Nic’s Latest Update: Life as a #Lymewarrior

brave

‘Brave’ by WillowWaves at www.deviantart.com

“O snail
Climb Mount Fuji
But slowly, slowly!”
~ Kobayashi Issa

“Bran thought about it. ‘Can a man still be brave if he’s afraid?’
‘That is the only time a man can be brave,’ his father told him.”
~ George R.R. Martin, A Game of Thrones

 

Ah, Lovelies,

I’d hoped to be bringing you a good news post, a happy ‘post-surgery things are looking up’ story. And it is true, some things have improved. I am out of hospital. I am home in Brisbane, although not yet home to my precious farm. After an entire month of having my hair in a bun on the top of my head I have finally gotten all the knots from my hair and washed it (a three day effort that only others with chronic fatigue or pain will understand!). I have moved from a shuffling gait to a slow walk.

But I’m not as far along my healing journey as I had expected. Because, you see, having Lyme Disease complicates everything.

Having Chronic Late Stage Lyme Disease means that I’m immuno-compromised. Which is why I picked up two infections pre-surgery, which were treated with a metric tonne of antibiotics to get me infection-free before my operation. Treatment worked, but I was a ball of misery as the antibiotics killed not only my infections but lyme bacteria as well.

Surgery went well. Longer than expected and more complicated. I needed unplanned bowel and bladder surgery and repair. But I came out of it strongly and was making a good recovery, even on the new metric tonne of iv antibiotics and antibacterials I was given.

Unfortunately I then I caught a new infection (via my catheter we think) just as I was getting ready to leave hospital the first time. Tests showed it to be an antibiotic-resistant urinary tract infection superbug. It still responds to some old-school antibiotics, but not regular ones, so I was placed onto those.

One tablet, three times a day.

Which should have cleared it. But it didn’t, so now I am on massively increased doses. This old-school antibiotic is also used to clear late-stage lyme (but my urologist and gynecologist know nothing about that – Lyme is well outside their fields). It targets and kills the cyst form of the bacteria by damaging its DNA. Awesome news. So now I am on a drug that kills my superbug AND lyme. (The typical Lyme dose of this drug is just one tablet three times a week.)

Lots of lyme bacteria dying means lots of herxing. So now I am in agony. It hurts to pee. It hurts to poo. I can’t see out of my left eye, and vision is distorted from my right. I am sensitive to light and to sound. My skin hurts. My teeth hurt. My bones hurt. Old injuries are aching and paining. My muscles spasm and cramp. I have a killer headache. I am hot and cold in turns. I can’t sleep. It feels as if someone at odd times is tasering me, or pouring acid on my skin. And then there is my belly wound which goes from hip to hip, and the fact that my insides feel like someone has stitched them into a too tight sausage casing and then punched me in the gut a few times for good measure. And the pinched nerve in my back which has rendered one arm numb and painful and much less mobile than usual. Which instigated a case of shingles. My balance and strength is shot and I need a cane to walk. Let’s just say, it is not one of my better adventures.

I spent most of last night cry-laughing on the toilet. Because of my recent bladder repair it only holds about 200ml of fluid before I need to go, and I need to be drinking LOTS of water right now to flush both the drugs and infection from my system. Peeing hurts. A lot. Before, during and after. Although at least the feeling of pissing razorblades has resolved as the antibiotics kicked in and began working on this little superbug of mine. Now it only burns. So I sat on the toilet more than I was off it. Crying and laughing at the same time, because it was funny but pathetic, and scary but also ridiculous, and as I cried and laughed I panted power phrases like ‘This is just f*cked’ or ‘You can do this, Nic!’ depending on what frame of mind I was in for any given minute.

My friend Jennifer visited me while I was in the hospital and gave me a little bracelet. Inscribed on it is the phrase ‘Be Brave’. Those two words have been a constant reminder to me in the past few weeks. Be uncomplaining. Cry if I need to. Pull myself together. Chin up.

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I am mostly coping okay with the pain and lack of decent sleep. I am being well cared for by Ben, Nurse Bert, Cafe Dog and my dear friend Carly. I have everything I need. The hard thing is my vision loss (which is a temporary situation, we hope, and one I have faced several times while undergoing Lyme treatment in the past). This last fortnight I have had limited vision. My left eye is a complete blur, and my right eye has a restricted field of blurry vision – if I wear glasses, cover my left eye and increase my screen magnification by 300% I can read for short periods, but it is exhausting and gives me a headache. I can’t write. The television is a blur. Do you know how much stuff you suddenly can’t do when you can’t see?

