Two Steps Back

Image from tumblr

Image from tumblr

Don’t ever give up.
Don’t ever give in.
Don’t ever stop trying.
Don’t ever sell out.
And if you find yourself succumbing to one of the above for a brief moment,
pick yourself up, brush yourself off, whisper a prayer, and start where you left off.
But never, ever, ever give up.
~ Richelle E. Goodrich

 

It had to happen.

I’m on new treatment. We’re working on my detox pathways, and some brain rewiring and rehab before I hit the lyme drugs again for another round. Both my doc and I are new at some of this – both the treatment modes, and the regimes. They’ve been tried and tested by other doctors, with other patients, and their positive results have spurred us to try the same. (In my 30 plus years as a Lymie I’ve been a guinea pig for lots of stuff – desperation and a sense of the curious will do that to you.)

On the plus side for this new regime? We know it works. I’m getting noticeable results.

On the not-so-plus side?

Too strong. Too fast. Because of that I’ve gone backwards a little. A temporary thing. My poor old brain has been overstimulated, and my detox pathways are not coping with the load. So there have been some unpleasant side effects.  Headaches. Ramped up pain. Small seizures. Temporary loss of vision in my troublesome left eye (neurological rather than an actual eye issue). Disrupted sleep patterns. Mega brain fog and exhaustion. Slurry speech.

Thinking is hard. Problem solving stresses me out. Or else I look inside my brain for an answer and there is nothing…

Image from cheezburger.com

Image from cheezburger.com

I got properly checked out, and I’m fine. I just need to rest. Rest some more. Cut back my program. Drink lots of water. Did I mention rest and avoiding stimulation?

Soon as I’m feeling better we’ll try again, more gently this time.

So I’m going to step away from blogging for a few days so I can have a proper no-pressure break.

At least I got to enjoy a semi-normal weekend just a few days ago. Moments like those are gold. They show me that everything I’m doing is worth it, even the less-than-fun spaces like the one I’m in right now. I’m miles ahead of where I was this time last year. It feels like a different life, that me of a few years ago where I was dying and every day was a miserable struggle.

A setback is just that. A setback. It’s only a failure if I stop trying. Anyway, if I’d quit when the going got tough I’d have died years ago. 🙂

This round of treatment has been a valuable learning experience about what not to do. Next round, I’ll do better!

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

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

Two Steps Forward…

 

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“Progress, of the best kind, is comparatively slow. Great results cannot be achieved at once; and we must be satisfied to advance in life as we walk, step by step.” ~ Samuel Smiles

 

It’s been a frustrating few days for me.

I’ve recently changed Lyme doctors, and begun a new regime of drugs and herbs for my Lyme and co-infections. I’m filled with optimism for my return to health, and although I’m tired it had all been going well until the tail end of Monday.

I’d taken the first dose of a new drug that morning, and been fine.

But suddenly on late Monday afternoon my speech began to slur, words vanished from my brain, my eyes blurred until I could not see at all, I walked like a drunk woman and I forgot how to do the simplest tasks, like cleaning my teeth. My night was filled with hallucinations. I was sure that lizards (Lizards? Oh, Nicole!) were hiding in the bedclothes and coming out to bite me when the lights were out. Of course there were no lizards, just the sting in my nerves and skin from the herxing as the bacteria within me died and flooded my body with their nasty neurotoxins.

A little bit scary, but also a familiar road. This happened last time I took this particular medication too. But this time my reaction has been less severe, my pain less too.

All my symptoms are finally settling down again, but it’s a good reminder that with Lyme treatment it’s so often two steps forward, one step back.

And you know, two steps forward one step back is STILL one step forward when you do the math. 🙂

PS – Don’t you love that photo of Bert? He looks how I feel!

Image from Inspirably

Image from Inspirably

Tribute to Eye Patches

“There was a single blue line of crayon drawn across every wall in the house. What does it mean? I asked. A pirate needs the sight of the sea, he said and then he pulled his eye patch down and turned and sailed away.” 
~ Brian Andreas, Story People: Selected Stories & Drawings of Brian Andreas

Eye Patches. Not just for Pirates!

My evolving sense of eyeball style over the past six months, brought to you courtesy of Lyme Disease

Phase 1 – It’s agony, it’s temporary, we’ll make do.

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Phase 2: I’ll get one of these surgical eye patch numbers from the chemist, and just not go out much.

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Phase 3: Oh hell, I’ll still go out, but I’ll discretely cover it up, and no-one will know that I’m sick and afflicted, even when my friend has to cut my food up for me in cafes and act as a human guide dog. (Thanks, Carly-Jay Metcalfe xx) Reminds self it is a temporary thing. Tries to be cool with it. (Failing…)

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Phase 4: Realisation: I am what I am. Arrrrgh – embrace Inner Pirate and decide to be happy anyway. Find awesome eye patch at Abracadabra, a funky store in my hometown of Bangalow. This eye patch thing could be part of my fashion statement for a while yet. And I’m good with that. In fact I’m out and proud!

2013-08-28 17.53.30And hey, at least I got my smile back!

PS: Kill all the things! 🙂

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Life, blurred.

Typewriter as metaphor for Lyme by Nicole Cody

“I had nothing to offer anybody except my own confusion.” ~ Jack Kerouac

Sometimes, life gets smudged around the edges and my crisp lines fuzzle into fluffy lumps of something but I haven’t got the word for it.

No words is hard for a writer. Or when you forget the shape of things or what her name was. When you cry in your breakfast toast for longing. Wishing the words were perfect in your mouth and your mind was like a railway track, clicketty-clack, that knew where it was going.

Yesterday, or some other time, I wrote and I wrote. Because it all came back.

But now the drugs have bitten hard, and my Lyme is sending poison tendrils out that muddle my brain and leave me stranded.

Image from tumblr

Image from tumblr

It’s like dementia sneaks up and steals your soul, who watches you through a clouded glass, trying to call loud enough for you to hear the magic code which will unlock the words trapped in that other part.

So I will dream awake, and hope the tide leaves me on a better shore, one where words and ideas hang from the trees sweet as fruit and just as luscious.

Here it’s all bitter and lonely-making.  Here I am someone less, and I can’t remember what more tastes like.

Image from tumblr

Image from tumblr