My Diabetes Inklings

Checking my Privilege

I have a secret. I feel like a fraud living with diabetes. Healthcare professionals are constantly telling me that my diabetes is too “well-managed”, or that my A1c is reflective of a person without diabetes or that I’m a “boring patient”. Is it even possible to have imposter syndrome when it comes to life with diabetes?

We know that my type of diabetes is slightly different to the norm. Technically classed as type 1b, my diabetes doesn’t seem to be an autoimmune condition and my pancreas is still producing residual amounts of insulin. I believe that this protects me from getting DKA (pure speculation here). It’s the best of a bad situation.

I worry about taking an ableist view of living with diabetes when I talk about it. Everyone’s diabetes and their journeys are different. While some are able to complete ultra marathons in spite of diabetes, others view diabetes as disabling with how disruptive it is to their lives. I am also acutely aware of the privilege I have of being able to access subsidised insulin, insulin pump consumables and CGM (for now) and afford private health insurance (barely) to get an insulin pump. These technology are what helps me to keep my diabetes in check. Without it, I might not be that “boring patient” who is so “well-controlled”, it’s like I don’t have diabetes.

On the other hand, it has taken a long time to get to this point with years of self-advocacy, tears and frustration under my belt. I’ve had healthcare professionals tell me I’m in denial when I’ve tried to advocate for myself and ask questions. I’ve been tangled in red tape simply because our healthcare system allocates funding and resources based on a nice little tick box diagnosis rather than medical needs. I’m just one of the lucky ones who found light at the end of the tunnel through lots of peer support, trial and error, patience and resilience.

But I think I’ve reached the point where my story has been told to death. Now I feel like quietly checking my privilege and stepping aside. There are so many other stories from people with diabetes who are doing amazing things, navigating their own challenges and who are fabulous story tellers. I see my role now as trying to amplify their voices to keep the slow burn of diabetes advocacy going. And in part, it’s been great see this happening organically and connect with fresh faced diabetes advocates within the community. It’s time for me to let go.

My Diabetes Inklings

Peer Support Wins Again

“When your physical environment is in chaos, it leads to a chaotic mindset.” I remember discussing this with my counsellor a few years ago as it has been haunting me these past couple of week. We’ve just moved houses and have been living among boxes as we adjust to a new neighbourhood and different routines. Towards the end of our second week in the new house, it finally broke me a bit.

I had severely underestimated the challenges of moving with a toddler while being pregnant in the Australian summer. We ended up having to make several extra trips between houses to move everything and clean up the old place. Did I mention our new house is a solid 45 minute drive away? On top of this all, my daughter was starting a new childcare and I’m under pressure at work to get my subjects ready in time for the upcoming teaching period.

Despite constant reminders to take things easy, I found myself suppressing a lot of the feelings bubbling away in order to keep moving. I felt like making an appointment with a psychologist would’ve been a good idea. But it also meant having to start the process of finding a new local GP and psychologist, which is a daunting task in itself.

I took to social media to vent a little about everything. Many of my friends who are mums reached out to share their stories and experiences in support. One of them prompted me to check my childcare subsidy settings. I found a massive error in the amount of reported working hours, which would’ve greatly impacted the amount of subsidy we would be eligible for.

Rectifying that mistake meant that we were able to utilise an extra day of childcare and not stress out so much about asking family to help out while they’re all working too. Another friend reminded me that our kids are only this age for so long and that we don’t have to be chasing our career all the time. Hearing that almost gave me permission to slow down a bit. It also reminded me to stop chasing perfection.

Just those few little mind shifts and chatting to friends when I felt my panic and anxiety building made a world of a difference. I forced myself to step away from work as much as I could this weekend and focus on the social/family events that I was looking forward to. For the first time in a while, I’m feeling slightly more recharged for the work week, settled and calm.

Peer support is such a powerful tool when professional networks aren’t readily available or if a person hasn’t got the brainspace to deal with navigating the healthcare system. Never underestimate the impact of listening to someone else and sharing your story with them. You never know whether that story will make them sigh with relief and say “I’m glad I’m not the only one going through this”.

Ever tried untangling headphones or necklaces when you’re frustrated and in a rush? It’s near impossible. These are times when you need to stop, take a big breath and slow down more than ever.
My Diabetes Inklings

2022: Diabetes, Pregnancy and Covid

Well, this was not how I had expected to kick off the new year. We had to take an unexpected extra week off from work and an even longer break from childcare thanks to COVID. On top of managing a sick household, there’s little ‘ol me here growing a little human in a broken body with a dodgy pancreas.

First it was the gastro that started on my daughter’s first birthday. Then it was conjunctivitis and a cold from her childcare. All of these somehow skipped her and went straight to me. One weekend my husband woke up with muscle aches, a cracking headache, immense sinus pressure and loss of taste and smell. A rapid antigen test confirmed it was indeed COVID.

Not long after, my daughter and I started developing symptoms. She had a fever, which resolved after a few days and a chesty cough that hung around. I had a dry cough, congestion, headache and lost my smell and taste for a couple of days (yay to not being to smell during those pooey nappy changes!).

A PCR test confirmed that the whole family had covid and we were sent into isolation for seven days. Stupidly I thought I could try and work through this time since my husband was home. It wasn’t until we were 2 hours into waiting at the drive through line for a PCR test panicking that I wasn’t going to make a meeting that I decided work could wait.

I think I’ve been anxious about taking extra time off work because I’ve just returned from maternity leave. A small part of me feels pressured to jump back into the working community just like my pre-baby days. Maybe I feel like I have something to prove about being “that” working mum who does it all. Either way, there’s been a lot of anxiety and angst around my ability to keep up with work. Giving myself permission to be kind to myself has been incredibly difficult and I feel like I have to constantly apologise for postponing meetings and deadlines.

Thankfully all the stress, lack of appetite, and changing hormones balanced out my blood sugar levels. There were only a few days where I had to throw on a temp basal when I was at my sickest. The greatest help during this time was my CGM because there was very little chance I’d have any brain space or time to constantly check my blood sugars manually.

👏🏻 Make. CGM. Available. To. All. People. With. Diabetes. Who. Need. It. 👏🏻

A few people had been asking about how bub is doing. To which I honestly replied “I have no idea”. I’m 17 weeks pregnant now and it’s still a bit early to feel any kicks. The biggest reassurance I was given was that my body will tell me if something is wrong and so far nothing seems out of the ordinary. So don’t worry until you have something to worry about. But it is hard not to have the heart flicker in panic when you hear “has COVID impacted your baby”.

We’ve also been so lucky to have an amazing support network with friends and family dropping off food and supplies to keep us going. The regular check-in’s has been really comforting to not feel so isolated. Looking on the bright side, we were able to spend a bit more time with the family and my little girl practising her first solo steps! It’s not quite the family holiday I had envisioned but I’ll take what I can get at this point in time.