Challenged by a friend with Type 1 diabetes, I signed up for the T1D Text Challenge with the Juvenile Diabetes Research Foundation (JDRF). The challenge consisted of up to 24 text messages simulating many of the trials, symptoms and decisions that Type 1 diabetics have to contend with every day. I signed up for the challenge at 11:20 pm on Wednesday, November 14. Though I got an immediate confirmation, the texts didn’t begin until Friday, November 16 with a general disclaimer (the whole educational purposes only and don’t use this to replace professional medical advice thing) and my day as a diabetic “officially” began a little before 8:00 AM. I went to bed around 9:00 am with the phone buried in my purse, and didn’t get out of bed until after 3:00 pm…so 8 or 9 texts had already come in. Looking them over, it’s lucky for me this was simulated and not real life:
7:47 AM, Nov 16
Before leaving home, grab blood meter, insulin injection tools & emergency glucose supplies. Constant preparation is top priority for T1D. TxtStop2End
8:30 AM, Nov 16
Give self the daily pep talk on doing everything possible to keep blood sugar level within recommended range. Stay strong if set-backs happen. TxtStop2End
9:35 AM, Nov 16
2 hours since breakfast. Check blood sugar. Higher than it should be. Why? Sometimes there is no explanation. Take injection to correct high. TxtStop2End
10:41 AM, Nov 16
You are hungry & want to eat an apple. Every carb needs insulin. So test blood before eating. Consider when you eat lunch & what you will eat. TxtStop2End
10:42 AM, Nov 16
Every fingertip feels sore and tender. Still, you need to lance one to get a drop of blood. There is always the backup spot: the thumb tip. TxtStop2End
12:16 PM, Nov 16
Lunchtime blood test too high. Count carbs you will eat. Calculate insulin dose. Increase slightly based on high meter reading, per your MD. TxtStop2End
1:49 PM, Nov 16
90 min since lunch. You feel low & test is low. Drink just the right amount of orange juice (fast acting carb) to bring blood sugar back up. TxtStop2End
3:05 PM, Nov 16
Feeling sluggish & a bit emotional from that earlier low. Try not to beat yourself up. Stay positive even after a couple out-of-range tests. TxtStop2End
There’s a lot of preparation and forward thinking involved in just having a normal day–I’m lucky if I can remember my purse, phone, keys and Nook in the first trip out of the door. And there are many days when I get lazy and leave some of those things behind if I’m rushed and I can’t find them. Leaving behind my insulin or emergency pick-me-ups, while indulging my laziness, could be foolish or even fatal. Up to now I thought the insulin was prescribed to balance blood sugars because of what was eaten; I had no idea that every action–eating, exercising, basic body functions–was driven by that insulin dosage, and that dosing fluctuates depending on these activities and precise nutrient intake. And see that lancet business? I got one to deal with some staph bumps that were being a nuisance (with proper disinfection and handling, of course). Very few of those were on my fingertips. I can testify–that quick prick is NO FUN AT ALL. Some of the newer meters allow for arm testing, but still–stabbing myself daily, on purpose, without fail? I think the wuss in me would seriously be considering a diabetic coma.
3:46 PM, Nov 16
2 hours since low sugar episode. Test again. Wow! Blood sugar number is exactly where it should be. Do not celebrate w/ a big load of carbs. TxtStop2End
I chuckled at this one, because knowing me, I probably would have done exactly that and messed up my levels. We are often told to use rewards as motivators for reaching goals, and that would have been the first thing I ran to. I also noticed in one of the earlier texts about self pep talks; I already have to boost up my self-confidence over the normal “woman” issues and my own self-esteem–I simply can’t imagine having to boost myself up to keep myself alive and well.
5:19 PM, Nov 16
Back home. Ready to relax but you want your 2-mile run. Regular exercise is a big benefit for people with T1D. Take necessary precautions. TxtStop2End
OK, there is NO WAY I’m doing a 2-mile run under any circumstances. However, I do know that an active lifestyle is important in any state of health, so maybe if they’d texted “Zumba class” instead, I’d have been OK with that.
5:23 PM, Nov 16
Good blood sugar level. Based on experience, you consume extra carbs to prevent hypoglycemia while running. Carry glucose tablets on run. TxtStop2End
More of the preparation thing. If I do decide to do any outdoor exercise activity, the only things I carry on me are my keys, my ID and maybe my water bottle (though I would keep that in the car or on the counter by the door if I’m doing anything high-impact that requires that I carry as little as possible).
