When Husbands Are Right…

“Wherever you find a great man, you will find a great mother or a great wife standing behind him — or so they used to say. It would be interesting to know how many great women have had great fathers and husbands behind them.”
~ Dorothy L. Sayers

 

Big day for me yesterday!

Two specialist medical appointments at hospitals, one at either end of my day. I was feeling pretty good, so I walked – from one end of a mega-carpark to another, and then through the maze of floors and hallways of the hospital that housed my doctors.

Lots of tests. Prodding, poking, bothering.

I still felt pretty good afterwards, because finally I had some good news! The urologist was sure I would end up with permanent incontinence. Nup. Somehow I defied the odds. And my massively resistant superbug that is non-responsive to antibiotics is in fact responding to herbs and essential oils.

And my vision has marginally improved when they said that the damage was permanent.

I guess it was more of an emotional high than anything. I felt like I could dance all day.

My brain was full of ideas. I spent time between appointments organising some new projects, and a pop-up shop and workshops for late November.

I felt AMAZING!

happy dance

Snoopy happy dance – Image from www.keywordsuggestions.com

The entire day my husband kept saying ‘let me get you a wheelchair, Nic’. Or ‘wait til I bring the car round’. Or ‘maybe you should nap now’. But did I listen to him? No.

So. Much. Walking.

So much getting in and out of cars, and off too-low lounges.

So much sitting up and doing stuff.

‘You’ll pay for that tomorrow’, Ben said.

‘I’ll be fine’, I kept affirming.

Hahahaha!

 

Not fine.

I lay down for a quick nap yesterday afternoon that became an all-night sleep marathon, punctuated only by the endless bladder-infection-induced zombie runs to the bathroom still half-asleep.

I woke up late. Way later than usual.

So sore and stiff today that I can barely move. And new eyedrops made it impossible to see out of either eye this morning, although the extra blurriness has mostly cleared now, three hours later.

Sorry, Ben. You were right. Next time I might even listen…

 

Tomorrow I’ll put my eyedrops in AFTER I blog.

Today I’ll nap. I’ll stay extra quiet and still. I’ll rest and rest and rest. Because Ben’s right. I may have overdone it just a tad.

I’ll go now, before the deafening chorus of all of your voices joining Ben’s overwhelms me.

I know. I know.

You were right…

Resting now. Big hugs and love from a still-air-punching-and-happy-dancing-in-her-head Nicole ❤ xoxo

 

Love Looks Like This

hand clasping

“Do not ask your children
to strive for extraordinary lives.
Such striving may seem admirable,
but it is the way of foolishness.
Help them instead to find the wonder
and the marvel of an ordinary life.
Show them the joy of tasting
tomatoes, apples and pears.
Show them how to cry
when pets and people die.
Show them the infinite pleasure
in the touch of a hand.
And make the ordinary come alive for them.
The extraordinary will take care of itself.”
~ William Martin, The Parent’s Tao Te Ching: Ancient Advice for Modern Parents

 

Yesterday was the beginning of a long round of medical appointments for me.

After a discouraging doctor’s visit filled with news I would have preferred not to hear, my darling husband took me to Yum Cha – one of my favourite cheer-me-up places.

It’s also a place where no-one cares if you spill food everywhere and generally make a mess. A handy thing when you can’t see well.

yum cha

But the highlight of the meal was not the food. It was the way that Ben took my hand and without saying anything was able to give me comfort and reassurance just through his touch.

After a fortifying meal and good tea, a few laughs and that deep sense of support, I was able to face the world again.

That’s what love looks like.

Ordinary wonderful magic.

How blessed I am to have someone to love me and to hold my hand through life’s ups and downs.

