Choosing Your Emotional State

“Bad things do happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness, immobilized by the gravity of my loss, or I can choose to rise from the pain and treasure the most precious gift I have – life itself.” ~ Walter Anderson

 

I travelled to see a new Lyme doctor yesterday. In Australia they are getting harder and harder to come by. This one lives hours from my home, so we allocated an entire day and my husband Ben drove me. I am still not up to driving most days, and certainly not a trip of this distance.

After 2 years of intense antibiotic therapy which saved my life, I was unable to find anyone to continue my treatment, and had to stop midway through a program of therapy. Why? My first doctor was shut down, and my second stepped away from practice. My third doctor wouldn’t treat me because of the risks to their career, although they were happy to supervise me on the protocols of a previous doctor until my medications ran out. so, like at many other times in my life I was back to doing my own doctoring.My fourth doctor, the one who initially diagnosed me, still refuses to treat me because it’s ‘too controversial’ – although they will put me on a ‘wellness program’.

Since then I’ve supported myself with herbs, diet, essential oils, acupuncture and detoxing. I have a good GP who is supportive but doesn’t know anything about Lyme. I’d been doing pretty well, apart from a few hospitalisations. But now my chest pain is coming back, and some other worrying symptoms. Symptoms that recently eased when I went on a course of antibiotics for something entirely unrelated. So I know I need to be back under the care of a lyme literate doctor.

To be honest, yesterday was a difficult day. As we drove I knew that my friend Liz was above me in the sky somewhere, winging her way to Hawaii with her family. After a recent cancer prognosis Liz knows she has a very short time left on this earth. I was thinking of her, and the conflicting emotions she would be feeling as she made the journey for what might be her last holiday with her loved ones.

When I wasn’t thinking about Liz I was reviewing my thick folder of health notes. These aren’t all my notes and results. Just the ones from the last few years. The entirety of my notes fills a filing cabinet, and that isn’t even all of them. In fact, in peaks of chagrin or frustration I have thrown many away.

As I looked through my medical files, I became increasingly distressed. I’ve been seriously ill since my late teens. This illness has shaped my entire adult life. Restricted my life. Impaired my life. Almost ended my life on more than one occasion.

I looked at all of the notes from doctors and specialists and natural therapists who didn’t believe me, or put the blame on me when I didn’t respond to treatment. I looked at all of my various diagnoses and treatment plans stretching back to my late teens, when I first became very ill.  I am now nearing fifty and was only given a Lyme diagnosis in early 2013. I could fill a notebook with the diagnoses I’ve had before that.

I thought about all of the doctors whose practices have been shut down over the years for electing to help people like me who are falling through the cracks of the medical system.

I thought of the people I know who have suicided because of Lyme when they couldn’t take the pain anymore, couldn’t see a way out, were getting worse despite their best efforts, couldn’t find any support, or whose loved ones grew weary of the burden of their care. Of all of the sufferers who have never been believed or taken seriously, although they are desperately ill.

I thought of all of the lyme sufferers I know who have died from this disease, or the complications that have arisen from this disease.

I thought of how much money and time I have thrown at this, for such limited results.

And I got angry.

So here I was. Angry and nervous.

Nervous because what if this new doctor turned me away? What if they didn’t believe me?

I forgot to say fearful. I was fearful too. Because I am so much better than I have been and this chest pain is awful and I am so frightened of sliding back to where I was. Or worse.

By the time we arrived at our destination I was a churning mess, although I was trying to hold onto optimism.

The appointment itself was frustrating. The doctor wants more information. They are being very careful. Who wouldn’t, in a climate of such persecution of medicos? While they review all my recent results from the past few years, and discuss my case, I will wait. Hopefully this doctor will then take me on and I will finally have a supervised course of action.

As we drove home in a car filled with silence, I came to a profound understanding.

Most of my life I have faced hardship, especially in regard to my health. Despite that I have remained optimistic. I have made plans. I have held to a vision of a positive future. I have lived despite my disease.

