An ordinary night of magic!

“The purpose of life, after all, is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experience.” ~ Eleanor Roosevelt

We’re in the city right now, and last night something quite wonderful happened. Our neighbour joined Ben and I and we walked a few blocks down the road in the mild winter air to our local Japanese restaurant.

After a casual and delicious dinner we strolled home again.

That’s it. That’s all that happened.

No biggy, right?

Except that it was. When you live with chronic illness it’s amazing how small your world can become. For the first time in a long while I went out at night. I walked to a destination and home again. And had the energy to do all of that and still feel good about it.

I hardly ever go out at night, and so to combine dinner, friends and walking feels like some small kind of very tasty miracle.

Hooray for feeling better, and for life!
Hugs and love to you, Nicole  xoxo

Only Someone Who Has Chronic Pain or Illness Knows…

“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
~ Susan Sontag, Illness as Metaphor

 

I’ve been unwell since my teens.

There have been so many diagnoses. (I won’t list them all here, although perhaps I should.)

I’ve pursued so many kinds of treatments. (Really. In over thirty years of continuous concerted effort I’ve done more kinds of diets, therapies, herbals, treatments, drugs and totally-out-there-hokey-but-I’m-doing-it-because-desperate regimes than I care to mention. Hundreds of thousands of dollars worth. And I’m still here. So some of it must have worked.)

There have been times where I have only been able to see myself through the prism of loss.

But that’s soul-destroying. It makes you die while you are still alive. And I want to live. So mostly I choose to view my life by framing it up around what I can do, rather than what I can’t.

I have read deeply and widely, in order to get an inside angle on my health. I have come to understand my body better. I have become a master at hiding or managing disability and at creating a life that works on my terms. Mostly.

Some days a pain comes. Or some other symptom. After which I spend hours backtracking and investigating. Was it because of something I ate? A chemical? Lack of sleep? A million other possibilities? Did I do this to myself or make things worse? I’ve lost days to this kind of hypervigilance. It never helps, although it can gift me a temporary illusion of control.

I have a long, long list every single day – of pains and problems and freakish symptoms which it long ago became too boring to mention, even to myself. Mostly it is background noise in my life. I live with pain. I live with the kind of things that would have other folk rushing off to the doctor. After a lifetime of discussing them with doctors and having no resolution these kinds of things become your new normal, and then, eventually, just part of your life.

Mostly, just like other people with chronic or terminal illnesses, I have continued to look quite unremarkable on the outside. Maybe just a bit tired sometimes, or a bit puffy or drawn or pale.

Image from www.wallls.ru

Image from www.wallls.ru

These days I’m actually doing much better. Especially after two solid years of horrendous antibiotic therapy for Lyme. After major surgery last year ( and then the superbug I acquired) and an avalanche of new drugs (and some old favourites) and then Chinese herbs, essential oils, modified diet (again!) and intravenous vitamin C.

I feel like I’ve turned a corner. I can function better, I have more energy than I’ve had in years. Life is opening out a little more for me. People comment on how well I look.

Although that better is comparative.

I still can’t drive. My vision is still impaired. I still need early nights and nana naps to get through the day. I have a horrible startle reflex. When I’m tired. I lose words. I sound like. A badly. Edited film. With pauses and breaks in. All the wrong places. Because. Brain not working properly.

I’m still immuno-compromised. (And please, will you quit rolling your eyes and commenting about how it always seems to be one thing after another with me? Yes, that’s true. Because I am immuno-compromised after so many decades of illness. The bugs that barely register with you or that inconvenience you for a few days still have the power to take me down, or even out. Don’t visit me when you’re sick. Wash your hands more. Practice good hygiene. Rant over.) Incontinence issues? Yep. Not quite nailed the superbug? Yep. Foods that send me spiralling into misery? Yep. Exhaustion? Yep. Pain that wakes me up and keeps me up? Yep. No libido? Yep. Tendon stiffness that sees me hobble when I get out of bed, or up off a chair after sitting for a while? Yep. Pay for increased activity levels with increased night-time pain and exhaustion the next day? Yep.

Yep.

Still, I have coping strategies, and meditation, and healing foods and emergency triage treatments. I have a wonderful local GP and acupuncturist. I have an incredible husband who is my full-time carer (although I hate to think of it like that, it’s the truth.) I have a beautiful group of friends and an online community who lift me up every day.

