Category Archives: Leaky Bucket

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?”

The Illusion

When given the choice, I always take bad news first, hoping that the good news will wash over and overwhelm the bad.

But what should you do when the bad far outweighs the good? Perhaps I should reconsider my approach?

Let me take you & I, back for a minute.

It’s been six weeks since my last blog, a big no-no in the blogging world. Apparently your readers want to hear what you have to say, and want to hear it often. I’ve always maintained the personal rule, that unless I have something useful, interesting or helpful to say…keep it to yourself.

Those are Dear Diary entries, not reflections I want posted to the world wide web. After all, I am emotionally constipated.

I’m still finding the balance between vulnerability and verbal diarrhoea.

Six weeks ago, I wrote about the testosterone treatment I has started taking in March. After almost two years on the autoimmune medical rollercoaster, I was starting to experience a significant change in my energy levels and re-engaging in activities I had long ceased and at a frequency that had escaped me for just as long. I had developed hope.

After a third set of blood work in early July, my testosterone levels were steadily climbing.  And the doc suggested we kick up the dosage by 50%, just to keep the momentum going. I was accelerating on my continuum of hope.

Brunette & Balloons canstockphoto

Just over a month ago, I celebrated my birthday. And I love birthdays! It’s the only day where you can pat yourself on the back for completing the most harrowing journey ever, the passage down the birth canal (sorry C-section babies!).

After all, at 37 King Henry III of France was assassinated, Michael Hutchence, the lead singer of INXS was found dead in a hotel room in Sydney, Vincent Van Gogh was found with a gunshot to his chest and Lou Gehrig died from an autoimmune disease known as ALS or Motor Neurone Disease.

It is infamous company, but clearly I wasn’t doing so bad.

Within days of my birthday, I received a call from a friend, fresh from her honeymoon. I knew instantly the phone call at 8:30 on a Sunday morning would not be good. She had been nursing her partner and husband of 15 days through motor neurone disease for the past three years.

She called to say that he passed away. On the last day of their honeymoon.

A week later we said our final goodbyes to a gentle man who deserved to enjoy much more of his married life. Of life in general.

I was faced with the strange juxtaposition of watching my girlfriend flanked by her maid of honour and bridesmaid, as she walked down the aisle, except this time to her husband’s casket.

Overwhelmed by the cruel irony of life’s highs and lows, in such a short and swift period….it was heartbreaking.

Three weeks ago, I was woken up by crushing pain in my shoulders, reinforced to me every time I rolled onto either side, as I desperately sought my “sleep” position.

I skipped yoga that week.

The following week, I could no longer ignore the shoulder pain and started taking a painkiller before I went to sleep. I’ve worked out that without restful and rejuvenating sleep, I’m unable to operate and any pain I am experiencing is amplified.

No yoga and no spin class that week.

By early September, it wasn’t the shoulder pain that had sent my neurotransmitters into overdrive, my old friend Tonya Harding was back. Swinging at my knees with that police baton. And laying on my back became increasingly painful as I felt my kneecaps sink into the back of my legs.

I checked in with my chiro wondering whether he could help stabilise my knee. Had I accidentally hyper extended at yoga or twisted it funny? I am 37 after all.

After some examination he noted that my quad muscles were no longer activating as quickly as they should. Nor were they bracing to support my body weight or knees.

I skipped Pilates that week.

Chick in flight_canstockphoto

My continuum of hope, had taken a sharp u-turn, in the wrong direction.

Today, I returned to the endocrinologist to review my testosterone count.

How do you feel, he asked? Should I tell him the truth or should I lie?

“Well, I definitely felt better with the most recent increase in the transdermal cream, but I’ve since rediscovered the joint pain, I struggle to open the jars and use the can opener and the fatigue is creeping back.”

“Well, your testosterone count is finally at the ‘normal’ range. From that perspective we’ve been able to address the hormonal issue. But clearly you have autoimmune pathology presenting.”

Yes, I do.

A few hours later I still feel numb. Like when you find out that the tooth fairy isn’t real or your football team loses in the dying seconds. It’s the realisation that the illusion I held onto, appears to be gone.

So I’ve decided the next time I flip a coin, I’ll always choose bad news first.

Because you see, the good news was that “I’m normal,” so surely it’s only upwards from there?

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.”

To Label or not to Label?

Labels are important. They tell me what should go in the dryer and what shouldn’t. Should tell me whether those Brazil nuts are organic or chemically laden. And also tells me whether xantham gum will make my gluten free banana muffins, fluffy bite sized morsels, or rock hard, teeth chipping chunks.

