Lyme Schlyme!

“I keep sailing on in this middle passage. I am sailing into the wind and the dark. But I am doing my best to keep my boat steady and my sails full.”  ~ Arthur Ashe

The past few days have not been among my best.

Physically I’ve struggled.

It started earlier this week, of course, with feeling good. I should have seen it for a warning…  but at the time I thought it was fabulous. I had a welcome burst of energy.  My mind felt clear. I was optimistic, even as I was getting bad news from my doctors.  Even as I rearranged the deck chairs on my sinking ship.

I felt okay for three beautiful days. On the third day I became brittle. A crankiness pushed its way to the surface, and as fast as I stuffed it back down it seeped up through the cracks in me. A rash stippled my cheeks, shoulders and back. People mistook it for health and told me I looked well.

By nightfall I felt wired.  But then I couldn’t sleep.

All night I lay in my bed, tossing and turning. Beyond exhaustion I greeted the day bleary eyed and empty-headed.  Then I began to flush, and my skin shimmered and shivered as though it was lit up with white phophorus – burning with a bright cold fire.

Next came the sweats and the chills. The throbbing pain in my head. The familiar and awful pressure in my ears, and in my eye, which twitched and clouded until I could no longer see from it except through a fog.

The agony of herxing from my lyme meds, my lyme herbs, my lyme diet.

I’ve had seizures, gut cramps, profuse vomiting and diahrroea.  My left hand has trembled so badly that I have been unable to write for two days.

Bright light has been unbearable.

And mentally, I’ve been down the darkest of holes. It’s been all I can do to keep my head above water.  And sometimes I didn’t, and felt the burn in my lungs of a drowning woman, so broken she was almost out of fight.

Last night, finally, I slept.

This morning my hands are steady and my skin is cool. I’m empty and wrung out, but I can tell there’s been a shift. It’s as if a storm has passed and I have been washed up on the shore; firm ground underneath me, clear and benevolent skies above.

The light still bugs me. But I can wear dark glasses and a hat. (I am wearing them as I lie in bed to type this, my screen dimmed and the small bedside light angled away.) I’m still exhausted, but I’ll crawl back under the covers soon and surrender to sleep. The world seems kinder this morning and my heart has found a way to feel good about life again.

I’m three months in and counting. Only twenty-seven to go.  I can do this.  Two and a half years of treatment is a small price for the chance of reclaiming my health.

But don’t call me brave.  Don’t say I am inspiring. You didn’t see me snivelling and sobbing over the toilet bowl.  You didn’t see me broken and despairing and fearful. I am where I am, and I am doing what I have to do. I suffered many of these problems before my lyme treatment. And worse. I was on a rapid downhill slide. At least now my suffering has purpose.  I am so sick because so many bacteria inside me are dying. War is always messy, and there will be collateral damage. I’m okay with that. It’s a relief to finally be fighting instead of gracefully accepting a fate I wasn’t ready for.

I value my life, and it is no longer enough to live so small, fitting my existence into that ever-diminishing box that is chronic and degenerative illness.

I want to know freedom, I want to know energy, I want to hold wellness in my hands, and to greet the day with a sense of possibility, instead of mustering gratitude for having survived another day.

After the storm, a rainbow.

After the storm, my life…

32 thoughts on “Lyme Schlyme!

  1. Dear Nicole,
    You have been in my thoughts and prayers. Just last night while I was cooking you flashed across my mind and I got that there was something seriously amiss.
    So I was delighted to see your email in my box this morning as rough as it has been your spirit shines through. The time seems long now and I know that feeling.
    Sleep and rest today
    Love you and your courage
    Suzie XXOO

  2. My Momma told me (as I too, this week, was tied to the bathroom due to painful gut spasms) that being brave isn’t being fearless… it’s having lots of fears and moving forward. I know it may sound cliche`, but somehow it never fails to comfort me.

    “I want to know freedom, I want to know energy, I want to hold wellness in my hands, and to greet the day with a sense of possibility, instead of mustering gratitude for having survived another day.”
    ME TOO!!! It’s coming. We will get there.

    So far the only clues I have to what’s wrong with me are:
    thyroid disorder (which is medicated, and therefore, they ignore/deny that I [‘could’] still have symptoms from it, never mind that I have symptoms that still mimic unmedicated disorder)
    family history of ‘nonspecific’ symptoms- like intense itching, diarrhea, and intolerance to heat.
    anxiety…. which could be the cause of All the symptoms.

    I certainly am not going through what you are. I know that.
    I am praying for you and sending you love and light. We’re sisters in humanhood.

    Glad to hear from you again. I noticed the lull in posts, and prayed more.