My life is good. It’s precious and wonderful and I am grateful for every breath.

Mostly.

I am one of millions just like me. People living with or despite conditions and illness. We’re doing our best. For some of us that’s actually pretty messy and awful at times. Most of which you won’t ever see. Some of us can’t get help. Some of us aren’t believed. Some of us don’t have the financial resources or the energy or education or support to even try to get past what ails us. Some of us will fail, decline, die despite help and treatment. Some of us have trajectories that are all downhill.

So, what can you do?

If you’re one of the millions, try to find some small thing each day to focus gratitude upon. Look at what you can do. That’s a big ask at times, but I’ve come to realise that what we focus on magnifies. I’d rather focus on the pleasure of savoring a cup of tea than on the fact I can’t see the bloody thing clearly anymore. When I focus on what still works and what’s still good, peace comes to me. You can heal or endure when you’re peaceful, more than you ever can when you are stressed or angry. (I know this from experience, but I won’t say ‘trust me’ – it’s better if you experience this yourself too, so that you can own it as truth in your body rather than just a concept in your mind.)

If you’re not one of the millions yet, know that it’s entirely possible that one day you might be.

If you’re not one of the millions, please stop pandering that New Age drivel to us about how this is all a beautiful learning experience, or that our souls chose this, or that we somehow created it, or perpetuated it. Or how we can turn this into a wonderful soul-growth opportunity. Or that God only gives us what we can handle. Don’t hang that judge-y guilt-trip on us. It’s not helpful and it’s not kind. Especially when we are having a bad day, which, incidentally, may be invisible to you. If you are one of the millions, stop hanging that guilt-trip on yourself.

Know that if a vegan, paleo, superfoods, raw diet, prayerful contemplation, soul-searching, vibration lifting, better exercise routine, detox or no-negative-thoughts regime actually worked for everyone there would be no more cancer or depression or chronic illness, or genetic abnormality or disorder already.

Don’t hang judgement on us when the network-marketing-product, special diet, cleanse-in-a-box, worked-for-your-neighbour or someone-you-read-about-online cure, doesn’t work so well with us. Or when we just don’t want to try one of those things. Again. For whatever reason.

Don’t tell us we’re heroes or warriors. We’re only dealing with the hand we’ve been dealt. Don’t tell us that you don’t know how you’d ever cope or that we’re incredible the way we are coping. Some days we don’t cope. Don’t perpetuate the myth of the incredible brave-warrior-ill-person. It’s just one more pressure we don’t need.

Please don’t treat us like we’re invisible. Please keep including us and inviting us. Even when we’re unreliable, or can only attend for a short while or not in the way you (or we) would prefer.

Unless you’re going to be mean or judge-y. In which case it’s actually better if we’re invisible.

Let’s not hide illness and disability anymore. Let’s bring it out into the open where it belongs, instead of shaming ourselves and each other around our perceived frailties and failings.

Every single one of us will know illness or injury or critical failure of something we had previously taken for granted at some stage in our lives.

Let’s treat this with kindness. Kindness isn’t a cure, but it’s a very helpful medicine.

Holding you in my prayers and meditations,

Nicole <3 xoxo

The Very Valid ‘Not Coping’ Style of Coping

teapot portrait

Image by Lauren O’Neill. You can view her work here: www.laurenipsum.ie/projects

“It’s funny: I always imagined when I was a kid that adults had some kind of inner toolbox full of shiny tools: the saw of discernment, the hammer of wisdom, the sandpaper of patience. But then when I grew up I found that life handed you these rusty bent old tools – friendships, prayer, conscience, honesty – and said ‘do the best you can with these, they will have to do’. And mostly, against all odds, they do.”  ~ Anne Lamott

 

Hi. Lovelies.

Gee. It’s been one of those weeks.

So, I was sitting in my lounge room yesterday morning, crying. Not blogging.

Crying because I was in agony. Crying because all I wanted to do was pee and when I did it felt like I was pissing razorblades. Crying because everything hurt. Because I was herxing from the antibiotics for my urinary tract and assorted other infections, and these same antibiotics were playing havoc with my Lyme bacterial load. Because of constipation from the pain meds. Because my stomach was so grossly bloated that none of my clothes fit. Because I’d been vomiting from pressure on my stomach from my wildly overgrown fibroids. Because I’d begun to be attacked by Gorn, after two years Gorn-free and hadn’t slept all night.

