“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.
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.
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:
- No longer dying! (Yep, I rate that pretty highly.)
- 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.
- I can write, and hold a complex story-line in my head.
- My Hashimoto’s has resolved enough that I no longer need thyroid meds.
- I am no longer on any drugs.
- I am seizure-free.
- Gone from 17 brain lesions to 3. Those three are shrinking too.
- Massive, massive improvement in cognitive function.
- Short and long-term memory working better.
- I can do maths again (after over twenty years of not being able to place numbers sequentially or do basic math tasks).
- I have more energy for daily living, and can now do small amounts of exercise.
- My capacity for work is now ten-fold!
- 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).
- I am sometimes well enough to drive.
- My food allergies and intolerances have gone.
- My pain levels have diminished significantly.
- My incapacitating frequent headaches are down to an very occasional blind-siding incident.
- My vision is almost normal, except when I am tired.
- I am arthritis-free.
- Liver and kidney function and all bloodwork vastly improved. Vastly!
- I am able to have an occasional late night, an occasional alcoholic drink, an occasional socialising event like a normal person would.
- I can climb stairs and hills and still breathe. No chest pain. No breathlessness. No recovery time needed. Exercise is now my friend.
- I can follow a movie, read a book, hold a longer and more technical conversation.
- 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!
- I am well enough to travel again.
- 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:
- 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.
- 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.
- 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.
- 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.
- 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.
- Optic nerve issues and occasional loss of vision in left eye. No biggy, but annoying.
- 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.
- Memory-gone-on-holidays moments. Especially when tired.
- Brain overwhelm from too much stimulation. Which then leads to poor sleep.
- 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.
- 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.
- 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
<3 <3
It’s taken me a bit to read through this and digest it all. You are an inspiration for me. There were days when I was ready to be done with it all and I’m not nearly in the state you are. I’ve been reading a book I thought you might be interested in. I think it’s new. “Medical Medium” by Anthony William. I’m now struggling to get rid of Candida and he has a whole different take on it from others. Along with the damage of the Bells Palsy, I’m still looking for answers too. Same problems you have with driving and balance. Not so much pain but fatigue. Picked up a C-pap machine this morning. Almost $400 on a social security income. Doctors on occasion, try to help you heal but most have their hands tied by bureaucracy. Anthony William has a whole different take on the mystery illnesses and wondered if you had heard of him and your opinion. Desperate though not as ill as you have been but still looking for answers to wellness. The world of medicine frustrates most of us and I’m thrilled they didn’t manage to kill you off. Still keeping good thoughts (and prayers) for your full recovery. Giant hugs. Marlene Herself
Well done Nicole!!! 😊
I’ve been on the same journey….what a ride 😁. Now living in England and on a herbal and supplement regime…have done a lot of my own research and I’m almost back to fully functioning…except major bad reaction to alcohol so I know the babesia is still on lock down.
I’ve been quietly reading your blog for some time now & you are always an inspiration. And while I am physically back to normal, my cognitive skills are nowhere near as refined as yours are….I’m finding it hard to mentally motivate myself let alone others….so you truly are amazing :)).
Stay wonderful & all the very best
Celeste xx
Hi Nicole I never really know if you get my messages …I hope you do . It has took me a couple of days to read your post because I read a bit , then a bit more , then all over again ,because I can not belive what you have been going through . Don’t get me wrong, I have followed your journey for the last maybe four years , so I know all about the illness that has struck you down , but reading it in black and white just shakes me to the bone . .
Through all your illness you have managed to get me through mine with your constant positive ideas for life and meditation and giving so much will all you have had to endure you deserve a medal . I have to say …love you and thanks . Just keep on getting better I m thinking of you .
Cherryx
Hi Nicole, I had a reading with you several years ago. Over the past few years, I have read this blog often. I just want to share that I think you’re amazing! What an incredible and horrendous journey you have had. Despite this, you have also had such a strong Warrior Spirit to stay with it and go the distance….and still have moments to play in the beauty of life and to share your pain, joys and wisdom and some mean recipes for food and life, with the world.
There’s a lot about Lyme disease, which along with many other things, is actually purposely being, supressed. All the very best to you, as you continue on your journey to recovery.
Hi Nicole, it sounds like you are on a huge journey of life and recovery and I do hope, from the bottom of my heart, that you continue to improve. And I send you my warmest wishes. You are an inspiration.
