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.

Breathing Yourself To Sleep

“Feelings come and go like clouds in a windy sky. Conscious breathing is my anchor.”
~ Thich Nhat Hanh

 

Do you ever have trouble getting to sleep, or falling back to sleep if you wake up during the night?

One of the great issues that many lyme sufferers (like me) experience is insomnia, which may also be coupled with pain. Of course worrying about lack of sleep or having a brain that won’t switch off only exacerbates things. But we can’t heal if we don’t sleep.

Many years ago a meditation teacher taught me a simple mindful breathing exercise, which has now helped me get to sleep more times that I care to mention, even in the face of great discomfort. This breathing exercise is easy to do, and it helps settle our bio-chemistry so that we can more easily move into that space of deep relaxation and sleep.

Whatever the cause of your insomnia, I highly recommend this simple breathing exercise.

Here’s what you do:

1. Settle yourself comfortably in bed.

2. Breathe in through your nose for a count of four.

3. Hold that breath for a count of seven. (Don’t strain – if seven is too hard, try for six, or even five – as you become used to this exercise the holding part will become easier.)

4. Exhale through your mouth for a count of eight (or once again work up to this number if it is hard to get to eight at first).

That’s all you need to remember. 4-7-8.

As you do this meditation you will find that your mind quietens, your heart rate will slow and so will your breathing – all things that help us move into sleep.

Image from imgkid.com

Image from imgkid.com

Extra help: You may  like to try a little Lavender essential oil on the soles of your feet and on the back of your neck. Cedarwood oil on the back of the neck will also help.

Other uses for this cyclic breathing exercise: If you are studying or working and feel yourself becoming tired and losing focus a few minutes of this breathing pattern while you sit at your desk will help you to calm and settle. Stand up and go for a short walk afterwards and you’ll find yourself much more refreshed.

A Me Update

Image from ibnlive.in.com

Image from ibnlive.in.com

“Solar Eclipse

Each morning
I wake invisible.

I make a needle
from a porcupine quill,
sew feet to legs,
lift spine onto my thighs.

I put on my rib and collarbone.

I pin an ear to my head,
hear the waxwing’s yellow cry.
I open my mouth for purple berries,
stick on periwinkle eyes.

I almost know what it is to be seen.

My throat enlarges from anger.
I make a hand to hold my pain.

My heart a hole the size of the sun’s eclipse.
I push through the dark circle’s
tattered edge of light.

All day I struggle with one hair after another
until the moon moves from the face of the sun
and there is a strange light
as though from a kerosene lamp in a cabin.

I pun on a dress,
a shawl over my shoulders.

My threads knotted and scissors gleaming.

Now I know I am seen.
I have a shadow.

I extend my arms,
dance and chant in the sun’s new light.

I put a hat and coat on my shadow,
another larger dress.
I put on more shawls and blouses and underskirts
until even the shadow has substance”
~ Diane Glancy

 

It’s been easy, in recent weeks, to forget for hours at a time, or even days, that beneath my skin lurk a host of bacteria. Lyme, bartonella, babesia and some other nameless beasts. They drill through the flesh and fluids of my interior. Many have been killed over these past two years as I have flooded my body with antibiotics, herbs and essential oils. But not all.

It’s the ones that remain which are so bothersome. Some have not been well targeted by any protocols I’ve yet undertaken. Others have cleverly changed form. They deconstruct parts of me and then rebuild themselves with pieces of my DNA, rendering themselves invisible to my immune system. They slough their cell walls and then slip into my own cells soundlessly, hidden from view. Hidden from drugs. Hidden from so many kinds of treatment.

These past weeks I haven’t thought much about all of these pesky invaders. Instead, I’ve tasted normal. I’ve known delights lost to me for so long I’d feared I’d never know a time for them again.

My body is stronger. My mind is working better. My immune function is the best it has been in years. So my docs asked if I felt ready for a round or two of more aggressive drug treatment before I went back to gentler, more natural methods of healing. Intuitively for me it was a yes – before I even got my bloods back. Yes. Ready. So, we began last week.

