Grace In Plain Sight

“Un-winged and naked, sorrow surrenders its crown to a throne called grace.”
~ Aberjhani

 

You may have noticed that I’ve been uncommonly quiet here on my blog this past few weeks.

Those of you who’ve known me for a while will also know that if I’m ever quiet it is always for good reason.

Today, I want to share some good and some not so good news with you, in an effort to explain this current spate of absence.

My surgery back in early September went well, despite unforeseen complications. Hooray! Good news. But then I developed a urinary tract infection which turned out to be a superbug. Bad news. I was given an avalanche of drugs, and finally, finally, we were able to eradicate the infection. Good news. But in the process of eradicating the bug my vision was affected. Bad news.

I am currently suffering from a condition known as ocular toxicity. Small crystals have formed in my right eye, causing vision loss and double vision. It’s a rare side effect of the drug I was taking that was necessary to beat the superbug. The effects are usually permanent.

My left eye has already been hammered by Lyme disease, so my vision from that eye is not great. With all of the drugs I’ve been taking recently my optic nerve has become inflamed again so until two days ago I couldn’t see out of that eye at all either – a situation that began before I contracted the superbug. It may also have been damaged by the drug. I won’t know for a few more days.

Scary stuff.

When you suddenly can’t see properly, everything changes.

blind faith

Blind Faith by AronBack at www.deviantart.com

I’d be lying if I didn’t tell you that I have sobbed myself to sleep each night and been in the darkest of spaces this last little while. It seemed so cruel to have this to deal with, after everything else that has been my latest round of health battles. As a writer, to be unable to read or put words on the page has been an agony.

Each day I wake up hoping for improvement, only to find my world a blur. I can see shapes and colour but nothing has definition. My world is two-dimensional and rather terrifying. Overnight I have become clumsy and tentative. Dependent. Smaller, somehow.

But my left eye has cleared a little in the past forty-eight hours.

From experience I know that there is room for further improvement, and already I am coping a bit better with my new situation. I now have limited vision from my left eye, and using corrective glasses and vision impairment settings on my phone and computer I have managed to gain a little more independence. I can read large font for brief periods before I get a headache and end up exhausted from the effort. I’m cheered enormously by this latest development though. I expect to be able to read and write for short periods each day and with some creative thinking I should be able to get around most of these current hurdles and adapt to the vision loss.

My ability to see energy and auras hasn’t changed at all, thank goodness. If anything, my senses have become more acute.

I also have my fingers crossed that both eyes will improve over time, and I have a great team looking into all of this with me.

So, this is a turn of events I didn’t anticipate.

It’s one that has caused me many tears, and a great deal of distress.

But ultimately, no matter what happens to us, we find a way to cope and move on. I’ll be okay. Things will improve or I will learn to cope better with what is, and meanwhile I will keep asking for help and counting my many blessings. I’ll innovate in order to create. I’ll overcome, and where I can’t I’ll do my best to sit in a state of grace with it all.

My husband put it all into perspective for me. Would I rather have dodgy eyes and be alive, or be dead with perfect eyesight?

I’m doing my best to get up and running again. Sorry that all I’ve spoken about here on my blog lately has been health updates. I hope to bring you something far more interesting very soon. Thanks for your patience, and for your support. It means the world to me.

All my love, Nicole xx

PS: How cool is this Unicorn Eye Patch! It’s on my latest wish list 🙂

eye patch

Awesome Unicorn Eye Patch from www.youtube.com

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. ❤ xoxo

Poking Bruises

Image from ifunny.co

Image from ifunny.co

“When we are tired, we are attacked by ideas we conquered long ago.”
~ Friedrich Nietzsche

I’m still editing this memoir.

Because of that, I did something really dumb.

I couldn’t remember a detail about someone’s appearance. An old friend from the past. Turtle. What colour were his eyes? I couldn’t tell in any of the old photographs I have.

So I googled him.

There he was, standing beside his wife and child. Beside him, unexpectedly, the brother and wife of my ex-husband.

I clicked on the image, which led me straight to facebook.

And there, there was the life I walked away from. All of my ex-husband’s family. Their marriages. Their children.

I’d forgotten how much I loved them all. How dear they were to me.

Their children are young adults now, and I’d only known them as babies. Such a fine, big family. Still doing all the things that I once did with them.

Weirdly, some of those grown children look so much like me at that age that I could claim them as my own.

I didn’t know that this stupid simple act of googling one image would lead to this. My heart broken open. My stupid eyes overflowing with tears. My body one big bruise, and each image poking it harder and harder.

