My name is Jesse. I’m 30, been diagnosed Type 1 for 8 years this December. Just want to introduce myself and vent a little. I have never tapped into a diabetic community before and am feeling pretty isolated these days. I don’t really feel depressed, just burned out. Tired of the grind, yet having to stick with it.
My family is supportive, and at the same time one of my biggest stressors. If everything is going well they let me be, but if my CGM beeps they are on me like hawks! I understand their concern because I have gone too low and passed out 3 times throughout the years and have put them all on edge. But I feel like they just see me as a ticking time bomb. They seem to have forgot that I am still a person. They may not think that way, but that is how it comes across. It’s driving me nuts. Besides that I am self-employed and money gets tight sometimes adding to my stress. Among a million other things that turn my BG into a maniacal roller coaster.
I am the most positive person generally. I just feel exhausted. I have taken the quote from Lord of the Rings, as my motto.
‘I wish it need not have happened in my time," said Frodo.
“So do I,” said Gandalf, "and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.’
That is how I face each day currently. Is that best? I would appreciate any input.
Works for me, too! My daughter lives with me and reacts exactly like that to any beeping of my pump. But that is simply out of concern for me. I have explained that the pump beeps for a high alert as well as for a low one, and the range I have selected is small enough to allow me room for corrections in both cases. But she still gets upset. Then I remind her (and myself) that of all the chronic conditions and diseases, Type 1 diabetes is probably the easiest to live with.
It works for me too! Only been T1D* 12 years but it feels like a lifetime. I know the frustration, the feeling of isolation and just feeling damn tired of it all at times. Live for yourself and live that life well (as well as any of us can)! I know you understand your families concerns but perhaps they need to be reminded and to understand things from your perspective. I think current technologies open up a full life of possibilities for T1D’s. Use that if you can. As they say, “life is short” but you have most of yours ahead of you! I envy you in that…
Actually my wife is the T1D that happened at age 55 through an acute case of keto-acidosis. It also kicked off a series of mixed or multiple dementia’s. I have been caring for her (we do the same diet, portion control, etc. - except I’m not on insulin and only rarely take my BG) so it’s almost as if we are both going through the experience. Because of the dementia’s she is unable to care for herself so I must manage BG, administration of insulin, meal carbs, etc. I understand the feeling of isolation even though family and friends are around. Do things for you whenever you can. Go out with friends, take yourself out, enjoy walks, hikes or whatever it is you are into. Selfcare my friend, don’t ignore being good to yourself. If you haven’t already, try and talk to your family about your concerns, maybe you can help them understand. My wife and I were both self employed and I think I get that too. It can be very difficult and stressful at times. I happen to believe that T1D’s are both patient and caregiver all rolled up into one. That is a monumental thing to have thrust upon oneself!
Hope my 2 cents (and that is all it is worth!) helps a little. I know talking to you about it has helped me a bit - thanks!
I’ve been type 1 for over 50 years. My pump used to beep all the time until I got the 780g mini med with CGM. I go for long stretches in silence now. I highly recommend. And as for timing….this technology sure beats the old days !
I think a lot of health issues are harder on the family than they aere on the patient. They want to help and are concerned, but they may not realize you mostly have things under control. Your frustration with them is probably justified. One suggestion – when things have been quiet, you might bring up the same issues with them that you did in your first post. Just getting it out in the open may help a little.
I have been a T1D for 60 years. I remain active (can run my dog around the show ring basically as well as people decades younger than I). I got a Dexcomm CGM several years ago and that was a game-changer. I try to manage my BG levels, and while I still get beeps for both low and high, I no longer get really dangerous lows. Any beeps are the result of my own stupidity. I will say that when I was younger, I ate more carbs and therefore took in more fast-acting. I now consume a lot less carbs per day and that is probably healthier.
I have two suggestions – you now know it is not all that hard to manage your T1D. The only thing in your way is that you are human and will make mistakes. Do your best to avoid dangerous mistakes. The rest of the time, take all this as part of life. I like your Gandalf quote. What you have does not have to limit what you do. OK, you should probably turn down high-carb stuff you might otherwise want. Small price to pay. Bottom line – managing T1D eventually just becomes part of your everyday life. And it does not have to keep you from doing pretty much anything you set your mind to.
Second, let your family know you appreciate their concerns, but too much help can create stress for you. Tell them you know they do this because they care, but maybe they can dial back a bit.
