My Sweet Poison

2014-01-25 09.19.57

“Faith is walking face-first and full-speed into the dark. If we truly knew all the answers in advance as to the meaning of life and the nature of God and the destiny of our souls, our belief would not be a leap of faith and it would not be a courageous act of humanity; it would just be… a prudent insurance policy.” 
~ Elizabeth Gilbert

“Faith is about doing. You are how you act, not just how you believe.” 
~ Mitch Albom

 

What is there to say if we cannot be honest with each other?

Let me show you something.

Saturday morning. Sitting in a Byron Bay cafe, unbidden tears rolling down my cheeks.  I was there with my ever-patient and supportive husband Ben, who had managed to rouse me from my coma-like state long enough to get me out of pyjamas and into some street clothes that still somehow resembled pyjamas.

So there I was. Weak latte at one elbow, a pile of unread weekend newspapers at the other. Harry the cafe dog lying on my feet, while I drew strength and grounding from his reassuring presence.

These new drugs I am on are a nightmare. I count every day that I must take them. Two weeks, four days to go.

They are my sweet poison. I can literally FEEL them working from just after they enter my body. For the first two weeks I experienced massive body pain, insomnia and complete exhaustion. My brain was numb. I was numb. Couldn’t read. Couldn’t think. Couldn’t connect to anything during the day. Couldn’t sleep at night, when all of that disconnect would dissolve and leave me stuck in this misbehaving body.

I was so not like my usual self. Empty headed. No ideas, no ability to converse or articulate my needs. I would get one good hour, sometimes less, each morning between when I struggled out of bed and when I began the regime of drugs and herbs that are making me well. Thank god for that one sane-making hour. Then it was back to the place of disconnect.

At least in that space of disconnect I was feeling the pain, but often from a distance, during daylight hours anyway. Anyone who has taken Valium or other such drugs will know what I am talking about. If the house had been burning down my thought process would have looked something like this:

‘Oh, look. Flames.’ Observes them licking across the bedroom ceiling. Observes them set the curtains alight. ‘Boy, it’s really taking hold.’ Turns over in bed and readjusts the pillows.

At night my bed was burning, and I was still in it. But this time I knew it, and I couldn’t make it stop…

Image from Sodahead

Image from Sodahead

So after the trauma of no sleep and endless pain Thursday and Friday brought me two straight days and nights of sleep. Sweet sleep. Sleep with rich lucid dreams.

One good thing, though. My brain is waking up and kicking into gear although I don’t yet recognise the landscape.

I wake long enough to drink some water, take some tablets, go to the toilet. All in a shuffling half-awake space, like a turtle breaking the surface for a sip of air before returning to the depths and those crazy seem-real dreams.

It was in one of those cresting moments of wakefulness on Saturday morning when Ben magically transported me down to Byron.

Sitting there at an outdoor table with my coffee, music in the background, soft rain falling and friends stopping to say hello, I was overwhelmed with sensation almost too much to bear.

The muted sunlight seemed too bright. The background music so loud. Conversations washed over the top of me and I struggled to catch those shining bright words one by one in my clumsy fists. By the time I had captured enough and threaded them into some sort of meaningful order the friends were on their way, their questions unanswered, their faces kind and perplexed. Sorry, I want to shout after them.

But already I was forgetting what for.

On Saturday morning I sipped my latte, holding it carefully in both hands as a child would do. I am shaky and weak, and my spatial awareness is awry. I find it challenging to get food or drink neatly to my mouth. I hope no-one I know saw me as I put my breakfast toast in my nostril and fed coffee to my chin.

At meal’s end I insisted on paying, shuffling into the cafe to hand over my money. My balance is poorer than I remember and I lurched forward like a drunk. This was not one of my better plans. Cafe Friends who we met through our mutual dogs, looked up in alarm as they watched me surf on wobbly legs to the counter. They do not know I am ill. I am aware that I am walking like a Thunderbird puppet right now – all jerky clumsiness and startle reflexes. It’s not just my friends who were staring that day.

They whispered to themselves, shocked, and although I would have liked to go over and have a quick chat, assure them I’m okay, that this is just a bad patch on the way to being well, I knew it was too much to explain and anyway, there were so many steps between me and them.

Home again, to pyjama land. But not to sleep. Not yet. Someone had shoved a pitchfork in my skull and they were twisting it for all they’re worth. The pain? Exquisite.