I’m lucky – I had the luxury of some free time before I need to be functioning well again for work. Weeks I had slated for writing time and a holiday before I gear up for my next retreats became the perfect opportunity for embarking on new treatment adventures. I knew this was right timing. It all seemed to fall so easily into place for me.

Except that I’d conveniently forgotten just how horrible such treatment adventures can be.

Oh.

My.

Goodness.

It started with vomiting and pain. My body did not like the drugs. Or what they were doing to me.

The misery ramped up as the bacteria within me began to die. Glands the size of golf balls. Night sweats. Fevers. Chills. Seizures. A tongue that rolled around in my head unable to grasp at words, or to make much more sense than a drunk. A brain on holiday. Night and day merged, hours merged. It got messy. Really messy.

Then there was the pain.

I’d forgotten about the pain, and how bad it can be. Body pain. Nerve pain. Brain pain. How did I ever live with this pain before? This loss of function? This rendering of myself into a million screaming and incoherent fragments?

There have been other delights too. Loss of vision. Confusion. Immense fatigue. The kind of fatigue where it takes all you have to lift your head from the bed, or to track your eyes across a room. Indignities such as loss of bladder control. Streaming eyes and nose. Rashes and shakes and parts of me misbehaving, no matter what my brain was bidding that body part to do.

Everything that had become easy was suddenly hard again.

But I know it’s not for long.

I know it’s just for this short window of time, after which this current treatment will end and I’ll step back, regroup and allow my body time for healing and rehabilitation.

There’s not one pill that will fix this. Not one magic bullet. I have thirty years of complex bacterial infection. On top of that, all of the chaos and damage those infections have caused to my brain, my organs, my central nervous system and hormonal systems.

What I’m doing to heal my lyme and co-infections is working. My results prove that. My daily life proves that. But it has taken a lot of gritted jaw to get through this last round of drugs and I have a few more weeks to go. Although I pray I am through the worst of it now.

I’ll tell myself that anyway. Just like I always do…

This is what life is. It’s what I’ve learned over time. Life is ups and downs. Mysteries. Breakthroughs. Dead ends. Wrong turns. Wrong turns that lead to the right places. Breathe in, breathe out. Place one foot in front of the other. Rest. Keep going. Keep growing.

In the ten days I have been on this new treatment three lymies (people with late stage lyme disease) I know have taken their lives. Too much pain, too much damage, not enough support, no access to adequate doctors or treatment, no light at the end of the tunnel, and they each reached the end of their respective ropes.

I understand that space. There have been times over the years – even the last two – when I have sat on that same bench, and had that same conversation with myself and those closest to me.

It puts my own illness into perspective, my treatment into perspective, my recovery into perspective.

I won’t do myself or this illness the disrespect of rendering the lyme journey down into a handful of trite new age slogans. Loving my disease, making peace with myself, loving myself – they’re all noble and worthwhile sentiments, and I honestly do my best. But how many people who got hit by a bus or a dose of MRSA from a hospital stay, or a life-threatening bout of meningococcal disease get those flags waved at them? Who of them would be expected to be healed by the simple waving of a crystal, the chanting of an affirmation or a thorough investigation of their past lives?

For me, a wholistic approach to healing means using intelligent diagnosis and solutions – a range of traditional and alternative treatments. Science. Ancient and modern. Spiritual practice. Drugs. Energy medicine. Herbs. Oils. Intuition. Food as medicine. Doctors and practitioners who use their brains in an investigative manner, allowing space for curiosity and open-mindedness, and a synergy of puzzle pieces. I expect that to be my own practice too. Of course there is room for magic and miracles, of course there is learning to be had. I’m open to it all.

Thanks for all your well wishes, and I’m sorry if my silence had you concerned. But you know me by now. Whenever I’m quiet so long there is always something going on.

I’m busy getting well. That’s what’s going on. Messy business, but I’m making progress, and things will be back to some semblance of normal here just as soon as I have the energy for it all.

