Two Steps Forward…

 

2014-07-21 09.45.26

“Progress, of the best kind, is comparatively slow. Great results cannot be achieved at once; and we must be satisfied to advance in life as we walk, step by step.” ~ Samuel Smiles

 

It’s been a frustrating few days for me.

I’ve recently changed Lyme doctors, and begun a new regime of drugs and herbs for my Lyme and co-infections. I’m filled with optimism for my return to health, and although I’m tired it had all been going well until the tail end of Monday.

I’d taken the first dose of a new drug that morning, and been fine.

But suddenly on late Monday afternoon my speech began to slur, words vanished from my brain, my eyes blurred until I could not see at all, I walked like a drunk woman and I forgot how to do the simplest tasks, like cleaning my teeth. My night was filled with hallucinations. I was sure that lizards (Lizards? Oh, Nicole!) were hiding in the bedclothes and coming out to bite me when the lights were out. Of course there were no lizards, just the sting in my nerves and skin from the herxing as the bacteria within me died and flooded my body with their nasty neurotoxins.

A little bit scary, but also a familiar road. This happened last time I took this particular medication too. But this time my reaction has been less severe, my pain less too.

All my symptoms are finally settling down again, but it’s a good reminder that with Lyme treatment it’s so often two steps forward, one step back.

And you know, two steps forward one step back is STILL one step forward when you do the math. :)

PS – Don’t you love that photo of Bert? He looks how I feel!

Image from Inspirably

Image from Inspirably

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

 

Nurture in cups and bowls

Pumpkin soup

“I think that women just have a primeval instinct to make soup, which they will try to foist on anybody who looks like a likely candidate.”Dylan Moran

 

It’s been a hard two weeks for me. Meds issues. Doctor issues. Mobility and pain issues. Crushing insomnia. Nausea. And a myriad other bothersome things. Ah, the joys of Lyme disease and all that entails… It’s like my body decided to rifle through the junk drawer and bring out all the remnants of crap I thought I’d dealt with by now.

I’m back to two finger typing again, so that means blogging is back on my agenda!

Thankfully I am home at my farm, and it’s a farm with a freezer full of kindness I had made as gifts for other people. All things my husband has been able to defrost and reheat for me:

Pumpkin Soup (That’s it in the photo above!)

Chicken Soup

chicken soup

Bone Broth made into easy meals with noodles and vegetables

bone broth soup

Spaghetti Bolognese

spaghetti-1

Lemony Slow Cooked Lamb Shanks with some mashed potato and vegetables from the garden

lamb shanks lemon

Nana’s curried sausages, made with homemade stock

curried sausages

Easy Thai Chicken Soup

thai chicken soup

I’ve also enjoyed a few meals of simple but delicious Soft Boiled Eggs and Toast Soldiers, which Ben has made his own signature dish. (Eat your heart out, Master Chef!)

soft boiled egg and soldiers

If friends and neighbours have come round for a cup of tea we could still offer them some tasty Easy Date Loaf or a piece of Moist Boiled Fruitcake as I had both of these in the freezer as well.

scones-and-fruitcake

By the time I’m back on my feet I think I’ll have eaten everything I’d put by, but gee I’m glad  took the time to do that cooking. Ben’s a wonderful husband, but let’s just say that cooking’s not his greatest strength! :) We’ve both been grateful for all of those frozen and easy-to-put-together meals.

Maybe there’s a recipe here that you might find useful too – either to make for yourself, or to take to a friend or family member who could use a little extra kindness and support right now.

Lastly I’ve been enjoying a little Warm Spiced Turmeric Milk made fresh each night to help me sleep and to kill more Lyme bugs. I heartily recommend it!

turmeric milk

I have missed you all very much, but I’ve held you in my daily prayers and meditations, so we’ve not been that far apart from each other.

I’ll record you a guided meditation today too, as I have a couple to catch up on, so watch out for that on the blog tomorrow. Lots and lots of love, Nicole xx

A Quick Update On Me!

Image from Modern Kiddo

Image from Modern Kiddo

“To conquer frustration, one must remain intensely focused on the outcome, not the obstacles.” 
― T.F. Hodge

“A bruise is a lesson… and each lesson makes us better.” 
― George R.R. Martin, A Game of Thrones

“The lotus is the most beautiful flower, whose petals open one by one. But it will only grow in the mud. In order to grow and gain wisdom, first you must have the mud — the obstacles of life and its suffering. … The mud speaks of the common ground that humans share, no matter what our stations in life. … Whether we have it all or we have nothing, we are all faced with the same obstacles: sadness, loss, illness, dying and death. If we are to strive as human beings to gain more wisdom, more kindness and more compassion, we must have the intention to grow as a lotus and open each petal one by one. ” 
― Goldie Hawn

 

Hi Lovelies, I thought I’d better update you on why I’ve been so quiet…

One of the drugs I’ve been on for my Lyme treatment has an unfortunate side effect in some people of shortening and stiffening ligaments and tendons. As they lose their elasticity they become prone to tears and rupture.