How truly sad about Doctors in this Country and their attitude to Lyme’s disease.
Change.org do petitions, I am always getting invites to sign some petition or another. Would you like me to start one for the recognition and or treatment of Lyme (or maybe ask Dana to do this for you. (That way you’ll get a better wording)
Congratulations on your improvements despite our Health Service….
Awesome indeed..good on you girlfriend for not dying on us yet!! and for your inspiration to not only Lyme sufferers but to all folk with healthy ailments and for those of us struggling to find our place in this world. Love you bigtime….XXX
arrghhh…that was supposed to be ‘health’ ailments…time for a cuppa!
You are an amazing woman Nicole. Sharing your healing journey through all its ups and downs is courageous, and definitely inspiring to myself and many others on healing paths as well. Thankyou.
So good to hear such wonderful updates 🙂 There was a segment on ABC’s 730 Report last night on lack of medical recognition of Lyme and had been thinking of you.
I still find it amazing that doctors in Australia continue to refuse to acknowledge the existence of Lyme disease here, despite all evidence to the contrary. Fingers crossed the upcoming senate inquiry will bring this disease, and its treatment, out of the shadows.
You are a miracle. . .love and strength incarnate.
So grateful to see the progress you’ve made since being diagnosed, and feeling privileged that you’ve shared so much of your recovery journey with us, Nicole. Heartfelt prayers for those Lyme sufferers who still need to connect with that brave doctor, who is willing to treat with conviction amidst the known risks. Awaiting the announcement that certain Governments have finally gained a conscience.
What a courageous and strong woman you are! I know of a Canadian woman who was diagnosed with Lyme and was in the same doctor situation as you. She finally found a doctor who was about to retire and didn’t care if they shut him down. I really do not get it. I thought doctors took an oath…and isn’t cancer, RA…any illness controversial.
I know. I don’t get it either…
What an inspiring post Nicole! So good to hear your story and where you are at. Your self care posts and strategies always resonate with me and I’m so grateful for what you share. Amazing that you are able to support and inspire so many people while managing a chronic illness. Take care xx
I truly believe it has been my spiritual work that has kept me here! Much love xx
Lovely to hear of all the positive progress. Your recovery has been remarkable given its only just over 3 years, considering all the nooks and crannies that Lyme had infiltrated. Keep on keeping on. (by the way, you would not be alone in thinking 10pm is a late night 🙂
It seems like so long ago, that place where I was. Thank goodness! (((HUGS)))
This post fills me with *such* joy.
I’ve seen you in not so good times and to see how far you have come is wonderful. The pains are well, a pain, and an annoying reminder that you are getting there but need to continue to look after this newly refurbished body of vigour, vim and (ever increasing) vitality. <3
Amen to that! And to colouring and endless cups of tea xx
You’ve come SO far. I remember having to cut up your food when we went out once and hold your hand walking up and down stairs. I also recall when I had to walk *really* slowly behind you up the slightest incline at the farm because you were so puffed – and then there was your balance, or lack thereof. I’ll always be here to hold your hand, cut up your food and have your back. It’s amazing the improvements we’ve both seen in each other. Ain’t life grand? Over New Years’, I’d never seen you so well, but I know you still have a long road ahead which people need to take on board. So grateful that you’re no longer dying (it’s a great feeling, innit?) and that life is resuming. Love you f*** tonnes XOXO
Thank you, beautiful friend. The kind of friend who cuts up food and holds cups and doesn’t mind if I wet my pants or have uncontrolled vomiting in public places. Hooray to both of us being well, and hooray for friendship! Love you too xoxoxoxo
Oh, the vomiting and peeing! How could I forget? We still managed to have some wicked fun, though 🙂 Hoo-effing-ray for better health and for our amazing friendship. Big love XOXO
Congrats on your recovery so far. Beautiful/heartfelt post. What am crazy disease, right? I hope you’re potentially treating for co-infections/mold as well. So many other critters creep in when we have increased susceptibility from Lyme. Sounds like you’re doing all good things, and I feel confident you’ll figure out the right recipe to get you over the last big humps. You’ve got this!
Thanks, Becky! Yep have also been treating for Bartonella, Babesia and Erlichia. Mold too. So exciting to be on that path to well at last. Hugs and love to you xx