One of those days. One of those nights…

“You think your pain and your heartbreak are unprecedented in the history of the world, but then you read. It was books that taught me that the things that tormented me most were the very things that connected me with all the people who were alive, who had ever been alive.”
~ James Baldwin

 

I had high hopes for yesterday.

A few early morning pathology tests, and the rest of the day stretching empty and waiting to be filled.

But no.

Yesterday was pooping into jars. Bloods. And then meds. A big fistful of meds to kill what might be lurking in my gut.

After which my day went to hell.

And my night too.

A dose of this drug to treat  lyme would be a quarter tablet twice a week, and I took a fistful of tablets. Because I’m not treating lyme. I’m treating persistent gut bug that won’t go away. Too bad, lyme. You’re going down too!

My face is numb. My body’s arched in pain. I can’t see out of my good eye and my bad eye is all wonky and double visioned. Old herxing patterns.

Awesome.

So I’ve cried a bit and felt sorry for myself. But the vomiting is done. And there’s no more blood in my poo. And it all seems to be working. And I know the trajectory of this. I feel bad to get better. That’s something I know how to do.

I’m sure by tomorrow I’ll already be 100% more fabulous AND with less lyme.

Win-win.

In fact I can finally go home to the farm today. Hooray!

Sorry, lovelies. I’m a little more unreliable just now than I had expected.
Love you all heaps. A thousand apologies again.
Nicole <3 xoxo

Choosing Your Emotional State

“Bad things do happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness, immobilized by the gravity of my loss, or I can choose to rise from the pain and treasure the most precious gift I have – life itself.” ~ Walter Anderson

 

I travelled to see a new Lyme doctor yesterday. In Australia they are getting harder and harder to come by. This one lives hours from my home, so we allocated an entire day and my husband Ben drove me. I am still not up to driving most days, and certainly not a trip of this distance.

After 2 years of intense antibiotic therapy which saved my life, I was unable to find anyone to continue my treatment, and had to stop midway through a program of therapy. Why? My first doctor was shut down, and my second stepped away from practice. My third doctor wouldn’t treat me because of the risks to their career, although they were happy to supervise me on the protocols of a previous doctor until my medications ran out. so, like at many other times in my life I was back to doing my own doctoring.My fourth doctor, the one who initially diagnosed me, still refuses to treat me because it’s ‘too controversial’ – although they will put me on a ‘wellness program’.

Since then I’ve supported myself with herbs, diet, essential oils, acupuncture and detoxing. I have a good GP who is supportive but doesn’t know anything about Lyme. I’d been doing pretty well, apart from a few hospitalisations. But now my chest pain is coming back, and some other worrying symptoms. Symptoms that recently eased when I went on a course of antibiotics for something entirely unrelated. So I know I need to be back under the care of a lyme literate doctor.

To be honest, yesterday was a difficult day. As we drove I knew that my friend Liz was above me in the sky somewhere, winging her way to Hawaii with her family. After a recent cancer prognosis Liz knows she has a very short time left on this earth. I was thinking of her, and the conflicting emotions she would be feeling as she made the journey for what might be her last holiday with her loved ones.

When I wasn’t thinking about Liz I was reviewing my thick folder of health notes. These aren’t all my notes and results. Just the ones from the last few years. The entirety of my notes fills a filing cabinet, and that isn’t even all of them. In fact, in peaks of chagrin or frustration I have thrown many away.

As I looked through my medical files, I became increasingly distressed. I’ve been seriously ill since my late teens. This illness has shaped my entire adult life. Restricted my life. Impaired my life. Almost ended my life on more than one occasion.

I looked at all of the notes from doctors and specialists and natural therapists who didn’t believe me, or put the blame on me when I didn’t respond to treatment. I looked at all of my various diagnoses and treatment plans stretching back to my late teens, when I first became very ill.  I am now nearing fifty and was only given a Lyme diagnosis in early 2013. I could fill a notebook with the diagnoses I’ve had before that.

I thought about all of the doctors whose practices have been shut down over the years for electing to help people like me who are falling through the cracks of the medical system.

I thought of the people I know who have suicided because of Lyme when they couldn’t take the pain anymore, couldn’t see a way out, were getting worse despite their best efforts, couldn’t find any support, or whose loved ones grew weary of the burden of their care. Of all of the sufferers who have never been believed or taken seriously, although they are desperately ill.

I thought of all of the lyme sufferers I know who have died from this disease, or the complications that have arisen from this disease.

I thought of how much money and time I have thrown at this, for such limited results.

And I got angry.

So here I was. Angry and nervous.

