Two Steps Forward…

 

2014-07-21 09.45.26

“Progress, of the best kind, is comparatively slow. Great results cannot be achieved at once; and we must be satisfied to advance in life as we walk, step by step.” ~ Samuel Smiles

 

It’s been a frustrating few days for me.

I’ve recently changed Lyme doctors, and begun a new regime of drugs and herbs for my Lyme and co-infections. I’m filled with optimism for my return to health, and although I’m tired it had all been going well until the tail end of Monday.

I’d taken the first dose of a new drug that morning, and been fine.

But suddenly on late Monday afternoon my speech began to slur, words vanished from my brain, my eyes blurred until I could not see at all, I walked like a drunk woman and I forgot how to do the simplest tasks, like cleaning my teeth. My night was filled with hallucinations. I was sure that lizards (Lizards? Oh, Nicole!) were hiding in the bedclothes and coming out to bite me when the lights were out. Of course there were no lizards, just the sting in my nerves and skin from the herxing as the bacteria within me died and flooded my body with their nasty neurotoxins.

A little bit scary, but also a familiar road. This happened last time I took this particular medication too. But this time my reaction has been less severe, my pain less too.

All my symptoms are finally settling down again, but it’s a good reminder that with Lyme treatment it’s so often two steps forward, one step back.

And you know, two steps forward one step back is STILL one step forward when you do the math. :)

PS – Don’t you love that photo of Bert? He looks how I feel!

Image from Inspirably

Image from Inspirably

Lyme and Making Plans

“She had learned the lesson of renunciation and was as familiar with the wreck of each day’s wishes as with the diurnal setting of the sun.” 
~ Thomas Hardy, The Mayor of Casterbridge

“Success is when everything that goes wrong, fits in your plan.” 
~ Gary Rudz

 

When I was diagnosed, finally, with Lyme disease, back in January 2013, we did a lot of shuffling of plans. A much-looked-forward-to holiday was called off. I cancelled workshops and retreats. My clever PA began adding a footnote to each appointment she made for me, letting people know that I was being treated for Lyme and that I may need to reschedule their session at short notice, depending upon my health on the day.

I’ve had to do a lot of that anyway, in my adult life. Cancel things. Say no. Pull out at the last minute. Always because of unreliable health. Too often that has made me the unreliable friend, family member, or neighbour. The only area I have managed to be mostly reliable has been work. But doing that has meant creating a business where I can work from home, part-time, and where everything else suffers so that I can get that work done.

Sure I’ve gone ahead sometimes and done the thing, but too often afterwards I’ve paid the price. An afternoon of socialising might mean three days of crippling exhaustion. A few hours of gardening could leave me flat out for the rest of the week.

“Gee Nicole,” a friend said once, frustrated at my lack of energy, “we all get tired.” Yes, we do. But Lyme tired is something else. Lyme tired is truly chronic fatigue. Lyme tired is neurological fatigue, as well as physical. It’s the kind of tired where after just a few hours work I am in bed by seven and asleep by ten past. And that’s on a good day. :) Lyme tired is the kind of tired where I can struggle with basic daily living – like showering and dressing, holding a conversation, preparing a meal or attending to the simplest kinds of housework. The kind of tired where my arm stops working, or my eye starts twitching, or my brain goes on strike.

My exhaustion is an ocean, under the influence of some great unseen force. Sometimes it recedes, leaving a gleaming bright shore of possibility. I get stretches where I can do so much more, and I settle in to that as my new normal. But then the tide comes back, and I find myself with a smaller and smaller window of available time where my brain works, or my body works and I can get things done.

To be honest, I’d hoped that this far into my Lyme treatment, an aggressive protocol of drugs and herbs, that I would have been back to much more glorious planning again by now. That I would be saying ‘yes’ more often, and ‘no’ much less.

But as I’ve travelled this road I’ve come to realise that there’s still so far to go. I might be in this hazy half-life place for a while yet.

So, I’ve gotten smarter.

Now I make plans EXPECTING to be tired. I create my business around what I can do on a bad day, or an average week, rather than what I might be able to do if I had a sudden upsurge in energy or was miraculously well again. I plan socialising around my best times (mornings), or for early nights.

I am planning my whole future around having a flat battery.

