Flying Blind

When I was little I was convinced a monster lived under my bed. Every night just after brushing my teeth and getting into my P.J’s I’d make a bee line for the bed and hide under the covers. Spending the night terrified that if I moved or breathed the monster would get me. Even though at night I was frightened for my life, I woke up every morning refreshed and unafraid. Somehow, I knew the monster could never survive the light of day.

After years of yoga, personal reflection, and trauma work I now know why I was so afraid. Having lost my mother suddenly at the age of 10, I projected the shock and fear into an external threat. As an adult and the author of my thoughts, I understand that I can only ever be the source of anything I project. The monster wasn’t separate to me, it was a part of my psyche supporting me to make sense of the incomprehensible. Mothers aren’t supposed to die and leave their 10 year old daughters.

Being with fear and uncertainty is something I deal with every day as someone who lives with type 1 diabetes. I spend my whole day managing risk. Most of the time I get it right. But every now and then I don’t.

unrecognizable mother holding hands with daughter

To describe the onset of a mild low is easy. There’s the feeling of ants crawling around my middle. The rushing to the loo, the increased heart rate. A kind of hyper vigilance and anger all at the same time.  But when the low is severe? With no warning? That’s something that defies words.

Last night was just like any other. We’d gone for our afternoon walk and I decided to water the plants. I’d kept my CGM in my coat pocket, so I could keep an eye on my levels. Often around sunset I dip low as my long acting insulin wears off. As my numbers were more than steady I decided to do some weed pulling. No more than 10 minutes, knowing that any kind of gardening induces a low. Still, after checking my blood sugar I was in the clear. A nice steady 5.0 mmol.

I came inside, prepared my dinner and then decided to have a shower. I took my long acting shot for the evening ( I split my dose), checked my level, it was 5.3 and hopped in the shower. I checked again when I got out and due to my CGM getting damp it read 5.6 with an upward arrow. Great, I thought to myself, I’ll check again in five minutes when the heat from the shower dissipates. On my mat, I started my evening practice. After a few poses I felt a strange tingling around my middle. Knowing that that is one of my ‘tells’ for a low, I checked my CGM, it said 5.4… I  decided to cross check with my glucometer just in case.

Thank GOD I did! It said 2.9!

I freaked, checked another finger, while at the same time trying to wrack my brain as to where my glucose tabs were. Once the other finger came back with the same number I ran upstairs, realised they were downstairs and ran to them and shoved four tabs in my mouth at once. My heart rate was through the roof, I had no idea if 12 carbs was enough. Everything went into soft focus. All I could do was feel my heart rate pounding, the sweat running from every pore, the thoughts in my mind jumbling with no coherence. While John went upstairs to get his phone (in case he had to call the ambulance) I ate another glucose tab thinking 15 carbs would be better than 12. Then suggested we get the hypo kit out of the fridge, unused, not even looked at since purchase.

I tried to read the instructions to John. “What is this for? “He asks, “Just in case I pass out.” I am trying to read the instructions and stuck on number 2, which says, slowly inject the water into the vial. I’m thinking but where is the water? Do we have to get the water from the tap and put it in? John is saying there are pictures of what to do on the inside lid of the kit. I don’t understand the pictures, I don’t understand the instructions, I’m sweating profusely now. I check my CGM it’s a straight down arrow

NOT GOOD! I down another three glucose tabs so that’s 15 + 9= OMG don’t even know how much I took. Was it too much? Not enough? I can’t set my timer to make sure its been 15 minutes since I took the tabs. I can’t do anything but try and explain that we only need the hypo kit if I am unconscious. “Whatever you do John, don’t put the needle in the vial we cant waste the kit.”

We hang in the balance, check my blood sugar with the meter which is much more reliable than my CGM at this point and see it’s the same number as it was five minutes ago. Not going down. Phew, but not going up.

I start to really feel the low now. I feel faint, sick to my stomach, weird as F…ck.

And then inch by inch it creeps up. John puts away the hypo kit. I sit in a stupor. Even though my blood sugar is back up past 4mmol (that’s a normal range) my brain is not online. It’s worse than the feeling after a panic attack. I’m literally numb. All the while my only thought is why?

Why did I drop in 20 minutes from 5.4 to 2.9? I knew it had to be something to do with the long acting Insulin, somehow it had absorbed too quickly. Maybe the shower and the heat? But how much was absorbed and how long would it last. Was there a danger of going low again? This had happened just before dinner and I had to inject meal time insulin for that. Would they interact? Was eating and injecting going to endanger me again? And why didn’t I know more about this? Where are the formulas and strategies for this unexpected scenario? Why can’t our HCP help us to be prepared for these kinds of situations? They send us home with the basics. Eat, inject, treat a low with 15 carbs. That’s it? Talk about flying blind.

Once I could properly operate machinery again I sent a message to some of my allies in the DOC (diabetes online community). Their response was so immediate that I cried.

One friend mentioned that I should split my meal time dose just to be safe. Take a unit at the start of the meal and maybe another one two hours later. Another friend assured me that at 2.6 mmol 24 carbs worth of glucose tabs was the right amount to treat the low and my levels would soon stabilise. She also mentioned taking less insulin for the meal and watching every 30 minutes to see what happens. If I saw my levels spiking, then that was a sign to take more insulin. After a ton of messages back and forth, she admitted she couldn’t ‘tell’ me what to do and that I would have to trust my intuition and decide. Everybody reacts differently to every food.  She reminded me that I have diabetes, it’s okay to have high levels, better to be high than low.