This year I have so many lovely things organised. I am blessed with my husband and the love of my two crazy hounds. My little farm fills my soul with peace. I am well enough to work. I am finally well enough to travel. (Yes, I have chest pain and yes that freaks me out, but I have travelled and lived with this before and been fine, and if I croak it, it won’t matter anyway!)

So I decided yesterday that what matters most is my attitude. I just can’t afford to get bogged down in the injustice and awfulness of it all. I can’t get bogged down in my own personal history. I can’t even get bogged down in my current situation. I have to stop opening that damned folder! I need to rise above this, to turn my face towards the sun and stop looking behind me.

When I think of my plans and I sit in gratitude for my life, I can still be happy. I can still feel good inside.

That dark bird of death always sits on my shoulder. Just as she follows each one of us. But I am comfortable with her now, and she helps me to remember what is important and good in my life. Her presence is a blessing because I am reminded to live mindfully, to chose what matters and to live that. No more for me the life of an automaton. I cannot take life for granted and I won’t.

None of it matters, really. We will all die. We don’t know when. But while we are alive, we can live. And what we choose to think and focus on colours every single day.

I cannot always choose my outcomes or my circumstances, but I can choose my thinking. And that is a powerful place to be.

 

 

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

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

Catching My Breath

Image from ScienceLakes

Image from ScienceLakes

“Breath is the bridge which connects life to consciousness, which unites your body to your thoughts. Whenever your mind becomes scattered, use your breath as the means to take hold of your mind again.” 
~ Thích Nhất Hạnh, The Miracle of Mindfulness: An Introduction to the Practice of Meditation

 

The past few days have been a bumpier ride than I had expected. I’m off my Lyme drugs while I get all my various tests done, and I’d hoped it would be a picnic.

I was wrong.

Some of the symptoms I thought I’d done with came back with a vengeance. The severe pain I endured last week abated, only to be replaced with a different kind of pain.

Meditation. That’s what’s gotten me through. Again. Thank goodness for my daily practice, for that life-saving place of calm and peace.

I know this will all ease eventually, if I just stick with the treatment protocol. In fact, I already feel better than I did a few days ago.

Problem is, I don’t ever get a proper break from Lyme. I can’t take the weekend off from being in my body. This is the poor broken body I’ve been living in for years. I love it, and I’m grateful for it, but sometimes it all gets too much and I wish I could run away and be someone else for a few days, or me, but in another better-working body.

That’s the truth of it.

But we all feel like that sometimes, don’t we?

One thing I know for sure – meditation helps.

Here are a few guided meditations I recorded earlier. Perhaps you might find them helpful for you right now. Follow the post links to access the recordings:

  1. ♥ Guided Meditation for healing Inflammation and Dis-ease
  2. Bee Breath Meditation for reducing stress and opening and healing the Throat Chakra
  3. Tibetan Singing Bowl Healing Meditation
  4. Guided Meditation for Emotional Support

Know that you’re in my thoughts, prayers and daily meditations,

I’m wishing you peace in your heart today.

♥ Nicole xx

And if you want to know more about Lyme, this terrific documentary, Under Our Skin, is a great place to start. It’s movie length, but well worth it. That’s my life, people. That’s my life…

A Short Walk

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“Many people nowadays live in a series of interiors…disconnected from each other. On foot everything stays connected, for while walking one occupies the spaces between those interiors in the same way one occupies those interiors. One lives in the whole world rather than in interiors built up against it.”
~ Rebecca Solnit, Wanderlust: A History of Walking

 

I’ve been cooped up for days, and yesterday afternoon I just needed to be outside. I’m not up for walking far right now. One of the meds I’m on for my lyme treatment has a potential side effect of stiffening ligaments and tendons, giving them increased risk of tear or rupture. Getting into bed last week I did my knee. As I lifted it off the floor I heard it go pop, pop, pop like a zipper unzipping, and the next thing I knew my knee hurt A LOT, and then of course it swelled. Off to the awesome physiotherapist (Thanks Simone!) next morning and then my knee had to be iced, elevated, strapped and rested.

