When someone sees a high blood sugar, they often jump to the long term consequences of diabetes and say things like, “your eyes!” “Your kidneys!” “Your feet!”
When I experience a high blood sugar, those aren’t the things I think about. I think about how my teeth are wearing sweaters and it makes them feel more yellow than the Suns I used to draw & color in elementary school. Will that red lipstick make me feel less yellow? Am I wearing an outfit I feel comfortable pairing red lips with? Will people notice that all I want to do is scratch these sweaters off my teeth?
I think about how my throat feels like what I imagine the desert to be. I want to chug water so quickly that I usually spill it down the front of me. Does my unquenchable thirst make me seem dehydrated? And that I’ve been ignoring a small thirst until it got too intense to handle. Where is there more water? I need it 5 minutes ago.
As I drink my water, I think about what my day has in store. How often will I be able to get more water, and what kind of access to bathrooms will I have. I don’t want to run like a little kid with my legs crossed, but it’s definitely happened before. What do you think of me when I run like this? Or can’t go more than an hour without a bathroom break? Do I seem as ridiculous as I feel? Do you even notice?
I’m with you, because I’m not going to let diabetes interfere, but I don’t feel good. There’s so much sugar rushing through my body that I feel like my body may be turning to cement. I feel sluggish, but I want to be my regular self. I’ll take my wallflower/observer position and be content. I’ll pray my insulin works quickly and I’ll be able to join your fun quickly.
The grandparents at work were in town recently. It made for a much happier week where the smallest didn’t have to be driven all over creation for the other two’s activities. When I got there one morning, the grandfather said to me, “our granddaughter told us you have type 1 diabetes.” I was preparing myself for a “this friend has it and *insert horror story here*.” Instead, I heard, “my friend growing up had type 1 and she had to take shots; do you?” I overcame my surprise and then had an informative, yet brief, conversation about the differences in growing up with diabetes when I did compared to his peer. The diabetes community as I know it seems to grow every day.
The next day the grandfather informed me that he has Type 2 Diabetes. He described the amount of attention his food consumption requires, his pills, and his pride in not needing insulin yet, but that that day is looming just around the corner, and his exercise regimen. We bonded over this small, but very in-your-face part of our lives.
My pump site fell out a few weeks ago and it was a moment of pure joy. Until I realized I would have to put another one in. So I started taking shots. It makes my life with diabetes both easier and harder.
- I have never used the timer on my phone like I am now. I don’t want to double correct just because insulin is still working in my body.
- Putting a dress on is so easy.
- My body has so many bruises in various stages of healing. It makes me feel pretty damn ugly, but luckily it’s not summer.
- There is a lot more thought that goes into keeping me healthy.
- My diet has become much healthier and it’s all because I don’t want to stab myself again. I’m kind of okay with that.
- This is not easy.
I found this post in my drafts from this summer. I remember the night walking home and just how terrified I was. The rest of the lows don’t stick out in my mind, but a pattern of lows never makes me feel good. I am not experiencing this crazy amount of lows anymore, and based on my safety, I am grateful for that. I do not know at what point this stopped or when I started feeling better.
It started on the way home from seeing my friends. I was low before I left, but I had some glucose and assumed I was fine. By the time I got near my apartment, I was dropping and dropping and dropping and I had run out of sugar. I had this fear of collapsing and needing glucagon (not that it was in my purse) before I got to my apartment. I walked in and had drank multiple Big Bird juice boxes. I woke up low in the middle of the night. Had more juice. Ate fruit and fruit and crackers (I think) and more fruit without bolusing the next day. And the day after that. And the day after that. And then I was low nearly all of Friday night. I had plans for Saturday which didn’t happen. I didn’t walk for coffee for fear of going low. I don’t often let diabetes fear control my life. But I did. How long will it last? How many times will it interfere in my life? Will it make me scared to be alone? I don’t want to feel like this.
I joined a tennis league. For the second time this summer. I saw a familiar face and I was less than thrilled. I have met this person a few times before, and they also have diabetes and we have very different views on what that means. They once told me they had never been low. They have had T1D for a few years, so I was very confused. I asked more questions and this person considers a low only something that causes you to lose consciousness, not something that you treat with sugar. Okay. We view diabetes differently. At the end of the night, I couldn’t concentrate and I was having trouble focusing on the ball. I knew I was low. The other day I couldn’t find juice boxes at a small grocery store, so I bought cans of pink lemonade. As I walked away from the courts chugging, this person walked over and said, “are you allowed to have that?” I quickly, without-all-of-my-brain-capacity answered, “yes. I’m low.” I should have responded with “we’re all allowed to eat whatever we want if we’re not allergic to it.” But I was so mad. And so shocked. I only drink things like this when I’m low. And not that it matters. But that is my choice.
