A Little Lyme Recovery Update

“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:

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