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.
