what brings me down – #DBlogWeek Day 3

May 14, 2014
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May is Mental Health Month so now seems like a great time to explore the emotional side of living with diabetes. What things can make dealing with diabetes an emotional issue for you, and how do you cope? (Thanks go out to Scott of Strangely Diabetic for coordinating this topic.)

After Diabetes Blog Week 2013, I drifted off and didn’t feel like blogging for a while. A few weeks became a month, and then three…then six…and…here we are, a full year later. But what I didn’t want to acknowledge was that something else was going on as well. Quite a few things, actually, and most of them either were directly related to diabetes, or indirectly impacted my diabetes the way every. freaking. living. thing. impacts my diabetes in SOME way, because it does.

What was that something else, that made/makes dealing with diabetes an emotional issue? Let’s see…

The best medical care I’ve ever gotten for my diabetes was in the “Sweet Success” program for pregnant women with diabetes, and a few women with type 1 in the preconception stage (like me). I’ve been seriously grieving the loss of that expert, kind, diabetes medical attention ever since I had to stop going to the program because I…

Couldn’t get pregnant, and realized that I’m not ever going to be able to get pregnant, and surprisingly enough, I couldn’t blame diabetes for that one – that I’m aware of, anyway. Nope. I did everything diabetes-related preconception-wise perfectly. But my body decided to play yet another cruel trick on me. No babies for this body.

It made – and still makes – me so incredibly sad. I was ready. I was going to do anything I had to do, to take care of my diabetes and my body and me, in order to safely and healthily carry and birth a baby. Success story? Well, as much as anything could be under my control, and plenty of it wasn’t, but the rest of it? The diabetes preparation? I was ON it. That’s all it was supposed to take, right? Right? I was supposed to want it bad enough that I’d take good care of my diabetes, and THAT would make the difference – that was what everyone (books, blogs, doctors, random others) said!
 
So I did. I cared and paid attention to my diabetes like I had never done before. I whipped that fucking blood sugar into shape – 5.8 HbA1c? 6.0? 5.9? DONE. Weight? Lost it – 20 pounds of it. Everything else they threw at me, I handled. Except it didn’t matter.

So much of this diabetes life is straddling the insanely fine line between THIS IS ALL MY PERSONAL RESPONSIBILITY AND IF I JUST BALANCE IT A LITTLE BETTER AND IMPROVE MY SKILLS AND LISTEN TO THE DR. AND COUNT THOSE CARBS AND START EXERCISING AND TESTING MORE AND…AND…IT’S ALL UP TO ME, TO DO IT RIGHT AND MAKE SURE NOTHING BAD HAPPENS.

and on the other, completely opposite hand:

NONE OF THIS FREAKING MATTERS AND NO MATTER WHAT I DO, IT’S ALL A CRAPSHOOT. RUN THOSE NUMBERS ONE MORE TIME AND SEE THAT EVEN IF I AM PERFECT, ANY OF THE AWFUL THINGS ON THAT LIST OF COMPLICATIONS OVER THERE COULD STILL HAPPEN. MAYBE THEY’RE HAPPENING RIGHT NOW. WHO THE HELL KNOWS? NOT EVEN THE FREAKING DOCTOR.
 
I’ve hit the point in my diabetes journey where I’m honestly terrified that complications will set in tomorrow. And also incredibly guilty, because I haven’t experienced many of a very severe level…YET…It’ll be 34 years on June 13, and I *should* be grateful and happy and accept how lucky I am.
 
But I don’t trust that I’ll be one of the so-called “lucky” ones who hit 50+ years without diabetes complications.

There’s the big bad, right there. I don’t trust diabetes not to whack me, or my loved ones, upside the head. I don’t trust that bad crap isn’t going to happen due to this crappy disease. Diabetes, and then infertility/endometriosis, really drained my trust away.
 
Fear. Anxiety. Grief. Pain. Worry.
 
Whether associated with big-picture diabetes life, or the day-to-day chronic diabetes disease management life…they’re there.
 
(Don’t worry – tomorrow’s post will be brighter, and I’ll remember to talk about the coping then too. Thanks for letting me release all this and just GO this far down – it’s a little scary, but I needed to saywrite it.) xoxo
 

Here are lots of other posts from #DBlogWeek What Brings Me Down – Wednesday 5/14!

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dblog week: we, the undersigned

May 14, 2013

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Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) – get creative!! What are you trying to change and what have you experienced that makes you want this change? (Thanks to Briley of inDpendence for this topic suggestion.)