Sending so much love your way, Nicole xx

Image from emiliesquotes.com

Image from emilysquotes.com

 

Feeling So Very Grown Up!

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“I feel wonderful and sad. It’s the gin.”
~ Stephen Beresford, The Last of the Haussmans

 

I know.

It’s a picture of a drink.

But it’s not just any drink.

That drink is a personal victory.

Let me explain….

For the next few days I’m attending an essential oils conference on the Gold Coast.

I’m staying in a fancy hotel. I’ll be in the company of people I adore, and I’ll be enjoying more adventures than I’ve had in quite a while.

But what is really making me excited is that last night I did something quite normal. (If you’ve ever suffered from a chronic illness you’ll know how exciting this really is!)

I was sitting in a lobby lounge with a girlfriend, when she decided that she felt like a drink from the bar. Without even thinking I agreed to have one too. The way I would have done so many years ago.

Just a simple gin and tonic, garnished with a slice of fresh lemon and one of lime.

It was refreshing, delicious and so very grown up. And this morning I feel absolutely fine!

How wonderful to reclaim a little bit more ‘normal’.

I know it was just one drink. But that one drink marked another milestone in my slow but steady recovery from lyme disease. Helped of course, by essential oils as part of my healing regime.

I’m looking forward to a day of learning today, followed by dinner tonight with good friends. I promise that if anything cool or amazing happens, I’ll let you know.

Hooray for being better and better!

Wishing you a day of magic and miracles too <3 xoxo

5d23d84c0bdedcf04bbab80454cfaf44

Saturday Night Lights

Image from chestersre.com

Image from chestersre.com

“There is no night life in Spain. They stay up late but they get up late. That is not night life. That is delaying the day. Night life is when you get up with a hangover in the morning. Night life is when everybody says what the hell and you do not remember who paid the bill. Night life goes round and round and you look at the wall to make it stop. Night life comes out of a bottle and goes into a jar. If you think how much are the drinks it is not night life.”

~ Ernest Hemingway, 88 Poems

 

I had a small adventure last night.

I drove ten minutes to a girlfriend’s apartment in town and then we took a short stroll to a charming Lebanese restaurant around the corner for an early dinner.

Do you know how many years it has been since I have ventured out at night on my own?

I forget sometimes how much Lyme disease has diminished my life. I’ve learned to live happily within a very small box. So small in fact, that I have become quite distanced and disconnected from things I once took for granted. I counted it. Twelve years. Twelve years since I have been out at night like this on my own to meet a friend for dinner.

Mind you, I didn’t think about that as I drove to my friend’s place. I was too busy concentrating on getting driving right. On listening to the twangy voice on my iPhone navigating me through the streets I once knew by heart. On hoping that parking would be easy and that my brain would work well enough to position the car without disgracing myself. Ben usually drives unless I’m having a very good day. I have not driven a car alone at night for some time. It makes me anxious as a learner.

When I socialise it is usually over breakfast, while I am fresh and have some energy. It’s coffee outings at early-morning cafes, if I am going out at all. By day’s end I am in my pyjamas, I eat early, meditate and retire.

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So last night?

It was still an early night by most people’s standards. I met my friend at six. By nine-thirty my night was over, and I drove homewards through Brisbane’s city streets and Fortitude Valley. I was a time-traveller sitting in the safe bubble of my car, my hands clenched tight to the steering wheel. Outside, my usual daytime vista was rendered unrecognisable. Bright lights obscured familiar landmarks. It was as if the world was on a strange tilt.

The restaurants I know only by early morning passings had been transformed from upturned chairs and empty windows to cosy places full of animated people. Queues of rowdy folk milled at traffic lights and outside bars and nightclubs.

Even my own suburban street was unrecognisable in the dark. I never knew one of the neighbours had fairy lights wound through the trees of their front yard just a few houses down from my own. Everything took on a shimmer of unreality.

It stirred memories in me of my younger days, and I was unexpectedly sideswiped by an intense grief. Where had my life gone? All those years between youth and now?

I already knew the answer. I have been at home in my pyjamas, while the world dined, strolled, drank, laughed, partied, romanced.