Wishing for you a touch of that kind of magic too!  ❤ Nicole xx

yum cha love

Nic’s Latest Update: Life as a #Lymewarrior

brave

‘Brave’ by WillowWaves at www.deviantart.com

“O snail
Climb Mount Fuji
But slowly, slowly!”
~ Kobayashi Issa

“Bran thought about it. ‘Can a man still be brave if he’s afraid?’
‘That is the only time a man can be brave,’ his father told him.”
~ George R.R. Martin, A Game of Thrones

 

Ah, Lovelies,

I’d hoped to be bringing you a good news post, a happy ‘post-surgery things are looking up’ story. And it is true, some things have improved. I am out of hospital. I am home in Brisbane, although not yet home to my precious farm. After an entire month of having my hair in a bun on the top of my head I have finally gotten all the knots from my hair and washed it (a three day effort that only others with chronic fatigue or pain will understand!). I have moved from a shuffling gait to a slow walk.

But I’m not as far along my healing journey as I had expected. Because, you see, having Lyme Disease complicates everything.

Having Chronic Late Stage Lyme Disease means that I’m immuno-compromised. Which is why I picked up two infections pre-surgery, which were treated with a metric tonne of antibiotics to get me infection-free before my operation. Treatment worked, but I was a ball of misery as the antibiotics killed not only my infections but lyme bacteria as well.

Surgery went well. Longer than expected and more complicated. I needed unplanned bowel and bladder surgery and repair. But I came out of it strongly and was making a good recovery, even on the new metric tonne of iv antibiotics and antibacterials I was given.

Unfortunately I then I caught a new infection (via my catheter we think) just as I was getting ready to leave hospital the first time. Tests showed it to be an antibiotic-resistant urinary tract infection superbug. It still responds to some old-school antibiotics, but not regular ones, so I was placed onto those.

One tablet, three times a day.

Which should have cleared it. But it didn’t, so now I am on massively increased doses. This old-school antibiotic is also used to clear late-stage lyme (but my urologist and gynecologist know nothing about that – Lyme is well outside their fields). It targets and kills the cyst form of the bacteria by damaging its DNA. Awesome news. So now I am on a drug that kills my superbug AND lyme. (The typical Lyme dose of this drug is just one tablet three times a week.)

Lots of lyme bacteria dying means lots of herxing. So now I am in agony. It hurts to pee. It hurts to poo. I can’t see out of my left eye, and vision is distorted from my right. I am sensitive to light and to sound. My skin hurts. My teeth hurt. My bones hurt. Old injuries are aching and paining. My muscles spasm and cramp. I have a killer headache. I am hot and cold in turns. I can’t sleep. It feels as if someone at odd times is tasering me, or pouring acid on my skin. And then there is my belly wound which goes from hip to hip, and the fact that my insides feel like someone has stitched them into a too tight sausage casing and then punched me in the gut a few times for good measure. And the pinched nerve in my back which has rendered one arm numb and painful and much less mobile than usual. Which instigated a case of shingles. My balance and strength is shot and I need a cane to walk. Let’s just say, it is not one of my better adventures.

I spent most of last night cry-laughing on the toilet. Because of my recent bladder repair it only holds about 200ml of fluid before I need to go, and I need to be drinking LOTS of water right now to flush both the drugs and infection from my system. Peeing hurts. A lot. Before, during and after. Although at least the feeling of pissing razorblades has resolved as the antibiotics kicked in and began working on this little superbug of mine. Now it only burns. So I sat on the toilet more than I was off it. Crying and laughing at the same time, because it was funny but pathetic, and scary but also ridiculous, and as I cried and laughed I panted power phrases like ‘This is just f*cked’ or ‘You can do this, Nic!’ depending on what frame of mind I was in for any given minute.

My friend Jennifer visited me while I was in the hospital and gave me a little bracelet. Inscribed on it is the phrase ‘Be Brave’. Those two words have been a constant reminder to me in the past few weeks. Be uncomplaining. Cry if I need to. Pull myself together. Chin up.

