Gumboot Adventure and a Lyme Update


“One final paragraph of advice: do not burn yourselves out. Be as I am – a reluctant enthusiast….a part-time crusader, a half-hearted fanatic. Save the other half of yourselves and your lives for pleasure and adventure. It is not enough to fight for the land; it is even more important to enjoy it. While you can. While it’s still here. So get out there and hunt and fish and mess around with your friends, ramble out yonder and explore the forests, climb the mountains, bag the peaks, run the rivers, breathe deep of that yet sweet and lucid air, sit quietly for a while and contemplate the precious stillness, the lovely, mysterious, and awesome space. Enjoy yourselves, keep your brain in your head and your head firmly attached to the body, the body active and alive, and I promise you this much; I promise you this one sweet victory over our enemies, over those desk-bound men and women with their hearts in a safe deposit box, and their eyes hypnotized by desk calculators. I promise you this; You will outlive the bastards.” 
~ Edward Abbey

*Note: I recommend reading all the way to the end of this post. Past the pictures even. Oh yes, I do.

People are always asking how I am and I almost always say ‘fine, thanks’.

Truth is, I have advanced late-stage Lyme disease, and as with any chronic degenerative illness I have a catalogue of woes so to actually tell you how I am might take hours. Boring. I’m over it long ago. So ‘fine’ or ‘okay’ mostly does the job. I manage. Many days are great, and I am working, living and making the most of what I can. Happy, happy. I don’t dwell on my health or lack thereof.

Mostly.

I’ll level with you, though. The last few days have been rough.

I’m miserable right now.

I picked up a cough while visiting Ben’s mum in the nursing home. After four weeks it has steadily become worse and I can’t shake it. Because of that, my UTI flared up. I’ve been peeing five times a night and my bladder is agonisingly sore. I have been feeling myself slowing getting more run down no matter how good my self-care and health care has been.

So I started on new Chinese herbs two days ago for my latest infections. Great news – they’re working! Less great news? They are also killing Lyme Bugs so I am herxing like crazy as the Lyme dies and releases toxins into my already overloaded body. My eyes are red and streaming and only one is working, only one side of my face is mobile and responsive, my skin is on fire, I’m photophobic, I have stabby pains and night sweats and swollen glands and bone aches and head aches and nerve spasms and tender teeth and numb fingers and toes and neurological incontinence (I wee my pants for no reason!) and generally more misery than I remembered was possible. Yay? But fighting bugs, so yay!!!!! Now we’re working on getting the dosage correct so that I can manage the chest and UTI infections without going mad from herxing. Please don’t worry. I’m in good hands. (And yes, I have cried, screamed and whimpered often this past few days because I’d forgotten how truly awful herxing can be.)

I’m smiling here, honest! It’s just that only one side of my mouth lifts up right now…

In the midst of all of this misery I needed to go open a gate at the farm for Ben. I got out of bed, left my pyjama top on, threw on some shorts and my gumboots and slogged down to the Tractor Shed paddock.

Oh. It was so beautiful there in the misty cold afternoon. The ground was soft and green and lush. The trees shone with a vibrant light, and the birds sang. It felt good to be out of bed and outdoors.

When my short adventure was over I hastened back to a hot shower, fresh pyjamas and more rest.

It was worth it to have that little gumboot adventure.

I’m wishing you little adventures too. No matter how shitty life gets, a little tiny adventure, a small moment fully lived, a simple pleasure fully and mindfully experienced – that’s what makes it all more manageable. I rate my coping skills as high. And that’s one of the reasons why!

Biggest love and hugs from this tired and battered Lyme Warrior. I’ll be back at my best soon, I’m sure. Meanwhile, I’m happy to be herxy. (Well, mostly! xx)

PSS – Thanks if you scrolled down this far. Just a reminder that I am massively sleep deprived and in pain right now. So if you:

  1. suggest that positive thinking might be beneficial or a cure-all,
  2. offer to hook me up with your miracle-inducing network marketing product, or
  3. remind me that I somehow manifested all of this as a learning experience,
  4. or that this is karmic

then I can’t be held responsible for my actions. Need more help with this because you’re itching to do one of the above? Read this first.

