It’s National Diabetes Awareness Month.

Last night I had a meeting with some friends for coffee and fellowship.

I came home from work in pain, and exhausted. Par.

I changed into comfortable clothes, grabbed my wallet and keys, and left.

Halfway there, my continuous glucose monitor alerted that it was expiring in 30 minutes. At the same time, my blood sugar was low normal – and dropping.

In that moment I realized I left my “pancreas” at home – the nickname for my bag of diabetic supplies, including insulin and a manual glucose monitor.

I had to eat – regular meals are critical for my blood sugar regulation, and I know from experience it was dinner time. To ignore it meant sure hypoglycemia.

So I pressed on to my destination, and ate dinner with my friends.

In the nearly two hours I was there, not one minute was spent where I wasn’t anxious about my blood sugar.

I knew logically that the carbohydrates I consumed would be adequate to maintain a reasonable blood sugar…but would my blood sugar bounce back from the low it was heading toward without side effects? Would the carbs I consumed before I drove back home and checked my blood sugar manually drive my blood sugar to hyperglycemia?

When I got home I had to attend to my disease right away. I checked my blood sugar – it was a little higher that it normally is after I eat. I entered my blood sugar reading into my insulin pump, and it gave me my insulin.

Next, I replaced both my transmitter and my sensor on my continuous glucose monitor. I have to put the device numbers in my phone and insulin pump, then prep the skin, and use the insertion device to drive a needle into my body so it can deposit the cannula that reads my blood sugar.

I also had to refill my insulin cartridge, and change my insulin pump site. More skin prep, another needle driving in a cannula. Secure with tape.

Before bed, I had to manually check my blood sugar again – the continuous glucose monitor takes two hours to warm up. My blood sugar was borderline, so I had to have a small snack. I didn’t want it, I wasn’t hungry…but I had no choice.

When the CGM finished warming up, it awakened me with an alert. I glanced at my blood sugar. It was okay, so I went back to sleep.

Like the vast majority of people, I don’t pay much attention to these cause dedicated monthly events, but now I am part of the 8.7 million people worldwide who are living with type one diabetes.

I try and stay grateful for the amazing technology that makes managing my diabetes so much easier.

The continuous glucose monitor (CGM) which has literally been a lifesaver, alerting me to high or, more dangerous, low blood sugars. The accuracy of these readings help me when I need to give myself insulin.

The insulin pump, which is a closed loop system that gives or holds insulin, based on that blood sugar reading it gets from the CGM.

The food apps that give me carbohydrate data that I input into the insulin pump to keep my blood glucose in range.

I’m grateful.

Eleven years ago, I was erroneously diagnosed with type 2 diabetes. This happens a LOT to those who, like me, have adult onset type 1 diabetes. EVERYONE responds the same when I tell them how old I was when I got type 1 diabetes – “ I thought only kids got that!”

Nope.

Here I am, five years into my T1D diagnosis, and it is hard.

I’m writing this blog in the 0400 hour. Sleep is one thing that is regularly sacrificed on the TID altar.

I used to have no problems sleeping – I fell asleep easily, and slept for hours.

Those days are gone.

Diabetes consumes my life.

“Carefree” has been lifted from my vocabulary.

Hundreds of times a day, I glance at my smart watch to see what my blood sugar is. I have to make sure I stay ahead of any trends up or down that need to be addressed.

There is no such thing as too tired or too busy to eat – I HAVE to eat. Decades of bad habits are hard to break – but I have to break them to stay the long term sequela that can render me riddled with neuropathy, blindness, or permanent organ damage.

I have to think about EVERYTHING I eat and drink. Every single carbohydrate is counted, via online apps or practiced best guesstimate. Before I eat I have to determine the carb amount for my food, and enter it in the insulin pump, so it can give me (hopefully) the right amount of insulin.

Drinking beverages with carbs? I gave that up. I drink a LOT of water. I have my coffee with artificial sweeteners. I drink diet soda. Not because I want to – it’s just not worth it to deal with the sudden high blood sugars that are hard to control.

