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How Do You Advocate When You Feel Like a Schlepper?

(Post title edited, thanks to input from @kelsse.  :) )  I had a conversation with a fellow PWD a few weeks ago.  She was leading a support group for younger girls with diabetes, but she was having some trouble feeling in control of her own diabetes.

"I've been like 260 all day long.  It's hard to feel like a good role model when you're in such crap control.  I don't feel like a very good advocate these days."

And her comment stuck in my head and rolled around in there like a bingo ball for about two months.  This morning, as I was testing my blood sugar before heading downstairs to make a bottle for the BSparl biscuit, it dawned on me that her question is probably one that every patient blogger struggles with at any given time.  How do you put on a brave face when you feel like your disease management is in a tough spot?  How do you tell people to take control of their own diabetes when yours is roaming around unsupervised?  How do you advocate when you feel like a schlep?

For the last week and a half, I have been a walking diabetes disaster.  I'm still wearing the pump and the Dexcom and I'm aware of my disease, but I'm not managing it.  It's managing the hell out of me, though.  I'm not proactively nailing down any blood sugar trends, but instead am chasing random highs and lows that I KNOW have a pattern somehow, but I haven't motivated myself to really plot the numbers and find their rhythm.  I can count my daily finger sticks on one hand (pun sort of intended).  Overall, I'm treading water instead of making real progress towards actually making changes.

How many times can I say "Tomorrow is a new day"?  I feel like I've been singing the same tune for weeks now.  Is this a patch of diabetes burnout, brought on by diabetes obsessiveness in pursuit of the healthy pregnancy?  Whatever it is, I'm definitely in it and having a very hard time getting myself out.  The problem is priorities.  I have myself fooled into thinking that taking care of the baby, unpacking the house, and continuing my consulting work is more important than diabetes management.  What I fail to forget, as I make my to do lists every night, is that without good health, all the other stuff isn't ever as well done as it should be.  My health needs to come first.  Not last.  Or second to last.  Or finishing somewhere in the bottom five. 

It's hard to come online and admit these things.  I wish I could say that I had the baby and then bounced right back into fantastic control and excellent health.  But I'm struggling.  A lot. It's frustrating and I'm overwhelmed.  I don't make a habit of lying to you guys.  So even though I am trying to make changes, I'm feeling challenged. 

"I don't feel like a very good advocate these days," my friend had said that day.  But what makes her a good advocate is that she tries.  Every day.  And that's what makes the entire diabetes online community such a strong and honest source of support.  It's not comprised of a bunch of people with "104 mg/dl" winking back at them on their meters and a plate of chicken breast and baby spinach leaves smiling in low-carb contentment.  We're a bunch of real people writing about our real experiences with this disease.  And I'm so glad for that because I'm looking at string of several rotten diabetes days in a row, all lending themselves to settling in my brain and making me feel defeated.

You guys make it easier to dust myself off and get back on the wagon.  (Even though it is speeding by like the Acela.)  It's hard to advocate when you feel like a schlep, but it does feel good to be honest.  Honesty helps fuel advocacy.  And it also helps to be supported by people who really get it.  When this community helps lift us out of our respective diabetes burnout phases, it makes all the difference. 

... coffee helps, too.  ;)

Coffee does help.  A lot.  Like a freaking ton, actually.

Comments

Amen sister!! Just got back from a workout because I too have been struggling. The increase I needed in basal has the scale saying 5lbs up in 10 days! My mantra today is "slow and steady wins the race" I'll be thinking of you and this post as an inspiration.

As a newbie to the world of T1D, I think I benefit from seeing a lack of perfection in my role models... "Role model" being generally defined as "someone who has been doing this longer than I have, cares about their health, and leads a pretty happy life."

I'm GLAD to know that it's not "just me" when my blood sugar goes out of wack... whether it's because of someone I did wrong or because diabetes just likes to screw with your head once in a while, I know it even happens to the people who have a lot more experience than me. I don't beat myself up as much as I might otherwise.

So true and a constant struggle. It's hard to feel the "I can do it!" feeling while you are hovering at 250+ and have to pee every 45 minutes.

