Superbugs: My First Real Taste of Fear

Pretty as a child’s picture, but not fun at all! ESBL E. coli Image from www.scitechdaily.com

“I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.”
~ Frank Herbert, Dune

 

Wondered why I haven’t been blogging this past fortnight?

Last year, in the aftermath of major surgery, I became infected with a UTI (urinary tract infection). You can read more about that here. I had a catheter at the time while my bladder healed from a tear and it seems that this is how I picked up this little bug. A hospital-acquired infection.

No biggie, I thought back then. A simple round of antibiotics and it will be fixed.

Alas, no. This particular infection, ESBL E. coli is a superbug. In other words my little infection was antibiotic-resistant. It was okay, I was assured. There were still antibiotics that would work.

I was given oral antibiotics in hospital and then more when I got home. Apart from being slow to clear the infection, these particular antibiotics also caused me vision loss. Ocular toxicity and crystals forming in the back of my retina mean that even now my vision hasn’t returned to normal, although it is 80% better than what it was in October last year.

After the vision loss I decided to step away from my specialists ( a gynecologist and a urologist) and work with my fabulous local doctor who is also my acupuncturist. Using diet, chinese herbs, IV Vitamin C infusions and acupuncture we finally got my bladder infection sorted, my eyes improved and me feeling really good again.

Hooray. I beat the superbug! I went off on holidays and ran at life full tilt. It felt marvellous.

Until late March when I became infected with Shigella, a nasty gastrointestinal bug that laid me out flat and totalled my already-compromised immune system. (I have late-stage Lyme-disease. It complicates everything.)

My UTI flared up again, and my local doctor took a urine specimen. It was Easter Thursday, and we didn’t expect a result quickly. But we got one on Easter Saturday. It was the same superbug – ESBL E. coli. No worries my doctor said. It’s resistant to quite a few oral antibiotics but there are some it has sensitivity to. We’ll get you on them right away. And he did.

I took a first course and then a second, but I wasn’t noticing much difference. In fact I was beginning to feel worse.

We took a second specimen and discontinued the drugs.

This infection felt different to the one I had in hospital in 2016. Back then I was pissing blood and tissue and was in complete unrelenting misery, needing to pee every ten minutes and then only producing a bloody dribble. This time my urine was cloudy, and my entire lower pelvis ached but although I felt awfully uncomfortable I didn’t feel like I needed to pee constantly. Instead I felt like something was about to burst inside me. Car rides over bumps were agony, and I couldn’t even bend down to trim my toenails because of the pressure it put on my bladder. My back ached, and I couldn’t sit or lie comfortably.

On Friday 28 April, the night before my retreat, my doctor called me at home, quite late. I still had the superbug. It was no longer responsive to any oral antibiotic. He’d consulted an Infectious Diseases expert about what to do next.  I needed to report to hospital early the next morning for IV antibiotics. One big dose should do it and then I’d be able to head to retreat as planned. Important, seeing as I was running it! And just to be safe I’d have a second dose on Monday lunchtime while everyone was on a break.

Getting ready for my IV antibiotics and finding it hard to believe that things had escalated to me needing to go to hospital to be treated.

But I didn’t feel better from my massive IV antibiotic hit. I tried not to panic and focused on other things.

Monday morning my doctor rang me early. I was in my room, getting ready for breakfast before a big day of teaching. My lab work showed that my superbug was now resistant to this IV antibiotic too. I was going to have to be admitted to hospital and try a new antibiotic, very strong, and given in infusions eight hours apart for five days.

My wonderful PA Dana and I madly restructured the course to allow me to be a hospital inpatient from late every afternoon until mid-morning the next day, then duck back to run the retreat in my seven hour window of free time.

We coped okay, but the drugs made me feel even more awful.

Resigning myself to being in hospital in the middle of my retreat

On Tuesday morning just as I was about to head back to my retreat the Duty Doctor came racing into my room. I couldn’t leave. The superbug was now no longer responding to the latest drugs. There was only one real option left. I was to be given a new drug straight away. My own doctor kept talking to the Infectious Diseases specialist, and I was given incredible care by the staff at Byron Central Hospital.

