Yesterday I listed a few of the diabetes “mistakes” I made over the weekend.  I put the term “mistakes” in quotes because I don’t think they really are diabetes mistakes, but they often feel like them.  I make a lot of diabetes “mistakes,” every time I open my eyes and start my day or close my eyes and try to fall asleep.  It’s a fact of my life—I can’t get it right all the time no matter how hard I try.

Maybe that’s what so many people struggle with when dealing with their diabetes—the sheer lack of ever reaching perfection.  Maybe for some of us we have areas where perfection is attainable—maybe not.  All I can promise is that diabetes is not an area where “perfect” should enter if you want to live your life and be happy, ever.

But what do I think are true diabetes mistakes?  On my run yesterday I thought about it, and came up with three things I truly think are mistakes when it comes to life with diabetes.

Ignoring/Denying it.  Life with diabetes is pretty awful and scary if you deny you have diabetes.  It’s emotional, it changes every five minutes, you have everyone else offering suggestions and voicing opinions, you’ve got people worrying at you, and YOU are busy trying to ignore your own questions you have… it’s exhausting.  Choosing to live like that is, in my opinion, a mistake.

Fighting it.  I don’t mean fight the good fight; I mean feeling angry at yourself for ever making a mistake or refusing to accept your current health situation.  You’ve got diabetes and it isn’t going away… no matter what happens.  If you can’t accept that, you’re fighting a losing battle.  Focus your energy and drive toward being the best you can at whatever you want to be and do… but don’t let fighting your body’s disease consume you.  You were never supposed to sacrifice your potential at diagnosis; doing so is, in my opinion, a mistake.

Feeling helpless. Diabetes is not whatever you thought it was when you were first diagnosed.  You will have good days and you will have bad days and you will want to throw your disease out the window some days and some days it won’t be so bad.  But feeling like you are out of control because you have a certain meter reading or string of meter readings does not mean you have failed or can’t improve your situation.  Be it a fix that takes an hour or a month, you have too many tools at your disposal to ever justify feeling helpless. Even asking for help means you aren’t helpless; you are taking a step for your body in the right direction.  Being silent and feeling helpless is, in my opinion, a mistake.

Any others you’ve come across YOU would call a real diabetes mistake?

If you’ve ever sat in a class and heard the teacher say “there are no stupid questions” and thought in response “there are at least some we don’t need to listen to someone else ask three times,” let me phrase things a different way.

There are relatively few ways to screw diabetes up.

And they are sort of a humungous deal when you DO screw them up… so nearly every other little thing is, joyfully, a little thing.

I get the sense that maybe some people are hesitant to share ways they’ve tried (on purpose or not on purpose) something new with their diabetes management.  I hate that; so I’m sharing some of mine, just from this weekend.

And I call myself an expert. 

First off: these are in no particular order.

Secondly: I’m okay with you eye rolling at various things (Lord knows my eyes roll all over the place, at myself) but appreciate your non-negative responses.

Thirdly: why don’t I start.

1. I forgot that I ate a bunch of figs last night with my dinner (and bolused for them) so when I was high later I couldn’t figure out why (I remembered only eating a salad).  It took me about 45 minutes to remember and realize I have no idea how to bolus for a fig.  (The sizes are all so different and what the online place said always seemed really high for the amount of fig actually in my hand.)

2. I almost forgot to put new strips in my running belt.  THAT would have ruined my run that turned into a bit of an adventure… I have more fun on adventures when I have my meter.

3. I forgot that my doctor changed my basals last week and was really irritated that when I woke up late and I was high.

3a. I’m curious if my promising my doctor “Even if I don’t eat I don’t go low” was a figment of my imagination… but can’t really promise anything as I’ve been waking up high and bolusing between 1-3am each night.

4. Debatable issue: whether I should have even listened to my doctor when she was changing my basals… I decided to let them go for a week and then see if I want to change them back.  (Because I upload my pump data, I know I have them saved!!  If you haven’t saved your pump data: DO IT RIGHT NOW.)

5. I think I’m on at least day four of my pump site.  I wanted to change it the other day but lazed out and kept it in.  I’m still here so I guess it’s still good.

6. I wanted to change my sensor yesterday when I put on my run belt and it smacked right into the site.  I left it in, ran with it in, and have since kept it in.  It’s not the most accurate location, so today is probably the last day.

7. I have a bright red sunburned splotch on my arm because I didn’t want to mess with the pump site on my arm.  That’s silly and I should have sprayed it; seriously what did I think would happen if I got sunscreen on the site?  Nothing. The splotch looks silly.

