A Little Nicole Update

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“People who want a cure, provided they can have it without pain, are like those who favour progress, provided they can have it without change.”
~ Anthony de Mello

 

So, here I am, still in hospital.

There have been a few little bumps in the road, including a massive resurgence of lyme symptoms and herxing, post-operation, as I was filled with what seemed like enough antibiotics and other drugs to treat an entire small pox-ridden and hurting country. My poor body has endured a bit of a rough ride. I’m bruised and bloated and scarred and bandaged. Wings of my hair have literally gone white overnight. It’s oddly fascinating.

As well as my four-hour surgery, I have needed to deal with unexpected bladder problems and surgery, lyme-induced loss of vision in my left eye, loss of balance, light sensitivity, bone and nerve pain, raging insomnia and terrible constipation and nausea from my pain meds.

And still, my doctors are pleased with my progress and I am healing well.

Between the pain, the constant intrusion of nurses doing observations, and the insomnia, that’s a lot of time awake. That’s a lot of time unable to be filled with television or books or iPad games or writing thanks to my dodgy eye. (I am writing this with a 200% screen magnification and one eye resolutely screwed closed. It’s taken me about fifteen spurts of energy and then rests to get all of this written; not my usual efficiency – but these are unusual circumstances.)

What can you do when you are in pain and unable to use external distractions? When you want to be able to work on your book but you can’t see to read the words?

I can happily report that I have spent most of the past eight days back in the Kimberley, with my Aboriginal Aunties. Using my imagination and memories as a portal I have returned again and again to the places and people so dear to me, and that form the backbone of my memoir.

I have sat with the late night silence and the loneliness, and spun them into a ladder to elevate me beyond my pain.

I have practiced deep listening.

I have meditated, and I have prayed.

I’ve also time-travelled back into myself. The hours between eleven pm and four am seem well-suited to reflection and analysis of my life. I’ve dug deep into places I had long covered over. What did I really feel? Why did I really make one choice over another? What emotions were in my body? Where was my head? I’ve strung the answers like beads on a mala, knowing that as I hold each one when I am able to come back to my writing I will remember, and that this new understanding will better inform my work. I’ve come to a more honest place. A kinder place. There has been much forgiveness this past week, of myself and others. My stay in hospital has gifted me clarity, and a way forward, finally, to be able to finish this book of mine, and get it ready to send out into the world.

The other thing I have done is gather life stories and vignettes; stories about the nurses and their lives, stories from cleaners and room service tray attendants, from the other patients who are limping slow laps of the ward as they push their drip stands or lug their wound drainage bags and catheter bags, tales from ward orderlies and the lady who brings the morning newspapers. People are endlessly fascinating to me, and their shared stories remind me that we are so alike in our differing journeys and struggles.

For we all face struggles. That is the nature of life. If it’s not one thing, it’s something else.

Even so, it’s a beautiful journey, life. I’m very grateful for mine.

Things will be back to normal, little by little, here on the blog and in my everyday world. I’m okay with things needing to be slow. Slow is all I can do for now.

I’ll swing by here again just as soon as I’m able.

Hugs and love, Nicole <3 xx

 

 

Lyme Eyes, Magic Eyes

“The eye through which I see God is the same eye through which God sees me; my eye and God’s eye are one eye, one seeing, one knowing, one love.”
~ Meister Eckhart, Sermons of Meister Eckhart

 

If you’ve read my blog for a while you’ll know:

a) that I have Lyme disease

b) that Lyme bacteria in my optic nerve wreak merry havoc

c) that I am psychic.

I’ve had some ongoing issues with my eyes since beginning treatment for Lyme. There’s been pain. Lots of pain. Vision disturbance. Vision loss. Nystagmus. Some of it is related to my optic nerve. Some of it is neurological. Some of it is herxing. No matter the cause – Ow!

But the past few days there’s been something new.

Out of the corner of my eye I have seen darting shapes – wispy, thin, undefined shapes.

At first I wrote them off as being a Lyme issue, and didn’t pay them much attention. Today I’ve changed my opinion.

As I sat in the garden with Harry Dog after my meditation, my eye was caught by yet another darting shape. As I looked at it, the shape stopped for a moment.

Harry saw it too.