Wishing for Good Veins

“I have druggie veins. After so much intubation they are scarred and flat and tired and difficult to handle. It’s an odd thing to confess but the truth is all I notice is people’s hands and their veins these days. I have as much vein envy as any junkie. Oh, I think. Look how fat and juicy that vein is. I could get a cannula into that myself!” ~ Nicole Cody

 

It’s IV day for me. A regular practice, and one that keeps me upright and functioning. These IVs have kept my immune system boosted, they’ve helped me overcome life-threatening infections on more than one occasion, and they allow me to stay functional despite having chronic late-stage Lyme disease. Right now I’m battling an ongoing sinus infection left over from my horror flu earlier this year. It’s slowly wearing me down and I need to get on top of it. Hence the IV.

As much as I put on my happy face, I don’t enjoy them. With each year it has become that little bit more difficult to get an easy insertion or a bruise-free/trauma-free spot after the previous session. My doctor is a dream – so clever and patient, and he and his team work marvels. I know today will be a good day. But still, I’m always anxious until the needle is in the vein, and the fluids are flowing, and everything is proceeding well.

Afterwards, I’ll call my friend Carly, who also has recalcitrant veins (both of us have experienced the joys of having multiple attempts that resulted in nothing but bruises or the inglorious humiliation of having to have your IV line go through a vein in your foot – like all the best druggies who have destroyed all their other useable spots). Carls understands, and we unpack our latest experiences and share notes and support. Two friends with chronic illness finding solace in having someone else who has walked a similar path.

Wish me luck! See it all happening easily and well for me. Thanks a million,

Nicole ❤ xx

My Latest Obscenities…

“Whenever you speak the truth, someone will be offended.” 
Laurence Overmire

Yesterday I posted about having the flu (no fun!) and with that post I included pictures of myself showing me as I am right now – sick with the flu!

Thanks to everyone who sent me messages of love, care and support. I’m so grateful for the wave of positive energy and blessings you sent my way. Right now I’m being very well cared for, including by Nurse Rufous who has taken the reigns from Nurse Bert.

Inevitably though I had a few comments yesterday suggesting that these pictures were a bad idea. I also had a message from an entrepreneurial friend who suggested that the pics might ‘harm my brand’. Apparently the photos are less than flattering, and in the one where I am asleep I not only look sick but ‘old and wrinkled with bad hair.’

Yep, it’s true.

People, I recently turned fifty. I have chronic late-stage lyme. I also have the flu. I’ve been REALLY ill. I look trashed because I am. And I’m not going to apologise for that. Old and wrinkly with bad hair? I own it. Luckily it’s only a picture because I probably smelled bad too! Looking stylish and well-groomed when I’m acutely sick doesn’t even rate on my priority list. (Please note that this is different to being chronically sick, where you feel exhausted, in pain or suffer ongoing problems on a daily basis and in that space making an effort with your appearance can actually help you feel better about yourself. Also, many of us suffer invisible illnesses – meaning that you CAN’T SEE the problem – so you might wrongly attribute someone looking good with being well, which is often an incorrect assumption.)

I also received a message from a young entrepreneur who is just starting out in business. She reached out to me (think SPAM) from a forum for entrepreneurs where I happen to be a member.

Her message? To be prepared for a ‘stunningly sexy summer’ she has a great invitation-only program to maximise our thigh gap. To be selected we had to send a photo of our existing thigh gap (image could be up to two years old as long as it was indicative of our current thigh gap situation) so she could determine what level of program we’d need to be on. There was nothing to be ashamed of, her message assured me. I needed to be brave and send in that photo! Then all we had to do was pay our money, follow her thigh gap program and self-worth would be ours. Also, men dig thigh gaps.

