Catching My Breath

Image from ScienceLakes

Image from ScienceLakes

“Breath is the bridge which connects life to consciousness, which unites your body to your thoughts. Whenever your mind becomes scattered, use your breath as the means to take hold of your mind again.” 
~ Thích Nhất Hạnh, The Miracle of Mindfulness: An Introduction to the Practice of Meditation

 

The past few days have been a bumpier ride than I had expected. I’m off my Lyme drugs while I get all my various tests done, and I’d hoped it would be a picnic.

I was wrong.

Some of the symptoms I thought I’d done with came back with a vengeance. The severe pain I endured last week abated, only to be replaced with a different kind of pain.

Meditation. That’s what’s gotten me through. Again. Thank goodness for my daily practice, for that life-saving place of calm and peace.

I know this will all ease eventually, if I just stick with the treatment protocol. In fact, I already feel better than I did a few days ago.

Problem is, I don’t ever get a proper break from Lyme. I can’t take the weekend off from being in my body. This is the poor broken body I’ve been living in for years. I love it, and I’m grateful for it, but sometimes it all gets too much and I wish I could run away and be someone else for a few days, or me, but in another better-working body.

That’s the truth of it.

But we all feel like that sometimes, don’t we?

One thing I know for sure – meditation helps.

Here are a few guided meditations I recorded earlier. Perhaps you might find them helpful for you right now. Follow the post links to access the recordings:

  1. ♥ Guided Meditation for healing Inflammation and Dis-ease
  2. Bee Breath Meditation for reducing stress and opening and healing the Throat Chakra
  3. Tibetan Singing Bowl Healing Meditation
  4. Guided Meditation for Emotional Support

Know that you’re in my thoughts, prayers and daily meditations,

I’m wishing you peace in your heart today.

♥ Nicole xx

And if you want to know more about Lyme, this terrific documentary, Under Our Skin, is a great place to start. It’s movie length, but well worth it. That’s my life, people. That’s my life…

Measuring Progress

“Progress means getting nearer to the place you want to be. And if you have taken a wrong turning, then to go forward does not get you any nearer.
If you are on the wrong road, progress means doing an about-turn and walking back to the right road; and in that case the man who turns back soonest is the most progressive man.” 
~ C.S. Lewis

 

I spent the morning with my Lyme doctor yesterday. It’s been over a year since I embarked on a strict regime of diet, supplements, herbs and industrial quantities of various drug combinations. On top of my pre-existing meditation and alternate therapy practices that have kept me alive and functioning thus far, defying conventional prognosis.

Yesterday was all about evaluating my progress this past year, and determining our next course of action.

I went to my appointment armed with a list of symptoms: those which had improved, those which had worsened, new symptoms and those which have resolved and gone away. My list was only slightly shorter than War and Peace.

Image from Claire in London

Image from Claire in London

So, how did I go?

I can’t actually tell you yet.

I have a fistful of blood work tests that need to be done. I have to pee in a jar and poop in a cup.

I have to make appointments for a brain MRI, ultrasounds and scans of various organs and body parts. There is every kind of test for my heart.

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And in the meantime I shall be drug and herb free. Two glorious weeks without this punishing regime of horrors. I feel like a kid at the beginning of summer vacation, with all those beautiful clear days stretched out ahead of me.

Once my results are in, we’ll formulate a new treatment plan, my doctors, alternate therapy practitioners and I.

I am looking forward to comparing where I am now with the results of previous tests and scans. I am hoping for good progress.

In the past thirty years, while I have dealt with declining health, often the only way to evaluate my progress or response to various healing agents was how I felt. I know lots of people who use that technique for evaluating their progress with Lyme treatments. And I think that is valid to some extent. If you feel better, you must BE better, right? And if you feel worse…

Truth is, I have felt WORSE, sometimes much worse, over the course of the previous year, as I have knuckled down and followed this healing path.

And I have had many times in my life where I have experienced a lessening of symptoms, or an upward swing for a while. When you live with chronic illness any kind of better day or improvement in energy and function, even if that improvement is marginal, seems like a really BIG thing.

But until last year, few of my improvements have ever lasted. And scientific evaluation of my condition over time, using evidence based medicine, prove that prior to 2013 I continued to deteriorate. Although, in my defense, I have stubbornly refused to die, even if that was my expected trajectory! :)

So, I welcome this next barrage of tests. I welcome being able to use the best that science and modern medicine can give me. I want to be able to critically evaluate what’s working, what isn’t, and working out from there where we go next. Yes, I am the psychic who embraces quantifiable results and proof of change!

