What Happens When Someone Believes In You

“You may be the only person left who believes in you, but it’s enough. It takes just one star to pierce a universe of darkness. Never give up.”
~ Richelle E. Goodrich

 

Memoir is a funny thing for taking you walking into places you would rather not remember. I was thinking, last night, of a time when I had all but given up on myself.

1987.

I was so young then. Barely just begun at University. In a body that was falling apart. In a life that was falling apart. An over-achiever who was failing at everything. And in that terrible place of not being believed when I said that something was wrong.

For something was wrong. Very wrong.

For months I woke bathed in sweat and wrestled fevers through the day. My joints ached and swelled. My heart thumped in my chest and missed a beat or two whenever it felt like it.

The music I’d been been able to read since I was a small child became a spaghetti tangle on the page. I lost my ability to remember information or to place things into a logical sequence of events. Numbers became meaningless.

I forgot where I lived, and the names of people whom I’d known for years.

I fell down in the street, my legs giving way beneath me for no reason.

My legs jigged and danced in bed at night, no matter how I tried to keep them still.

And there was pain. So much pain. Ice-picks being buried in my head. Nerve pain roaring behind my left eye and rendering me sightless from that orb for days on end. Cramping pain. Dull pain. Electrical pain. Sharp pain. It moved all round my body, making a liar of me. No-one has pain like that. Except that I did.

Then there were the rashes that came and went. Exhaustion so overwhelming that it was all I could do some days to lift my head from the pillow. Infection after infection.

So much of my life became blurred. Slowly I was losing myself. That much I knew.

Our family doctor told me that I had women’s troubles, and prescribed valium.

A second doctor suggested anti-depressants, and theorised that I didn’t have the heart for serious study. Why not become a shop assistant or a secretary instead? Or surely I had a nice boyfriend I could marry? Motherhood was very satisfying, I was told, even though modern girls thought they knew better.

When I continued to question my diagnoses, and to ask for my doctors to be more investigative I was referred to a psychiatrist.

Who sent me to a neurologist, just to be thorough. Where I promptly spiked a fever and collapsed. So the neurologist sent me to his friend, Doctor Richard Kemp, the Head of Infectious Diseases at the same hospital.

Doctor Richard Kemp was a man who listened. He was a man who cared. He took the time to conduct all manner of investigation over several weeks. Finally he concluded that I was suffering from an infection. His tests could not isolate it, but he was sure. It was like AIDS without the HIV he told me.

Doctor Kemp also told me, regretfully, that he was unable to treat me because he had no definitive diagnosis.

After which he said something remarkable. I believe you, he said. You know your body better than anybody else, and you know that something is wrong. I know that too. Do not let anyone tell you otherwise. Hold to your guns. Don’t give up. One day you will be proven right.

In my darkest days I have held on to that the way a drowning man would cling to a lifeline. To have someone believe in you and encourage you is a powerful thing.

Life-changing, actually. Because after that I began to fight, and since then I have never turned my back on me.

Fast forward to 2013 where I received a definitive diagnosis that proved Dr Kemp correct. I have lyme disease. It is an insidious infection that has rampaged through thirty years of my existence, and that – prior to my diagnosis – had almost killed me as I sat in cardiomyopathy and congestive heart failure, with a brain full of lesions and almost every major system in my body broken.

 

A big part of the reason I have endured is the encouragement I received from that kind doctor. I am still here. Still here, and now finally, because of treatment I am getting better day by day.

 

Who can you reach out to and support? Who can you encourage?

A few words, honestly stated, may mean more than you can ever know to someone who could use a self-belief boost. Destinies can be changed. Futures can be created. Lives can be saved.

 

And for those of you who are struggling? Please, don’t give up on yourself. You just never know when that breakthrough or answer or guiding light will come.

Holding you in my meditations and prayers, Nicole❤ xx

 

An Amazingly Ordinary Fabulous Day!

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“Do not ask your children
to strive for extraordinary lives.
Such striving may seem admirable,
but it is the way of foolishness.
Help them instead to find the wonder
and the marvel of an ordinary life.
Show them the joy of tasting
tomatoes, apples and pears.
Show them how to cry
when pets and people die.
Show them the infinite pleasure
in the touch of a hand.
And make the ordinary come alive for them.
The extraordinary will take care of itself.”
~ William Martin, The Parent’s Tao Te Ching: Ancient Advice for Modern Parents

 

Ordinary.

It sounds so boring, doesn’t it?

Except that it’s not.

