What I Wish People Knew About Diabetes

Part of the joy of attending events such as a JDRF ride or a triathlon with Triabetes is being surrounded by people who really "get it" with respect to having type 1 diabetes and trying to live a full and active life.  I have also been fortunate to have many close friends and family members without diabetes who have taken time to learn and have been patient as I rambled on about my experiences managing my diabetes.  In my mind, I carry a little corner of worry--or perhaps "attention" is a better word, depending on the circumstances--about my blood sugar and insulin levels and how they are changing, and how they might be affected by anything else happening.  For example, I may be running, watching my blood sugar falling and thinking, "Hmm, can I beat this or am I going to have to eat something before I finish up in 15 minutes?"  Or maybe on a long bike ride I may see my blood sugar rising and wonder whether that half-of-a-unit will be enough or should I risk having to eat more later or getting a low blood sugar because I treated it more aggressively.  Being able to share these moments with a friend who understands, or is willing to learn how to understand, eases my worry.  Knowing that there is at least one other person nearby who understands what it might mean for me to see "42" on my meter helps me to feel so much less vulnerable.  When I was in a crash at a criterium in February, 2009, the medical staff person (thank you Katherine H!) for the race came over and said that she was a nurse and experienced with diabetes; a wave of relief passed through me.  "My blood sugar was 250 before the race and now my pump is broken! I'm on Humalog!" She knew exactly why I was worried and was able to find my meter for me and communicate my concerns to the EMTs.  This was a tremendous comfort to me during a truly frightening and painful experience.

What do I wish people knew about diabetes? Honestly, there is so much to learn and so many other diseases and medical conditions that people may need to focus on in their own lives, that I wouldn't expect anyone to become an expert on diabetes unless it were required of them or else they had a particular interest.  I would hope that people are aware of the signs & symptoms of both type 1 and type 2 diabetes, since delaying a proper diagnosis can lead to a great deal of unnecessary suffering.  Also, there is a type of diabetes called "1.5" or LADA, which presents more like type 2 but which is actually a slow-onset version of type 1 (and is often misdiagnosed).  I wish more people appreciated the dramatic effect of exercise and diet on their metabolism and worked to prevent the onset of type 2 as much as possible.  Diabetes is no joke.  Still, I think it is unhelpful to make assumptions about either type 1 or type 2 diabetes unless one has already gained some actual fact-based knowledge on the topics, and met quite a number of people who actually have type 1 or type 2 diabetes.

But if you happen to be a friend of a person with diabetes (and I will focus on type 1, since that is my area of expertise, so to speak), and want to be someone who "gets it," here are a few starting points:

1)  Type 1 diabetes does not have a cure, although there are a lot of exciting lines of research.  I am 100% uninterested in anyone claiming to have an "unknown" or "magic" cure.  Really, once it is found, I am sure it will not be a secret for long.  I will take insulin until a cure is found.  Although changing my diet and exercising will affect the way I manage diabetes, it does not cure me of it.  Type 1 diabetes is caused by an auto-immune process that seems to be triggered by something environmental.  The exact cause is unknown.  Although it is more common in kids and young adults, it can occur at any age.

2)  Insulin is a hormone made in the pancreas by the beta cells.  In type 1 diabetes, the beta cells get destroyed and the insulin must be replaced through injections (via an insulin pump, syringes, or pens).  Insulin is required 24 hours per day, even when fasting.  I take a background rate of insulin ("basal rate") to cover basic metabolic needs, and take a "bolus" (like an injection) when I eat anything with carbohydrates.  High fat and/or protein foods also require insulin over longer time period.  Food gets converted into glucose (in varying proportions) which eventually enters the bloodstream, causing a rise in the blood glucose level.  Insulin lowers the glucose concentration in the blood by facilitating transport into fat and muscle cells.  

4)  Although the normal blood glucose for someone without diabetes is typically 70-90 mg/dL and temporarily a bit higher after a meal, my blood sugar can be anywhere.  If you ask me what my "normal" blood sugar is, I might give you a blank stare.  I try to keep it above 70 and otherwise as low as possible given the situation; I guess my target is around 110.  When I am exercising I will usually keep it a bit higher, since it can fall very quickly.  I have had readings below 20 and above 600, otherwise known as "LO" and "HI" on the blood glucose meter.  It can fall and rise really fast; but sometimes it can take forever to budge.  Low blood sugar makes me feel really weak and also scared, if it is quite low.  I am still able to communicate (this is not universal) but I may speak slower and act a little dazed.  I really hate having low blood sugar.  High blood sugar can make me sleepy and/or moody and it sometimes feels like a mild stomach flu.  I get thirsty and can become dehydrated more easily.  Sometimes my arms will cramp.  Things that lower my blood glucose include: insulin, exercise, not enough food.  Things that can raise my blood glucose include: food, stress & anxiety, exercise, too little insulin.  These are not the complete lists.  On my pump, I have different basal rates for the different times of day.  I also take a certain amount of insulin in response to the amount of carbohydrates in a meal and another amount to correct for a high blood sugar.