I am hoping for measurable improvement. I’ll keep you posted as to how I go.

Image from Chronicles of Illusions

Image from Chronicles of Illusions

PS :) Thank you to everyone who has contacted me with advice and suggestions.   Some of your ideas and treatments have been happily embraced by myself and my very open-minded doctors. An especially big thank you to all the lymies who have given me tips on coping with herxing or who have suggested alternate therapies, herbs, essential oils and so on to compliment my current drug regime.

Thank you to my friends and readers. Your healing energies, prayers, letters and words of encouragement have meant the world to me, and have kept me going through the darkest of times.

 

And for all if the people who have contacted me with suggestions about changing my obviously-flawed thinking which caused my disease (Dude, get with the 21st century – they are actually called pathogens and you can see them under a microscope!) , repenting of sins, God’s cursing of psychics, past life regressions as THE definitive treatment, multi-level marketing product miracle cures accompanied by pages of written testimonials about people feeling better, and stories of people who have cured their Lyme disease with a crystal, drinking their own urine (I went there already and it didn’t work!) thirty-day water fast (tried that too), psychic surgery,  amazing technological device or  a simple solution of bi-carb soda or other common household product, thank you. I’m always opening to expanding my knowledge and trying new things. However… If you can claim a cause or cure, I would appreciate your evidence and long-term results to back this up.

A Short Walk

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“Many people nowadays live in a series of interiors…disconnected from each other. On foot everything stays connected, for while walking one occupies the spaces between those interiors in the same way one occupies those interiors. One lives in the whole world rather than in interiors built up against it.”
~ Rebecca Solnit, Wanderlust: A History of Walking

 

I’ve been cooped up for days, and yesterday afternoon I just needed to be outside. I’m not up for walking far right now. One of the meds I’m on for my lyme treatment has a potential side effect of stiffening ligaments and tendons, giving them increased risk of tear or rupture. Getting into bed last week I did my knee. As I lifted it off the floor I heard it go pop, pop, pop like a zipper unzipping, and the next thing I knew my knee hurt A LOT, and then of course it swelled. Off to the awesome physiotherapist (Thanks Simone!) next morning and then my knee had to be iced, elevated, strapped and rested.

On top of everything else…

But isn’t that always the way? :)

Yesterday I took a short stroll (hobble actually) around my front yard. Just to breathe the air, fresh from rain. Just to feel the sun on my skin. To put my face against the bark of a tree.

I stood outside and drew some breaths deep into my body. It made me feel better.

Maybe a short stroll might help you too.

Here’s my walk, in pictures…

Lilies in the cattle trough.

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Orchids flourishing in a crevice of the fig tree.

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Gazing up through the branches of the fig tree, my face pressed to its cool bark.

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Blue sky peeking through the clouds.

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The Hoop Pine in our front yard. Just beyond the fence is the eucalypt glade where Mr Grunty, the big male koala hangs out.

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Late afternoon view down to our front gate.2014-03-31 17.26.03Thanks for coming with me on my little stroll.

Much love to you, Nicole xx

 

The Power of Story

Image by Kathy Fornal

Image by Kathy Fornal

“After nourishment, shelter and companionship, stories are the thing we need most in the world.” 
~ Philip Pullman

 

The past few days have been rough for me. It’s a lyme thing. Partly because of the pathogens that have invaded and taken up residence in my body and partly because of the ongoing treatment to evict them.

I’ve been in excruciating pain. Pain that sets my face into hard lines during the day. Pain that has me whimpering, crying and howling in agony each night. The pain has been slowly escalating over the past few weeks, and now, at its crescendo, my bedroom is no longer a refuge. Nights no longer bracket my days with healing sleep. Instead I descend the stairs into a fiery hell.

I keep everyone awake; my husband, the dogs… even when they sleep in the guest room. My muffled sobs and screams are difficult for them to hear. They find it hard to settle, and they want to be near me, as much as I keep sending them away.

The night before last Ben stole back to our room and held my hand as I struggled. Nothing was helping.

Finally, he began to tell me a story. A story about a little girl who wakes up in a big old house in the middle of the night. She is wide awake and the rest of the house is fast asleep.

She takes her small suitcase and goes to the kitchen, where she packs a few snacks.

Image from Pickcute

Image from Pickcute

“What are the snacks?” I ask.

“Two small square sandwiches, four biscuits and a pot of jam.”

