My Diabetes Inklings

Social Distancing with Diabetes

How the world has changed so quickly within a few days/weeks/months where we’re suddenly living out the Contagion movie. I didn’t think it would take me so long to adjust to isolation life; I was always keen on the idea of working from home anyway. It wasn’t until I saw a quote on twitter that nicely described my struggle:

Every time someone asks how I’m going, it’s impossible to be anything but positive. There are so many things I am grateful for and others in worse conditions that I really can’t complain about anything. It almost feels a little bit like survivor’s guilt. We’ve got a roof over our heads, food to eat, regular income, toilet paper to wipe our bums and the Internet to connect with friends and family.

At the same time, there’s no denying the tinge of stress and uncertainty that COVID19 has brought to our home. I am worried that when there won’t be insulin or my usual diabetes supplies when I go to the pharmacy (another reason not to panic buy!). I am scared of contracting the virus cos I know diabetes and viruses never play nice together. I am exhausted from the impact of stress sending my blood sugars into its own theme park with wild roller coasters.

You’d think that being in a routine at home would help with diabetes management. Yet I forget that stress likes to create surprises in blood glucose profiles. The only thing I’ve really enjoyed was the shift to using telehealth for my diabetes appointments, which has saved me so much time travelling and sitting in waiting rooms!

Even though everything is physically fine, my mental health has certainly been impacted. There are days where I am super productive and other days where I just can’t. Thankfully we’re still able to go for walks and I’m trying to incorporate this where I have a small break from work to get some sunshine in. I’ve made yoga a daily must-do to get my body moving and my boxing trainer has been running free online sessions everyday.

Isolation has really forced me to focus on myself more than ever. Now is as good of a time to remember that everyone processes stress differently. If you need to take a break from social media, do it. If you haven’t got the time to learn a new hobby or cook a scrumptious banquet everyday, don’t sweat it. I am, though, expecting a whole lot of handmade gifts and feasts in the near future from my crafty and foodie friends!

I’m surviving the days by counting my blessings, and prioritising things that really matter in my life. Treasure the things that make you smile and find things that make you belly laugh. The COVID19 pandemic is madness but it has also gifted us a rare moment of stillness in the world among its chaos.

My Diabetes Inklings

The Guilt of Privilege

I have access to subsidised (aka free) CGM and I feel guilty as heck for it. As my diabetes educator signed the forms, the wave of emotions hit me. I was excited, happy, relieved, angry and frustrated. It felt incredibly unfair that I was accessing CGM without cost while others were scraping every dollar to afford these.

CGM is precious. I remember trialing it when I started on my first insulin pump about six years ago now. It was life changing to be able to see what happened in between the finger pricks, to get alerts and see glucose level trends. I was armed with so much data that exercise didn’t seem so daunting anymore and the anxiety around hypos and highs were greatly reduced as well.

While the technology is awesome, the price wasn’t. Currently a Dexcom G5 transmitter is about $500 for three months, each sensor costs about $80 and lasts seven days. The Freestyle Libre sensor is $92.50 plus postage (don’t even get me started on having to pay for postage…). I’m not sure how much Medtronic sensors cost but I’d assume it’s comparable and the last time I checked, they were slightly more affordable on a subscription plan.

Of course, the diabetes community has come up with workarounds to get more bang for your buck with rebatteried CGM transmitters and extending sensors for as long as we can. For us, the benefit of having that continuous data outweighs the risk of infection that comes with extending the sensor.

While we make do with what we’ve got, many people are working in the background to to get CGM and Flash subsidy for everyone with type 1 diabetes (and hopefully for other people with diabetes who will benefit from it too down the track). We’ve come a long way since CGM first came to Australia and there’s still a long way to go.

Thank you to all the organisations and people behind the scenes who have made it possible for me to access subsidised CGM. I promise to pay it forward by donating expired transmitters to be rebatteried and doing what I can to keep advocating to achieve access for people with diabetes who will benefit from it. Out of pure habit I’m still extending my sensors for as long as possible (although the best I’ve done so far is just under three weeks). It’s the least I can do to ease this guilt and to make the most of what I am lucky to have.

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My Diabetes Inklings

Speak Up, Be Heard

Recently I found out that a high school friend passed away from cancer. His diagnosis took over six months as the first doctor he saw said it was nothing. His mum persuaded him to get a second opinion. He eventually went but argued that “they show no interest in me”. Twenty-four hours later, he was diagnosed with lung cancer.

Prior to my diabetes diagnosis, I had a sinus infection that went on for six months and it worried me. I had never been this sick for so long and I wanted to get answers. I consider myself incredibly lucky to have had a GP who was patient with me and listened. Neither one of us expected a diabetes diagnosis after further tests were run.

These experiences highlight the unpredictability of our health. Neither my friend nor myself fitted the stereotypical profile for our diagnosed conditions. We tend to go into the doctors expected to be told “it’s nothing” or “it’ll go away”. But sometimes that’s not enough. As patients, we need to do better at sticking to our guns when we feel that something is not right. And as healthcare professionals, we need to do better at making our patients feel heard.

We are our own experts when it comes to our body. If something doesn’t feel right, don’t brush it off. That’s not to say we should become hypochondriacs. But if something is concerning you or impacting your day to day life, get it checked out. If someone actually says “hey, you should get that checked out”, listen to them!

It’s better to run the tests and receive the all clear than to let the issue bubble along until it’s too late. And if you don’t feel listened to in the first instance, get a second opinion. Early detection or diagnosis often leads to more treatment or management options. Make sure that your doctor captures your concerns during your visit as you never know when that piece of the puzzle might fall in to place. 

My endo dictates his clinical notes aloud while I’m in the room to ensure it’s accurate and that I know what is being sent to other members in my diabetes care team. It can be a bit awkward to hear but I respect and appreciate the honesty and transparency this process brings. 

Now I have the habit of seeing what health professionals write in their clinical notes and I never hesitate to correct them if needed. Medical notes are legal documents, which is why it is crucial that what is documented is accurate. However, this does comes with confidence. Prior to my diabetes diagnosis, I would’ve never dared to do this nor would I know what to look out for. It has taken me years and plenty of bad experiences to get to this point.

Being an active participant in my own healthcare has become another one of those life skills you pick up living with chronic condition over time. Unfortunately, time is a luxury not everyone has. Because now we will never know, had my friend gotten that x-ray earlier, would he still be alive now, about to celebrate his 30th birthday?