As someone who has suffered chronic illness for decades, ordinary has long been a pipe-dream for me. To be ordinary, to have the energy of an ordinary person and to do ordinary things over the course of an ordinary day? Wow! WOW! That would be amazing!!!

Yesterday I had one of those days. An ordinary one. I woke early and meditated, helped my husband stack windfallen timber on burn piles, and then dragged the hose around my vegetable gardens and new fruit trees before we headed out to the markets and breakfast at a favourite cafe.

After breakfast we came home and I did a load of washing, and then worked on a new draft of my Year of ME Planner (stay tuned – it’s not too late if you haven’t started. I’m launching a mid-year intake on my course, and there is a June to December version of the Planner to help you make the most of the remaining half of this year! We’ll be launching Monday 23rd of May – or Sunday 22nd if you live on the other side of the world.).

2016-05-20 11.27.40Then I sat in the sunshine and coached two of my Deluxe Year of ME students via skype, and did an emergency reading for a client.

Washing off the line, the hose dragged up into the orchard to deep-soak a few fruiting trees, and a big pot of chilli made and on the stove for dinner.

Course uploads and a recording for one of my groups. A few facebook messages and comments on posts.

After dinner there was time to work on my memoir. A whole chapter rewritten before shower, meditation and bed.

It was a full day.

My brain worked.

My body worked.

I had energy.

I was happy and engaged and so, so positive and clear about my direction and my various projects.

At day’s end I wrapped myself in my blankets and promptly fell asleep. After a moment of worrying as to whether I had overdone it…

And this morning I woke after a great sleep, stretched, meditated and began the day feeling as good as I did yesterday.

Wow.

I think this is what well must feel like. Whatever it is, sign me up for more!

Ordinary is extraordinary. It’s deliciousness on a stick.

Hugs and love from a very grateful and slightly emotional Nicole xx

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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.

The Power of Positive Self Talk

“You may be the only person left who believes in you, but it’s enough. It takes just one star to pierce a universe of darkness. Never give up.”
~ Richelle E. Goodrich

 

Sometimes I have to pull out everything in my bag of tricks in order to rise above my current circumstances. Like right now, flat on my back in bed right when I’d been planning a million other things…

One thing I have found invaluable in that bag of tricks is simply talking out loud to myself.

I know. That’s what crazy people do. Right?

That may well be, but research shows that talking to yourself can have a profound positive impact on your motivation and coping skills.

You might have read my blog post earlier this year about being in resistance to choosing my One Big Thing for 2016, where I asked myself Nicole, what’s really going on? You’ll notice that I talk to myself and call myself by name.

I have talked to myself out loud for many years through my illness and despair. Almost always, the words I have used are as a coach, encouraging myself…

Nicole, you can do this. Nicole, you are stronger than this. Come on, Nic, get up and keep going. Nic, you’ll find a way. Nic, you’ll heal this. You’ll get past this.

Talking to yourself is also known as self-talk. All of us run a continuous dialogue with ourselves, but it’s usually in our heads. And often, we aren’t very supportive or kind to ourselves. But when we do start to harness the power of speaking with kindness and encouragement to ourselves, things can really change.

Image by serg_dibrova

Image by serg_dibrova

Studies show that speaking out loud and shifting from using the pronoun ‘I’ to addressing as ‘you’ has a powerful impact on our self-regulatory behaviours, beliefs and actions. To amplify the effect further, call yourself by your name.

Talking out loud to ourselves is the same as having someone else talk to us. It engages a different part of our brain. We listen and consume the message in a completely different way to the way we pay attention to a thought. Talking out loud cuts through our mental chatter and gets the message noticed. And addressing ourselves in the third person (*you) rather than the first ( *I ) moves us away from fear, which clouds our judgement and prevents us from thinking clearly.

Research has proven that talking out loud to yourself can:

  1. Reduce pain scores
  2. Increase coping skills
  3. Improve state of mind
  4. Increase emotional and physical resilience
  5. Improve focus and attention
  6. Heighten the learning state
  7. Strengthen determination
  8. Speed healing
  9. Create and maintain a positive outlook
  10. Build self-acceptance and self-esteem
  11. Better manage stress
  12. Improve physical and emotional health

The way we talk to ourselves matters. It is a simple way that we can help and support ourselves.

We can tell ourselves a different story – one that overwrites the narrative of not-good-enough or never-changing that we (or others) may have been telling ourselves for years.

Speak your name out loud, and give yourself the words that can help you change your life. Talk yourself through the difficulties, the decisions, the hard times. Be your own wise coach and cheer squad. I promise it will make a positive difference in your day.

