Tag Archives: leaky bucket

Description of my body as old habits create havoc in my body – physical & emotional

Let’s get ready to rumble

I’ve been a bit quiet on the writing front.

Despite the fact that I schedule 1.5 hr every week to ramble, edit, find a good pic and publish, my unexpected and sometimes tumultuous life just gets in the way.

I also do a lot of marinating (and perhaps procrastinating).

What I’ve read. How I’m feeling. The latest blood test results. What the naturopath is suggesting. What the latest science journal says. What the latest podcast proposes.

The next holiday. The next bike ride. Will I ever be able to do more than 20 mins a day? Will I ever enjoy the freedom of hiking faraway trails, pitching a tent and for a moment, just be there…in that space.

Boxing girl_Canstock

And then I have to remind myself to stop the nostalgia shit. It’s not helpful.

Today is different. From yesterday. From last month. From last year. From August 27, 2012.

My ever-evolving auto-immune world, continues to spin on its merry axis. It would be nice to know where to next though.

Confirmation that I have HPA axis dysfunction, bordering on Addison’s disease. Yet more labels. More tests. More peeing in funnels.

I’ve basically fried my brain’s circuit board that controls the messages to my body to manage hormones. In its crudest term the 4 S’s are completely out of whack – sugar, salt, sex and stress.

Was it all the steroids I was given to control the severe bouts of inflammation or was it the enormous stress driven by the need to achieve, perfect and be seen?

Was it the perpetual flight/fight response turned on early in my childhood? Was it because I never felt safe, until my mid-30s, to put down the armour?

It doesn’t really matter, but it does explain some basic physiology and the development of dis-ease. No testosterone, too much progesterone, a spluttering and spurting thyroid, layers of endometriosis and simply not enough cortisol.

What a relief!

No more beating myself up over that second soy latte at 3pm, which can be bad for most people, let alone those with various auto-immune disease.

My body simply doesn’t create enough get-up-and-go over the course of the day, so right now I’ll keep investing in my local coffee haunt, which Franki doesn’t seem to mind either.

It also explains that when I push that little bit more, don’t give myself enough rest over the course of the day, run from one thing to another (99% of the time in my head), or have a crap night’s sleep, I can guarantee I’ll wake up to aching hands, grinding knees and an overall feeling of heaviness. There are days where I can even feel the weight of my eyelids and every single blink.

On those days, it’s simply a case of cause and effect – I’m spending pennies I don’t have. And then I remind myself.

This makes sense.

Because the most frustrating part of the last 2.5 years hasn’t been the multiple diagnoses, the furrowed brows, the experimental drugs, the grinding pain, the overwhelming fatigue, a life that has changed.

The frustration was that it simply did not make sense.

I couldn’t see a pattern. I couldn’t manage my day. I was fighting wildly, valiantly…but blind.

It’s a slow, painful and frustrating experience (call it journey if you’d like).

It requires patience I didn’t know I had. And patience I didn’t think I could muster. But then I heard the definition of patience from a 4 year-old, “Patience…wait & whinge.”

Yes, I’ve spent a lot of time waiting and even more time whinging. Because sometimes you’re waiting for the light to turn on, for a chance to put on the gloves, prepare yourself, so the fight is fair.

Upfront, in your face, visible.

But most of the time it’s not.

So I guess I’ll just need to learn to swing, duck and brace at the right times. And if I can’t see, and I don’t know where to aim, I’ll need to learn to feel and to sense.

Perhaps even trust myself. The innate. The gut feeling, once again.

And when I go down…at least I’ve already learnt how to get back up.

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Wile Coyote & Me

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?”

Be Gentle

This is my catchphrase to Franki.

Be Gentle…there’s no need to snap the food of my hand.

Be Gentle…that little kid just wants to pat you.

Be Gentle…as the rough and tumble play escalates.

I’m sure Franki has no idea what those words mean. Perhaps it’s the intonation of my voice. An alarm that something isn’t quite right, but an indication to tone the pace, enthusiasm and excitement back (a little).

 

Curious but gentle

I notice that it’s not only Franki that is learning when and how to be gentle…So am I.

Be Gentle, Deborah….that email doesn’t have to be answered immediately.

Be Gentle, Deborah…it’s not a race to prove you are a strong rider.

Be Gentle, Deborah…there are no prizes for who can hold a boat pose the longest.

As the last 18 months have been trying to show me, I need to learn to be more gentle…with myself, with others.

Living with an AI ravaged bucket, means that if I keep filling the bucket with non-gentle stuff, the bucket overfills rapidly, starts rusting at its seams. It’s unable to do its job…to simply hold. All the good stuff and the bad.

It’s not easy though, and I’ve stumbled several times. When I arrived back home from my honeymoon month in France, my bucket was looked like it had been through the baggage handlers routine. Dents, nicks and gashes I hadn’t recognised. I was indignant.

