And then the Storm…

Image from  Japan's Bureau of Meteorology

Image from Japan’s Bureau of Meteorology

“Another secret of the universe: Sometimes pain was like a storm that came out of nowhere. The clearest summer could end in a downpour. Could end in lightning and thunder.”
~ Benjamin Alire Sáenz

 

Sunday was Drug Number Four Day in my current Lyme medication regime. Today is, too. Ever the optimist, I had told myself that this week would be better.

Wrong.

It’s worse.

The Universe is throwing all kind of weather at me, and then some. It’s an every-flavour storm.

There’s a grim kind of humour in that, though, don’t you think?

I’m so side-swiped by pain that I’ve stopped crying and started laughing.

There’s no point cowering in a corner. I’ll meet this thing head on. Today’s glorious experiment? I shall turn pain into some kind of good. I feel so fiercely alive, so bright with the charge of this corrosive force, that I might as well channel it into something.

I’ll keep you posted as to how I go.

 

Status Update – Unavailable

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“For a while” is a phrase whose length can’t be measured. At least by the person who’s waiting.” 
~ Haruki Murakami, South of the Border, West of the Sun

We’re all waiting. Waiting for Nicole to finish this round of drugs.

It’s hard going.

One week, three days to go.

Not that we’re counting…

Meanwhile, Nicole sleeps and dreams of flying with Auntie and the Grandmothers. Spirits whisper in her ear. She’s being shown such interesting things.

When she’s awake Bert tells her all about the food she can cook for dogs this blog. She’s getting a lovely list of meaty dog food recipes kitchen inspirations. Brave Harry keeps her safe from flies, moths and the cows outside the bedroom window.

We promise, normal broadcasting shall resume just as soon as humanly possible.

That is all for now.

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My Sweet Poison

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“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

The ‘No Blog’ Blog…

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“Sometimes even the mind’s greatest resolve is not enough to conquer the body’s own particular requirements. ~ Nicole Cody

Sorry, Lovelies. No blog today. Can’t get out of bed, nor lift my head and everything hurts. Agonisingly so.

Thank goodness for my iPad.

Still, I am steadfast in walking this path and in my mind the path is not something ugly. It is a path that leads to a beautiful place, and although I am weary to the bone and low in spirit I am on the path and I trust it will lead me somewhere better than here.

Let’s meet back here tomorrow and perhaps I will have turned a corner.

Much love to you xoxo

Sailing the Lyme Green Sea

“To reach a port we must set sail –
Sail, not tie at anchor
Sail, not drift.” 
~ Franklin D. Roosevelt

 

Hello, Lovelies! This morning I am reminded that I am still out on a wide green sea in my tiny boat, and that occasionally the weather shall be rough. That is the nature of treating late-stage Lyme disease, and I knew when I set sail that the journey would be a long one.

This time, hopefully, it’s only a little hiccup of a storm. It seems I have already travelled through the worst of it in the past twenty-four hours.

I have my map, my compass, and some wonderful travelling companions. I shall be just fine. All I need to do is hang on tight and weather this out.

Safe sailing for you too today, not matter what your journey.

Big hugs and love, Nicole xx

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Stormclouds, Music and Melancholy

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“When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.” 
~ Haruki Murakami, Kafka on the Shore

 

The air is tinged with cold and that strange electricity that comes before a storm. I am watching from my upstairs bedroom, stuck in the city and longing for home.

The new meds I am on to treat the lyme and other bacteria are having brutal effect these past few days.  Seems I have my own storm raging inside me.

I am wracked with fever and with pain. My eyes are fogged and my brain has turned to cotton wool.

It’s hard to type. Hard to think. Hard to read.

So I am mostly lying here, watching the sky and listening to music.

And somehow, there is so much beauty here.

I am profoundly grateful for my life.

 

What May Come

“Fate is never fair. You are caught in a current much stronger than you are; struggle against it and you’ll drown not just yourself but those who try to save you. Swim with it, and you’ll survive.” 
~ Cassandra Clare, City of Ashes

 

 

This morning I have gained perspective.

