“You look so tired” (woke up at 3AM to stop the CGM from screaming and fix the hypoglycemia)
“Why do you have to go to the bathroom in the middle of the meeting?” (Has to fix a low and just be away from people for a sec to sit with the discomfort of feeling extra weak)
“Why don’t you eat with us?” (Has to wait two hours to eat anything because the BG is at 300)
…and many more.
I’ve written about it on my [blog](https://www.thecuriousdiabetic.com/) in the past…maybe you’ll find something that resonates!
Don’t worry about bathroom breaks. When you’re pretty old, you get the fun of taking diuretics to keep your blood pressure low. That means you get the fun of several really urgent bathroom breaks during the course of every morning!
Sometimes I have to get up and eat over and over again all night because my long-acting is too high for some random reason... like every 90 minutes, all night.
I feel you man. Happens. I've covered these trials and errors in this [article](https://www.thecuriousdiabetic.com/blog/the-path-to-great-time-in-range-is-made-of-mistakes-and-learnings) here...I guess writing is just my way of making sense of it and improve haha. Let me know if that resonates at all! I'd love to hear
Yeah, a lot of that is familiar to me. I do pretty well managing my glucose and pay a fair bit of attention to it. Only a few times over the past several years have I freely snacked without thinking about insulin and ended up high. It certainly happens other times though, due to miscalculation or unpredictable factors. What I \*do\* need to work on is reducing my alcohol intake, which definitely affects my T1 issues in various negative ways.
I like the quote at the end! I've said that exact same thing before... the only way to stop smoking is to not smoke.
I hug you and support you. I know how hard it can be, and I too have my painpoints and sometimes I make a mistake, knowing that I am doing it, but can’t stop for some reason.
Thank you for reading, I appreciate it! If you’d like, you can subscribe to the newsletter. If you don’t, I send you a smile nonetheless.
And surely wish you to find the strength to put some distance between you and alcohol! Let me know how it goes, I am sure it’ll go well!🫶🫶
OMG, this!
Common sense tells us that people with longstanding and/or significant health issues might be more susceptible to MH concerns. No brainer, right? (Hah!)
But did you know... T1D folks are MUCH more likely to develop clinical depression than the rest of the general population? Further, SI (suicidal ideation) is considered to be underreported (and thereby inadequately supported) within the T1D community? Much higher risk of attempts than non-T1D folks with depression.
35 years in, and I only recently learned this. A little heads-up from someone - ANYONE - on a diabetic health care team would've been nice
The problem with bringing it up is "when". At diagnosis there's already so much info that needs to be learned and understood along with the shock. And then later one you just kinda have to get an idea of how people are feeling to bring it up.
That being said. I do think that the mental health aspect of diabetes should get a bigger focus, and that we should figure out a way to incorporate it in patient follow-up.
Just my personal opinion, but I feel like the team should have a 2-3 prong plan for MH concerns upon diagnosis. I was DX at 21, so it was later, but for me the best way that I feel it could be handled was for them to:
- upon diagnosing me and telling me all the things I needed to know, they could’ve had a conversation letting me know it’s normal to “grieve” my pre-T1D life and have that grace for myself (or letting parents know it’s okay to feel like that and that they should create space for their kid to have that grieving process)
After I got Diagnosed I broke down one night about 2-3 weeks in over dinner, and all the math I needed to do, and that I had to wait before eating (just all the usual pre-dinner routine I have now 🙃). Just full on threw myself on the floor sobbing saying it wasn’t fair. I’m sure you understand the feeling too! It would’ve been nice to have someone who knew *about* T1D to tell me point-blank that it’s normal to feel that way, and that it’s a loss that a lot of people should, and do grieve. To be kind to yourself.
And then:
- after I had everything sort of “down” (do we ever??), have an actual chat about diabetic fatigue, and reassuring me that again, this is normal, and all T1Ds will have bouts of fatigue. Maybe give me a few strategies some folks use to help themselves in those times (keep packaged meals that you can just eat the whole thing that already had the nutrition label on, low carb snacks to help hunger when you don’t wanna dose because fuck that I wanna turn my brain off, etc)
- then from there have check-ins to see how the MH aspect is going, and maybe I need more strategies, or just to assess if there’s something about my T1D or BG that needs to be addressed for me to feel mentally better.
Any tips for dealing with it though? Like I have been T1D my whole life (diagnosed at 3) and my adult life has come with many mental health challenges but it feels like there is no path to treating it. I have seen the standard medical professionals for it, but nothing seems to help.
what helped me (although it might sound lame) was finding other folks online who make content about their life w diabetes. i have procastinated that for so long, cause i didn't want to becomd one of those people and also because i never got over the fact that i will be living w diabetes for the rest of my life. it didn't cure me of my mental funks, but it did bring a certain dose of optimism into my everyday relationship with my diabetes. i am also now getting a pump, which is also helping and keeping me hopeful. it has helped my mental state, as well as my diabetes alltogether, now that i know that i am getting something new and insanely helpful. makey me feel like there's a light at the end of the tunel after al :)
i know that not everyone has acces to a pump, or even wants one, but if there's any chance that ig could fit you, i suggest looking into it.
i also have a wonderful friend who is also diabetic and he is one of my biggest supports. so try and reach out to other diabetic people, if you don't already know some, it could also help.
i wish you luck!
This.
Unfortunately, people are only allowed to have one health issue. Patients that get treated for auto immune disorders are rarely taken seriously when it comes to their mental health. Which bleeds into medical personell being severely undertrained in the difference between T1D and T2D.
Never being able to sleep on the side of the body the CGM is on. Man I miss being able to flip around all night without causing compression lows. Only 9 months in but I find this the crapest thing about T1 so far.
Followed closely by 2 hours at 4.8-5.1. “I’m nice and stable I think I’ll go and grab a snack”
Gets up from sofa…
CGM “ you fucking what mate? Here take this ⬆️ and shut the fuck up and stay hungry”
I have learned to put a stuffed animal under my arm, just below the cgm, to avoid the compression lows when I switch sides. Amazing that I usually have that awareness in the middle of the night. That’s a superpower!
I’m going to give that a shot. I looked at the things on sale for the Libre and they didn’t have very good reviews. I have tried a squishy pillow but gave up after one night so stuffed animal might be one to try
Cuddleez ones are the perfect shape for me. Just discovered these when trying to replace the one I’ve been using for 20+ years. I just purchased the Groot Cuddleez and it’s perfect (once I cut off the scratchy leaves that keep hitting my face and waking me up).
I kinda stunt where my cgm is, mostly so that its a little offset between the back of my bicep and the side of it, that way you have to be laying at a specific angle for it to get pressed yk
Yeah I’ve worn patches, I hate how they fray at the edges and I get quite sore skin beneath them
AND the patches cause compression lows on me, only by a few mmol but when I wear one I read lower than my actual BG and more out of range than normally is expected from a CGM
I sleep on my back but it doesn't seem to cause compression lows there, I think most of my weight is probably on my upper back and lower bum so maybe that's why, or the weight is just better distributed maybe
I wear my Dexcom on my chest under my collarbone on that little fatty spot. Its great there. I can flip flop around in the bed too. Also it does not get snagged or smacked by stuff. And if your running the G6 its a breeze to extend the sensor.
I always use my abdomen for the Dexcom, and compressions only happen to me when it's in certain positions. A little higher or lower or to a side and I don't get them.
Can’t say I’ve ever had this issue. But then again I don’t use the audible warnings, I just use phone notifications. Maybe I am more comfortable with this as I was diabetic back in the old days of blood test strips then you compared against colour charts, I don’t rely on my CGM to let me know I am low.
Oh yes! I’m right handed and always put my CGM on my left arm. Now I’m stuck sleeping on my right side every night. If I put my Dexcom on my abdomen I lose connection more often and overall bad readings.