It’s not pessimistic. I fully intend to get back to well. Or as well as it is possible to be, for me. But oh how it takes the pressure off, knowing that I am catering for low energy, or sudden patches of incapacity.

Anyway, my heart is on the way to being completely normal, and I have my brain back. There is no longer an imminent threat of dying. I can write and think and dream again. And I’ve always been able to do psychic work – no matter how ill I’ve been. That’s a gift that comes through me, and it’s never influenced by my health. In fact, it has often been the thing which has energised me and kept me going during my darker days. So, planning is possible. As long as my plans make space for down-time, disaster and the unexpected.

I even changed my whole business model, so that I can run an ever-expanding enterprise from bed, on a few average health days a week. Imagine how much lovely free time that will give me as I move back towards well. Imagine how much writing I will be able to get done. How much living. That’s exciting for me!

Maybe you don’t have lyme, or some other kind of incapacitating situation in your life, but I can guarantee you that making plans based on reduced energy and reduced input isn’t a bad thing. Instead it’s a plan for life that makes room for life. It’s about designing a life where there is space for you to grow, to heal, to love, to change your mind, to move in new directions, to spend the afternoon napping, or with your lover, or catching a series of perfect waves.

I’m all for planning. Planning moves us purposefully in a direction of our choosing. It enables us to be effective with the use of our time and resources. It helps us to actively design our lives.

But I am also for living honestly, and being realistic about what’s on our plates. I am also for being kind to ourselves. I am all for making room to breathe rather than heaping responsibility, duty and endless tasks upon us.

What kind of plans have you made in your life?

Have you crammed so much in that there is no room for downtime, rest or fun?

Lyme has proved to be a wise teacher for me. I hope that by sharing my story, it also helps you to be kinder to yourself, to be more trusting of the process of life, to focus on your most important priorities and still leave space.

All sorts of miracles and wonderments can happen when we leave enough space for them. It’s not up to us to have to fill in all the blanks. Where would be the magic in that?

Much love to you, Nicole xx

Life-is-a-miracle

 

Nurture in cups and bowls

Pumpkin soup

“I think that women just have a primeval instinct to make soup, which they will try to foist on anybody who looks like a likely candidate.”Dylan Moran

 

It’s been a hard two weeks for me. Meds issues. Doctor issues. Mobility and pain issues. Crushing insomnia. Nausea. And a myriad other bothersome things. Ah, the joys of Lyme disease and all that entails… It’s like my body decided to rifle through the junk drawer and bring out all the remnants of crap I thought I’d dealt with by now.

I’m back to two finger typing again, so that means blogging is back on my agenda!

Thankfully I am home at my farm, and it’s a farm with a freezer full of kindness I had made as gifts for other people. All things my husband has been able to defrost and reheat for me:

Pumpkin Soup (That’s it in the photo above!)

Chicken Soup

chicken soup

Bone Broth made into easy meals with noodles and vegetables

bone broth soup

Spaghetti Bolognese

spaghetti-1

Lemony Slow Cooked Lamb Shanks with some mashed potato and vegetables from the garden

lamb shanks lemon

Nana’s curried sausages, made with homemade stock

curried sausages

Easy Thai Chicken Soup

thai chicken soup

I’ve also enjoyed a few meals of simple but delicious Soft Boiled Eggs and Toast Soldiers, which Ben has made his own signature dish. (Eat your heart out, Master Chef!)

soft boiled egg and soldiers

If friends and neighbours have come round for a cup of tea we could still offer them some tasty Easy Date Loaf or a piece of Moist Boiled Fruitcake as I had both of these in the freezer as well.

scones-and-fruitcake

By the time I’m back on my feet I think I’ll have eaten everything I’d put by, but gee I’m glad  took the time to do that cooking. Ben’s a wonderful husband, but let’s just say that cooking’s not his greatest strength! :) We’ve both been grateful for all of those frozen and easy-to-put-together meals.

Maybe there’s a recipe here that you might find useful too – either to make for yourself, or to take to a friend or family member who could use a little extra kindness and support right now.

Lastly I’ve been enjoying a little Warm Spiced Turmeric Milk made fresh each night to help me sleep and to kill more Lyme bugs. I heartily recommend it!

turmeric milk

I have missed you all very much, but I’ve held you in my daily prayers and meditations, so we’ve not been that far apart from each other.