In my head I’ve been planning holidays for when I am well again. I am finally moving in that direction, so I have given myself permission not to just dream but to plan.

Helpful people keep offering me their kind and well-meaning suggestions. Most of them revolve around meditation retreats, detox places, quiet and solitude and nature.

Screw that.

Don’t get me wrong. I love meditation, my farm, tranquility, nature. But that’s been my life for over twenty years. And sometimes it has felt more like a prison than an oasis.

When I can rouse just a little more energy in these bones, then give me life. Give me people and culture and music and wine. Give me galleries and parties and cocktails. Give me noise and crowds and the thrill of the night.

Let me grab my husband by the hand, dive right in and immerse myself in those bright city lights.

Give me some night life.

I never knew until last night, just how much I’ve missed the throbbing heart of a city, and the part of myself that was once at home there.

Brita-Photography-_-no-one-looks-back-on-their-life-and-remembers-the-night-they-had-plenty-of-sleep1

A Slow Start is Better Than No Start

Image from xojane.com

Image from xojane.com

“Everything is created twice, first in the mind and then in reality.”
~ Robin S. Sharma

 

It’s fair to say that, thanks to Lyme Disease, I’ve experienced chronic ill-health for a long time. Over thirty years, in fact. And certainly in the past six or seven years, as I have battled with cardiomyopathy, congestive heart failure, severe breathlessness, low blood pressure and fatigue that was exacerbated by any form of physical exertion, it is also fair to say that I have done little exercise apart from stretches and gentle walking or swimming.

But I’m beginning to feel better.

Better enough that I want to exercise. And finally I have my doctor’s blessing to do yoga after not being allowed to for so long.

So, I dragged out my yoga mat, and in the privacy of my own home, all eagerness and optimism, I began the routine I had done easily and every day for years before my lyme-induced heart attack. Forgetting, of course, that I’d last done this yoga regime with grace and ease seven long years and twenty kilograms ago.

Except that I couldn’t do it. I didn’t bend, I couldn’t move my poor stiff body into any of the positions, and I fell over. A lot.

Do you know what I did then?

I cried.

I cried with frustration. I cried because I’d lost so much ground. I cried because I was so much worse than I’d thought I would be.

Honestly, I should have known I had no hope of getting through that advanced routine, but it was the only one I knew off by heart, and I hadn’t stopped to think that the thing I’d always been able to do would suddenly be so hard. After years of illness I’d lost my flexibility, my balance, my confidence. What was I to do?

Be kind to myself is what.

I turned to my trusty iPad and downloaded a cheap little app called Yoga Studio. From its clean screen of images I chose a fifteen minute beginner routine for back pain. To my delight the fifteen minutes flew by, and although I was not elegant or graceful, I managed to do some semblance of each of the poses. By the week’s end I’d progressed enough that I could complete the routine with a kind of flow, and I’d also noticed an improvement in my flexibility and co-ordination.

It will be a while before I am setting the Byron Bay yoga studios on fire. That’s okay with me. I have found a beginning place, a place where I feel the joy of success rather than the sting of failure.

A slow start is better than no start at all, and slow starts often lead to deep and lasting practice.

Is there some place that you can make a slow start this week?

Commit to something simple and small. You can build on it later, when you’re ready. But do start. There is so much power in starting. And continuing. Slow starts give you room to move and improve. They build confidence and skill. They set you up for success.

And gee, it feels lovely!

If you need a little motivation, this short and inspiring video should do it…

 

 

On Overcoming Obstacles

“Nothing in this world can take the place of persistence. Talent will not: nothing is more common than unsuccessful men with talent. Genius will not; unrewarded genius is almost a proverb. Education will not: the world is full of educated derelicts. Persistence and determination alone are omnipotent.” ~ Calvin Coolidge

 
I have always wanted to be a writer.

I wrote my first full book when I was four, complete with illustrations.

Writing was what I did. It was who I was.

But contracting Lyme Disease at sixteen changed all that. I began to lose words.

