Friday, March 31, 2017

Fear vs. Information

Recently I was talking to a friend about the girls' diagnosis with Type 1 Diabetes; how being part of 'support groups' for this disease is both a blessing and a challenge.

On the one hand it's finally people who 'get it'.  Those who are living the same turmoil we live. The  same trials and triumphs.  Those that understand WHY we get little sleep most nights.  Those who relate to the fears we have when we see low or high numbers on the Dexcom or blood glucose meter.   Those who watch their little ones gulp a juice in their sleep in the middle of the night -- putting their teeth at risk for cavities, but necessary to save their lives. The ones who feel the same way we do when we get our 3 month 'report card' from the a1c results at our endocrinology appointments.

Yet, on the flip, by being part of the diabetes community we often see the worst case scenarios that CAN play out.  (To be fair -  we sometimes see the best as well.)  However, because these groups are made up of others 'in the trenches' just as we are, it's a safe place to share those fears; worries; the scary moments that others just. don't. get.  Because of that, I'd say the 'scary scenarios' often outweigh the positive ones in frequency.

When I was sharing that I sometimes cry as I'm reading these posts regarding the 'could happen' moments, my friend commented on how one just has to step away so you don't get consumed.  Like a new mom looking up 'symptoms' on the internet and convincing herself that her child is surely going to die because of that rash that just appeared out of nowhere.

I had to ponder that a bit.

Having been married to a type 1 diabetic for over 22 years now, I am ashamed to say that I did NOT know all the pitfalls that this horrendous disease carries with it.  I didn't realize he could literally DIE in his sleep from a severe low. That he could quickly go into DKA and suffer brain damage or death from a severe high blood sugar if left unchecked for just a mere few hours.

So... when she said this... I'll admit, I was a bit put off.  A little confounded by the innuendo that our daughters' very real risk of danger be trivialized as 'just fear'.

I wasn't angry, yet felt I needed to justify my desire -  maybe even my need - to continue being part of these support groups.

Yes, the alarming scenarios can cause you to panic. But... in our case, familiarity with the scary stuff can also SAVE our girls lives.

I understand that my husband did NOT die in his sleep in those 20 plus years, but.... many people have. Fortunately he is what we call in diabetes land 'hypo aware'. Meaning he FEELS his low blood glucose levels as they come on.  They even often wake him from a sound sleep.  Our girls don't possess this ability. Especially in their sleep.  As we've gotten further into this journey they are beginning to 'feel' when they are low during the daytime hours, but usually not until they are 'quite low'.  Granted having CGM's on both girls has helped tremendously b/c we can see their blood sugar levels in real time.  However, it doesn't negate the fact that a fast drop in blood sugar can be missed by both the Dexcom AND the individual's 'senses'.

So... yes, going on line searching for something that is most likely NOT there can consume you and cause you to go insane, but.... being educated about the very real possibilities of high and low blood sugars -- how fast they can change and become dangerous -- how serious they can be and what to look for -- well, in my opinion that's just smart.  It's useful to know what to look for; how to react; how quickly a situation can take a turn for the worse; what helps correct the situation quickly.

Knowing other people's stories has helped me not only learn new tactics, but also deal with some of my own fears of the unknown.

Type 1 diabetes brings with it a lot of uncertainties.

It's a predictably unpredictable disease.

What works one day, may not work the next.  Being aware that such a trend is common helps me feel as though we aren't doing this whole thing 'all wrong'.  It soothes my fears in many ways.  I feel my arsenal is more amply supplied because of the knowledge I've gained by hearing other's tales and situations.

I will admit early on the fear was raw.... consuming.... even close to debilitating.

But now?

Now it's different.

Now I use the 'stories' to empower me.  To strengthen the girls.  To help us keep them safe and secure.  To build our own base of awareness to help keep our girls out of danger.