Cleansing misconceptions

Solo bike rides in the rain are very cleansing. During one of these “cleanse rides”, I started thinking about Diabetes misconceptions. So many blog entries are born during solo rides. Words just flow so much better when I’m out riding. Then I get home and struggle to remember how I wanted to say what I needed to say. Here goes…

Dealing with the many Diabetes misconceptions out there is such an against the current battle. In a way, the Type 2 epidemic is almost a hindrance to Type 1 awareness and understanding of the disease. There are many, many Diabetes misconceptions out there. Here are a few… And don’t feel bad if you believe (or hopefully after reading this post believed) these to be true. The purpose of this post is to educate and inform.

1 - Type 1 Diabetes is controllable with insulin. I remember being told this when Adele was diagnosed and it took me years to realize that it was in fact untrue. To me, the part of this concept that is false is the word “controllable”. To be in control of your motor vehicle means that you can make it go exactly where you want it to go and you can stop it in a safe amount of time if necessary to avoid an accident. If all drivers were in control of their respective vehicles at all times, all accidents except maybe mechanical failures would thus be prevented. Now given this analogy, if Type 1 gamers were able to “control” their Diabetes, all life-threatening complications could be avoided since blood glucose levels could always be within the normal range. That’s not always the case. Even when we do every single thing right, there is always something out of our control that negatively affects this so-called “control”.

Technological and medical advances bring us closer to being able to achieve true control, but we’re not there yet. Getting back to our driver analogy, the control achieved by the Type 1 Diabetic would be that of a drunk driver. Your vehicle is often swerving from one side of the road to the other and the best you can do is try to keep it from falling into the ditch.

I hate it when newly diagnosed gamers are told that Type 1 is “controllable”. I spent nearly 10 years taking this literally and getting down on myself when I wasn’t able to maintain normal blood glucose values. Injected insulin keeps the Diabetic alive, it doesn’t normalize blood glucose at ALL times like in non –Diabetics.

2 - Once you get the hang of it and you get to “know your body”, Type 1 Diabetes becomes easier to manage. It never becomes easier. Eventually, you know what you need to do, but you still never really know what you’re doing. Even after close to 10 years of gaming, we’re really just winging it day in and day out. So, when you ask me if Adele’s blood sugar is going to be okay for a few hours in order for her to do something that she really wants to do, the best answer that I can give you is: “I’ve done everything in my power to maximize the chances that her blood glucose will be within normal range during this period, but I cannot guarantee that this will be the case” or in other words “I really don’t know”.

So there you have it. Two Diabetes myths explained… When you really think about it, the guesswork involved in Type 1 gaming is really insane considering the possible risks.  Then again, I don't make up the game rules, I just try to live with them...

Beyond what you see on the outside

Just because Type 1 gamers don’t look sick it doesn’t mean that they don’t deserve a cure.

As we embark on another year of JDRF fundraising through the Walk to Cure Type 1 Diabetes as well as the Mike’s Bike Shop Cyclebetes 200 ride to cure Type 1 Diabetes, our challenge is once again trying to compete with all of the other worthwhile causes.

There are so many other diseases out there with their images of thin, debilitated victims. Personally, I often think that it seems easier for them to touch our hearts and for us to reach into our pockets to support the search for better treatments and a cure for their ailment. Humans are likely more apt to help those that look sick, the sicker the better. It’s just the way it is.

Type 1 gamers have 2 major things against them in regards to society’s perception and willingness to support the search for a cure:

1 – Stereotypes about “Diabetes” as a whole meaning not understanding the differences between Type 1 and Type 2 which is often associated with phrases like “Can be reversed” or “Can be controlled with diet” or “Caused by poor lifestyle choices”. Type 1 Diabetes is in no way caused by lifestyle. Type 1 Diabetes cannot be prevented. Type 1 Diabetes usually strikes innocent children, often with no family history of the disease.

2 – Before complications arise, Type 1 gamers generally look very, very healthy on the outside. They run, they play, they work and often thrive. Aside from Adele’s insulin pump clipped to her belt, infusion set (that is usually hidden under her clothes) and calloused finger tips she looks as healthy as all of her non-Diabetic friends.

Type 1 gaming is like living a double life. There is not one aspect of our life that isn’t affected by it. It’s always there and must be dealt with 24/7 without any exceptions yet we don’t talk about it all of the time. Type 1 gaming always seems to take place in the background, behind closed doors. Society is generally frightened by the sight of blood or needles, so Type 1 gamers tend to test and inject insulin in private.

Even if the pain and suffering isn’t always apparent on the outside, it doesn’t mean that it doesn’t exist. Type 1 gamers deserve better. We deserve a cure.

Flow State

Even with all my good intentions, I really haven’t been good at all at updating this blog. As of late, it seems that all that I can do is just follow the current of my life. I’m tired, not depressed, and just living in a constant “flow state”.

I’m not really sure if this is a realization that comes with age, or if it’s related to living with a chronic illness, but a few months ago, it suddenly hit me that I’m going to die. Until now, I had never really, really thought of this. I mean, I was just way too busy living. But in reality, it is one of the rare sure things that eventually happen to every single living organism on this planet. There is absolutely no way of avoiding it. The death of our physical body is inevitable. I mean, like everyone, I’d learned this as a child, but I had never really, really thought about the reality of it until now.

