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Diabetes For The Day.

Working in a diabetes company means understanding the culture and responsibilities of a person with diabetes.  This is easy for me, because I'm a person with diabetes.  But not everyone at work is living with diabetes.  My fellow employees work with diabetes every, but they don't live with it. 

People at work have taken a very active interest in becoming more familiar with the diabetes lifestyle - more than just understanding the "facts" of this disease.  They ask questions about the pump, or different insulins, or what a CGM does.  They ask how things "feel."  One of my co-workers decided to have "diabetes for the day," which included him testing his blood sugar several times and wearing a pump infusion set (minus the cannula - just stuck to his abdomen for "the feel" of it) attached to a makeshift "pump."  He spent the day thinking about carbohydrate intake, blood sugar results, and the constant presence of a device, in efforts to better understand the community he's trying to help.  Here's his feedback:

Kerri:  How did testing your blood sugar affect the way you thought about food?

Co-Worker: 
I'd love to say that I'm a changed person and that I look at the world through different eyes having worn the shoes of someone with diabetes for a day.  Truthfully I think it was the inconvenience pain of testing that caused the greatest hesitation and re-jigging  for me.   The event that caught me most off guard was when I returned home from work and passed up having a cookie before dinner.  My inner dialog went something like,  "Mmm cookies.  Wait, I'd have to test first.  Kerri said I had to test before eating anything.  Hmm.  I'm going to be eating dinner in an hour so I'd probably have to test twice.  BUT.  If I have it with dinner, I can test just once ... I think I'll wait."

I have to say, all those fake sugars [note from Kerri - he's talking about artificial sweeteners] are really yucky and drinking mostly plain water is no fun.   Give me my plain sugar in my coffee.  If I had to inject insulin (saline) I think it might have really changed the way I thought about food because it would have forced me to do more calculations and understand what I was putting into my body (both the food and the insulin).  With just testing, I only had to make simple yes/no decisions.  Maybe next time I'll get wired up for a pump.  Shooting actual syringes saline ... am I getting paid to do this?

Kerri:  Did you ever feel inconvenienced by the presence of the meter or the "pump?"  How so?

CW: 
Having the meter/pump on my belt wasn't too conspicuous as I think it looked a lot like a geeky cell phone belt clip.  (And I'm pretty geeky.)  However, I did almost drop it into the toilet once.  Unlike a cellphone, it's wired/tubed to me which created a bit of a juggling act and not one you're likely to see at the circus.  Thankfully all my years of playing frisbee came in handy and I was able to prevent a very embarrassing accident.  (Since it was just a meter it wouldn't have been too costly.)

I also think that if I wasn't at a place where we talk about diabetes everyday, I might have been a bit more self-conscious.

Kerri:  How did the blood glucose numbers make you feel?  Did you associate any "guilt" to a higher number?  Did any of your results make you raise an eyebrow?

CW:
  Since I knew that my body could "handle" the swings I wasn't too worried and thus not too guilty.  (I had pizza for lunch and pasta for dinner ... and two cookies.  Something that I don't think would be part of a typical menu for someone who was managing their BG.)  I did have some pretty high swings and it did make me realize that keeping your BG within an acceptable range is not a passive act that can be programmed like a thermostat and left on auto-pilot.  There's a constant feedback loop that occurs and I don't think a CGM talking to a pump would be able to easily and reliably handle the delicate balance.  (And that's coming from a programmer.)

Kerri:  Do you feel as though  you have a better idea of what life with diabetes is like?  What else would you want to know?  What are you grateful for not knowing?


CW: 
I think what I experienced is just the tip of the proverbial iceberg.  I was forced to stop and think a few times, but I didn't have to pay the "penalty" of being careless and I knew in the morning it would all be over.  Sort of like playing with tasers without the batteries.  "Don't fake taser me, Bro!" 

I am a bit curious as to what a high and low are like.  Is it similar to being hungover?  Like having a bad flu?  Is it worse than a papercut between the fingers?  (I really hate paper cuts.  How can something so small hurt so much?  I'll inject saline before getting a papercut.)  The insulin pump is still very intriguing to me.  Can you feel the insulin going in?  Can you "feel" your BSL/energy change?

No amount of simulation will ever help me understand what it's like to not be able to just disconnect.  There is no vacation from diabetes.  It doesn't sleep when you sleep.  I can't even imagine that.  Even as I type this, the concept is so foreign to me.

Kerri:  Did this experiment make you appreciate your health any more?  Less?


CW: 
I've been very fortunate and have been very healthy all my life.  I have my scars and stories, but overall I can't complain.  I don't think the experiment changed how I thought of my own health.  I think I appreciate how amazing the human body is to keep everything working properly, but I don't think I'll change any of my habits as a result of the experiment.  Don't get me wrong.  I'll continue to watch my weight and try to eat healthy food.  (I haven't been to a fast food joint, except to use the bathroom, in over 15 years.)   But it's about my general health and well being, and not specifically as a way to prevent type 2 diabetes.

