Apprehension

Image by SeveIV at www.seveiv.deviantart.com

Image ‘Train Tracks’ by SeveIV at www.seveiv.deviantart.com

“You should have seen this coming,’ they said. I did see it coming. I saw it coming the way you see a train coming when you’re tied to the tracks.”
~ Margaret Andrews

 

I’ve been awake since I don’t know when.

No, that’s not true.

2.36am.

I lay awake in the dark for a long while, willing myself to turn over and go back to sleep. But I was wide awake.

 

I thought about the doctor I will see today. I’ve seen him several times over the past twenty or so years. I thought about him sleeping, and hoped that he was sleeping well and deeply, untroubled by anything.

I wondered if he realised how many of his patients lay awake at night, apprehensive and counting the hours until their appointment. Then I hoped he never thought about it at all. How difficult it would be to labour under such thoughts.

My mind wouldn’t stop. I couldn’t steer it off topic for more than a few minutes. Slowly, dawn approached. My appointment is still hours away. No more sleep for me.

I got up early. I meditated. I sat down to write this blog.

Still, my thoughts are a jumble of worries.

 

Pointless, really.

I will see my doctor. I will get my test results. We will chart a path. I will walk the path.

The part of me that is the wise and coping part tells me I am okay, and that I’ll be okay.

The worried part of me snaps back, “Shut up!”

Which makes me laugh. Eventually.

I am okay, and I will be okay.

Worry never solved anything, nor made time pass more easily.

I’ll have a cup of tea instead. I’ll tidy something. I’ll wait for Ben and Cafe Dog to wake up so that we can have a lovely distracting outing.

And even so, I’ll keep on quietly worrying.

Nx

 

Rain, Words and Silence

Bohdi

“A poem begins as a lump in the throat, a sense of wrong, a homesickness, a lovesickness.”
~ Robert Frost

 

It was raining in the city. Raining and I couldn’t sleep, my head so full of thoughts and my body so tight with pain.

Now I’m home, home at my farm, it’s sometime before dawn even thinks of pushing her first rays over the horizon, and the dark bowl of sky above me is raining cold bright drops fresh as tears. I’m still not sleeping, but I’m peaceful. The pain hums in my belly and my veins but I can drift away on my thoughts to someplace else, and I’m such a seasoned traveller on this night-train now that it’s no imposition. In its own way it’s liberating. I choose to see it like that, anyway.

The beauty of this sacred morning space is achingly, breathtakingly silence-making. No words can capture the majesty, nor fill the space inside me.

Can a poem be composed entirely of stillness?

 

Inside our little farmhouse Ben and the dogs are sleeping. My mala beads are laced through my fingers still, prayers lingering upon them. The fire crackles and hisses in the quiet as the tiny twigs and branches I have placed on the ashy embers smoke and dance their way to life.

 

All night in my not-sleeping space I’ve been thinking about my memoir. I have carried it with me all of this year, and it’s been more an agony than a labour of love.

In the long quiet rain-filled hours that went before this one I finally understood where it has all gone wrong. There are too many words and not enough space. I made it all too busy so I could hide in the pages like some dark shadow-bird. So that you wouldn’t see me. So that you wouldn’t judge me.

It’s in the quiet moments and the emptiness that all the magic happened. In those places I am stripped bare but I was ashamed for you to see me naked. In these past few hours I came to understand it all differently. If you can truly see me, it’s only because you recognise that same place in you. Why was I so afraid to take you there with me?

 

I’m okay, and I’ll be okay.

And so, my friend, will you.

Sending all my love your way, bejewelled with tiny raindrops bright as tears and the scent of woodsmoke and damp good earth.

Nicole xoxo

 

“Trees are poems the earth writes upon the sky, We fell them down and turn them into paper,
That we may record our emptiness.”
~ Kahlil Gibran

2013-08-19 05.53.50

Requiem For These Passing Moments

“Every one of us is losing something precious to us. Lost opportunities, lost possibilities, feelings we can never get back again. That’s part of what it means to be alive.”
~ Haruki Murakami, Kafka on the Shore

“It all goes away. Eventually, everything goes away.”
~ Elizabeth Gilbert, Eat, Pray, Love

 

Sometimes, life is so exquisitely painful that I can scarcely breathe.

Is it odd then, that I find those moments compellingly beautiful too?

I’m not talking about the human me. Not the me who is down there on the floor sobbing in great ugly gulps, or stumbling endlessly through the paddocks with eyes streaming and a great big hole inside me. Or the me sitting silent, numb from shock and horror.

Not, not that me.

There is another me. An eternal me. A me filled with wisdom and kindness and so much love that if all of that soul energy were to dwell within me I would burst open and be nothing but sparks and flame.