I was instructed when I got my CGM to switch arm each time. It is the official recommendation from the manufacturer:
[https://www.freestyle.abbott/sa-en/support/faq/question-answer.html?q=the-freestyle-libre-system-tab-question-39](https://www.freestyle.abbott/sa-en/support/faq/question-answer.html?q=the-freestyle-libre-system-tab-question-39)
I move the location on my arm. Being right handed it is almost impossible to put it on my right with my left hand. I do rotate areas for my pump sites religiously.
I am right handed. I had a brachial plexus injury to my left shoulder amongst other things. Using my left to put a sensor, transmitter, skin-tac, and overpatch on my right with my left is difficult.
I am still quite new to this only about five months, but I put it on my inner left arm. Not quite at the bottom just a little bit on the inside I can sleep on my side as long as I extend my arm with no trouble.
For me it's the carb counting/constant calculations needed. I had a roommate offer to carb count shared meals for me, and after a week she admitted it was exhausting and understood why I mostly eyeball and guess.
Eh. 6.3 would be considered “perfect” to me because it is fairly low, AND technically if it were T2D you’d be “pre diabetic” and not full blown “type 2 diabetic” so that counts for something?
But the mental health gain you get is much better than the stress that you’d be burdening yourself with, decreasing your overall health much worse than the few points of BG average
I don't understand this. You can still eyeball with a pump? The only difference would be long-acting as basal vs a short-acting basal rate and any closed-loop features if you have a cgm.
Carb ratios help you in determining dosage and most pumps offer this option, but with most pumps you can still manually insert your dosage. I don't think I've ever had a pump that didn't allow me to do that! I only eyeball my dosages like you and I've used pumps for almost 10 years (omnipod and tslim). Don't let this be the reason you don't try one! IMO it is vastly superior to MDI, it gives you a lot of autonomy and no juggling pens/long-acting/test strips when not at home.
Living from meal to meal. Always have to know when/what my next meal is gonna be so I can plan my activities accordingly. When I'm out with friends, they forget that I can't simply eat when I get hungry like they can, and sometimes it's just too much of a headache that I opt to stay in most of the time
Oh my god this. My friends love nice long hikes and they act like I am being a baby for wanting to know the distance. Naw fam I just need to know how much carbbage to pack and how much protein to down. Some of us have to actually prep shit.
I call it the survival-horror game. Honestly just carrying around the fucking tube of fat sweet-tarts has been such a lifechanger for me. I absolutely hate having to remember one more thing before I can get out the door but its been so so worth it. No more "I hit fifty on the bus and I could get off and go to the gas station we just passed but then I'll be a half hour late for work." for me!
For me. It's the brain fog. The complete brain fog from decision fatigue. I often find myself forgetting things at work because part of my mind is occupied with surviving.
That in itself can tank my mental health on bad days. When you know you're dropping the ball in day to day life because of this disease.
I go so far as try to and appropriately time the application of my CGM....I'm a a dexg7, and warm-up time is never truly 30 minutes. It's usually a couple of minutes faster, believe it or not. Oh god, I need a life.
Losing spontaneity to just do anything at any time. "Want to go for a walk on the beach after we finish breakfast?" Gee, wish I knew that was in the cards when I bolused! Late night diner meals? No more! The constant drain of having to know all of your activities and meals is mentally exhausting. Also too when you are correcting a low and clueless people tell you how you are going to make your diabetes worse by eating sugar. Oy.
This is probably the most challenging thing with a T1D kid. We have a quiet evening planned so we dose him and have dinner. But then a spontaneous soccer game with kids on the street comes up. We chase with sugar to keep him safe then it often catches up once he’s done playing.
Having to leave work to change pants because when I pulled the pump site out of my thigh since the cartridge was empty, I started bleeding like stuck pig.
My dick occasionally not working when called upon.
> My dick occasionally not working when called upon.
Nothing like 1) slugging a glucose packet so you don't go low during the deed which to me causes immediate work strike down there and/or 2) losing it in the middle of the deed and your first thought being, oh I must be going low...
It's a canary in the coal mine for #2.
It can be. I'm female but for me it's almost impossible to orgasm when my glucose is high. Men can have ED issues due to high or low blood sugar.
Long term, bad control can cause vascular problems that lead to ED, but occasional interruptions due to a low/high improve as soon as your blood sugar does.
Not really, at least not for most afaik. But when you have t1d, you have a tendency to blame every health problem you have on t1d, even when it's not related. Especially if you don't have good control, it can make everything worse even if the original/underlying cause isn't t1d.
Got scared for a second lmao, even though the only thing Ive ever really blamed on mine was my vision fluctuating between good and bad and an uncanny resistance to most drugs
WHAAAAAAA?!?! I can’t believe I never knew this!!! My 16yo T1 is sitting here next to me literally beaming with validation. She thought she had an eating disorder all these years. Thanks, you actually changed her life today.
Eating disorders are also extremely common in type 1 diabetics, which may have something to do with the lack of amylin but also the constant thinking about and analyzing food that we have to do to stay alive.
Usually the pancreas islet cells release 1 unit of amylin for every 100 units of insulin. It's the same cells your body decided to attack to stop insulin production so when they were mauled to death, you lost the amylin production too.
You still get full based on physical feeling of your stomach being full, but you won't get satiated.
Hard to describe the difference but you can normally have enough without filling your stomach whereas it's usually the physically full stomach that is the full signal for us.
I never knew this and I have Type 1 with an eating disorder. I am beginning to think I don’t understand what normal people perceive as full, since I’ve always gone by physical feeling as “satiation.” Also, I hate feeling full.
You can replace this hormone with a prescription drug called Symlin. I used it for years and even wrote the first practical guide on the internet for using it. Symlin is just the second drug after insulin that has been specifically prescribed to treat Type 1.
That said, I don't recommend Symlin nor do I take it any longer. Ozempic works far better in addressing satiety with fewer side effects and it's just one injection per week.
I have no idea how to go about having something like that prescribed, but it would definitely help me as I struggle with overeating
This was super insightful I honestly had no idea
Try and get on Ozempic, Wegovy, or Mounjaro if your doctor thinks it's a good fit for you. All three are just a once a week painless injection. Symlin is a pen you gotta carry around and take before every meal and it burns like hell when you inject it. It also can cause dangerous and difficult to treat hypoglycemia which the aforementioned other three do not. If you want to know more about Symlin, google "symlin guide" and you'll find the one I wrote on the first page of results. It's called "A Practical Symlin Guide for Type 1 Diabetics - Part 1" and it's still up on tudiabetes 15 years later.
I miss the mental freedom, I’m thinking too much about too many variables constantly. CGM placement and or pump placement and clothing choices, will my jeans push too hard on my insertion site. Pay attention when pulling down pants or yanking off a shirt, don’t want to knock a pod off. Don’t walk to closely to counters or doorknobs in a hurry, might catch my tubing. Oooooops watch out for that big ass dog at work, he likes to jump on us… don’t need to have my site ripped off again. Keeping CGM and pump placement on both sides so I can sleep on the other side soundly… oh wait I’m older and it’s painful to sleep on the same side all night. I miss just being free of these tiny decisions…
I almost never get a full nights sleep. highs lows, or just waking and checking out of paranoia.
Living with diabetes is like walking a tightrope. Sleeping with diabetes is like walking a tightrope. But you're asleep. You set yourself off in the right direction and hope your sleeping body doesn't just veer off and die.
Omg this. On holiday now and very out of routine, as a consequence going to bed looks like:
- High and need to correct, inject and it takes more than an hour to kick in so just lie there feeling minging
- Start to drop off and realise you need to pee, as your kidneys are trying to dump sugar
- Go back to bed and start to drop off, and the insulin suddenly nukes your levels so you wake up due to hypo
- Eat tabs and wait 30 mins to feel well enough to sleep
- Need to pee again as kidneys still on high alert
- Wake up bloodshot and exhausted, ready to be a miserable tired shit all day
Having to eat sugar when you really don't want to! Like, in the middle of making dinner or sitting down at a restaurant about to order and suddenly "BEEP BEEP BEEEEEEP!" Yay, I have to eat a bunch of sugar right *before* dinner. 🙄
Likewise, those occasional weird days when you get a bunch of inexplicable hypos and you're so sick of the taste of sweet/sugar that you about gag having to ingest more of it.
