Tuesday, December 17, 2013

Eleven years and counting...


On the first of November, we began our 12th year of Type 1 gaming.  In a way, looking back, we sure have come a long way.  But on the other hand, some things are still exactly the same.  Below is a list of things learned along the way that I wish someone would have told us when Adele was diagnosed. 

1 – Type 1 gaming is not a sprint.  Even though you really want it to go away and you really want to learn how to manage and deal with it as quickly as possible so that you can get back to your normal life, it just doesn’t work that way.  Type 1 gaming is more like a never-ending ultra-marathon.  Be sure to pace yourself.  The past few years, my wife and I were displaying many symptoms of Diabetes burnout.  Even if your intention is good, a completely burnt-out Type 1 caregiver will be quite useless.  Be careful and don’t forget to take care of yourself. 

2 – You will eventually know exactly what you need to do but will sometimes still feel like you really don’t know what you’re doing.  As soon as you think you have it figured out and that it makes sense, it won’t.  It’s just part of the game.  It never gets easy.  Accept that fact.  I’m still working on this one… 

3 – In many ways the needles are the easy part.  At first it can be hell with young children, but it is straightforward – inject and deliver.  Trying to maintain blood glucose within normal range at all times like a non-diabetic is the complicated and frustrating part of the Type 1 game.  Even with her best (in-range) A1C, given her 10-12 blood glucose checks per day, I cannot remember a day where Adele was in the normal range for the entire day.  I have been trying for years to get a day of normal range blood glucose values at all finger pokes in one day, but it has never happened yet.  This is why insulin is not a cure. 

4 – Although we do not really limit Adele’s carbs (she will make that decision for herself as an adult), I do believe that a low-carb diet greatly improves blood glucose control.  It’s very simple and just makes sense to limit what the body cannot process – carbs.  Just like with food allergies, simply avoid what makes you sick.  I’m really not sure why modern medicine has not connected these dots. 

5 – Support groups are good but be weary of the “super-positive” members.  They usually make you feel worse when they preach how “easy” they find it.  Type 1 gaming is not easy.  Look for support group members who are “real”. 

6 – A1C values should never be compared amongst Type 1 gamers.  Regardless of the number, you did your absolute best given the circumstances so give yourself a pat on the back.  And besides, a low A1C may very well be associated with many dangerous lows. 

7 – Like most things in life, Type 1 Diabetes seems to work in cycles.  Whether you’re going through a streak of easier to manage, good numbers or the opposite, it will always inevitably eventually switch.  It always does.  It’s just the way it is. 

8 – Most people will not understand the Type 1 game and what we go through every minute of every day.  I didn’t either before our number came up in the Type 1 lottery.  Either take the opportunity to educate them and/or move on.  Frustration serves no purpose other than sucking your much needed enthusiasm and energy. 

9 – Use your medical Diabetes support team (endo, family doc, diabetes educator nurse…) for “support”, but try not to rely on them too much.  For better control, I believe it is best learn to make the necessary insulin dosage adjustments yourself.  You will then be in a better position of transferring this knowledge to your growing child.  Besides, unless someone in your support team actually lives with Type 1, you have more knowledge than they do.  You’re the expert. 

So there you have it…  Our personal, no formal training, just real life experience, advice list.

3 comments:

Pierre said...

Well written Mike ... As a Type 1 gamer myself, I sometimes feel like I'm running the last 2 kms of a marathon with no finish line. Until there is a cure, we keep running ...

Anonymous said...

Je vous admire tellement tous les trois. Bon courage avec la suite! Keep Up the good work!
Joyeuses fêtes!
Amitiés, Jeannine

Sarah said...

All so true...and I completely agree about limiting the carbs, but as we say in our house nobody needs that many carbohydrates!
Thanks for being such an honest voice amidst it all. Happy Holidays ;)