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.
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.
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.
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.
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”.
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.
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.
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.
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.
there you have it…Our personal, no
formal training, just real life experience, advice list.
Hurricane Bill hadn't yet started as we dipped the wheels of the Norco tandem we baptized Diabetsy into the waters of Halifax's Point Pleasant park. It was cloudy, mild but no rain yet as we prepared to head out at 6 am that late August Saturday morning. The ride that was about to begin was the first edition of the Cyclebetes national relay. The year was 2009.
I was the first on the tandem that foggy morning and my stoker was Alex Bates. I knew of him before, but had technically really only met him the day before at the hotel in Halifax. The very first thing that I noticed with Alex was his upbeat, always happy attitude. He was excited about the adventure that we were about to embark on and so was I. His passion for life was contagious and I couldn't help but think that it always seemed that he was living on borrowed time. Once I began to know him, I realized that he actually was. We hit it off immediately given our shared passion for mountain biking and there was also the Type 1 Diabetes connection. Alex was diagnosed shortly after birth and he had really struggled with it. He had endured eye surgeries and was on dialysis in his early 20s. It didn't take long to realize that this dude was tougher than I'll ever be.
His enthusiasm on the bike was evident, especially in the force with which he pushed on the pedals. It almost felt like someone was pushing us from behind on the tandem. It was a pleasure riding with him feeling like it really was a team effort. Even with his young age of only 25 years, it felt like I was talking to someone much, much older than me. He was noticeably wise well beyond his years.
I remember him talking about his kidney / pancreas transplant that he had undergone a few years back and how it had literally given him his life back. He no longer needed to be on dialysis and the insulin producing islets in his new pancreas were also fully functional maintaining normal blood glucose. He told me that for him it was as if he had been cured even if he now needed to take very strong immunosuppressant drugs to avoid organ rejection. I can't quite describe how excited and alive he looked when he was telling me that. I will never forget that. It truly was incredible.
Last Sunday, Alex Bates passed away accidentally in a motor vehicle accident while riding his motorcycle, doing what he truly loved. In the end, it wasn't his Diabetes that took him away like I'm sure so many thought would. I can't help but think of the role that JDRF research played in making the last 5 or so years of his life quite possibly his best. Without JDRF funded research, his pancreas transplant would simply not have been possible. It's very comforting to know that the money that I have raised for JDRF has literally enhanced treatments for Type 1 diabetics like Alex and so many others. I've often thought about it, but I can't really imagine how we're all going to feel once the "real" cure happens.
On Saturday, September 7th, I will be riding my bike 200 kms in honor of Alex Bates feeling grateful to have spent those 4 days with him during the 2009 Cyclebetes relay ride from Halifax to Quebec.
Please support me if you can...
the Mike’s Bike Shop Cyclebetes 200 ride to cure Type 1 Diabetes just around
the corner and lots of new faces beginning to sign up and fundraise, I feel the
need to tell our story.If your life has
also been touched by Type 1 Diabetes, I’m sure you can relate since your story
is surely similar to ours…
the fall of 2002, Adele started showing signs that something wasn’t quite
right.At such a young age, she couldn’t
tell us how she was feeling, but her unquenchable thirst and frequent high
volume urination could no longer be ignored.On Halloween night we got the diagnosis – Type 1 or Juvenile Diabetes,
an unpreventable, chronic disease caused by a malfunctioning immune system that
mistakenly destroys the body’s ability to produce a hormone called insulin as
well as the body’s ability to manage blood glucose concentration in the
doctor explained to us that the treatment is lifelong insulin therapy without
which Adele would die.All Type 1’s must
inject or infuse insulin to stay alive.Insulin
cannot be administered orally.Type 1 or
Juvenile Diabetes cannot be reversed or cured.Insulin is not a cure.It simply
prevents extreme hyperglycemia and ketoacidosis which eventually causes death
in a matter of days.Insulin does not
prevent long term complications.
at least the first year, it took at least 2 adults to give Adele her injections,
one to hold her still while she kicked, cried and screamed and the other to
administer the injection.At the time of
diagnosis, we couldn’t leave the hospital before both my wife and I were
comfortable giving the injections.It
took almost an entire week to be able to find the courage to shove that needle
into our baby, but in the end we just wanted to go home.I think each injection hurt us more than it
come a long way since that day in 2002, but we’re still a long way from how it
was before the diagnosis.Adele needs to
constantly monitor her blood sugar levels.And by constantly, I mean pretty much hourly every single day including
her birthday, Christmas… and even through the night.The thing is that almost everything affects
blood sugar including stress, fatigue, excitement, a virus, exercise…etc…It’s not just food intake, it’s also pretty
much everything else as well.A
non-diabetic’s body is constantly making tiny adjustments to maintain blood
sugar between normal levels.For a Type
1 diabetic, these adjustments need to be made manually by the diabetic or the
caregiver.All this work and you can
still never keep blood glucose values in the normal range at ALL times.It’s just not humanly possible.
I really enjoy blogging, but lately the time and energy to do so seem to be slipping away...