I slept away the rest of Saturday and much of Sunday.

So how is my Monday? If I were a pirate I would make pain walk the plank and feed it into the grasping maw of a giant shark.

Meditation is the only thing that gives my waking hours real relief. Sleep is better. Sleep is pain-free, and my dreams entertain me better than any book or movie. I like to think that while I am sleeping I am also healing. That glorious battles are being fought in my name and that good work is being done. That these wretched bacteria inside me are dying in droves and my cells are bringing out the dead as the meat wagons travel through my veins.

Image from MOCpages

Image from MOCpages

I wish I could feel normal. I would like to be baking something. I would like to be walking my farm or going for a swim, or working on a book. But sleep is clawing at me, and I can feel myself turning to sand beneath those insistent fingers. Am I even awake? Was Saturday’s breakfast real or just a dream?

Please, when I finally wake properly from this, let me have morphed back into myself. Meanwhile, I’ll keep taking my sweet poison. I’m planning to kill all these bacteria before they kill me. It’s the best plan I’ve got, and anyway, I’m winning.

It really is true. That which does not kill me makes me stronger.

So my question to you is this: What medicine do you need right now? Even if it doesn’t taste good, if it’s what you need, chug-a-lug babe! This is our year of making things better.

Bottle of Poison by Julie-Chantal

Bottle of Poison by Julie-Chantal

Love Letter To My Left Eye

green-eye

“Yet it is in this loneliness that the deepest activities begin. It is here that you discover act without motion, labor that is profound repose, vision in obscurity, and, beyond all desire, a fulfillment whose limits extend to infinity.” 

~ Thomas Merton

One of the more insidious aspects of stealth pathogens like Lyme and its various co-infections is that these bacteria hide in the most annoying and unlikely of places.

Inside me there are a whole host of squigglies that have taken up residence in my eyes.  My left eyeball in particular has been giving me enormous grief, although both are bothersome. As my medications kill the bacteria, the bacteria release toxins as a parting gift. My eyeballs are battle grounds right now…

It’s frustrating.  Not only do I get horrendous pain and light sensitivity, I also get spasms, twitches, tics and vision distortion. In a world where I rely so much on my eyes, having them temporarily out of action has been getting me down.

I was feeling quite cranky about my lyme-y eyes, especially my left one. Funny what chronic pain can do to you.  Problem is being cranky is not a great healing energy, and not very well aligned with my usual thoughts.

My poor eyes.  It’s not their fault.  They have been doing their best for me; working hard, adjusting to obstacles and continuing to be of service.  Even in their current state I’ve realised how grateful I am for them – how lost I’d be to suddenly have no vision at all.

So I decided to write my problematic eye ball a love letter. Perhaps, next time you are frustrated with your body, instead of directing that frustration at yourself, you could send some love and appreciation too. Most situations flourish far better with kindness, and you might find yourself feeling a whole lot better about things…

Dear Left EyeBall,

It seems I have taken you for granted my whole life.  Like many relationships, it’s only once I’ve noticed an absence that I understand just how much you do for me. I’m sorry about that. I am glad that this illness has given me the opportunity to truly ‘see’ my eyes for the miracles that you are.

Because of you I can see auras.  I can see faces.  I can read books and communicate clearly, even when I don’t say a word.  I get to see sunsets, tiny insects, everyday wonders and glimpses of those special things that forever change you.

You are my guide as I navigate the world, seamlessly letting my brain know where to place my feet or my hands, coordinating food and beverages to my lips, letting me recognise people and places. You gift me independence. You give my life ease.

I’m glad that you blink and cry, squint to protect me from harsh glare, and widen when things delight me.

Right now I’m going to give you a rest so that you can heal. I’m choosing to hold a picture of myself bright-eyed and sparkly. I’m choosing to see you well and  working perfectly. I’m sending you love, and bathing you in white light. I wish you well, little eye. Take all the time you need.

Much love and gratitude, Nicole xoxo

2013-06-17 10.24.44

On illness and being unreliable…


“I’m a very loyal and unreliable friend.” ~ Bono

One of the issues you need to deal with when you or a family member lives with chronic illness is your unreliability factor.

When I speak of chronic illness, I am talking about any condition that lasts for more than a few weeks, that doesn’t conform to a normal healing arc, or a condition that cycles into more active or less active phases.  The condition could be a physical affliction, a mental illness or a combination of these.  For whatever reason the presence of this thing in your life means that there is always a possibility that your plans, no matter what your intentions, may go awry.

