Stubborn Determination

“He that can have patience can have what he will.” 
~ Benjamin Franklin

That’s Daisy Mae in the picture above. She’s the one staring cheekily at the camera from the right-hand side of the photo. She’s eyeballing me because she has been breaking into the house paddock and eating all my new vegetable seedlings and petunias.

But there’s another naughty cow in that photo. Do you see her? She’s standing behind Daisy Mae – look for the red cow with the pink ear tag. That’s Tilly.

Tilly has been sneaking into the house paddock too. But not by opening the gate. Tilly has slender legs and feet, and has found a way to walk through the cattle grid and into our yard.

After we locked Daisy Mae out we still kept finding mystifying evidence of cow break-ins but we couldn’t find the culprit. Until yesterday. As I looked up from washing the breakfast dishes there she was, staring back at me just a few feet on the other side of the window. Tilly got such a shock, and so did I. By the time I got outside she was in the process of delicately picking her way back over the grid to safety.

Twice more she got back in, waiting until she was sure we were in the house and then stealthily crossing into our garden.

After the third time we put rope across the driveway to keep her out.

And when we were making a late afternoon cup of tea there she was again. She’d wriggled underneath the rope on her belly!

Finally, late yesterday, Ben and I moved the cows down to the river paddock. It’s flush with feed and so there is no need for her to eat my garden anymore.

It’s hard to be cross with her though. What a strategic and determined girl she is as she goes after what she wants. Qualities I deeply admire.

Hugs and Love, Nicole xx

Gumboot Adventure and a Lyme Update


“One final paragraph of advice: do not burn yourselves out. Be as I am – a reluctant enthusiast….a part-time crusader, a half-hearted fanatic. Save the other half of yourselves and your lives for pleasure and adventure. It is not enough to fight for the land; it is even more important to enjoy it. While you can. While it’s still here. So get out there and hunt and fish and mess around with your friends, ramble out yonder and explore the forests, climb the mountains, bag the peaks, run the rivers, breathe deep of that yet sweet and lucid air, sit quietly for a while and contemplate the precious stillness, the lovely, mysterious, and awesome space. Enjoy yourselves, keep your brain in your head and your head firmly attached to the body, the body active and alive, and I promise you this much; I promise you this one sweet victory over our enemies, over those desk-bound men and women with their hearts in a safe deposit box, and their eyes hypnotized by desk calculators. I promise you this; You will outlive the bastards.” 
~ Edward Abbey

*Note: I recommend reading all the way to the end of this post. Past the pictures even. Oh yes, I do.

People are always asking how I am and I almost always say ‘fine, thanks’.

Truth is, I have advanced late-stage Lyme disease, and as with any chronic degenerative illness I have a catalogue of woes so to actually tell you how I am might take hours. Boring. I’m over it long ago. So ‘fine’ or ‘okay’ mostly does the job. I manage. Many days are great, and I am working, living and making the most of what I can. Happy, happy. I don’t dwell on my health or lack thereof.

Mostly.

I’ll level with you, though. The last few days have been rough.

I’m miserable right now.

I picked up a cough while visiting Ben’s mum in the nursing home. After four weeks it has steadily become worse and I can’t shake it. Because of that, my UTI flared up. I’ve been peeing five times a night and my bladder is agonisingly sore. I have been feeling myself slowing getting more run down no matter how good my self-care and health care has been.

So I started on new Chinese herbs two days ago for my latest infections. Great news – they’re working! Less great news? They are also killing Lyme Bugs so I am herxing like crazy as the Lyme dies and releases toxins into my already overloaded body. My eyes are red and streaming and only one is working, only one side of my face is mobile and responsive, my skin is on fire, I’m photophobic, I have stabby pains and night sweats and swollen glands and bone aches and head aches and nerve spasms and tender teeth and numb fingers and toes and neurological incontinence (I wee my pants for no reason!) and generally more misery than I remembered was possible. Yay? But fighting bugs, so yay!!!!! Now we’re working on getting the dosage correct so that I can manage the chest and UTI infections without going mad from herxing. Please don’t worry. I’m in good hands. (And yes, I have cried, screamed and whimpered often this past few days because I’d forgotten how truly awful herxing can be.)

I’m smiling here, honest! It’s just that only one side of my mouth lifts up right now…

In the midst of all of this misery I needed to go open a gate at the farm for Ben. I got out of bed, left my pyjama top on, threw on some shorts and my gumboots and slogged down to the Tractor Shed paddock.

Oh. It was so beautiful there in the misty cold afternoon. The ground was soft and green and lush. The trees shone with a vibrant light, and the birds sang. It felt good to be out of bed and outdoors.