2016-09-17-10-04-21

I am mostly coping okay with the pain and lack of decent sleep. I am being well cared for by Ben, Nurse Bert, Cafe Dog and my dear friend Carly. I have everything I need. The hard thing is my vision loss (which is a temporary situation, we hope, and one I have faced several times while undergoing Lyme treatment in the past). This last fortnight I have had limited vision. My left eye is a complete blur, and my right eye has a restricted field of blurry vision – if I wear glasses, cover my left eye and increase my screen magnification by 300% I can read for short periods, but it is exhausting and gives me a headache. I can’t write. The television is a blur. Do you know how much stuff you suddenly can’t do when you can’t see?

I can’t check my messages on my phone or my emails. I can’t see my phone well enough to call a number – but Siri is getting good use as I task her to read my texts or call my mum. I can’t blog or update you. (I needed help to get this post written and published.) I can’t read any messages you may have written to me, so forgive me if I have not responded. Thank goodness for audio books and imagination land, and for good conversation in small doses.

I’m also exhausted, and after ten minutes of anything I am ready for a nap.

It isn’t where I expected to be, four weeks after surgery, but this is where I find myself. Nothing to do but wait for improvement.

I am good at sucking it up. Truth be told though, I am more than a bit over it. Still, it is what it is and it will get better – just maybe not in the timeframe I’d hoped for (and I am ALWAYS impatient!)

I’m missing my Year of ME Planner and choosing oracle cards to guide my week. I’m sad to be unable to tick things off my to-do list. From experience though, I know that it will all be waiting to help me get back on track again with all my dreams and projects just as soon as I am able. Meanwhile my wonderful team are working on all kinds of lovely things for next year’s Planner, our upcoming courses and retreats, and my new website. (Thank you Dana, Bek, Kerry, Chelsi and my PI transcription crew!)

I’m still sending you so much love in my daily meditations and healings, and I’m grateful for all the good energy you’ve sent my way too.

Hopefully things will sort out sooner rather than later and normal programming will resume. I’m looking forward to that. I AM getting better, it’s just a slow and bumpy road. Fingers crossed that my healing gets fast-tracked very soon. I am choosing to see all of this as a fabullous opportunity to kick Lyme’s butt in a bigger way than I had ever dreamed!

Hugs and love, Nicole xx

2016-09-24-08-55-52

Not Exactly Happy!

“She looked as if she were about to burst into tears, but she was wonderful at catching the ball of her own mood in mid-air.”
~ Rebecca West

 

Thanks for all of your positive thoughts and wishes.

Yesterday kinda sucked. But I’d known it would, so no surprises there.

I could have been up all night writing out my angst in some edgy post, but I was preoccupied and couldn’t sleep and wasn’t really in a space to write. I shook my fist at the heavens, I cried, I muttered, I was stupidly angry – at God, the Universe, my body, myself, my life, the census, all of my lost opportunities and broken dreams etc etc.

After which I got over myself. Because it starts to sound like self-pity after a while, and we can’t have that.

I still couldn’t sleep. I played so much Candy Crush Soda (in the dark on my iPad) so that I wouldn’t wake anyone up that I won heaps of bonus playing time which I then used up because I wasn’t sleeping anyway.

So this morning I am levelled up, I am the Candy Crush Soda Queen, I am sleep deprived and begrudgingly resigned to the fact that, thanks to lyme, my body still has major issues that can only be resolved by major surgery and more drugs. After which, I hope, I’ll eventually feel and function a whole lot better.

I’m okay, and I’ll be okay.

 

Although my current internal dialogue hasn’t quite caught up with that news yet.

Internal dialogue…

*insert big swears*

*insert happy face*

*a bit more swearing*

 

Okay. That’s better. I’ll go make a cup of tea and my day will proceed and life will go on and my bad mood will dissipate. My doctors have charted a path and I will walk that path.

There are still some things to be done before surgery, so it has been scheduled for the day before my birthday. Whoot!

How can you not laugh?

 

Apprehension

Image by SeveIV at www.seveiv.deviantart.com

Image ‘Train Tracks’ by SeveIV at www.seveiv.deviantart.com

“You should have seen this coming,’ they said. I did see it coming. I saw it coming the way you see a train coming when you’re tied to the tracks.”
~ Margaret Andrews

 

I’ve been awake since I don’t know when.