I’ve also given up favorite foods – I used to eat a LOT of cereal. Now, cereal and milk shoot my blood sugar up drastically despite insulin, so I don’t eat it.

The lifesaving diabetes management devices of mine devices are a double edged sword.

The CGM is inserted with a decent sized needle, where the cannula hovers just under the skin for 10 days, until it must be replaced. The insertion site can fail due to scar tissue or insertion issues – and it has to be replaced immediately. Or the transmitter, which lasts 90 days, may malfunction. Or the Bluetooth may not connect for a continuous reading. Or I may roll over in sleep and a pillow will block the reading.

The insertion devices are cheap and fail often, leaving me chasing high blood sugars down as I try to determine the culprit. Devices alarming due to this wake me up, keep me preoccupied, and haunt my dreams.

The insulin pump is the biggest hassle. When it works, it’s great – but it’s site has to be changed every three days. I have to meticulously keep the skin clean to stave off a pump site infection. The needles that insert the cannula leave scars, and often nick unseen capillaries, leaving large purple bruises on my arms and abdomen. I have to wear it clipped to my clothing so it won’t fall and break – it costs as much as a used car. I have to get creative.

I cannot go ANYWHERE without bringing juice or candy or glucose tabs. That’s just for the quick trips out of the house. For anything over a couple of hours, I have to carry food. My car has juice boxes in the glove box. Always.

There is no spontaneity. When I plan a vacation, I have to be sure medical care is readily available, and I have to have a good protein source for meals, as well as emergency juices, etc. I must have a way to keep my insulin cool. I have to carry a bag of diabetes supplies, in case my devices fail. A manual glucose monitor must always go with me, along with lifesaving, expensive prescription glucagon or the like – mysteriously not covered by insurance, but essential for blood sugars that won’t stop falling to dangerous levels.

Exercise? I need to do it. I haven’t figured out yet how to do it without having sudden, precipitous low blood sugars. I’ve got a pile of books on diabetes, and conflicting opinions keep my head swimming.

Then there is eating in general. The opinions from the medical field vary wildly. Balanced ADA diet (causes weight gain for me, and isn’t my way of eating). Keto or low carb (worked great when I had pancreatic function still. Now I don’t want to live on meat and cheese). Whole food, plant based vegan (by far the best plan for me – this lifestyle keeps my blood sugar the most stable, decreases my insulin use, and is the most satisfying- I love fruit. But after decades of eating like an American, I’m struggling to stay 100% compliant.)

There are many more diets out there, not to mention the constant (usually) well meaning souls who feel the need to police what I am eating. Want unsolicited advice on what you should or shouldn’t be eating? Identify as a diabetic.

There are also dozens of extrinsic and intrinsic factors that influence my blood sugar every single second of the day – so even when I am “doing everything right”, I may still be on a rollercoaster of high and low blood sugars.

It’s exhausting – mentally and physically. It’s relentless, and my immune compromised self is wrung out from the metabolic war that never, ever stops. I live in a state of constant, unrelenting exhaustion. I work full time, I try and take care of what I need to around the house, I want to spend more time with my family. I am utterly exhausted.

Another night comes. I’m up a couple of times a night on average, and due to diabetes complications with rollercoaster blood sugars, and/or devices alarming, many nights are sleepless.

Hypoglycemia feels like crap and stops me in my tracks. It must be addressed immediately- if my blood sugar gets too low I can have a seizure, or worse. As I’m combatting it by chugging OJ, I’m shakey, dizzy, sweaty, and I can’t think clearly. It is not enjoyable.

Hyperglycemia makes me feel out of sorts, fuzzy and awful. I’ve spent many a sleepless night titrating insulin, trying to get to a safe number I can sleep with.

My lab work says I’m doing a good job “controlling” my diabetes. My endocrinologist and diabetic educator are happy with me.

I’m vigilant, I’ll give you that.

It’s still the hardest thing I have ever done – and it’s here. Forever.

I pray for a cure in my lifetime, even as I’m grateful for the lifesaving insulin that is a part of my life.

In the mean time, I just want to get some rest.