On top of everything else…

But isn’t that always the way? 🙂

Yesterday I took a short stroll (hobble actually) around my front yard. Just to breathe the air, fresh from rain. Just to feel the sun on my skin. To put my face against the bark of a tree.

I stood outside and drew some breaths deep into my body. It made me feel better.

Maybe a short stroll might help you too.

Here’s my walk, in pictures…

Lilies in the cattle trough.

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Orchids flourishing in a crevice of the fig tree.

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Gazing up through the branches of the fig tree, my face pressed to its cool bark.

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Blue sky peeking through the clouds.

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The Hoop Pine in our front yard. Just beyond the fence is the eucalypt glade where Mr Grunty, the big male koala hangs out.

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Late afternoon view down to our front gate.2014-03-31 17.26.03Thanks for coming with me on my little stroll.

Much love to you, Nicole xx

 

Love Letters to Myself…

Image by Dinah Corley

Image by Dinah Corley

“Be the one who nurtures and builds. Be the one who has an understanding and a forgiving heart one who looks for the best in people. Leave people better than you found them.” 
~ Marvin J. Ashton

So today I begin the next round of drugs that are making me well. Problem is, in taking these drugs they are also going to make me sicker first.

It’s not just the physical symptoms either. The relentless high level pain, nausea, fevers and chills are something I’m getting better at dealing with.

Besides the pain, the worst part is that horrible space of insomnia, brutal depression, social isolation, abject misery and anxiety. That’s not a normal part of my psyche. Most of it is actually a documented side-effect of the drugs, and of the bacteria that have invaded my body. But it doesn’t matter WHY I feel it, the fact is it’s likely to be part of the scenery for the road I’m about to travel.

That’s why I spent a little time yesterday making preparations for the days ahead. I’m not being negative. Having walked this road before I know what to expect. Perhaps I’ll be fortunate and NONE of this will happen in Round Two. But if it does, I’m ready.

Image from WAH

Image from WAH

I have recorded myself some meditations and ‘bedtime stories’ full of gentle encouragements, relaxation and pain minimisation techniques, sleep inducers and reminders of who I am and what’s important to me for those moments when I’ll struggle to get into the right headspace.

I’ve been meditating for over thirty years, and I still have times where getting into a peaceful space eludes me. No point in forcing that. I need to make these next few weeks as easy for myself as possible. When things get tough I can listen to one of my guided meditations!

I also wrote myself a few little love letters, wrapped up some of our feel-good DVDs and CDs that never fail but make me smile, and filled a couple of postcards with coping strategies. Because let’s face it – who remembers this stuff when you’re down in the hole? I now have a box of letters and presents that I can ‘Lucky Dip’ into, trusting that I’ll pull out exactly what I need when the going gets tough and I need some extra support.

Maybe I’ll share some of these over the next six weeks. Perhaps you might find them useful too, if you ever feel the need to wrap yourself in a blanket of love. If it sounds like a good idea let me know and I’d be happy to do that for you.

Okay. Let the count-down to the other side of this ordeal begin!

5 weeks, six and a half days to go…

Unexpected Blessings

Original image source unknown

Original image source unknown

“Women are never so strong as after their defeat.” 
~ Alexandre Dumas

I admit it. Yesterday, for a moment (or perhaps a little longer) I wondered how I would pick myself up and keep going.

I cried.

A lot.

My doctor wants me to continue with another full course of the horror drugs which had me counting the days and hours til I was done with them.

Six more weeks.

And this shall then be followed by more drugs which I’d previously not got on well with, in different combination.

Oh. My. Goodness.