I can definitely understand if you're feeling some "diabetes fatigue" after being all over it since before BSparl was conceived. It's really hard to keep up with all of that so militantly (not speaking from experience, but as the spouse of a PWD who sees a lot of it). It must have felt like a vacation to not have to worry about being pregnant or breastfeeding. Your body is yours again finally! I know that you'll get back on the wagon and get yourself right in no time.

Ditto, sister (:-)

Feels good to read this today, after 1.5 weeks of truly piss-poor control, planning and maintenance. Thanks, K.

Honestly I think you advocate for people with diabetes when you're at your worst because you're admitting that people with diabetes are human. We struggle. We fall; we get up again. Sometimes we just wave at the Acela as it goes by, and sometimes we're at the station waiting. Being able to share even the bad times with the world is what being an advocate is all about.

I could have written this post, substituting T2 and the surgery messes, of course. When you mess with female hormones, no matter how or why, it does no good for women with diabetes - no matter how much attention is being paid to it. In my own situation, GYN says six months (SIX MONTHS???) until hormones get back to normal after surgery #2.

I do agree that advocating includes telling the "real" stories of emotional and physical highs and lows.

I know how you feel... again! Hence the lack of blog posts over the past several months. Although, I need to remember WHY I started blogging in the first place: to get back on track... or I guess to just FIND a track! It definitely helped me there and maybe I need to kick it up again, because my self motivation is getting bogged down with diaper changes, bottles and lots of play time!

Always remember, too, that we don't expect you to be super human, we just expect you to be YOU, and we all struggle at times. If we didn't, there would be no need for this wonderful Diabetes OC; we find common ground not only in our successes, but in our struggles, too. I know this diabetic couldn't ask for a better diabetes advocate!! I am proud to have you fighting for and representing me!

Oh yeah... and coffee helps EVERYTHING!

I am so right there with you. I've been without my CGM for almost 2 months now and feel like my diabetes management is on a downward spiral. I am patiently waiting for my new CGM to be delivered today, I feel like with this tool I can do what I need to, to get back in control.

So true Kerri. The reality is that aiming for that amazing diabetes control takes a massive amount of work. When we were trying for a baby I tried to be PERFECT, it burnt me out. When we stopped I did take a few months that were less than perfect after that. I just couldn't face carb counting or beating myself up over the numbers. It's very hard but as long as you try you can't be too hard on yourself. You have to pat yourself on the back for that. As we all know this disease never stops and neither does our management of it, it's overwhelming. Hang in there and be proud of what you did today.

Once again, you have written down exactly what I often feel... except more eloquently than I ever could :)

It's so easy to expect ourselves to live up to the amazingly easy diabetes image that is prescribed by most doctors/society/everyone. I work at a d-camp, and one of my roles is to sit down with kids targeted as "mismanaging" and relate to them... to make them see the importance of truly making a strong effort to manage diabetes everyday. But a good... 30% of days, I would say, I don't even feel like doing that- and I like to think I'm a pretty motivated person.
It is always hard to keep in mind that that perspective does NOT make me a hypocrite... it does NOT make me a "bad" diabetic... it makes me human. And even more relate-able at that!

You are an inspiration every day- even if you're feeling burnt out or not necessarily in the best diabetes place. It's the effort that counts- even when that effort isn't yet in the form of more blood sugar checks/dexcom trend analysis/insulin ratio modifications... but is more in the form of an internal knowledge (expressed via blog) that getting back on track is important.

Hey there - I think you are advocating right now, by being completely honest that sometimes, diabetes has a hold and can take you down sometimes. That to me is advocating - for honesty, for not feeling so alone. It's the people who are all sunshine, rainbows, flowers and oh yeah, unicorns, who are to me, NOT advocating for the day in and day out person with Type 1.

Every day you are an inspiration. Every. Single. Day.

Echoing the sentiments of everyone else....right there with ya and thanks for being so honest! It IS overwhelming after you give birth. 2 1/2 years later I have yet to get back to a consistent exercise routine and my basals reflect that! Sometimes I just don't have the energy to focus on my diabetes when I have to focus on the needs of my toddler too.

