Really struggling with the relentlessness of T1

@Spooky I’m not sure if they have the services you’re looking for (and I’m not a customer of theirs), but perhaps something like IDS (https://integrateddiabetes.com) might have what you’re looking for. Or perhaps TCOYD might have a reference counseling service. I believe IDS and others (not proselytizing/advertising any org in particular) do televisits both phone and online if you can’t find a local source.

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I think nearly every T1 goes through that moment of crises where it all seems impossible. I had a teacher 40 some years ago who gave us an assignment to face our fears about death or something like that. She specifically assigned ne to look into the downside of diabetes. Apparently, I refused to do it until I was made to (boy, was my mom mad at the teacher). My mom reports that I was depressed about my life for weeks after that. (I honestly don’t remember it.) Perhaps in desperation, she sent me off to a summer camp, the leader of which was also T1. (Although it was not a diabetes camp.) He had me inject my insulin with him every morning and we talked about our experiences. That I do remember. Apparently it was what got me out of that funk.

Since then I have not let it interfere with anything I wanted to do. When I was younger I went high adventure camping, took week long canoe trips, 40 mile hikes, 120 mile bike trips and so on. Today I still cycle (although much less than 120 miles), SCUBA dive (sans pump, natch), hike, travel internationally… really, whatever I want to do. If you look around, so do a lot of other people. One thing that helped me was that I used to read about other T1s in Diabetes Forecast magazine - actors, professional athletes, mountain climbers, you name it. They can do it, so can you.

And you just deal with problems. I once had a pump failure in the middle of the night while in Bonaire on a SCUBA trip. I called the pump’s international help line and the tech support people helped me work it out. (Thank you midnight Medtronic international support person. I also learned from that and started carrying my old pump with me when travelling overseas.) Point is, you really can do anything you want if you take sensible precautions.

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Thinking of you during this time. You’re dealing with a lot of very stressful events. Stress messes terribly with my glucose control.
I’m new to T1d - a little over a year - but I do feel “gadget failure “ stress when on vacation or away from home, so I carry insulin pens and my glucose meter supplies as backup when I’m gone. That helps lessen the anxiety for me.

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Hi there @Spooky
I dropped into this thread to wish you well and share a resource and an analogy with you. This was posted on the Stacey Simms Diabetes-Connections podcast: the topic is – “There was nothing. There was just a gap” Navigating Menopause and T1D. You can find the show on her web page or any podcast player.

The analogy is from my own past, when I struggled with a vast number of food and environmental allergies, and felt miserable all the time (incl anxiety). My allergist told me to think of it like a bucket: you might go years with some irritation that is manageable, filling your “bucket” to some degree. At some point, too much gets added and your “bucket” overflows. That’s when the system breaks down and becomes very difficult to manage. Do what you can to reduce the level of your bucket, and you’ll be able to manage the [allergens] better.

My thought for you is that the T1D + caregiving + grief + menopause + PTSD + panic disorder → it is more than understandable that your bucket overflows.

Please think about reaching out for more support on the changes coming with menopause as a way to reduce your stress burden. It sounds like the overlap with T1D can be challenging.

Please also know that I am saying this from a different age & stage – I am 40 yr old, a caregiver to a tiny T1D pre-K kiddo. I mean this to be a warm hug, but if what I say is not helpful, please rely on the other great folks here. :slight_smile:

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I’ve actually been saying this to myself that I managed this for a little more than 20 years without any technology really and I did a pretty good job when I was diagnosed in 1987 my father bought me a glucometer and I was the only person at the Joslin Clinic who had their own meter. Everyone else was still using strips. I was very lucky.

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Thank you. I’ll check those resources. I managed to get on a waitlist (2-3months) at a clinic but am still looking for other ways to manage this until professional help is available.

Thank you for this wonderful reply. I am going to try to think of this the way you describe. Maybe I need to start making a gratitude list of some sorr as a way to drain the bucket a little. The bucket analogy seems fitting. It’s similar to how I tell people what having diabetes is like. It’s all about balance. Eat this then take that insulin. Gauging everything at all moments. If I’m going to walk up and down three flights of stairs with a 90bg I have to consider covering that walk with 1-2 smarties or putting the pump into exercise mode.

I also failed to mention my only child is heading to a 5 week on campus college program to help them transition to college this year. We’ve never been apart really. Maybe one slumber party in 18 years. So that’s another big stressor.
I had a kindergarten student when I was a teacher who was T1. Tiny little sweet girl. She had a nurse who accompanied her all day everyday at school. Thank you again for the reply

I am able to get my pump replaced the last week of September and keep the old one. I am hoping this will relieve a good deal if the stress I feel about gadget failure. I have two old Medtronic pumps as backup now but can barely remember how to use them. Two years ago my tandem tslim froze and I had to revert to those and I managed. I have to keep this in mind.

That’s such an upsetting thing your teacher did. It brought back memories for me of a teacher who was unsupportive when I was sick and didn’t yet know I had T1. The irony was she had it also. She refused to allow me to go to the bathroom or get water while in her class, accusing me of just trying to get out of work. Even after, at 17, peeing my pants in her class, she still said I was being dramatic.

I had a pump failure with my old Medtronic and they sent it same day air and hired a messenger to pick it up at the airport at 1am and drive it to my house. It was incredible. My tandem failed and it took them 6 days to replace it. It was horrendous. I think it’s one of the reasons I am so panicked now.

How fortunate you had that camp counselor when you needed someone to relate to.
Thank you for your reply :hibiscus::cherry_blossom:

Just want to say you are all a very kind group of people. Thank you for helping me :hibiscus::cherry_blossom::hibiscus::hibiscus::cherry_blossom::cherry_blossom:

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Come to think of it, I had to have my Tandem replaced very soon after getting it and I believe it took them 3 days to get it to me. Medtronic overnighted the last replacement pump for me a few years back.