No, that’s not true.

2.36am.

I lay awake in the dark for a long while, willing myself to turn over and go back to sleep. But I was wide awake.

 

I thought about the doctor I will see today. I’ve seen him several times over the past twenty or so years. I thought about him sleeping, and hoped that he was sleeping well and deeply, untroubled by anything.

I wondered if he realised how many of his patients lay awake at night, apprehensive and counting the hours until their appointment. Then I hoped he never thought about it at all. How difficult it would be to labour under such thoughts.

My mind wouldn’t stop. I couldn’t steer it off topic for more than a few minutes. Slowly, dawn approached. My appointment is still hours away. No more sleep for me.

I got up early. I meditated. I sat down to write this blog.

Still, my thoughts are a jumble of worries.

 

Pointless, really.

I will see my doctor. I will get my test results. We will chart a path. I will walk the path.

The part of me that is the wise and coping part tells me I am okay, and that I’ll be okay.

The worried part of me snaps back, “Shut up!”

Which makes me laugh. Eventually.

I am okay, and I will be okay.

Worry never solved anything, nor made time pass more easily.

I’ll have a cup of tea instead. I’ll tidy something. I’ll wait for Ben and Cafe Dog to wake up so that we can have a lovely distracting outing.

And even so, I’ll keep on quietly worrying.

Nx

 

Rain, Words and Silence

Bohdi

“A poem begins as a lump in the throat, a sense of wrong, a homesickness, a lovesickness.”
~ Robert Frost

 

It was raining in the city. Raining and I couldn’t sleep, my head so full of thoughts and my body so tight with pain.

Now I’m home, home at my farm, it’s sometime before dawn even thinks of pushing her first rays over the horizon, and the dark bowl of sky above me is raining cold bright drops fresh as tears. I’m still not sleeping, but I’m peaceful. The pain hums in my belly and my veins but I can drift away on my thoughts to someplace else, and I’m such a seasoned traveller on this night-train now that it’s no imposition. In its own way it’s liberating. I choose to see it like that, anyway.

The beauty of this sacred morning space is achingly, breathtakingly silence-making. No words can capture the majesty, nor fill the space inside me.

Can a poem be composed entirely of stillness?

 

Inside our little farmhouse Ben and the dogs are sleeping. My mala beads are laced through my fingers still, prayers lingering upon them. The fire crackles and hisses in the quiet as the tiny twigs and branches I have placed on the ashy embers smoke and dance their way to life.

 

All night in my not-sleeping space I’ve been thinking about my memoir. I have carried it with me all of this year, and it’s been more an agony than a labour of love.

In the long quiet rain-filled hours that went before this one I finally understood where it has all gone wrong. There are too many words and not enough space. I made it all too busy so I could hide in the pages like some dark shadow-bird. So that you wouldn’t see me. So that you wouldn’t judge me.

It’s in the quiet moments and the emptiness that all the magic happened. In those places I am stripped bare but I was ashamed for you to see me naked. In these past few hours I came to understand it all differently. If you can truly see me, it’s only because you recognise that same place in you. Why was I so afraid to take you there with me?

 

I’m okay, and I’ll be okay.

And so, my friend, will you.

Sending all my love your way, bejewelled with tiny raindrops bright as tears and the scent of woodsmoke and damp good earth.

Nicole xoxo

 

“Trees are poems the earth writes upon the sky, We fell them down and turn them into paper,
That we may record our emptiness.”
~ Kahlil Gibran

2013-08-19 05.53.50

This Dawning Day

“Veil after veil of thin dusky gauze is lifted, and by degrees the forms and colours of things are restored to them, and we watch the dawn remaking the world in its antique pattern.”
~ Oscar Wilde

 

I woke earlier than usual today. 3am. The night air was cold, the comforter pulled right up to my chin, warm and snug around me. Outside it was raining. Cities are so different to farms. I could hear the occasional faint slick of tyres on wet roads, the sounding of a train’s horn and then the click and clatter of the rails, the muffled roar of a jet engine as another plane lifted off and headed for far away.