Crying because of constantly leaking urine like one of those dodgy teapots that always dribble from the spout when you pour.

Crying because it was only three more days until surgery, and instead of dreading it, now it couldn’t come soon enough.

Everything was hard. I was exhausted. Broken. Pain-wracked.

Miserable.

I’d wanted to blog but my brain was empty. I’d thought to maybe do a little work, but I could scarcely sit upright. All my plans were out the window. It was all just mess.

“I’m not coping,” I sobbed to the empty room. “Not coping!”

“NOT COPING!!!!!!!!!!!!!!!!!!!!!!” I screamed that one.

After which I cried some more.

As I calmed down from heaving sobs to simple snivelling, I realised something quite profound.

It wasn’t true.

I AM coping. Not very well, and certainly not with any great elegance or panache. It’s fair to say that I am just limping along right now – held together with duct tape, spit, snot, drugs, meditation, cobwebs and sighs.

Is that coping? Well, I’m still alive. I’m making it through the day. I’m hanging on. When I thought I was at the end of my rope, after a while I saw that the rope was longer.

So I stopped snivelling, wiped my face and laughed at myself. Kind laughing, mind you. The sort where I patted myself on the back comfortingly, seeing myself as an overtired and distressed child. I was flooded with compassion for myself. It’s a completely shit space I’m in, and it’s totally okay if my style of coping is a not-coping style right now.

I want to let you know that it’s okay for you too – if you sometimes find yourself in a not-coping/coping kind of a space. Life is messy and hard and unpredictable. Sometimes we ride the crest of the wave, high on life. Sometimes we are deep beneath the suck and pull of a massive tsunami.

I’m not alone, I reminded myself. I prayed to my loved ones who’ve crossed over to look out for me, and I called on all of my Guides and Angels and God to look after me and my husband and all of our family and friends. (That’s you too, of course!)

Then I went and made myself a cup of tea.

 

Later that same morning, my kind friends Bek and Lizzie popped round for an hour. They brought pre-birthday treats and balloons, and we had a sharing of troubles and laughter.

The balloons themselves had a special message for me. Yesterday would have been my beloved Nana’s 101st birthday. Not only that, each year when I was little, Pa would give me a special balloon as one of my presents. A marbled one of pinks and blues and whites, in an era where most balloons were just one colour. Nana would always have sticky bun, as well as cupcakes with pink icing for me.

My friend Lizzie brought me some of those same balloons Pa used to give me. Bek brought me cupcakes and sticky bun. Coincidence much?

cool party candles

Check out how cool those candles are. The flame is the same colour as the candle!

“If you can’t laugh when things go bad–laugh and put on a little carnival–then you’re either dead or wishing you were.”
~ Stephen King

balloons and cake

Yeah, I know. Those balloons look like weird inflatable boobs. Did I mention it’s been one of those weeks?

I was in pain and my body felt like it had been hit by a truck the entire duration of their visit. But my soul was happy. My heart was full. And after they left I lay down and slept for a few blissful hours, feeling my grandparents watching over me.

If not-coping coping is the best you can do, then that’s enough. And remember, you’re never alone. Reach out to your loved ones, to the Angels, to your friends and family.

I’m thinking of you, and sending love,

Nicole <3 xx

 

 

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.

 

 

Dancing Out Of the Lymelight

Green Dancer by Adriane Pirro

Green Dancer by Adriane Pirro

“Stubbornly persist, and you will find that the limits of your stubbornness go well beyond the stubbornness of your limits.” ~ Robert Brault

 

I’m off to see my Lyme Doctor today, and I’m hoping for a good report.

In the last few months I’ve noticed real and sustained change. I have more energy. People tell me I look better. My brain works and I can access words I’d thought long forgotten. I can read maps again. I can recognise and add numbers after more than twenty years of being terrified of anything to do with maths. Music on the page looks like notes and rests rather than spaghetti with splotches. My reflexes and balance have improved. I have less pain. More mobility. Fewer fevers and other symptoms. Finally I feel that my future is opening out in front of me, when for so long all I have known is the end of the rope and my fingers in a vice-like grip at that knotted end, stubbornly holding on.