I’m sure there are more “mistakes” I made in the past (count them) TWO days.  And I’ve had diabetes for 24 and a half YEARS…so you can imagine the number of “mistakes” I’ve made.

In general, I think the only diabetes mistakes that count are the BGs you don’t check and the medications you don’t take.  Everything else is learning and experimenting and LIVING.

Chatting with the fellow at my doctor visit yesterday, she seemed to marvel at the randomness of my life and my activities any given day.  Then she said she has seen that a lot of diabetics are afraid to do anything active, and that it sort of spills into other areas of their lives, too.

Gah.

I think people with diabetes try to focus on their disease and what that job requires and somehow give themselves permission to stop doing that other job they have.

Because we really have an incredibly important and highly specialized job we are in charge of every minute of every day when we function for our pancreas, or try to function for our pancreas.  But we have a simultaneously just as important job we are in charge of, exactly like everyone else: we are in charge of LIVING OUR LIVES.

I’m willing to bet that the scientists involved in discovering, testing, and manufacturing insulin, long acting insulin, short acting insulin, metformin, glucophage, what have you were not in it so that we could all hole up on the couch and say “I’m done now.”

I think everyone is working so hard to actually make our lives BETTER… but WE have to meet them more than halfway.  WE have to have lives we are already living!! 

To wait, patiently or impatiently, for a cure or for the next latest and greatest thing to come around that will make our self care better or easier is not what I think my life with diabetes is or should be about.  If you feel that you need to wait until you have the opportunity to live, well, I would respond that you already gave up.

I’m not afraid of being high or going low or finding myself in a situation where I need to stop and go into a store and ask for some Coke even though I have no money on me.  I’m not waiting for someone else to do anything– I’ve taken responsibility for my own life and whatever that requires.  Yes, that will involve some time outs while I check my BG or eat something for a low or go home for more insulin.  It will, because I can’t possibly prevent every little thing from derailing my best intentions or plans… so I don’t try to.  I just do my best and forgive myself if and when I screw it up.

I’m glad I have, and I wish for everyone reading this that you have, too.  Life is simply too short to spend a moment of it waiting for someone ELSE to do something YOU need to be doing.

Embrace your life.  You’ll be glad you did.

Everyone around me, it feels, is discussing going back to school with diabetes, or going away to school with diabetes, or some such topic.  I know the underlying goal of many of them is to re-energize people to take care of themselves despite life upheavals and changes like heading back to school, which is a great idea.

I’ve seen some comments this week that mention being embarrassed by diabetes.

I get it: we often need an extra moment or two to check our BG, or have to go back and grab our meter or make a pit stop for juice if we’re low.  Or, we’ve got a lump on our waistband or arm where our pump is doing its thing, or we have an unsightly bruise from a shot gone wrong.

I want to refuse the notion of being embarrassed by any of that.

Has it been that long since I was embarrassed?  Or is it more that I’ve never really felt too embarrassed by my disease?

Maybe both.  I know in my head that junior high and high school were decades ago (caught sight of my elbow skin yesterday—no denying my age there), but I hold in a special place the anguish nearly everything caused me.  It’s funny to actually write, but I know I learned a lot of very important things then.

An example: no one else is looking at the hem of your pants.  A half inch one way or the other isn’t really going to matter.  Caveat: don’t wear white socks and black pants.

It pains me to think about anyone feeling embarrassed by their diabetes.  I don’t think my own shunning of my disease through those years was embarrassment—it was more denial than anything—and I really really don’t think there is any part of diabetes that should cause embarrassment.

Granted, some people who don’t have diabetes can say things that make us take a step back.  “EWW!” or “I could never do that” or “what IS that” all come to mind.

But internalizing thoughtless comments is simply misplaced when it comes to life with diabetes.  That’s all there is to it.

You can choose to educate in response to a comment, or you can choose to hide your diabetes in an effort to avoid them altogether.  (Trust me, that one is a bad idea.)

If you think you are embarrassed by your diabetes and are making an effort to make things easier on other people by “not being a bother” to them, you are not taking care of yourself.  Simple as that.

I make my running partners stop so I can eat all the time.  Is that my preference?  Nope.  Do they seem to mind?  Nope.  Do I think some part of them thinks “glad I don’t have to juggle that!”?  Yep.

So, the next time I hear a thoughtless remark (which I know is just a matter of time), I want to come up with some good retorts. 

An old standard: You’d die if you didn’t.

A quick one to shut them up: It isn’t my CHOICE to have diabetes, but I do choose to take care of myself.

Simple and to the point: It’s my insulin pump; I have type one diabetes.