I’ll record you a guided meditation today too, as I have a couple to catch up on, so watch out for that on the blog tomorrow. Lots and lots of love, Nicole xx

A Quick Update On Me!

Image from Modern Kiddo

Image from Modern Kiddo

“To conquer frustration, one must remain intensely focused on the outcome, not the obstacles.” 
― T.F. Hodge

“A bruise is a lesson… and each lesson makes us better.” 
― George R.R. Martin, A Game of Thrones

“The lotus is the most beautiful flower, whose petals open one by one. But it will only grow in the mud. In order to grow and gain wisdom, first you must have the mud — the obstacles of life and its suffering. … The mud speaks of the common ground that humans share, no matter what our stations in life. … Whether we have it all or we have nothing, we are all faced with the same obstacles: sadness, loss, illness, dying and death. If we are to strive as human beings to gain more wisdom, more kindness and more compassion, we must have the intention to grow as a lotus and open each petal one by one. ” 
― Goldie Hawn

 

Hi Lovelies, I thought I’d better update you on why I’ve been so quiet…

One of the drugs I’ve been on for my Lyme treatment has an unfortunate side effect in some people of shortening and stiffening ligaments and tendons. As they lose their elasticity they become prone to tears and rupture.

A few weeks ago I tore ligaments in my right knee as I was getting into bed. It’s healing, slowly, but it has certainly slowed me down. Then on Monday night after I came home from my Lyme Doctor I had a tear and a bleed in my left Achilles tendon caused by Harry the dog bumping into me.

Rolling over in bed a few nights later I ripped ligaments in my right shoulder and injured tendons in my right thumb.

I would not be lying to say that right now I’m feeling a little over it. :( If I were really truthful, I might even admit to having indulged in a full-on howly little emotional breakdown for a minute or two.

So for now I am on bed rest, being well looked after, and trying not to injure myself further until these drugs get out of my system.

I’m also not having such a fun time on the new ligament-friendly lyme meds I’m on either (think vomiting, pain, blurred vision and misery) although that’s a whole other story…

But on an up note I AM getting better. It’s just a lesson in patience right now, like typing this blog with my left hand so at least it’s done, even if it is a very slow process.

This morning my mum rang, and gently suggested I should try and blog something, anything, just to let you all know that I am okay.

I am mostly okay. :) Really.

Forgive me if my blogging remains a bit erratic until I get my body under control. We’re working on it, but like most things, it shall take time. Still, I’m already feeling a bit brighter. Fingers crossed this uphill trend shall continue. I’ll post as I can, so stay tuned.

Thinking of you and sending love, Nicole xx

PS – here’s a useful little quote for times like these:

o-INSPIRATIONAL-QUOTES-facebook

Slowly Slowly Better…

Image from Mental Floss

Image from Mental Floss

“I saved a man’s life once,” said Granny. “Special medicine, twice a day. Boiled water with a bit of berry juice in it. Told him I’d bought it from the dwarves. That’s the biggest part of doct’rin, really. Most people’ll get over most things if they put their minds to it, you just have to give them an interest.” 
~ Terry Pratchett, Equal Rites

“Though the doctors treated him, let his blood, and gave him medications to drink, he nevertheless recovered.” 
~ Leo Tolstoy, War and Peace

 

I’m off to see my Lyme Doctor today. Another date to tick off my calendar, another date to record my progress, update my meds and share my journey with a physician who truly cares.

Slowly, slowly I feel like I am being returned to myself. I’ve made a few short solo trips this past week, driving myself in the car. That’s a major breakthrough. I’ve begun a slow return to work. I’m having fewer terrible days, and more stretches of consistent energy. I’m writing. A lot. And that’s the most exciting thing of all.

There’s still a long way to go, and I’m still exhausted easily and often, but oh, how hopeful I am that this slow journey will take me back to the flow of life, where I can be fully immersed instead of simply cheering from the sideline.