I had a moment recently when I knew. Knew for sure that I had turned the corner.

I wa sitting on the edge of my bed, on the evening of the first day of my channelling retreat. It had been a big day, after many big days. It was late. The world was quiet. And I held my meditation mala in my hand, ready to pray and meditate for my students before I turned in for the night.

Suddenly my cheeks were wet with tears.

Here I was, sitting in this familiar room. I’ve held many retreats at this place now. It feels like home, in a way.

But something was changed.

I was changed.

Some years ago, when I ran my first retreat at this place, I had just been given a prognosis of perhaps six months to live. I was in congestive heart failure with dilated cardiomyopathy. My organs were failing. Every breath was a struggle. One side of my face was completely numb from Bells Palsy. Back then I didn’t know I had Lyme. I just knew that I was dying. Every footstep was a struggle. I fought so hard for every conscious moment. I was worried that I would never be able to do my work in the world. Never share my stories. Never reach out and help more than just this handful of people. Never have time to be well enough to enjoy life, or to make up to my husband the many years of our life we had lost already to this wretched illness.

I hummed with a brittle hope mixed with equal parts of despair.

Now, here I was, a few years post-diagnosis, with strength in my bones. No chest pain. No struggle for breath as I walked up an incline or a few steps. Inside me I could feel grace and power and energy. I could feel life force. I could feel possibility.

Somehow I’ve moved from dying back to living. It’s like someone flicked the headlights to high beam and instead of fumbling along the road in the dark I have a clear run, and a well illuminated path opening out in front of me.

All because some brave doctor was prepared to go out on a limb and diagnose me with Lyme. (But they wouldn’t treat me. It was too controversial, they said. A risk to their career.)

Another brave doctor treated me. When they got closed down there was another doctor there. And then another. So much secrecy. So much clandestine medicine. All to give me my life back without ruining theirs.

It saddens me that this disease is still so poorly recognised, that the effective treatment protocols for Lyme and co-infections are questioned, that people like me go undiagnosed for miserable decades, and even after diagnosis Lymies struggle to find anyone willing to actually treat them. It breaks my heart to know that Lyme doctors are persecuted for doing their best to help their patients find a path back to wellness.

The Lyme community is an awesome one. We share information with each other, and provide support when there is little to be had within our own networks or families.

Image from boxyblogs.com

Image from boxyblogs.com

I’m one of the lucky ones. I have been able to find a way forward. I could afford treatment. I had the ability to research and educate myself about health and healing. I’ve had a roof over my head, some income still, and a husband who has stood by me through the worst of times.

Finally, I’ve turned this corner.

I can’t quite find the words to tell you how that feels after more than thirty years of being prisoner to this thing.

My legs are shaking as I stand at the unlocked door of the cage that has held me trapped for so long. My hands are trembling as I push against those bars so that I might step towards freedom. I need this to be true for me. If it’s a dirty trick I don’t know how I’ll cope.

I’ll confess too, that there is a part of me holding back, waiting. Just in case… I need for this to be a lasting change, rather than the calm eye at the centre of a storm.

I’m still so full of dreams and plans. I’m humbled and hopeful that this might truly be my second chance.

I pray it goes well for me today. Here’s hoping.

Much love, Nicole <3 xoxo

Where’s Your Focus?

Image from reddit.com

Image from reddit.com because, well, pirates! And you know how I love pirates. 🙂

“Very occasionally, if you pay really close attention, life doesn’t suck.”
~ Joss Whedon

On Friday I posted about a beautiful ordinary day, and how much I had enjoyed such simple things as a trip to the farmers’ markets, clean sheets on the line, sunshine and crisp ripe apples.

After that post I received two emails, extracts of which are below:

That might be fine for you, Nicole, but not all of us live in Byron Bay. Not all of us have a beautiful life.

and

You obviously aren’t that sick, although you say you have lyme. No person with a chronic illness could enjoy the kind of life you have.

I guess that I need to be honest then, and admit that not all of my day was what you might consider beautiful. In fact it was downright ordinary. But I omitted those details from my Friday post.