I echo what a lot of other people are saying.....you are still advocating when you admit that times are tough! Because you're embodying the reality that diabetes is a constant challenge, and that it's NOT all easy and perfect. Every married person gets pissed off at their spouse, every parent wants to yell at their child sometimes, every employed person goes through spells when they don't like their job....and every diabetic has times when their blood sugars suck and their d-management isn't where they want it to be. So we understand! And I think (hope) I speak for everyone when I say that we DO want to help shove you back on that wagon-- you and any other PWD out there who's having a tough time. And we can only do that if we know that you're feeling the defeat and burnout. So thanks for being honest, thanks for being real, thanks for advocating, and I hope that your post today is the handrail that helps you climb back on the wagon...or the Acela!

Kerri, I'd venture to say that MOST of us d-bloggers have a lot of times we are completely out of whack. I think that's really the point of blogging. To get it out there and have some sort of accountability. I've been having problems myself lately. And burnout happens. And stress happens. And LIFE happens. One thing I always love about your blogging was that you are honest. Good and bad. So you just keep blogging and keep trying and we'll all figure it out along the way. :)

Kerri, this QUOTE of yours is Awesome:

"What I fail to forget, as I make my to do lists every night, is that without good health, all the other stuff isn't ever as well done as it should be. My health needs to come first. Not last. Or second to last. Or finishing somewhere in the bottom five."

This is a REAL post ~ both positive, and YES-negative, and real for Type I Diabetes. Our HEALTH COMES FIRST, & WE ARE NOT NORMAL to fit perfectly into society.... & we should not be judged by others when we strive to keep our health at the expense of other parts of our lives.

I am a long standing Type I, and I was told I was wrong for doing just this ("Looking after my Health when compared to Working") by antother Type I who I loved & cared for. We really need to better support & ADVOCATE for our fellow Diabetics... even when we may not always agree to the subject of your post, today...

I know I prefer having a role model that is human and can show us the bad stuff along with the good. I don’t have kids but I imagine that it would be very hard for a mother to put herself before her baby, even if it is taking care of her health. Have two cups of coffee – you deserve it!

Thanks Kerri for this post. As a mother to a 10yr. old diabetic, I too get burnt out on spotting trends, and keeping her in a more normal range. I feel guilty when her bs in higher than it should be. I'm thinkin I should've been able to avoid that. It's not a fun game we have to play, but it is a game that we MUST play. (unfortunately)
Hang in there. I know you'll bounce back and get to feeling better!

This is why you're my hero. And a lot of other people out there. Keep that in mind, because if you were someone with perfect control, you wouldn't deserve that title (as strange as it sounds). You make me realize that my random 227 before dinner tonight is ok. Thank you, for everything :)

I think your honesty is what makes you a wonderful advocate! Life is not always rainbows and sunshine. (too bad, huh?) I sometimes wonder the same thing - how can I advocate for my daughter when I'm MAD, when I'm tired, when I don't know what to do to get her numbers in range, when everything I've tried isn't working, when I don't have D myself? All I know is that I'd do anything to make her life better, easier, healthier. What mommy wouldn't do that for their baby girl? It's just that for me, that includes advocating. Great post!

You are an advocate. An advocate of truth of living with diabetes.

The truth is that we cannot be perfect everyday.

We can only be advocates for ourselves to do our best and encourage others to do the same.

Interestingly enough, I think this applies to a lot of people and situations. "Fake it till you make it"? :) It is important to check ourselves, but to always accept perfection just ain't there. Right? I think you're awesome!

Thanks for being so honest Kerri, it was exactly what I needed to read and exactly what I am struggling with! I am a healthcare provider and CDE and a T1D and it is so hard to encourage patients to do the right thing when my own sugar is teetering on 300! Life always seems to get in the way and the quote about health being number one is going on my fridge! Thanks for writing what I have been unable to vocalize!

I am a mom to newly diabetic daughter. I hate when her numbers aren't where they should be. I feel responsible even though I know teens are hard to manage. It is one thing if I want o skip exercising or eat too much one day but how can I let me daughter slack off. It is a difficult road and we all have to give ourselves a break once in awhile. Keep up the good work and you'll get back on track. I am glad I have found your blog.