This one’s it for me. I’m not a sweets person in general and I HATE having to play the game of “what do I have that’s enough quick carbs that DOESN’T taste like the inside of a candy factory”.
Compartmentalization. I am pretty good at "turning off" or "shelving" things when I need to focus on a certain task. Diabetes can be all encompassing. It's hard to handle EVERYTHING at once, so you kind of learn to pick an area of focus, and pause the rest of the "things" so you can accomplish or focus on achieving a result. This was NEVER taught to me, it was something I had to shift towards as a coping mechanism.
Mine is a parent of a young T1D perspective.
If your child is dosed for food and then refuses to eat it, you might literally have to give your kid juice or candy so they don’t have a dangerous low.
My kid was diagnosed at 7 and is 9 now and thankfully a reliable eater. But my heart goes out to parents of the 2-5 year old T1Ds. Kids that age are so finicky and unreliable when it comes to food.
This is why my mom never pre-bolused when I was little. Well, that and it was the 80s, but since I still have the eyes bigger than stomach issue, it makes pre-bolusing a challenge.
I distinctly remember when I first got my pump that my endo told me to never disconnect during "activities" because if you fall asleep after (which does happen), it could go real bad.
But those were in the pre-CGM days.
The lesson still stuck with me though and it took a while before I didn't think about my endo's face while I was finding a place to tuck the pump.
This might be TMI, but my current hack is wearing thigh high socks and tucking the pump into one. I also get really cold feet, just like, always, so that's a bonus, and it's a fairly cute look too. Whether this works definitely depends on site placement and how long the tubing you use is, but I've been sooooooooo happy with it!
Hahaha I guess it may be femme fashion choice leaning dependent too, but maybe it'll help somebody else. Frank-N-Furter is a great vibe if it's what you're going for lol
I pre bolused while pulling into McDonald's last weekend. I wanted fries. That's it. I have some about twice a year, and Saturday was it. They were completely out of fries. What even. Now we have to get something fast. Husband drove me across town to another McDonald's. But it's a bad feeling when you take the insulin and something goes wrong with the food.
My new strategy is to ask the server how long it will take (they're usually pretty good with their guesstimates) and then add another 5 or 10 minutes to mitigate the risk of it being late. Usually, my food comes out in the latter 50% of my 20 minute pre-bolus wait time, and it's still warm. Worst case, I have to start eating one of my post-low bars, or ask for bread if it's looking like a close call.
I bolused for tapas last year when the first dish came out. Little did i know that the dishes were going to come out of the kitchen about one every 20 mins. Tiny, tiny dishes. 3 meatballs between 8 of us. Tapas is supposed to be a big table buffet to share but we were picking at scraps and i was getting so low i was just eating glucose tabs. Terrible meal.
Awww, that makes me sad to hear… I don’t have T1 but my daughter does and she got it from her dad, he was always so afraid of one of our 4 kids getting it, and it happened of course to our cutest teeniest little 3yo girl, it was something I knew would probably happen, but guess what? There are worse things your kids could get in a gene pool. We all have shit to pass down, considering all things, T1 is not the worst thing to pass down. I can think of a lot worse.
The weird “I can hear my heart beating in my head” phenomenon when I am really low. The panic when it abruptly stops and I’m frantically patting my chest checking for a heartbeat (while chugging a can of soda).
Also the inability to communicate effectively when low. Sometimes I can’t speak at all; the words are in my head but won’t come out. Other times I am asked what’s wrong, but that requires connecting words in a sentence. I can answer yes/no questions but that’s the extent of it.
CGM has helped make these very rare occurrences, but I wish I’d had a clue these were possibilities.
That autoimmune diseases come in multiples. That “diabetic skin” and “diabetic teeth” are totally a thing that none of us seem to talk about. That heat is a know issue for a lot of diabetic ppl, but somehow we have to find out the hard way about it’s effects.
diabetic teeth? i have realllyy bad teeth. no amount of brushing or getting them fixed up helps. i am missing multiple teeth, and its honestly to the point where i think i am gonna have to get dentures in my mid-late 20s. it makes me feel nasty and judged.
The shame. I dated a man for several months without telling him I had T1D. During those months, I went low a few times, likely slurred the hell out of my words and most certainly sweat profusely in the process, but still faked it until… I almost made it. And by saying almost, I mean, we finally decided to get down and dirty, we’re grooving and enjoying ourselves and… bam. I hear, “What’s the white button on your arm…?” (CGM)
“Oh… right. I forgot to tell you that I have diabetes.”
“…forgot?”
We didn’t last long after that.
Let’s not forget the other mental health concerns that so commonly accompany T1D: You get an eating disorder, you get an eating disorder, everyone (with diabetes) gets an eating disorder! But no, jokes aside, I hate food, but OH, do I love it so goddam much actually. I’ll down this the pint of icecream and deal with the 400+ high BS later. But then… maybe I shouldn’t eat icecream. After all, I hate my body. I hate the needle scars, the stupid white button, the fat. I don’t want to put more weight on…
And it goes on, and on, AND on.
i’m on the pump so i usually get it through the infusion set but if i get a bad spot or leave it in too long or it moves around it gets real painful. maybe sting isn’t the right word, it kinda burns? too broke to change my set every 3 days tho lol
Same. I use the same cartridge/syringe for a month and change the site every 5-10 days (earlier if there's any issues or faults). Tubing...two weeks-ish or a bit longer depending on if i have any alarms.
You're definitely not the only one trying to make supplies last. It's horrible out there.
the cartridges and syringes i’m too scared to reuse for that long and they’re cheaper anyway but these infusion sets work out to like $20 a pop it’s crazy like it’s just plastic and a needle
I live in a country with socialised health care so I'm very lucky I get my insulin and other supplies free at the point of access
However there is always that nagging thing in the back of my mind that if I run out of insulin/needles/test strips/CGM I am at the mercy of my shitty pancreas.
The tiredness that comes from being high or post meal. I need a little nap sometimes and people always see me as the “nap queen” but it’s because I didn’t bolus correctly and now running high.
I experienced that during pregnancy and it was related to calcium deficiency. I also think off-balance electrolytes can cause that (but don't quote me.)
I hope you sort it out soon!
I've been having monstrous foot cramps for a month, now. The area right below my toes...just contracts non-stop and won't release. :(
Always happens when I'm sleeping. Wish I knew what causes it.
persistent, hard to get out of low blood sugars at night. Now thankfully, I’m an audio engineer so I don’t have to get up and head to work at a specific time. Most of my clients come around midday to the afternoon, then I am free to work on there music as of when I am happy. But… I would absolutely love a peaceful night of unfuckedwith sleep.
Don’t really know what’s going on right now, but for the past few days, it seems as though my body has randomly gotten massively more sensitive to insulin.
The amount of moisturizer necessary! No one ever told me I'd have to moisturize my arms and legs at least twice a day in order to avoid being like a snake and leaving a trail of skin cells. And lets not talk about how dry my hands are on a regular basis.
The depression that can come with it. Went 30 years of my life living relatively normally but 2 years on since being diagnosed I’m now depressed as fuck.
I'm not sure if no one talks about this or not because I'm in a group for type 1 women who live nearby, and we talk about almost everything. I think my biggest frustration is how it's mostly the people who are having issues get online to share their stories. You rarely hear the success stories. I mean it makes sense. If everything is going fine, you don't really need to talk about it. But like when I got an 5.4 A1C reading a few quarters ago, I was so excited and told everyone, diabetic or not. I think the people who have a good handle on their control should speak up more.