I’ll keep you posted on my progress. Thanks again for your love and support, and for being here with me through all of this. Much love, Nicole xx

 

Update from Lyme Land

Image from Norway Street

Image from Norway Street

“Every day you may make progress. Every step may be fruitful. Yet there will stretch out before you an ever-lengthening, ever-ascending, ever-improving path. You know you will never get to the end of the journey. But this, so far from discouraging, only adds to the joy and glory of the climb.”
~ Winston Churchill

 

It’s been eighteen months since my Lyme diagnosis, and fourteen months since I began treatment with an intensive regime of antibiotics and specifically targeted herbs.

On top of all of the other good things I was already doing that had sustained my life, but not healed me.

For those of you who’ve been following my journey, you’ll know it’s been a long and tough road. And I still have a long way to go. Perhaps another two years of treatment yet. Maybe more.

But truly, I can FEEL the progress I’m making now. Little by little I am beginning to reclaim my life. I am having, on balance, more good days than bad. The bad days are bad, but not nightmarishly so. I can cope with them.

I am still suffering pain, and insomnia. I still suffer from periods of intense fatigue. I have days where I can barely lift my head from the pillow and the night brings only more pain and no relief. But on a good day I have a sense of returning strength. My brain works – almost all the time. I have the energy to do a little housework, to do a little gardening – and not be completely wrecked afterwards.

I’m writing. And writing. And writing.

I am beginning to think in possibilities. There is once again room in my life for dreams.

Above all, I want to say thank you. For sticking with me. For sending me messages of support. For helping me hang in there when I truly didn’t think I could go another step.

I have no idea what ‘well’ will ultimately look like for me, but I’m excited to have the chance to find out.

Much love to you, Nicole xoxo

PS: I love the wisdom of the quote below:

When-things-fall-apart-consider-the

Inviting Help into Your Life

Showing the way

“I do believe in an everyday sort of magic — the inexplicable connectedness we sometimes experience with places, people, works of art and the like; the eerie appropriateness of moments of synchronicity; the whispered voice, the hidden presence, when we think we’re alone.”
~ Charles de Lint

 

Divine Guidance.  Signs. Help.  Answers to prayers.  Last-minute reprieves. Dramatic turn-arounds. Miracles. Most of us have asked for them at one time or another, but are we actually heard?  Can we really reach out like that and expect things to change?

I believe that the answer is yes. But it is useful to understand the process.  Our job is not only to ask. (I’ve written about that process here: Asking for a Sign) Our job is also to be receptive to answers, no matter what they look like, or how they come to us. Our job is to ACT on those answers and synchronicities. Our job is to know that we need to trust in Divine Timing. Especially when what’s happening in our lives is not going to OUR timing – the timing we want for ourselves and our plans and dreams.

Let me explain…

Back in November 2012,I stood on a moonlit beach in Thailand thinking of a particular set of circumstances in my life. My beloved Nana had just died, and I would not make it home for her funeral. And earlier that day, when I still suffered from congestive heart failure, I’d been crippled with severe chest pain. The pain had gone, but it had left me frightened and bemused. Once again I’d hit a wall with my health, and no matter what I’d tried (and the list was exhaustive) nothing was working. I realised I had reached my limit. No matter what I did, I was dragging myself through life, not enjoying it at all, but trying my best. For my husband. For my friends. For my clients. Every day was a struggle. And every day I was getting worse. Again.

I missed my Nana. I felt like more of my cheer squad was now in heaven than down here on earth.

My deteriorating health was impacting my marriage, my work, my very ability to draw breath. I knew in my heart I couldn’t go on like this. I didn’t have it in me any more. I’d found the end of the line. I stood there on that beach, oblivious to the beauty, with tears streaming down my face and I said, “Do you know what, God? I just can’t do this anymore. I’m done.”

I was ready to go home.

Image by Richard James

Image by Richard James

I meant it.  I said what was in my heart.  There was no neediness. No wanting or hoping. So it wasn’t really a prayer, or even a request for help.  I just said it how it was.  A definitive statement without expectation. I was squared away with dying. In fact, I fully expected that death was where I was heading. I was okay with that, sad as I would be to leave my husband. I was so very tired. I had no fight left in the tank. I really was done. I turned on my heel, went back to our room, and then forgot all about this seemingly one-sided conversation in the days ahead.

Less than a week later, I bumped into a friend in Bangkok who told me that she’d been having thyroid problems.  She mentioned that it could sometimes cause chest pain.