Nervous because what if this new doctor turned me away? What if they didn’t believe me?

I forgot to say fearful. I was fearful too. Because I am so much better than I have been and this chest pain is awful and I am so frightened of sliding back to where I was. Or worse.

By the time we arrived at our destination I was a churning mess, although I was trying to hold onto optimism.

The appointment itself was frustrating. The doctor wants more information. They are being very careful. Who wouldn’t, in a climate of such persecution of medicos? While they review all my recent results from the past few years, and discuss my case, I will wait. Hopefully this doctor will then take me on and I will finally have a supervised course of action.

As we drove home in a car filled with silence, I came to a profound understanding.

Most of my life I have faced hardship, especially in regard to my health. Despite that I have remained optimistic. I have made plans. I have held to a vision of a positive future. I have lived despite my disease.

This year I have so many lovely things organised. I am blessed with my husband and the love of my two crazy hounds. My little farm fills my soul with peace. I am well enough to work. I am finally well enough to travel. (Yes, I have chest pain and yes that freaks me out, but I have travelled and lived with this before and been fine, and if I croak it, it won’t matter anyway!)

So I decided yesterday that what matters most is my attitude. I just can’t afford to get bogged down in the injustice and awfulness of it all. I can’t get bogged down in my own personal history. I can’t even get bogged down in my current situation. I have to stop opening that damned folder! I need to rise above this, to turn my face towards the sun and stop looking behind me.

When I think of my plans and I sit in gratitude for my life, I can still be happy. I can still feel good inside.

That dark bird of death always sits on my shoulder. Just as she follows each one of us. But I am comfortable with her now, and she helps me to remember what is important and good in my life. Her presence is a blessing because I am reminded to live mindfully, to chose what matters and to live that. No more for me the life of an automaton. I cannot take life for granted and I won’t.

None of it matters, really. We will all die. We don’t know when. But while we are alive, we can live. And what we choose to think and focus on colours every single day.

I cannot always choose my outcomes or my circumstances, but I can choose my thinking. And that is a powerful place to be.

 

 

Lit up like a Lyme Green Christmas Tree

Image from Thinkstock

Image from Thinkstock

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

 

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

This time?

My doctor recommended a new combination of Lyme drugs.

Result?

A night of small seizures and a misbehaving brain.

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

I also woke with my voice totally gone.

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

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

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

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

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

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

Best Christmas present ever! 🙂

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

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

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For more information on Lyme disease go to: 

Lyme Disease Association of Australia

Karl McManus Foundation Australia

Lyme Disease Association, Inc United States

The Canadian Lyme Disease Foundation

I should be grumpy this morning…

Image from lalal

Image from The Bump

“The art of being happy lies in the power of extracting happiness from common things.”Henry Ward Beecher

I should be grumpy this morning.

Really, really grumpy.

I have now completed my third drug-free week from my lyme treatment, letting my liver have a break. At first I was so grateful to not have to put fistfuls of pills into myself. The drugs themselves are a nightmare, and I was celebrating not taking them. My body sighed with relief and my toxicity levels dropped. For a moment I felt marginally better.

But then some of the old symptoms I haven’t experienced for months flared up. Bartonella pains, babesia night sweats, lyme brain, chest pain. No fun at all. And it has become steadily worse. Worse enough that I’m looking forward to starting those horrible drugs again next week.

Each night now I endure pain, and insomnia. Last night was especially uncomfortable, and I didn’t get much sleep at all.

I should be so grumpy.

But last night I lay awake and listened to the sound of rain on our city roof. I peered into the bright screen of my iPad, loaded the weather radar and watched great clouds of rain dumping their load over the farm, imagining how the parched land would be sighing in relief.

I lay in the dark, hours later, and listened to the soft regular breathing of my husband, newly home from hospital. I reached my fingers out to him in the darkness and settled my hand on his chest.

Finally, after endless hours of misery I fell into a restless sleep.

I was dragged up from a disturbing dream by a persistent tugging on my arm.

Cafe Dog (known to some as Harry!) had my arm in his mouth and was trying to pull me out of bed. He let go, nudged my face and licked me. Then he bounded to the door.

Everyone was already up. It’s a glorious day. The air is fresh and clean from all the rain. The sunshine is dazzling. All my loved ones are happy.

So, I should be grumpy, but I’m not. Life is blessing me right now, and I’m not going to miss a moment. I can nap later, but right now morning calls, and Cafe Dog is keen for us to go to our favourite Brisbane haunt for an early breakfast, some writing and a little socialising.

No matter what is going on right now that is outside of my control, I can choose how I feel in each moment.

I choose love.

I choose happiness.

