FUDiabetes

What Are Some of The Things That Frustrate You Most About Being (or caring for) D


#21

That was REALLY funny! It’s perfect!


#22

I stole a page link. No idea how many of these are valid in these forums.


#23

this i can fully understand and respect. i think that perhaps b/c i did not get my D until collage years, i did not learn how (especially on an emotional level) to think of my D as just something else, for example, i wish i were 5’9" tall, but i am only 5’4". and thats just the way it is. accept it and move on. i would rather not be 5’4" but i would not like to go to a camp where everybody there were the same height and that was all we talked about. :wink:


#24

this sounds wonderful. i’m 53, but can i go there too? :wink:


#25

Yeah - Completely agree.
At diagnosis when 8 years old there is only a vague memory of what was before and that memory is enough to know that “now” is much much better than “before”. DKA diagnosis is not pleasant but (always looking on the bright side for that half full glass) it leaves no room for misunderstanding that maybe all this is a mistake and not required.


#26

this is very cool, but how did it end up on this thread? :wink:


#27

thx for your understanding. it really means a lot to me. no kidding.


#28

What a great word to describe those highs!


#29

The unpredictability, for sure - recently nailed dosing for a burger and fries, and the next time I tried the same exact place, split bolus, amount of food, time of day, etc, I went low. :roll_eyes:

Also, being semi-newly diagnosed, discovering how much it impacts everyday things that I wasn’t anticipating - while vacationing this past weekend, I went swimming (for fun…not even that strenuous), thinking nothing of it, first time I’ve been swimming while on insulin, when suddenly I started getting all my low symptoms: nausea, headache, fatigued, shaky, etc. Ugh! It ended what had been a very fun evening with my siblings. Actually thought of you, @daisymae, and your swimming thread when I realized what was happening.


#30

That’s pretty awesome though! Doesn’t it feel great when you nail it? :sunny:


#31

Pretty crazy how some activities your body isn’t adjusted to can absolutely crater your bg. The learning curve is steep. Thankfully it gets easier.


#32

Also have to say that our son’s BG is way more predictable since he’s been out of honeymoon. Being in honeymoon is good for some, but for others it really is pretty erratic.


#33

Yes, especially something like that! Feels a bit like the insulin fairies sprinkled some magic over those fries or something. :wink:

Absolutely. I’ve told my family several times already - it’s not that I’m looking forward to my honeymoon ending as far as disease progression, but I am very much looking forward to my honeymoon ending so I can maybe find things a bit more predictable (same goes with breastfeeding…).


#34

Wow! @docslotnick I really appreciate this. Often, when I’m reading everyone’s accounts here, I am struck by how lucky we are to be in touch with each other and how without EH having diabetes I wouldn’t probably have come across you folks. All of the experimental willingness (necessity?), the record-keeping, and the sticking-with-it inspires me.

While I wouldn’t wish diabetes on anyone, I feel like it’s a unique bond that you all share. And when looked at logically, as you’ve done here (and apparently for the last 46 years), it certainly feels more unlimited than it could otherwise.

But there are days…where it doesn’t work right, BG is out of control, where all the experiments feel like a waste of time. When people don’t understand that a giant slice of cake will make someone I love feel like ■■■■. And when I know know know there’s a better way to do whatever it is (figure out ratios/run without disaster/eat/carb count/inject basal/track meals/apply the CGM/sleep thru the night/etc.) but I can’t figure it out. That’s the hardest. Not being able to figure it out and knowing there’s a consequence. :disappointed_relieved:


#35

Or you think you have it figured out, and you do the exact same thing the next day, and have the opposite result. I used to beat myself up constantly: “you should know better by now, you should know what to do after all these years.” Now I accept the frustrating, aggravating, infuriating UNPREDICTABILITY of my diabetes, and just get on with the day.


#36

I feel same as beacher, maybe it just takes 30 years or more of D to get there.

Yesterday was one of those days I just had to move on. I had both one of the highest and lowest numbers in one day, than I’ve had in a long time. Not going to waste energy on why, today is a new day.


#37

Yep, the unpredictability and constant adjusting. It gets so tiring. I try not to get frustrated anymore, but it still gets tiring. Especially because during those times my blood sugar is also high or low, which makes me not feel great physically on top of feeling tired about diabetes. I’ve had a period like that over the last two days. Highs and lows, no time spent in range. Adjusting settings to little avail. I think I’ve worked through it, but now my thing is waiting for the point at which this will happen again (which’ll probably be in a week). Exhausting.


#38

This is one of the things I worry about for my son.

When I am dealing with crazy BG management, I may be exhausted or frustrated, but I have some respite – my husband can take over care or my son is in daycare. I can let the control slip a little if I have to, and I personally am not physically feeling the consequences of that.

I can’t imagine what it’s like to be the only one who can handle things, 24-7, no matter how crummy you’re feeling, how many nights you’ve been up treating lows and highs, and how many other things you have to juggle in life.


#39

That’s EXACTLY why forums like this are so helpful. Even the most understanding, supportive friends and family can come close, but not truly understand.

And when they sort of get it, things can change and they have to learn all over again.


#40

this is exactly what happens with my family and my husband. it drives me nuts. i’ve had D for 30 + yrs, and they still dont get it.