I can list those things here:

  • As a result of my current course of drugs I have neurological urinary incontinence. I wore an adult diaper to the markets.
  • As a result of the drugs, the bacteria dying, and my poor liver not coping with increasing levels of toxicity I was covered head to toe in a fierce rash and weeping eczema. Agonising, and ugly too.
  • I was plagued by a sense of impending doom – the kind of feeling a psychic gets when they know something is about to happen, over which they have no control, but by which they will be impacted.

Here’s a photo of me a week ago, just before my last round of IV drugs. It was the best I’d felt in months and I was teaching myself how to take a selfie so I would have a picture of me for my new website. It was fun. I put on lipstick, and wore a jacket that made me look dressed for going out. I like this photo. I have clean hair, I’m standing in my garden on a bright autumn day, and it’s a headshot, so you can’t see my pyjama bottoms or my big-girl pull-up incontinence pants. About four photos later I worked out how to look into the camera instead of at my hand…

Nicole Cody

And here’s a couple of me taken last Thursday in Brisbane. Just before beautiful ordinary magical Friday. Here’s the rash that began to creep up my limbs and made me want to claw my own flesh off my bones.

lyme rash hand

Here’s my face, which was covered in blotches. I won’t share the photos of the weeping, bleeding rash behind my knees, under my arm and right across my chest and left breast. My face went that way too, by Friday morning.

Why am I sharing this? I have lived with chronic illness and daily misery for thirty years. That thirty years has taught me a lot. Once upon a time I would have been the person who sent plaintive, judgemental or whiney messages to others, whom I felt had no idea how much I was suffering and no right to say that life was good, when it plainly wasn’t.

But that kind of thinking ruins any chance you have of having a rich and satisfying life.

So I adjusted my focus.

No matter how crappy my day gets, I look for beauty. I look for the small pleasures, the tiny details of comfort and joy, the things that will make my day memorable, or at least tolerable.

It’s become one of my superpowers. And it could easily become one of yours.

We can’t always control what happens to us, but we can control how we react, we can control our thoughts, and we can control our focus.

On Friday I didn’t focus on my distress and discomfort. In fact, I worked hard to not focus on them and to look for the beauty around me.

As I ate my dinner in front of the fire early on Friday evening I reflected that it had indeed been a very beautiful ordinary day. That’s my secret. I know that every day can be a beautiful day, or at least have elements of beauty hidden within it, just waiting for an observant eye and an open heart.

So, I have to ask you…

Where’s your focus?

Image from quotesicons.com

Image from quoteicons.com

One of those nights…

“She used to tell me that a full moon was when mysterious things happen and wishes come true.”
~ Shannon A. Thompson

Tonight will welcome May’s full moon.

I love a full moon. Unfortunately so does lyme disease. Many lyme sufferers find an acute ramping up of their symptoms in the day or two before a full moon.

Last night was a hell night for me. At the edge of sleep I woke up to that horrid wide-awake place. After which there was pain so bad that sleep, if I could have found it, was out of the question anyway.

Today I am barely functional.

It goes like that sometimes.

I’ll try and catch a nap today, and then brace myself for tonight. Or plan to be awake anyway and have a good book to read, a meditation to do, or some other welcome distraction.

It’s been a long while since I had a night like last night. They used to be a regular thing. So I know I’m improving. Gee, I HAVE improved so much. But lyme disease and its co-infection friends are still reminding me they’re here.

Truth be told I’m a bit over it today. A bit cranky. A bit disgruntled. A bit disappointed because of all the things I’d planned for today that will undoubtedly fall by the wayside now.

On the upside? The moon was beautiful last night, and the air, after all our recent rain, was sweet and cool and earth-scented.

To watch the transit of moon and stars across the dark bowl of the sky was a decent consolation prize.

A Moment of Perfect Peace

Crescent_Moon_(2558144570)

“Spirituality is not to be learned by flight from the world, or by running away from things, or by turning solitary and going apart from the world. Rather, we must learn an inner solitude wherever or with whomsoever we may be. We must learn to penetrate things and find God there.”
― Meister Eckhart

Very late yesterday afternoon I had a sudden urge to go and water my vegetable garden.

It had been a difficult day, after a series of difficult days. I’ve been in tremendous pain from my current lyme medications, and doing my best to just simply sit with that pain. I’m not fighting my pain. I’m merely breathing and being aware of the pain within my body. The pain is so intense that normal functioning is a challenge. Instead I have given in to what is. I am riding each wave until I am thrown up onto the shore once more.

