All posts by deborahm

Ready, Set (Breathe) &…Go

Daring greatly, To Feel, , ,

When I first decided to publish this blog, I took a friend’s advice, “Just hit publish” she said, “ Who knows if anyone will read it anyway?”

I had purchased the domain name almost 12 months earlier. I had no doubt. Emotionally constipated. Who hoo that’s me…it’s in the stars!

The title was never in doubt, it was usually my opening line at a speed dating event and was often received with a chuckle, and I’m sure some scepticism. But I prided myself in being honest…you won’t get dolphin tattoos and hand holding from me. I’m just not built that way. That warm and fuzzy stuff makes me uncomfortable. And of course, there’s a story there to share…just not quite now.

I had written (posts), generally in fits of inspiration (and desperation). Several at one time, and then nothing for weeks. The writing came easily to me, I was 9 again, and loving it.

For 12 months it became my private place to share (with no one other than myself) my frustration and ramblings, the ridiculous and the comforting. And surprisingly it provided a place to find some peace and equilibrium;

because when it all stays in my head, the incessant chatter is overwhelming and nothing makes sense

Puddles & Play

I had no plan on my approach. Whether to be completely objective sharing the latest in scientific research into Chronic Fatigue, Fibromyalgia or Lupus, or whether I would be uber-positive and annoyingly optimistic (unlike me) trying to convince myself or others that life with a chronic disease can be rich and fulfilling. I’m still struggling with that one.

I didn’t plan to share my deepest and darkest days, because I was (and still am) afraid if I actually admit to it, and feel the pain in its fullest and most terrifying grandeur, that it will envelop me and I’m afraid I won’t be able to find a way to get up and into enough air, let alone find the strength to get out of it.

I just planned on being…I don’t know…just plain old honest. And ultimately, much to my surprise and dismay, vulnerable.

An emotion I had been keeping well-guarded for most of my life.

And in the moments of doubt, sprinkled with troll-associated terror, I kept reminding myself “who knows if anyone will read it anyway?”

So I hit publish. Privately. Quietly. Sharing only with those closest to me. Scared to death that they would think it was boring, unengaging or even worse “I’ve heard this all before.”

And out they go. One at a time. As the tightness in my throat clenches hard and the pain in my chest rises until I feel like I’m going to choke or hurl; every time I hit publish.

And then it comes. Like clockwork.

Texts. Phone Calls. Tears.

Emails.  Likes. Joy.

Comments. Engagement. Relief.

From people I know and most surprisingly from those I don’t.

It’s a rollercoaster of feelings I don’t quite understand. A mix of terror and sublime bliss. Trepidation and exultation. And it all happens out there, within moments, completely out of my control.

My writing is a little more stable now. There are no fits of inspiration, I notice a story in almost every interaction I have. It’s just the courage to jump on that rollercoaster which still terrifies me.

And I realise that this funny little thing called life is rather persistent, forever trying to remind me to slow down, to observe, to share and to enjoy.

So as I take my morning walk with Franki, as I sit at yet another doctor’s office, and as I struggle with a downward dog, some days more than others, I remind myself to step back. Store the memory. Feel the anxiety and the fear.

Let it marinate, but don’t let it stew.

And when I’m ready, bring it back and toss it around like a good Greek salad and write. And in time, find the courage to publish.

So thank you for indulging me and sharing in my exploration.

Without your likes, your comments, your high-fives…my search for a daily scoop of fibre, comes much easier than I ever thought possible.

Advertisement

Be Gentle

Daring greatly, , , , , ,

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

Leaky Bucket, , , ,

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?

Leaky Bucket, , ,

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.

The Power of Encouragement

Daring greatly, , , ,

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?