Image from forargyll.com

Image from forargyll.com

And then I realised I had seen it this time with my ‘good’ eye first.

So now I’m not so dismissive of this whole latest ‘seeing things’ thing. After all. I’m psychic. I woke up on my thirtieth birthday and I could see auras. I work as a medical intuitive and ‘see’ things within and around the body.

I’m not quite sure what’s catching my eye yet, but I’m quietly excited to see what develops from here.

I promise to keep you posted!

 

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

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

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.

 

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

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

Well, that was a bit premature…

ME_113_Patience

“Patience is the calm acceptance that things can happen in a different order than the one you have in mind.” 
~ David G. Allen

I was kind of hoping to be sleeping right now. It’s 2am, and I was only fretfully sleeping at best between 8 and 11pm. Now I’m wide awake and I know the rest of the night is going to be a horror.

So I might as well blog.

I’m still herxing. My hopeful post yesterday about waking up and being done (yay? 🙁 ) was all just a little premature. What I actually experienced was a lull before Cyclone Lyme returned for a little more devastation.

Let’s just say I’m not having fun.

This disease (and like most Lyme sufferers I have several co-infections rather than simply one nemesis) is certainly teaching me patience.

I have all this stuff I want to do. I have all this stuff I’d planned to do. And of course those plans have all gone out the window.

After I sleep next I might wake up and this will be behind me. After I sleep next I might wake up and still be deep in herxing land. The only thing I can do is go with it, be patient, and know that eventually this crazy ride will come to an end.

ride-the-wind

You can’t do anything useful while you’re herxing. As the bacteria are dying, sending endotoxins into your system faster than your body can clear them, you end up with a cascading inflammatory effect that plays havoc with your system.

Right now my symptoms include nausea, vomiting and diarrhoea, puffy streaming eyes and nose, chest pain, nerve pain, joint pain, abdominal pain, impaired balance, itchy skin as though I am being bitten by ants, fevers and night sweats, headaches, random stabbing pains, swollen glands and raw throat. The one happy thought is that prior to today my mind was also on vacation – everything felt as if I was thinking through cotton wool. Now my mind is bright and clear. It’s just the rest of me that isn’t playing nice.

I’m okay with the process though. If this is how I heal, then I can roll with it. I have an arsenal of herbs and activated charcoal and zeolites and other great feel-better tricks in my tool kit. I have terrific doctors and natural therapists. I have enough Epsom Salts to start my own bath salts company. I have crystals to clutch and aromatherapy to sniff. I have a veranda where I can sit in the dark and talk to the owls. A whole farm where I can howl at the moon. The hospital is a short ride away, should I need it. My husband is asleep in the next room, and Harry the hound is sleeping on my feet, keeping me company while Bert sleeps in the space I vacated. I’m so grateful not to be alone and going through this, as too many people are.

I’m so grateful to be having a massive herx NOW and not when I’ve been working, and not when I’m on retreat. It’s actually pretty good timing, all things considered.

Anyway, it only feels like dying. Having looked at that end-of-your-life place from far too close, I KNOW that this shitty space I’m in right now is worth it. Life is worth it. Health is worth it.

Every time I have a massive herx like this, I end up with an equally massive shift in my health and I climb further back out of this hell-hole that has been my life for the past thirty years.

I really did try to make the best of that hole. I wallpapered and made it pretty, installed a comfy couch, put positive affirmations on the walls, surrounded myself with uplifting things. But it was still a hole. And each year it got a little deeper, and the sunshine seemed a little further away.

Looking back at me, a year ago, I can see how far I have already come. A year ago I was dying. There seemed to be no path forward other than faith, and trust me, that was thin on the ground.

Now I’m making real progress. On a non-herxy day I have a brain that works, a heart that behaves, better bloods, more energy, the ability to walk, talk and breathe all at the same time. My prognosis is good. I’m writing again. I’m working again. I have my life back.

All I need to do is stick with the treatment, put up with the herxes, and hang in there. I’m getting better. I have tangible proof of that.

By the time you read this, with any luck I shall be asleep. Fingers crossed, hey?

If I could leave you with one thought, it would be this: Don’t give up. You never know how close you are to a major breakthrough.