It’s been an enlightening journey, and when I have the words I’ll share some of that journey with you.

But for now I am tired, after so many days of so little sleep. So let me instead tell you about watering the garden.

It was late afternoon. You know, that soft afternoon light, just before dusk comes creeping over the horizon. I uncoiled the garden hose, turned on the tap and walked down the hill to my raised vegetable beds. My feet were on the bare earth, and the grass beneath them was soft and cool. The air was filled with the song of frogs and cicadas, and the last of the birds. Mr Grunty, our resident male koala, was grunting and barking and being noisy from his spot high in the gum tree just outside the home paddock fence.

A bat flipped past, so low that I could hear the flap of its leathery wings.

All this time I am wracked with pain. My face is contorted and I can’t see out of one eye. My ears pound, and my bones are on fire. Every so often my nerves jangle as though I have been tasered.

I am standing in the garden in agony, tears streaming down my face, trying to hold the hose steady on my young plants. I wonder for a moment why I have bothered to drag myself out here at all.

The air becomes scented with mint and nasturtium. I can smell the fragrant sun-warmed tomato foliage as the water hits it, scattering cool drops onto the mulch beneath.

Image from Goodness Is

Image from Goodness Is

Above me, a crescent moon has risen. Almost directly above the old hoop pine that shelters our little farmhouse.

In that moment, hose in my hands, feet in the grass, sounds of the close of day, moon above my head, body on fire, ragged breath, head full of pain, a great peace descends upon me.

A peace so profound, a connection so complete, that more tears spill. The pain is still there. Nothing about my physicality has changed at all. But beyond that, encompassing all of that – all of me, is a wonder and awe at the beauty and grace of this universe, and of my place within it.

My pain doesn’t matter. My illness becomes irrelevant. They are merely what’s happening to me at this moment. My soul, connected to everything and everyone, is always at peace. Even in great pain. Even when it feels like my world is undone.

The knowledge fills me up. The truth seeps into my very cells.

I carry that peace back into the house, and it quietens my mind. The pain is still there. But now there is also this other presence. This great comfort.

I feel like I have touched the face of God.

Or perhaps, God touched my face.

Or it was all the same thing…

And that presence is still here with me.

All of it, every breath, every moment, is love.

The Golden Light  by bnilesh

The Golden Light by bnilesh

 

Exhausted, with Aprons…

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“If you want your children to be intelligent, read them fairy tales. If you want them to be more intelligent, read them more fairy tales.” 
~ Albert Einstein

 

What a lovely weekend I’ve had. Our friends and their children visited the farm, and to my delight I found that these particular children had a great love of rambling walks in the countryside, board games, stories, an exceptional fondness for fairies and pirates, and a deep appreciation of yummy food, all of which are among my favourite things! 🙂

Ten-year-old Hannah was also very keen to strap on an apron and help in the kitchen, and so we practiced knife skills, invented crazy salads, decorated desserts with strawberries and made endless delicious treats, including Blueberry Crumble Slice, which was a huge success with her blueberry-addicted brother, Mitchell.

Blueberry Crumble SLice

Today, I’m going to catch up on all that energy I expended. The dogs are equally exhausted after all that fun so we’re going to stay snuggled up on this rain-sweetened frosty morning, drink tea, and write. Well, I’ll be writing, and the dogs shall be lending moral support, bless their furry paws!

Tomorrow, after I am caught up on sleep, I shall share a particularly delectable recipe for Nutella Cheesecake, which was the dessert we enjoyed on Saturday night. I promise it’s both easy and divine. 🙂 Mmmmm, cheesecake…

Lyme and Making Plans

“She had learned the lesson of renunciation and was as familiar with the wreck of each day’s wishes as with the diurnal setting of the sun.” 
~ Thomas Hardy, The Mayor of Casterbridge

“Success is when everything that goes wrong, fits in your plan.” 
~ Gary Rudz

 

When I was diagnosed, finally, with Lyme disease, back in January 2013, we did a lot of shuffling of plans. A much-looked-forward-to holiday was called off. I cancelled workshops and retreats. My clever PA began adding a footnote to each appointment she made for me, letting people know that I was being treated for Lyme and that I may need to reschedule their session at short notice, depending upon my health on the day.