I decided to dose 15 minutes after the meal when I saw the upward trend and took ½ a unit less than normal. My blood sugar spiked. I survived.

It’s morning now and the sun is shining. The monster firmly back in its cage. I am in awe of the women I reached out to and their instant support. I know they have had soul crushing lows and impossible highs and just like me make it through. Without those who have gone before us, how would we know the path to tread? How would we tame the monsters under the bed?

If there is one lesson, this low has taught me it’s to reach out and keep reaching out. Ask for help. Know you are not alone. Yes, ultimately, we have to make our own decisions when it comes to how to manage our diabetes. But for every potential choice there is a person with lived experience out there willing to support you, you need only ask.  

With great respect…

rachel

I can’t eat that because…

I never considered myself a foodie until I changed my diet.  Now, thoughts about vegan pizza don’t seem so far-fetched. Nor does any kind of pasta or polenta adventure. Every day I incorporate more foods into my diet and every day I get a handle on how my body responds.

My biggest insight so far is that what I eat isn’t the problem, it is my relationship to food that I need to unpack.

My whole life ‘food’ has been a bumpy ride.

I’ve shared before that I was my own food police as a dancer. Watching my weight was critical to how I performed. I can remember being adamant that 2 lettuce leaves were plenty for lunch. I was never anorexic or bulimic, but I definitely had a pattern of starving myself followed by enjoying butter and sugar sandwiches. Luckily this pattern of behaviour didn’t last and by the time I was in my 20’s I had visited a sensible naturopath who explained to me the importance of eating a well-balanced diet.

Yoga, meditation, breathwork and a simple vegetarian diet were my mainstay for many years. I didn’t have the best digestion, but I certainly enjoyed a wide variety of foods and I cherished growing and eating home grown vegetables and trying out new recipes.

Then things got worse.

When I was diagnosed with diabetes there wasn’t much information about the connection between type 1 diabetes and the microbiome. My endo insisted I start eating meat, my GP suggested a keto diet. When I complained that my tummy was burning, or that I was constantly moving between diarrhoea and constipation, I was told it was parasites, leaky gut, candida overgrowth, IBS, gluten intolerance and so many more ailments.

Many alternative health practitioners later, I had narrowed the corridor of foods so much that I was literally starving myself.

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My mind was like a fortress. If anyone contested what I was doing. I.e. restricting my diet, I would defend myself by saying, “I can’t eat that because I’ll have to take too much insulin. I have bad digestion because of diabetes. I don’t want to go low! I have perfect control so what’s the problem?”

Now, after radically changing my diet (I’m doing a whole food plant-based vegan diet with up to 250 carbs a day) and learning how diet, exercise and insulin really work, I can see that I was in denial about my disordered eating. The package may have been different, but it was just as detrimental as those 2 lettuce leaf dancing days.

Coming out of a pattern of disordered eating is not easy. It’s easier to stress about food. Worrying about what I eat was giving me some semblance of control. Releasing the reigns has meant I’ve had to face how scary it is to try new foods, bigger doses of insulin and to trust my body.

My Diabetes Coach and I have been meeting about once a month to try and fine tune how my body responds to different types of carbs. In one of our most recent sessions he encouraged me to be more intuitive with how I dosed. If I feel like having more of a starchy meal, like with sourdough or sweet potato, or oats. Why not pre-bolus, split the dose or take 20% more insulin? I could even take less insulin on more physical days and switch up my dose of long acting insulin.

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At first his suggestions felt scary. If I could just eat the same meals every day I could get the same results, right? Trying different combinations feels way scarier. Like flying a plane solo.

This is what letting go is all about, letting go of should’s, expectations, assumptions, feelings of inadequacy and doubt. All things that led to my disordered eating in the first place. ‘I should be able to control my diabetes. I won’t be able to unless I do such and such. Even if I try I’ll fail.’

I am finally understanding that knowledge is power. When we know how to resolve a problem and have the right tools, anything is possible.

I wish my endo and health team had told me that diabetes is a subject that requires in depth study.  Instead I’ve gone through years of ups and downs to discover that:

  1. Managing overall health is tied to individual constitution; the way I learn and my emotional mental behaviours and patterns.
  2. Seventy percent of the immune system is in the gut. What I eat, when I eat, how I eat and my relationship with food affects EVERYTHING.
  3. Stress reducing activities like yoga, meditation and breath work increase my sensitivity to insulin, improve my mood and mindset.

Screen Shot 2020-08-31 at 1.36.07 PMObviously, nothing is perfect, and living with diabetes is never going to be a walk in the park, but if I knew then what I know now. O. M. G. I could have saved myself so much headache, heartache, denial and self-harm.

Recently friends with diabetes have been contacting me and asking me how I made the transition from a low carb restrictive diet to a high carb low fat diet. We’ve had some big heart to hearts in our chats.  I know first-hand how hard it is to wrap your head around eating 250 carbs a day when you’ve spent years thinking low carb was the only way to get decent management.

The main thing I share is how scared I was, how I definitely needed hand holding and how I haven’t looked back. Having the opportunity to share my experience around food has been a source of healing too. It hasn’t just healed how I approach living with diabetes its transformed how I relate to myself.

If you’d like to learn more about how to transition to a whole food plant based vegan diet with support, check out my diabetes coach,  Drew Harrisberg and the books Mastering Diabetes and Fiber Fueled.

with great respect….

rachel

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