A Little Lyme Recovery Update

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“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 S. Churchill

 

I can honestly say that I’m improving as I heal from late stage Lyme disease. It’s noticeable. To me, it’s remarkable. Bittersweet, humbling, world-expanding.

In November 2012 I was dying. I suffered from dilated cardiomyopathy, congestive heart failure and my organs were slowly shutting down. No-one really knew why. I had lesions on my brain. I struggled to walk. I couldn’t drive. I had uncontrollable Hashimoto’s thyroiditis and the hormone levels of a ninety-year-old nana. Things that I’d held to as my last bastions of humanity were being stripped away from me, worst of all my capacity to write and hold a story in my head. I clung to life, such as it was. The only things working for me were my marriage and my psychic work. Both endured, despite my increased limitations.

In December 2012 a wonderful doctor diagnosed me with Lyme Disease, a condition I had never heard of. I was diagnosed clinically, and then by bloodwork sent to an overseas laboratory. I felt ecstatic to finally have a diagnosis. I was told there was treatment!

And then my diagnosing doctor announced that he could support my many ailments, but would not treat my Lyme Disease, because it was ‘controversial’.

WTF?????

Seriously. There is a condition. I am diagnosed. By a well-regarded and very competent doctor. I am DYING. Treatment is controversial, so sorry. Can’t do.

In a first-world country. In 2012. A disease with a treatment protocol, and I can’t have it?

It beggared belief.

I wanted to be well. I hungered to be well. I was dying. I didn’t have time to muck around. I found another doctor.

That doctor saved my life with an aggressive campaign of antibiotics, antimicrobials and antimalarials.

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He was shut down before my treatment protocol was finished.

I found another doctor. Resumed treatment after having slid terrifyingly backwards while being unsupervised. I began to improve again.

That doctor closed down his practice.

I found a doctor prepared to treat me ‘under the radar’ and in ways that would not jeopardise their licence. But then they couldn’t keep offering me the treatments that worked.

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Each time I improved a little more. Thanks to these champions of medicine who risked their own licences and careers to uphold their medical oath and treat me and others like me.

Meanwhile I worked with acupuncture and herbs. I meditated and visualised.

My lyme doctors kept being shut down or unable to offer me effective treatment, but because of their brave actions my health has slowly been reclaimed.

Here I am now, alive. My treatment regime now is herbs, essential oils, diet, acupuncture, meditation and energy work. I continue to improve.

But let me put that in context:

Things that have improved since January 2013:

  1. No longer dying! (Yep, I rate that pretty highly.)
  2. My heart is almost back to normal, although I still have pain and inflammation of the lining, which has resulted in a recent hospital stay. Again.
  3. I can write, and hold a complex story-line in my head.
  4. My Hashimoto’s has resolved enough that I no longer need thyroid meds.
  5. I am no longer on any drugs.
  6. I am seizure-free.
  7. Gone from 17 brain lesions to 3. Those three are shrinking too.
  8. Massive, massive improvement in cognitive function.
  9. Short and long-term memory working better.
  10. I can do maths again (after over twenty years of not being able to place numbers sequentially or do basic math tasks).
  11. I have more energy for daily living, and can now do small amounts of exercise.
  12. My capacity for work is now ten-fold!
  13. I can forward-plan without having to take into account the high likelihood of croaking it anytime soon (except for normal statistics and variations, of course).
  14. I am sometimes well enough to drive.
  15. My food allergies and intolerances have gone.
  16. My pain levels have diminished significantly.
  17. My incapacitating frequent headaches are down to an very occasional blind-siding incident.
  18. My vision is almost normal, except when I am tired.
  19. I am arthritis-free.
  20. Liver and kidney function and all bloodwork vastly improved. Vastly!
  21. I am able to have an occasional late night, an occasional alcoholic drink, an occasional socialising event like a normal person would.
  22. I can climb stairs and hills and still breathe. No chest pain. No breathlessness. No recovery time needed. Exercise is now my friend.
  23. I can follow a movie, read a book, hold a longer and more technical conversation.
  24. My balance has significantly improved and I can actually walk up and down stairs unassisted and safely. Balance not good enough to wear any kind of heel yet, but that’s okay. Flat shoes are safety shoes!
  25. I am well enough to travel again.
  26. I have glimmers of libido. (Talk to any chronically ill person and their partner and you’ll know what a big deal this is!)