We talked some more…

Oh, she said. You need desiccated pig thyroid, not that other stuff you’re on. There aren’t too many doctors back in Australia who prescribe it, but there’s one in Brisbane. And she gave me his name.

A few days later I was back in Brisbane, and I called that number. By some miracle I ended up with an immediate appointment with a doctor who usually took a year to see. In fact, I’d tried to see him three times during the past ten years and been unable to get an appointment at all. But he was in his office, it was a Friday afternoon, his secretary had gone home with the flu, and he’d just had his last appointment of the day cancel. Could I come in straight away?

I could, and I did.

Before I saw him I had to fill in a very long and exacting health history. Standard procedure for doctors who think outside the square.

I wrote it all down. All thirty years of it. Something I hadn’t bothered to do for a long time.

He called my name and I went into his office.

I looked around at the pictures and the box of toys on the floor while he read my history. It took a very long time.

Finally, he looked up.

“This is textbook Lyme Disease,” he said. “Ever been tested for it?”

I’d never even heard of it.

He gave me forms so I could send off some blood samples, and that was the day I began to get my life back.

He was right. I did have Lyme Disease. I told my sister. She stumbled upon some information concerning another doctor who was about to open a new clinic, specifically treating this illness. I was one of the first patients to be seen.

These two physicians changed the course of my trajectory forever.

Now I am healing.

One day I fully expect to be well, whatever that may look like.

Why am I telling you this?

Because I know that somewhere, right now, someone is reading this who needs to know that they are not alone. That our thoughts and prayers are heard. That answers sometimes come from left field, and in manners that we could never have imagined.

Sometimes we need to ask for help. Sometimes we need to surrender.

And it usually doesn’t happen in the timing we’d hoped for.

But…

…wherever you are at, know that miracles are possible.

Change is possible.

Help is possible.

Healing is possible.

And you are worthy of all these things.

Sending you much love, and holding a candle for you in my heart, Nicole xx

Image from Vastu Chai

Image from Vastu Chai

Me and That Owl

Clothes line owl

“Turn your wounds into wisdom.” 
Oprah Winfrey

“The unexamined life is not worth living.” 
Socrates

 

Last Monday, in my Doctor’s rooms, I received the best kind of news. Although I am still unwell, I have definitely turned the corner in my struggle against Lyme disease. I am no longer dying. I am healing. My life is once again unfurling a sense of possibility.

On Tuesday we came home from the city to our little farm. That night I stood in my backyard and communed with an Owl. An hour earlier my computer had locked me out, and my other one had powered down, unable to be recharged. I couldn’t blog. I couldn’t write. I couldn’t work. I couldn’t be all ‘business as usual’. I managed to get one last message to you. I’m taking time out, I said. In my head were visions of relaxing, laughing, sleeping, a little crying, and complete replenishment.

This is what really happened…

As I stood outside with the Owl, I felt as if somewhere upstairs God, or at least someone with a plan, slammed shut another door in my life, leaving me standing in an empty corridor.

Behind me were all the doors I could have taken, and all the doors I thought I should have taken.

Behind me were all the doors that will never open for me again.

For a moment I felt peace. Relief flooded over me. Not dying. Healing.

And then, and I must be honest here, I was consumed by panic. I looked behind me at all those closed doors.

Oh, I knew that wasn’t the best of plans. But I couldn’t help myself. Even if I hadn’t turned I could feel them. The weight of them. The sound and space of them.

What should I do? Where should I go? Was it too late? Could I rush back down that corridor into the dark and salvage a few things?

How was I meant to do this next bit? What was my life meant to look like?

I couldn’t see any open doors in front of me.

Image from Frontview

Image from Frontview

The Owl on my clothesline hooted, getting my attention and pulling me out of the maze of my mind.

What should I do? I asked her.

Breathe, said the Owl.

It was good advice. I stood barefoot on the lawn under the moon, letting air fill my lungs and then empty. Over and over again. Eventually I calmed.

The Owl was still there.

What shall I do now? I asked.

Sleep, said the Owl.

Tearily I put myself to bed.

On Wednesday morning I was bright-eyed with excitement. My new life! All the things I might do.

I made a cup of tea. I sat at my desk.

I unravelled.