I’m not sorry that I am no longer married to my first husband. I love the life I have. I love my husband Ben fiercely. I’d never change places.

But seeing these images brought to my awareness, so strongly, all that I have lost after thirty years of lyme disease.

This morning I am hollow. I can barely talk. That’s okay. The Byron Bay Writers Festival starts today. So I shall go sit in big white tents and listen to authors speak about their books and their writing processes, and their beautiful ideas. And perhaps I’ll find a kindred moment, with someone else who poked a bruise as hard as me.

One of those nights…

“She used to tell me that a full moon was when mysterious things happen and wishes come true.”
~ Shannon A. Thompson

Tonight will welcome May’s full moon.

I love a full moon. Unfortunately so does lyme disease. Many lyme sufferers find an acute ramping up of their symptoms in the day or two before a full moon.

Last night was a hell night for me. At the edge of sleep I woke up to that horrid wide-awake place. After which there was pain so bad that sleep, if I could have found it, was out of the question anyway.

Today I am barely functional.

It goes like that sometimes.

I’ll try and catch a nap today, and then brace myself for tonight. Or plan to be awake anyway and have a good book to read, a meditation to do, or some other welcome distraction.

It’s been a long while since I had a night like last night. They used to be a regular thing. So I know I’m improving. Gee, I HAVE improved so much. But lyme disease and its co-infection friends are still reminding me they’re here.

Truth be told I’m a bit over it today. A bit cranky. A bit disgruntled. A bit disappointed because of all the things I’d planned for today that will undoubtedly fall by the wayside now.

On the upside? The moon was beautiful last night, and the air, after all our recent rain, was sweet and cool and earth-scented.

To watch the transit of moon and stars across the dark bowl of the sky was a decent consolation prize.

Here Comes The Sun

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“As the years pass, I am coming more and more to understand that it is the common, everyday blessings of our common everyday lives for which we should be particularly grateful. They are the things that fill our lives with comfort and our hearts with gladness — just the pure air to breathe and the strength to breathe it; just warmth and shelter and home folks; just plain food that gives us strength; the bright sunshine on a cold day; and a cool breeze when the day is warm.”
~ Laura Ingalls Wilder

 

Usually I’m quiet on the blog because Lyme Disease has me laid out and I’m in no shape to write.

I’m happy to report that my absence over the past few days had nothing to do with Lyme and everything  do with Mother Nature. After a hefty amount of rain I ended up flooded in, with no power and a flat battery on my phone. To add to the feeling of being a homesteader the hot water system developed an airlock, so no hot water either.

This is what my world has looked like. And the inside of our little farmhouse was equally gloomy.

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A few days ago my husband packed the ute, took Harry and drove to Brisbane and then travelled on to the farm of an old friend. So Bert and I were home alone.

What to do in a cold, dark house?

We napped. And napped. And napped some more.

Meanwhile a whippy six-foot tree snake took refuge on our front veranda, out of the rain. He was long and slender, with a deep olive body and a bright yellow belly.

At the back door our large resident male carpet snake stretched out on the still-warm concrete, and settled in for the duration.

I was grateful to have a side door so that I could still slip out to our bathroom, which is in the back corner of the veranda.

Then late yesterday afternoon, a few hours before Ben was due back, the rain stopped and the snakes departed. An hour later the power came back on. Forgetting that the hot water wasn’t working I turned on the hot tap in the kitchen and it spluttered and gurgled and then burst into life.

By the time Ben and Harry got home everything was back to normal. They’d missed the entire adventure!

This morning the sky is the most exquisite blue. The sun is shining, and our world  is green and lush.

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The air is clear and clean. It smells so earthy and good that I want to eat it with a spoon.

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The plants are growing like triffids, and flowers are everywhere.

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After being cooped up for so long dogs are ready for an adventure, and I won’t be needing that garden hose any time soon.

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Harry’s feeling healthy and happy and is ready for a game. So I’m keeping things short this morning.

Playtime in the sun is much more important today!

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A Lovely Night of Normal

“Become major, Paul. Live like a hero. That’s what the classics teach us. Be a main character. Otherwise what is life for?”
~ J.M. Coetzee

 

One of the problems of having a chronic illness like Lyme Disease is that so often you end up marginalised in your own life. If you choose to expend some of your precious energy in one area of your day, there’ll be none left for other choices. In fact, there may be no more energy for days.

Because of that, life usually dwindles to a handful of survival skills, and a few crumbs of a greater existence that you do your best to grasp and experience as deeply as you can. If you can. When you can.