During a bike race or a group
ride, you’re sitting comfortably in the pack.The pace is not easy, but you seem to have managed to hide enough from
the wind, following the best wheels to make it seem that way.You struggle a tad up the hills, but when the
road levels out again, you’re able to recover and maintain contact with the
pack.The illusion created makes
you feel like you can keep this up for the entire duration of the ride or race.The level of suffering is bearable and almost
seems normal after a while.The legs
seem to spin the pedals automatically until they suddenly don’t.You try to concentrate harder on the task at
hand, you dig deeper to try to hang on, but deep down you know your time has
come.You’ve been dropped.You look up to see the rest of the pack ride
away.They’re not attacking, the pace
hasn’t changed, it’s simply your legs that have reached their limit.You’re done.I mean, you can still ride, just much slower now.If you’re a cyclist, you know the
feeling.Complete exhaustion.You try to eat or take a drink of water to
turn things around, but the feeling can’t be fixed.The only thing to do is finish the ride or race at
your own crawling pace.
After our Type 1 odometer
rolled over the 10 year mark last fall, that’s basically how I have been
feeling.In this Type 1 game race, I’ve
been dropped.The energy and enthusiasm
that I once put into Type 1 awareness and fundraising just doesn’t seem to be
there anymore.The effort turned out to
be unsustainable after a while.I really
don’t like it, but it’s still how it is.In the end, the legs (or body) have the final say in getting dropped
even when the mind is still committed to hanging on.
So that’s where we’re at.I understand that we still mostly don’t
really know what we’re doing even if by now we know exactly what we need to
do.We have also learned that textbook
Type 1 math is always a simplified version of it’s practical application.The goal is always independence.Adolescence, a first step towards this goal
has given us more breathing room, but also more time and things to worry about.
Type 1 gaming is so much more
than needles and numbers.The
psychological aspect of Type 1 gaming is likely the biggest part even if it is
sadly the most overlooked.
On Saturday, September 7th, I will again be riding my bike 200 kms during the 6th annual Mike's Bike Shop Cyclebetes Ride to Cure Type 1 Diabetes. If you can, please help us reach our goal of $20,000 raised for Juvenile or Type 1 Diabetes research by clicking the Support me! button on the page below and making a pledge.
matter how my frozen brain cells analyzed the situation, the common logic conclusion
was always that I should pull over, get off the bike and hop into one of the
warm and dry support vehicles.I was
recognizing many symptoms of hypothermia and my constant shaking was really
making it unsafe for me to be riding a bicycle.It was about 10 degrees Celsius and I was literally soaked to the bone.One of the things that cycling has taught me
is to be able to endure a certain level of discomfort, but honestly, I had a
difficult time thinking of a time when I was more uncomfortable on a bike than
at that moment.Like I have done many
times before, my answer was to literally attempt to ride away from the
problem.I just needed to go
harder.After a few minutes, the extra
workload seemed to bring up my core temperature and I stopped shaking.I was not comfortable by any means, but at
least I was no longer fearing being hauled off in an ambulance because of a
dangerously low body temperature. The
day before the ride was such a beautiful early fall day.It was sunny, not too warm with no wind.70 riders were signed up to ride and I was so
next morning, Saturday, September 29th, we woke up to cool temps and
heavy cloud.As soon as I pulled into
Mike’s Bike Shop, a light rain started to come down.It was 8 degrees and the forecast looked quite
wet, but riders just kept rolling in.In
a way it was the perfect analogy to Type 1 gaming.No matter how much planning you do, there are
still some uncontrollable factors that can and do mess with your perfect
plan.Just like the crap weather we were
facing, high and low blood sugars, bad infusion sets just happen.It’s just a Type 1 game rule… The
early group rolled out at
with the main group leaving about 30 minutes later.It was cold.It was wet.It was very
uncomfortable.I was chaffed in areas
that I sincerely did not think possible on a bike ride even after a lifetime of
riding.Enduring such pain as a group
like that, especially for a reason like helping finding a cure for Type 1
Diabetes creates a kind of bond amongst the sufferers.A situation like this really teaches you what
you’re made of.The grit and
determination of some riders really surprised me.200 kms cycled in one day with close to 2000
meters of climbing is a challenge in itself, but really tough in these conditions.For me I believe that in a way it was easier to find the courage to keep
pedaling given the whole reason for the ride, but for many without a personal
connection to Type 1 Diabetes, they must have had to dig a little deeper to
find the motivation to keep spinning the pedals.I personally have the utmost respect for all
who completed the entire distance.Congrats to the riders who made the finishers list…Honestly, congrats. Most
riders, including myself, deemed the ride as the “hardest day on a bike in my
life”.One of the things that I love
most about cyclists is their positive attitude.You organize an event that turns into a near-death experience and the
riders don’t bitch or complain…They
thank you. After
all the math, $19,479 has been raised and donated to JDRF in search for a cure
for Type 1 Diabetes!!That’s over $4,000
above our initial goal of $15,000. From
Adele and all other Type 1 gamers out there, I would like to personally and sincerely
thank everyone who made this happen!Thanks
to all participants and to the sponsors: Mike’s Bike Shop, Arcteryx, Giant
bicycles, Terry Tomlin, Cycle Lambert, Sock Guy, Simple Signs and Dieppe Rotary
club as well as all who donated including Pablo Vergara for all his help and
for sacrificing his dignity and hair for the cause… THANK
Disclaimer: The information contained in this blog is for informational purposes only and should not be considered to be professional medical advice whatsoever. I am not a doctor and do not have any formal medical training.