It Is Better to Burnout Than to Fade Away… (with Diabetes)

Neil Young is perfectly correct when he sings this….

“It is better to burn out than to fade away…”

– Hey, Hey, My, My from Rust Never Sleeps

I feel this way when it comes to diabetes burnout in general, and I had my own brush with online diabetes burnout a few weeks ago. Fading away (just ghosting from the online community and not coming back) is real. A few of my peers have done exactly that over the past ten years since the DOC took shape and I wonder sometimes what happened to them.

Did they have a bad experience online? Did they find they couldn’t connect or get their voice heard? Did they really intend on fading away… or are they just burned out?

DOCburnoutDayOn September 1, 2015, Diabetes Daily will be hosting the first ever Diabetes Social Media Burnout Day...a day in which we can all blog and discuss how we “personally maintain our own emotional wellbeing within the bustling, passionate Diabetes Online Community.”

Here’s the challenge: Think about how you deal with social media issues relating to diabetes and how you internally deal with it.

Do you shut down? Step away? Dig in? Reach out? Do you have a story to share? Do you have advice?

You don’t have to have a blog to discuss this topic.

This is what Diabetes Daily is asking all of us to think about:

“Do you take breaks? Have you been the target of an attack? Felt bullied? Unappreciated? How do you heal, endure, recharge, or reconnect to find your own happy balance within this powerful and tremendous community? Share your tips for thriving/surviving burnout in the DOC on your blog, and in the comments section on DiabetesDaily.com’s burnout blog on September 1, 2015.”

#DOCburnout2015

And because the DOC isn’t just about blogs, you can share your thoughts on Twitter and Facebook using the hashtag above.

Fading away is OK. Burning out shouldn’t be.

Let’s think it over and talk about it on September 1.

As A Jaybird

1051853_45298648Naked.

Completely naked.

As a jaybird. (That’s a saying that I heard as a kid, and here’s the saying’s origin.)

It’s rare that I get to be completely naked. You know what I mean. No insertion set. No CGM sensor. Nothing extra to hold or unconsciously shield against doorway scrapes or zippers.

I change my insertion sets every three days and my CGM sensor every ::mumble mumble:: (as long as I can get it to last, but you know, officially it’s seven days…), so it’s not often that both attached to my body items are missing.

I had snuggled under the covers, having done my last BG check of the day and put my Dexcom receiver next to my head. As I slid my arm under my pillow, I felt the tape give way.

“&$#(*^*!”

It was a beautiful run with this sensor (not just for the beautiful graphs for the past weeks, but accurate from start to untimely demise). Nighttime lows are becoming less frequent (and less severe) for me, although I tend to skim the bottom line of my low alert if I’m not careful. Having the Dexcom off my body at night is foreign these days, but I was cozy and comfy and sleepy. The Kid woke me up at 3am. She acted as my backup CGM (she just didn’t know it) and I sucked a juice box down and woke up at 74.

Raise your hand if you feel strange too when you rip that insertion set off your body before a shower!

There’s a moment of “I have nothing foreign on or in my body.”

There’s a moment of “It’s just me.”

There’s a moment of “This is what it used to feel like all the time.”

Then there’s a moment of “I’m glad I have the tech that I do have.”

The stars align sometimes and I feel free from the physical burden of diabetes technology that keeps me safe and healthy and alive.

I also feel naked without them.

As a jaybird.

Diabetes & Personal Space

Different cultures have their own idea of “personal space”. I’ve lived in other countries and worked in companies where my own concept of “umm… you’re a little too close…” has been questioned. It’s a matter of how you were brought up and how comfortable you are in your own skin combined with the ability to be perfectly fine with someone standing very, very close to you when having a business discussion.

This isn’t an anthropology blog (although, really, aren’t we all studying human behavior in relation to diabetes, so…), but I am starting to feel like my personal space is being invaded and I don’t like it.

I’m a hugger. A snuggler. A squisher and a giggler and a tickle monster when it comes to my daughter. I am sometimes the instigator but as The Kid has grown older, she wants to attack me with the same happy ferocity and fire the first shot across the bow of runaround shenanigans that I used to incite. And the sensors and infusion sets on my abdomen are getting in the way… and they hurt. And that hurts me.

