Just wanting to be heard, as it’s hard, as well all know, to have nobody around who gets what the day to day grind is like. I feel like I’m working two jobs, and not doing either one well enough – trying to keep my blood sugar in a healthy range, and trying to do my day job that pays the bills…And working with coworkers who have no idea that just showing up to work to just get work done would be an incredible luxury…
Just gets me down some days.
I am not really asking for advice, I guess. Just happy to be virtually surrounded by others who get it.
How do others deal with feeling…not-understood? I mean, not really. Knowing what it’s like to know what your BG is 24x7x365. What it’s like to think about every single thing that you ingest, or when you can exercise, or how much sleep you got 'cause your BG is all wrecked the next day or…all the other myriad variables in the equation…
Hey Jason,
All we can do is look forward to a new and better day tomorrow! I pray that your anxiety and frustration will lessen soon for you. I and all others on this forum certainly understand your feelings.
Keep up the battle friend!
Hey @jlecount welcome to Type One Nation. Well… first of all i think it helps knowing that every single person here knows what it’s like. I don’t have to explain to anyone what suddenly dropping JUST after brushing your teeth is like. or what waking up to a 39 mg/dl is like, at 3:15 AM. So that helps. I think for me the first 20 years were tougher than the 2nd 20 years, only because I had that hope… you know the one… the “the cure will be here in 5 years” hope. Not that I am a defeatist now, I just gave up wishing, dreaming, hope-to-believing, not looking at what I am doing but reeeeealy wishing my life was different. I guess it still sucks, but it’s not like I have to be fully conscious about it anymore, and so it’s more of a back-of-the-brain function than a pen and paper right in front of me function.
don’t know if it helps or if it even makes sense. anyway I’m glad you’ve joined us at the party no one wants to be at!
I agree with @SteveK … and Steve BTW, welcome! bad days happen. then there’s the next one. One thing that help me but sounds a little different Steve, is this idea of some noble battle I am always fighting. I have suffered anxiety and depression and it took a long time to try to think differently. If this battle/fight thing works then run with it… for me, it eventually got too exhausting. Not that I gave up in any way, that wouldn’t work with my personality. What does work is I found a way to make peace with diabetes, it was the only way I could close this never ending feeling of being at war with myself. So a peace treaty concept is my current strategy.
don’t underestimate the value of a good toy. sometimes a contraption update is “just the thing”. my next pump will be a feedback pump like the TSlim… for now I am using G6 independently with an ancient 530 medtronic. something new sometimes shifts things in my head. I treated myself to a “smartwatch” and so now taking a blood sugar I look at this dial widget right on my wrist. A far cry from testing urine in a test tube! I figure if I get to giggle a little, I’m doing it right.
Hi Jason, Being T1D for 48 years, I guess I’ve accepted that other people will never, ever ‘get it’. That most people are healthy and will never have to count/ration carbs, plus the rest of the daily grind we live trying to live with the disease and not have it destroy our health.
When I get down, I usually check these forums and that helps a lot-knowing others are living with the same challenges and managing, even thriving .
I do try to remember all the positives in my life- good friends, a loving & supportive husband, a great boss (they do exist). You may try that too, focusing on the positives.
I hope this is helpful, and please stay connected here- everyone is rooting for you .
-Joanne
It is depressing and no normie will ever really understand. I have a brother than is also T1 so we can talk. Talking to another one of us, especially in person, really helps me.