We rolled onto the final option, with the same regime of an IV infusion every eight hours over seven days. Retreat finished midday on Thursday and my husband Ben raced my back to hospital to stay. No more gate passes for me!

I’ve been really ill before. I’ve had some very big scares. But nothing compares to this one.

As Ben drove me back to hospital after my retreat concluded I realised that even after a full week of IV drugs I still wasn’t feeling improvement. I was struck with a sudden thought. There weren’t many things left to throw at this infection. It was a sobering moment. My darling husband. My precious pups. What if there was no more time? If things went downhill there was no time left to finish my memoir or my pirate tales. No time to go to the places I had wanted to travel to. No time to finally be well and just hang out with Ben. Or to go do yum-cha with my sister. Or go listen to my brother’s band in some Tasmanian pub on a Friday night.

Byron Central Hospital – best staff ever!

It took until Sunday night before my symptoms went from escalating to turning the corner. By that stage I was also taking a drop of Frankincense essential oil on my tongue every ten minutes. When my symptoms began to remit I took it back to half-hourly, and then to hourly. I’m not ashamed to say that I also called on God, my Ancestors, my Guides and on the healing energy that my students and friends were sending me.

Somehow, things finally went in my favour.

I’m home now. And I’m feeling wrecked from the enormous stress and quantity of drugs I’ve had to subject my poor body to. On doctor’s orders I’m on two months of rest to build my immune system back up. My next retreat has been postponed until September. We’ll give you more details on that soon.

 

Right now every bladder twinge, every burning sensation or cramp makes me wonder if we killed it. Or if this damned bug still lurks inside me, waiting for me to drop my guard. Something still doesn’t feel right. I’m trying not to worry about it. But of course, I am.

During the day I’m fine. But at night my dreams are all nightmares where the infection was never completely cleared and when it flares up again there are no more drugs and I die.

Suddenly, all that talk about antibiotic-resistant bacteria being the major threat of the future just got personal and very, very real.

 

So, apart from looking after yourselves, what can you do to make sure you don’t end up where I have? Eat well. Rest enough. Get some sunshine and some exercise. Only take antibiotics when prescribed by a doctor, and take them exactly as directed. Wash your hands well after going to the bathroom and before preparing or eating food. It’s simple basic hygiene but it helps enormously to stop the spread of infection. Probiotics and fermented food help too, by keeping your gut health strong. Ladies, when using the bathroom wipe from front to back to stop bacteria from your bowel potentially ending up in your urethra and bladder. If you’re immuno-compromised don’t take risks. Be extra vigilant with your hygiene and don’t be afraid to wear a mask and to use gloves or hand sanitiser.

And whatever you do, don’t get Lyme disease. Especially in Australia.  But that’s a whole other story…

The beautiful waterlillies some of my students brought me during my hospital stay.

Changing Your Perspective Changes Everything

Staircase Perspective by George Oze

“Most misunderstandings in the world could be avoided if people would simply take the time to ask, “What else could this mean?”
~ Shannon L. Alder

 

I met with a new doctor yesterday. It was a trial of sorts. I wanted to see if they would become my Lyme Recovery Plan A, or whether I would need to keep moving through my list.

I’ve seen this doctor before. In fact, they gave me my initial diagnosis. Then they told me that Lyme was very controversial, and that they would not be treating me for Lyme. They would treat all my other issues first.

This doctor is expensive, and arrogant, and I wanted a faster result. To give me a diagnosis and then tell me  you wouldn’t treat me for it? I chose another course, and a doctor who would treat me for Lyme straight up.

Now, four years later, I am back at this doctor’s door. And I have to tell you, the meeting didn’t go well.

They asked me what I’d been doing. They reviewed my results. They accused me of doctor shopping, because I had left this doctor’s care and gone elsewhere. They paced the room, questioning the decisions of my other doctors, including making statements about the doctors making rookie mistakes and bad calls that a first year medical student might make. These were mostly doctors who have progressed my health, and truly supported and helped me on my journey back to wellness.

It was hard to take.

When I told the doctor what I had been doing with my diet and other methods I was using for myself they said to me sarcastically, ‘Are you a doctor?’ before dismissing me mid-sentence and moving on.

I came out with a bruised ego, a battered sense of self, a handful of scripts and a list of new tests a mile long.

I didn’t like that doctor very much.