In my head I see each of these things. I wonder about the size of the sandwiches. I wonder about many things. It prompts another question. “What kind of jam?”

“Strawberry.” He strokes my hair tenderly and goes on with the story.

The little girl opens the big front door and heads off into the moonlight.

Soon she comes to a pink forest. All the trees are pink. Their trunks are like glass, lit from within so that they create a soft pink glow. Their leaves are every other shade of pink.

As Ben is creating this imaginary world I am still convulsing and writhing in pain. Tears are streaming down my face. But my mind is no longer so distressed because I am now the little girl wandering alone through this glorious pink forest while the rest of the world sleeps.

Some time in the early morning, I fall asleep for a few merciful hours. And when I wake up my head is still filled with pictures of this night-time escapade.

Over a cup of afternoon tea I ask Ben something that I have been pondering all day. “What is the ground in the pink forest made out of? Is it grass? Or dirt? Or snow? Or something else?”

“I’m sorry,” he says, smiling. “I can only tell this story at night. You’ll have to ask me then.”

Finally, amid all of this current misery, something to look forward to. My beautiful husband is helping me reclaim my nights instead of fearing them.

Image from HDWallIMG

Image from HDWallIMG

 

Saying No to Conditional Love

live-life-quotes-love-quotes-short-inspirational-quotes-inspiring-quotes-inspirational-quotes-inspiring-quotes

“You can be the most beautiful person in the world and everybody sees light and rainbows when they look at you, but if you yourself don’t know it, all of that doesn’t even matter. Every second that you spend on doubting your worth, every moment that you use to criticize yourself; is a second of your life wasted, is a moment of your life thrown away. It’s not like you have forever, so don’t waste any of your seconds, don’t throw even one of your moments away.” 
~ C. JoyBell C.

*Warning: Swear alert. Swears ahead.

I did something quite out of character for me yesterday.

There is someone who has been an important relationship in my life for a long time. You know the kind of relationships you just expect to endure, and to stay strong and connected. This person knew me, loved me, and was proud of me back when I was well and riding the crest of a wave of successes in my personal and business life.

The life I like to think of as my ‘former’ life. The one pre-illness. The one pre-psychic awakening.

The life I live now embarrasses the hell out of this other person. It has made things uncomfortable and awkward between us, without any kind of touchstone where we can easily connect, no matter how hard I try.

But in truth, we’ve been grown apart for a very long time, and so much of my championing and nursing along of the relationship comes from a sense of duty as much as from a place of love.

We speak intermittently. It’s been months now. I do my best to keep them in the loop of my life, so they were aware that I have been unwell. That I’m still unwell. When they called my home yesterday, Ben answered the phone because I was outside with my head in the toilet, violently ill from my lyme meds. He let the person know that I’d be a few minutes. He was politely honest about my situation.

Still, in keeping with the way this relationship has headed, the person did not ask after Ben, or me, or the farm. They talked instead of their latest achievements, and the achievements of others in their family.

When I was finally able to take the phone, this person did not ask after my health, not even in the polite way we all do where we don’t really need to hear the answer but we do want to observe social graces.

They just wanted to know what was happening with my career. Was I published yet? Why was everything taking so long? What was the hold up?

All I could do was stumble around saying that these last two years hadn’t been my finest (for those of you who don’t know, I was dying from unresponsive congestive heart failure, and then received a diagnosis of lyme disease where the treatment is saving my life but in the process making me endure the seven circles of hell) as this person insistently reminded me of who I used to be, and what I used to do. The life I had no choice but to walk away from.

For a moment I felt like one of life’s greatest losers. The shame was overwhelming. I felt so small.

Image from Midlife Rebel

Image from Midlife Rebel

I’ve been raised to be polite. But something happened yesterday. I got angry. And in that space of anger I also felt a need to put a stop to this.

“Fuck off!” I said gruffly. And then I hung up.

I shocked even myself.

But now, with some time and space between me and the big ‘hang up’, I’m feeling better about things. Cleaner.

Truth is, I still love them.

And I see the insecurity in THEM. The need for me, as part of their life, to be someone who others will judge well, and so judge this person well too.

But allowing them to heap shit upon me is not an act of self-love. Perhaps you remember that back at the end of 2013 I ran a retreat where all of us made a sacred vow - to love and treat ourselves well in 2014, to put ourselves and our needs front and centre in our lives rather than always playing second fiddle to everyone else.

I’m living that vow, and it is radically changing my world. In the best of ways.

It really is okay to say NO to conditional love. I hope that in sharing this experience, you can embrace that truth too.