I can’t check my messages on my phone or my emails. I can’t see my phone well enough to call a number – but Siri is getting good use as I task her to read my texts or call my mum. I can’t blog or update you. (I needed help to get this post written and published.) I can’t read any messages you may have written to me, so forgive me if I have not responded. Thank goodness for audio books and imagination land, and for good conversation in small doses.

I’m also exhausted, and after ten minutes of anything I am ready for a nap.

It isn’t where I expected to be, four weeks after surgery, but this is where I find myself. Nothing to do but wait for improvement.

I am good at sucking it up. Truth be told though, I am more than a bit over it. Still, it is what it is and it will get better – just maybe not in the timeframe I’d hoped for (and I am ALWAYS impatient!)

I’m missing my Year of ME Planner and choosing oracle cards to guide my week. I’m sad to be unable to tick things off my to-do list. From experience though, I know that it will all be waiting to help me get back on track again with all my dreams and projects just as soon as I am able. Meanwhile my wonderful team are working on all kinds of lovely things for next year’s Planner, our upcoming courses and retreats, and my new website. (Thank you Dana, Bek, Kerry, Chelsi and my PI transcription crew!)

I’m still sending you so much love in my daily meditations and healings, and I’m grateful for all the good energy you’ve sent my way too.

Hopefully things will sort out sooner rather than later and normal programming will resume. I’m looking forward to that. I AM getting better, it’s just a slow and bumpy road. Fingers crossed that my healing gets fast-tracked very soon. I am choosing to see all of this as a fabullous opportunity to kick Lyme’s butt in a bigger way than I had ever dreamed!

Hugs and love, Nicole xx

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46 thoughts on “Nic’s Latest Update: Life as a #Lymewarrior

  1. Surely you have found bedrock now! The good news for that is there is only one way to travel and that is up. All I could say would be platitudes so I’m not going there. You know the drill so well. Sending you lots of love for a miraculous turn around. XXXXXXXXX Lyn

  2. Just terrible this bloody Lyme disease. You will be better, you are a warrior and you are so very brave. I wish I could do more to ease your pain but know that you are in my thoughts, my meditations and I’m sending you much healing light and love. 🙏🏻💜

  3. Hi Nicole
    That sure is A LOT to cope with, I can’t even begin to imagine what it must feel like. I’m so sorry for you. I’m so hoping for you that all these antibiotics will really kill the Lyme disease off as much as possible & for you to come out of this ordeal feeling so much better than ever before. Have patience as your body heals.
    Lots of love to you for your recovery.
    XxxNat

  4. Your resilience, patience and mindful attitude is astounding. I’m so sorry that you are enduring this Nicole. Enough universe, send this light worker some relief. You’re in my prayers.

  5. Oh my darling Nicole. … you are the bravest person I know! Sending you so much love and healing. Wish i was closer to come and help, you are always in my thoughts. Thankyou for sharing 😚🌹🌷🌼🌻🌺🌻🌹 xx

  6. You are brave Nicole . Life is a challenge that’s for sure . Just know we are all praying for you and sending healing energy your way.

  7. Oh Nic! Brave?! You are amazing! Wishing you a speedier and full recovery soon. I’m with you praying that although this experience is THE PITS!! it is totally kicking those lyme bugs for good! Rest and recover lovely. I’m glad you have your support team there and in very good hands. Sending much love Julie xx

  8. Oops my comment was just posted in my husband’s name…. and it said it is waiting moderation. So here it is again.

    Lets hope this increased dosage really sorts out the Lyme good and proper. Hang on to the positives. Although it is a slow arduous road, you will get there. Sending love and healing now and in tonight’s meditation. Take care xxxx

  9. Thinking of you SO much, Nicole. Sending you tons and tons of LOVE. You’re a fighter, an inspiration, a Super Woman. Keeping you in my prayers, always. Hugs & Tenderness, Mudd xox

  10. All nurses should read your description of how it feels to be sick. I think it is the most vivid and accurate account of infections post surgery. I am sorry that it has happened to you. It HAS happened to you because you can then describe it to others. You CAN cope. (not that you would want to)
    You have that innate ability to find positives through the crap. Even through pissing razor blades, (a very accurate description) at least there is another positive. Bloody Lyme disease. Treatment that you don’t have to fight to receive. Yay!!!
    Hopefully it won’t be too long before you are back on the farm.
    It was lovely to read this post and know how you are doing (even if someone else typed it.) We know you are still kicking arse.
    Love and healing soups and foods
    Mxxx

  11. You are having to endure more than anyone should. So sorry you’re going through this pain and I pray it can be taken away by the beautiful healers and angels around you and with God’s help. Your posts are so uplifting when we’re going through tricky times and helps put our pain into perspective when you’re enduring far more. XxxCasana

  12. Dearest Nicole,

    Was eagerly awaiting an update on your recovery and your elaboration of your current status stirred pain and sorrow deep within. As you said, you are on the road to recovery, and we can only hope that it not get any longer on this trying journey. Praying that you get well sooner and the pain and trials leave you even sooner. Lots of love and hugs.