I choose gratitude.

How about you?

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Today’s Post Is Short For A Very Good Reason

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“We have to allow ourselves to be loved by the people who really love us, the people who really matter. Too much of the time, we are blinded by our own pursuits of people to love us, people that don’t even matter, while all that time we waste and the people who do love us have to stand on the sidewalk and watch us beg in the streets! It’s time to put an end to this. It’s time for us to let ourselves be loved.”
~ C. JoyBell C.

 

Something people with chronic illnesses know all too well is that many, many relationships fall by the wayside.

Family stop calling. Friends drop away. Many love relationships fail to weather the endless storms.

And life is relentless. It takes effort to keep swimming in the stream.

What to do? There’s a mile of business to attend to, and a house to tidy. There’s a hamper full of washing. The garden needs weeding and there’s a manuscript to edit. I have a list of unanswered emails longer than the Great Wall of China.

So, how am I going to spend my time?

Doing none of that.

I’m going to spend my day being really present with the ones who love me. The ones who are always there for me. Even when I am so very infrequently there for them with energy, enthusiasm and abundant spare time.

I’m spending today with my husband, and our two dogs, Bert and Harry.

I’ll see you tomorrow.

Lots of love, Nicole xx

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Attack of the Gorn

“Of all the things we can feel with our minds and bodies, severe pain is the purest, for it drives everything else from our awareness and focuses us as perfectly as we can ever be focused.” ~ Dean Koontz

 

There is this thing that happens to me on my current Lyme drugs.

It started in a small way. Bacteria began dying in my nerve endings. As they die, they release toxins. Awesome…

One night, delirious with fever, I thought that small lizards were hiding in my sheets and biting me. That was exactly what it felt like at the time.

And those lizards were mean!

Then it settled down for a while, and I’d thought that was the last of it.

But as I’ve ramped up my meds, the lizards have come back, and this time they’re bigger!

Now it feels as if large mean lizards are taking random chomps out of me with their hard plastic mouths. These are some hungry lizards, that’s for sure. Chomp. Chomp. Chomp.

Chomp on my cheekbone. Chomp on my thigh. Chomp on my belly, my eyelid, the top of my foot. Chomp on my lip, my hip, the very tip of my nose. Chomp, snap, chomp.

Image from Gweenbrick

Image from Gweenbrick

The sensations are horrid. Breathtakingly painful – somewhere between a stab and being tasered, although that only lasts a moment or two, after which it subsides to a less agonising sting. That’s exactly what a villainous lizard with a nasty mouth full of needle-sharp teeth would feel like, right?

Sometimes I can’t help myself and I will gasp with the pain of it. Or flinch and go all wide-eyed.

Which does look a bit odd when you’re out and about. But of course, how are you to know that I am under invisible attack?

My husband and I have developed a code for this now. I call it Gorn Attack.

“You okay?” he’ll ask me.

“Yeah,” I’ll nod. “Just Gorns.”

Have you met a Gorn before? Gorns are a brutal lizard-like race that Captain James T. Kirk fought so valiantly in Star Trek.

Where is Captain Kirk now, I ask? I could really use some help here.

Image from Kotaku

Image from Kotaku

Gorns then made a reprieve visit when Sheldon Cooper was conversing with Tiny Spock in Big Bang Theory. Sheldon was horrified to be attacked by a Gorn. It was his worst nightmare.

I know how he feels. 🙂

I guess it is kind of interesting. Maybe all of this will come in handy some day for a sci-fi story, or if I ever do meet a real live Gorn or end up in a parallel Star Trek universe. I feel I am developing quite an expertise when it comes to handling Gorn Attack. My weapons are primarily meditation, ninja mind control and magic.

When that doesn’t work, epsom salts baths, infrared saunas and Himalayan salt with vitamin c drinks often do the trick.

I have another four and a half months on these particular drugs. Maybe more. And there is no way I’m quitting.

So, Mr Gorn, bite me!

Image by Jim Doran

Image by Jim Doran

Requiem For A Lost Poet – #Lyme

Photo of Heather Askeland

Photo of Heather Askeland

“I don’t need a cloak to become invisible.”
~J.K. Rowling, Harry Potter and the Sorcerer’s Stone

 

I found out earlier this week that a fellow Lyme sufferer in the USA took her own life. I never met Heather, but I know her journey. All late-stage Lymies know, and understand, because so easily, that could have been us. The news of Heather’s death made me sad. So very sad. And angry. But anger won’t bring her back.

The news of Heather’s death made me feel helpless too. I never knew of her struggle until it was too late. This wretched disease that has wreaked havoc and destruction in the lives of so many, including mine, became too much for this young woman to cope with on her own. People need to know. It isn’t right.