6:30 PM, Nov 16
Almost dinner time. Check blood. See number before deciding what to eat & how much. Factor in 2-mile run for pre-dinner insulin injection. TxtStop2End
Calculating what and how much to eat against current blood levels and the exercise I just did, and balancing the amount of insulin to use based of all of that? I’m lucky if I can decide WHAT to fix for dinner, and that’s usually a last-minute decision.
6:50 PM, Nov 16
Dinner! Lots of protein, vegetables & fresh fruit. As healthy as fruit & veggies are, they still contain carbs, so they still require insulin. TxtStop2End
Healthy eating STILL has to be monitored and counter-checked. LIVING is a full-time job.
6:51 PM, Nov 16
Insulin bottle almost empty. Check supply in fridge. Buy more, enough to last through even unexpected events: weather emergencies, etc. TxtStop2End
Having gone through several hurricanes–with the last few taking pointed aim at my refrigerators–I can now fully understand the mad rush for ice and generators, and have a new understanding and respect for anyone who has had to ride it out in a hospital, nursing home or other health care facility.
8:09 PM, Nov 16
Skipped dessert at dinner & now crave cake or ice cream. Satisfy sweet tooth and inject more insulin? This is a constant daily T1D dilemma. TxtStop2End
9:43 PM, Nov 16
Did not resist dessert; took fast-acting carbs. Blood glucose now too high. Inject 1 more insulin dose to bring it down. TxtStop2End
Resist dessert? I had two mini-cheesecake squares and some chocolate chip macadamia cookies for BREAKFAST. I did make some sensible choices during the day–8 oz. of fresh squeezed juice (fruit and veggie combo), one King Hawaiian sweet roll and a few blackened shrimp out of the batch that would augment my leftovers later, but I am completely and utterly helpless in the face of sweets.
Now the next few texts came while I was at work–and scared the hell out of me:
10:28 PM, Nov 16
Blood test before bed: number is only a bit lower but heading in right direction. Lights out. Full nights of sleep are important for T1D. TxtStop2End
In my particular line of work, full nights (or days) of sleep are an anomaly. I know there have to be some people in the television and production industry dealing with diabetes, but I can’t see how they do it.
2:07 AM, Nov 17
Wake up sweaty, confused, agitated. Somehow do blood test; dangerously low. Drink fast-acting carbs kept by bedside. Do glucagon injection? TxtStop2End
2:12 AM, Nov 17
Call emergency contact who lives nearby. Say what is happening. Ask contact to be on standby. Do another test. Slightly higher/safer. TxtStop2End
THE HELL?!? EMERGENCY CONTACT?!? The phrase “diabetes related complications” in obituaries always seems an abstract concept, a byproduct of NOT properly taking care of yourself. This just got real. My virtual day was up and down but at every stage there was monitoring and measuring and medicating…but there was still a possibility for a major health crisis. I had to look up glucagon–it didn’t even occur to me that diabetics also needed something to LOWER blood sugar. Many people, my friend included, deal with this fearful situation on their own all the time. I can imagine this scenario with asthma because I’ve ridden out a few asthma attacks with my now-husband. Emergency watch for diabetes? Can’t quite wrap my head around it.
2:43 AM, Nov 17
Wait 30 minutes. Check blood sugar to see if number is moving higher. It is. Eat a low-carb snack to stabilize. Try to relax, try to sleep. TxtStop2End
6:00 AM, Nov 17
After rough night, you want to stay in bed. But no. Prick finger, test blood. Good number. Goal today: no highs/lows. Another T1D day begins. TxtStop2End
After a day of cramps or being depressed I want to stay in the bed. AND inhale a pint of ice cream. Neither would be an option for a diabetic. It takes a warrior to carry this disease.
This experience has been a great eye-opener for me. Managing diabetes is way more involved and complicated than I thought. And though I never physically felt a symptom, I think I got a better understanding of what people with diabetes live with every day. The challenge closed with this final message:
Final message (9:30 AM Nov 17):
When you live with T1D there is no *TxtStop2End* but you can help end days like these with a $10 donation: Text JDRF to 20222. Thank you. TxtStop2End
I believe I will. I hope you will, too.