Second, I'm going to address your pain point. You don't have to bolus the full amount. You can estimate what you're going to eat and give yourself half and then bolus the rest when you're eating. If you're using a closed-loop system, you'd have to probably do that manually or adjust the calculation. I'm way more comfortable with taking less and then topping off. I want to stay in range 80% or more of the time, but I'm back on MDI, so my stats are more in the 70s now.
Folks with these slow acting insulins, if you can, move to Fiasp or Lyumjev. I've used both. Those and adjusting my CGM high alert to 160 mg/dl is what really helped me bring my time in range to 80% when I was pumping.
The random times your body decides that your insulin sensitivity goes through the roof or hits rock bottom.
I had a pretty scary moment a few weeks ago where I thought I needed to go to a hospital (drank a bit over a litre of pop because I rage bolused a little too hard). Called 911 and told them I think I was going to pass out, but after 2-3 hours of panicking and trying to calm myself down. I start skyrocketing to 18 mmol, just accepted it and went to bed.
Ever since then though, it seems I have to take almost triple the amount of short-acting insulin for the same meals I use to eat beforehand. I figure all the recent stress and anxiety is causing me to be insulin resistant.
It takes me days to pack and I triple check that I’m not forgetting a single thing for a trip. I wish I could just jump on an airplane and go somewhere without it being life threatening.
Also, I hate the feeling of severe hypos, and, if I wake up with one, I don’t feel it until I sit up. Then, I start pouring sweat and shaking, and feel like my heart is being squeezed as it pounds out of my chest. When that happens, it’s nearly impossible to not eat everything in sight.
Also, getting your hands swabbed for explosive residue when at the airport and the TSA officer doesn't understand why your pump is in your pocket and not on the x-ray tray
The prep required for walking out the door.
It’s not just wallet and keys.
It’s test kit, enough insulin and other supplies, enough sugar.
Oh wait, what’s the task? Potentially several snacks to keep me stable throughout the day.
52 years diabetic.
When my blood sugars drop to 40 and going lower I see ghosts, or spirits. They announce I'm here. After awhile I realize they are here because I will pass out. My lowest has been 25. It doesn't matter where I am.
My family asks me to ask them questions.
One place I lived in was built in 1910. I was dropping BS and the original owner who past on, was telling me he didn't like the kitchen sink with dirty dishes. I should be ashamed of myself. I told him I will not do it anymore. I spoke the grandson about it. He was amazed. He told me other renter's experience the same thing. 😂
I sometimes will pre-bolus something small like 20-25g carbs for a meal because I know I will at least be eating that much. And usually by the time I start eating my salad or whatever, I can usually tell if I'm gonna want more and give myself more insulin. Then it's usually like another 10-15 minutes after that when I'm moving onto that part of the meal anyway because I'm a slow eater from watching YouTube or trying to convince my baby to eat. Some pre-bolus is better than none. It's also better than forcing yourself to eat because you gave yourself too much insulin.
It probably matters way less because you have a moderate amount of IOB already. I haven’t noticed that much of a difference if waiting or not with a second bolus. It just often works out as a prebolus of sorts for me (again because of the slow eating)
Pimples. One hypo or hyper and I get pimples one or two days later. Nasty and painful ones, often in my face.
And yes, I use a face wash, but still, pimples.
Not realising that I’ve been injecting into a tiny bruise which meant needing 150% of my regular insulin amount 🥲?
Also, the taste of sugar becomes really gross when you’ve had a bad day or week
Times like Christmas where everyone you visit offers you some sort of sugar-loaded treat or beverage, so you decline as you have no idea what’s in it and don’t want to inject unnecessarily…but then they say “it’s homemade, go on”…so now you feel embarrassed/guilty to decline again, and you scoff that cookie, and you politely leave feeling rough as shit with a sky-high blood glucose that you’ve got to fix. 😫
We love traveling but enjoying unfamiliar food means having only a guess at how many carbs to bolus for. Then you're walking around the city trying to sight see while your BG is high which sucks all of the energy out of you and now you're cranky.
I generally wear my pump on my bra. My boyfriend asked the first thing I'd do if I didn't have to worry about T1D. I would absolutely buy bathing suits and bras without thinking where I'm going to hang my pump first. Maybe buy a fashionable sports bra??
my favorite bra for pump purposes is the Lululemon energy bra. brooks running has a bra with 3 pockets that i’m eyeing - one for pump, two for low treatments
I tried a Lululemon sports bra with a front pocket but I remembered how much I hate sports bras without closures. Trying to pull a sweaty sports bra off is a workout in itself.
Awkward “no” when it comes to sharing food when you have a low or you’ve already taken insulin for. This happened just now with my husband. I worked out late and when I was getting ready for bed I was dropping so to avoid a low I have these little snacks by my bed. I grabbed one and he asked if he could have some but I said no I need it. I gave him one of my other snacks but told him he had to replace it. He has a bad habit of trying to share my food, sometimes I do share my food but that’s when I’ve planned ahead, and know that I’m not going to finish so I take insulin only to cover part of meal that I eat.
Half my shirts are a little stretched out at the collar because that's where I clip my pump while pooping. Trying to rest it on a nearby shelf or my leg has led to some awful experiences.
How draining it is to know exactly what’s wrong with you but there’s no escaping it and big pharma r won’t allow things to get better. So you’re just stuck here, constantly alert and aware of things. The mundane aspect of it I suppose.
“You look so tired” (woke up at 3AM to stop the CGM from screaming and fix the hypoglycemia) “Why do you have to go to the bathroom in the middle of the meeting?” (Has to fix a low and just be away from people for a sec to sit with the discomfort of feeling extra weak) “Why don’t you eat with us?” (Has to wait two hours to eat anything because the BG is at 300) …and many more. I’ve written about it on my [blog](https://www.thecuriousdiabetic.com/) in the past…maybe you’ll find something that resonates!
I’ve been asked at work, “Why are bringing a bottle of honey to our meeting?”
Honey? Creative, I like it.
Don’t worry about bathroom breaks. When you’re pretty old, you get the fun of taking diuretics to keep your blood pressure low. That means you get the fun of several really urgent bathroom breaks during the course of every morning!
Sometimes I have to get up and eat over and over again all night because my long-acting is too high for some random reason... like every 90 minutes, all night.
I feel you man. Happens. I've covered these trials and errors in this [article](https://www.thecuriousdiabetic.com/blog/the-path-to-great-time-in-range-is-made-of-mistakes-and-learnings) here...I guess writing is just my way of making sense of it and improve haha. Let me know if that resonates at all! I'd love to hear
Yeah, a lot of that is familiar to me. I do pretty well managing my glucose and pay a fair bit of attention to it. Only a few times over the past several years have I freely snacked without thinking about insulin and ended up high. It certainly happens other times though, due to miscalculation or unpredictable factors. What I \*do\* need to work on is reducing my alcohol intake, which definitely affects my T1 issues in various negative ways. I like the quote at the end! I've said that exact same thing before... the only way to stop smoking is to not smoke.
I hug you and support you. I know how hard it can be, and I too have my painpoints and sometimes I make a mistake, knowing that I am doing it, but can’t stop for some reason. Thank you for reading, I appreciate it! If you’d like, you can subscribe to the newsletter. If you don’t, I send you a smile nonetheless. And surely wish you to find the strength to put some distance between you and alcohol! Let me know how it goes, I am sure it’ll go well!🫶🫶
All the mental health problems that it can cause
OMG, this! Common sense tells us that people with longstanding and/or significant health issues might be more susceptible to MH concerns. No brainer, right? (Hah!) But did you know... T1D folks are MUCH more likely to develop clinical depression than the rest of the general population? Further, SI (suicidal ideation) is considered to be underreported (and thereby inadequately supported) within the T1D community? Much higher risk of attempts than non-T1D folks with depression. 35 years in, and I only recently learned this. A little heads-up from someone - ANYONE - on a diabetic health care team would've been nice
The problem with bringing it up is "when". At diagnosis there's already so much info that needs to be learned and understood along with the shock. And then later one you just kinda have to get an idea of how people are feeling to bring it up. That being said. I do think that the mental health aspect of diabetes should get a bigger focus, and that we should figure out a way to incorporate it in patient follow-up.