How can we expect the general public to understand and respect our lives with diabetes if we don’t respect each other? Diabetes is complicated enough without degrading other people with diabetes. We must remember that we are all different. We all choose to take care of our diabetes differently, and that’s okay. Please, let’s get in the habit of saying “I take care of my diabetes ______ way, but I can’t speak for other people with diabetes.” I know it’s a long sentence and I know getting in that habit will take a while, but I think we can build up our WHOLE community by treating our advocacy/conversation efforts this way.
I met my friend at the bar in between our houses. I had my Dexcom in my arm that night and the bartender said, (but I didn’t hear) “you have the pod?” It’s a busy and loud Irish bar. Later as I was getting another drink from a different bartender, he asked if he could ask what was on my arm. I told him it was a continuous glucose monitor and he yelled over to the first bartender to come check it out. Turns out, she’s had diabetes for years, has a Minimed pump and hates the Minimed CGM. “I wore that thing one night and it kept me awake all night telling me I was high and I wasn’t!” We talked about diabetes for a few minutes until another customer needed a drink. Bars are where I’ve had some of what I think are my scariest lows. When I look back on them later I can see how I wasn’t in real danger and there were in fact safe choices and sugar surrounding me. But between the lack of sugar and the increase in alcohol, obvious choices aren’t always so obvious. It was like a wave of relief washed over me in that instant. Not that I need to be taken care of. But if I say “my blood sugar is crashing. I need sprite now,” they won’t disregard my drink request in favor of someone buying alcohol. It’s the little things in life that make the difference between on edge and relaxing. I’m glad a local bar can give me that difference.
I’m still terribly shy and nervous and fail at working a room.
I know that squealing when I see old friends again makes me smile like crazy.
I know that meeting old friends for the first time will never get old.
I know that words are my power when it comes to this community. But trying to describe it never feels right.
I was at a party a few weeks ago where someone mentioned they weren’t going to eat any more cookies because getting diabetes would be the worst thing in the world. I informed them of the inaccuracy of their statement without disclosing that I have type 1 diabetes. The people at the party who know I have diabetes were not in the room. I wasn’t in a fighting mood or a “talk tactfully and succinctly to get my point across” mood, so I left the room.
As I was repeating this story to a friend this week, I realized that what sticks out in my mind as a major diabetes moment and what sticks out in my friends’ minds can be quite different.
There was a festival in town one weekend and I finally felt like I had made friends and they wanted me to join them. Who am I to say no to doing things with friends. Everywhere I looked there was delicious food. What was I going to have. Not if. What. I/we made my/our decision. I told my friends this was not a decision we could back out on because our choice had so much sugar (more than anything else there), that I would go low if I pre-bolused and then decided on something else. I think I guesstimated that it was something like 80 or 90 or possibly even 100g of carbs. I programmed my insulin pump and let the sound of delivery be music to my ears next to the kids laughing around us. We reached the front of the line and it was sold out. “You can go to our store tomorrow” they said. I had to immediately figure out what to do. This is the moment my friend realized how panicky life with diabetes can get. I mean, I was sad and disappointed and nervous about going low, but I bought multiple other things to get to the carb count. I’m sure I also had airheads with me. But it was a super hot day so if I got super low or went low super fast, this would’ve been a day I would have just wanted to stop and sit. No matter where I was. I don’t remember going low that day (doesn’t mean I didn’t), and I don’t remember going high (doesn’t mean I didn’t). I remember so many other wonderful things. Now I know that diabetes panic is part of someone else’s memory from that day.
I don’t think of this as a panic moment. I don’t think I appeared panicked. I know this friend has been around for more panicky moments. Did I hide those? If I did, why? I think I’d be safer if friends know when I actually panic and when I don’t. I believe it would keep me safer in an emergency. But, I really like this story. I like that a quick change of plans made this okay. I like that to me it’s funny and to them it wasn’t. I love the different views of how we dealt with it. I like that a simple story taught them more and more about diabetes. No one is going to learn it all in a day. Every experience teaches those around us, even if the lesson isn’t what we intend.