Things I’m still working on:

  1. My sleep is often interrupted by pain. Deep pain in bones and nerves. Pain that makes me whimper. Aching pain that won’t resolve with meditation or medication. Not every night anymore, but enough to be annoying and limiting.
  2. Occasional neurological bladder incontinence. Yep, unexpected peeing of my big-girl pants. It’s very occasional. Which means almost impossible to plan for. Truly, you can’t die from it so overall it’s not so bad.
  3. Energy levels – I rise early, but am also in bed most nights by 8pm. Sometimes 6pm. Sometimes 4pm. That’s not normal! However, in my waking hours I get so much done these days. It’s thrilling. Zzzzzzzzzzzzzzzzzzz.
  4. Startle reflex. I am jumpier that a ‘Nam Vet. Magnesium helps. Meditation helps. But still. Awful. And makes me a horrible passenger, let alone driver.
  5. Driving. I’m still not really doing it. My reflexes and balance are not flash yet. Peripheral vision? Awful. I am good with known routes in low traffic times and where parking will be easy. Brain processing speed? Slow. My brain can’t process night driving at all. Too much going on. I can’t drive when tired. I am almost always tired.
  6. Optic nerve issues and occasional loss of vision in left eye. No biggy, but annoying.
  7. Daytime pain. Sigh. Yep, still got it, although it is improving. Stabby eye pain. Heart pain. Leg pain. Foot pain. Ice-pick headaches. Sudden severe nerve-pain like electric shock.
  8. Memory-gone-on-holidays moments. Especially when tired.
  9. Brain overwhelm from too much stimulation. Which then leads to poor sleep.
  10. I get tired really easily. I still can’t live like a normal adult. I can have a late night if I have a quiet week. (My idea of late is 10pm!) Big days of work? No problem. But need big days of rest and early-to-bed.
  11. Weird symptoms that revisit every so often. Think rashes, spasms, pain and unexplained annoying symptoms. Too long a list to mention, but they are now occasional rather than usual events.
  12. Libido. God, I miss that. What is sexy to me these days is the idea of a long uninterrupted sleep from which I wake refreshed. Sleep? Mmmmmm! Mind you, small improvements. After so long of a completely flat battery, any kind of spark is noticed and appreciated!

My life gets better all the time. I am a master of optimism, flexibility and working within my limits. I deal in reality but expect miracles to show up. And they regularly do.

I am healing from lyme.

Wherever you may be in life right now, know that change is always possible. Believe in the impossible until it becomes probable. Don’t give up on yourself, or on your dreams. Defy the odds. I have. You can too.

All my love, Nicole ❤ xoxo

The Slow Climb Back

“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 S. Churchill

 

In the end, it went well with my lyme doctors yesterday.

Thanks to everyone who sent me well wishes and support. It means so much to me. 🙂

Here’s the good news. I AM stronger. My organs are functioning better. My brain is working better. My heart health continues to improve. My immune system and hormonal systems are slowly coming back to life. Some are still not looking great, but overall my upward trend is clear.

I was close to dying when I finally began treatment, and there is much collateral damage done after thirty years of undiagnosed lyme disease. It’s still a long road, my doctors stressed. But they stressed this as they smiled and talked about how far I’ve come and what my next treatment steps will be.

We’re giving my body a rest from treating lyme and co-infections now. Instead we are rebuilding. Strengthening my body’s natural functions and defences. Rebalancing and creating a healing space. Improving all of my detox pathways.

There will be time in the future for more aggressive lyme treatment, but not now.

And when that time comes I will be stronger still. My body will cope better. It won’t need to be so brutal.

One way or another, I am winning this fight.

Slower than I would have liked (I’m in a hurry to get my health back. Wouldn’t you be?), but I’ll take slow progress over no progress any day.

I have my eyes firmly focused on the road ahead. No looking back for me.

