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

 

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

A Big Green #Lyme Anniversary!

Image from The Cake Trail

Image from The Cake Trail

“We are not the same persons this year as last; nor are those we love. It is a happy chance if we, changing, continue to love a changed person.”W. Somerset Maugham

I was talking with my sister yesterday, and she said to me, “Hey, are you planning anything special for your thirty year anniversary tomorrow?”

“Huh?” I replied.

“You know, this Saturday is the same weekend  thirty years ago when you were bitten by the tick that gave you Lyme disease. Ekka weekend. That anniversary!”

Simone remembered because I glued the tick into her school diary, which, weirdly, she kept for all those years! Thanks, Sissy :)

tickindiary5 (1)

Wow. Thirty years. That’s such a long time.

It made me sad at first, to think of how much of my life has been claimed by this disease, and then I decided that enough of my life has been given over to sadness. I thought long and hard about how Lyme has changed me.

This is what I came up with.

If I hadn’t been bitten by the tick I would have gone on to become a lawyer, and my ambitions would have taken me far, far from here. I would have never married my first husband. I would not have gone to the Kimberley for my life changing connection with the Aboriginal Aunties. I would have continued to ignore or hide my psychic gift. I would have shunned this thing that I am, in favour of something more conventional.

Lyme has stripped almost everything away from me. My ability to have kids, to study, to live a normal life, to work in a normal job.

But it left me two things. My ability to love, and my ability to live and work within the metaphysical planes of existence. I had always seen that as a diminishment, and now I see that Lyme distilled me down to my essence, and forced me to live as a psychic. It was the only thing left that I could do.

That’s actually a beautiful thing, hard a journey as it’s been.

Now, as my health slowly returns, as I walk this hard journey of healing, things are being added back in to my life. My ability to think, to write – these two things have become such precious, precious gifts. When I was young I took it all for granted.

No more.

Tomorrow I shall celebrate my essence. The gifts of love, compassion, psychic connection, perseverance, moral courage, gratitude and hope, and the return of words, imagination and the ability to write again.

That’s worth a good cake, don’t you think?

The owl in the tree outside my window agrees!

barn_owl

Are You Giving Yourself Space To Heal?

“Rest is not idleness, and to lie sometimes on the grass under trees on a summer’s day, listening to the murmur of the water, or watching the clouds float across the sky, is by no means a waste of time.” ~John Lubbock, The Use Of Life

I’m on a fairly savage regime of drugs and herbs for my Lyme disease just now. Both the treatment and the illness place a burden upon my body, and so doing what I can to support healing and detoxification is paramount.

To cope, I’d developed quite a routine, actively including everything I could to detox myself. The routine itself was exhausting, and I was earnestly looking for whatever else I might add to make the process even better. Did I mention I’m in a hurry to heal?

As I was lying on a treatment bed with needles protruding from me, and a smoking box burning on my belly, I asked my acupuncturist for his advice. What was I already doing, he asked me. Dutifully I rattled off my long list, feeling rather proud of myself.

He paused for a few minutes, feeling my pulses, tweaking a needle or two. He was quiet. Thoughtful.

Do less, he said.

Image from Full Her Life

Image from Full Her Life

Less? That threw me. Shouldn’t I be doing EVERYTHING I can to get better?

No, he said. Being so busy, so consumed with wellness, puts a stress upon the body too. I had made healing a job. Withdraw a little, he said. Read a book. Have a nap. Sit quietly in the sun. Make things easier for yourself.

He’s right, of course. Sometimes we think that doing all we can is better, when really, less is more. Healing happens in the quiet spaces, the down time, the growing sense of ease.

How about you? Are you giving yourself space to heal? Maybe you’d be better off having an early night, a slow weekend, a simple diet, more rest.

Here’s to wellness and balance in our lives. Be kind to yourself this week. Bless xoxo

Image from My Peaceful Soul

Image from My Peaceful Soul

Herbal Tea Recipe for Adrenal Fatigue

ginger tea

“My love affair with nature is so deep that I am not satisfied with being a mere onlooker, or nature tourist. I crave a more real and meaningful relationship. The spicy teas and tasty delicacies I prepare from wild ingredients are the bread and wine in which I have communion and fellowship with nature, and with the Author of that nature.”
~ Euell Gibbons

If there was an herb put on earth to assist those with Adrenal Dysfunction, licorice root is that herb.” ~Dr. Andrew Neville

 

In our modern world of high stress Adrenal Fatigue is becoming increasingly common. It is caused by the adrenals working too hard over too long a time, leading to this system in your body becoming tired and less productive. Adrenal fatigue often goes hand-in-hand with thyroid issues, and it is a common complaint for those with chronic illness such as diabetes, Lyme disease, fibromyalgia and chronic fatigue.

Symptoms of adrenal fatigue include decreased libido, mild depression and anxiety, sleep issues, that ‘flat battery’ feeling where rest and sleep doesn’t restore you, feeling rundown, being easily overwhelmed and unable to cope, and feeling generally exhausted and unwell.