All of the doors that were closed…

I shed a few tears.

I became angry. I shouted at the walls. At the bigness of the sky, and at the stupid smallness of me.

I pulled myself together.

I busied myself tidying things and making lists. These are the old ways I have fallen back on time and again to soothe myself into that sense of control, although I know it is an illusion. I am fine, I told myself. I am coping. Better than fine. Better!

That night the Owl was there again.

I stood outside with soft rain falling, misting my hair and skin with its gentle caress.

Owl, I pleaded, I don’t know what to do.

Rest, said the Owl.

I put myself back to bed.

On Thursday I breathed out. I mean really, really just let it all go. I felt myself break into a thousand pieces.

They glinted and shone up at me from the floor. It was not frightening. It was simply real. It was what it was.

I knew then, that I had actually been broken for the longest time, but my sheer stubbornness and momentum had prevented those crazy shattered shards of me from falling to the floor. I had only looked intact. That too, was an illusion.

I am not coping, I said to my husband. I am not coping, I said to the Owl.

I know, they said. Rest, they said.

I woke on Friday. Still broken. But knowing that too was an illusion. How could I be broken, surrounded by tiny glistening shards as I was, when part of me was still so solid and whole?

Awareness came. Just like all of the characters in my favourite books, my life hasn’t gone to plan. I have been tested and challenged. I have faced torment, loss and pain. So many of my dreams have been thwarted. There is still a long road ahead of me as I move back towards wellness. But the beauty is that the story of my life isn’t finished yet.

My dear friend, Kim, helped me to put things in perspective;

“All those things you missed… I know they seem real to you, but you have done other things that some of us can’t dream of. I’m reminded of Odin, who gave up one eye so he could “see” and know the mysteries of life. So he has crap depth perception but he can see things nobody else can.”

I am okay, and this is just how my life is, I told myself. And it was true. I was gentle with myself about the grief and sadness still within me. Life touches us all with some suffering. I felt the truth of my friend’s words, and acknowledged my psychic experiences so few others get to share. I laughed at myself a little, for the crazy ambitious plans I’d held for so long, for when I was ‘well’.

Those plans exhausted me just to think about them. I let them slither through my fingers and fall to the floor. I watched those plans streak off to find others to help them with their becoming.

The Owl was sitting in a branch of the old teak tree outside my window, eating her breakfast, as I sat at my desk, sipping a cup of tea.

What do you think? I asked Mistress Owl. This time I was comfortably empty. There was no neediness left inside.

Write, she said. Write.

Write what you know.

Oh, I thought. All the things? That’s a bit provocative. How might people react?

But all the while I was thinking yes, yes, I can write what I know. Who cares how people might react. I shall write. It’s something I can do while I’m healing. It’s a way to contribute.

Even more than that, as I sat with my decision, and this gentle new direction, I found a place of understanding within me. The things that I might write? I wish someone had written that book that for me. To hold something like that in my hand, at the times where I was breaking, reforming, emerging, well, it would have been an enormous comfort.

Beautifully brave Hermione Granger, with her head always in a book. Image from 100 Classics

Beautifully brave Hermione Granger, with her head always in a book. Image from 100 Classics

And then my lovely friend Sally sent me this:

“Yet, I get to tell my truth. I get to seek meaning and realization. I get to live fully, wildly, imperfectly. That’s why I’m alive. And all I actually have to offer as a writer, is my version of life. Every single thing that has happened to me is mine.” ~ Ann Lamott

To help others make sense of their journey, through the sharing of mine. That’s something I am well qualified to do. There has to have been a reason for all of this. My job now is to reflect deeply upon that, and to turn my wounds to wisdom.

Last night there were three Owls. Teach, they said. Share. Help the others.

Mistress Owl is there in the tree outside my window again this morning. We went flying together last night, the Owls and I, and I had a vision of what comes next. There are no doors involved at all. We’d risen way beyond doors to a clear, open space. And it was beautiful.

Bless xx

Image from the Matinee

Image from The Matinee

Heartbreakingly Wonderful News

“How strange that the nature of life is change, yet the nature of human beings is to resist change. And how ironic that the difficult times we fear might ruin us are the very ones that can break us open and help us blossom into who we were meant to be.” 
Elizabeth LesserBroken Open: How Difficult Times Can Help Us Grow

 

Would you be surprised if I told you of the bittersweet joy that is my healing journey?