There wasn’t exactly any rapport or bedside manner.

As I waited for my husband to come pick me up I began to think that I needed to keep looking. That maybe this wasn’t my answer after all.

Even though so many circumstances had aligned to get me through their door.

I poured my heart out to Ben as he drove me towards the place where I might get my first tests done. If I followed through.

‘I don’t know,’ I said to Ben. ‘I’m beginning to think I should choose another doctor.’

‘Why?’ said my ever-logical husband. ‘This doctor diagnosed you when no-one else knew what was going on. You’re still on some of the treatments they initially gave you, that none of your other doctors were willing to change because your other doctors have been intimidated by this person, and because it seems that this doctor was right in all the calls they made. So this doctor has a big ego, and you don’t think you’re going to be friends? Does that remind you of anyone?’

‘No,’ I said grumpily. In my head I had already dismissed this doctor, and I was now working on my Plan B.

‘What about House?’ Ben said. (For those of you who don’t know, House was a TV show, and the lead character was Dr Gregory House, a genius investigative doctor whose behaviours made him less than endearing to the patients whose lives he saved.)

Ben put his hand on my leg reassuringly as we drove along. ‘Isn’t House a doctor who is arrogant and a pain-in-the-arse and rude and also brilliant? Wouldn’t you prefer to be treated by House and put up with all his shit if it got you better? Who cares if you don’t much like this doctor or if they hurt your feelings? They seem to know what they are doing.’

Wow.

In that brief moment my perspective shifted.

Ben was right.

I decided to stick with it and make this House-like doctor my Plan A.

Hooray for that.

Suddenly the ego and the attitude have become secondary, background issues, instead of my prime concern.

It’s all a matter of perspective.

After all, I didn’t like him to start off with, but in the end, House became one of my favourite characters of all time…

Image from www.tumblr.com

Image from www.tumblr.com

Doctor, Doctor…

“As my sufferings mounted I soon realized that there were two ways in which I could respond to my situation — either to react with bitterness or seek to transform the suffering into a creative force. I decided to follow the latter course.”
~ Martin Luther King Jr.

 

When do you accept your current circumstances, and when do you keep fighting for change?

As someone who has lived with chronic illness and limitation for much of their life, this is a question I often ask myself.

I’m off to a new doctor today. Well, not so new. I’ve seen them twice before. I hesitate to write anything else at all about them, such is the culture of bullying and persecution that exists for doctors brave enough to diagnose and treat lyme disease here in Australia.

Anyway…

I saw my first lyme doctor back in 2013. They treated me with a hardcore regime of antibiotics and antibacterials, supplements and diet – saving my life and reversing many of my symptoms. But their practice was closed down fourteen months later, leaving me part-way through my treatment protocol and scrambling to find competent care.

I finally found another doctor to take me on.

Only to have that practice close down too.

I managed to cobble together a treatment plan and find other doctors who would treat me ‘under the radar’ but who couldn’t prescribe the drugs I needed to complete my treatment.

I improved a little more, and stabilised.

But slowly the old symptoms began to return, no matter what I did. Peripheral neuropathy, pain, rashes, facial numbness, exhaustion, mental confusion, neurological incontinence and lyme bladder, terrible headaches, eye pain, loss of vision, impaired balance, slow reflexes, sleep disturbance, fevers, sweats, heart problems.

Then I ended up with the flu at Easter, after which my old Lyme symptoms raged with a vengeance. My thyroid function has been almost destroyed, and my antibodies are off the chart. I have ongoing heart problems and vision disturbance which has not improved.

To have been on the road to well, and then to slide back again is terrifying.

To have gained function and then lost it again has been mental torture.

In early March, while I was in the Philipines I made the decision that I would leave Australia if necessary, to access the drugs and treatment that have been proven to lead me to recovery.

When I came home from Cebu someone in my circle directed me to this doctor, and told me they had discussed me with them, and that they would help me.

So, off I go today. I no longer even sit in a hopeful space. I am resolved and resigned. This is my new Plan A. But I have a Plan B and a Plan C too.

I know I can have a better quality of life. I’ve experienced that. And having tasted it I want more.

I’m not done fighting.

So, I’ll keep you posted. Fingers crossed this one is the last doctor I need for a long while.