I was feeling a little pernickety yesterday at being told how much my life would change if only I could be disciplined enough to have a decent thigh gap (yes, thigh gap is a thing!). I honestly have more important things to think about, like my health, living by my values, looking after the planet, being kind, writing, supporting my community, living each day as well as I can. Still, I dutifully sent in the only photo I could find of my thigh gap. (Did I mention pernickety?)

Within twenty minutes my inbox exploded. Message after message rolled in. This young entrepreneur was outraged. I was horribly offensive. Sick even. What did I think I was doing, sending her such a disgraceful photo? I disgusted her.

‘Also, is that a WEE thing????? That is SO inappropriate. SOOOOO OFFENSIVE. WTF Nicole?????’, she shouted at me in big stabby caps. ‘WTF???? YOU’RE DESPICABLE AND OBSCENE!!!’

Wee thing? You bet! Here’s my thigh gap after my second emergency surgery to repair a tear in my bladder post-hysterectomy back in September 2016. That tube is my catheter. The yellow stuff is indeed wee (or urine if we are being specific).

The wee’s a good colour. You might also note that there is a healthy amount of thigh gap going on there. So I’m pretty happy with this photo.

Even though it’s offensive.

So, to anyone I have offended with my oldness, my bad hair, my wrinkles and unflattering selfies, my posts about health issues or with my highly offensive thigh gap with catheter…

I’m not sorry!

This is my life, and I’m grateful for it. I won’t hide the ugly and hard bits from you ever. Why should I be ashamed of being human? Why should I feel or be treated as ‘less than’ if I am not young and svelte and in perfect health with an extreme sports yoga-body, perfect hair and total hipsterness?

There’s an unsubscribe button here on my blog, and you can always unfollow or unfriend me if you’re finding this through social media. Because from here on in I am sure there will be more bad hair days and wrinkles and who knows what else, and I’ll blog about it all.

Much love, Nicole xx

 

Three In a Row!

“The best cure for insomnia is to get a lot of sleep.” 
W.C. Fields

This morning I’m celebrating a minor miracle at my house.

For the past three nights I have gone to bed, fallen asleep and then woken in the morning.

It’s been years (at least fifteen!) since I’ve had an uninterrupted night’s sleep, and I can’t think of the last time I had three in a row.

Usually I’ve found it hard to fall asleep because of pain. Or pain has woken me up. Or a bladder infection. Or both.

At my worst I was waking up hourly because of my bladder. And a good night meant that I’d get up maybe three times to pee.

The longest time I’d go between waking for any reason was maybe three hours.

And then this miracle happened.

Three nights where I have gone to bed, fallen asleep, slept all night, woke up in the morning.

I am finding it hard to explain how incredible this feels. How marvellous. How miraculous.

I went to bed and slept. Then I woke up and it was morning.

Actually, I’m crying now, writing this.

It’s amazing. Wow.

Dear Lymies and friends with seemingly intractable health problems, don’t ever give up. If it changes for me it can change for you too.

Biggest hugs, Nicole  xx

Sneaking Out of Retreat

“The Principle of Priority states (a) you must know the difference between what is urgent and what is important, and (b) you must do what’s important first.” 
~  Steven Pressfield

 

We’re on Retreat right now, and I am that Retreat’s leader.

But this morning I am sneaking off.

Every Thursday morning is my acupuncture and IV day, and even though I’m on Retreat it’s one appointment I am not going to cancel or defer. My health comes first. So while everyone sleeps in, or goes to the Byron Farmers Markets or into town for a look around, I’ll be canulated, stuck with needles, all loved up with awesome medical attention and then be back at Retreat by morning tea – ready to start a very big day of wonderful meditation, craft and sharing, followed by a channelling evening with my Guides.

How about you? Do you make time in your life for what matters most? Do you give enough time to yourself and your well-being? I truly hope your answer is a yes, and if it’s not then I’m sending you a big hug and a gentle whisper of encouragement so that you find a way to make yourself a priority in your own life!