  13. You are a warrior princess. You is strong. You is brave. Cry/laughing is a great strategy – Lyme will be confused : “have I kicked her butt ?…. seems like… that’d be a NO… since she’s laughing”. You are amazing. Sending you lots of love Queen of Hearts. You’ve got this!
    Urinary tract infections are bad enough when you’re not battling post surgery, lyme and other things… You’ve more than learned the empathy lesson – you have more than enough than a normal human has and you need to be tested no more! Begone you little buggers! Leave Nicole alone!
    xoxoxoxo

  14. OM gosh, beautiful girl, this is too much and so hard to read. Your resilience is such an inspiration to each of us no matter where we are on our own journeys. Stepping up the prayers and meditation. Sending you lots of healing energy and hugs, Nic. Keep that smile going. Love Michelle xoxox PS: Sending lots of thankful love and hugs to Carly, Ben and the boys, too.

  15. Dear Nicole, reading this through hot, blinding tears. So sad that you have gone through so much in the past month. Sending love, healing prayers and wishes for a fast tracked recovery xx❤ xx

    • It seems to me that kind ,loving,compassionate people suffer so much. I don’t understand Nicole as you know I suffer every day too. I have tried everything to get better and it seems like I’m being punished for being a good person. You are not alone but we have to keep our faith that we will get better.
      Feel better,
      Jo -Ann

  16. Namaste Nicole…..its so good to see your post finally….been wondering lately how you are coping up with recovery & the silence in the blog page was concerning,…sensing from your post that post surgery recovery has its complications & difficulties….but pls stay positive & BE BRAVE….sending loads of love,hug,prayer & light…..Kalpa

  17. Oh my. You brave brave brave person. and you still get an update out and remain upbeat and honest. wow. You are beyond amazing, an inspiration to us all. Sending you so much light and love.

  18. Laughter thru the tears……….with this, you know this hurt will find its end!!! Sending lots of prayers, hugs, and love your way for an even quicker recovery……….Blessed Be!!!

  19. Your never fail to inspire me, Nicole. You’re an incredible, INCREDIBLE woman. Yes, we all are, but you especially. I’m truly wishing you a speedy recovery and so much health and love right now. x

  20. Sending you lots of love Nicole. I don’t comment often, but I read everyone of your posts. You truly inspire us to live courageous authentic lives. Thank you for sharing your struggle with us and sending healing energy your way xx

  21. Dear Nicole, I turned to my cards when I read your post – and the one that I picked is from Doreen Virtue’s healing deck – “inner authority” – ‘Archangel Raphael encourages you to use your own power and authority. Raphael will hold your hand throughout this experience, empowering you and giving you courage’ May you be reminded of all the support you have around you – those in your home, those online and those of the light – and may that give you bravery and fortitude in the darkest of moments. much love xoxo

  22. Nicole,
    With all my heart, soul and mind I am sending prayers your way! You don’the have to always be brave, it’seems ok to curl into a small ball a d cry your heart out. I am glad you are allowing others to care for you. Sometimes that’s the hardest thing, accepting help!
    Many blessings and positive thoughts fir restful, restorative sleep.
    Much love,
    Debbie

  23. Oh, little one. . .be patient if you can. . .be kind to the healing process. It is loving you in so many ways. It is keeping you safe and contained. Just a bit more time and love and essence of chicken soup for your soul. Thank you, boys, and all beautiful beings for watching over our muse. Hold her close.

  24. You are so brave. You’ve gone through so much. Your journey such a test. Please know that I think of you often and wish that comfort will come soon.

  25. You have been in my prayers and meditations and will continue to be so. Thank you for always sharing the good, the bad, and the ugly. You are such a true warrior!

  26. so much love and healing to you dear Nicole, what an absolute gem you are, I am constantly amazed at your admirable perspective, looking on the bright side & continuing to share so lovingly with all of us, your online tribe… Sending special NZ pounamu(greenstone) healing vibes and loads of laughs & love (my twin 2yr old boys LOVE you too & when they see your face on a screen they say ‘Nana’) 😀

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