Im wanting to know what everyones top 3 frustrations that T1D causes,
mine are; 1. Meal planning/carb counting 2. dealing with unexpected spikes 3. Waiting forever for my insulin to kick in.
I would love to hear yours!!
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@spt2 Welcome Steve to the JDRF TypeOneNation Community Forum! Good to see you here and thanks for sharing your thought - ?frustration.
After living with diabetes during the last seven decades diabetes no longer frustrates me, I just take everything that comes along and swing with it. Agreed, life with diabetes is loaded with surprises - I’m still learning, and I just take these surprises as “learning experiences”.
Ofthe three things you mentioned, #2 has provided me the most “fun” and I’ll adapt yours to mine and say “higher than expected” or “lower than expected”. Like yesterday when the final whistle blew for the Super Bowl" I looked at my pump screen and saw 187 mg/dl - I had expected I’d be 110 - my usual for that time of day. Now comes “detective time”; I had gone back for another scoop of delicious potato salad with plenty of dressing and didn’t remember to add to my carb-count - so at that time I took the necessary insulin and went to bed.
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@spt2 haha agreed! Especially the waiting for carbs/insulin to kick in. Diabetes takes so much time that I could use for better things… like scrolling on this forum!
My top 3 are…
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diabetes “stuff” happening at precisely the wrong moment. For example going low when the dentist is cleaning your teeth or ripping a pump site out when you’re already running late for something.
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high/low BG symptoms that also affect the people around me, like when I get super angry/emotional/sarcastic at simple questions from my parents/siblings just because I’m high. By the time I realize I should just keep my mouth shut something uncalled for has already slipped out.
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you do everything right and diabetes decides it doesn’t care- it’s more fun to go high!
A close fourth would be Alarms. About. Every. Little. Thing. Grrrrrrrr insulin pump I’m looking at you.
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@6yGodsGr
LOL, Yeah, your right on the alarms! Without a good mindset alarms trigger stress/anger/frustration. I have to tell myself it just means there’s something I have to do, not something I have to feel!! Its a battle for sure!
Thanks for your response!!
I’ve had T1 long enough to not be shocked, surprised, or frustrated by the condition. So. Top 3?
Paying for insurance
Using insurance
Doctors.
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Dennis,
Had similar experience. Was a solid 136 at the whistle but forgot about the fats(was trying to snack in a keto/high fat manner to avoid spikes and thought “I’ll just have a few chips here and there”). Thought I had successfully navigated the land mines but slowly drifted(without rise rate alarm) up to 185. Like you corrected and all was good.
thx
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Glad to hear I’m not the only one who had crazy bgs following Super Bowl snacking. They must make these events specially for us t1ds and other people with complicated relationships with food.
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Like @joe not much surprises me. I jump into “rraxtive” mode when necessary. I’m speaking biologically here. On the business side of things, I get frustrated when insurances require preauthorizations for products authorized already. How’s about just found it once a year? Or when they change their formulary to one that is not approved for pumps, and your doctor has to explain why you must keep the period one.
But most concerning at this point for me is the difficulty getting life insurance. I can’t tell you how much I wish I had included me employer provided life insurance plans as COBRA plans when my jobs were outsourced!
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My concerns can be summarized by erratic blood sugars that make no sense; health is good, eating the same food, no stress until elevated blood sugars, than why am I suddenly 350? and I find the Tandem TSlim cartridges a real pain to load.
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Hmmmm…just three things that frustrate me? Perhaps, I’m easily frustrated. Lol. I’d have to say,
- Getting very different results, even though I consistently count carbs, take proper bolus, etc.
- CGM inaccuracies, especially if I down some juice, before a finger stick and then discover BG was NOT low after all. Ugh….hate it when that happens.
- Getting awakened by my CGM when it’s not an urgent alert for low or high BG.
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Yes!, I completely relate to those especially #2.
Also, I have started changing my Dexcom in the mornings cuz if I do it at night I likely won’t sleep due to the inaccuracies in the first 12 + hours!
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When I am high for literal days and no matter how much I drink or how much insulin I give, I don’t come down.
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When people confusing Type 1 for Type 2. As a very healthy (aside from being a diabetic) teenager, people looking at me and assuming I used to be really fat.
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When I have to stop physical activity (especially sports practices/games) due to lows
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- the fact that there are no breaks, holidays, or vacations. what i’d give for a month without t1d…
- the cost: financially, physically, emotionally, and mentally.
- when i rip my pump site out getting the cord stuck on something.
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I found that wrapping the tubing through my underwear a few times before tucking my pump in my pocket, helped prevent snagging (I use past tense because I use Omnipod now).
I found a tape called Simpatch: it’s a cloth tape that I find very durable when keeping my Dexcom and Omnipod in place. They make one with a 0.8" round hole for infusion sets - I have not used that one myself but Amazon reviewers report using them with various Tandem and Minimed sets.
So long as you press securely so it lies perfectly flat so you’ll get 3 days of wear (10 for Dexcom!).
I use that simpatch for my pump sites. I usually cut a little around the hole so that it fits over my set a little easier, otherwise I have to stretch the patch to make it fit and it’s a little uncomfortable.
I also cut the patch into pieces and use the pieces to tape my tubing to my abdomen in various spots to keep the twirly tubing from looking funny under light weight clothes and from catching on stuff.
Back on topic!