Preparation, practicality and cautious expectation

Yesterday was the start of my holiday. Piercing blue sky, slight breeze, the swell of the ocean and a day planned walking through the forest to a remote and pristine river. I was excited and frickin scared. I packed my backpack to overflowing with glucose tabs, insulin, lunch, phone fully charged, an extra and accurate blood testing meter and rescue remedy. My husband would have to carry my bathing suit, sarong and water bottle.

I love walking and I do it every day. 20 minutes hits the spot and lowers my levels just enough so that I cruise into dinner steady and in range. If I go beyond my 20 minute cruise I often end up high. Seems like the liver kicks in and releases more glycogen aka sugar into the blood stream.

Honestly, I am not a fan of long hikes. The last time I did one was before I started short acting insulin in 2018. That’s why I was scared. How would it work to walk for more than 3 hours, on a sunny hot day? Would my insulin stay cool? How would I dose for lunch when I knew I’d have to hike up a hill after our planned picnic at the river mouth. So many questions, so many unknowns. While my friends and husband were excited to walk I felt like I was jumping off a cliff.

As much as I use yoga to keep me balanced, it’s these normal everyday things that get me. I can’t take a vacation from diabetes. EVER!

In spite of my trepidation we went. The first hour was awesome. The forest was alive with wild flowers, trees dripping in moss, singing birds and dappled sunlight. I felt connected and alive. Our forest is 50 million years old.

IMG_0491By the end of the 2nd hour we had reached the lookout. My blood sugar was a steady 6.0 mmol. I started the walk with a 1/4 of an apple and didn’t take any insulin to cover.  Things were going well. We had to cross the river to get to our picnic spot. On went the bathing suit. With my backpack and shoes held above my waist we waded across. The water was brrr cold. Here in Africa the water is clean and crisp, full of prana, amazing!

As everyone else munched on snacks I pulled out my prepared lunch, enjoying every bite, it was crunch time. Would my usual two units be best considering that in an hour I’d  be climbing a steep hill followed by an even steeper descent? I opted for just under 2 units and an extra 1/4 of an apple. Then threw myself in the river, cold refreshing water. So good!

I started the next part of the walk around 5.7 mmol. It took 30 minutes to hit the dreaded low. 3.9 mmol with a downward pointing arrow. I took two and half glucose tabs, while gazing at the most beautiful view in the world. We waited for 15 long drawn out minutes.  My friends asked me what would happen if it didn’t come up. I’d take more tabs and wait some more. Waiting is the worst. On the plus side I was so tired from the walk I couldn’t feel the low or my fear. I was peaceful, relaxed and grateful. Grateful for my husbands arm around me, the patience of my friends, and the beauty of our surroundings. My levels returned to normal and we completed the walk. Topping it off with a dip in the wild ocean. It couldn’t have been a better day.

IMG_0505Back at home my husband reminded me, holidays are all about dropping the every day stresses. Time to take a break from normality, hang out with friends, talk about whatever, spend time in nature. I get it, I used to have that freedom, even took it for granted. Since diagnosis I’m a work in progress. I take each day as it comes. I work with what I have without expectation. Rather than define my ‘vacation’ by what everyone else does. I do relaxing my way.

Preparation, practicality and cautious expectation.

Have a wonderful holiday season

with great respect…

rachel

 

 

A joy to be alive

I can’t believe its the last day of Diabetes Awareness Month. When I set myself the task of writing a post a day it felt daunting. How was I going to come up with something to say every single day about diabetes? Turns out it’s not that hard. When you live with diabetes 24/7 there’s always something to say!

That’s the thing about the passage of time, it’s a human construct. We’ve decided based on a calendar we’ve created as to what time, day and month it is. Have you ever wondered what time it is on the sun? Timeless.

Living with diabetes is like that. It never ends. I’d like to think there’s a cure around the corner, but I’m realistic. For now the management tools we have available are enough. I’ve added yoga, ayurveda and a primarily plant based whole food, organic diet. I use every peer support group available and do my best to give back to the community. That’s the cool thing about living with type 1 diabetes I’m not alone. In every country around the world I know people just like me thriving.