When my short adventure was over I hastened back to a hot shower, fresh pyjamas and more rest.

It was worth it to have that little gumboot adventure.

I’m wishing you little adventures too. No matter how shitty life gets, a little tiny adventure, a small moment fully lived, a simple pleasure fully and mindfully experienced – that’s what makes it all more manageable. I rate my coping skills as high. And that’s one of the reasons why!

Biggest love and hugs from this tired and battered Lyme Warrior. I’ll be back at my best soon, I’m sure. Meanwhile, I’m happy to be herxy. (Well, mostly! xx)

PSS – Thanks if you scrolled down this far. Just a reminder that I am massively sleep deprived and in pain right now. So if you:

  1. suggest that positive thinking might be beneficial or a cure-all,
  2. offer to hook me up with your miracle-inducing network marketing product, or
  3. remind me that I somehow manifested all of this as a learning experience,
  4. or that this is karmic

then I can’t be held responsible for my actions. Need more help with this because you’re itching to do one of the above? Read this first.

Choosing Your Perspective

flowers from my garden

“If we are always arriving and departing, it is also
true that we are eternally anchored. One’s destination is never a place but rather a new way of looking at things.”
~ Henry Miller

 

I have never been much good at arranging flowers. I’ve never had the eye for it.

That is, until I found myself suddenly vision-impaired as a side-effect of some medication.

Usually my friend Christine arranges flowers from my garden for me when she comes to clean my house. It’s such a simple thing, but her arrangements always give me so much pleasure. Whenever I tried to create an arrangement of my own they never looked as pleasing as Chrissie’s.

While I have been in the city, recovering from surgery, there have been no flowers in our little farmhouse. So now I am home I decided to have another go and do it myself.

It was easier this time. Everything is blurry, so all I had to do was cut some blooms from the garden, choose a vase (an old teapot!) and then begin. I found myself arranging them by placing a few taller flowers and then filling in the holes with colour. It became all about the colour rather than the individual flowers or their shapes. It became about emotion and flow rather than about getting it right, and suddenly I had a vase full of flowers that spoke to my heart.

All I’d needed was to change how I saw things.

It’s amazing what a simple change of perspective can do for you.

roses and gardenias

These flowers on my kitchen windowsill are in honour of my friend, Kate, who passed away 6 years ago. Every year on October 26 I pick the first gardenias for her. This year for the first time there was a red rose too. I felt that shift from grief to acceptance. I still miss her madly but I walk this world with the ghosts of so many departed loved ones at my side now that it has become oddly comforting.

 

I still can’t see very well (I have about 20% vision in one eye and 50% vision in the other) but I am back doing most of the things I always do – with some necessary modifications. I’ve also had some bonuses. As I watched a wedgetail eagle soar above our farm yesterday I realised that the giant bird left a momentary energy trail in the sky, which I could see as a river of colour behind it, mapping its flight path through the sky. It was breathtakingly beautiful.

This doesn’t mean that suddenly I am okay with vision loss. It’s been incredibly hard. At least once a day I teeter at the edge of a dark deep hole. It’s only recently I haven’t fallen in several times a day. Still not a day goes by that I don’t shed a quiet tear or become momentarily swamped by misery. Truth is, I would much rather have my sight.

But crying and feeling bad doesn’t help. It doesn’t solve anything. And after a while it just gets boring. It is what it is, and adapting works better for me than stubbornly resisting what is and being only okay if it all changes back to how it was before.

I do my best to focus on what I can do. I look at how I can adapt and keep moving forward. I search out alternatives and new solutions. I change my paradigm. Looking from a different perspective always helps. It’s one of my best coping skills.

How about you?

Where in your life right now would you benefit from a perspective shift?

Lots of people have been telling me how panicked they are, or how regretful, that this year is almost over and they never got done what they’d hoped to. You can keep looking at life from that perspective, but it essentially means that you give up on your cherished dreams and outcomes. It’s almost over – I’ll stop trying. It’s almost over – there’s no point in even starting.

What if you change that perspective? There are two months left until year’s end. That is time enough to create change and to forge a different result for yourself.

If you’d like to join us for a month of dedicated perspective-shifting and outcome creation, sign up for #GeShiDoMo – our November-long program for creating and completing goals – and finish 2016 strong. I’ve designed this program so that if you are really stuck you can ease back into momentum again. There are choices that allow for all kinds of goal-setting and achievement, and a special category for those of you who actually need to have less DOING and more BEING in order to find a path back to self-care and life balance.

There is always time to change our perspective and try life from a new angle. I know you’ll be glad that you did!

