“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.
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