At diagnosis I isolated myself and lived with guilt and shame until it became imperative that I educate myself about my condition. I still can’t believe it took me six years to do that. It shows how much the internet and knowledge around the condition have shifted in the last decade. A very good sign.

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With such positive changes in the way the general public and the diabetes community perceive diabetes I can only hope and pray that the situation around insulin pricing also changes for the better. No one should have to pay for their life.

Living with diabetes certainly isn’t boring, it’s a never ending kaleidoscope of unpredictability that put’s me on the razors edge. But I’m up for the task. It’s given me a strength I never knew I had, a conviction to make a difference and a willingness to let go of my ideas of how I think things should be.

Living with a chronic illness is more than just rising above a condition. It’s about living life to the fullest without preconceived notions, other people’s standards or idealised projections.

It’s a joy to be alive.

With great respect…

rachel

Sick with Diabetes

Usually I can fly 30,000 miles without a hitch but not this time. I’ve been hit by some sort of bug. Could be an allergy, could be my body trying to eliminate all the toxicity from breathing in smoke from the Australian bushfires or could be I actually picked up a bug. One thing I’ve consistently noticed about myself since diagnosis is that I hardly ever get sick. I know others have mentioned this too. It’s like diabetes gives us some sort of immune super power, where we are chronically ill but never sick. Weird!

I try to avoid exposure to bugs as much as I can. It can make me antisocial.  I won’t go to hangout with someone when they have the flu. Getting sick can wreak havoc on blood sugars. Fighting off a bug can raise levels, and having to take extra herbs or medications can lower levels. Even something supportive like Vitamin C can affect the accuracy of the readings on a continuous glucose monitor. Basically a cold or flu is a minefield I’d rather avoid.

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When I travel I wear a mask. It’s not pretty and I’m often the only one on the plane who wears one, but it seems to help. If nothing else it gives me a feeling of security.  Insecurity rears its ugly head when I am tired, sick and feeling irrational. Same as one of those out of control hypo moments. Brain offline, body shaking, must get glucose now kind of stuff.

Obviously this time the mask was no match for the super bug. Now I’m in that lovely cycle of watching and waiting. Watching how it progresses from excruciating pain at back of nose, to yellow phlegm, to sore throat, waking up every hour during the night, to loss of  voice. Where to next? No idea… Such fun!

Meanwhile my blood sugar seems to be staying in range for once. Go figureIMG_7258

And it’s a beautiful day in Africa! Nature is in full force in spite of my gluggy head. A little bird is building its nest in the rafters, the lion down the road is roaring, the natural bush around us is filled with cheeps and chirps and there is a presence and stillness in the surrounding forest and mountain scape that can’t really be described.

Yep, it’s definitely annoying to get sick when you live with diabetes, but it’s also a good opportunity to rest, reflect and appreciate one’s health.

Happy Thanksgiving!

See you tomorrow #NDAM #DiabetesAwarenessMonth

with great respect…

rachel

Take that diabetes!

Yesterday, somewhere above Antarctica I celebrated my diaversary, the day I was diagnosed with diabetes.  11 years ago my life took on new meaning. At the time I had no idea why or how. I was stunned, shocked and miserable. I can honestly say that 11 years later I am the happiest I’ve ever been.

My life didn’t take a turn for the better just because of diabetes, at diagnosis my marriage was also undergoing serious strain. Diabetes forced me to get real about what was and wasn’t working in my life. Anything that contributed to stress had to go.

I didn’t heal all at once, rather it happened in stages. I started by changing my diet, eating more whole foods, ditching leftovers, eating more consistently. I added Ayurvedic regimes like daily self massage, herbal tonics, sipping hot water throughout the day and making sure I was heading to bed before 10 pm. I added daily meditation and pranayama to my yoga practice, activities, like flower mandala creation, long morning walks and time to reflect. I had a space in my house where I built an altar. A place to remind myself to be grateful each and every day for life and all its gifts.