Personally, in a way, this knowledge has actually been a relief. It’s like studying for an exam when you know you have absolutely no chance of passing. All of a sudden, the stress and pressure of doing well dissipates and goes away. Studying becomes much more enjoyable and simply an opportunity to gain knowledge that will enrich your life. What I’m trying to say is that no matter how fit, healthy and strong I make my physical body, my final outcome is the same as everyone else, our physical bodies are going to die. On our death beds, we are all the same. The same as the chain smoker, the millionaire, the homeless drug addict, the superfit professional athlete. Our physical bodies all become fertilizer.

As a Type A personality perfectionist, being bombarded with all this advice as to what we should eat, how active we need to be and how we need a certain expensive product to enhance our life, it made me realize that even if I diligently follow each and every one of these guidelines that the outcome in the end is still the same – fertilizer. As a Type 1 gamer, the logic is the same. Even if I manage to attain excellent control, the end result is still the same as everyone else including non-gamers…

One of the best feelings that I get from riding my bicycle is carving through buff single track on my mountain bike. At speed, the whole thought process ceases and everything seems rather reflex based. Your body just seems to maneuver the machine automatically. You’re not thinking about how you’re riding, you’re just riding. This is probably the main reason why people like myself become addicted to riding bikes. This “flow state” brings you to the root of what it means to be alive. It strips out all of the “bullshit” that’s in our head and enables our body to make all of the decisions instead. This feeling of no-mind is incredibly powerful.

So the epiphany of realizing the true meaning of the old proverb “Don’t take life too seriously, no one gets out alive” has me seemingly living in a constant “flow state” not only on my bike but in Type 1 gaming as well. I’m letting my body play the game instead of my mind. We calculate carbs and insulin bolus amounts, correct lows and highs and just move on. When in this “flow state”, there is no dwelling on the past or looking too far ahead in the future.

I’m not really sure if I like this yet. I mean on one hand it’s the closest that I’ve been to really living in the NOW I guess, but on the other hand, during our last Diabetes clinic appointment, we were told that Adele's A1C was great but... she was having too many lows. We were just dealing with them and moving on without analyzing why and attempting to make the appropriate corrective changes.

In a way, it seems like you just can’t win while playing the Type 1 game… But then again is it really worth getting upset about since the final outcome is always the same – fertilizer?

Ski slopes and jelly beans

 

I’m not really sure how she made it down the hill. She was shaking and complaining that her ski boots were too tight. I was trying to remember how much carbs she had consumed before hitting the slopes for a few runs, trying to convince myself that it was enough, but I still knew that she was low. She insisted on going to the lodge to test.

I don’t remember if I loosened her boots before or after testing since she kept telling me that her feet hurt soooo bad, but I do very clearly remember the number that appeared on the meter after testing her blood sugar. 1.5 (27). Any number in the 1's is very, very, dangerously low. I sat her down in the snow next to the ski rack and began shoving Mike and Ike jelly beans into her mouth. Skiers were coming down the hill behind us while others were racking their skis after a few runs or getting ready to hit to slopes, all unaware of the medical emergency that was happening at that very moment while Adele was sitting there in the snow, every single cell in her body literally on the verge of death begging for sugar.

As Adele’s caregiver, I always feel like such a failure when low lows like these happen. They don't happen often, but I should know better after nearly 10 years of gaming… Why didn’t we test right before getting a few runs in instead of waiting until now? Why did we get too excited? As much as we were looking forward to the very first ski day of the year, we were certainly not having much fun right now… How could I have been such an incompetent Type 1 gamer? How could I lose focus like that?

After forty to fifty grams of carbs literally shoved down her throat and about 10 minutes later, Adele looks at me with a big smile and says “I feel better now, get your skis ready, I really want to go again!” I felt sad realizing that almost dying has become normal to her. Lows are so damn scary in their urgency and immediate danger, but can be turned around with a quick acting sugar fix. And in a matter of minutes, the dying is back amongst the living… Almost as if nothing had ever happened. What a crazy way to live. Insane really…

Sometimes Type 1 gaming can be so ironic. The physical exercise which should make us healthier, can lead to a life threatening medical emergency, whereas unhealthy sugar-loaded candy becomes the life-saving medicine… 

After this, Adele’s blood sugar hovered in the 8s and 9s (144 to 180) for the rest of the day and we still managed to salvage the day by getting enough runs in to finish the day with tired legs and huge smiles.  With Type 1 gaming, a day on the slopes is never just about skiing...

If you don't puke a bit and re-swallow, you're not going hard enough...