If it weren't for the DOC and people sharing their true experiences, I would definitely feel alone is this daily struggle. Thanks again for sharing!

Thank you Kerri fore this post. After a day getting A1Cs that I know need work I'm feeling refreshed knowing my role model goes through these patches as well. It makes me feel a little less like a "bad diabetic" and more like a PWD in a rough patch.

Thanks for telling it like it is... I have been feeling crappy and guilty about a couple of weeks of roller coaster control... My coworkers and friends think I am a model diabetic, and I am most of the time... but there are times when I just need a break. Glad I am not alone. I really enjoy your funny and practical way of handling life with D.

Your baby was born a day before mine and I also have Type 1 Diabetes. I can't say I read your blog regularly, but every time I do, it seems that we are both in exactly the same spot. It was exhausting to keep on track during the pregnancy but I was able to do so, and I am struggling now as well. Same with the glucose checking.

I started using a CGM a little over a month ago and I feel like it's beeping at me all the time! I have been at 39 today as well as 337 and I'm not really sure there is an obvious cause for either of those! It's especially difficult with the little one - it's nearly impossible to try to make your needs a priority over hers, yet for us it is sometimes necessary.

Just know that there are others who have tough periods, and don't beat yourself up about it, because the frustration just makes it that much harder. Keep up the good work and you (and I) will get back on track! :)

1. Diabetes sucks
2. Sometimes you need a diabetes break
3. Don't let that diabetes break be longer than one week
4. When your pregnant its easier to be a good diabetic seeing how you are also growing a baby
5. You must realize this baby needs you around for a long while so get back to the tight control you had when you were pregnant

I know Keri I have been there myself, being diabetic for 17 years sucks but I want to be around for my kids. With my first son my hba1c was 5 % when he was inutero and then went to 9% after I was done breastfeeding. With my second son it was 6% while baby making and now is around 7.5% But I am holding steady. I wasn't doing so good though and then I decided I needed to test more often, so I set a reminder on my paradigm 522 pump. Thats helped a lot. Also remembering that you did so good when you were pregnant, so just try to put the same effort in. It will get easier. Babies dont need you all the time, they can spare a few moments of crying to bolus, finger poke, and for you to eat.
Its hard, but it will get easier, until they are 2 and say they want the same owie you have. I try and tell my 2 year old he doesn't want this owie.

Thanks for the post, Kerri! I have been following your post for about a month now. I feel the same way, there has been lots of upheaval (moving across the country and starting an intense new job with some 12 hour days). Lately, control has been hard. I even had a 1.6 mmol/L after a work out (scary!). It's nice to know I'm not the only one struggling at this point in time!

Thanks for the inspiration Kerri. My control has been a bit whacky for the last month. I haven't done test basals in quite a while. So, I started today with the dinner last night to lunch today one. Hoping the others follow!
Enjoy your blogs every day plus the pictures of your beautiful daughter.
Thanks again.

Appreciate your honesty....that's exactly what people like me (with no other T1D friends) need to hear. My A1C's have not been where they should ever since the birth of my 2nd child (nearly 3 years ago!). It's rough....thanks for making me feel normal.

"I get knocked down,
but I get up again,
ain't nothin' gonna keep me down"

Theme song anyone??

CHUMBAWUMBA DANCE PARTY!

Kerri, I am so glad I found your blog, and this post was especially helpful for me. Since giving most of the responsability over to our 15 yr old son who's had diabetes since he was a year old, the control has pretty much gone out the window, & it's so hard not to gripe & nag at him!

After reading this post though, I've decided that I'll nag in a more loving way. :)

This is a great post Kerri (I know, I know. I say that EVERY TIME).

What we've got here is honesty, which is exactly what we need. There are so many people out here who don't have it all figured out, and that's Ok, because we keep trying.

We keep trying.

Thanks for this post--it helps me realize that we all struggle--no matter how long we've had this disease. Sometimes I feel that everyone else is on track and eats healthy...and I sometimes can't get myself to do that. But, your blog reminds me that we all have our days or week. Thanks for your honesty--you're such a great diabetic role model!

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