Sadly, Lyme disease, like most ‘invisible’ illnesses has a very high suicide rate. Sufferers get worn down by their illness, by the cost of treatment, by the contempt of friends, family and many in the medical fraternity who don’t believe that they are sick. When you are desperately ill, and you can’t work, and you have no money and no safety net of family or friends (or you wore out your welcome, or spent your family’s last dollar) and you can no longer take care of the most basic survival tasks in your life, you run out options pretty fast.

But that’s not why I’m writing this post.

I’m writing to honour Heather Askeland as a poet, and an artist. I wanted to share her work with you. I wanted her to be remembered with the fullness of who she was.

This is a poem she wrote about selling her beloved violin to help pay for treatment:

the sold violin by Heather Askeland

the A string keens, a notch flat, lost
songbird carrying morning.

the sun is a steak knife slicing dust.
you crouch, release the zipper’s

low whine. case like a toothless mouth.
there is no music here.

no wooden neck to cradle
like a newborn’s head,

no thin steel creasing prayer
into fingertips. no satisfied tendons,

no sweat
other than the nightly fever.

you used to play Tchaikovsky.
your fingers were silverfish,

the audience thunderclap your
favorite drug. now bright lights spin

you like a top. snap you in two,
a severed dandelion.

you are lucky. illness is expensive.
you trade horsehair and childhood

recitals for antibiotics.
how many centimeters of soundpost

for homeopathic injections? for the
metronome of an IV drip?

how much varnish for hair loss?
for the skipping stone

pulse, for each battle between gut
and bread? which Bach sonata

for the skeleton memory?
your neurons are sunken ships,

the dead fish sing you lullabies, let meat
rot in cupboards and crackers grow freezer crystals.

for a moment you panic. wonder why
the case is empty. check the windows. the cats

are two otters in their sun pools.
you remember: the violin is gone.

the violin is everywhere.
it is white cells, methylation pathways

morning yoga sessions. medication three times
a day and herbs that taste like molding twigs.

the 1812 Overture blasts its cannons
with each push of blood from chest to toes.

no one can hear it but you.
your arms are warm.

the music never left, is waiting for you
to turn it up.

Image from wall alpha coders

Image from wall alpha coders

And this is the final video Heather made, her one last shot at trying to find help. As you already know, it never came.

 

Spare a thought for Heather today. Say a prayer, send a blessing, wish her peace. Honour her short life for the artist she was – not as her disease, not as a lyme warrior – honour her for her poetry and her caring heart.

Heather Askeland

Heather Askeland

Two Steps Forward…

 

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“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

Warm Spiced Turmeric Milk Recipe

“Each spice has a special day to it. For turmeric it is Sunday, when light drips fat and butter-colored into the bins to be soaked up glowing, when you pray to the nine planets for love and luck.” 
Chitra Banerjee DivakaruniThe Mistress of Spices

Turmeric Milk is a traditional Ayurvedic drink, often called by the wonderful name Golden Milk. I use cows milk to make mine, but have also used other milks including coconut and almond very successfully for those of you who are dairy-free. As a warm drink before bed it comforts and soothes.

Turmeric has many health benefits, and is one of the herbs that has truly helped me get on top of Lyme disease. It is very detoxifying and protective for your liver, as well as being anti-inflammatory, a powerful anti-oxidant and a natural pain-killer. Combined with warm milk and a few other spices, you get a nurturing drink that helps you sleep and heals your body at the same time. It is also soothing for upset tummies, and helps relieve cold and flu symptoms.

You can make this recipe with just the milk, turmeric and honey, but the addition of ginger, pepper and cardamom gives additional health benefits and a whole extra earthy dimension to the drink. Well worth the little extra effort, I think!

Ingredients for one serve:

1 cup or mug of milk (cow, almond, goat, soy, rice, coconut – whatever works for you!), 1/2 to 1 teaspoon of powdered turmeric, 1/2 teaspoon of ground cinnamon, 4 black peppercorns, 2 slices of fresh root ginger, 4 cardamom pods – lightly crushed, 1 teaspoon of honey or maple syrup (or stevia for sugar-free and diabetic friendly)

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Method:

Add the cold milk and spices to a small saucepan and place over low heat. Gently warm the milk to just below boiling point and then turn off the heat, cover and let the milk sit for a few minutes to further infuse the flavour.

Strain into a cup and enjoy. I find it sweet enough, but you may add extra sweetener to your personal taste.

Oh, and did I mention it’s yum? 🙂

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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.

Sept10 110

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