Lots of love, Nicole  xx

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

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.

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.

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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 <3 xoxo

Home In My Own Bed!

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“I live in my own little world. But it’s ok, they know me here.”
~ Lauren Myracle

 

There is something so sweet and good about sleeping in your own bed after a long time away.

It’s a little crowded just now though. Harry and Bert refuse to leave my side. Not that I’m complaining. 🙂

The two weeks of rest is going well. I have napped and ready many books. I have sipped cups of tea from bed, and coloured picture books as a mindful meditation. Or just for fun.

My mind, free to roam, has surprised me with little extra treats and ideas for my end of year retreat, and for all kinds of other wonderful offerings. I love being able to be in a space of dreaming and creativity – and for me that process seems to work best when I am in my pyjamas. (Hooray for no more breezy hospital gowns!)

I’m doing really well, and the trick now is to keep resting and not overdoing it. (This is always the hard part for me. Do you find resting hard too?) Mind you, it’s challenging to overdo things when you are pinned to the bed by two loyal dogs, and you have a husband and a personal assistant who lovingly growl if I even look like doing anything workish.

Today I’m working on my pirates and fairies story, mapping out adventures and filling in some details about important things for this world I’m creating in my head. Of course that will be interspersed between more naps and cups of tea and cuddles with my boys. Probably my most important story development will happen in my dreams!

Please know that I’m sending you all lots of love. Of course you’re included in my healing meditations each morning and night. Thank you too, for all the healing, love and well wishes you’ve sent me. It has helped heaps!

Hugs and love and all that good stuff, Nicole <3 xoxo

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!

A Me Update

Image from ibnlive.in.com

Image from ibnlive.in.com

“Solar Eclipse

Each morning
I wake invisible.

I make a needle
from a porcupine quill,
sew feet to legs,
lift spine onto my thighs.

I put on my rib and collarbone.

I pin an ear to my head,
hear the waxwing’s yellow cry.
I open my mouth for purple berries,
stick on periwinkle eyes.

I almost know what it is to be seen.

My throat enlarges from anger.
I make a hand to hold my pain.

My heart a hole the size of the sun’s eclipse.
I push through the dark circle’s
tattered edge of light.

All day I struggle with one hair after another
until the moon moves from the face of the sun
and there is a strange light
as though from a kerosene lamp in a cabin.

I pun on a dress,
a shawl over my shoulders.

My threads knotted and scissors gleaming.

Now I know I am seen.
I have a shadow.

I extend my arms,
dance and chant in the sun’s new light.

I put a hat and coat on my shadow,
another larger dress.
I put on more shawls and blouses and underskirts
until even the shadow has substance”
~ Diane Glancy

 

It’s been easy, in recent weeks, to forget for hours at a time, or even days, that beneath my skin lurk a host of bacteria. Lyme, bartonella, babesia and some other nameless beasts. They drill through the flesh and fluids of my interior. Many have been killed over these past two years as I have flooded my body with antibiotics, herbs and essential oils. But not all.

It’s the ones that remain which are so bothersome. Some have not been well targeted by any protocols I’ve yet undertaken. Others have cleverly changed form. They deconstruct parts of me and then rebuild themselves with pieces of my DNA, rendering themselves invisible to my immune system. They slough their cell walls and then slip into my own cells soundlessly, hidden from view. Hidden from drugs. Hidden from so many kinds of treatment.

These past weeks I haven’t thought much about all of these pesky invaders. Instead, I’ve tasted normal. I’ve known delights lost to me for so long I’d feared I’d never know a time for them again.

My body is stronger. My mind is working better. My immune function is the best it has been in years. So my docs asked if I felt ready for a round or two of more aggressive drug treatment before I went back to gentler, more natural methods of healing. Intuitively for me it was a yes – before I even got my bloods back. Yes. Ready. So, we began last week.

