It’s crowded here right now…

“Nurses dispense comfort, compassion, and caring without even a prescription.” ~ Val Saintsbury

 

While I’m busy on bed rest just now I’m being very well looked after.

Harry and Rufous take turns to stay with me during the day.

Except for nap time, when we all bunk in together.

There’s no chance of me moving. I’m well secured to the bed by their heavy heads.

During the night they are there beside me every time I get up (which is lots due to my UTI still not resolved).

I feel very loved and cared for.

I still don’t seem to have much energy and tire after the simplest activities, but I can finally see some small improvements, so I’ll keep resting and following doctors’ orders.

June is a fabulous month for attending to our own wellbeing. I hope you’re carving out some time for yourselves too. Your health and happiness are important. Please don’t play second-best in your own life!

Biggest hugs and love to you all,

Nicole <3 xoxo

 

 

Ginger, Ginger, Ginger!

“It doesn’t matter how many times you get knocked down. All that matters is you get up one more time than you were knocked down.”
~ Roy T. Bennett

 

Instead of blogging this morning I have been processing raw ginger root. One kilogram of organic ginger from our local farmers markets. Peeled. Then chopped. Then whizzed into a pulp.

Trust me, that’s a lot of ginger!

I’m taking a moment, midway through, to write to you and tell you I haven’t forgotten you. I’m just in a ginger processing frenzy is all!

I have an appointment at 8am with my acupuncturist. He’s going to make a ginger boat on my lower back with some of this freshly prepared ginger, fill it with moxa (dried mugwort) and then light it up. The heat draws the warmed ginger oils deep into my back, kidneys, bowel and bladder. In TCM (Traditional Chinese Medicine) this treatment dispels cold and damp, improves circulation, and is anti-bacterial.  It feels wonderful, and that warm feeling lasts about two days.  (If you missed why I am doing this read yesterday’s post!)

It’s also grounding and nurturing. Just what I need right now.

I still have symptoms and I’m still being treated and we’re not giving up. I’m sure, one way or another, we’ll get on top of this latest hiccup too.

Thanks for all your well wishes, prayers and healing energies. Ben and I truly appreciate them.

Okay, back to chopping!
Much love, Nicole xx

Here’s a photo from a session earlier this year. So good. Can’t wait to do this again today!

Fancy Gumboots – Perfect For Dancing!

“Dance, when you’re broken open. Dance, if you’ve torn the bandage off. Dance in the middle of the fighting. Dance in your blood. Dance when you’re perfectly free.”
~ Jalaluddin Rumi

“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

 

Easter weekend is here again, and of course two things are a given:

  1. It’s Bluesfest here at Byron Bay
  2. It’s raining

And my old gumboots died somewhere around Christmas. But that’s okay. Yesterday Ben bought me some new ones.

I now have the world’s comfiest, warmest gumboots (or galoshes or wellingtons depending on where you are!).

They are soft but sturdy, and lined with fur. Completely waterproof, washable and light. And they even have little handles to pull them on and off.

Heaven!

These gumboots are perfect for tramping around the paddocks here at the farm, or for doing a little gumboot boogie if the mood takes me.

I’ll be wearing them tonight as I dance my heart out. Because unless I’m dead, I’ll still be dancing!

How about you? What do you have planned for the Easter weekend?

Hugs and love, Nicole <3 xoxo

PS – Life is usually not perfect. Stuff rarely goes to plan. Celebrate anyway. Live anyway. Because you never know when the music might stop. Make the most of your weekend, lovelies, and do something that makes your heart glad, even if it’s a bit of a stretch for you. That’s my secret to happiness! (And yes, for some of you that might mean resting rather than crazy running around.) Love you xx

Image from www.susanspangler.com

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 <3 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!  <3 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?