Much love to you, Nicole xx

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Lessons on Waiting and Being Delayed

Image from ASCRS Eyeworld

Image from ASCRS Eyeworld

“How did it get so late so soon?” 
~ Dr. Seuss

“If we can just let go and trust that things will work out they way they’re supposed to, without trying to control the outcome, then we can begin to enjoy the moment more fully. The joy of the freedom it brings becomes more pleasurable than the experience itself.”
~ Goldie Hawn

I spent a lot of time waiting in doctors’ rooms yesterday. In fact, over the last thirty years I’ve spent an enormous amount of time waiting. Waiting for doctors, waiting for tests, waiting for results, waiting for second opinions.

In the beginning waiting used to frustrate me. Doctors always seem to run late. There’s inevitably a big queue at the pathologist’s early in the morning when you’re on fasting bloods. Simple procedures often take far more time than you’d expected. Have you noticed that?

Back when I lived a very measured and time-poor life, scheduled down to the last-minute, this kind of waiting nearly drove me crazy. Why couldn’t these people be more efficient?

I’ll tell you why.

People and bodies are complex by design, and things don’t always run to plan.

Yesterday I was up early to be one of the first through the door for blood tests at 6am…

My first doctors meeting is at 9am and I have a string of appointments after that, all scheduled a few hours apart. I plan to get quite a lot done during the ‘in-between’ appointments time.

After breakfast I arrive at the surgery early to fill in paperwork. And then I wait. So early in the day I’m not expecting much of a delay. It’s a busy practice with several doctors, and the waiting room is already full.

One by one each person’s name is called. New people arrive. Others come and go. 9am rolls by, then 9.15 then 9.30. I still haven’t been called. After a while a woman sits near me, and she and I stay sitting as more names are called. I’ve been waiting over an hour now, and the woman beside me half that time. She begins looking pointedly at her watch, sighing and making it apparent that she’s not happy. I keep reading my book.

After an hour the woman loses it. “What’s the delay?” she shouts angrily. “My appointment was an hour ago.” She lets it rip at the receptionist. Still yelling abuse she storms out of the practice as an elderly couple emerge from a consulting room, red-eyed and obviously upset. They look lost as they stand at the front desk.

A minute later my doctor calls my name.

He’s reserved today, not his usual self. “Sorry about the delay,” he says. He seems quite sad.

I can’t help myself. “Are you okay?” I ask, placing my hand on his arm.

My lovely doctor is taken aback. Tears prick his eyes. “Yes,” he says in the softest of voices. “Yes, I’m fine.” With great professionalism he brings the focus back to me, the weight of whatever happened earlier sitting heavy in the air between us.

Things go well for me, and I’m out the door in under fifteen minutes.

Luckily I’d made my medical appointments with plenty of time in between them. I can deal with the delay with a little juggling. I cancel some plans. And my day works out just fine. Better than fine in fact. For some reason we end up getting ‘rock-star’ car parks right out front everywhere else we go. The day slides by so smoothly. Nothing at all is a hassle. It’s like being late early in the day somehow saves us all this time later on.

Last night as I sat in meditation I thought of that elderly couple, and said a little prayer for them, and for my doctors, nurses and all those who work in the health care industries. It’s a big job, at times a very hard and thankless job. People and bodies are complex by design. Things don’t always go to plan.

I spent a lot of time waiting yesterday because someone needed more of my doctor’s time. And whenever you need more time it’s not a good thing. Positive news is always fast. The other kind usually takes longer.

How could I mind someone needing more time? How can a doctor or other medical professional possibly determine in advance who might need that extra attention?

I have been on the other side of this too. A few years ago a young technician was performing an ultrasound on my abdomen. She took forever, and went from being chatty to very, very quiet. Eventually she left me there, and after a fraught ten minutes brought back a colleague. They both huddled over the screen and then the senior technician repeated my procedure. Neither would tell me what was going on. My fifteen minute procedure took ninety minutes, interspersed with phone calls back to my doctor. I was the person emerging into a waiting room of cranky patients being held up because of me.

I have been given my share of bad news. I have cried in car parks or sat stunned and silent afterwards in coffee shops near medical specialists’ rooms. I have been the reason for everyone else being delayed and inconvenienced.

Yesterday I was thankful that it was not me needing more time. And I was also grateful that others could have the time they needed.

It might not be a doctor’s surgery.You might end up waiting in the office of a counsellor, a tax accountant, a veterinarian, a dentist, a skin cancer specialist. The thing is, you’ll be waiting because someone needed more time.