One of my earliest memories of the bike was being totally blown away at how the two wheeled machine stayed upright. At rest, the bike falls over unless something is holding it up. But when moving, it somehow magically stays upright. As a very young kid, I remember this being one of the coolest and amazing things that I had ever seen. Then I learned how to ride and fell madly in love…

I’m not sure if it’s the thrill of the speed along with the g-forces felt during the ride that I enjoy the most. The whole concept of a roller coaster is built on this thrill… But unlike an amusement park ride, a bike ride is free (once you own a bike) and there is no waiting in line. The bicycle, such an efficient machine that enables you to travel long distances with minimal effort compared to all other human-powered means of travel. Looking back, all I remember is that growing up I just couldn’t get enough of it…

After Adele’s Type 1 diagnosis in 2002, the bike became one of my saviors. I was pissed and I channeled a lot of this anger right into the pedals. The more that I realized how complex this whole Type 1 gaming was and how it affected every single aspect of our life, the more I became obsessed with doing what it took to not let it slow me down and the more I needed to ride. The complex trials and tribulations of Type 1 gaming pushed me go harder. I wanted to run (or in my case ride) away from it all. The physical pain of pushing oneself on a bicycle was very good at masking, dulling or burying the deep pain inflicted upon me by Adele’s Type 1 life sentence. In a way I felt guilty for having a much simpler life by not having Diabetes myself as well as having passed on my defective genes which caused Adele’s immune system to go haywire and destroy her ability to produce insulin. The bike became my own personal medieval torture device with which I punish myself regularly.

But after nearly 10 years, the anger and guilt towards the Diabetes diagnosis is beginning to lift and as a result I started questioning myself about the whole bike thing. Why bother? What the hell am I trying to prove? Why do I keep getting back on, chasing I’m not really sure what? Why do I bother lining up at the start line after signing up (and paying) for a sure beating in the local “who the hell really cares” bike race that I most often have absolutely no chance of winning? Why do I keep pushing myself to a point of near annihilation mostly chasing kids less than half my age? I’m an ordinary, average, mid-pack amateur master bike racer spending way more money than I will ever earn from the sport. But, in Adele’s eyes I’m the absolute very best damn cyclist in the universe.

Suddenly, it makes so much sense. It’s not about results or finishing first. It’s about being a role model for Adele by continuously and consciously seeking self-imposed physical suffering and discomfort in order to cultivate growth and forward movement. The bike has taught me so much about discipline, sacrifice, friendship, teamwork, perseverance, dedication, self-confidence and suffering, all character traits necessary to be a successful Type 1 gamer. And to think that this realization came to me when life really makes the most sense… when I'm riding my bike.

See ya on the ski slopes...

Unlike what most considers to be “normal”, our bodies were not designed to sit at a desk all day. Our bodies where designed to move and to perform physical work. Regular physical activity eventually causes an adaptation which makes us physically stronger, fitter and generally healthier.

Exercise also makes our body more sensitive to insulin. Essentially, it helps the insulin do its job (move glucose from the bloodstream into the cells to provide energy) much more efficiently.

With Type 2 Diabetes, insulin resistance is a big part of the problem, therefore becoming more active is also a big part of the solution. With Type 1 Diabetes, physical exercise is also important. By increasing insulin sensitivity, the Type 1 gamer requires less synthetic injected insulin to control blood glucose levels. Less medication is always better and by decreasing insulin dosages, you also increase the likelihood of getting doses right. Less medicine = smaller mistakes, whereas more medicine = bigger mistakes. A Type 1 gamer can however never eliminate all injected insulin, since unlike Type 2 Diabetics, their bodies have lost the ability to produce their own insulin. Increasing insulin sensitivity is good in that it makes it much easier to avoid high blood sugars. When the Type 1 gamers physical activity level goes up, the injected insulin begins to work much more efficiently in avoiding high blood glucose values which are the cause of long term health problems associated with the disease.

As good as this all seems, there is also one “drawback” to physical exercise for a Type 1 gamer and that is putting them at risk for hypoglycemia (low blood glucose). One of the differences between Type 1 and Type 2 Diabetes is that in “adult-onset” (Type 2) Diabetes, the patient is mostly not susceptible to hypoglycemia (low blood glucose) since the mechanisms in their bodies working to prevent this are still working. Hypoglycemia is a constant and immediate threat for all Type 1 gamers with possible outcomes being unconsciousness or even death if untreated. Hypoglycemia can creep up almost unexpectedly with little signs or symptoms until it’s too late. Playing in the snow and jumping on her trampoline are the activities that drop Adele’s blood glucose the most.

This coming weekend, Adele and I will be spending a day on the ski slopes downhill skiing. Even if the physical effort required is less than cross-country skiing, it still requires a significant level of physical effort that will surely send Adele into hypoglycemia if I don’t back off on her insulin. That is the part of the equation that is 100% certain. Determining exactly how much insulin I need to back off is the tricky part…

Adele’s test kit in my jacket (close to the body to avoid freezing) and some simple, fast-acting sugar are a must during all of our ski runs as well as hourly blood glucose checks to see if the reduced dose of insulin is enough or too much. Then, a few extra blood glucose checks during the night to make sure the delayed insulin sensitivity doesn't make Adele go low up to 24 hours after all the extra exercise.  All that work, worry and vigilance to do what most non Type 1 gamers do without even thinking twice… Is it worth it? Imagining Adele’s big smile coming down the hill as I write this… you bet it’s worth it.