Image by Semmick from reflectgrace.wordpress.com

Image by Semmick from reflectgrace.wordpress.com

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

 

The Blessing of Sleep

Sleeping Beauty by Foxfires

Sleeping Beauty by Foxfires

“Even a soul submerged in sleep 
is hard at work and helps 
make something of the world.” 
~ Heraclitus, Fragments

 

No proper blog today. Something miraculous happened last night. My friend Sally came over yesterday afternoon and brought me a rock she’d found for me in Nepal. As she left a gentle rain began to fall, and I began to find myself getting sleepier and sleepier.

Still clutching the rock I hopped up onto my bed, listening to the soft fall of rain on the tin roof. Effortlessly I drifted off to sleep.

And only woke up now. Fourteen hours later.

So, I’m still all sleepy and half awake, but feeling deeply revived and calm after some amazing nocturnal adventures, which I shall blog about tomorrow.

Have a beautiful day.

Hugs and Blessings, Nicole xx

 

A Little Bag of Comfort!

Image from ZingTravel

Image from ZingTravel

“There’s a sorrow and pain in everyone’s life, but every now and then there’s a ray of light that melts the loneliness in your heart and brings comfort like hot soup and a soft bed.” 
~ Hubert Selby Jr., Requiem for a Dream

Right now I’m pushing through an aggressive round of drugs and herbs to treat my Lyme disease and various co-infections. Oh goodness yesterday was tough. In fact my misery had started late in the afternoon of the previous day, from which time everything deteriorated.

At first I meditated. Then I tried to distract myself with a thoughtful gift from a friend who had packed me a little bag full of prompts, sounds and smells to take me on a journey through France, all from the comfort of my bed.

Eventually though, my physical pain and discomfort became too much for those kinds of imagination games. My very bones ached, my head throbbed as if it might explode, my skin burned, it felt like a million monsters were scratching and biting at me. Nothing I did seemed to reduce my suffering. How was I going to cope with weeks more of this same horror?

I needed some help.

Reaching over the side of my bed I groped around in my ‘Lucky Dips’ bag, and pulled out the first one my fingers found.

Here’s the little Love Letter I chose for myself. Perhaps it will have a message for you too…

My Lucky Dip Bag #1. All of the items inside were chosen randomly and placed in bags ready for when I might need them. Because of the way I put these packages together I have no idea what the contents will be.

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Lucky Dip #1 contents:

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An Oracle Card from Doreen Virtue’s Goddess Guidance Deck:

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A random note of encouragement from me:

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A Kimberley Amethyst I picked up many years ago in the company of my Aboriginal Aunties:

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I hugged that rock to me all day and used it as a focus point while I meditated.

‘It will all be worth it’, I reminded myself.

‘My prayers have been heard and are being answered.’

I slept with the crystal under my pillow. I slept! This morning I woke up feeling a little better. Less pain. More optimism. 5 weeks, 3 days to go…

Whatever challenges you’re facing right now, I’m encouraging you to keep going. It will be worth it! You’re in my thoughts, prayers and meditations.

Much love to you, Nicole xx

The Freedom of Four Wheels

Cartoon Car by Cassius

Cartoon Car by Cassius

“Not all those who wander are lost.” ~ J.R.R. Tolkien

Something fabulous happened late last week.

I drove a car. All on my own.

Yeah, you might be thinking. No biggie. But actually, for me, it was.

I haven’t really driven a car since November 2012 when my health took a turn for the worse. Problems with my heart. Problems with my eyes. Problems with my concentration and reflexes and spatial knowledge. It became untenable for me to drive.

I’ve had to rely on my husband or friends to take me places. Mostly though, I just haven’t gone anywhere. My world shrank small. Honestly, while I was so sick it didn’t seem to matter. Public transport wasn’t an option either. I had no strength to walk long distances or to wait around when I could have been home in bed.

A few weeks ago I began to notice a positive shift in my health after months of horrible uselessness. More energy, more alertness, better reflexes, eyes that mostly work. I received the okay from my doctors. I could try driving again.