A few weeks ago I tore ligaments in my right knee as I was getting into bed. It’s healing, slowly, but it has certainly slowed me down. Then on Monday night after I came home from my Lyme Doctor I had a tear and a bleed in my left Achilles tendon caused by Harry the dog bumping into me.

Rolling over in bed a few nights later I ripped ligaments in my right shoulder and injured tendons in my right thumb.

I would not be lying to say that right now I’m feeling a little over it. :( If I were really truthful, I might even admit to having indulged in a full-on howly little emotional breakdown for a minute or two.

So for now I am on bed rest, being well looked after, and trying not to injure myself further until these drugs get out of my system.

I’m also not having such a fun time on the new ligament-friendly lyme meds I’m on either (think vomiting, pain, blurred vision and misery) although that’s a whole other story…

But on an up note I AM getting better. It’s just a lesson in patience right now, like typing this blog with my left hand so at least it’s done, even if it is a very slow process.

This morning my mum rang, and gently suggested I should try and blog something, anything, just to let you all know that I am okay.

I am mostly okay. :) Really.

Forgive me if my blogging remains a bit erratic until I get my body under control. We’re working on it, but like most things, it shall take time. Still, I’m already feeling a bit brighter. Fingers crossed this uphill trend shall continue. I’ll post as I can, so stay tuned.

Thinking of you and sending love, Nicole xx

PS – here’s a useful little quote for times like these:

o-INSPIRATIONAL-QUOTES-facebook

Slowly Slowly Better…

Image from Mental Floss

Image from Mental Floss

“I saved a man’s life once,” said Granny. “Special medicine, twice a day. Boiled water with a bit of berry juice in it. Told him I’d bought it from the dwarves. That’s the biggest part of doct’rin, really. Most people’ll get over most things if they put their minds to it, you just have to give them an interest.” 
~ Terry Pratchett, Equal Rites

“Though the doctors treated him, let his blood, and gave him medications to drink, he nevertheless recovered.” 
~ Leo Tolstoy, War and Peace

 

I’m off to see my Lyme Doctor today. Another date to tick off my calendar, another date to record my progress, update my meds and share my journey with a physician who truly cares.

Slowly, slowly I feel like I am being returned to myself. I’ve made a few short solo trips this past week, driving myself in the car. That’s a major breakthrough. I’ve begun a slow return to work. I’m having fewer terrible days, and more stretches of consistent energy. I’m writing. A lot. And that’s the most exciting thing of all.

There’s still a long way to go, and I’m still exhausted easily and often, but oh, how hopeful I am that this slow journey will take me back to the flow of life, where I can be fully immersed instead of simply cheering from the sideline.

I’ll keep you posted on my progress. Thanks again for your love and support, and for being here with me through all of this. Much love, Nicole xx

 

Update from Lyme Land

Image from Norway Street

Image from Norway Street

“Every day you may make progress. Every step may be fruitful. Yet there will stretch out before you an ever-lengthening, ever-ascending, ever-improving path. You know you will never get to the end of the journey. But this, so far from discouraging, only adds to the joy and glory of the climb.”
~ Winston Churchill

 

It’s been eighteen months since my Lyme diagnosis, and fourteen months since I began treatment with an intensive regime of antibiotics and specifically targeted herbs.

On top of all of the other good things I was already doing that had sustained my life, but not healed me.

For those of you who’ve been following my journey, you’ll know it’s been a long and tough road. And I still have a long way to go. Perhaps another two years of treatment yet. Maybe more.

But truly, I can FEEL the progress I’m making now. Little by little I am beginning to reclaim my life. I am having, on balance, more good days than bad. The bad days are bad, but not nightmarishly so. I can cope with them.

I am still suffering pain, and insomnia. I still suffer from periods of intense fatigue. I have days where I can barely lift my head from the pillow and the night brings only more pain and no relief. But on a good day I have a sense of returning strength. My brain works – almost all the time. I have the energy to do a little housework, to do a little gardening – and not be completely wrecked afterwards.

I’m writing. And writing. And writing.

I am beginning to think in possibilities. There is once again room in my life for dreams.

Above all, I want to say thank you. For sticking with me. For sending me messages of support. For helping me hang in there when I truly didn’t think I could go another step.

I have no idea what ‘well’ will ultimately look like for me, but I’m excited to have the chance to find out.