    Love,
    Mia

  3. Nicole when i read your much awaited blog this morning i thought of one of my favourite songs and these words that have eased my pain at times! and want to share with you. Sail on silver girl, sail on by
    Your time has come to shine
    All your dreams are on there way
    See how they shine.
    and yes Nicole whe’re all sailing right behind you.
    With love in our sails! “The love Amada”
    Sleep well
    Much love.
    Lyn. X

  4. Lyme suxs! I feel furious that it is hurting you so much. Even though those little spirochete bastards don’t care what they’ve done to you, I do.
    If there was a way people could help you beat up the Lyme bacteria, I’m sure there would be a line of people around the block waiting to punch them in their stupid, opportunistic faces.
    I wait for the day when every single bad bacteria has had it’s arse kicked and you feel permanently better.
    Love Louisa xo

  5. We’re all human. We all hate to be sick and in pain. We all cry, swear, stamp our feet, throw things, and want to give up sometimes. That’s why we relate to your posts — not because you’re stoically brave or perfect — but because we respond to your honesty and, in our own individual ways, we can relate to your journey. Big hugs to you, my friend.

  6. Not sure of words to say…., know that you are in my thoughts & I wish you the strength you need in mind & body xxx

  7. When we don’t hear from you, when your words of magic and encouragement don’t appear we know you are struggling and fighting for your health. When that happens extra prayers go your way, you are held in our thoughts and hearts. Bless you, xxxxx

    • I too have the same thoughts as Lindy has succinctly expressed. I knew there were more Drs this week and also factored in time to recover from those events too.
      May your furry nurses also continue their unconditional love and support (they don’t care what you look or sound like, it’s still you they see). Love, light and very big hug. xoxo

  8. Dear Nicole, I echo a lot of what has been written above. We look forward to and accept with gratitude your kind, deep and wise words given to us so freely here in your blog and with your work, so when there is a lull in the proceedings we now know that you are in need of an extra boost of positive thought and prayer energy to lead you through the next leg of this “schlymey” journey. Rest for now. xoxo

  9. Dear Nicole so glad u are back a bit with feet planted firmly on the sandy shore whilst gentle foamy waves ripple across you toes instead of being tossed about in a wicked grey churning sea with a bleak gun metal grey sky. Sending floods of love and duvet soft feathery pinkiness to enfold and comfort you. Hold on tight it may be a hell of a ride but it really sounds like you really gettin there. much love…xxxxx

  10. Survivor to survivor,
    I honor your journey, your words eloquent.
    Each day still a blessing, blessings I welcome with gratitude.
    Love and Light always…

  11. Oh gosh Nicole. Your post brings back memories way too close to home for me. Herxing like this is hell and often hard to describe to others what it’s like, but being a writer, you manage describe it oh so well.

    Sounds like you’re having a very nasty herx. 🙁 Clearly your ‘friend’ Babs is not too keen on your current protocol which must mean it’s working, as you already know. Ginger might help with nausea and vomiting. Chewing on ginger, if you can handle the taste, or drinking Bundaberg Ginger Beer really helped me when the ABX made me feel miserably sick. It won’t ‘cure’ it, but it might take tone it down enough to give you some peace.

    You’re an amazing woman with more strength than you probably even realise. Babs (and any other nasty co-infections) don’t stand a chance… You have been and continue to be in my prayers. XX

  12. You’re inspiring to me :). After having a violent reaction early on, I haven’t even managed to get onto the full dose of my Lyme meds (the herbs aren’t even on the radar yet) to start the countdown for my 2-3yrs of treatment. Thank you for sharing your journey. I often re-read your posts when I’m up sick in the middle of the night, and I don’t feel so alone :).

    Love and light,
    Another Nicole

    P.S. I found a Petition to the government on Change.org for Australian Lyme patients to receive recognition. I don’t know if you saw the segment on The 7pm Project where the Health Department continued to deny Lyme’s existence in Australia. Perhaps it will stop others from getting so sick in the future.

  13. I’m so sorry you’re going through all of this. But you can see from your many commenters that you definitely are inspiring. Inspiring is often just hanging in there when life sucks, and trusting that one day it won’t. That day will come, so just hold on, mmkay? Much love to you. xxx

  14. As everyone above, I too have been sending healing thoughts and love as you are such a diligent blogger, I knew something was amiss when my inbox was ‘blogless’. Know we all send love and healing bubbles. Wish we could do more Love Cherie xxxxx

  15. Gosh Nicole, I can not believe what you going though my darling . I missed your blog so much on Fri and now I know what you have been going though . You take care …no one so kind and generous as yourself should suffer so much . My heart is with you like so many others .
    Love another Cherry (this one as in fruit) xxxx

  16. Yes, as someone else said, whenever we don’t see you, WE KNOW. You are always in my thoughts & prayers, Nicole. Showering you with Healing Light and LOVE LOVE LOVE xox

  17. Wow, what an ordeal, I don’t know what to say except I too will pray for you. You’re such a sweetheart that I feel sad you’re having to go through all of this.

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