It’s not much, but it’s something.

Today my head’s above water, I can breathe, and I am no longer in a state of panic.

 

Have you ever had a time in your life where it’s just one thing after another?

Right now, my friend, I’m there.

I’m caught up in the current and there’s no chance of getting my feet on solid ground any time soon.

It’s all due to Lyme Disease.

Sunday I herxed so badly from my treatment that I ended up having seizures.  On top of all the other pain. On top of all the other agonies.  My cranial nerve became inflamed and I lost the ability to think and speak clearly. My eye puffed up like a toad. I stuttered and stammered and finally ached my way into an exhausted sleep.

Yesterday it was off to the doctors for more tests, more scans, and eventually, more bad news. Some of it completely unexpected.  You know how it is when you’re so busy fighting the fire in front of you that you completely miss the raging inferno just over your shoulder.  Yesterday I felt like I just couldn’t take a trick. I was completely overwhelmed. I wondered how I was going to do this.  I had no idea how I could cope.

The truth is, the bacteria that have been colonising my body for nearly thirty years have wreaked havoc.  Today I can hold the pictures in my hands of the battlefield that is my body.

These bacteria have been waging war in me for a long time, and its shows. They’ve done damage to my endocrine system, my neurological function, my heart.  They’ve damaged my kidneys, my gallbladder, my liver. They are in my bones, my cells, my organs, my fatty tissues, my brain.

As a result I need major surgery.  That wasn’t on my current list of things I have to cope with.

We fled the city and came home to our little farm last night so I could get some breathing space.  I sat on the veranda sipping tea in the cool night air and talking to the owls. And finally I went to bed, and had my first full night’s sleep in ages.

barn owl

Now morning is here again.

I’m back to feeling like I can do this after the momentary horror of the past few days.  In fact, today I’m even going to do some work – which I am very much looking forward to!

Okay, maybe I’m limping and lurching and none too graceful, but hey – I’m still in the game.

Doctors are finally taking me seriously.  They have to.  My body’s a mess and the evidence is right in front of them, in my bloods and my scans.

Please don’t be telling me that all I need right now is to adjust my attitude, pray, eat greens or some magical network marketing product, speak to the right Angel or clear my old emotions.

I’ve been doing that for years.  And you know what – it has had a very positive affect.  I’m still alive and functioning, when I should be long dead.  My pain levels are tolerable when I should have jumped off a bridge by now.

People, there is a war going on inside me.  And instead of peaceful resistance, or allowing this hostile occupation, I am now aggressively defending my boundaries. The drugs and herbs I’m taking are making me feel awful, at times worse than dying, but I have proof that they are working. Right now, I’m using everything at my disposal.  It’s down to the wire for me, and I’m not ready to give up just yet.

I need surgery.  Sooner rather than later.

Well, sometimes that’s what has to happen.

Surgeons and doctors have an important place in the world, and I’m a bit over people with their New Age fundamentalist philosophies telling me that I can’t trust the medical profession and all I need to do is work on myself or see some energy healer.

Honestly. I’ve tried all that anyway, and I think it rocks (hello, I’m a practicing psychic for goodness sakes) but…  that is such a limited and medieval view of the world.

I will take each day as it comes.  I will use the many conventional and alternative choices available to me.

I will accept that for now my feet won’t be touching solid ground for a while, and that I must go with the flow. (There – how much more New Age can you get? 🙂  )

If I can’t swim, I can float. I can give in to the current and see where it will take me.

If I relax, I can even muster a little optimism and a curiosity for what may come.

I’m doing my best to stay open, to live from my heart and find something beautiful in every single day.  And you know what?  If I don’t get caught up in my head, if I don’t lose myself to fear, it’s not so hard to do…

There are rich blessings in this journey.  And so much to be grateful for.  It’s all a matter of perspective.