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Eventually my marriage ended and my son moved to Melbourne and it was time to sell our family home. That’s when I packed up and moved to Goa. At that point just two years post diagnosis I didn’t know that I was living with type 1 diabetes, I still thought it was type 2, or some sort of mistake. All the health practitioners I went to see insisted it couldn’t be diabetes. So I went to India hoping for respite, or even a cure.

The cure came after I met my husband, John and as I mentioned in a previous post when I discovered the profound teachings of Atma Vidya, Self-Knowledge. Being given the gift of seeing beyond my condition and circumstances as an individual changed my life permanently. It was the turning point for every single moment in my life where I had tried to lay blame. Like the idea that I had brought diabetes on myself, that there was something that I had done wrong to ‘get’ this disease either real or imagined.

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I learned that taking responsibility for every action and reaction isn’t some sort of cosmic destiny, it’s being a grown up. There is no reason ‘why’ I live with diabetes. It is what it is. It’s up to me how I live with it moving forward.

So here I am 11 years later living a life I could only have dreamed of.  So to celebrate this momentous day I say thank you. Thank you to diabetes, for my life.

See you tomorrow #NDAM #DiabetesAwarenessMonth

with great respect…

rachel

The 5 go-to yoga practices that saved my life

For todays post as part of Diabetes Awareness Month I am reposting a segment of an article I wrote for Beyond Type 1 in 2015. Make sure to read more on their site to find out what yoga practices are perfect for Diabetes management

I’ve been practicing Yoga since I was 17; right up until my sudden diagnosis of Type 1 at the age of 42, I was convinced that Yoga made me invincible. After my diagnosis everything changed. Instead of thinking Yoga would stave off the boogieman, I took responsibility and came to terms with the role that Yoga played in my life.

I discovered that Yoga is more than a good stretch. It’s a tree with many branches, each limb a path back to harmony and balance, a way to mitigate stress. Yoga is not a trend, it’s been around for over 5000 years.

The Yoga practices are powerful because they are subtle. The physical aspect is just one component of a multilayered methodology that looks at the flow of energy in the body. Life force and immunity can be cultivated and built through posture, breathing, meditation, the right diet and lifestyle adjustments.

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The word Yoga means, “wholeness, completeness, oneness.” Yoga is not a state. Rather it is the natural state of everything in the creation including ourselves. We are naturally peaceful, happy and whole. It’s only our thoughts about something, and our identification with those thoughts that create a sense of incompletion.

Yoga practice does two things — it pulls us out of the habit of identifying with our thoughts and reminds us of our true nature. When you feel all “zen” after class … it’s not the practice that’s doing it. The practices merely remind you that the peace, stillness and harmony you feel at the end of a practice are your natural state. For me, going deeper with Yoga has enabled me to better manage my relationship to diabetes and manage the stress associated with diabetes.

So what are my five Go-to Yoga practices that put me in the zone each and every day?

Read more  on Beyond Type 1

see you tomorrow…#NDAM #DiabetesAwarenessMonth

with great respect…

rachel

Who am I without my diabetes?

What’s the single most powerful tool from yoga that’s helped me manage my diabetes? Atma Vidya. Atma Vidya is Self-Knowledge. Atma means Self and Vidya means knowledge. What do you think of when you hear these two words put together? Before I was led through these beautiful teachings I thought SELF meant me, my name, my ideas, my beliefs, my broken pancreas. KNOWLEDGE referred to knowing this, getting this.

I was mistaken.

It’s easy to know what I have. I have a name, a job, a relationship. I have thoughts, ideas and beliefs. I have a condition called diabetes. It’s obvious that I know about things that I have. The deeper question is who does the name, job, relationship, idea, disease belong to? Who is that?

I travelled to India and to the heart of the tradition to find out. The tradition I studied with is thousands of years old. Knowledge shared orally in an unbroken lineage. This kind of teaching is not available in your neighbourhood yoga studio. It has only just recently been brought out of orthodoxy and secrecy. It’s a legacy that was reserved for the priests in India. It’s only due to my teacher and his teacher breaking with tradition that enabled my partner John Weddepohl (who teaches this knowledge) to study this methodology for 7 years in India. And lucky me, after meeting John in 2011, also having the privilege of studying with his teacher.