All my love, Nicole❤ xx

 

Nurse Bert Reports

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“To make a difference in someone’s life, you don’t have to be brilliant, rich, beautiful or perfect. You just have to care.”   ~ Mandy Hale

 

 

I’m not letting her out of my sight.

Nicole, that is.

Because she’s still really sick.

I’m making her rest. I’m following her if she needs to get out of bed. I want her to know that my job is to look after her. And I take my job very seriously.

Human peoples, Nicole is resting. Rest can make you better. So can love. So I am making sure she has both.

Maybe you need some rest and some love too. I think it is very good medicine.

That’s all for now.

Love from Nurse Bert

xoxo

 

Packing My Suitcase…

“Wandering is the activity of the child, the passion of the genius; it is the discovery of the self, the discovery of the outside world, and the learning of how the self is both “at one with” and “separate from” the outside world. These discoveries are as fundamental to the soul as “learning to survive” is fundamental to the body. These discoveries are essential to realizing what it means to be human. To wander is to be alive.”
~ Roman Payne

 

Today I’ll be packing my suitcase. You see, I’m finally well enough to travel. (Fingers crossed, touch wood., etc..)

I’m flying out of Australia tomorrow to attend a conference in the Philippines. It’s my first trip since I was diagnosed with Lyme. It’s also my first solo overseas adventure as an adult. Usually my darling husband Ben is with me, holding my hand, guiding me places, organising everything.

Ben does so much for me, and has done since shortly after we were married. It’s not that I’m a hopeless, helpless creature by nature. Once upon a time I was fiercely independent. But my health has slowly been deteriorating since I was at high school, and for many years my cognitive function and my balance and coordination were so poor that if I didn’t rely on Ben I would never have been able to go anywhere.

I am the Queen of my Domain inside the house, and as long as circumstances are tightly controlled I totally rock within a narrow band of activities. I give the appearance of being high-functioning because I have crafted my life around my limitations.

That hit me last night. Effectively, Ben has been my human guide-dog for all of our twenty years of togetherness.

As my heath deteriorated, so did my confidence. Ben has been able to facilitate the illusion of my independence so capably and unobtrusively that even I had bought into the myth.

I keep reminding myself that I’m much more well now. My brain works. Unless I’m tired or very stressed. My body mostly does too. Still, it’s more scary than I’d realised, contemplating this solo adventure.

And that worrying chest pain, which two years of intensive antibiotics had completely banished, has just recently made a reappearance. That’s okay. I can live with that. I did for years before, didn’t I? See, it sits there quietly now and I’m still functioning and okay. It won’t be a problem. Anyway, I have health insurance and the Philippines has doctors and hospitals.

Our wonderful travel agent has organised for me to fly as far as Singapore, get off and sleep in an airport motel for the night, and then travel on to Cebu the next day. A leisurely trip. Not much to worry about or to exhaust me. I can even access one of those little buggies that takes the old and the afflicted between terminals or across long airport distances. I’m hopeful I can stride out on my own, but I’m not above asking for help if the long flight leaves me so stiff that I can only manage a limpy lurch by the time I disembark. Still, I’ve checked all the details a million times, and worried about it all.

My packing is a little hilarious. I have my laptop, notebooks, pencil case, Year of ME Planner, oracle cards and a few little crystals.And my iPad. And my phone. Yes, I need all of them. And the chargers. And the power adaptor.

I have a quarter of my suitcase devoted to herbs and supplements, medications and first-aid requisites I actually can’t do without.

And then there are the additional issues I might need to consider. Will my neurological incontinence play up? (Thank you, Lyme!) Hmmm. If so, I need to bring incontinence pads and some big-girl pull-ups. (Which induced a worrying amount of God, what if my bladder gives way on the plane? thoughts. The only way to avert disaster is to plan for it and wear something just in case the worst happens. Sigh.) Can you buy adult incontinence products in Cebu? Better pack some, just in case, although I hope I won’t need them.

Will the pain in my legs keep me up at night? Should I pack magnesium gel and some liniment? Yep, I’d better. I haven’t managed more than a night or two without these things in the past three years. Which means I’ll need to pack my essential oils too. Can’t sleep or function some days without them.

Oh. My bag is nearly full, and I haven’t added clothes yet.

Luckily the Philippines is balmy. I won’t need many clothes. Most of what I need can actually be packed in my carry-on luggage. (How ridiculous, right?)

This time tomorrow I shall be taking one last cafe trip with Harry and Ben, before we have cuddles all round and then I am dropped at the airport.

Scary good!

I keep thinking of Helen Keller’s quote – Life is either a daring adventure or nothing.

I’m sure I’ll be just fine.