The label provides direction. It is a navigator. Sometimes even a safety net. It assures me my new snug jumper doesn’t come out Franki-sized.

But I’ve learnt that not all labels are helpful. Sometimes they’re not right.

It’s like the new bargain skirt that assures you you’re a slim fit size 6, when the rest of your wardrobe suggests you may be a comfortable size 12. And sometimes labels require a bit of caution, like these candidates for the Annual Wacky Warning Labels.

Anyone who has ever gone to a doctor with a pounding headache, sore neck and a pocket full of tissues is relieved when the doc confirms “you’ve got a nasty case of the cold going around, but it’s not the flu.”

Great…4 days and I’ll be right. Your loved one makes you chicken soup, you claim the best position, rugged up in front of the TV. And you’ve told the boss you’ll see them next week. Everyone gets it.

Even if the doc delivers a devastating “C” diagnosis, which 1 in 2 Australian men and 1 in 3 Australian women will experience by the time they turn 85, it is usually followed with a plan of reassurance that includes surgery to stop those multiplying cells and to remove the foreign mass followed by rounds of gut wrenching chemotherapy and radiation.

The fear and shock are overwhelming. You’re not quite sure how to tell the boss, let alone you’re loved ones, and you know your life has changed forever, in that single moment. Everyone understands the gravity of the situation. Everyone gets it.

But if you’re told you have Myasthenia Gravis, Motor Neurone, Fibromyalgia or any other of the 80-plus auto immune diseases that have now been diagnosed, the general response from everyone including your friends and sometimes even your GP is “Hmmm” or perhaps, “I’ve heard of it. What is that, again?”

How likely is that kind of diagnosis? Today, over 1.1 million Australians have been diagnosed with an auto immune disease, that’s 1 in 20 and rising. trying to manage their day, their jobs, their symptoms, their feelings and the feelings of those close to them whilst their body is in hyper alert. There are of course, many who are nowhere near diagnosis.

This is where the label isn’t so helpful. In auto immune disease it almost doesn’t matter what permutation has developed, what symptoms are visible or invisible to the naked eye. Because modern medicine doesn’t have an answer and definitely doesn’t have an explanation. From the outside, it’s hard to get.

In some cases there are modern pharmaceutical drugs that help relieve symptoms, but that requires a lot of tests, lots of scans and lots of experimentation. There is no simple, off the shelf approach.

For others, alternative therapies such as acupuncture and naturopathy can provide relief, but this is usually limited by how deep your pockets are. In the first year of my diagnosis, I spent over $15,000 on medical, and more than 40% was out of pocket. I was desperate – for a diagnosis, for a label, for a cure.

The reality is there is no cure. And this reality can be hard to accept.

In the last month I have had my “reviews” with my medical team. They currently consist of a rheumatologist, an immunologist, an endocrinologist, a psychologist, an exercise physiologist and my GP. Each one of them an expert in their field, but none able to treat me holistically – as one body.

The one exception is my naturopath, who is a medically trained nurse, and understands the western medicine model but explores what else my body may be crying out for (but more about this later).

When I met with my immunologist, the leading professor in the field, he asked what symptoms I was experiencing, what my current drug regime was.

He also asked me how my mood was. From any medical professional’s perspective, mood is a key indicator of how a patient is currently managing or struggling with a chronic illness, therefore indicating the likelihood of depression.

I stated I was ok. I wasn’t as crazy as I was when I was first diagnosed, although my symptoms had been unrelenting for the past 9 months. I told him I had learnt to accept that pain was part of my every day, that the “label” didn’t help me and that it simply didn’t matter. I had learnt to accept this and tried to manage each day as it came.

“That’s great to hear” he responded, “that is the hardest part for any patient to accept.

“Ultimately you are the manager and we’re just your advisors”.

I left that appointment a little bamboozled…I’m the manager? But I have no idea what I am dealing with and neither do you!

And when I met with my rheumatologist two weeks later. The same series of questions and answers and then he bluntly stated that it was the end of the road for him…there was simply nothing left in his bag of tricks. He had taken me as far as current medicine could go.

No follow up appointment, no ongoing referral. I felt like I’d been dumped!

So where to now?

Back to the things that I know help me manage my every day – a balanced diet, cut out the sugar, the evening glass of wine, back to some basic exercise, maybe even yoga on the days I don’t feel like my hands have been put through a food processor, and a reminder to myself to be kind.

But the ‘manager/advisor’ comment has been tumbling around in my head for a few weeks now. And with a series of new appointments and specialists coming up I’m wondering.

Advisors eh? Well if that’s the case, “I’d like to speak to my advisors about my current investment portfolio and my expected return.”

Could be an interesting conversation.