National Diabetes Awareness Month (NDAM) gives the type 1 diabetes (T1D) community the opportunity to share stories, build awareness, and raise funds. Please read the following stories shared by an anonymous person with T1D.
Thoughts Inside the Head of Someone with T1D
The organization Beyond Type 1 has determined that a typical person with T1D makes 180 T1D-related decisions each day. I’ve always wondered… “Is that true for me?” I decided to keep notes of the thoughts I had regarding T1D management to test this theory…the following are just for the start of my day:
- Just past midnight, I decide to check my Continuous Glucose Monitor (CGM) before I shut my eyes to go to sleep.
- A second later, I need to consider verifying the accuracy. Since I had put on a new sensor earlier that evening and wanted to be sure it was on target.
- I decide to check my blood sugar.
- My meter strips are close to expiration, so I decide to open a fresh container of strips.
- I wash my hands and test. The blood strip reading looks lower than the CGM. So, I decide to do an additional test because my hands weren’t completely dry when I took a blood sample.
- After the second blood test, I decide it is accurate.
- Before going to sleep, I need to have a small snack if my blood sugar (let’s call it BS) is below 150. My BS is currently 148.
- Since I haven’t had any short-acting insulin for 4 hours (which is the amount of time I think my short acting insulin is “active” and pulling down my blood sugar levels), and because my BS has been “stubborn” lately, I decide to forego the snack. It’s only a few minutes into the new day and I’ve already made 8 decisions.
- 4:02 a.m. My CGM emergency alarm blares! I need to attend to it immediately. It shows a blood sugar of 39.
- I decide to analyze the screen with the graph that shows the rise and falls of my BS every few minutes. It shows a steep drop in my blood sugar from 148 to 39 in the past 20 minutes or so.
- I determine that that happened because I was resting too hard on the sensor on my hip. This happens sometimes with CGM devices.
- Although I am quite confident that it is a misread, I decide to get up and test my sugar. The danger of being wrong about this and returning to sleep with a BS of 39 could be deadly. Literally.
- My BS is 140 so I decide to go back to bed but make sure not to rest on the sensor. It will return to accuracy very quickly.
- I wake up for the day at 6 am. My first thought and decision is to check my blood sugar level. It has risen to 175 due to the “dawn phenomenon” which I sometimes experience. My next decisions are:
- Is it too early to take my long-acting insulin?
- I decide how much fast-acting insulin I should take for the BS, which is a little high.
- I also need to wait 30 minutes before eating anything because I take thyroid medication (for a hypothyroid condition common for people with T1D).
- I decide to wait to take a fast-acting dose because I don’t want to go too low. Go down to the kitchen for coffee without any cream due to thyroid medicine.
- I’m very hungry as I look at a piece of fruit but need to wait 30 minutes, plus need to retest and take insulin before eating anything.
- I see a bagel and want just a bite, but I decide to have self-control and wait until after taking insulin.
Having only barely started my day, I realize I’ve already made 20 decisions to manage my diabetes. How many more can I expect to make, and without a cure, will I have this many decisions to make for the rest of my life?
Reflections from the T1D Community
“I’m about to run my third marathon for JDRF. I would run a hundred marathons for JDRF. Yet, every time we write our checks we think, this has to be the last time, right?” – Friend of a T1D family
“My little trooper is just 3 years old. Diabetes gives her a new challenge every day. We have good and bad days. We thrive on the good days and on the bad days, we pause. It makes her resilient but it will never stop her from anything. Together we keep going forward, step by step, until there will be a T1D cure!” – Mother of a T1D child
“Getting pregnant with diabetes is one of the hardest things I’ve ever done, but I would do it over and over again. It’s worth the fight every time.” – T1D, pregnant with her third child
The Difference Between Life and Death
This picture explains why people with T1D must be so careful with perfectly dosing insulin. Always precisely calculating the needed dose with many factors to consider is extremely difficult. The left spoon has 2 units of insulin. The right spoon has 10 units. If you needed to take 2 units, and you accidentally took 10, it would be deadly in a matter of hours.
What Does T1D Hypoglycemia Feel Like?
*Hypoglycemia is defined in the medical community as a deficiency of glucose in the bloodstream.
What does it feel like to have a serious T1D hypoglycemic event? I didn’t fully understand until it happened to me. Generally, the severity of these events depends on how low one’s blood sugar goes and how quickly. Swiftly dropping blood sugars may not give one enough time to even react. A severe incident of hypoglycemia, one that a person with T1D can feel coming on, can quickly cause a loss of ability to speak, walk, swallow, remember what one is doing, and confusion of place and time.
Here’s what I can remember from various hypoglycemic events throughout my life:
I have been “jump-started” with a glucagon injection administered by my husband in the middle of the night when my seizing from a low blood sugar level woke him up. I have had to pull my car onto the shoulder of a busy interstate highway, ingest every bit of sugar I could find, and then just wait and wait until my sugar level inched up so I could function again. I have found myself lying in bed surrounded by paramedics with no recall of what happened.
Living with T1D can be scary.
For me, during a hypoglycemic attack, my vision jumps around, I see double and there are white flashes of light as my consciousness slips away. I am weak, shaky, and have trouble remembering how to get food to my mouth. While this is happening though, I am aware that I am having a hypoglycemic event and that I am near losing consciousness. It is frightening to know that I am in true danger. While experiencing hypoglycemia, I don’t know what the outcome will be. Most typically it will last about 20 minutes, sometimes longer. Once the sugar or glucagon injection kicks in, awareness comes back, and just like that, I pick up right where I left off. No one would have any idea that I just experienced a true emergency that could have ended very differently.
This often makes T1D “invisible.”
**Note: The sensation of a low blood sugar level will vary from person to person. The feelings I have described above are from my own personal experience.
Messages of Hope from the T1D Community
“My son has lived with T1D for 11 years, he is currently a sophomore in college. He is thriving because of the amazing community and resources at JDRF. From the minute he was diagnosed until now JDRF has given our family hope for a better today and tomorrow every step of the way. The momentum at JDRF is moving fast forward and we will remain part of the fight because we won’t stop until there is a cure!”– Mom of a T1D teenager
“So many people that I love deal with T1D. They make it look so easy and try their best to have it not disrupt their lives. But I know it is an underlying factor that affects them every single day. When someone you love deals with something like type 1 diabetes, you just want to help take that away for them. And for that reason we will continue to support JDRF until Type 1 is Type None.” – Relative of 3 T1D family members
“I have been a T1D for 55 years – way before there was all this technology that helps us manage our blood sugar – and have fought many of the complications of this debilitating disease, but I am still here enjoying every day, having fun and trying to make the most of each and every one.” – T1D adult, diagnosed in 1967
T1D is a unique struggle for everyone, but what ties our community together is our hope for a cure. Help us move forward toward our goal by donating today!