How did they get there? Who is responsible for this? That’s MY bucket!

When Mr Metamucil completed his 4th Ironman triathlon, I was so happy, relieved and proud. I was also so exhausted, I could feel each bone in my body and could count each and every fibre keeping me together.

It may sound ridiculous, I wasn’t the one who completed a 3.8km swim, 180km bike ride and a 42km run…but for me the adrenalin, the anticipation and the 4:30am start kicks my AI bucket to kingdom come.

And so I have to remind myself, “Be Gentle…Deborah.”

So I pick up my bucket and try to restore it.

Slowly. Carefully. Daily.

I’m learning the fine art of bucket repair…the tools, the method, the manner in which I need to do it.

And I keep adding to it, because it’s only early days.

Because that’s my bucket and I’m here to carry it.

My Wellness Toolkit

Whether it’s an adrenalin hangover, a virus that has ravaged the bucket or the AI symptoms that have decided to let me know I am not alone, I have a toolkit I refer to that helps me get back on track.

I can’t say whether one practice or treatment is more beneficial than the other, all I know is that this toolkit helps bring back some equilibrium. It is very much trial & error, sometimes I need more of one thing that another, but I am learning to listen to my body and understanding what it is unhappy about.

Learning the Balancing Act

The key is to balance my gut – my mind – and my body

Here’s my Gut Guide:

G1. Graze during the day and into the evening – that means every 2 hours I need the combination of protein, calcium and leaf litter – it keeps my blood sugar levels balanced and blood pressure under control.

G2. Soups – I hated them as a child and still can’t look at kale (despite its superfood reputation) – but if I have homemade chicken stock, broccoli + bacon and carrot + ginger on standby my gut says “thank you”

G3. Stay away from caffeine & sugar – this is an obvious one, but I find it difficult, particularly when I am in a “brain fog.” All I am seeking is a way to get through the fog, unfortunately the soy latte is like using a halogen light rather than LED on a foggy drive down to Wollongong – wastes energy and generates excess heat.

G4. Colour on my plate – natural foods with colour are bursting with all the good stuff – antioxidants, phytochemicals, etc… – if yellow has crept onto my plate or bowl it’s an alarm bell.

Body Guide

B1. Lymphatic massage – I don’t need a blood test to tell me that inflammation and its wrecking ball is at work, I can feel it. I often refer to it as my ‘Nancy Kerrigan’ days. My joints burn and I can account for each of the 26 bones in each foot and 27 bones in each hand.

On these days, lymphatic massage is the only physical relief I can endure. Everything gets moved around, I visualise all those misguided T-cells being redirected, “don’t fire, they’re on our side.”

I swear by Valerie Marshall at Inspiring Wellness, who has years of experience across many modalities.

B2. Chiropractic adjustment – I use chiropractic adjustments when my body feels heavy and “compressed” and as a precursor to a lymphatic massage, I find the “cracks” release and realign the nerves, joints, tissue and muscles. Also having mild scoliosis I find my hips are often out of alignment, so my chiro lines me back up. Paul Hadfield at Gymea Allied Health Centre is my go to.

B3. Sleep – I don’t set the alarm and if I’m tired during the day and a rest break doesn’t help I allow myself permission to sleep, usually no longer than an hour, but if my body needs it, then so be it. Whilst I agree sleep hygiene is important, if it’s another rule you’re imposing, you’re not listening to your body and therefore recovery and achieving wellness becomes even harder.

B4. Limit googling to 30 minute periods. I remember 10 hour days at work where I would jump from research, to synthesising materials, to referencing and back to researching. It was high intensity, brain draining work – it’s an adrenalin hangover waiting to happen. Don’t cure the hangover with the hair of the dog.

B5. Vitamin D, the natural way. The amounts you can absorb through food are negligible, it’s the old fashioned way that helps. Despite the 45 stairs I need to take to get outside, its then less than 20 metres to the backyard and the sunlight.

Movement Guide

I’ve deliberately not called this exercise, because for many (including me) exercise conjures up great images of both physical and mental effort and energy – the two things I may not have at this point.

So I try to focus on deliberate and mindful movement, because somehow it seems more tolerable and doesn’t send me into the fear mode that I’ll overdo it and therefore feel worse. The team at Peak Health have helped rebuild my bucket more than once, and I often credit Brent Collier, the exercise physiologist at Peak and fellow CFS thriver, with an amazing ability to harness my Type A traits for good (and recovery).

E1. Re-focus on Core – This isn’t solely about holding a plank, but rather acknowledging that when the AI bucket has been kicked so is my posture. Further exacerbating the fatigue as my body slouches.

Less oxygen in, less oxygen circulated, less energy created. So I lay down and focus, brace my core and hold for 3 counts. Repeat 5 times. Done.