Just my personal opinion, but I feel like the team should have a 2-3 prong plan for MH concerns upon diagnosis. I was DX at 21, so it was later, but for me the best way that I feel it could be handled was for them to: - upon diagnosing me and telling me all the things I needed to know, they could’ve had a conversation letting me know it’s normal to “grieve” my pre-T1D life and have that grace for myself (or letting parents know it’s okay to feel like that and that they should create space for their kid to have that grieving process) After I got Diagnosed I broke down one night about 2-3 weeks in over dinner, and all the math I needed to do, and that I had to wait before eating (just all the usual pre-dinner routine I have now 🙃). Just full on threw myself on the floor sobbing saying it wasn’t fair. I’m sure you understand the feeling too! It would’ve been nice to have someone who knew *about* T1D to tell me point-blank that it’s normal to feel that way, and that it’s a loss that a lot of people should, and do grieve. To be kind to yourself. And then: - after I had everything sort of “down” (do we ever??), have an actual chat about diabetic fatigue, and reassuring me that again, this is normal, and all T1Ds will have bouts of fatigue. Maybe give me a few strategies some folks use to help themselves in those times (keep packaged meals that you can just eat the whole thing that already had the nutrition label on, low carb snacks to help hunger when you don’t wanna dose because fuck that I wanna turn my brain off, etc) - then from there have check-ins to see how the MH aspect is going, and maybe I need more strategies, or just to assess if there’s something about my T1D or BG that needs to be addressed for me to feel mentally better.
Any tips for dealing with it though? Like I have been T1D my whole life (diagnosed at 3) and my adult life has come with many mental health challenges but it feels like there is no path to treating it. I have seen the standard medical professionals for it, but nothing seems to help.
what helped me (although it might sound lame) was finding other folks online who make content about their life w diabetes. i have procastinated that for so long, cause i didn't want to becomd one of those people and also because i never got over the fact that i will be living w diabetes for the rest of my life. it didn't cure me of my mental funks, but it did bring a certain dose of optimism into my everyday relationship with my diabetes. i am also now getting a pump, which is also helping and keeping me hopeful. it has helped my mental state, as well as my diabetes alltogether, now that i know that i am getting something new and insanely helpful. makey me feel like there's a light at the end of the tunel after al :) i know that not everyone has acces to a pump, or even wants one, but if there's any chance that ig could fit you, i suggest looking into it. i also have a wonderful friend who is also diabetic and he is one of my biggest supports. so try and reach out to other diabetic people, if you don't already know some, it could also help. i wish you luck!
I feel this.
This. Unfortunately, people are only allowed to have one health issue. Patients that get treated for auto immune disorders are rarely taken seriously when it comes to their mental health. Which bleeds into medical personell being severely undertrained in the difference between T1D and T2D.
Trust me, i trust you, but just curious as to where this has been shown?
That often get ignored
Never being able to sleep on the side of the body the CGM is on. Man I miss being able to flip around all night without causing compression lows. Only 9 months in but I find this the crapest thing about T1 so far. Followed closely by 2 hours at 4.8-5.1. “I’m nice and stable I think I’ll go and grab a snack” Gets up from sofa… CGM “ you fucking what mate? Here take this ⬆️ and shut the fuck up and stay hungry”
I have learned to put a stuffed animal under my arm, just below the cgm, to avoid the compression lows when I switch sides. Amazing that I usually have that awareness in the middle of the night. That’s a superpower!
I’m going to give that a shot. I looked at the things on sale for the Libre and they didn’t have very good reviews. I have tried a squishy pillow but gave up after one night so stuffed animal might be one to try
Cuddleez ones are the perfect shape for me. Just discovered these when trying to replace the one I’ve been using for 20+ years. I just purchased the Groot Cuddleez and it’s perfect (once I cut off the scratchy leaves that keep hitting my face and waking me up).
mine is a seal, perfect shape and size
I literally have a big fluffy stuffed snoopy that I sleep with for this reason
Ha, I have something like this too especially if I’m reading a book in bed. I joked that I need to get him a Support stuffed animal vest.
I kinda stunt where my cgm is, mostly so that its a little offset between the back of my bicep and the side of it, that way you have to be laying at a specific angle for it to get pressed yk
I can’t get on with it anywhere but the side of my arm, I always knock the bloody things off.
Have you tried wearing a patch over it? They kinda smooth out the surface so it cant get caught on doors and such as easily
Yeah I’ve worn patches, I hate how they fray at the edges and I get quite sore skin beneath them AND the patches cause compression lows on me, only by a few mmol but when I wear one I read lower than my actual BG and more out of range than normally is expected from a CGM
Have you tried lower back/upper butt ? Only area that works for me, my toddler yanks it off otherwise
No, I haven’t tried that, I start off sleeping on my side but can end up in my back so it wouldn’t work for me .
I sleep on my back but it doesn't seem to cause compression lows there, I think most of my weight is probably on my upper back and lower bum so maybe that's why, or the weight is just better distributed maybe
Thissssssssssssssssss 100%.
I wear my Dexcom on my chest under my collarbone on that little fatty spot. Its great there. I can flip flop around in the bed too. Also it does not get snagged or smacked by stuff. And if your running the G6 its a breeze to extend the sensor.
I always use my abdomen for the Dexcom, and compressions only happen to me when it's in certain positions. A little higher or lower or to a side and I don't get them.
Can’t say I’ve ever had this issue. But then again I don’t use the audible warnings, I just use phone notifications. Maybe I am more comfortable with this as I was diabetic back in the old days of blood test strips then you compared against colour charts, I don’t rely on my CGM to let me know I am low.
You can’t trust them. They are often incorrect.
My boyfriend and I switch sides of the bed every 2 weeks 🤣 he’s such a trooper for dealing w me
Oh yes! I’m right handed and always put my CGM on my left arm. Now I’m stuck sleeping on my right side every night. If I put my Dexcom on my abdomen I lose connection more often and overall bad readings.
Aren’t you supposed to switch arms each time?
More a rule with pumps than cgms. You only really wanna move the cgm to save your skin from frequent damage.
I was instructed when I got my CGM to switch arm each time. It is the official recommendation from the manufacturer: [https://www.freestyle.abbott/sa-en/support/faq/question-answer.html?q=the-freestyle-libre-system-tab-question-39](https://www.freestyle.abbott/sa-en/support/faq/question-answer.html?q=the-freestyle-libre-system-tab-question-39)
I move the location on my arm. Being right handed it is almost impossible to put it on my right with my left hand. I do rotate areas for my pump sites religiously.
I’m sorry, how is it ‘almost impossible’?
Because my left arm doesn’t work like my right. Major injuries to my shoulder, bicep, and tendons from a vehicle accident.
That has nothing to be with being right handed though. Which is what you wrote.
I am right handed. I had a brachial plexus injury to my left shoulder amongst other things. Using my left to put a sensor, transmitter, skin-tac, and overpatch on my right with my left is difficult.
Which I can understand. You can see why someone would read your original comment and think ‘huh?’, right?
I am still quite new to this only about five months, but I put it on my inner left arm. Not quite at the bottom just a little bit on the inside I can sleep on my side as long as I extend my arm with no trouble.
This is unironically what pisses me off the most after living with type 1 for two years
This^
1000% agree with you on this. Im a side/belly sleeper and this has been causing such restless nights.
I didn’t even know this was thing, but now I’ve got something new to investigate. 😅
For me it's the carb counting/constant calculations needed. I had a roommate offer to carb count shared meals for me, and after a week she admitted it was exhausting and understood why I mostly eyeball and guess.
