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.

lyme letter

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. 🙂

Wrong Numbers and New Friends

Image from www.Radio2.nl

Image from www.Radio2.nl

“Sometimes wrong numbers are the right numbers.” ~ Cecelia Ahern, The Time of My Life

 

Late yesterday afternoon I tried to call my sister. My new drugs are kicking in and so my eyes were all twitchy and I was having problems seeing. Somehow I put in one wrong digit.

“Hello?” An older woman’s voice, surprised, answered the phone.

“Mum?” I said. I’d been expecting Simone. What was Mum doing there? Was it even Mum? It had to be Mum… Trying to place the voice against the background noise of a blaring television I tried again. “Hello? Mum, is that you? Can you hear me? It’s Nicole. “

There was a pause, and then the woman spoke again. “That’s a beautiful name, darling. Nicole did you say? That’s French isn’t it?”

By now I had worked out that this definitely wasn’t my mum on the other end of the line, but something made me keep talking.

“Yes,” I said.

“Well, you can call me Mum, sweetheart,” the old lady said. “I’d like that very much.” She asked where I was calling from, and I explained that I was here in Brisbane for a few days but that I normally lived on a farm.

Well, ‘Mum’ was away! Telling me all about her days growing up on a farm on the outskirts of Toowoomba, and then later the animals she kept at her little house in Brisbane after she married and when her children were growing up. She’d had ducks and chickens and a lovely big vegetable garden, right here at Mount Gravatt. Of course as she’d gotten older she’d had to let all that go…

Photo by Erika Stardig

Photo by Erika Stardig

“Ducks,” I said. “Good eggs, duck eggs. Great for cooking.”

“Oh, do you like to cook?” she asked.

We chatted for a few more minutes, and she told me about her son who had gone off to fight in Vietnam and who came home and tore the chook shed down after his father’s home brew kit, kept in a lean-to beside the shed, had exploded one hot summer’s night and scared the life out of them all.

Eventually I excused myself and hung up so that I could call my sister.

Just before I went to bed last night my phone rang. It was still early so I answered it, thinking the number was my sister’s.

“Hello, Nicky,” the voice said, “it’s Mum again. I have my own Mum’s recipe here for Duck Egg Sponge. I knew I had it somewhere, and I thought you’d like to have it. She cleaned up at the Show every year with that sponge. You can probably get duck eggs down at your farm so maybe you could give it a go.”

I carefully wrote down the ingredients and instructions.

Image from Dann Good Cake

Image from Dann Good Cake

“Are you okay, love?” she asked as I began coughing violently – a side effect of the evening’s drugs.

I waited for a wave of nausea to pass and then briefly explained that I was unwell and starting on new medications which made me feel sick.

“How about I call you in a day or so?” Mum asked. “Just to see how you’re getting along. Would that be okay? You know I’ll worry about you if I don’t. And don’t you go making that sponge cake yet. You should really be having a shower and hopping into bed. Go on then, off you go. Sleep well, Nicky love. And I’ll ask Saint Peregrine to watch over you. And Raphael too. He’s my favourite Angel. I’m a lapsed Catholic dear, but I’m still very fond of some of their Saints and Angels.”

I just love the synchronicities and everyday miracles of this life, don’t you?

We are, all of us, so very much loved, and connected in magical ways we’ll never quite understand while we’re down here living out our days.

Image from Epoch Times

Image from Epoch Times

Unexpected Blessings

Original image source unknown

Original image source unknown

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

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

I cried.

A lot.

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

Six more weeks.

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

Oh. My. Goodness.

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

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

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

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

Their love lifted me up.

Image from Travelling Yogi

Image from Travelling Yogi

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

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

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

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

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

The medallion that fell out at my feet?

My Saint Peregine medal

My Saint Peregrine medal

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

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

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

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

Image from Hatke Quotes

Image from Hatke Quotes