That eternal me sat with me last night and held my hand. As I sat at my kitchen table and wrote, earphones delivering me a steady stream of musical novocaine, tears blurring the screen, the keys, the outside world, I was able to slip into that wise observer me and see how alive I was in my pain. How aware I was of the fragility of life. How humbled and overcome all at once. How connected I was with all other souls in this journey of joy and suffering.

Oh lovelies, this is such a wild and mysterious and crazy ride, this thing we call life.

We are, all of us, okay. Even when we’re not.

Holding you in my prayers and meditations,

Nicole <3 xx

 

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.

 

Breathing Through The Pain #LymeWarrior

A Breath of Freedom by Iladya Portakaloglu

A Breath of Freedom by Iladya Portakaloglu

“Your breathing should flow gracefully, like a river, like a watersnake crossing the water, and not like a chain of rugged mountains or the gallop of a horse. To master our breath is to be in control of our bodies and minds. Each time we find ourselves dispersed and find it difficult to gain control of ourselves by different means, the method of watching the breath should always be used.”
~ Thích Nhất Hạnh, The Miracle of Mindfulness: An Introduction to the Practice of Meditation

 

Pain and I enjoyed a pretty intense relationship when I began my treatment for late stage Lyme disease at the beginning of 2013. My regime, which will last a minimum of three years, involves intense rotational use of various combinations of antibiotics, as well as diet, herbs and a myriad of other support tools. It’s a long road I’m walking, in order to regain wellness.

Recently, things have settled down a little. I’ve had more energy. I’ve been sleeping better. Pain has become an occasional thing rather than a stealer of breath and life-force. I’ve finally begun to feel good on my current meds combo.

That is, of course, until I brought in Drug Number Four.

I’ve slowly built up the intensity of three other kinds of antibiotic, anti-malarial and anti-bacterial that are the drugs on my current rotation. This combination was brutal to begin with, but I’ve reached the stage where I am now handling them well. Part of my treatment plan is to then bring in this fourth drug. It’s one I took earlier this year. It gave me fabulous longer term results, but it created a firestorm within my body while I was on it.

I’d been dreading bringing it back in. But of course I kept up this optimistic patter with myself, “You’ll be right, Nic. It will be heaps easier this time. It’ll be nothing like the last round.” I delayed taking the drugs too, because I wanted to be my best self for my recent retreat. So I took my first tablets on Sunday, seemingly without incident. I worked Monday, took all my drugs and didn’t skip a beat.

Then it hit me. About six pm on Monday night.

Oh God, I’d forgotten how intense the pain could be. That I would feel like I was dying all over again. That it would take all I had to bring my ragged breath back to some semblance of calm. Over, and over, and over again. All day. All night. Without cessation.

Quote from BullyVille

Quote from BullyVille

The good news? I’ll only need to take these drugs two days out of seven. It will get easier. It always does. Eventually. So, I’m breathing, and counting hours and minutes and moments.

I know, from previous experience, that the pain won’t kill me. That knowledge is my secret strength. I can endure this. One day, the pain will end, and I will be stronger, closer to healed, and I’ll have learned more about myself and the world.

It’s Friday today. I managed a few hours sleep last night. Today I’m a little better. Stronger. More determined. Sunday I’ll go Round Two with these drugs. Hopefully next week will be better than this week has been.

But it doesn’t matter. I’ll breathe my way through it. I’m in the killing zone. The bacteria that have made my life a misery are dying, so they can kick and scream all they want on their way out – just as long as they go.

I have things to do. Places to be. Trails to walk. Books to write. A husband who has his whole life on hold while I heal. So I’ll keep staring these squirmy little suckers in the eye until they back down.

Just watch me!

Image from Quoteko.com

Image from Quoteko.com

 

Soundtrack to Pain

Image by LietingaDiena

Image by LietingaDiena

“One good thing about music, when it hits you, you feel no pain.”~ Bob Marley

Music saved my life earlier this week. Music and drugs.

Those of you who follow my blog will know that I am suffering from end-stage Lyme disease. I’ve recently embarked on a protocol of high dose antibiotics, antibacterials, herbs and other healing tools. It’s been tough, but already I have begun to see progress, so I’ve stuck with it. I’m in here for the long haul – a minimum of two years…

I woke just over a week ago, thinking I’d been bitten by a mosquito. The back of my hand itched and burned.  I hauled myself out of bed, sprayed my room with bug spray, and went in search of some lotion for the bite. By the time I found the lotion I had two more bites – one further up the same arm, and one on the other wrist.  Finally I got back into bed, but the burning continued and I kept getting bitten. That was the end of sleep for me, and it was only a little after midnight.