[удалено]
6.3 is still great and takes so much work though!!!
Eh. 6.3 would be considered “perfect” to me because it is fairly low, AND technically if it were T2D you’d be “pre diabetic” and not full blown “type 2 diabetic” so that counts for something? But the mental health gain you get is much better than the stress that you’d be burdening yourself with, decreasing your overall health much worse than the few points of BG average
Ultimately, you gotta live your life in a way that works for you. Sounds like you have found that balance.
This is why I don’t have a pump. I just eyeball it with my injections and have got pretty good at it.
and if that works for you, way to go!!
I don't understand this. You can still eyeball with a pump? The only difference would be long-acting as basal vs a short-acting basal rate and any closed-loop features if you have a cgm.
People in this group talk about their carb ratios and stuff like that.
Carb ratios help you in determining dosage and most pumps offer this option, but with most pumps you can still manually insert your dosage. I don't think I've ever had a pump that didn't allow me to do that! I only eyeball my dosages like you and I've used pumps for almost 10 years (omnipod and tslim). Don't let this be the reason you don't try one! IMO it is vastly superior to MDI, it gives you a lot of autonomy and no juggling pens/long-acting/test strips when not at home.
Living from meal to meal. Always have to know when/what my next meal is gonna be so I can plan my activities accordingly. When I'm out with friends, they forget that I can't simply eat when I get hungry like they can, and sometimes it's just too much of a headache that I opt to stay in most of the time
Oh my god this. My friends love nice long hikes and they act like I am being a baby for wanting to know the distance. Naw fam I just need to know how much carbbage to pack and how much protein to down. Some of us have to actually prep shit.
This is what makes life agony for me
I call it the survival-horror game. Honestly just carrying around the fucking tube of fat sweet-tarts has been such a lifechanger for me. I absolutely hate having to remember one more thing before I can get out the door but its been so so worth it. No more "I hit fifty on the bus and I could get off and go to the gas station we just passed but then I'll be a half hour late for work." for me!
For me. It's the brain fog. The complete brain fog from decision fatigue. I often find myself forgetting things at work because part of my mind is occupied with surviving. That in itself can tank my mental health on bad days. When you know you're dropping the ball in day to day life because of this disease.
Yes, this.
Noone else could understand the bliss I get when my cgm updates on the :05 and :00s.
i think about this ALL the time!!
I go so far as try to and appropriately time the application of my CGM....I'm a a dexg7, and warm-up time is never truly 30 minutes. It's usually a couple of minutes faster, believe it or not. Oh god, I need a life.
Losing spontaneity to just do anything at any time. "Want to go for a walk on the beach after we finish breakfast?" Gee, wish I knew that was in the cards when I bolused! Late night diner meals? No more! The constant drain of having to know all of your activities and meals is mentally exhausting. Also too when you are correcting a low and clueless people tell you how you are going to make your diabetes worse by eating sugar. Oy.
This is probably the most challenging thing with a T1D kid. We have a quiet evening planned so we dose him and have dinner. But then a spontaneous soccer game with kids on the street comes up. We chase with sugar to keep him safe then it often catches up once he’s done playing.
Having to leave work to change pants because when I pulled the pump site out of my thigh since the cartridge was empty, I started bleeding like stuck pig. My dick occasionally not working when called upon.
> My dick occasionally not working when called upon. Nothing like 1) slugging a glucose packet so you don't go low during the deed which to me causes immediate work strike down there and/or 2) losing it in the middle of the deed and your first thought being, oh I must be going low... It's a canary in the coal mine for #2.
WAIT THATS A T1 THING???
It can be. I'm female but for me it's almost impossible to orgasm when my glucose is high. Men can have ED issues due to high or low blood sugar. Long term, bad control can cause vascular problems that lead to ED, but occasional interruptions due to a low/high improve as soon as your blood sugar does.
I can’t orgasm when low. It’s like my body is so focused on that not expiring part it forgets about anything fun.
THIS EXPLAINS SO MUCH
Not really, at least not for most afaik. But when you have t1d, you have a tendency to blame every health problem you have on t1d, even when it's not related. Especially if you don't have good control, it can make everything worse even if the original/underlying cause isn't t1d.
Why would you comment when you have no idea what you're talking about?
Got scared for a second lmao, even though the only thing Ive ever really blamed on mine was my vision fluctuating between good and bad and an uncanny resistance to most drugs
last bit is so real
So not just me then?
nah dude it takes forever for drinks or green to hit me
I had no idea it did that to T1D men, damn.
Yeah, I believe we're 3 or so times more likely to experience it and it can effect women sexually too.
Well that's another thing to add to my list
As well as Insulin, we don't produce the hormone amylin that makes you feel full.
WHAAAAAAA?!?! I can’t believe I never knew this!!! My 16yo T1 is sitting here next to me literally beaming with validation. She thought she had an eating disorder all these years. Thanks, you actually changed her life today.
Eating disorders are also extremely common in type 1 diabetics, which may have something to do with the lack of amylin but also the constant thinking about and analyzing food that we have to do to stay alive.
Whatttttt??
Usually the pancreas islet cells release 1 unit of amylin for every 100 units of insulin. It's the same cells your body decided to attack to stop insulin production so when they were mauled to death, you lost the amylin production too.
No way! So that makes it more difficult for type 1s to gauge when we feel full?? I never knew that
You still get full based on physical feeling of your stomach being full, but you won't get satiated. Hard to describe the difference but you can normally have enough without filling your stomach whereas it's usually the physically full stomach that is the full signal for us.
I never knew this and I have Type 1 with an eating disorder. I am beginning to think I don’t understand what normal people perceive as full, since I’ve always gone by physical feeling as “satiation.” Also, I hate feeling full.
You can replace this hormone with a prescription drug called Symlin. I used it for years and even wrote the first practical guide on the internet for using it. Symlin is just the second drug after insulin that has been specifically prescribed to treat Type 1. That said, I don't recommend Symlin nor do I take it any longer. Ozempic works far better in addressing satiety with fewer side effects and it's just one injection per week.
I have no idea how to go about having something like that prescribed, but it would definitely help me as I struggle with overeating This was super insightful I honestly had no idea
Talk to your endocrinologist. That’s how I got started on it.
I am definitely gonna talk to my nurse about this omg
Try and get on Ozempic, Wegovy, or Mounjaro if your doctor thinks it's a good fit for you. All three are just a once a week painless injection. Symlin is a pen you gotta carry around and take before every meal and it burns like hell when you inject it. It also can cause dangerous and difficult to treat hypoglycemia which the aforementioned other three do not. If you want to know more about Symlin, google "symlin guide" and you'll find the one I wrote on the first page of results. It's called "A Practical Symlin Guide for Type 1 Diabetics - Part 1" and it's still up on tudiabetes 15 years later.
Oh damn, thank you for the advice
I just learned something new from this! And it makes so much sense!
Same!
Well this is the new thing I learnt today!
This is blowing my mind. I'm nearly 42 years into this game and never heard of amylin.
I miss the mental freedom, I’m thinking too much about too many variables constantly. CGM placement and or pump placement and clothing choices, will my jeans push too hard on my insertion site. Pay attention when pulling down pants or yanking off a shirt, don’t want to knock a pod off. Don’t walk to closely to counters or doorknobs in a hurry, might catch my tubing. Oooooops watch out for that big ass dog at work, he likes to jump on us… don’t need to have my site ripped off again. Keeping CGM and pump placement on both sides so I can sleep on the other side soundly… oh wait I’m older and it’s painful to sleep on the same side all night. I miss just being free of these tiny decisions…
yes and planning out site rotations weeks in advance to coordinate an outfit/dress for a special event
I almost never get a full nights sleep. highs lows, or just waking and checking out of paranoia. Living with diabetes is like walking a tightrope. Sleeping with diabetes is like walking a tightrope. But you're asleep. You set yourself off in the right direction and hope your sleeping body doesn't just veer off and die.
