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?
On 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.”
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.
The last three A1Cs.
My CDE asked a simple question:
“What do we need to do?”
I love that she thinks she can help. That she can do something. But I know better.
I’m a creeper. And I know why I’m creeping up, but I’ve been ignoring it.
I’m ignoring the beeps and buzzes of my Dexcom. John will hear it go off - in the other room, because I can ignore it more effectively if it’s not near me - and he’ll say: “Your diabetes is going off.” I’ll nod, say: “It’s high.” or “It’s low.”
Actually look at it? Well…
Take action on it? Well…
Sometimes it takes someone else to point out that you’re creeping. After I went to my latest appointment, John told me that he’s noticing that I’m not doing anything after I see my blood glucose level on a screen.
“Why? What’s stopping you from doing this when you know it will help you?”
The lows are scaring the hell out of me, because I’m not feeling them until they are so bad that my heart is pounding and I’m in panic mode. The highs are safety. And when they’re too high for too long, my action is to SWAG to bring it down, but never so much that I’ll be at 100. I want to feel safe. And I also know that I don’t have to be as vigilant if I know I’m high . And that’s dangerous.
“What do we need to do?”
It’s what I need to do.
Take action. Take care. Listen to the technology that I do have to help. Do it.
I’m not burned out, but I’m in that headspace where my own diabetes becomes a distant hum of a gnat I can’t swat, so I let it buzz.
My CDE and I upped my basal rate, looking at the graphs that were in front of us, and I’m hoping that the highs will stop being so high - and I’ll work on listening to the Dexcom.
It takes listening to others sometimes to make a change happen. Listening to your medical team, your family and friends, and the DOC. (Because, DOC, knowing that I am not the only one who does this makes me feel not so alone.)
And then doing it.
So, thank you to my CDE and John and the DOC for being the “we”.
I’m done creeping for now.
I’ve never heard anyone describe injecting insulin as graceful or gentle.
The needle bears down onto unblemished skin that begs to not be pierced. Nerves scream in anticipation as the metal bores underneath, invading the sacred temple of the body and pushes the very cells that give me corporal nourishment. It sears and brands the skin around it, leaving a physical scar behind as a permanent reminder of what I must do to stay alive.
If I told a stranger that I hurt myself on purpose daily, they would recommend psychological counseling immediately.
Not every needle insertion is a hot branding, but when you must, without fail, do this tortured dance for the rest of your life, knowing that you have endured over three decades of this, it begins to ache deeply. Even with smaller needle gauges and shorter lengths, no one has ever gleefully clapped hands and asked to be mutilated for their health.
Over and over, a lancet finds its target somewhere on a finger, slicing into the same tender skin that strokes my daughter’s hair as she drifts off to sleep. It’s become rote at this point, a slight turn of the head at the same nanosecond that the button is pushed to draw blood. A sting, temporary, to decide on the dosage of the drug that will keep me alive but could also render me unconscious or dead. That sting, several times a day, over time, is a weight that drags me to the bottom of the ocean, gasping desperately in my dreams.
Too much insulin and diabetes hurts. It starves brain cells and prevents me from making rational choices. The throbbing between my eyes competes with the violent contractions of my limbs to squeeze out the last vestiges of glucose within my muscles. My throat constricts, choking on the words needed for help.
Too little insulin and diabetes hurts. Toxic sludge sloshes through my veins, spewing poison into every organ and damaging the beautiful body my soul holds, shutting down the potential of a long life and health. The complications build an ugly monument where the delicate framework of what I am once stood.
The guilt crushes you, despite your best efforts of controlling what is uncontrollable. The questions of why build to a deafening roar. Labs slam your body into a corner, even when the results are expected. It infiltrates and infects those around you who love you and can’t live in your body or take the burden from you.
You may accept this disease. You learn to live with it, try to tame it, keep it in check and at bay. You talk about it, claim it, share your thoughts with those who understand. But it bites and scratches and never relents. It will sink its viper fangs into you and not.let.go.
No one said it would be easy. I knew it would be hard.
But no one told me when I was diagnosed that diabetes hurts.
One step, two steps. Stop.
Look at the weathered signpost and decide where you need to go. Don’t ignore the signpost or think you know what it says so you don’t even look at it. It may surprise you. It may point you in a completely different direction.
This journey is not comfortable or easy and it is long. Oh, so very long. I wish I could tell you different. And your journey is not my journey. We will share the road for a little while, but you have places to go far beyond me. But before you head off…
Let the anger go. It drags on the ground behind you, bumping against your heels, slowing you down. The missteps of all our pasts lead us to where we are now, which is not a deep hole that swallows you to the bottom of the earth, but at the starting point of a new day.
It’s not like riding a bicycle. You can’t just hop on and start pedaling off into the distance. The tires are flat and the gears are rusty. Take the time to build up your strength and fix the bike you’ve been given. Paint it a beautiful color that sings to you.
One step. Two steps. Stop.
I’ll tell you a secret. We all have secrets that we keep. When you share a secret with a kindred spirit, it becomes a bond that strengthens you both and helps you move forward.
There is no respite on this journey. There is no soft cushion for a weary soul. No place to rest a weary brow or cramped feet. I’m not pointing this out to be harsh, but to tell you that you are never alone in your travels.
Lean on me. Lean on others. Remember, however, that you will one day have someone who needs to lean on you for support, so learn how to take care of yourself. I know that’s hard right now.
One step. Two steps. Stop.
A new signpost. You swear you’ve seen it before, but look more closely. Run your fingers across the wood. It is different. A different place that seems so familiar. You want to turn back to where you believe you are comfortable. I’ve been there. It’s not safe for any of us. Keep walking.
There is no final destination. No end. Just a horizon in the distance that if you raise your eyes, you will see.
It’s beautiful, that horizon. We may never reach it, but for now…
One step. Two steps. Stop.
Keep breathing. Please. Keep breathing.