A Glimpse of Understanding
Disclosure: This blog post was originally written by Scott Strange (@Strangely_T1) who writes Strangely Diabetic. Seeing what a great work it was, I decided to personalize it to spread the "Understanding." So enjoy, but realize that most of this isn't my original work.
Here is your glimpse inside my Life With Diabetes. Read at your own risk, realizing I'm a 31-year husband who's had Type 1 diabetes since age 5, is by no means in good control, and doesn't pretend in any way to say anything that could possibly be construed as advice to be applied to your life.
As a PWD (person with diabetes) there are certain things that I do everyday without really even thinking about them. Having been diabetic since 1984, diabetes is like having brown eyes and brown hair. It's a way of life. Something I've lived with since age 5 and will probably live with every day until I die.
There is no cure. No treatment that can make it go away. This is something that must be managed every, all day, no matter what else is happening.
At 26 years of living with diabetes, that's more than 9,490 days so far.
That reality is something that a person without diabetes just can’t truly understand, even as much as they may want to. Sufferers of other chronic conditions can get a glimmer of it, I’m sure. But I know, as a diabetic, that I have no idea of what it is truly like to have a condition like rheumatoid arthritis, lupus, hodgkins lymphoma, or any of the multitude of other conditions that people can be afflicted with.
When I was 5 years old, I learned that I had a disease. I would always have this disease and it would kill me. Kids are often smarter than given credit for, so even tho parent’s want to protect their KWD’s (kids with diabetes) from stories of complications, given today’s media stereotypes, that is just impossible to do. So from an early age we learn that we can go low in the middle of the night and maybe have a seizure and possibly die. We learn that DKA (diabetic ketoacidosis) can put us in the hospital for days and possibly even be fatal.
And it is not only media, but friends. Will parents not want this KWD to be invited to a sleepover? Will another parent want to serve that child snacks or treats? What about Halloween? School functions? For a child who just wants to be "normal" and fit in, this can be a very solitary disease.
We learn that managing diabetes is much more an art than a science. We learn that it is like holding the ball on the 50-yard line. While balancing on one foot. With our eyes closed. You know you are eventually going to get hit, but you don’t really know from what direction it is coming. Did I mention the monsoon we’re standing in?
My first thought when the alarm goes off in the morning doesn’t involve the snooze button, it involves me asking myself how I feel - Low? High? Grabbing the Blood Glucose Meter to see what it says, trying in a still asleep fog what it said either at bedtime or the 3 a.m. hour when I got up to test.
Disconnecting everything to shower. Making sure I don't knock off the pump infusion set by washing my body, or by putting on my clothes. Checking my feet. Remembering to reattach everything. Making sure my meter is in my work bag, and there's enough test strips in the vial and extra pumping and testing supplies just in case before I walk out the door. Am I Low, do I need to some carbs before I drive?
In case you haven’t noticed, I haven’t started the work day yet. By this time, the clock reads only 8 or 9 a.m. and there are many many more minutes and hours of D-Living tasks to keep in mind.
The day at work is much like anyone else’s: stressful at times, meetings, deadlines. But my D-Life adds other worries to the list: will this high-stress situation drive my sugars up and will I correctly compensate for it? Does extra coffee in the morning mean I'll see a higher BG, and have to bolus for it? Did someone bring in breakfast and that means I need to calculate a carb count before eating? Is the meeting at a time when it is not too unusual for me to have a low, and should I eat something beforehand? How will an approaching deadline affect my schedule?
As is sometimes the case, what if my sugar goes Low and that complicates my work? What's the best way to bring it back up and make sure I don't have a reaction?
All of this goes on while monitoring my condition. Are my numbers reasonably normal for that time of day? Are they high? Did I miss my carb count or do I need to change my pump site? Are they low? Did I miss my carb count, have a little extra exercise or has my insulin resistance and/or sensitivity changed? Are the highs and lows happening at the same time for a few days in a row? Do I need to start making small adjustments to carb ratios, basal rates and/or insulin sensitivity? Are the lows dangerous enough that I need to make some big adjustments to get my numbers high and then tweak settings to bring them down or are they minor enough I just tweak to bring them back to a normal range?
Will new people I meet care that I’m diabetic and what diabetic horror stories will they tell me? Do I let those stories slide or let them know what I really think about hearing that?
We hit dinnertime. How much will I miss my carb count by when I go out to dinner with friends? If it's a place I know and frequent, the food count is easy - but if not, then how easy will it be to figure out? Will the restaurant have carb info on all their meals? Are they even remotely accurate? What about a spontaneous night out with The Wife after work - did one of us remember to bring the Lantus Pen for the post-dinner shot that will last through the night? Hmmm. Advance planning sure does come in handy.
Once at the eating location: Should I test in the car before going in, or when ordering the food? How long will it take the food to arrive? Should I take my insulin when ordering or when my meal arrives? If injecting with a needle, should I excuse myself and head to the restroom stall for that bolus? Remember to pick test kit up off table before leaving and test before driving home.
So now I’m home for the evening. Like everyone else, we PWD’s deal with all the other things in life that non-PWD's have: family, work, friends, hobbies, bills, taxes, favorite shows, telemarketing calls, what’s for dinner? How many carbs will be in that?
Why am I having trouble reading right now? Is my sugar low? Yes it is, that’s right! I sometimes suffer from hypoglycemia unawareness. The meter shows 42. Will 15 carbs be enough? Am I actually capable of getting to the carbs? How much insulin do I have on-board? Is this low a reaction to a bolus at mealtime or a reaction to a basal rate that is too high? Or is it just one of those WTF moments where there is no explanation??
Did I get my sugars back up or am I still chasing this low? Did I have too many carbs, and will I go high for eating too much to compensate? If I did, do I want to correct before I go to bed? If I do correct, should I pull myself out of bed at 3 a.m. to get up and test? If I don't, will I be able to wake up at all or will my wife have to stuff honey into my mouth or call the paramedics? Will I ramble like a crazy man and get violent because of a Low? Or, is it just not worth those possibilities and it's better to keep my sugars higher for the night? If I do, am I risking complications like blindness or heart attack at some point in the future?
If all goes well, I'll make it safely to tomorrow - which is another day, another 8-10 finger sticks, 150 carbs to count, more results recorded, a thousand scenarios getting played in my head about the day and the future. But that's not my concern at the moment. For now, today is ending and that's my concern.
Now I lay me down to sleep, I pray the Lord my levels to keep.
Thanks for stopping by my blog and leaving that wonderful comment.
This post, "A Glimpse of Understanding", it about brought me to tears. I realize that this is the life that my daughters will someday lead, as of now I do all of the carb counting, finger sticking, calculating insulin and shots, second guessing and what-ifs, setting the alarm at 3:00am, and anything else that goes with diabetes for them. Someday they will have to take over that responsibilty themselves...although they have a long time before that happens being that they are only 2 and 4 years old.
You are so right in that no one can truly understand what life with diabetes is like unless you are living it. Sometimes I like to think that I know, but I don't...I've never had to get 4 or more shots a day, I've never had to worry about how many carbs are in my meal, I can just sit down and eat. It is something I don't take for granted anymore since my girls diagnosis of type 1 diabetes.
Thank you for giving us a "glimpse" of a day with diabetes.
Your post was spot on. Those little/big decisions people with diabetes & parents of diabetics make are constant. I think we sometimes forget all the thinking that goes into diabetes...our brains are never allowed to rest. It is most obvious when my husband and I go for the weekend and I have to write out the boys schedule...every detail is important. I always leave a novel for my sister in law for sure!
Look foward to reading more!
Thank you for sharing this... I might borrow it.