Depression makes it impossible for you to get out the front door, irritable bowel means you don’t dare go to that intimate dinner party with the people you don’t know very well, a sudden infection or a flare up for you, your partner or your child and you’re back at the doctors, back on medication, back in bed…

Sick child - image from www.bloggingdad.com

Sick child – image from www.bloggingdad.com

Too often over the years, mine has been the empty chair at the dining table, the empty bed at the retreat, the face missing from the ‘family event’ photograph.

I don’t enjoy letting people down, or being unreliable, so over time I have accepted fewer invitations and my world has shrunk small.  Talk to anyone with a long term health issue and as much as they may seize the day, they often don’t know until they wake up whether the day will be a good one or not – so they become champions of winging it and making the best of those times when they feel strong, positive and with some charge in their battery.

One thing I have come to understand is that you need to have a few friends or family who know what’s going on, who are on your side, and who can cope with last minute invitations or cancellations.

Yesterday I was running on not much sleep, and it was in fact not the greatest of days.  But I had promised to meet a friend for breakfast. She has her health issues too. She understands.  We often text each other at the very last minute to cancel a meet-up, but we do everything we can to get there. We’ve also connected at very short notice, because both of us feel up to it, and why waste a moment?

I’ve caught up with Carly when she’s had an IV line hanging out of her neck, when I’ve been on my way to or home from hospital, and when both of us have felt very much less than glamorous.

Illness has taught me something important.  Friendship is more important that looking fantastic as you head out the front door. Connection is worth more than self doubt. And laughing and being with people you care about, and who care about you, is the very best of medicine.

2013-05-05 09.19.05

Today, both of us are heading back to doctors to have scans and more medical appointments.  Both of us have heads full of wondering what’s going on ‘inside’.

And both of us are unreliable. Not because we want to be.  Not because we are casual about commitment, or how much we care about you.

We are unreliable because our bodies run their own agendas, and we really have no idea how things might look from day to day.

We’ve learned that the cost of ‘making the effort’ to engage can sometimes be too high, and we’ll keep paying for days…

If you’re in the Unreliable Club, I’m sending you lots of love, and I want to remind you that it’s worth trying to make that connection, but that the bottom line is you ALWAYS need to honour your body, and your intuition around situations and relationships.

If you are friends or family of someone with a chronic health issue, I ask that you keep loving them, keep reaching out, and do your best to make sure they don’t end up alone and socially isolated.

One of the greatest tragedies of chronic illness is that so many people end up alone, with no support network. And when we have no one to care about us, and life is so hard, some people give up altogether.

Life is fragile, and we are all vulnerable. Let’s do our best to look after each other, to stay connected, and to live life the best we can with every breath.

friendship-quotes-The-sincere-friends-quotes

Howling at the Moon

Image from Wikia

Image from Wikia

 Those are the same stars, and that is the same moon, that look down upon your brothers and sisters, and which they see as they look up to them, though they are ever so far away from us, and each other.

~ Sojourner Truth

It’s 2 o’clock in the morning and I’m wide awake; fretful and fitful and just a bit teary.

Maybe it’s the Full Moon…

Or maybe it’s the fact that I’ve had three days of doctors, more tests and been given my new expanded treatment regime for Chronic Lyme.

I’m introducing three new drugs to the existing two.

That’s a lot of drugs…

And there’s a super-duper new restricted diet to go with that.

I don’t know why that should bother me.  I’ve spent thirty years following various diet plans, supplement and medicine plans and assorted other ‘get-me-well’ protocols. It’s not like I’ve gone from a normal life to this strangeness. This ‘strangeness’ is my normal!

I even have a helpful letter from one of my doctors, that I must use to release myself from a program I am now unable to complete.  I had to open the letter so I could fax it off to the recipient.  My doctor’s final words caught me by surprise, “her prognosis is guarded: I do not anticipate any form of recovery in the next twelve months. This is a most regrettable situation.”

Regrettable?  Yes, I guess it is.  And he makes me sound so sick.

Oh wait. That’s right.  I am.

I’ve been mostly coping okay, and I’m sure that after a bit more sleep I’ll be fine. But tonight, as my skin itches as if I’m being bitten by a thousand angry ants, as my left eye throbs and pulses from the bacteria inflaming my optic nerve, as my joins swell and pain, my head pounding, my ears burning, my gut a tortured length of misery, I am sitting in overwhelm.