This is a very useful tea for supporting your adrenals, and for soothing your digestion and supporting your immune system. The tea is anti-viral and anti-inflammatory for your body. It is also a mild electrolyte, so this tea will help to rehydrate you as well. If, like me, you suffer from Lyme disease, this delicious tea will also aid your body in kicking those bacteria to the kerb!

Dried licorice root is available in many health food shops or Asian herbalists or grocery stores. So too are fresh ginger and turmeric roots.

Ingredients:

6 pieces of raw dried licorice root, 6 slices of fresh ginger root, 2 or 3 thin slices of fresh turmeric root or a pinch of two of dried turmeric powder, a pinch of Himalayan or Celtic salt, a pinch of stevia, a lemon.

*Note – turmeric has a tendency to stain things yellow, so don’t use your best teapot, or your Mum’s prized china!

If your immune system needs a bigger boost feel free to add more turmeric and ginger.

Method:

Place the licorice, ginger and turmeric in a teapot or thermos that holds one litre (4 cups). Let steep for ten minutes. It will go a very pretty shade of yellow.

licorice and turmeric tea

This tea can also be made in a saucepan on the stovetop. Bring licorice, ginger and turmeric to the boil, then turn off the heat and let steep for ten minutes. This produces a stronger tea.

adrenal tea

To finish the tea, add the pinch of salt, the pinch of stevia (or to taste) and a good squeeze of fresh lemon juice. For convenience you could also slice the lemon and add a wedge or two to your cup, teapot or water bottle after the boiling and steeping process.

I sometimes make this tea in a 1 litre stainless steel water bottle, replacing the lid once the liquid has cooled to warm rather than boiling. The tea is very pleasant at room temperature. When I have drunk it down to about a quarter full I refill with hot water, and get another batch out of my ingredients. It’s a very easy way to get my water allowance over the day.

herbs

Requiem For A Lost Poet – #Lyme

Photo of Heather Askeland

Photo of Heather Askeland

“I don’t need a cloak to become invisible.”
~J.K. Rowling, Harry Potter and the Sorcerer’s Stone

 

I found out earlier this week that a fellow Lyme sufferer in the USA took her own life. I never met Heather, but I know her journey. All late-stage Lymies know, and understand, because so easily, that could have been us. The news of Heather’s death made me sad. So very sad. And angry. But anger won’t bring her back.

The news of Heather’s death made me feel helpless too. I never knew of her struggle until it was too late. This wretched disease that has wreaked havoc and destruction in the lives of so many, including mine, became too much for this young woman to cope with on her own. People need to know. It isn’t right.

Sadly, Lyme disease, like most ‘invisible’ illnesses has a very high suicide rate. Sufferers get worn down by their illness, by the cost of treatment, by the contempt of friends, family and many in the medical fraternity who don’t believe that they are sick. When you are desperately ill, and you can’t work, and you have no money and no safety net of family or friends (or you wore out your welcome, or spent your family’s last dollar) and you can no longer take care of the most basic survival tasks in your life, you run out options pretty fast.

But that’s not why I’m writing this post.

I’m writing to honour Heather Askeland as a poet, and an artist. I wanted to share her work with you. I wanted her to be remembered with the fullness of who she was.

This is a poem she wrote about selling her beloved violin to help pay for treatment:

the sold violin by Heather Askeland

the A string keens, a notch flat, lost
songbird carrying morning.

the sun is a steak knife slicing dust.
you crouch, release the zipper’s

low whine. case like a toothless mouth.
there is no music here.

no wooden neck to cradle
like a newborn’s head,

no thin steel creasing prayer
into fingertips. no satisfied tendons,

no sweat
other than the nightly fever.

you used to play Tchaikovsky.
your fingers were silverfish,

the audience thunderclap your
favorite drug. now bright lights spin

you like a top. snap you in two,
a severed dandelion.

you are lucky. illness is expensive.
you trade horsehair and childhood

recitals for antibiotics.
how many centimeters of soundpost

for homeopathic injections? for the
metronome of an IV drip?

how much varnish for hair loss?
for the skipping stone

pulse, for each battle between gut
and bread? which Bach sonata

for the skeleton memory?
your neurons are sunken ships,

the dead fish sing you lullabies, let meat
rot in cupboards and crackers grow freezer crystals.

for a moment you panic. wonder why
the case is empty. check the windows. the cats

are two otters in their sun pools.
you remember: the violin is gone.

the violin is everywhere.
it is white cells, methylation pathways

morning yoga sessions. medication three times
a day and herbs that taste like molding twigs.

the 1812 Overture blasts its cannons
with each push of blood from chest to toes.

no one can hear it but you.
your arms are warm.

the music never left, is waiting for you
to turn it up.

Image from wall alpha coders

Image from wall alpha coders

And this is the final video Heather made, her one last shot at trying to find help. As you already know, it never came.

 

Spare a thought for Heather today. Say a prayer, send a blessing, wish her peace. Honour her short life for the artist she was – not as her disease, not as a lyme warrior – honour her for her poetry and her caring heart.

Heather Askeland

Heather Askeland