Short and truthful: It’s hard, but it’s doable.

Got any more ideas?

I’m trying a new infusion set today (this Mio thing is so teensy!).  It just reminds me how many different things I’ve tried with my diabetes—some have worked, some haven’t.  It’s personal preference, but I do think it is important to be open to new things.

I mean, I started out taking NPH and R in 100cc syringes twice daily.  If I hadn’t been open to trying new things, I’d still be there!  (True story; I met someone still on that regimen a few years back who had never heard of long acting and rapid acting insulin. Oy.)

People and companies are coming out with new diabetes things every day.  New tools, new gadgets, new approaches, new strategies.

These are all very good things, if one is willing to let go of a little control and try something new.

I remember hearing about this new-fangled insulin called Humalog.  H. I remember convincing my doctor I should try it out in my insulin pump.

I shake my head at the thought now (here sits this 19-20 year old who my doc should know doesn’t check her blood sugar and who has been on a pump for less than a year trying to get the doctor to prescribe something that works much differently than the standard used at the time…and she did it! She gave me the insulin! Yikes!), but really, it’s a very good thing to stay somewhat informed and willing to see what works for you. (I myself can’t stand reading something new about diabetes every day… it’s in my head enough as it is.)

Granted, I’m a very stubborn person who hates (H.A.T.E.S.) change, so why would I try to be flexible with my diabetes?  Doesn’t it work better if we all stick on a schedule and try to do the same thing at the same time every day?  (Scar tissue comes to mind as a good reason to switch things up…)

Well, because for me, my life works better if I have more flexibility than that.  I can’t stand eating the same thing for breakfast every day, much less lunch or dinner!  And with a husband who works different hours every day and different days every week, flexibility is sort of a must in my house.

And you never know what you might find out.  It’s important to interact with other people with diabetes and to talk about what works for everyone else.  We are all such Diabetes Detectives, why not share what we’ve learned works and doesn’t work.

Change your site locations. Use your arm, or your butt, or your hip or abdomen.  Don’t change your lancet until it hurts.  Change it every morning.  Try eating a GlucoLift tab, or a spoonful of honey.  Ask for sample infusion sets you’ve never used.  Talk to your doctor about the newest insulin and what is coming down the pike.  Pick up a diabetes magazine while you’re at it, and thumb through the ads at the back.

See what’s out there!  You never know what you’ll find.

I’ve had some comments appear in my various inboxes over the past few years about how unusually positive Diabetes Outside is, by comparison.

I appreciate that very much, yet at the same time get frustrated that somehow positivity is unusual in diabetes circles.

(I’m not altogether all that more positive than anyone else I meet, either, by the way.  I just don’t let negativity slow me down or give me any excuses; if you’ve been here for any time at all you’ve probably seen I have a fair number of rants!)

I am not super sure I should be writing about this particular topic, as it’s definitely one close to everyone’s heart, but I feel like I’m avoiding it if I don’t discuss it at all.  Can’t have that.

It absolutely KILLS me that in a Diabetes Daily poll the other day asking people what their predominant emotion is about their diabetes and their future, the majority of people answered “fear.”

Followed by “worry.”

Together, fear and worry represented 56% of the people who answered the poll.  Fifty-six percent!

This may mean I don’t sleep well tonight.

At the bottom of the poll, 3% of the respondents answered “hope” is their prevailing emotion when they think about their diabetes and their future. 

Only 2% answered: acceptance, optimism, faith.

Those options didn’t even make the cutoff on the display screen!  Wow.

This means that at least half of you are still in the shadow of that monster.

And you know what?  If you are, I think you are selling yourself incredibly short.

Listen, I’m the last one to tell you it’s easy to accept diabetes.  I’ve worked at it, and will probably continue to work at it the rest of my life.  Diabetes isn’t an easy thing to do.  The disease carries with it an enormous responsibility and not much of a cushion for mistakes.  You don’t get to take a day away… it’s hard to even take a few hours away from calculating and figuring and planning and talking and thinking.

This is why I think acceptance is just so much easier than anything else.

Because the thing is?  You stop TRYING to get away from it.  You see diabetes isn’t the worst thing in the world.  You don’t feel like a failure before you get up in the morning simply because you have woken up in the shadow of a monster.

Calculating and figuring and talking and planning become “self” instead of “alien”… you stop fighting and noticing you are different than someone who isn’t calculating or figuring.  (Let me assure you, they’re busy doing something…something you probably don’t understand, either, just like they don’t understand your disease.)

I want you to work at accepting your life with your diabetes.  Let the monster go.

You’ve got better things to do here.