By the time I moved to the Kimberley, when I was in my mid-twenties, things were significantly worse.

I write about it here, in the draft of my memoir, based on that period in the Kimberley with my Aboriginal Aunties. At the time, my diagnosis (I’ve had many before Lyme) was relapsing and remitting multiple sclerosis.

“I stepped out of the laundry block and looked up at the sky. It was filled with beautiful streaky…

It was filled with beautiful…

You know.

Those white things.

What were they called?

For the life of me I couldn’t find the word. White was all I could come up with. I knew they weren’t called white. I knew they had a name. But that word, whatever it was, remained dangerously elusive.

Fluffy?

Bear? No, that wasn’t the right word. I sighed with exasperation. Now I couldn’t remember what bear was. But it was brown. Like a tree trunk?

A quiet horror awakened in me. As I ticked off the possible causes – lack of sleep, dehydration, low blood sugar – I knew it would be none of them. I dreaded to think that it could actually be multiple sclerosis. This dull worry exploded inside me, and a moment later my inner warning lights came on. My vocabulary had shrunk dramatically over the past several years, but I’d never lost a word before. I’d always been able to find another word that worked. If I couldn’t say beer I’d say ale or tinny or cold drink. I had good coping strategies. Even when my cognitive function hit a major low I’d managed. Point in case: I had been coping with my new lack of ability with numbers. After all I could still read words, I could still read numbers. I found a way around the problems.

This was the first time I had looked at something familiar and gone completely blank. Words, knowing how to string them together, writing them, speaking them, crafting them, had always been the one thing I could do well. Writing was my fall-back plan. My secret love. What if I lost my words? I couldn’t bear to think about what my life would look like if that happened.

All week it worsened. I never did remember that word for the white things in the sky, and couldn’t even cheat a little by looking them up in my dictionary because I didn’t have a starting point. I also noticed that things didn’t stick in my brain. After reading and re-reading a fax and still struggling to make sense of it I resorted to a list of short bullet points, summarising as I read each paragraph. The bullet points kept my thoughts in order, and jogged my memory. I was reluctant to ring my doctor back in Brisbane, worried that he’d tell me to leave the Kimberley and come home immediately, from which I’d eventually end up in an aged-care facility with all of the old people who had also lost the ability to think and do for themselves.

I became suddenly, stupidly, enormously insecure. Carefully I observed myself, keeping notes in my journal each day. My cognitive dysfunction became worse when I was tired or stressed, and my best time was from when I woke up until lunch. There was a black hole each afternoon where my brain function was massively retarded, and it picked up a little again after four in the afternoon. I rearranged my day so that my mornings were all about problem solving, writing and math. My afternoons were filing, tidying and simple tasks that didn’t need much brain power. No-one else noticed that anything was wrong. I still managed to work each day and complete my duties. However, no matter what I did, the sudden decline in my mental ability was terrifying.”

 

That terror, that dumb incapacity, that lack of ability to find the right words, to remember the plot or the characters, to hold a train of thought? Those things have plagued me my whole adult life. The last paragraph from my memoir extract? That sums up living with Lyme. That sums up three decades of my life.

Sure, I’ve still written. I’ve compensated. I’ve found ways to get words on the page. But they haven’t always flowed, and as the number of pages increased so did my confusion.

Now, after two years of hard-core drug treatment, and a host of other helpful modalities and herbs, my brain is healing. I am healing. My function is coming back.

At my writers’ boot camp this weekend, words have been pouring out of me. Good ones. Words, that when I read over them later, make me weep.

Because I have found that place again. The one that has been lost to me for thirty years. I can remember plots and characters, I can see where something needs to be edited, and I can reach into that wellspring of ideas and still find my way back from the catacombs.

That’s a handy thing.

After thirty years I have so much to say!

Your take-home on all of this?

Don’t ever give up.

Ever.

Be resilient. Be determined. Trust that you will find a way.

Holding you, and those intentions for you, in my meditations and prayers,

Nicole xx

Image from danhilbert.wordpress.com

Image from danhilbert.wordpress.com