So – drugs. I needed to buy more drugs. Yesterday, after my doctor’s appointment, Ben dropped me out the front of a shopping mall because it was crowded and he needed to park the car a great distance away. I am not up to walking far right now, and my progress is a snail’s pace. I wasn’t even half way to my destination – the pharmacy – when he had caught me up. I cried a little when he did. He had already been to the pharmacy and was doubling back to look for me. “God, you worry me,” he said, his face so sad and filled with compassion. He took my arm and steered me on my way.

After we’d dropped in my fistful of scripts and bought some supplies for our few days in Brisbane we headed back outside, where Ben left me in the shade of the front entrance while he went to fetch the car.

I felt fragile; so tired and weak, as I wondered how I was going to do this thing.

And then, out of nowhere I was enveloped in the biggest of hugs. A client, who is also a dear friend, had spied me as she sat in a cafe. Behind her other friends and her partner followed, all of them with hugs and kind words.

Their love lifted me up.

Image from Travelling Yogi

Image from Travelling Yogi

At home I changed into my pyjamas, ready to lie down and rest. As I took off a bracelet and placed it in a bag, something fell out at my feet. A little medallion.

I picked it up and turned it over in my hands. And began to laugh.

A few days ago I was talking to my sister about our family tree. ‘Did you know we have a Saint in the family?’ she asked. Of course, I didn’t. As we talked I googled her: Saint Margaret, the Patron Saint of Scotland. ‘You can get her prayer card,’ Simone said. ‘But I don’t know if she has a medal…’

Not being Catholic neither of us knew much about this whole Saint thing at all.

We both then agreed that it would be handy to have a Patron Saint. I googled Patron Saints for the rest of that afternoon, quickly becoming overwhelmed, and finding no-one that really jumped out at me.

The medallion that fell out at my feet?

My Saint Peregine medal

My Saint Peregrine medal

I found it on the ground outside a pie shop in a little town called Childers about four years ago. It was worn and grubby, and I had no idea what it was, but I slipped it in my pocket and brought it home, where it’s lain forgotten ever since.

It’s actually a Saint Peregrine Medal. Saint Peregrine is the Patron Saint of serious illness, cancer, AIDS and so on.

I said a little prayer, and I’ve placed that battered medal on a chain around my neck. It seemed like the right thing to do. It makes me feel that somehow, everything will turn out just fine.

So, out of a difficult day I received more Blessings than I’d ever expected. Isn’t life the most wonderful adventure?

Image from Hatke Quotes

Image from Hatke Quotes

Update from Nurse Bert

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“Wounding and healing are not opposites. They’re part of the same thing. It is our wounds that enable us to be compassionate with the wounds of others. It is our limitations that make us kind to the limitations of other people. It is our loneliness that helps us to find other people or to even know they’re alone with an illness. I think I have served people perfectly with parts of myself I used to be ashamed of. ” 
~ Rachel Naomi Remen

“I choose to write because it’s perfect for me. It’s an escape, a place I can go to hide. It’s a friend, when I feel out casted from everyone else. It’s a journal, when the only story I can tell is my own. It’s a book, when I need to be somewhere else. It’s control, when I feel so out of control. It’s healing, when everything seems pretty messed up.
And it’s fun, when life is just flat-out boring.” 
~ Alysha Speer

Hello,

There’s nothing much to report here. Nicole is still in bed, and I growl when she tries to get up. This tactic seems to be working.

I have patented a new anti-movement device. In the picture above it might look like I am napping, but this is in fact my new motion-sensor facility. It works really well. She hasn’t tricked me yet!

Anyway, she has one week and six days left on these drugs. We are counting every hour. In the meantime I am telling her all of the good recipes she can blog for you. Roast-a-rama. All kinds of meat pizza. Bones with sauce. Barbeque meats. She can test them on me and Harry so we know they’re good for you.

Okay, I have to wake my patient up. It’s drug time. Be kind to yourselves today and remember that napping is an art form that must be practiced to be perfected. I hope you do some practice this weekend.

Sincerely, Nurse Bert xoxo