I then find myself standing more upright. More oxygen in, more oxygen circulated, more energy created. Mission Accomplished

E2. Start at 5 mins, and (slowly) build – That’s all I (try to) ask of myself. Sounds easy, but often is not. In my head, it often takes more effort to get ready whether it’s a dip in the ocean or a walk around the block, but I know this is the difference between managing the pain and fatigue or allowing it to overcome me.

E3. Heart Rate Monitor – This allows me to check whether my perceived exertion is within range of my actual exertion. Basically how hard is my heart working… 65%, 75% or more? I became very adept and not listening to my body to the point that I had a completely skewed my internal recognition system. A HRM doesn’t lie, so this is an indispensable tool.

In an upcoming post I’ll talk more about how targeted movement allowed me to rebuild the bucket and take it to France on a cycling trip. It’s not the silver bullet, but it’s another tool, and I don’t think you can have too many of them.

Mind Guide

M1. Meditation – I wish I could say I can find the peace and tranquility, but I still struggle, and at times it make me more frustrated and therefore my inflamed or irritated internal state gets worse. So I aim for 5 minutes and I use Andrew Weil’s 4-7-8 or Relaxing breath.

M2. Mindfulness – I find this easiest on walks with Franki or at the end of the day when Lee and I have dinner. No distraction, just the moment to chat or to experience and savour the moment.

I find I still revert to old habits and try to keep busy and/or distract myself. These are hard habits to break.

But for me, it has to be a conscious choice, almost a “talk myself into it” discipline.

To stop and remind myself “this too shall pass.”

The Power of Encouragement

In 1986, there were three things I loved – my 4th grade teacher, Mrs Cronin and her creative writing class, Edward Packard’s Choose Your Own Adventure books and Young Talent Time.

As a sprightly 9 year old, I loved the creative freedom Mrs Cronin provided in her class. I have no idea how many times a week we had creative writing. Nor do I remember how long the class lasted for.

But what I do remember is her brightly coloured clip-on parrot earrings and her endless encouragement and enthusiasm for my first feature length story about important things in a 9 year-olds life – aliens.

I remember the extra time she spent with me. I remember how she encouraged me to use more full stops and less of the conjunctive adverb “then.”

She was the reason I wanted to become a journalist and those early words of encouragement provided focus right up until my second year of a Bachelor in Communications, when I realised I couldn’t write whatever I wanted. It would always be up to the “editor’s discretion”.

Fast forward twenty five years and my career trajectory couldn’t be further from the fertile creative training ground I was provided. There were also no ballet or jazz eisteddfods, I don’t think the bump & grind after several vodka & oranges at 2am count.

There was no creative writing, my distraught scribbles into a diary were never the best example of grammar, and in fact I was being crafted into a rather effective policy and project manager. The power of plain English. With no room for fluff.

But when the leaky bucket fell apart, I started to reassess what I was doing and had to determine what I actually enjoyed; my memories of Mrs Cronin came flooding.

Discovery & Awe

It was a time in my life where I thought I could do anything. When I was encouraged to try anything. Where a mistake meant I could pull out the rubber and fix it. Where I has time to sharpen the HB pencil and think about the next twist in my plot. I would have done anything for Mrs Cronin.

Thankfully the emergence of social media and blogging has reignited the spark. Anyone can write, everyone has a story, even if you’re not that confident.

For me, the opportunity to write provides healing and joy.

I feel like I’m nine again, without a care in the world.

Looking back I wonder whatever happened to that creative streak. The joy from dancing in sequins, fishnet stockings and $2 Kmart makeup caked up. The hours I spent pouring through each Choose Your Own Adventure book from cover to cover, with all the options explored.

Did it disappear? Was it simply a phase? Had I found more something I was better at? Or did the encouragement stop?

The real question is, does it matter?

I’ve spent so long trying to answer questions – reflect, reject, regurgitate. There are many questions that remain unanswered, particularly when trying to manage the auto-immune rollercoaster, and valiantly searching for answers doesn’t always provide reassurance or peace. It really doesn’t make me feel any better or more satisfied.

But this is what I do know. The power of encouragement.

Whether you’re nine or forty-nine. Whether you’re the giver or the recipient.

The power of self-belief and self-confidence. And the pleasure of reconnecting with joy.

In 1986, Mrs Cronin provided a spark that although temporarily shelved, has been reignited. She taught me that to be good at anything it takes time, trial and a good rubber.

And I’m also pretty sure she let me look over her shoulder to win the Year 4 spelling bee champion, when I was on a tie-breaker. Encouragement of a different sort.

So thank you Mrs Cronin, and thank you to all that provide encouragement, that light a spark. Even if you don’t realise it.

Because whether you’re teaching someone their first letters of an alphabet, or cheering for your loved ones on the sidelines. Your gift is tremendously powerful and rarely forgotten.

The kindest Graffiti
The kindest graffiti @ Ironmanoz,                Port Macquarie

So tell me, who was the first who encouraged you to believe?