I have experienced deteriorating health since 1984, when I was bitten by a tick during a picnic in Brisbane. For thirty years I have fought to obtain a diagnosis and effective treatment for this invisible illness which has slowly but surely stolen my life.

In January, 2013, I was finally diagnosed with Lyme Disease.

Yesterday I went back to my Lyme doctor to investigate my progress, one year into our aggressive treatment plan which uses antibiotics, herbs and diet. One year on, both my doctor and I needed some kind of tangible evidence that this treatment plan was working.

Since my late teens, when I first became ill, I have tried so many things in my efforts to regain my health. Until last year I’d actually tried EVERYTHING I could think of except antibiotics.

EVERYTHING.

Natural therapies, complimentary therapies, medical specialists, psychology, hypnotherapy, past life regressions, chelation, ozone therapy, detoxing programs, every kind of diet, nutritional supplements, all kinds of machines and energy work, every network marketing product, spiritual healing, positive thinking, meditation, prayer…

Everything.

Three decades of my life, and hundreds of thousands of dollars worth of ‘everything’.

Some of that ‘everything’ kept me alive.

Some of that ‘everything’ even gave me limited improvement for a time. But still, I ended up with lesions in my brain, cardiomyopathy, and on a fast track to my own imminent demise.

A year ago I was dying.

I had my affairs in order. I’d made my will.

At the end of 2012, life, as I knew it and lived it, had diminished to such an extent that I knew there was nothing left to sacrifice. Piece by piece, year by year, I have given up on things. On dreams. On hopes. On normal things. Simple wishes. I kept making choices based on a smaller and smaller view of the world.

I found clever ways to keep existing, and to be grateful for being alive, despite those limitations. I made choices, not based upon the wishes of my heart, but simply based upon what I might cope with, while still managing to shape this small world of mine with meaning. And I told myself that was okay.

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I kept up a running commentary in my head, in my meditations, even in my dreams. I would be okay. I would get through this somehow. All of this misery must be for some higher purpose. One day, I’d tell myself, as I desperately tried to cling to the tattered shreds of my life. One day I would make sure that my life truly did count for something. One day, I would find a way to heal. I hung on and would not let myself face the possibility that it might turn out otherwise. One day I would be well again, I told myself.

No matter how hard it was some days to believe that this could possibly be true…

And then I did find a way. Through a set of divinely synchronistic circumstances, a brave and clever doctor diagnosed me with Lyme. Another brave and clever doctor was prepared to take me on as a patient and treat me. I was prescribed truckloads of antibiotics. Ridiculous amounts that made me more horribly ill, even as they were supposed to be making me better. If I wasn’t herxing, I wasn’t healing, I was told.

It took all I had to hang in there with the treatment. I’m glad I did. Under the care of this kind and compassionate doctor I have made incredible progress.

I still have a long way to go. But the lesions in my brain? Gone. The cardiomyopathy? Resolving. In fact, my heart is on its way to being normal. Do you have any kind of idea how big of a deal that is?

My bloodwork has improved.

I can feel strength returning to my body.

My mind works again. I mean REALLY works. Works so that I can write. Works so that I can function.

I’m not independent yet. I have another two years of drugs ahead of me. I still can’t drive. I’m still in pain. I am still fatigued.

But I am healing. I am alive. And finally my horizons are expanding rather than contracting, after just one year of intensive antibiotic therapy on top of all the other good things I was already doing.

I should be overjoyed.

Please, don’t get me wrong. I am overjoyed. My husband is. My family are.This is the best of news.

It’s just that I am also so very achingly sad right now.

As I stood in the shower on Sunday, Mother’s Day, I cried. Because of Lyme I have miscarried five times. I shall never be a mother. Lyme took that from me, and so much more.

My husband gave up his career to care for me, and it is too late for him to get that career back. The career that was his passion, his pride, his life.

We have both missed out on family time, and time with friends. Our finances and future security have been impacted, and our resources dwindled in my pursuit of health. Over the years we have watched genuine caring doctors, willing to think outside the box for patients like me who had fallen through the cracks, be persecuted and closed down.