I just want to howl.

I can imagine the wild dogs tonight, back at my farm, full voiced as they scream their collective angst and passion and solidarity to the sky.

I wish that I could join them.  The howl’s just there.  A primal thing pressuring the back of my throat.

But the neighbours in this respectable Brisbane suburb might think it strange to see a pyjama clad, tear-streaked woman howling her pain and frustration to the heavens. They’d probably call the police.

If I feel into this unvoiced howl though, if I lose myself to the pain, something comforting happens. Beyond the suffering and the infinite sadness at the loss of so much of my life to this damned thing, I find a strength. If I keep feeling into the howl I find a kinship.

I belong to a kind of fellowship, its members bound through the most primal and visceral of suffering. And I know something powerful about this membership – it transforms you.

Through this journey of chronic illness and pain I have found beauty, wisdom, courage and kindness. It has opened me up to a depth in myself I would never have otherwise explored.

I lay down on the couch, looking out the leaf-framed window to the silver moon above me. I feel the voices of the wild dogs.  I feel the kinship of the suffering on whom this same moon shines.

I am comforted. I am connected.  And I know it’s already okay.  I am okay.  I will be okay.

So I’ll keep gazing at the moon, bathe in her light, and wait for sleep to claim me.

Namaste ♥ xx

Image by Jess Newman

Image by Jesse Newman

Diagnosis – Lyme Disease

‘All delays are dangerous in war.’ ~ John Dryden

There’s a war going on in my body.  In fact it’s been going on for a quarter of a century.  First there came the enemy invasion. There was no loud and obvious display of force. Instead it was an invasion by stealth. A mass of tiny bacteria, regurgitated from the stomach of a tick, entered my body via its bite.  My body fought back, and it’s been fighting ever since, but this is a war where the odds for victory aren’t high, and decrease resoundingly over time.

Amazingly, I recorded a tick bite in my sister’s school diary in August 1984, and actually taped the tick to the page! (Why would I do that?) A short while later I was diagnosed with German Measles, but looking back I am sure my rash was tick related, and anyway I had already had measles, and at the time no one else at home or school became sick. I was sixteen years old; bright, ambitious and high-achieving. Sadly, that was all about to change.

For some reason Simone remembered and dug the book out, all these years later…

TickInDiary5

Oh my goodness what a rough road it’s been since then.

My recent diagnosis after years of chronic illness is end-stage lyme disease with heart and neurological complications. I first received a clinical diagnosis of lyme weeks ago, based on my medical history and symptoms.  But I have come to distrust diagnoses – I’ve had so many, and been so disappointed when I’ve not been able to be healed of these things, or the diagnosis has later proven to be wrong. Then, two days ago, I received lab results that made the diagnosis definitive for me.  I finally have a piece of paper I can hold in my hands, reassuring me this whole thing is most definitely not my imagination.

It’s not a great diagnosis. There is much collateral damage after such a long time with this war raging within me. My results list brain lesions, advanced Hashimoto’s thyroiditis, lyme carditis and dilated cardiomyopathy, a weird undiagnosable multi-drug resistant gut parasite, severe adrenal fatigue, almost zero DHEA or cortisol or other good hormones, tumors on my ovaries, enormous uterine fibroids, lots of deficiencies due to malabsorption issues, and in fact I could go on. It’s a long and very depressing list, and the catalyst for it all is Lyme…

Here’s my brain in 2000. It’s much worse since then. In fact, I stopped getting SPECT scans because they became more and more depressing.  There is nothing quite like watching your brain get hole-y and feeling your cognitive function slide. Luckily I had a genius IQ to start with (seriously – LOL) so I had a little more up my sleeve, or at least that’s what I keep telling myself!

SPECT Scan A

I have fought for a diagnosis for a long time, and I’ve had many. Included in the list have been Chronic Fatigue Syndrome, Ross River Fever, Q fever, multiple chemical sensitivity, ME, Fibromylagia, Post Viral Syndrome, rheumatoid arthritis, lupus and multiple sclerosis (both later recanted), Bell’s Palsy, Guillain Barre, Acquired Brain Injury (I love this one – it sounds like I went down to the shop and just ‘picked one up’…), depression, non-specific auto-immune disorder, mitochondrial disease, endometriosis (but my gynacologist can only ever find gross inflammation, NOT endometriosis affected tisssue), and recently ideopathic dilated cardiomyopathy and congestive heart failure..