Sending much love to you, Nicole <3 xx

flowers from my garden

On Overcoming Obstacles

“Nothing in this world can take the place of persistence. Talent will not: nothing is more common than unsuccessful men with talent. Genius will not; unrewarded genius is almost a proverb. Education will not: the world is full of educated derelicts. Persistence and determination alone are omnipotent.” ~ Calvin Coolidge

 
I have always wanted to be a writer.

I wrote my first full book when I was four, complete with illustrations.

Writing was what I did. It was who I was.

But contracting Lyme Disease at sixteen changed all that. I began to lose words.

By the time I moved to the Kimberley, when I was in my mid-twenties, things were significantly worse.

I write about it here, in the draft of my memoir, based on that period in the Kimberley with my Aboriginal Aunties. At the time, my diagnosis (I’ve had many before Lyme) was relapsing and remitting multiple sclerosis.

“I stepped out of the laundry block and looked up at the sky. It was filled with beautiful streaky…

It was filled with beautiful…

You know.

Those white things.

What were they called?

For the life of me I couldn’t find the word. White was all I could come up with. I knew they weren’t called white. I knew they had a name. But that word, whatever it was, remained dangerously elusive.

Fluffy?

Bear? No, that wasn’t the right word. I sighed with exasperation. Now I couldn’t remember what bear was. But it was brown. Like a tree trunk?

A quiet horror awakened in me. As I ticked off the possible causes – lack of sleep, dehydration, low blood sugar – I knew it would be none of them. I dreaded to think that it could actually be multiple sclerosis. This dull worry exploded inside me, and a moment later my inner warning lights came on. My vocabulary had shrunk dramatically over the past several years, but I’d never lost a word before. I’d always been able to find another word that worked. If I couldn’t say beer I’d say ale or tinny or cold drink. I had good coping strategies. Even when my cognitive function hit a major low I’d managed. Point in case: I had been coping with my new lack of ability with numbers. After all I could still read words, I could still read numbers. I found a way around the problems.

This was the first time I had looked at something familiar and gone completely blank. Words, knowing how to string them together, writing them, speaking them, crafting them, had always been the one thing I could do well. Writing was my fall-back plan. My secret love. What if I lost my words? I couldn’t bear to think about what my life would look like if that happened.

All week it worsened. I never did remember that word for the white things in the sky, and couldn’t even cheat a little by looking them up in my dictionary because I didn’t have a starting point. I also noticed that things didn’t stick in my brain. After reading and re-reading a fax and still struggling to make sense of it I resorted to a list of short bullet points, summarising as I read each paragraph. The bullet points kept my thoughts in order, and jogged my memory. I was reluctant to ring my doctor back in Brisbane, worried that he’d tell me to leave the Kimberley and come home immediately, from which I’d eventually end up in an aged-care facility with all of the old people who had also lost the ability to think and do for themselves.

I became suddenly, stupidly, enormously insecure. Carefully I observed myself, keeping notes in my journal each day. My cognitive dysfunction became worse when I was tired or stressed, and my best time was from when I woke up until lunch. There was a black hole each afternoon where my brain function was massively retarded, and it picked up a little again after four in the afternoon. I rearranged my day so that my mornings were all about problem solving, writing and math. My afternoons were filing, tidying and simple tasks that didn’t need much brain power. No-one else noticed that anything was wrong. I still managed to work each day and complete my duties. However, no matter what I did, the sudden decline in my mental ability was terrifying.”

 

That terror, that dumb incapacity, that lack of ability to find the right words, to remember the plot or the characters, to hold a train of thought? Those things have plagued me my whole adult life. The last paragraph from my memoir extract? That sums up living with Lyme. That sums up three decades of my life.

Sure, I’ve still written. I’ve compensated. I’ve found ways to get words on the page. But they haven’t always flowed, and as the number of pages increased so did my confusion.

Now, after two years of hard-core drug treatment, and a host of other helpful modalities and herbs, my brain is healing. I am healing. My function is coming back.

At my writers’ boot camp this weekend, words have been pouring out of me. Good ones. Words, that when I read over them later, make me weep.

Because I have found that place again. The one that has been lost to me for thirty years. I can remember plots and characters, I can see where something needs to be edited, and I can reach into that wellspring of ideas and still find my way back from the catacombs.

That’s a handy thing.

After thirty years I have so much to say!

Your take-home on all of this?

Don’t ever give up.

Ever.

Be resilient. Be determined. Trust that you will find a way.

Holding you, and those intentions for you, in my meditations and prayers,

Nicole xx

Image from danhilbert.wordpress.com

Image from danhilbert.wordpress.com

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