The experience will stay with me longer than the lancet marks on my fingers, but I would not classify it as life-altering.  Something well worth the time and I'd recommend that other participate in the experiment.

Comments

Very interesting experiment, Kerri. I guess we're just so accustomed to the things we have to do to stay alive, we don't even think about what it would be like to not have to do them. It's interesting how much the routine impacted your coworker's day, even though he already had a deeper understanding of the disease than a lot of the general public. I wonder what would happen if a real "outsider" took on the challenge?

That was fascinating. I really enjoyed reading his insights and observations, and the things he'd still like to know / feel.

In moments of frustration, I've been know to tell my husband that I wish he could live with diabetes for a day, just so he could understand how I'm feeling. Of course, I immediately feel very guilty. I love him way to much to want him to live with diabetes for even just one day. Well, live with it more than he already does being married to me!

I would love to see his BG results. I still find it so hard to believe that people can eat a lot of food and top out at 90- 120. I guess it's still hard to see myself as not normal.

Harry - Thanks for stopping by! :) I'd like to see a "real outsider" take this challenge. A few other people in my office are doing this next week. I'll definitely post the results.

Karen - I know what you mean. I wish I could protect everyone from these feelings and have them understand, all at the same time. :)

Mandy - Posting his results below:

6/26:
6:10 am - 106 (fasting)
8:00 am - 108 (before breakast)
10:20 am - 127 (after breakfast)
12:35 pm - 106 (before lunch)
3:00 pm - 168 (after lunch)
3:05 pm - 170 (double check)
8:10 pm - 112 (before dinner)
10:45 pm - 191 (after dinner)
11:45 pm - 181 (before bed)
6:30 am - 100 (fasting)

There are some spikes in there. He said that his hands were clean (and I believe him). The strips expired in May, so that may be part of the issue. (Unfortunately can't waste "good strips" on a non-diabetic, what with the cost and all.) Points to ponder. Another co-worker is doing this on Tuesday, so we'll see if her results are different, and we might use my meter to compare once or twice. :)

How cool... I did a similar experiment a few weeks back and blogged about it... it's not really the same as being diabetic, but I think it's still a potentially powerful exercise to pause and think about life in someone else's shoes for a moment... gives you a different perspective and helps you appreciate how all-encompassing and life-altering diabetes is... I am amazed at the grace with which my young nieces and others, like Kerri, handle this chronic disease.

thanks for that, Kerri (and co-worker)! It was very insightful and interesting, and I'm linking to it on my blog. :) This is something I've thought a lot about since I was only dx'd last October (I was 19), and I didn't know much about it before then. I actually have a post on it in the works but its kind of a rant so I'm saving it for another day...

Thank you SO much for this Kerri. Kudos to you and thank you CW!!!!

Sometimes just a little empathy from an "outsider" goes a long way. Validation is so important to any human being. Anyone who has a chronic illness seems to "need" it more. It does wonders for the psyche. ;-)

And sometimes an opportunity to help someone get a basic glimpse into a T1 Day goes even further than empathy or understanding (which is truly impossible unless the person has T1)...

Thank you again. I so look forward to the results from next Tuesday.

You Rock Kerri.

oh, hey, definitely do a real insertion and put saline in the pump. Part of the fun of diabetes is sticking Non-d's with pointy things. What we do at our house is get a big honking silhouette infusion set and tell everyone THIS will be stuck INTO you, just like Ian does and watch them squirm. Ian thinks this is a riot. Before he pumped my dh and I both pumped saline for a few days. Just to see - we couldn't really say "hey Ian wear this thing, it won't hurt" without knowing what that was like. and everyone in our family gets a bg check now and then.

What a cool experiment. I would LOVE to have my family members and friends take this on to "get" me better.

Hey Kerri!
I'm sorry to hear about the diabeties.. n I usually don't meddle much in other people's affairs.. but summin just provoked me to send ya this link.. a movie 'the secret'.. watch it please if you haven't already. I'm glad to know that you're successfully fighting it.. but I'm a lil' bummed to read that it has become the focus of your life and so many of your posts.

http://www.youtube.com/watch?v=_b1GKGWJbE8&eurl=http://zen-and-art.blogspot.com/

This has changed my life and I'm positive that it works. It might just help totally cure it. Focus on good health not bad health.

Hope you keep smiling always.. :)
love,
Palak.

I think that it is great that someone in your office did this! As a parent of a type 1 I am always trying to figure out how everything feels. My biggest questions in life these days are really about how highs and lows actually feel for a 4 year old.

We just recently started on the Omni Pod and both my husband and I tried the pod on and went through an insertion. We always try to figure out how it feels for our little Izzy.

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