Tag Archives: auto immune-disease

Forgive, Forget, Accept

Daring greatly, , , , , , , ,

It’s been just over six weeks since I started taking Plaquenil and Lyrica…once again. On the merry-go-round, 27 months in. And yes, I’m still on the testosterone replacement.

I’ve spoken about my rollercoaster. The emotion. The frustration. The desperation.

I’ve spoken about the hope and excitement. Could this be part of the puzzle?

And I remind myself daily….this too shall pass.

I’ve tried to incorporate 10mins of meditation daily, with a great app built by an Aussie, so that’s got to be a good start, eh?

If you struggle to meditate, like I do, try 1 Giant Mind. It’s the only guided meditation that works for me, I feel like I’ve struck gold.

I’ve also been listening to podcasts from Sean Croxton at Underground Wellness, a holistic and functional filter of what’s making us sick and what we can do to make ourselves better.

I’ve started experimenting with the autoimmune protocol by Dr Sarah Ballantyne and have been tending to my coconut milk kefir. I’ve been watching it ferment, patiently…which is ironic, because patience has never been my forte.

For me it’s another opportunity to experiment, to challenge and to watch my body react.

Curious Child_Canstock

And let me tell you kefir has made bathroom visits a delight!

And in the strive for continuous improvement, like every keen Type-A person, I even sought a second opinion from another medical guru.

After 30 minutes of consultation with some of the most random questions I’ve ever received from any medical professional, Professor D, concludes with, “I’d like to help you, you seem like a nice lady.”

And I knew instantly what he meant. Because had I come to him 27 months earlier I would have been classed as “not such a nice lady.”

I was angry. Angry at the world, and at my body, at my former employer…someone had failed, and someone had to work it out…pronto!

But time is a beautiful leveller and I assured him I wasn’t expecting a miracle diagnosis or cure, I just wanted to check whether someone had missed something, somewhere or was this it, do I just need to learn to deal with the pain and fatigue. Is this simply, mind over matter?

“When you walked in the door, I instantly thought – Addison’s disease.”

And then he explained why. The excess levels of prednisone I was on at different points to stop the inflammation. The endometriosis that had been sitting there undetected, possible for years, wrecking havoc with my hormonal system. For some reason, my HPA axis was indeed fried.

“I want you back in a month with all your medical reports and blood results, any by the way here’s a few more.”

Clearly the man enjoys his bed time reading.

So I walked away with a wry grin, but not because there was a possibility of another piece of the puzzle falling into place, but

because I had learnt to accept.

To accept that what could have been, should have been.

And to accept that this is where I need to be.

Hanging upside down with no control stick.

Knowing I can’t guarantee the plans I make – my body evaluates this daily, and even hourly.

But the flip side is that I’m in a more peaceful state.

In a less critical mode.

In a more forgiving space.

I have learnt that it isn’t necessary to forgive and forget, but to simply accept.

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Wile Coyote & Me

Leaky Bucket, , , , , ,

For those who don’t know me, I’m an all-or-nothing person.

I give 110% or I give nothing at all. Mediocrity isn’t my thing, in my mind, if you’re able to do something, do it properly; it’s unfair to not give you’re everything.

Who doesn’t remember Wild E Coyote ‘s dedication? Plotting each and every trap for Roadrunner? As a child I was in awe. The mix of braveness and stupidity in all its glory!

Courtest of Moby Picture
Courtest of Moby Picture

But the lesson I took is if it doesn’t work – try and try again.

This might explain why after almost two years on various auto-immune drugs I decided enough. Let’s go drug free and see what happens. Read: the doctors have it wrong.

That explains how I managed to get back on a bike and cycle 200kms in three days, 9 months after my disastrous freefall into AI hell. Read: I think I’ve beat this now. Lesson learned…thank you. Let me get back to my life.

And that also explains why I think (and maybe still believe) that the only why I am going to be able to reclaim my life is to keep pushing the wheelbarrow…uphill….by myself. Read: the doctors have no idea and I’ve got to work this out myself.

The last month has seen an increasing level of bone grinding joint pain and hot-coal walking nerve pain. By the end of the days my hands ache so much it’s hard to hold the toothbrush.

I spend most of my day trying to find creative places to shove my feet, to keep them cool. And more creative ways, a la MacGyver, to deliver me efficiently and effectively from the 3rd floor living to terra firma, minus the 45 stairs.

I spend 10 minutes every morning reminding myself that no matter how much my knees, shoulders or hands hurt, things will be better once I’m out of bed.

After all, I will be showered by a plethora of Franki kisses. And kisses from Mr Metamucil, if he hasn’t already left for work.

Last Friday, I woke up to my neck seizing and an electrical charge flying up and down the right side of my spinal column. I felt like Wile E Coyote, so excited that he has found the power source, but forgetting to let go.