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Going through the teaching on an ashram in India while dealing with diabetes wasn’t easy. I wasn’t on insulin at that stage and was trying to control my levels with diet. With special permission I was able to set up my room with a fridge and cooker. That way I could cook low carb meals and control my levels.

When I started the course, I was nervous about how I would manage. We were told we would have to sit in the teaching hall without leaving for the duration of the lecture. I needed to pee every hour so that freaked me out.

The structure of the course was three 1.5 hour lectures a day, in between we were expected to write out our understanding of the lecture and then hand those notes to our teacher. That way the teacher knew exactly how we were assimilating the teachings. Sitting on a cold marble floor 4.5 hours a day learning about the SELF that wasn’t what I thought it was was confronting.

We spent days dismantling our ideas about everything and I mean every single thing! Imagine being shown without a doubt that the idea that the body is sick, imperfect, unfixable is just that…an idea. Even my thoughts about my ideas where stripped bare. Revealing the ‘I’ thought. This idea I have about myself.

If you’re reading this and thinking…WHAT?

Yep that was me in India too. Until the whole teaching reached its peak.

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You know when you’re trying to untie a knot and how it takes ages to loosen and then finally you find that one part of the string which unravels the knot? That’s what it’s like when you are shown the nature of Self.

Once I understood the nature of Self, my relationship to diabetes completely shifted. I no longer felt burdened by it. Something my teacher emphasised when I met with him privately, was that the body is not our business. We don’t know why it does what it does. Our job is to get out of the way, to see the body as something that is happening in our presence. We can do one of two things hinder or aid the body. If the body requires food, water or sleep it’s up to us to provide that. If the body needs medication, again we must give it what it needs.

I have often shared in my posts that I have diabetes I am not my diabetes. The knowledge I gained in India is the essence of that phrase. I can never be what I have.

Knowing this has kept me sane.

See you tomorrow #NDAM #DiabetesAwarenessMonth

with great respect…

rachel

Staying in range

I’m feeling motivated to get my levels back to where I want them. Not that their not in a good range, its just I know I can do better. At the beginning of the year I worked with the Diabetic Health Journal. It’s a great way to stay accountable, set goals and track patterns. When I was using it my Hba1c went from over 6% to 5.5%. For anyone living with diabetes that’s a perfect number, but really hard to maintain. As much as I know that time in range (keeping my levels between 4-8 mmol) is ideal, there have been a few too many peaks and troughs for my liking. So when I opened the journal and set my goal for the week, I thought I’d try some intermittent fasting.

Intermittent fasting is different to a regular fast. I’m still eating, just spacing out when I eat. The last two days I had my last meal at 7.30 pm and broke the fast with lunch at 1.00 pm. That’s 18 hours between meals. The idea with IF is that it increases insulin sensitivity. It means I assimilate the insulin I am injecting better and blood sugar levels are lower. When I’m really sensitive to insulin I can even reduce the amount of insulin I’m taking which means less low blood sugars events. It’s a win win.

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The only issue for me is I am a huge fan of my avocado and egg breakfast. Day 1 was easy because I distracted myself by going to yoga. Day 2 (today) was harder. I was pretty hungry from about 10.00 am onwards.  I also haven’t seen any concrete results yet. I.e lower levels and increased sensitivity. Patience Rachel Patience…

After I started taking insulin in 2014, I came across a book by Ginger Vieira called Your Diabetes Science Experiment. I read it from cover to cover and learned a lot about the variables that affect diabetes. I learned that even though there are  guidelines and formulas for managing diabetes, it’s not one size fits all. Flexibility and a willingness to experiment are key assets. I’ve been using my yoga practice for years as my personal laboratory to see what my body is capable of. Having diabetes has made things tricky. Sometimes I’m not sure what’s affecting what. Is the sequence or practice supporting what I am doing or is a day of higher or lower levels affecting my practice?

