The retailers and I are out of sync. My mood is black and my can-do attitude, optimism, and gratitude are all in the red.
I’m tired of being grateful — at least for things like modern meters, fast-acting insulin, CGM alarms, health insurance… What was I supposed to be grateful for last night when I had to wake the Bear up twice to drink juice because her bg was in the low 60s? Should I have been grateful that I’ve been getting up 1-3 times/night since September 25 trying to find a pattern and then make adjustments? Or maybe grateful that she was running low suddenly after weeks of numbers in the 200s & 300s over night? Should I thank diabetes for giving me a week of high numbers that don’t respond to basal changes or temp basals until it gives me 2 days of strange lows only to go back to highs? I was grateful last night that she actually drank both juices without much struggle – even though she looked in my direction with vacant eyes – so much worse than “not-awake”. But, really? That’s what I’m grateful for?
So I went to bed sick and tired of diabetes. Thought my own basal changes hadn’t worked the night before only to discover before bed that I had created a new basal profile but hadn’t enabled it. Not paying enough attention to my own overnight lows has of course led to many of the nights between 9/25 and now adding 2 more times to wake up because my CGM is beeping (below 55! LOW!) or I have sweat through pajamas, sheets, mattress pad. And, I got to be grateful that when I woke up to test the Bear at 2:30 a.m. the CGM said I was 85 (not 55!) but the arrow was pointing SE so I had some glucose tablets anyway.
Black mood. Definitely don’t want to go shopping. Don’t want to count carbs, calibrate CGM, keep remembering that look – that non-look – in my daughter’s eyes, don’t want to keep pushing the huge boulder that is analyzing patterns & trying to out-guess a growing 6-year-old body to adjust insulin dosing up a hill that has already been 2 months long and I still can’t see the top.
Recently watched Kerri Sparling’s vlog “Talking About Diabetes Burnout” (“Diabetes is every day. Burnout doesn’t have to be.”) and I recommend it for all of us. Sometimes we are going to be in burnoutland. And admitting it, validating it, not hiding it (as we do SO well), not making it all look so easy on the surface, can actually be part of what helps. The #dsma chat last Wednesday was all about advocacy but some of the conversations were also about advocacy burnout… the feeling sometimes that we’re only preaching to the converted, that Diabetes Awareness Month mostly reaches PWDs, and doesn’t have the reach or impact that those pink ribbons do. And, isn’t it hard enough to manage everything that we do on a minute-by-minute (at least some days) basis without also doing a bunch of advocacy that doesn’t seem to change anything? [It’s really too bad that I’m so fussy because of my “diabetes” and “vegetarian diet” that I’m difficult on family holidays like Thanksgiving. Every. Year.]
Now, we had conversations about how advocacy empowers us, gives us more comfort and freedom, can change the national conversation with the FDA, Pharma, Insurers, Medical Device companies, can make relationships with our medical teams more positive and collaborative. And look at what advocacy like the Big Blue Test and organizations like Insulin for Life and Children with Diabetes and JDRF (and insert your favorite org here) has achieved in advances in technology, insulins, access to insulin for third world countries (and our own).
Diabetes is a disease that is nothing if not contradictory: it makes us strong and weak, it gives us control over something that is inherently uncontrollable, it can be lived with well and it makes life incredibly difficult, it can inspire us to make healthier choices than many of the “healthy” people around us and it can steal our long-term health with complications like kidney failure, visual impairment/blindness, physical pain or amputation, cardiac disease. I am optimistic and pessimistic about technology or a cure at the same time. I feel capable and like a failure at the same time. I feel lucky to be able to have my own experience to help the Bear with her diabetes and I feel guilty that she has to prick her fingers, feel lows and highs, and everything else.
It’s ok if you are feeling burned out with your diabetes. It’s ok if you want to say to your T3s: I am sick of diabetes. I am resentful of having to weigh things and count carbs and calculate insulin and pre-boluses and exercise timing while you just sit down and eat. I’m literally tired of losing sleep overnight for blood sugars that seem to change every time the wind blows in a new direction and tired of moving through days either wiped out from cells starving from low blood sugar or starving despite high blood sugar.
And then, take a deep breath. When the BHE says he’ll hold down the fort while you go out for a walk — go. Listen to your little girl laugh and really look at her sparkling eyes — let that crowd out the memory of her nighttime vacancy. Be grateful for what you can and let the rest go. And, if you can’t do any of that today — that’s ok too. Tomorrow is always a new day.