love and peace.

Our lives are fragile, transitory, wondrous and beautiful things – every hurt, every hope, every moment. I’m glad for mine, even though the journey has often not been easy. The view from my windows is still magnificent.

Sending much love to you, Nicole xx

Unexpected Blessings

Original image source unknown

Original image source unknown

“Women are never so strong as after their defeat.” 
~ Alexandre Dumas

I admit it. Yesterday, for a moment (or perhaps a little longer) I wondered how I would pick myself up and keep going.

I cried.

A lot.

My doctor wants me to continue with another full course of the horror drugs which had me counting the days and hours til I was done with them.

Six more weeks.

And this shall then be followed by more drugs which I’d previously not got on well with, in different combination.

Oh. My. Goodness.

So – drugs. I needed to buy more drugs. Yesterday, after my doctor’s appointment, Ben dropped me out the front of a shopping mall because it was crowded and he needed to park the car a great distance away. I am not up to walking far right now, and my progress is a snail’s pace. I wasn’t even half way to my destination – the pharmacy – when he had caught me up. I cried a little when he did. He had already been to the pharmacy and was doubling back to look for me. “God, you worry me,” he said, his face so sad and filled with compassion. He took my arm and steered me on my way.

After we’d dropped in my fistful of scripts and bought some supplies for our few days in Brisbane we headed back outside, where Ben left me in the shade of the front entrance while he went to fetch the car.

I felt fragile; so tired and weak, as I wondered how I was going to do this thing.

And then, out of nowhere I was enveloped in the biggest of hugs. A client, who is also a dear friend, had spied me as she sat in a cafe. Behind her other friends and her partner followed, all of them with hugs and kind words.

Their love lifted me up.

Image from Travelling Yogi

Image from Travelling Yogi

At home I changed into my pyjamas, ready to lie down and rest. As I took off a bracelet and placed it in a bag, something fell out at my feet. A little medallion.

I picked it up and turned it over in my hands. And began to laugh.

A few days ago I was talking to my sister about our family tree. ‘Did you know we have a Saint in the family?’ she asked. Of course, I didn’t. As we talked I googled her: Saint Margaret, the Patron Saint of Scotland. ‘You can get her prayer card,’ Simone said. ‘But I don’t know if she has a medal…’

Not being Catholic neither of us knew much about this whole Saint thing at all.

We both then agreed that it would be handy to have a Patron Saint. I googled Patron Saints for the rest of that afternoon, quickly becoming overwhelmed, and finding no-one that really jumped out at me.

The medallion that fell out at my feet?

My Saint Peregine medal

My Saint Peregrine medal

I found it on the ground outside a pie shop in a little town called Childers about four years ago. It was worn and grubby, and I had no idea what it was, but I slipped it in my pocket and brought it home, where it’s lain forgotten ever since.

It’s actually a Saint Peregrine Medal. Saint Peregrine is the Patron Saint of serious illness, cancer, AIDS and so on.

I said a little prayer, and I’ve placed that battered medal on a chain around my neck. It seemed like the right thing to do. It makes me feel that somehow, everything will turn out just fine.

So, out of a difficult day I received more Blessings than I’d ever expected. Isn’t life the most wonderful adventure?

Image from Hatke Quotes

Image from Hatke Quotes