Showing posts with label DOC. Show all posts
Showing posts with label DOC. Show all posts

Saturday, April 20, 2013

Ignition

Today's Prompt: Burnout. Write about burnout. What does it feel like? What are your burnout triggers? What gets you OUT of the pit of despair when nothing is going your way?
Today’s post was recommended by Lori of http://misdiagnosedme.wordpress.com/

Not everyone experiences burnout in the same way, but I believe that anybody managing a tedious chronic illness will come up against that match that won't ignite one day. That wet log that won't spark.

I know burnout. I spent years there.

I sat next to the ashy firepit and dutifully stoked the fire, poking at it with lancets, blowing on numbers that didn't budge. I just also knew it was pointless. My fire wasn't burning.

I never really stopped checking my blood sugar except for about a month in college. And I didn't even realize I'd done it. I was just busy. Backburnering the Big D. I found this photo from Thanksgiving Day at my grandma's house when I was 22:

I remember checking my number before the big feast that day and scrolling back and seeing that my last check had been in October. It frightened me. I started trying to remember to check again. I threw another damp log on the empty firepit.

Burnout for me meant that after over a decade of doing what they told me to do - testing, injecting, pumping, measuring, etc - my numbers never got better. My A1c never improved. I never felt better. The doctors were never happy.

It was exhausting seeing no results. I truly believed my diabetes was unlike other people's diabetes because when I did what I was told, I still had lots of high and low numbers. No one in the medical community told me that that was NORMAL. They didn't understand how I could let my fire go out. Try harder.

Okay, thanks.

It took a few major changes in my life to come out of that years-long burnout. Each change provided a little turbo boost for my burnt-out ignition.

My new career as a teacher meant that I had to be on my A-game for my students. The day I had to borrow fifty cents from a high school student because I was low and didn't have any food with me to treat was the spark of a match.

A bad relationship ended and I was alone and facing a future I'd imagined differently. I needed to figure out how to be more financially independent and how to live completely on my own - which is freaky with diabetes. Another spark.

My new endocrinologist was supportive and knowledgeable. And a year later, so was my new educator. They saw a light switch that needed flipping.

Meeting my husband changed everything. He was a loving package of support, reminders, and patience. He took some of the confusion and guesswork out of my life, provided me with structure. He lit the pilot light.

And then he brought me to the online community where, after 18 years with diabetes, I learned that my diabetes was normal. I was normal. And I felt a flame start to flicker.

By the time I was pregnant with Sweetie, the fire was roaring. Roaring. It seems easier to tend a flame when it's so warm and bright and present.

I think about my diabetes all the time now. I can't imagine going back into that dark place. And when the tedious tasks of prepping the kindling and occasionally getting burned seem to be too much, I remember how cold and lonely it was next to the empty hearth.

After all, once you know the secrets of the Fire Swamp, you can live there quite happily for years. I'm not saying I'd like to build a summer home here, but the trees are actually quite lovely.

Unrelated to the content, but this is a photo of how I typed this post.
Though I suppose Dibbs could tell you all about exhaustion.

Saturday, April 7, 2012

Ugly Ducklings

Today's Prompt: Health Activist Writers' Choice

Since I am choosing my topic today, I'm going to give a nod to the April Blog Carnival topic from Diabetes Social Media Advocacy, or as we lovingly call it, DSMA.

Describe your ideal diabetes “support group”? What would you discuss?

I attend a lot of support groups...once.

I know that there are type 1 adults in the Dallas metroplex. I run into them occasionally. They go to my doctor, they show up at the odd JDRF event, and I am occasionally contacted by my local Omnipod reps to meet with one occasionally through my consulting agreement with Insulet Corp. I've met some cool women - Carrie, Patra, Cheri, Cindy, Angela.

But when I try out a new support group, instead I usually find myself in a room of people who know a LOT less than I do. Who manage their diabetes a lot like I used to or a lot like our 'ancestors' a decade ago. I meet grumpy old men who stand by their particular treatment or brand of pump. I don't meet anyone like the patient advocates I know from the online community.

What I get from the DOC (Diabetes Online Community) is fantabulous. It's available 24 hours a day and all I have to do is pose a question, start a thread, use a hashtag...and real human beings with honest experiences are there on the other side.

But if my face-to-face meetups with some of those folks have taught me anything, it's that there is something magical about the warmth of a hug from Scott Strange, the sound of Sara Nicastro's laughter, the taste of Bob Pederson's salsa.

These moments where you get to come face to face with people who love you and barely know you. I've written about these people and these moments before.

So I already know what I'd love my local support group to feel like. What it would require to provide me with the support I need to get through rough patches. What I'm not getting from the groups I've been to here.

Accessible. I've tried to get involved with several groups on a local level, but everyone's work schedules and geographic location make regular meetings within a drivable distance extremely challenging.

Sure I'll meet you at that coffee shop. Oh, it's an hour away and I need a sitter for my kids and I get to drive in rush hour? Oh joy!

Most people here don't seem committed enough for a regularly scheduled event.

Knowledgeable. This is going to make me sound snotty - which I am - but I would get more out of local support groups if I felt I wasn't constantly educating many of the other participants.

Okay, yes, that's my problem. I could just shut up (I'd need to sit on my hands with a gag in my mouth.) I do so enjoy having an opinion on everything. I'm not a licensed diabetes educator, but I have an uncontrollable urge to correct misinformation when I hear it. And as they say, maybe in the land of the blind, the one-eyed man is king.

When I get together with other patient bloggers - people with the same or more experience as I have - I feel like we are a bunch of equals. The one-eyed man finds his cyclops village. (oh, the sentences you never expect to type)

Listen, I LOVE sharing what I've learned - especially since I learned most of it recently after a long battle with ignorance, but going to these meetings, I often feel like I offer support that I don't get in return.

To truly find support, I need peers.

Light-hearted. My support group would look exactly like the living room at Jess's house when we went to Kansas City for Simonpalooza.

Spouses chatting it up in the kitchen. A table full of homemade snacks. Couches and chairs full of laughing friends. Becca the alert dog sleeping discretely under a bench.

And my toddler (butt in the air, far left) overturning unmanned red Solo cups of diet soda.
Until I can recreate that, the weekly DSMA chats and my TuDiabetes community will have to suffice.

This post is my April entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/april-dsma-blog-carnival-2/