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.

 

 

A Little Lyme Recovery Update

2015-11-02 08.17.38

“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.

2013-03-10 07.51.51

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.

20140510-175237

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

Late blog because… COWS!

cows

“How did it get so late so soon? It’s night before it’s afternoon. December is here before it’s June. My goodness how the time has flewn. How did it get so late so soon?”
~ Dr. Seuss

 

While enjoying a late afternoon session at the Byron Bay Writers Festival yesterday my phone went nuts in my bag. It was turned to silent, but eventually I could no longer ignore the persistent vibrations of call after call.

It was the neighbours.

Our cows were out.

All of them. And not only out, but wandered far, far from home.

I located Ben and we roared off to look for the wayward beasts. That was at 4pm.

It took the help of several good neighbours, bales of tasty enticement lucerne, and three hours of slogging through paddocks,  across roads, up and down gullies, and in and out of the yards of strangers before we finally returned them to our home paddock. We put them in the yards to keep them safe. All of that done in the dark, and by the hazard lights of support vehicles and the moon. Stressful much? Yes.

Ten minutes later I collapsed in a chair, thoroughly exhausted. You know, that place where you are vomiting from fatigue. Yep. Wrecked. Lyme disease and I aren’t used to so much frenetic excitement. Nor getting my year’s exercise quota in one night!

This morning, before dawn, we were up again. Dressed warmly against the frost we drove and walked our fenceline, finding the place where a tree had fallen and the fence needs repair. Checking that the river paddock was secure enough for us to turn our herd out there and know that they would be safe.

Farm life. Never a dull moment!

I don’t mind, really. My cows are home safe, and the walk this morning was oh so beautiful.

See you tomorrow for Week Two of our Journal Challenge.

I’m off to the Writers Festival again to find some writing mojo.

Much love, Nicole xx

PS –  Some shots of our farm this morning:

dawn

gums

 

dawn 2

 

calves

Two Steps Back

Image from tumblr

Image from tumblr

Don’t ever give up.
Don’t ever give in.
Don’t ever stop trying.
Don’t ever sell out.
And if you find yourself succumbing to one of the above for a brief moment,
pick yourself up, brush yourself off, whisper a prayer, and start where you left off.
But never, ever, ever give up.
~ Richelle E. Goodrich

 

It had to happen.

I’m on new treatment. We’re working on my detox pathways, and some brain rewiring and rehab before I hit the lyme drugs again for another round. Both my doc and I are new at some of this – both the treatment modes, and the regimes. They’ve been tried and tested by other doctors, with other patients, and their positive results have spurred us to try the same. (In my 30 plus years as a Lymie I’ve been a guinea pig for lots of stuff – desperation and a sense of the curious will do that to you.)

On the plus side for this new regime? We know it works. I’m getting noticeable results.

On the not-so-plus side?

Too strong. Too fast. Because of that I’ve gone backwards a little. A temporary thing. My poor old brain has been overstimulated, and my detox pathways are not coping with the load. So there have been some unpleasant side effects.  Headaches. Ramped up pain. Small seizures. Temporary loss of vision in my troublesome left eye (neurological rather than an actual eye issue). Disrupted sleep patterns. Mega brain fog and exhaustion. Slurry speech.

Thinking is hard. Problem solving stresses me out. Or else I look inside my brain for an answer and there is nothing…

Image from cheezburger.com

Image from cheezburger.com

I got properly checked out, and I’m fine. I just need to rest. Rest some more. Cut back my program. Drink lots of water. Did I mention rest and avoiding stimulation?

Soon as I’m feeling better we’ll try again, more gently this time.

So I’m going to step away from blogging for a few days so I can have a proper no-pressure break.

At least I got to enjoy a semi-normal weekend just a few days ago. Moments like those are gold. They show me that everything I’m doing is worth it, even the less-than-fun spaces like the one I’m in right now. I’m miles ahead of where I was this time last year. It feels like a different life, that me of a few years ago where I was dying and every day was a miserable struggle.

A setback is just that. A setback. It’s only a failure if I stop trying. Anyway, if I’d quit when the going got tough I’d have died years ago. 🙂

This round of treatment has been a valuable learning experience about what not to do. Next round, I’ll do better!