If that was you, if you needed more time, you’d want the person helping you to care enough to be very present for you. To do all that they could to explain and work on your problems. You’d want to feel supported. You wouldn’t want to be just a number being churned through the mill.

So, if you find yourself waiting, know that it might be inconvenient, but it’s not the worst of things. It shows that whomever you’re waiting for cares about doing their job well. They care about looking after their clients or patients. And that means they’ll extend that same care to you.

Go well in the world today. I’m thinking of you and sending love.

Nicole xx

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Morning Rewards

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“As long as there was coffee in the world, how bad could things be?”  ~ Cassandra Clare, City of Ashes

It’s still early. But already I’ve meditated. I’ve taken my morning ‘before food’ drugs. I’ve fasted and I’ve given vial upon vial of my blood to be tested for positive signs of health progress.

It’s time for a little reward. A well made latte.

I shall sit here on this golden morning and sip my coffee, savouring the aroma and flavour.

Then a day for me of doctors, specialists and various things of a medical nature.

But that’s later.

All that matters right now is that the morning is beautiful, and my coffee? Sublime!

I hope that in the day ahead you too find a few peaceful moments for yourself, a little time to nurture, nourish and just BE.

Much love to you, Nicole :) xoxo

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Image from Heidi Lamberton

Image from Heidi Lamberton

Lucky Dip #2

“One good thing about music, when it hits you, you feel no pain.” 
~ Bob Marley

 

It’s one of those ‘not coping very well’ kind of days. I’ve been enduring nights of no sleep, constant pain, fevers, sweats and anxiety. But that’s okay. It’s all for a good cause. And I’m prepared for days like these.

This morning I reached into my bag of Love Letters to Myself and got this:

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Perfect. Music is one of those powerfully magically soul soothers.

And so’s the message on the back of the card…

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You know, those messages might just work for you too. And you’re welcome to my choice of songs! Here’s my Playlist:

Don’t Give Up – Peter Gabrielle and Kate Bush

Running Up That Hill – Kate Bush

Cloudbusting – Kate Bush

and we’ll end on an ‘up’ note with

Walking on Sunshine – Katrina and the Waves

Wishing you magic, music and miracles in your day today, Nicole xx

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

Love Letters to Myself…

Image by Dinah Corley

Image by Dinah Corley

“Be the one who nurtures and builds. Be the one who has an understanding and a forgiving heart one who looks for the best in people. Leave people better than you found them.” 
~ Marvin J. Ashton

So today I begin the next round of drugs that are making me well. Problem is, in taking these drugs they are also going to make me sicker first.

It’s not just the physical symptoms either. The relentless high level pain, nausea, fevers and chills are something I’m getting better at dealing with.

Besides the pain, the worst part is that horrible space of insomnia, brutal depression, social isolation, abject misery and anxiety. That’s not a normal part of my psyche. Most of it is actually a documented side-effect of the drugs, and of the bacteria that have invaded my body. But it doesn’t matter WHY I feel it, the fact is it’s likely to be part of the scenery for the road I’m about to travel.

That’s why I spent a little time yesterday making preparations for the days ahead. I’m not being negative. Having walked this road before I know what to expect. Perhaps I’ll be fortunate and NONE of this will happen in Round Two. But if it does, I’m ready.

Image from WAH

Image from WAH

I have recorded myself some meditations and ‘bedtime stories’ full of gentle encouragements, relaxation and pain minimisation techniques, sleep inducers and reminders of who I am and what’s important to me for those moments when I’ll struggle to get into the right headspace.

I’ve been meditating for over thirty years, and I still have times where getting into a peaceful space eludes me. No point in forcing that. I need to make these next few weeks as easy for myself as possible. When things get tough I can listen to one of my guided meditations!

I also wrote myself a few little love letters, wrapped up some of our feel-good DVDs and CDs that never fail but make me smile, and filled a couple of postcards with coping strategies. Because let’s face it – who remembers this stuff when you’re down in the hole? I now have a box of letters and presents that I can ‘Lucky Dip’ into, trusting that I’ll pull out exactly what I need when the going gets tough and I need some extra support.

Maybe I’ll share some of these over the next six weeks. Perhaps you might find them useful too, if you ever feel the need to wrap yourself in a blanket of love. If it sounds like a good idea let me know and I’d be happy to do that for you.

Okay. Let the count-down to the other side of this ordeal begin!

5 weeks, six and a half days to go…