Just chiming in to say I hear you and I feel this all so much. I’ve been in a habit of perfection for the last year. I’ve been able to get my A1C down to 5.9, but after getting that I realized I’m not that happy not like I was when I wasn’t so focused on my management. I am constantly worrying about highs and lows and I used to have a much more laid back approach to it all(still took insulin and did the work, I just didn’t freak out at a 200 and now I do which is what I’m working on). I’m working on finding a happy medium again but it can be soooo hard to get there when no one else around me really gets it. Even my dad who is a great guy and obviously has been around me a ton since I was diagnosed it doesn’t understand why sometimes I turn down pizza if I’m at 170 and has made comments that make it feel like I’m really on my own. I had a full on just like meltdown where I actually had to say I don’t need you to understand because you’re never going to but I need to complain about this and you can help me by just letting my vent and cry. I’ve always been someone who has been like diabetes eh I have to accept it so I’m not going to complain. I don’t know what happened but this past year I’ve had a lot more anger and resentment that this is my life. I’m so happy that overall my life is fairly normal and that I don’t really miss out on a lot, but I’m also so bitter that I have to think about eating pizza or cake. And that I can’t just go for a 5 mile run when I want to. And heck even stupid things like a crazy day at work or a job interview, or a first date can send my sugars straight up. What’s helping me is I did start journaling again, I’m exercising more, and for the first time when I start feeling anger and resentment I let myself have my moment. I tell myself it does suck, that I really didn’t deserve this, but I can and will get up and move on. Then as self absorbed as it sounds I spend 5 minutes telling myself how amazing I am and that I’m literally doing my best and then I move on. Most of the time, I’m completely fine and then some days I just allow myself to deal but then I get myself up and I move on tomorrow. That’s what we’re all good at right? Taking a negative thing and seeing the good in it.
Thanks @Tee25 – I can totally relate to what you’re saying. I also have trouble finding the sweet spot between driving-myself-insane-with-hyper vigilance to feeling guilty by not doing my absolute best every day. I’m fortunate to have a wife who is super supportive. Maybe your dad’s heart is in the right place, but doesn’t understand the threat of consequences we internalize?
I also wrestle with anger and resentment, but…then realize that it’s not just us who have challenges we have to deal with. As the expression goes: “Be kind, for everyone you meet is fighting a hard battle.” Right now, for example, I’m in awe of parents dealing with COVID safety for their kids. I don’t have kids. I don’t have kids with T1D, just myself…So many hard things in life…We have more than some…but less than others too.
I like your approach, using self-talk. That’s great. And journaling - I think I"ll give that a shot.
I meditate daily. I find that helps me by toning down the negative self-talk. Most days Some days are just rougher than others…But since my meltdown last week (which you all helped me cope with, thank you!) I doubled-down on my meditation practice and got some exercise. It helped a lot and actually had the silver lining of getting me meditating more again…So…there’s that.
Anyway, stay strong and thanks or the great suggestions!
Hey Jason. I hear ya loud and clear. I have those types of days all of the time. I had one today. It’s a relentless and merciless disease that few people understand. That and you’re forced in many respects to eat weird shit. I just ate shirataki noodles in replace of pasta…while not bad cause I added some hot italian sausage to them, I’m not even sure what the hell shirataki noodles are. But there is a beauty to all the nonsense…there really is. Keep exploring your paths to happiness. Keep voicing your frustrations. Keep engaging with friends. If I ever see you, I have a hug, a beer and some back up sugar tabs for you.
@jlecount Unfortunately, there is a level of frustration that you just have to accept and deal with. It’s not a panacea but using a closed-loop pump/cgm certainly helps. There are three currently on the market, TSlim/Dexcom/Control IQ, the Medtronic 780g/g4 and, the Omnipod 5/Dexcom. The Medtronic 780g is still awaiting FDA approval but I have had it for over a year and it works great. 90% of the time all I have to worry about carb counting and the rest is managed by the algorithm. The other 10% are times when “normal logic” just doesn’t work - intense physical exercise, illness, cortisone shots, sudden changes in insulin sensitivity, etc.
I also find it helpful to keep most things related to my diabetes out of the kitchen and living room and confined to a limited space in a separate room. This helps to focus on other activities without having the constant reminder of T1.
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Some days are just rougher than others…But since my meltdown last week (which you all helped me cope with, thank you!) I doubled-down on my meditation practice and got some exercise. It helped a lot and actually had the silver lining of getting me meditating more again…So…there’s that.