Because of Lyme I have given up career paths, education, business opportunities, dreams, relationships. I have said no to so many things. I have been unreliable in my life, and with those I love. I have endured the criticism, judgement and contempt of many, including health professionals, family and friends. I have been in bed, in a quiet dark room, or living small, while life moved on without me.

I will never get those years back. My husband will never get those years back.

I held my Lyme drugs in my hand this morning. A few tiny pills. Pills that are making me well. Pills that could also have given me a whole other life, if I had only taken them earlier. I have recently learned that my government was advised back in 1990 that Lyme disease existed in Australia, and that doctors needed to be educated to better deal with this new threat, which was expected to become more common.

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Imagine, if I had been diagnosed back then, at a time when I was already so ill, when my family and I had already suffered so much.

I’m grateful for all that this disease has taught me. I’ve learned humility and compassion. I can honestly say that living with Lyme has grown and shaped me in positive ways. It has forced me to walk a spiritual path, and to explore that path with a dogged determination as I looked for answers.

But in the end, my answer came largely from modern medicine. Alternative medicine and my spiritual practices kept me alive, against all hope. Modern medicine is what is giving me my life back. Antibiotics, anti-microbials, anti-malarials. Tiny little pills.

All that misery, all that pain which my family and I might have been avoided if only I’d been diagnosed earlier and been given those tiny little pills.

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For all of you dealing with Lyme and its co-infections, I urge you not to give up. Healing is possible. I am healing. You can too. Something in the mix will work for you, as it has for me.

This bittersweet symphony that is life is still beautiful to me, and I am grateful beyond words to be given a way back to health.

I am also grateful with everything that I am for all of you who have encouraged and supported me, who have sent me messages and cards and gifts that were often the ONLY bright moment in the darkest of my days. You deserve credit too, for keeping me alive and helping me to hang in there. Thank you.

Yesterday as much as I celebrated this glorious victory, this incredible come-back in the fight to become well, I mourned my losses, and grieved the life I gave up on the way to becoming who I am. I know that there is more loss there yet to be acknowledged. I know that grief can tap me on the shoulder, and cut me off at the knees when I least expect it. That’s okay. It’s part of my healing process too.

Today I am stepping forward with optimism, and renewed purpose. My life matters. I am here for a reason. In stripping so much of my life away I have come to know my core, my essence, and I know this next part of my journey is to embrace that fully.

I love that I am healing. I love that there is still time for me, and that I will be well enough to use that time to a greater purpose.

My progress is heartbreakingly wonderful news.

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Some useful links:

Lyme Disease Association of Australia

Karl McManus Foundation Australia

Lyme Disease Association, Inc United States

The Canadian Lyme Disease Foundation

#Lymetime – The Big Day Looms…

Image by KicsterAsh

Image by KicsterAsh

“I still think that everyone’s life, no matter how unremarkable, has a singular tragic encounter after which everything that really matters will happen. That moment is the catalyst – the first step in the equation. But knowing the first step will get you nowhere – it’s what comes after that determines the result.” 
Robyn SchneiderThe Beginning of Everything

 

It’s a little over a year since I began my treatment for Lyme and various co-infections, and this morning my husband is taking me back to my doctor to get the results of a huge barrage of tests to see what progress I have actually made since beginning my drug and herb regime.

There will be a lot to talk about. In this past month I have had brain scans, heart scans, bone scans, and innumerable blood tests. Among other things…

I admit to being nervous. I want for this appointment to go well. I want to hold in my hands some tangible proof that all of this suffering has been worth it in the name of progress.

Truth be told, despite the horrendous nature of the drugs, and the herxing, and the misery, I really do believe that I have turned the corner. My brain is working again. I can feel a strength in me that wasn’t there even a month ago. But will this feeling translate into some kind of scientific evidence?

Yes, I am the psychic who needs proof. I don’t want to trust ‘just a feeling’. I want that feeling validated by objective data!

This morning I’ve meditated, sipped tea, hurried down a little food so that I could take my meds, and now I’m dressed and ready to go just as the sun is coming up. It’s a long drive, and today I will be the first appointment in my doctor’s day. Oh, the butterflies in my stomach. Oh, the apprehension.

Fingers crossed…

I promise I’ll let you know how it all goes. :)