Talking to Dragons

“Always speak politely to an enraged dragon.”
~ Steven Brust, Jhereg

 

It’s after 3am. An odd time to be posting a blog. Still. I’m wide awake.

I might as well stay up now so that I can do my morning meditate soon, as is my daily practice.

It’s been one of those nights. The kind of night I’ve not had for a while. I guess Lyme wanted to remind me…

So I’ve lain awake all night, staring at the ceiling, roaming the house, trying whatever remedies I have to tame this pain beast. My body aches. Electricity arches down my limbs, and stabs behind my eyes. It feels as if someone has lodged an ice-pick in my skull and is twisting it violently. Random pain assails me. But it’s okay. I am becoming quite skilled as a Lyme Dragon Whisperer.

I’ve not quite got the dosage right on my latest drugs and herbs yet. Which include, of course, the dreaded Drug Number Four. Once again it’s giving me grief, and yet I know that the pain is bacteria dying, so I’m celebrating even as I want to scream. (I won’t though – too dramatic and it will wake Ben and the dogs!)

I’m hoping to slip back to bed after my meditation. I’m hoping that the meditation will take enough of an edge off, and combined with my massive exhaustion I’ll just fall right asleep.

Fingers crossed, hey?

Meanwhile I’m going to fly the night sky, and send you all some healing. I might as well be useful for something. Anyway, when I’m in that meditation place I am free of my body and its limitations. The pain is gone. It gives delicious respite.

Okay. I’m ready now.

I’ll see you in your dreams. Know that you are loved. xoxo

Image by Mike Rae

Image by Mike Rae

My Day’s Best Medicine

Image from BourilDesign.net

Image from BourilDesign.net

“Always laugh when you can, it is cheap medicine.”
~ George Gordon Byron

 

There is one thing Lyme has taught me that is well worth sharing. Some of the best medicine isn’t prescribed by a doctor.

Here’s some of my favourite medicine.

The smell of pine trees and sunshine.

2014-12-09 08.13.57Posies of sweet little flowers from the garden.

2014-12-07 09.22.40-2The promise of rain on the wind.

2014-11-25 17.50.57Company, love and cuddles, and a soft bed with clean sheets.

2014-07-23 16.20.12Homemade ginger kombucha in my favourite ballerina glass.

2014-05-16 10.33.18Nurse Bert, the ever faithful hound, keeping me company even when it would be more fun to be outside chasing cows or going on farm exploration adventures with Harry.

2014-01-27 20.23.30Good books, sun-bright mornings, the smell of the ocean, music, wind in the trees, friendship, kindness, meditation, the softness of nightfall, cups of tea, moonlight, laughter, afternoon naps, love.

All of these things help heal me.

Maybe they will work magic for you too.

Thinking of you and sending love, Nicole xx

l

PS: Here’s a lovely song about letting things be the way they are, from the inimitable Tim Minchin.

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!

20140510-175237

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

My Early Christmas Present

Image from securinvest

Image from securinvest

“I wandered everywhere, through cities and countries wide. And everywhere I went, the world was on my side.”
~ Roman Payne, Rooftop Soliloquy

 

Monday was my day off. A day to rest, sandwiched between two days of psychic work on either side. I am in Brisbane right now, and the plan was that Ben would be here and we would spend the day together, doing a little running around before I napped the rest of the day away.

But Ben needed to race back to the farm in the middle of the weekend heatwave, when a neighbour told us there was a problem with our water pump. And Monday morning Harry got injured in his fight with the stick and spent the day at the vet’s down near our farm, so I was stuck in Brisbane on my own.

Doesn’t sound very exciting, does it? And yet, on that day, with me stuck in suburbia, miracles happened.

I know it won’t sound very miraculous to you, but let me explain.

On Monday there were bills that needed to be paid, and forms that needed to be posted. I’d expected Ben would be there to help me, but he was busying helping Harry. Doing those chores suddenly fell to me. ‘Only if you’re well enough,’ Ben said. ‘We’ll work something out if you can’t do it.’

It needed to be done, so I did what any normal person would do. I got in the car and drove to Chermside – a nearby sprawling suburban shopping-mall.

Image by Jeff Camden

Image by Jeff Camden

 

I haven’t really driven very much for quite a while now. In fact I’ve driven only half a dozen times this year after two years of no driving at all. Lyme disease has robbed me of so much independence, and until recently congestive heart failure had made me unsafe behind the wheel. Even now I have a strong startle reflex and slow other reflexes. It takes all my concentration to drive, and it’s usually very stressful.

But Monday I was feeling stronger. Clearer. I got in the car and off I went, determined to get those jobs done.

At the shopping mall I found an easy park, and my tasks were completed in less than fifteen minutes.

I was just about to get in the car and go home when I realised…

I was out shopping ON MY OWN for the first time in five years.

For five years my darling husband has been at my side for every outing. This was the first time I’d had the chance to do a little Christmas Shopping on my own, without him right beside me.

Oh, the luxury of it all.

I stopped at a little cafe, the sort of place Ben would never go, and enjoyed some lunch while drafting up a list of things I’d like to buy. And then off I went, to look at shops that appealed to me.

I lingered at a place which sold aftershave and perfumes.

I dallied at a tea shop, smelling and tasting different blends and talking tea with the wonderfully informative staff.

I dawdled in a bookshop. At a toy store. At a supermarket.

All in all I spent nearly two hours out on my own.

It tasted like freedom. I had the best time!

On the way home, still feeling good, I called in at a friend’s house and we sat in her back yard and worked on my new website.

2014-11-17 17.39.10

That night, while I was waiting for Harry and Ben to come home I wrapped my stash of gifts and marvelled at how independent and outrageously liberated I was feeling.

Those wrapped gifts represent something profoundly significant to me.

My own little Christmas Miracle.

A returning wellness!

2014-11-19 04.35.33

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?

2014-08-05 08.26.42

 

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