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I feel like I am drawing a giant question mark on a blackboard.

Not having all the answers is something I’ve grown accustomed to.  I was the child that had to be ‘right’ or else. I thrived on competition. That’s why having diabetes has been a bonus in my life. It’s taught me to stop comparing, be kinder to myself and take a gentle approach.  So even though I’ve set a goal for myself to get back to the numbers I feel healthiest at I’m also open to the possibility that where I’m at now is absolutely fine.

See you tomorrow #NDAM #DiabetesAwarenessMonth

with great respect…

rachel

Catching a relax

Today the whole of our shire is blanketed in a smokey haze. The smoke is everywhere. It’s awful and there doesn’t seem to be much respite on the way. Meanwhile life seems to continue as normal…or does it? It’s pretty hard to ignore what’s happening not just on a local but global scale. The word that comes to mind is chaos.

When I think of managing diabetes I also think of the word chaos. Not because I can’t manage it, because overall I do that really well. Rather its the unpredictable nature of diabetes that keeps tripping me up. One day I’m struggling to stay above 4 mmol and the next I can’t get under 9 mmol (in range numbers are between 4-8 mmol). There is no X=Y with diabetes. The pancreas is a strange and elusive animal which doesn’t like stress. And how many times have I been stressed without even knowing I’m stressed? A lot.

The opposite of stress and what the pancreas loves is relaxation. Recently I’ve been catching those moments when I’m relaxed. Noticing a nice deep relaxed breath, a feeling of calm, soft tingles through the body, mind slow and centred. Every time I feel a ‘relax’ coming on I remind myself with a verbal prompt. This is me relaxed, this is what it feels like. Simply acknowledging these moments has helped me to sleep better, digest better, even think better. In fact, Relaxing makes everything better.

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This morning I went to a yoga class with my teacher and friend Louisa Sear. Her classes are hard. Not because there are complicated postures or sequences, more because she asks you to be in the pose with every fibre of your being. She instructs the class to hold the pose, fix the gaze and still the mind. Every pose is taught like this so that by the end of the class there is a sense of being cleansed from the inside out.

The ultimate agitation is our habitual need to identify with the moving miasma of the mind. Thoughts will always be there, including thoughts about diabetes, its up to each one of us as to whether we uptake that thought or not. Thoughts don’t have power. You do!

Understanding the triggers for relaxation and  fixing the gaze on that is a profound way to deal with the constant stress of living with diabetes. Instead of focusing on the tension you’re experiencing, mentally, emotionally or physically try and find somewhere in your body that is at ease. It could even just be your big toe. As soon as your mind goes there all the awareness and focus goes there too. When I do this, within seconds I’ve forgotten what the problem was.

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As I write this I’ve decided to take my own advice. There’s not much I can do about the external factors such as the choking smoke or annoyance with erratic levels. What I can do is take a full breath, be kind to myself and catch a relax.

See you tomorrow #NDAM #DiabetesAwarenessMonth

with great respect…

rachel

The number of tests?

“How many times do you test per day?” this was the question put to me this morning by the Accuchek Guide rep while I was trying to replace my meter. “About twenty,” I replied adding that my blood sugar can tend to be volatile. The rep murmured a sympathetic sound. But I wondered what she really thought.

I know what my Endo thinks. He’s mentioned to me on more than one occasion that I am obsessed with checking.  Do I really need to wake up throughout the night to check? Ummm…YES!  It’s not like I set an alarm or anything, I seem to naturally wake up between 1-3 times per night anyway so why not check?

Overnight lows are the worst. In the days before I had the whole diet thing mastered I’d wake up and have to eat at 2 am. Nothing worse than sitting by myself in the kitchen watching the clock tick over while I wait for my blood sugar to rise.

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And what about in the day? Do I really need to check every hour? I actually don’t check every hour, it depends on whether I’m insulin resistant or have had some sort of injection blunder. Most mornings I can go from breakfast to lunch without even checking. I know my liver is doing its thing, dumping some extra glycogen into my system so it’s rare for me to drop. It’s usually between 12-5 pm that I like to be vigilant. I can never seem to get my lunchtime bolus right, and then there might be some extra exercise thrown in the mix around 4 pm.