I’ve had to do a lot of that anyway, in my adult life. Cancel things. Say no. Pull out at the last minute. Always because of unreliable health. Too often that has made me the unreliable friend, family member, or neighbour. The only area I have managed to be mostly reliable has been work. But doing that has meant creating a business where I can work from home, part-time, and where everything else suffers so that I can get that work done.

Sure I’ve gone ahead sometimes and done the thing, but too often afterwards I’ve paid the price. An afternoon of socialising might mean three days of crippling exhaustion. A few hours of gardening could leave me flat out for the rest of the week.

“Gee Nicole,” a friend said once, frustrated at my lack of energy, “we all get tired.” Yes, we do. But Lyme tired is something else. Lyme tired is truly chronic fatigue. Lyme tired is neurological fatigue, as well as physical. It’s the kind of tired where after just a few hours work I am in bed by seven and asleep by ten past. And that’s on a good day. 🙂 Lyme tired is the kind of tired where I can struggle with basic daily living – like showering and dressing, holding a conversation, preparing a meal or attending to the simplest kinds of housework. The kind of tired where my arm stops working, or my eye starts twitching, or my brain goes on strike.

My exhaustion is an ocean, under the influence of some great unseen force. Sometimes it recedes, leaving a gleaming bright shore of possibility. I get stretches where I can do so much more, and I settle in to that as my new normal. But then the tide comes back, and I find myself with a smaller and smaller window of available time where my brain works, or my body works and I can get things done.

To be honest, I’d hoped that this far into my Lyme treatment, an aggressive protocol of drugs and herbs, that I would have been back to much more glorious planning again by now. That I would be saying ‘yes’ more often, and ‘no’ much less.

But as I’ve travelled this road I’ve come to realise that there’s still so far to go. I might be in this hazy half-life place for a while yet.

So, I’ve gotten smarter.

Now I make plans EXPECTING to be tired. I create my business around what I can do on a bad day, or an average week, rather than what I might be able to do if I had a sudden upsurge in energy or was miraculously well again. I plan socialising around my best times (mornings), or for early nights.

I am planning my whole future around having a flat battery.

It’s not pessimistic. I fully intend to get back to well. Or as well as it is possible to be, for me. But oh how it takes the pressure off, knowing that I am catering for low energy, or sudden patches of incapacity.

Anyway, my heart is on the way to being completely normal, and I have my brain back. There is no longer an imminent threat of dying. I can write and think and dream again. And I’ve always been able to do psychic work – no matter how ill I’ve been. That’s a gift that comes through me, and it’s never influenced by my health. In fact, it has often been the thing which has energised me and kept me going during my darker days. So, planning is possible. As long as my plans make space for down-time, disaster and the unexpected.

I even changed my whole business model, so that I can run an ever-expanding enterprise from bed, on a few average health days a week. Imagine how much lovely free time that will give me as I move back towards well. Imagine how much writing I will be able to get done. How much living. That’s exciting for me!

Maybe you don’t have lyme, or some other kind of incapacitating situation in your life, but I can guarantee you that making plans based on reduced energy and reduced input isn’t a bad thing. Instead it’s a plan for life that makes room for life. It’s about designing a life where there is space for you to grow, to heal, to love, to change your mind, to move in new directions, to spend the afternoon napping, or with your lover, or catching a series of perfect waves.

I’m all for planning. Planning moves us purposefully in a direction of our choosing. It enables us to be effective with the use of our time and resources. It helps us to actively design our lives.

But I am also for living honestly, and being realistic about what’s on our plates. I am also for being kind to ourselves. I am all for making room to breathe rather than heaping responsibility, duty and endless tasks upon us.

What kind of plans have you made in your life?

Have you crammed so much in that there is no room for downtime, rest or fun?

Lyme has proved to be a wise teacher for me. I hope that by sharing my story, it also helps you to be kinder to yourself, to be more trusting of the process of life, to focus on your most important priorities and still leave space.

All sorts of miracles and wonderments can happen when we leave enough space for them. It’s not up to us to have to fill in all the blanks. Where would be the magic in that?

Much love to you, Nicole xx

Life-is-a-miracle