Hello, medical schools, intern and residency programs in endocrinology! Also, greetings to nursing, dietician/nutrition, and CDE programs! Have I got a petition for you:

In order to form a more perfect union of fact and feelings; endocrine and emotional; medical and (real-life) mess…

In order to provide treatment for diabetes  that is more collaboration than compliance, and more recommendation than mandate…

In order to see people with diabetes as the human beings that we are, rather than some hypothetical model or ideal that we can never fully achieve…

We people with diabetes – of all types and treatments, all BGs and HbA1Cs, of carbs and/or protein, of various caffeines and d-technology –

Do solemnly (unless we’re reading some The Cinnamon, because really, that stuff is hil.ar.i.ous, and quite frankly, you should be reading it too) request:

All y’all need to do some time- and experience-intensive training in how to speak with us.

Because in those 7, or 10, or 15 minutes if the person after us has cancelled at the last moment, we really need you to make the absolute most of your time with us.

Ask us the right questions, about not only what we’re having problems with, but also what’s WORKING for us.

Spend most of your time listening to what we say.

Learn how to respond in ways that are supportive of where we are, and help move us (and help us make the choices to move) toward the healthier behaviors we already KNOW we could be using.

Have the most recent research available to support both your recommendations and OUR choices.

Don’t ever shame us or treat us like I’m stupid.

Listen to what we tell you. Ask us on-point questions about what we say, not about what you thought we said or should have said.

Tell us we’re doing a good job. Look and listen HARD to find something to compliment. Even if it’s just that we came to our appointment. (Because it’s not JUST that we came to the appointment. That could be EVERYTHING, for many of us, on some days…)

Refer us to resources that are worthwhile, that know what we’re going through, that are helpful. That don’t waste our time.

Don’t waste our time. These are our 7, or 10, or 15 minutes too. Make the most of them WITH us.

Play for my team. Cheerlead. Analyze. Strategize. Watch the play-by-play. Coach me on how to play better. But for cripes’ sake, play with me, not against me. And don’t just sit there on the sidelines, get in the damn game with me. I need you on my team.

In support of this petition, and in support of better and more training for medical professionals to treat people with diabetes of all types, with a firm reliance on the not-always-perfectly-accurate readings of our blood sugars and the protection of the injectable, oral, dietary, physical, and spiritual interventions necessary to keep us alive, we mutually pledge to you our interest in your success, our participation in the process, and our honor as people with dysfunctional pancreata who know what we really need in order to stay alive to the best of our abilities.

Signed, this Fourteenth day of May of the year 2013.

 

Click here for tons more We, The Undersigned petitions.


what they should know

May 18, 2012

I’m not stupid. My blood sugar is 40 mg/dl.

I’m not a bitch. My blood sugar is 398.

I’m not a whiner. My blood sugar is 285.

I’m not a spaz. My blood sugar is 52.

I’m not paranoid. My blood sugar is 36.

I’m exhausted. My blood sugar just dropped from 357 to 102 in 2 hours.

I can’t make sense of the sentence I just read 10 times on my computer screen. My blood sugar is 45.

I just started a fight with the woman I love, even though I know I’m wrong and she’s right. My blood sugar is 259.

I’m enraged. And crying. And hopeless. My blood sugar has been riding between 250 and 325 for 12 hours and nothing I’ve done has made a damn bit of difference.

I’m overwhelmed and can’t make a decision. My blood sugar is 55.

I am terrified and I’ve eaten 120 carbs. My blood sugar is 67.

I wish I could just feel my “real” feelings, and not have to wonder whether I really feel the emotions I think I feel, or whether the feelings are caused by the amount of sugar in my blood.

I’ve been called “emotional” many times throughout my life. I’ve never been ashamed or felt bad because of my emotions, and in fact I’ve been glad to feel them–the real ones. But I wish I knew how much of my emotions are due to wonky BGs and how much is really me, my emotions.

The BG-related emotions are fake to me. Imposters.

It’s really hard work to pull myself together and not completely freak out about the emotions that accompany high or low BGs. It feels like a huge load to carry.

And sometimes, I AM just stupid or bitchy or whiny or spazzy or paranoid or exhausted or confrontational or enraged or overwhelmed or overeating, and my blood sugar is a so-called perfect, normal 104. But I don’t want to hear anything about it from anyone. There. I said it.

WTF.

For other What They Should Know – Friday 5/18  Link List.

D-Blog Week 2012, Day 5: Today let’s borrow a topic from a #dsma chat held last September.  The tweet asked “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”.  Let’s do a little advocating and post what we wish people knew about diabetes.  Have more than one thing you wish people knew?  Go ahead and tell us everything.


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