I’m lucky – I had the luxury of some free time before I need to be functioning well again for work. Weeks I had slated for writing time and a holiday before I gear up for my next retreats became the perfect opportunity for embarking on new treatment adventures. I knew this was right timing. It all seemed to fall so easily into place for me.

Except that I’d conveniently forgotten just how horrible such treatment adventures can be.

Oh.

My.

Goodness.

It started with vomiting and pain. My body did not like the drugs. Or what they were doing to me.

The misery ramped up as the bacteria within me began to die. Glands the size of golf balls. Night sweats. Fevers. Chills. Seizures. A tongue that rolled around in my head unable to grasp at words, or to make much more sense than a drunk. A brain on holiday. Night and day merged, hours merged. It got messy. Really messy.

Then there was the pain.

I’d forgotten about the pain, and how bad it can be. Body pain. Nerve pain. Brain pain. How did I ever live with this pain before? This loss of function? This rendering of myself into a million screaming and incoherent fragments?

There have been other delights too. Loss of vision. Confusion. Immense fatigue. The kind of fatigue where it takes all you have to lift your head from the bed, or to track your eyes across a room. Indignities such as loss of bladder control. Streaming eyes and nose. Rashes and shakes and parts of me misbehaving, no matter what my brain was bidding that body part to do.

Everything that had become easy was suddenly hard again.

But I know it’s not for long.

I know it’s just for this short window of time, after which this current treatment will end and I’ll step back, regroup and allow my body time for healing and rehabilitation.

There’s not one pill that will fix this. Not one magic bullet. I have thirty years of complex bacterial infection. On top of that, all of the chaos and damage those infections have caused to my brain, my organs, my central nervous system and hormonal systems.

What I’m doing to heal my lyme and co-infections is working. My results prove that. My daily life proves that. But it has taken a lot of gritted jaw to get through this last round of drugs and I have a few more weeks to go. Although I pray I am through the worst of it now.

I’ll tell myself that anyway. Just like I always do…

This is what life is. It’s what I’ve learned over time. Life is ups and downs. Mysteries. Breakthroughs. Dead ends. Wrong turns. Wrong turns that lead to the right places. Breathe in, breathe out. Place one foot in front of the other. Rest. Keep going. Keep growing.

In the ten days I have been on this new treatment three lymies (people with late stage lyme disease) I know have taken their lives. Too much pain, too much damage, not enough support, no access to adequate doctors or treatment, no light at the end of the tunnel, and they each reached the end of their respective ropes.

I understand that space. There have been times over the years – even the last two – when I have sat on that same bench, and had that same conversation with myself and those closest to me.

It puts my own illness into perspective, my treatment into perspective, my recovery into perspective.

I won’t do myself or this illness the disrespect of rendering the lyme journey down into a handful of trite new age slogans. Loving my disease, making peace with myself, loving myself – they’re all noble and worthwhile sentiments, and I honestly do my best. But how many people who got hit by a bus or a dose of MRSA from a hospital stay, or a life-threatening bout of meningococcal disease get those flags waved at them? Who of them would be expected to be healed by the simple waving of a crystal, the chanting of an affirmation or a thorough investigation of their past lives?

For me, a wholistic approach to healing means using intelligent diagnosis and solutions – a range of traditional and alternative treatments. Science. Ancient and modern. Spiritual practice. Drugs. Energy medicine. Herbs. Oils. Intuition. Food as medicine. Doctors and practitioners who use their brains in an investigative manner, allowing space for curiosity and open-mindedness, and a synergy of puzzle pieces. I expect that to be my own practice too. Of course there is room for magic and miracles, of course there is learning to be had. I’m open to it all.

Thanks for all your well wishes, and I’m sorry if my silence had you concerned. But you know me by now. Whenever I’m quiet so long there is always something going on.

I’m busy getting well. That’s what’s going on. Messy business, but I’m making progress, and things will be back to some semblance of normal here just as soon as I have the energy for it all.

Sending so much love your way, Nicole xx

Image from emiliesquotes.com

Image from emilysquotes.com