In the dark beside me was Ben’s rhythmic breathing. My ankles were pinned by the weight of Nurse Bert’s heavy head. Harry Dog stirred, crept up from the foot of the bed, and then nestled in behind my back. Too early by far to get up yet, but not to meditate. I eased myself up into a sitting position, reached for my mala and began.

An hour later it was still dark. Still raining. Around me everyone slumbered peacefully in the pre-dawn quiet.

I would have liked to creep down beneath the covers and go back to sleep, but my mind filled with busy-ness. I knew there would be no more sleep today. Instead I slid out of bed as quietly as possible and shuffled for the door.

I’m always so stiff in the morning.

As my feet made tiny halting movements in the dark, more sliding than stepping, I suddenly knew my grandmother’s body as my own. This is the way she would walk, old and frail but stubbornly independent. There are not many mornings I haven’t shuffled in the past twenty years. Most times I move freely once I warm up. But sometimes I hobble all day.

On the way to the bathroom I do my daily check. Glands up. Morning fever. Throat not sore this morning. Good. Pain? I note all the places. I rate them on a scale of one to ten. I rank my fatigue. My level of alertness. Can I form thoughts? Is my memory there or gone?

When I hit the light switch I wait to see if my vision stays blurry or whether the world around me becomes clear.

Not clear.

I still have limited vision from my left eye. It’s been three weeks now, this latest stretch. A lyme thing. To be one-eyed means that the world around me softens and shifts to two-dimensional. I have no accurate way to judge depth or distance. You’ll know if I have an eye thing. I’m always covered in bruises from where I misjudged the edges of my world. Thank goodness Ben drives me where I need to go, and helps me cross the road or navigate obstacles.

I have a host of coping strategies, and once I get out of my mind and my body and into my plans and dreams I am just fine. Life rolls on. I have found so many ways to thrive and keep going despite current circumstances. Overall, my health has been steadily trending in the right direction. I remind myself of this. Much, much better. I am much, much better.

It’s still raining. Still cold.

Harry Dog has snuck downstairs now to keep me company at my computer. I cradle a mug of ginger tea to warm my hands and my insides, and he curls around my feet and goes back to sleep, one ear cocked for any possible sign that it might be Cafe Time.

I’m on edge today, as much as I am trying not to be. I am off to the hospital this morning for scans. An old problem. One that sat in the back seat with a band-aid solution as my doctors and I worked on more serious issues – like heart failure and multi-organ failure, all of which are now sorted. Health problems are always triaged. I understand that. But this one has caused me no grief for a few years. I’d almost forgotten it was there.

I admit it. I’ve had a crisis of faith these past few days. To enjoy an overseas vacation, to feel health and energy and strength in your body, to feel almost normal, and then…

…and then to have increasing pain, increasing fatigue, a sudden recurrence of old problems. For these problems to escalate and then keep escalating. For your doctors to be suddenly concerned and taking urgent action – more scans, more bloods, more tests, more scans.

Well, it’s taken me a while to get myself back on solid ground again. For me to drag myself off the floor and be ready for whatever comes next.

I’m up now. I’m ready. Or I tell myself that anyway as I sip my ginger tea.

It is ironic, I think, that at the moment when it all goes to shit for me (again!) the pipe in our city house bursts, the rooms flood, things become a soggy stinking mess requiring immediate action. And it has been a glorious distraction. Thank goodness. Maybe that was perfect timing after all. Symbolic too, of everything needing a major clean-up, re-install and renovation.

I’m okay, and I’ll be okay.

That’s a well-used mantra in my house. It works. Trust me.

I’d better dress now. Fasting bloods for me at 6.30am, and then Cafe Time for me, Harry and Ben, while Bert gets a little more shut-eye, all snuggled up on our bed.

Today will pass by in the blink of an eye and tonight I’ll be meditating again, waking in my own warm bed again tomorrow and reaching for my mala beads. I’m okay and I’ll be okay.

Much love to you all.

Nicole xx