For my first outing I drove the short distance to a local coffee haunt at six in the morning, my husband beside me. There was not a car on the road and I felt like a teenager under the watchful eye of their father. I was nervous but excited. Oh, the sensation of freedom! The joy of four wheels! What a rush!

freedom-quotes-sould-quotes-Freedom-is-the-oxygen-of-the-soul.

This past weekend I drove from my farm to Brisbane, a two-hour trip, with Bert the dog for company. I have my independence back. I was able to go back to work. I could head out to the store when I needed something. I drove across town to meet up with friends for breakfast. I took myself to my own doctors’ appointments. And last night I drove myself home to the farm. Hooray! I’m sustainable again. I can look after myself. I can drive.

On the last few miles of our trip last night, as we travelled down the winding narrow country roads that lead to our farm, I put the windows down. Bert and stuck our heads out the windows and sucked in lungfuls of clean cold farm-scented air, and I got why dogs find car rides so thrilling.

There is something quite empowering about being able to drive, about jumping in your car and going wherever you want, whenever you want. I’d never realised the importance of that freedom, that liberty. My car is nothing less than a magic carpet.

Makes me wonder where else I might dare to go…

Image from

Image from Justin Perricone

Photo by Ollie Craford. Lyrics by Defiance, Ohio.

Progress! All the little things that add up…

Image from zpply

Image from zpply

“Progress, however, 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

Are you one of those impatient types? You know what I’m talking about. You start the diet Monday and expect to have a visible transformation by the end of the week. You begin a wealth creation program and a month later you’re disappointed to learn you’re only a little better off than you were at the start. You make changes and then wonder if this new thing is worth sticking with when there isn’t an obvious result yet.

I know I’m stating the obvious here, but MOST CHANGE TAKES TIME.

Sometimes the increments of change are so minute that from hour to hour, day to day, week to week, it just doesn’t look like all that much is happening.

And sadly, because of that, too many of us give up. We stop following the diet, going to the gym, putting words on the page or whatever else it was that was supposedly plodding us towards our goals.

Because who ever wants to just plod?

But here’s the thing. If you keep plodding along, eventually when you look back over your shoulder you’ll realise you’ve travelled quite a distance from where you first started out.

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Here’s my latest milestones in my recovery from Lyme Disease. It’s given me so much encouragement to grasp that I AM making progress, even if I still feel tired, unwell and quite wretched very often.

  • Almost no chest pain. I have been acutely aware of my heart since my first heart attack in 2009, because I could feel it under my ribs and it hurt! I couldn’t hunch my shoulders, turn over in bed some nights or lie on my side because of how much pain it caused. In the last few months the pain has largely abated.
  • I can walk up hills. Slowly, but I can!
  • I can climb stairs.
  • I can handle hot weather better. My body is thermo-regulating and my heart is behaving. I don’t need oxygen.
  • I can put numbers into order, and file my bank statements. This has eluded me for years, since my last really bad lapse in 2002 which threatened to put me into a nursing home, so bad had my cognitive decline become.
  • I can do simple sums in my head.
  • I don’t feel like I am about to die.
  • I no longer feel like someone is digging a pitchfork into my head and twisting it viciously to get my attention.
  • I can bend over without passing out.
  • I can stand up quickly without passing out.
  • I can balance on one leg.
  • I can shut my eyes and not fall over.
  • I am physically stronger.
  • My vocabulary has increased.
  • I can prioritize and make lists.
  • My memory has improved.

Sure there’s heaps of stuff that could still work better in me. I acknowledge I have a long way to go. But when I think of where I was two years ago my improvement is actually quite astounding.

How about you? Are you making changes and sticking with them? Can you identify any tiny milestones? Sometimes when we’re looking at where we are now, we lose sight of how far we’ve already come.

I really want to encourage you not to give up. Even if from day to day it appears pointless. Even if it seems that what you’re doing is insignificant.

Most of my gorgeous clients who are ‘overnight successes’ slaved away unrecognised and unrewarded for years.

All that plodding and not giving up will get you where you want to go. And I promise the view will be magnificent. Hang in there! Much love, ♥ Nicole xx

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