The real estate I have on my body is limited (seeing as I’m limited in stature and subcutaneous tissue locations). The current trial I’m conducting with the Medtronic MiniMed 530G with Enlite only allows placement of the Enlite sensor on my abdomen. I had three failed sensors last week. Three. Every time one failed, I had to find a new place to put the next one.

I am placing my infusion sets on my upper abdomen to stay out of the way of waistbands that chafe. I’m reluctant to put the sets anywhere else (I rip them out of my arms and legs far too easily, even with taped down tubing), but I’m thinking I may have to rethink things here, because…

I’m running out of my own personal space because of diabetes.

braveheart-crazy-faceThe worst part of this all is the reaction that I have when The Kid comes barreling straight for me, screaming wildly (causing me to have Braveheart flashbacks) for a hug… I tilt my abdomen inward as if pulling away from her. To protect the sites in the small space I have to use, I sacrifice the full body hug that I want to give. Every time I lift her up, I must be careful not to scrape her legs against my abdomen. Tickle war on the bed begins with a “Careful of my pump, sweetheart…”

And of course, I know that I have options. Take all the diabetes gear off. Go back to MDI and no technology. I understand that I am lucky. The technology has kept me alive and healthy so I can complain about not being able to hug The Kid as tightly as I want… and I hope I’ll be able to continue to complain about that long after we send her off to university. By then, I am sure it will be she that complains that I am hugging her too tightly.

But today, diabetes is invading my personal space. The space that is sore from repeated pokes and prods and insertions. How do I tell it politely to step back?

I have no idea.

 

Daily Diabetes Mantra

Forest Sunrise

At some point each day, I’ve said these words to myself. This has become my diabetes daily mantra.

1. I am not a number.

Diabetes is a numbers game. The house always wins because the cards are stacked. We are often judged, (often wrongly, by the way), on how well we are managing our diabetes by numbers. “Your blood sugar is 256? What did you eat?” “Why are are 46 right now?” “Your A1C is higher than it should be.”

I am more than a single number. More than a series of numbers. External influences can chip away at the concept of perfection and leave me frustrated. Stress? Illness? Delayed gastric emptying? Too much exercise? Not enough food? Too much food? Gah. That’s called living, everyone.

The numbers that I see on my blood glucose meter are not me; they’re signposts to help me get to where I need to go. The numbers are just points on a graph. Those numbers are a destination, a starting point, and not me.

(Ever see The Prisoner? It was a British show in the 60s that was weird and wonderful at the same time. Every time I say this to myself, I channel this quote from the main character. He says: “I am not a number. I am a free man.” )

2. It’s a new day. 

The day may start at 2am with a hypoglycemic reaction and a blaring Dexcom or a high blood sugar and two glasses of water, but I have the opportunity to mold the day into something new. Yes, yesterday may have been fraught with a roller coaster graph on my Dexcom G4 (or problems with seeing that graph) and today may be the same (or completely different!), but I’m going to make the decision to McGuyver it into something that I can live with.

3. I’m not the only one.

There are millions of people who do the daily dance with diabetes (tango? lambada? electric slide?) and there is comfort knowing that I’m not alone. Need questions answered? Medical team. Need an “I get it”? DOC. Need a hug? Family and friends. Or hell, I can wrap my arms around myself if no one’s in the vicinity.

I also need to remind myself that my family is also dancing with me. (Sometimes The Kid provides a little levity when she dances.) My diabetes impacts those around me, so I’m not the only one who has this burden. I have to show my love and appreciation for them and what they live with, too.

4. I can’t undo the past.

After 30 years, I’ve made my mistakes – and not just with diabetes. I can wail and rage all I want about the high A1Cs in my teens and diabulimia and what it may have done to my health, but those years are etched in stone (and my body). All I can do is focus on what I can do today to mitigate the damage by living well from this point forward. It’s OK to remember those times as cautionary tales, but the present is where I need to be so that I can have a future.

5. Take a moment and breathe. 

I live at breakneck speed in my head, even though I may be sitting on the couch. If I don’t slow down and take a moment to breathe, I will not be able to think about what I need to do with clarity. Mindfulness is a powerful tool that may take years to master, but only a few minutes to start. Focusing on breathing in and breathing out helps to calm me down and center me, so that I can head off in breakneck speed again – but with a seatbelt and airbags.

What is your diabetes mantra?