Wishing you your own breakthroughs, synchronicities, answers and miracles today. Bless ♥ xx

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Sorry, I didn’t Blog!

Vintage Fuzzy Felt Hospital by I Heart Vintage

Vintage Fuzzy Felt Hospital by I Heart Vintage

“My head aches, my eyes burn, my arms and legs have given up, and my face in the mirror has a grayish cast. The bed, across the room, calls in its unmistakable lover’s croon, Come to me, come, only I can make you truly happy, oh, how happy I’ll make you, don’t resist, remember how you moan with pleasure the instant we touch…..”
~ Lynne Sharon Schwartz, Fatigue Artist

It had to happen.

I’ve been travelling so well these past weeks. Feeling almost normal, almost human, almost well.

And then I began to herx. That thing Lyme sufferers do when the bacteria inside you die off with a flourish, dumping toxins and misery into your systems.

Herxing is a good thing – it means that all of these wretched pathogens are being slaughtered by my heavy-duty drug regime and shall bother me no more. Once I get past their death throes…

So I went to bed on Saturday afternoon, and am only emerging now, on Monday (hahaha, have just been pointed out that I’ve missed a whole extra day!) Tuesday morning after a fever-soaked delirious haze of agony. I’m wrung out and I feel like I’ve been run over by a bulldozer, but weirdly, I’m happy.

My mind is clear, and I can feel a huge shift. I’m crossing off more of that Lyme Load on my return to health. And I’m ready for a drug re-adjustment, which shall happen at my doctors’ meeting next Monday.

We’ll return to normal blogging tomorrow. Right now, I’m taking my cup of tea and going back to bed.

Much love to you all, Nicole xx

Crossing off pathogens! - Image from Zooner

Crossing off pathogens! – Image from Zoonar

Taking a Dose of my Own Medicine

Lyme Medicine – Image by getty/altrendo images

“Always laugh when you can. It is cheap medicine.”
~ Lord Byron

It’s ironic that the day after posting about my progress yesterday I found myself back in herxing land. Herxing is a side effect of the lyme bacteria inside me dying off and releasing their toxins as a parting gift.

I haven’t felt this dreadful for a while.

I remind myself that this fever, these aching ears, these swollen glands and runny lopsided eyes, these weird pains and sleeplessness are all good. It’s another sign of progress, even if it doesn’t look very sexy or feel very awesome.

That’s the way it is when we’re committed to something for the long haul. It doesn’t matter what it is; making a marriage work, raising kids, running a business, writing a book, sticking to a fitness program, completing a PhD. There’s going to be down swings. Nothing is all puppy dogs and roses and magical unicorns.

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Most things worth having or achieving in life require require work. And sometimes that work will have us down in the pit – shabby, exhausted, cranky and NOT HAVING FUN, but still plodding on, or gritting our teeth and just getting through any way we can.

Who hasn’t been sore after a big session at the gym? Who wasn’t exhausted when their kids were newborns or teething? Who didn’t feel resentful when the weekend rolled around and you were stuck at your desk working or studying while everyone else was out having fun? Who hasn’t argued with someone they love dearly? Who didn’t freak out when they left the security of a job or a relationship to start out on their own?

When we commit to something and stick with it, we build this muscle called resilience. As we ride out the bumps, and push ourselves through the tough bits we change and grow. We build character and inner strength. We learn to depend on ourselves, and we find out what we’re made of.

Of course it helps to stay motivated, and to remind yourself of why you’re doing this thing. And it also helps to remind yourself how far you’ve come.

Remember: Remind yourself it will be worth it!

Today I am reading back over my progress, and reassuring myself that days like this are becoming fewer, and my goal is on a horizon I can actually see now, rather than some mythic far-off land which may or may not exist. I’m schlurping up a spoonful of tough-it-out and another of things-are-actually-measurably-better. I’m already feeling better than I did yesterday!

And I’m sending all my love to those of you who are down in the trenches. Take heart. You can do this thing! All power to you. ♥  Nicole xx

PS – I wish I could buy my medicine here…

Happy Pills -mCoolest Lolly Shop ever. Barcelona, Spain. Image by Scott Andseren

Happy Pills – Coolest Lolly Shop ever. Barcelona, Spain. Image by Scott Anderson