I’ve also been told over the years that this is all in my head, and that my condition is psychiatric. That’s done so much damage.  I doubt everything that happens. I blow off the worst of symptoms and take ages to act on new health problems. After complaining of severe chest pain on many occasions to my general practitioner, I was told it was stress related, given a script for ‘something to relax me’ and advised to ‘learn to meditate’. It was recorded in my chart that I was a hypochondriac two days before I was hospitalised with a major heart attack.

I always knew there was something VERY wrong, but it has been so hard to find doctors who would take me seriously, or who could manage me on an ongoing basis.  I’ve seen so many specialists and natural therapists, I’ve spent hundreds of thousands of dollars on my health, and it is still my greatest ongoing expense. I’ve done everything you can possibly imagine in my quest to be healthy, but it’s never worked completely, and I’ve never achieved wellness.

Past life regressions?  Done. Faith healers, reiki masters, and psychic healers? I’ve seen the best. Diet?  I have tried and complied for YEARS with many, including being a raw food vegan, fasting, a macrobiotic vegetarian, an elimination and anti-candida low allergy diet, food combining, paleo, body ecology and a few other weird and wonderful ones.  I even drank my own wee!

I’ve IV chelated until I whimpered with pain at every session and vowed I would rather die than do one more treatment. I’ve detoxed and sauna’d, had my blood removed from my body and passed through ultraviolet light before being pumped back in again, I’ve done health retreats, hypobaric chambers, hormone therapy, psychology, psychiatry (they said my problem was physical and send me to an infectious diseases specialist), seen a geneticist, cardiologist, immunologist, gynecologist, ear nose and throat specialist, rheumatologist, environmental medicine specialist, and many other wholistic doctors and clinics. I’ve tried EVERY form of natural and complimentary therapy, and most of the multi-level marketing pills, potions and lotions.  I’ve also used vega machines, biofeedback, Hulda Clarke’s zapper machine and held onto electric fences in fits of inspired desperation after reading about farmers who had cured themselves of Ross River Fever doing the same thing…

I still use homeopathy, meditation, acupuncture, chinese and western herbs, nutritional supplements, chi gung, diet, chiropractic and prayer. In fact, I am convinced that my twice-daily meditation and visualisation sessions have saved my life and maintained my ability to function.

Over time I have become very good at managing my condition, and keeping things in a crazy kind of semi-balanced state. But if I’m honest it’s not living. It’s existing.  Existing with good bits and gratitude, yes, but I have been robbed of so much. So many years and opportunities I will never get back.

There is an upside, of course. I have gone deep within. I have done more work on myself than I ever would have, had I not walked this path. When everything else failed, I have always had my psychic ability and my spiritual connection. It is the one thing that allows me to say I wouldn’t trade this if this is the gift I received in exchange. But it’s a gift that isn’t very useful if I’m dead, which is the way I was recently heading.

So, now I have a diagnosis, what next?

One doc says it’s manageable but not fixable, one doc says it’s sort of treatable although he is not hopeful of a positive long-term outcome this late in the game, and one doc says to me I have drugs for the bacteria, and they’ll make you sick, but they might make you well – what do you think, Nicole?

I said ‘Give me drugs. Give me all the drugs. Cos I’m gonna kill all the things!’

kill all the things

In my long war I have used everything else, and it has all helped. But I have never used targeted antibiotics, anitparasitics and anti-microbials. So now I have a fistful of scripts and I shall rattle like a maraca but it’s something. And I am hopeful. Hopeful I can mend my heart and my brain.  Hopeful that my future here is not only a long one, but one with a better quality of life.

I’ll keep you posted. And I may spend a little more time blogging health things and wellness things, in with my usual mix of stuff. Over the past 25 years I’ve learned so much about health that has aided my journey. Perhaps some it will be useful to you too.

If I have one message for you out of all of this, it’s this: Back yourself.  Trust yourself.  We always know deep down, when something isn’t right.  Don’t ever give up looking for answers. Don’t ever give up expecting that you can have a better life.

Much love to you, Nicole ♥ xoxo

Some useful links:

Lyme Disease Association of Australia

Karl McManus Foundation Australia

Lyme Disease Association, Inc United States

The Canadian Lyme Disease Foundation