Checking vigilantly when you live with Type 1 Diabetes is a make or break situation. Especially if you can’t tell when your low. Its called hypo unawareness, it happens when you have too many lows and the body stops recognising the feeling of being low. Like my horrible hypo two weeks ago, before I knew it I’d dropped to 3.2 mmol. Scary!

It was also after that horrible hypo and sharing it here that some friends encouraged me to use a CGM (continuous glucose monitor). This is something I would love to have but sadly here in Australia there is no subsidy for someone like me. To be eligible for the Dexcom or Medtronic CGM you have to be hypo unaware and admitted to hospital more than once or under the age of 21.

The Freestyle libre flash glucose system is also on offer here, but this has no subsidy at all. I have written before on the blog about how much I love this product. Sleek, discreet and accurate using it has increased my peace of mind and saved my finger tips. I’ve attended  product launches and #dx2Melbourne and can honestly share the company, its ethos and care are palpable. I’ve even lobbied the government to make access affordable for people like me and had a small feature in the Noosa News. In spite of my passion and efforts, I still can’t justify spending $100 every fortnight.

But wait ho… my wonderful parents, after reading my blog, gave me the best early christmas gift ever! A 6 months supply of the freestyle libre. I am touched and grateful.

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Here I am ready to launch. So excited to have some time off from the drudgery of test strips and the ability to see whats actually happening minute by minute with the food I am eating, the insulin I am taking and the sleep I’m sleeping. I’ll probably put one in starting next week so stay tuned…

See you tomorrow #NDAM #DiabetesAwarenessMonth

with great respect…

rachel

The one truth that can’t be faked

I have been obsessed with Twitter since September. Growing up in the United States in a liberal democratic family means I have a keen interest in U.S. politics. The election in 2016 floored me and I have watched the steady decline of ‘the facts’ over the ensuing three years. Not that facts are all they’re cracked up to be. Think about it, as much as science claims a finding to be reality that same theory can also be disproved. Guaranteed change is a constant. That doesn’t mean we shouldn’t aim for justice and liberty and all those other principles though. It pains me to see so much division, hatred and frustration emerging in a country where I was taught that no matter what your circumstances you could achieve the fulfilment of your dreams.

In a new paradigm of ‘alternative facts’ it’s hard to know what to believe, who to trust and what’s real. With all the fake news out there I’d like to note there’s one truth that can’t be faked.

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Diabetes.

Diabetes is a fact. Pancreatic beta cells have tanked. Insulin is required. Life is on a knife’s edge.

I can remember thinking early on after my diagnosis that there must have been a mistake. Maybe the lab messed up my blood tests. I wasn’t the type to have this disease and I was so healthy. A few health care providers even corroborated my theory. Even as late as 2008 some practitioners in Australia didn’t know that out of the 40,000 people diagnosed each year with type 1 diabetes, 50% are adult onset.

Fact: “According to the ADA, 1.25 million Americans have this disorder. This is about 5 percent of all diagnosed cases. The ADA estimates that 40,000 people receive a type 1 diagnosis each year in the United States.” Source: Healthline

Swallowing this fact has been a total reality check. Coming out of denial changed everything.

When it comes to chronic health issues especially ones that are invisible it’s hard for people to validate or understand our struggles. Keep in mind it’s not up to anybody else to verify what we are going through. Empathy and compassion is a powerful ally but in the end when the bugger’s hunkered down and immovable. What to do?

Flush out the tiger!

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It’s only through coming out and spreading awareness that truth can come to light.
It’s why I’ve been posting relentlessly here and all over social media. Plus writing about diabetes is therapeutic. It gives a voice to my inner world.

It’s also how I feel about the state of the union at the moment. Lets get it all out in the open. Let’s get to the bottom of this whole debacle. Let’s see the naked truth.

Once you know the truth about anything you’re free.

See you tomorrow #NDAM #DiabetesAwarenessMonth

with great respect…

rachel