I hobbled to the physiotherapist with tears streaming down my face… “please make this stop.”

My physio asked what type of pain I was experiencing and how I would rate the pain. Was I still drug free? Now it was her turn to plead, “please go back on the drugs”.

So as I lay on the table, wiping away tears with one hand and trying to keep my shoulder up with the other, I asked, “why is it that my shoulders are so weak?”

And she explained, “you’ve lost your structural strength and being in pain exacerbates this.”

Because it is appears that when the brain has been registering pain for an extended period, collagen which is a protein critical and basic building block that facilitates tendon, ligament and muscle strength can no longer do its job properly.

Researchers have shown that in a chronic pain patient the amount of collagen produced decreases, and of the 19 different types of collagen required the ratio of collagen rebuilding is off-kilter. But the dysfunction continues as the parallel structure which tendons and ligaments align themselves is disturbed and microtears and fibre separations are commonly seen in MRI’s.

It appears in my gung-ho, “I can manage this illness without drugs” approach, what I failed to realise that the creeping pain in my body isn’t the beginning of a bad turn, in fact at a molecular level it’s clear, the bad turn is approaching the end of a cliff.

by FabulousESPG
by FabulousESPG

I haven’t been able to manage the pain messages through mindfulness or meditation. I believe it can work. I have experienced the benefit. The relief.

But that was when my body was still receiving some synthetic assistance. The synthetic assistance I thought I could do without.

It appears, I’m simply not ready yet.

Part of me was hoping that the past 24 months had been one hell of a bad dream and an over-reaction by not only myself but also by the doctors.

Part of me was hoping that I could cure myself by understanding and eating “real food”, being mindful, exercising within reason, getting good sleep and listening to my body.

I’m not proclaiming this is a cure for A.I., but I do believe this has the ability to help heal not only my body, but my mind. And I suspect it is my mind that tortures me more than my body.

But it appears I’m still a little off that nirvana as well.

Intellectually, and deep down, I believe that I can create a healthy and wholesome existence, despite the A.I. honour roll and minus the synthetic assistance.

But I think I got a little cocky. I thought I could see the finish line. I started to take short cuts. And I cheated myself.

And I should know by now…you can’t cheat with A.I. and there’s nowhere to hide.

So at 4pm last Friday, I walked into my GP’s office and placed my white flag on the table and asked, “can we start again please?”

And this is where it starts…

Leaky Bucket, , ,

The last six months of 2012 were life changing.

My life was turned upside down; and I was shaken, not stirred.

Shaken so very hard I didn’t know where I would land. What abyss would I face?

I was hanging onto a final thread, desperate to not let go of what was familiar, despite the fact that it would most likely kill me.

It was like a out take from the Lord of the Rings.

Perhaps Frodo should have let go as well?

I’m a slow learner you see, I’ve learnt that 10 is my magic number. It took me 10 years from the time I could speak, before I could find the words to leak my childhood secret. And at least 10 therapists since then to keep me sane, assuring me that my responses, behaviours and thoughts were ‘normal.’

10 days before by 35th birthday, I experienced debilitating fatigue before my body collapsed into a heap. 10 days after my 35th birthday to accept that something was wrong, and I could no longer push through. 10 weeks to hit absolute rock bottom, wondering if it was all worth it. And just as long to let go, if only just one finger, off that ledge peering into the abyss.

Bottom of well_canstock

How did I get here? God knows. I am the overachiever, type-A personality. I suffered childhood trauma, that has never really been resolved. Is it meant to? I’ve learnt to stay under the radar, work hard and people will notice your efforts. Mistake #1, of volume 10.

I’m not very good at asserting myself. At the back of my mind I don’t think my opinion is of any value. Again, childhood conditioning contributed to this.

I avoid conflict. I don’t think I was ever taught how to disagree without taking it personally or fearing I will hurt the other person. Whether it’s a debate over the dinner table about refugees and their right to seek asylum or whether I should tell my mum, 4 calls a day to check on my welfare, is a little over the top.

So I either avoid conflict, a difference in opinions, or if I’m really worked up…it usually ends with me in angry tears, feeling uber-tense and/or infuriated or leaving the recipient/s bamboozled. Not quite conducive to interpersonal relationships. This also explains why I was single for so long.

As you can see, I’m pretty au fait with my weaknesses. I just don’t know how to turn them around. And you can be as enlightened as possible, but without the ability to transform…it’s just a choose your own adventure book with only one option.

I’ve now been diagnosed with Chronic Fatigue Syndrome, Lupus and Hashimoto disease is rearing its head.

No point asking how I got here.

The question is: how can I move from understanding my emotionally constipated state to adding some fibre?