5)  Exercise can lower or raise my blood sugar in the moment.  In the long run, the increased insulin sensitivity due to exercise makes it easier for me to alter my blood sugar and allows me to take less insulin overall.  During exercise, I am exquisitely sensitive to insulin.  For example, I may take 3 units for 45 grams of carbohydrate normally; but when exercising, I might just take 0.5 unit.  Frequently, I may not even take any insulin at all, other than my ongoing basal rate.  Stopping for too long to eat in the middle of an exercise session can make it difficult, because then I will either need to bolus for the food or will watch my blood sugar start to climb.  If I take a normal bolus, and then start exercising again, all the insulin in my body becomes supercharged and my blood sugar may come crashing down.  Then I have to eat more, which is really annoying to me, or I will have to stop, which is even more frustrating.  I could compromise and take a partial bolus and this is often what I do.  But there is a bit of uncertainty about how much to take and then all I get to think about for the next couple hours is whether my blood sugar is going to crash.  This is why I may get eager to get going again; really, I can relax!

6)  I plan my insulin and meals around my exercise.  If there is a big change in schedule, this can make it more difficult.  I may have changed my insulin dosages in anticipation of a race or workout start time.  If there is a big change, then I will need to compensate for that.  This could require me to eat 2-3 extra GUs to get through a run (boo!) or could result in a super high blood sugar for the first hour of a bike race.  I realize changes happen and try to be flexible. 

7)  Please don't ditch me if I have to stop to test my blood sugar.  I usually try to test when people are stopped for some other reason.  I don't get bothered by most things, but getting left behind on a ride because I needed 45 seconds to check my blood sugar makes me want to cry.  Fortunately this rarely happens anyway, and having a continuous glucose meter means I just have to pull it out and take a look.

8)  If you find yourself surrounded by some PWD (people with diabetes), just throw out the question, "What's the fastest way to raise a low blood sugar?" and you will keep the conversation going for at least 10 minutes.  In general, simple carbs without fat or protein absorb quickest and are best for treating low blood sugar.  How much I need to eat depends on how much insulin I have in my system, how fast I may still be dropping (i.e., how fast my blood glucose is dropping), if I am exercising or planning to exercise, if I ate something else already, etc.  I try to carry enough sugar to feed 100 hypoglycemic PWD but if a friend happens to carry a spare GU, that certainly could come in handy.  Foods that help me bring up a low blood sugar include: glucose tablets, Skittles, Smarties, juice, milk, energy gels (like GU), soda, honey (but eat carefully--I seriously choked once eating honey too fast during a low), corn syrup, etc.  Foods I wouldn't target but could bring up my blood sugar more slowly include: bread, fruit such as apples/bananas, candy with a lot of fat, granola bars, crackers, cake.  Foods that won't help include: pure protein (steak, chicken, cheese, eggs, etc.), nuts, non-starchy vegetables, lard (hey just seeing if anyone is actually reading this).

Well, I could go on but anyone reading this probably either knows this stuff already or is now completely overloaded.  Perhaps most importantly, what I would like people to know is that I and most people with diabetes are always willing to answer questions, as much as you are interested.  Personally, I don't expect people to know too much about the particulars, just as I don't know the ins and outs of most other chronic diseases.  So if a friend says, "Hey does insulin cause your blood sugar to go up or down?" I am not thinking, "What a dufus!"  I am sincerely glad to explain it because your just asking about it makes me feel more supported.  And I believe that PWD have insights gained through their unique window on their own metabolism that can be enlightening to anyone, with or without diabetes.  Finally, I believe that as the incidence of diabetes continues to increase, PWD who have observed the dramatic changes in metabolism related to insulin, exercise and diet are in a unique position to support efforts to prevent type 2 and to help people improve their management of both type 1 and type 2 diabetes.

(See other blog posts addressing this diabetes blog day topic.

I was supposed to just name 6 things but I got a little carried away. Oops.)