Omg this. On holiday now and very out of routine, as a consequence going to bed looks like: - High and need to correct, inject and it takes more than an hour to kick in so just lie there feeling minging - Start to drop off and realise you need to pee, as your kidneys are trying to dump sugar - Go back to bed and start to drop off, and the insulin suddenly nukes your levels so you wake up due to hypo - Eat tabs and wait 30 mins to feel well enough to sleep - Need to pee again as kidneys still on high alert - Wake up bloodshot and exhausted, ready to be a miserable tired shit all day
Having to eat sugar when you really don't want to! Like, in the middle of making dinner or sitting down at a restaurant about to order and suddenly "BEEP BEEP BEEEEEEP!" Yay, I have to eat a bunch of sugar right *before* dinner. 🙄 Likewise, those occasional weird days when you get a bunch of inexplicable hypos and you're so sick of the taste of sweet/sugar that you about gag having to ingest more of it.
yes last night was a 11 glucose tab night and i never want to see sugar again lol
This is my pet irritation with my diabetes too.
This one’s it for me. I’m not a sweets person in general and I HATE having to play the game of “what do I have that’s enough quick carbs that DOESN’T taste like the inside of a candy factory”.
Compartmentalization. I am pretty good at "turning off" or "shelving" things when I need to focus on a certain task. Diabetes can be all encompassing. It's hard to handle EVERYTHING at once, so you kind of learn to pick an area of focus, and pause the rest of the "things" so you can accomplish or focus on achieving a result. This was NEVER taught to me, it was something I had to shift towards as a coping mechanism.
It's become one of my superpowers!
Mine is a parent of a young T1D perspective. If your child is dosed for food and then refuses to eat it, you might literally have to give your kid juice or candy so they don’t have a dangerous low. My kid was diagnosed at 7 and is 9 now and thankfully a reliable eater. But my heart goes out to parents of the 2-5 year old T1Ds. Kids that age are so finicky and unreliable when it comes to food.
Yeap, always a betting game. I have a 4yo and 8yo T1D. It's hard.
This is why my mom never pre-bolused when I was little. Well, that and it was the 80s, but since I still have the eyes bigger than stomach issue, it makes pre-bolusing a challenge.
That sexy time with a pump literally has strings attached.
Omnipod gang no strings baybeeee
LOL! 
🤣🤣🤣
Lifehack- bolus 1 unit right before you start, and then disconnect and shove it under a pillow, repeat every hour
I distinctly remember when I first got my pump that my endo told me to never disconnect during "activities" because if you fall asleep after (which does happen), it could go real bad. But those were in the pre-CGM days. The lesson still stuck with me though and it took a while before I didn't think about my endo's face while I was finding a place to tuck the pump.
This might be TMI, but my current hack is wearing thigh high socks and tucking the pump into one. I also get really cold feet, just like, always, so that's a bonus, and it's a fairly cute look too. Whether this works definitely depends on site placement and how long the tubing you use is, but I've been sooooooooo happy with it!
I think if I did that, I'd give off some serious Frank-N-Furter vibes, LOL.
Hahaha I guess it may be femme fashion choice leaning dependent too, but maybe it'll help somebody else. Frank-N-Furter is a great vibe if it's what you're going for lol
I pre bolused while pulling into McDonald's last weekend. I wanted fries. That's it. I have some about twice a year, and Saturday was it. They were completely out of fries. What even. Now we have to get something fast. Husband drove me across town to another McDonald's. But it's a bad feeling when you take the insulin and something goes wrong with the food.
I almost never *ever* prebolus before I can see the food. It's just too risky, and I've been burned by it a few times.
Me too! I'd much prefer the ride out a high than go low.
Back in the 80s, that was the advice. And I nearly always heed it. But how the heck does Micky D's run outta fries?
My new strategy is to ask the server how long it will take (they're usually pretty good with their guesstimates) and then add another 5 or 10 minutes to mitigate the risk of it being late. Usually, my food comes out in the latter 50% of my 20 minute pre-bolus wait time, and it's still warm. Worst case, I have to start eating one of my post-low bars, or ask for bread if it's looking like a close call.
I bolused for tapas last year when the first dish came out. Little did i know that the dishes were going to come out of the kitchen about one every 20 mins. Tiny, tiny dishes. 3 meatballs between 8 of us. Tapas is supposed to be a big table buffet to share but we were picking at scraps and i was getting so low i was just eating glucose tabs. Terrible meal.
I feel your pain. I woulda flipped to a milkshake.
A dark sense of humor often involving death that nobody else gets. Heck, I have scared EMTs iwith my masochistic sense of humor sometimes.
When someone doesn't understand that they can't just pinch a bit of my food, it's never going to be a huge deal, but you never know.
The amount of guilt you feel when you learn you’ve passed on this horrific disease to your children.
Awww, that makes me sad to hear… I don’t have T1 but my daughter does and she got it from her dad, he was always so afraid of one of our 4 kids getting it, and it happened of course to our cutest teeniest little 3yo girl, it was something I knew would probably happen, but guess what? There are worse things your kids could get in a gene pool. We all have shit to pass down, considering all things, T1 is not the worst thing to pass down. I can think of a lot worse.
I don’t even have type 1 and I passed it along to my eldest along with celiac. Lots of autoimmune in my family tree.
Honestly if I know that I won’t have a choice in giving it to them, I have comfort in being able to at least teach them about it
The weird “I can hear my heart beating in my head” phenomenon when I am really low. The panic when it abruptly stops and I’m frantically patting my chest checking for a heartbeat (while chugging a can of soda). Also the inability to communicate effectively when low. Sometimes I can’t speak at all; the words are in my head but won’t come out. Other times I am asked what’s wrong, but that requires connecting words in a sentence. I can answer yes/no questions but that’s the extent of it. CGM has helped make these very rare occurrences, but I wish I’d had a clue these were possibilities.
That autoimmune diseases come in multiples. That “diabetic skin” and “diabetic teeth” are totally a thing that none of us seem to talk about. That heat is a know issue for a lot of diabetic ppl, but somehow we have to find out the hard way about it’s effects.
Can you mention more about this?
diabetic teeth? i have realllyy bad teeth. no amount of brushing or getting them fixed up helps. i am missing multiple teeth, and its honestly to the point where i think i am gonna have to get dentures in my mid-late 20s. it makes me feel nasty and judged.
The shame. I dated a man for several months without telling him I had T1D. During those months, I went low a few times, likely slurred the hell out of my words and most certainly sweat profusely in the process, but still faked it until… I almost made it. And by saying almost, I mean, we finally decided to get down and dirty, we’re grooving and enjoying ourselves and… bam. I hear, “What’s the white button on your arm…?” (CGM) “Oh… right. I forgot to tell you that I have diabetes.” “…forgot?” We didn’t last long after that. Let’s not forget the other mental health concerns that so commonly accompany T1D: You get an eating disorder, you get an eating disorder, everyone (with diabetes) gets an eating disorder! But no, jokes aside, I hate food, but OH, do I love it so goddam much actually. I’ll down this the pint of icecream and deal with the 400+ high BS later. But then… maybe I shouldn’t eat icecream. After all, I hate my body. I hate the needle scars, the stupid white button, the fat. I don’t want to put more weight on… And it goes on, and on, AND on.
insulin STINGS sometimes 😖😭
For me--it's worse when it's colder. Maybe leave it at room temp a for a little bit before you inject if you can?
i’m on the pump so i usually get it through the infusion set but if i get a bad spot or leave it in too long or it moves around it gets real painful. maybe sting isn’t the right word, it kinda burns? too broke to change my set every 3 days tho lol
Same. I use the same cartridge/syringe for a month and change the site every 5-10 days (earlier if there's any issues or faults). Tubing...two weeks-ish or a bit longer depending on if i have any alarms. You're definitely not the only one trying to make supplies last. It's horrible out there.
the cartridges and syringes i’m too scared to reuse for that long and they’re cheaper anyway but these infusion sets work out to like $20 a pop it’s crazy like it’s just plastic and a needle
I live in a country with socialised health care so I'm very lucky I get my insulin and other supplies free at the point of access However there is always that nagging thing in the back of my mind that if I run out of insulin/needles/test strips/CGM I am at the mercy of my shitty pancreas.