Did you save your old pump? That’s what I did when the Tandem failed. As I mentioned elsewhere, once on it, I stayed with my Medtronic for several weeks to build up a supply of extra infusion sets for the Tandem. (Insurance companies are absurdly stingy with pump supplies these days.)

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I have two old Medtronic’s from probably 10 years ago. I reverted to those when the tandem failed. It was jarring that it took them so long to get one to me. I suggested to the company that they have their reps have an emergency supply of pumps to get them to customers sooner. But now that I think about all of this I am going to ask my doctor about prescribing or getting me a weeks worth of Medtronic supplies and brushing up on how those pumps work.
It’s so obvious insurance companies have no idea what it’s like to have such a small margin of supplies on hand between orders.

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As @MarkCK suggested, hold onto your old pump and some supplies! “Out of warranty” does not mean “out of operation” and it will ride you over while you wait for a replacement.
You mentioned your child will be going away to a college transition program. Does s/he have Type1?

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See, you’re pretty resourceful already! That’s the key to defeating pump anxiety for me - backup plans. And there’s always injections. I had a pump fail during a holiday awhile back and I had to go back to Lantus and Humalog injections for two days. And you know what? It wasn’t that bad. Really, it wasn’t. It wasn’t pump control, but I didn’t spiral out of control.

Point being, there’s always a way out and when pressed, you can find it. Like you did before.

@Spooky

Hi Spooky - I haven’t had much luck with therapists, but after a scary DKA hospital experience I started getting severe anxiety and panic attacks that just would not let up. Last fall, I started using the Unwinding Anxiety App by Dr Jud Brewer and it has truly been a game changer for me.

You can get the first few sessions for free. Personally, I found it worked better when I was also reading the book as well, but it’s not necessary to get the book. I try to use the app consistently every day (sometimes multiple times a day). Don’t expect a quick fix -but repeating the exercise every day in small bits at a time have really helped. I recently got through a panic attack on the freeway and was like “holy crap it works!”. Not cheap but worth it. Take care and sending good thoughts to you.

Google Play
Unwinding Anxiety® - Apps on Google Play
Apple App Store
Unwinding Anxiety on the App Store (apple.com)
Unwinding Anxiety Book on Amazon

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Me again :blush::crazy_face::tired_face::confounded: (take your choice :blush:).
I was searching for something this morning and found something you might like to check out. Since I’m not familiar with the website I didn’t want to share the link, but here’s a screenshot of where to go to check out a podcast on living with chronic illness. I have not listened to it myself but I hope you find it helpful.

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The app looks interesting. I have another one similar that has an ear pulse rate monitor and you breathe and try to get your pulse in a range. I forgot I even had that until your post. Thank you for the suggestion!

Sent you a dm as well. Unfortunately yahoo mail seems to be set on pushing jdrf emails to my junk folder no matter how many times I tell it not to.

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I agree so much about the groups that post all their straight lines! I have had t1d 37 yrs, and son was diagnosed 3.5 yrs ago…and caring for elderly MIL who lives with us. After my son’s dx, I really struggled. Alerts for both of us were about to ruin me! And the lack of sleep…well, it was rough.
A few things that have helped me…setting alerts higher. I know long term highs are damaging, but so are mental health stresses…so I took a step back. I have to keep my son safe…but not perfect. That helped too…there just isnt perfection with T1D.
The other thing I had to do was step back from my MIL’s care. My husband got much more involved and we hired more help.
Delegate what you can on other things…and that’s hard for me because then i worry that it wont get done right! But…in time, i learned to let that go too.
Keep reaching out to those who understand. I do find that sooo helpful as well. The daily grind is real, and hard to explain when you dont live it.

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Hey Spooky, and every other T1 who becomes so fixated on glucose levels rather than keeping an eye on the big picture. Talking from experience here - 55 years as a T1. There was a time when I first statred using a CGM, and it made my life miserable, always checking glucose levels - too high, too low, what’s my trend, do I need to eat, should I inject some more insulin, and on and on. Made me crazy! I still use a CGM - a Dexcom G7, but after years of first peeing on a teststrip, then going to finger sticks, and finally to CGMs, I’ve learned a few things that all of us who are T1 should remember. And these thoughts come after much discussion with terrific endocrinologists, a wonderful CDE, and years of experience working in the medical field. The goal is not to maintain a perfect glucose level at all times. That’s impossible. Your glucose level will rise after you eat, even after injecting your quick acting insulin, or receiving a bolus from your pump. And your glucose may drop now and then. This happens, as we all know, for a variety of reasons - going too long without eating, exercise, infections, stress, etc. It happens. We just eat something and the glucose level rises. As one endo told me, don’t sweat the small stuff. Shoot for the best average you can. Control your diabetes; don’t let it control you. My glucose does go up, and comes back down. It drops, but then it comes back up. I just try to maintain a good average glucose level, taking into account the highs and lows. Something’s working. My A1Cs are usually in the mid 6’s. I’ve read a lot of suggestions here - support groups, therapists, and so on. These are great if you can find the right ones to help you. But don’t forget to turn to your best resources - your endocrinologist, or whomever is following you, and a good Certified Diabetes Educator. Talk to them. They should be able to provide insight into what you’re feeling, and help you overcome the anxiety and fear that many T1s experience. And they are your best resource for finding support groups and professionals who can help you.

I really do hope you make those calls, and let your healthcare provider know what you’re feeling. And to repeat what the endo told me… “don’t sweat the small stuff.” Keep your eye on the big picture. Diabetes is just one part of my life. It IS NOT my life. And I treat it as such.

Good luck.

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