As Lyme has stolen my moments, my energy, my social life, my cognitive function, my family, my bodily functions, my years, the one blessing is that I’ve mostly been too ill to care.

But I’m actively healing now. Life is changing. I am changing.

I am reclaiming this wider sense of me.

So, in that spirit, I celebrated Christmas with a staff party this year.

Party? Dinner, really. Nothing too wild. And staff? So far I have just one. Although my dreams are big. 🙂

I just felt the need to say thank you. To my one staff member, to my darling husband Ben, who is my greatest support, and to the Universe, which has conspired with me to change my fortunes and expand my horizons.

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This little party was so important to me – so symbolic and imbued with meaning – that I deliberately stopped my Lyme meds long enough that I would be able to enjoy an alcoholic drink or two, like a real proper grown-up healthy person!

Dana, my wonderful PA, came over to my house in the afternoon and we talked hair, clothes and all the sorts of girly things I haven’t done for years. It reminded me of when I was back in College, getting ready for a big night out. Oh, it was thrilling.

Late in the afternoon I washed my hair. I thought about what I would wear. I painted my toenails!

Darkness fell, and out Ben and I went. We met Dana and her husband at a beautiful Japanese restaurant, and sat at a table with a view out over the sparkly night.

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We ate delicious food, I enjoyed TWO excellent Asahi beers (I had planned cocktails, or champagne, but in the end, after such a hot day, those beers were mighty fine!), and then, some of the last diners to leave, we ventured out into the tropical evening and caught a taxi home.

Today it’s back to green smoothies, detox food, and my usual routine of pills, potions and therapies.

I’m hope-filled right now. To be reclaiming these small spaces in my life feels like a miracle.

Today I’ll be planning my year ahead; with my journal, my coloured pens, and the reading I gave myself on the Soul Sanctuary Retreat.

I wonder how many people shall be gathered at my Staff Christmas Party table in 2015, and where we might be?

How exciting it will be to see this next year unfold!

How about you? What are you planning, dreaming and scheming for 2015? I’d love to know!

Much love to you, Nicole xx

Image from flickr.com

Image from flickr.com

Lit up like a Lyme Green Christmas Tree

Image from Thinkstock

Image from Thinkstock

“You’ve gotta dance like there’s nobody watching,
Love like you’ll never be hurt,
Sing like there’s nobody listening,
And live like it’s heaven on earth.”
~ William W. Purkey

 

Well, you know by now that when I’m quiet there’s a good reason.

This time?

My doctor recommended a new combination of Lyme drugs.

Result?

A night of small seizures and a misbehaving brain.

The drugs are well prescribed, but the dose was too high and too many lyme bacteria and their associated friends died too fast, releasing toxins into my brain, after which I did that herx-induced shaky-limbed, sweat-soaked seizure dance all night.

I also woke with my voice totally gone.

Two days of sleep, no meds and lots of binding agents to remove all those toxins and I’m almost back to normal.

Normal for me, anyway. Normal right now is: my hands and feet are burning and yet strangely numb, there is a pain behind my ear that won’t shift, my vision is blurred in my left eye, I get intermittent stabbing pain in random parts of my body, feelings like electrical shocks get me up in the middle of the night, and after I eventually sleep I wake soaked in sweat. Don’t let it get you down though. I don’t. This is nothing compared to some of the Lyme-induced misery I’ve suffered.

It’s actually okay for me. I can deal with most of these problems, and it’s far better than where I was a year ago. Two years ago. Back then I was just this side of dead. My improvement since then has been legion. I mostly have a wide smile on my face. Because? Progress!

It humbles me, the power of these tiny critters who have wrought so much damage in my body. I no longer under-estimate them or think that simply taking drugs will be an easy fix.

While at the doctor’s on Monday I also got my latest bloods back. After two years of targeted high-dose antibiotics, herbs and essential oils I have the best blood and hormone levels and organ function I’ve enjoyed in decades. The upswing in my body is amazing. And I can feel it!!!

I can honestly say I’m winning now. Battle weary as I may be.

Best Christmas present ever! 🙂

But oh how sad that I have had to fight for thirty years to get a diagnosis, that lyme disease is still not acknowledged by most of the Australian medical community, and that effective treatment is something I continue to fight for rather than a right, as it is for so many other diseases and conditions.

If I must live in the Lyme Light, then at least let me help others to know that there is hope, that there can be healing, and that things will change. I will keep pushing for that change. Hang in there, Lymies!

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For more information on Lyme disease go to: 

Lyme Disease Association of Australia

Karl McManus Foundation Australia

Lyme Disease Association, Inc United States

The Canadian Lyme Disease Foundation