By morning I was in agony. It felt like someone pouring acid on various parts of my skin including the tear duct of my already painful eye, my inner right nostril, and my gum. Nothing was biting me. I was having a severe reaction to Bactrim – one of my antibiotics. I stopped the drug straight away, and expected things would get better. A rash broke out.

Things got worse.

I phoned my doctor, who lives hours from my farm, and they warned me not to take steroids, and to treat with antihistamines. I consulted a local doctor.  They told me that if the pain got too much I was to go to hospital.  At the time, that advice seemed a little extreme.

I tried my best to tough it out. At home I played loud music, and I yelled along to the lyrics.  It helped a little, but I was in agony. I meditated. I took the antihistamines. Along with epsom salts baths. I drank gallons of water with Vitamin C powder, clay and baking soda. Nothing much worked.  The pain intensified.  My ears felt like they would explode in my head.  My eyes became bloodshot and dry, and every blink felt like rubbing sand paper on my eyeballs.

Inside, I raged. My pain was maddening.

Image form www.dezinfo.net

Image from www.dezinfo.net

Music pounded through my house.  Suddenly I understood the benefits of heavy metal. It made sense to me why angry people listen to music with savage base lines and thumping beats. Soothing music irritated the crap out of me. I needed loud, brutal and relentless – something to match my pain levels.

After two sleepless nights we went to the ER.  They wanted to give me steroids.  I couldn’t have steroids. It’s contra-indicated with Lyme, and with my Lyme-induced cardiomyopathy. So we pushed saline, antihistamines and pain killers. It helped marginally.  They offered sedation as a last resort.

I went home and waited for the effects of the Bactrim reaction to wear off.  I never knew you could endure so much pain and still be alive.  All I wanted to do was scream, and I actually did try that but it didn’t help, and to make things worse, my neighbours came over to check I wasn’t being murdered. *peak embarrassment*

I tried distraction therapy – washing dishes, cleaning things – but all that happened was that I became more and more tired, and more and more distressed.  Music was the only thing that helped a little.  I emailed my beautiful Sisters – the writing group who have come to mean so much to me. I let it all hang out; the pain, the frustration, the helplessness. I swore.  A lot. They all advised me to go the sedation route if it helped.

Finally, when I was reduced to a whimpering mess, I decided on sedation.

The drugs knocked me to the edge of oblivion but the pain was still there. And then a kind nurse lent me her ipod.  I can’t tell you what I listened to. Most of the artists were unknown to me.  But I found something extraordinary.  I could ride that music like a wave, and surf over the top of my pain.  The music got right inside me, and it saved my life.

When I finally came home, the burning was down to a dull roar and a maddening itch.  A week later it’s almost gone.  My eyes are still scratchy, and I feel like I have a bad case of sunburn, but that’s manageable.

I’m grateful for modern medicine, kind doctors, caring nurses with awesome music selections and a stoic and endlessly good-tempered and strong husband who has nursed me through one of my worst weeks yet.

I’ve had two reasonably good days (hey, what am I saying – yesterday I got Freshly Pressed!), and fingers crossed today I’ll make it three in a row.

Here’s to the healing power of music.  Music and drugs.  Wow – I never in a million years thought I’d say that and mean it with my whole heart.

My Left Eyeball…

Image from flickr

Image from flickr

“What does not kill me, makes me stronger.”

Friedrich Nietzsche

I had intended a different post for this morning, but I have an eyeball problem. I’ve been on my Lyme drugs, well the first of them anyway, for a month now, and they are doing strange things to me.

All night, apart from the ‘normal’ sensations of insects crawling on my skin, deep stabbing pains in strange places, and nausea, I have had a feeling not unlike someone stabbing my left eyeball with a toasting fork, and then slowly roasting it over a fire.

My left ear is also on fire, and intermittently stabby.  What joy.

I have devised a three point management plan depending on whether this escalates into totally untolerable. Plan A: Right now I’m sitting with a damp warm cloth tied over the offending eyeball, hiding it from the light and trying to reduce my pain. I shall soon lie in a darkened room and hope it goes away. Plan B: If it stays this painful ring Doctor when their rooms open. Plan C: If I can’t stand it, or it gets any worse get a friend to drive me to the hospital.

These Lyme bacteria invade everywhere. Organs, tissues, cells. They colonise and have parties, they multiply and and they invite their friends. Some of these critters have set up home in my eye, and now they’re unhappy because my drugs have found them.

It’s making me quite grumpy.  Quite grumpy indeed. And stubborn.  As I swill this morning’s drugs I have quite the attitude.

“Die, you miserable pathogens, die!” I want to shout.  I am not shouting though.  My eye is sensitive to noise, I think.

Now I shall lie down and dream of being a fearsome female pirate, sailing a Lyme Green Sea, and killing all the things…

Image by www.ops.org

Image by www.ops.org