Much love to you, Nicole xoxo

PS: I love the wisdom of the quote below:

When-things-fall-apart-consider-the

Inviting Help into Your Life

Showing the way

“I do believe in an everyday sort of magic — the inexplicable connectedness we sometimes experience with places, people, works of art and the like; the eerie appropriateness of moments of synchronicity; the whispered voice, the hidden presence, when we think we’re alone.”
~ Charles de Lint

 

Divine Guidance.  Signs. Help.  Answers to prayers.  Last-minute reprieves. Dramatic turn-arounds. Miracles. Most of us have asked for them at one time or another, but are we actually heard?  Can we really reach out like that and expect things to change?

I believe that the answer is yes. But it is useful to understand the process.  Our job is not only to ask. (I’ve written about that process here: Asking for a Sign) Our job is also to be receptive to answers, no matter what they look like, or how they come to us. Our job is to ACT on those answers and synchronicities. Our job is to know that we need to trust in Divine Timing. Especially when what’s happening in our lives is not going to OUR timing – the timing we want for ourselves and our plans and dreams.

Let me explain…

Back in November 2012,I stood on a moonlit beach in Thailand thinking of a particular set of circumstances in my life. My beloved Nana had just died, and I would not make it home for her funeral. And earlier that day, when I still suffered from congestive heart failure, I’d been crippled with severe chest pain. The pain had gone, but it had left me frightened and bemused. Once again I’d hit a wall with my health, and no matter what I’d tried (and the list was exhaustive) nothing was working. I realised I had reached my limit. No matter what I did, I was dragging myself through life, not enjoying it at all, but trying my best. For my husband. For my friends. For my clients. Every day was a struggle. And every day I was getting worse. Again.

I missed my Nana. I felt like more of my cheer squad was now in heaven than down here on earth.

My deteriorating health was impacting my marriage, my work, my very ability to draw breath. I knew in my heart I couldn’t go on like this. I didn’t have it in me any more. I’d found the end of the line. I stood there on that beach, oblivious to the beauty, with tears streaming down my face and I said, “Do you know what, God? I just can’t do this anymore. I’m done.”

I was ready to go home.

Image by Richard James

Image by Richard James

I meant it.  I said what was in my heart.  There was no neediness. No wanting or hoping. So it wasn’t really a prayer, or even a request for help.  I just said it how it was.  A definitive statement without expectation. I was squared away with dying. In fact, I fully expected that death was where I was heading. I was okay with that, sad as I would be to leave my husband. I was so very tired. I had no fight left in the tank. I really was done. I turned on my heel, went back to our room, and then forgot all about this seemingly one-sided conversation in the days ahead.

Less than a week later, I bumped into a friend in Bangkok who told me that she’d been having thyroid problems.  She mentioned that it could sometimes cause chest pain.

We talked some more…

Oh, she said. You need desiccated pig thyroid, not that other stuff you’re on. There aren’t too many doctors back in Australia who prescribe it, but there’s one in Brisbane. And she gave me his name.

A few days later I was back in Brisbane, and I called that number. By some miracle I ended up with an immediate appointment with a doctor who usually took a year to see. In fact, I’d tried to see him three times during the past ten years and been unable to get an appointment at all. But he was in his office, it was a Friday afternoon, his secretary had gone home with the flu, and he’d just had his last appointment of the day cancel. Could I come in straight away?

I could, and I did.

Before I saw him I had to fill in a very long and exacting health history. Standard procedure for doctors who think outside the square.

I wrote it all down. All thirty years of it. Something I hadn’t bothered to do for a long time.

He called my name and I went into his office.

I looked around at the pictures and the box of toys on the floor while he read my history. It took a very long time.

Finally, he looked up.

“This is textbook Lyme Disease,” he said. “Ever been tested for it?”

I’d never even heard of it.

He gave me forms so I could send off some blood samples, and that was the day I began to get my life back.

He was right. I did have Lyme Disease. I told my sister. She stumbled upon some information concerning another doctor who was about to open a new clinic, specifically treating this illness. I was one of the first patients to be seen.

These two physicians changed the course of my trajectory forever.

Now I am healing.

One day I fully expect to be well, whatever that may look like.

Why am I telling you this?

Because I know that somewhere, right now, someone is reading this who needs to know that they are not alone. That our thoughts and prayers are heard. That answers sometimes come from left field, and in manners that we could never have imagined.

Sometimes we need to ask for help. Sometimes we need to surrender.

And it usually doesn’t happen in the timing we’d hoped for.

But…

…wherever you are at, know that miracles are possible.

Change is possible.

Help is possible.

Healing is possible.

And you are worthy of all these things.

Sending you much love, and holding a candle for you in my heart, Nicole xx

Image from Vastu Chai

Image from Vastu Chai