Doctor, Doctor…

“As my sufferings mounted I soon realized that there were two ways in which I could respond to my situation — either to react with bitterness or seek to transform the suffering into a creative force. I decided to follow the latter course.”
~ Martin Luther King Jr.

 

When do you accept your current circumstances, and when do you keep fighting for change?

As someone who has lived with chronic illness and limitation for much of their life, this is a question I often ask myself.

I’m off to a new doctor today. Well, not so new. I’ve seen them twice before. I hesitate to write anything else at all about them, such is the culture of bullying and persecution that exists for doctors brave enough to diagnose and treat lyme disease here in Australia.

Anyway…

I saw my first lyme doctor back in 2013. They treated me with a hardcore regime of antibiotics and antibacterials, supplements and diet – saving my life and reversing many of my symptoms. But their practice was closed down fourteen months later, leaving me part-way through my treatment protocol and scrambling to find competent care.

I finally found another doctor to take me on.

Only to have that practice close down too.

I managed to cobble together a treatment plan and find other doctors who would treat me ‘under the radar’ but who couldn’t prescribe the drugs I needed to complete my treatment.

I improved a little more, and stabilised.

But slowly the old symptoms began to return, no matter what I did. Peripheral neuropathy, pain, rashes, facial numbness, exhaustion, mental confusion, neurological incontinence and lyme bladder, terrible headaches, eye pain, loss of vision, impaired balance, slow reflexes, sleep disturbance, fevers, sweats, heart problems.

Then I ended up with the flu at Easter, after which my old Lyme symptoms raged with a vengeance. My thyroid function has been almost destroyed, and my antibodies are off the chart. I have ongoing heart problems and vision disturbance which has not improved.

To have been on the road to well, and then to slide back again is terrifying.

To have gained function and then lost it again has been mental torture.

In early March, while I was in the Philipines I made the decision that I would leave Australia if necessary, to access the drugs and treatment that have been proven to lead me to recovery.

When I came home from Cebu someone in my circle directed me to this doctor, and told me they had discussed me with them, and that they would help me.

So, off I go today. I no longer even sit in a hopeful space. I am resolved and resigned. This is my new Plan A. But I have a Plan B and a Plan C too.

I know I can have a better quality of life. I’ve experienced that. And having tasted it I want more.

I’m not done fighting.

So, I’ll keep you posted. Fingers crossed this one is the last doctor I need for a long while.

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…