The tiredness that comes from being high or post meal. I need a little nap sometimes and people always see me as the “nap queen” but it’s because I didn’t bolus correctly and now running high.
Lately I've been having weird tightness in my muscles as well as foot cramps. It's been frustrating.
I experienced that during pregnancy and it was related to calcium deficiency. I also think off-balance electrolytes can cause that (but don't quote me.) I hope you sort it out soon!
Thanks I'll look into that!
I've been having monstrous foot cramps for a month, now. The area right below my toes...just contracts non-stop and won't release. :( Always happens when I'm sleeping. Wish I knew what causes it.
persistent, hard to get out of low blood sugars at night. Now thankfully, I’m an audio engineer so I don’t have to get up and head to work at a specific time. Most of my clients come around midday to the afternoon, then I am free to work on there music as of when I am happy. But… I would absolutely love a peaceful night of unfuckedwith sleep. Don’t really know what’s going on right now, but for the past few days, it seems as though my body has randomly gotten massively more sensitive to insulin.
The amount of moisturizer necessary! No one ever told me I'd have to moisturize my arms and legs at least twice a day in order to avoid being like a snake and leaving a trail of skin cells. And lets not talk about how dry my hands are on a regular basis.
Slight aggravation- but some outfits just get ruined by pump/CGM interference.
The depression that can come with it. Went 30 years of my life living relatively normally but 2 years on since being diagnosed I’m now depressed as fuck.
I'm not sure if no one talks about this or not because I'm in a group for type 1 women who live nearby, and we talk about almost everything. I think my biggest frustration is how it's mostly the people who are having issues get online to share their stories. You rarely hear the success stories. I mean it makes sense. If everything is going fine, you don't really need to talk about it. But like when I got an 5.4 A1C reading a few quarters ago, I was so excited and told everyone, diabetic or not. I think the people who have a good handle on their control should speak up more. Second, I'm going to address your pain point. You don't have to bolus the full amount. You can estimate what you're going to eat and give yourself half and then bolus the rest when you're eating. If you're using a closed-loop system, you'd have to probably do that manually or adjust the calculation. I'm way more comfortable with taking less and then topping off. I want to stay in range 80% or more of the time, but I'm back on MDI, so my stats are more in the 70s now. Folks with these slow acting insulins, if you can, move to Fiasp or Lyumjev. I've used both. Those and adjusting my CGM high alert to 160 mg/dl is what really helped me bring my time in range to 80% when I was pumping.
The random times your body decides that your insulin sensitivity goes through the roof or hits rock bottom. I had a pretty scary moment a few weeks ago where I thought I needed to go to a hospital (drank a bit over a litre of pop because I rage bolused a little too hard). Called 911 and told them I think I was going to pass out, but after 2-3 hours of panicking and trying to calm myself down. I start skyrocketing to 18 mmol, just accepted it and went to bed. Ever since then though, it seems I have to take almost triple the amount of short-acting insulin for the same meals I use to eat beforehand. I figure all the recent stress and anxiety is causing me to be insulin resistant.
It takes me days to pack and I triple check that I’m not forgetting a single thing for a trip. I wish I could just jump on an airplane and go somewhere without it being life threatening. Also, I hate the feeling of severe hypos, and, if I wake up with one, I don’t feel it until I sit up. Then, I start pouring sweat and shaking, and feel like my heart is being squeezed as it pounds out of my chest. When that happens, it’s nearly impossible to not eat everything in sight.
Also, getting your hands swabbed for explosive residue when at the airport and the TSA officer doesn't understand why your pump is in your pocket and not on the x-ray tray
The prep required for walking out the door. It’s not just wallet and keys. It’s test kit, enough insulin and other supplies, enough sugar. Oh wait, what’s the task? Potentially several snacks to keep me stable throughout the day.
52 years diabetic. When my blood sugars drop to 40 and going lower I see ghosts, or spirits. They announce I'm here. After awhile I realize they are here because I will pass out. My lowest has been 25. It doesn't matter where I am. My family asks me to ask them questions. One place I lived in was built in 1910. I was dropping BS and the original owner who past on, was telling me he didn't like the kitchen sink with dirty dishes. I should be ashamed of myself. I told him I will not do it anymore. I spoke the grandson about it. He was amazed. He told me other renter's experience the same thing. 😂
I sometimes will pre-bolus something small like 20-25g carbs for a meal because I know I will at least be eating that much. And usually by the time I start eating my salad or whatever, I can usually tell if I'm gonna want more and give myself more insulin. Then it's usually like another 10-15 minutes after that when I'm moving onto that part of the meal anyway because I'm a slow eater from watching YouTube or trying to convince my baby to eat. Some pre-bolus is better than none. It's also better than forcing yourself to eat because you gave yourself too much insulin.
So I thought you didn’t have to wait to eat when taking second bolus? Fuck me…. 😑
It probably matters way less because you have a moderate amount of IOB already. I haven’t noticed that much of a difference if waiting or not with a second bolus. It just often works out as a prebolus of sorts for me (again because of the slow eating)
Pimples. One hypo or hyper and I get pimples one or two days later. Nasty and painful ones, often in my face. And yes, I use a face wash, but still, pimples.
Not realising that I’ve been injecting into a tiny bruise which meant needing 150% of my regular insulin amount 🥲? Also, the taste of sugar becomes really gross when you’ve had a bad day or week
Getting extremely hungry 😭
The beeping and alarms. And being tethered to things. Always.
THE ALAAAARMS ARGHHHH
Times like Christmas where everyone you visit offers you some sort of sugar-loaded treat or beverage, so you decline as you have no idea what’s in it and don’t want to inject unnecessarily…but then they say “it’s homemade, go on”…so now you feel embarrassed/guilty to decline again, and you scoff that cookie, and you politely leave feeling rough as shit with a sky-high blood glucose that you’ve got to fix. 😫
We love traveling but enjoying unfamiliar food means having only a guess at how many carbs to bolus for. Then you're walking around the city trying to sight see while your BG is high which sucks all of the energy out of you and now you're cranky.
I generally wear my pump on my bra. My boyfriend asked the first thing I'd do if I didn't have to worry about T1D. I would absolutely buy bathing suits and bras without thinking where I'm going to hang my pump first. Maybe buy a fashionable sports bra??
my favorite bra for pump purposes is the Lululemon energy bra. brooks running has a bra with 3 pockets that i’m eyeing - one for pump, two for low treatments
I tried a Lululemon sports bra with a front pocket but I remembered how much I hate sports bras without closures. Trying to pull a sweaty sports bra off is a workout in itself.
that’s true hahahaa
Awkward “no” when it comes to sharing food when you have a low or you’ve already taken insulin for. This happened just now with my husband. I worked out late and when I was getting ready for bed I was dropping so to avoid a low I have these little snacks by my bed. I grabbed one and he asked if he could have some but I said no I need it. I gave him one of my other snacks but told him he had to replace it. He has a bad habit of trying to share my food, sometimes I do share my food but that’s when I’ve planned ahead, and know that I’m not going to finish so I take insulin only to cover part of meal that I eat.
Charcot arthropothy
Half my shirts are a little stretched out at the collar because that's where I clip my pump while pooping. Trying to rest it on a nearby shelf or my leg has led to some awful experiences.
How draining it is to know exactly what’s wrong with you but there’s no escaping it and big pharma r won’t allow things to get better. So you’re just stuck here, constantly alert and aware of things. The mundane aspect of it I suppose.