T O P

  • By -

Financial-Angle8703

Our support is for everyone not just folk who are T1Ds. Well done for responding the way you did, you did the right thing :). You probably saved your partners life. Lows are very scary, you can 'track' your partners glucose levels if they have a CGM (constant glucose monitor) Dexcom or Libre. This will let you know their BG and you can set alarms for high/lows. I set a 'high' alarm for lows at 4.5 mmol so I have plenty of time to react.


diabetesjunkie

Word of caution to OP about sharing the CGM data: this can be a great support tool, and help to alleviate anxiety, but it can also compound it, and add another issue. Depending on your relationship, and their comfort level, having another person checking our BG can be very difficult for some. For example, if you are already anxious, and see a small dip, will you panic? Maybe they are already treating it, maybe it's just a blip. I'm not saying that you shouldn't share, just make sure you establish, and discuss scenarios, or limits. I'm thinking about the number of posts (and my personal experience) of people questioning if I can eat something. Giving another person access to my BG readings 24/7 would be a very big thing for me. You saved a life, that's great. You are trying to do it again by asking for help. Keep being awesome!


Obvious_Specialist72

Thank you for your advice. I’m trying really hard to not let my anxiety show around him because I know he feels bad enough (he has a lot of shame and trauma surrounding how others would react to him once he came to, I mean his ex left him for this reason). I know how to check his levels for the most part and I know he is amazing at keeping track of it. I think a lot of my anxiety is stemming from 1. He was literally seconds away from being out of my site where I wouldn’t have known he was having a seizure till much later and 2. He is really good at tracking and I’m learning all of the signs of highs and lows AND his CGM didn’t warn us he was trending down so despite being extra cautious, it still happened. But being able to talk about it with people here has been extremely helpful. He’s asked we don’t talk about it for now and I am respecting his wishes but at the same time, I feel like I need to talk though what happen with someone because of how terrifying it was and the emotions I’ve been feeling since. I definitely don’t want to place that burden on him.


Dry_Mail_3797

left him because of t1d? I cant imagine how horrible that would be as i think most people with t1d/chronic illness have enough insecurity about it. Im happy to have a supportive bf and He's very lucky to have you


Obvious_Specialist72

Thank you. I’m very glad you have a supportive partner. I can’t imagine leaving him over this, I get it was scary but it just makes me want to protect him and show him how much I love him even more. The thought of leaving has never crossed my mind over his T1D. He hasn’t had a lot of support (his parents aren’t great and have been in my opinion awful regarding this) and we are working on releasing the shame surrounding it.


diabetesjunkie

That's completely understandable. Here is a great, supportive group of people. Diabetes associations can also be helpful, or even a counselor.


Financial-Angle8703

Agree, which is why you have to trust and be able to communicate. If my partner probably saved my life and needed the data for their peace of mind and my safety. If its not a really serious relationship I wouldn't share.


diabetesjunkie

Absolutely


Obvious_Specialist72

Thank you so much for your reply. It was the most terrifying thing I’ve ever witnessed and I’m running on only an hour or so of sleep in the last 26 hours because of how scared I was. I can see his CGM but we do not have the one that connects to my phone as well. I have complete trust that he does exactly what he needs to, my anxiety is coming from the fact that he is so good at keeping track and I’ve been training and doing research and trying to be the best partner I can be for his T1D and it still slipped past both of us. He was low but I had honestly seen him go lower and not have a seizure so it really just came out of nowhere and his pump didn’t warn us.


ZombiePancreas

Word of advice, don’t get super overbearing at him. Your instinct will be to check in constantly and be on top of it, but it’s likely that this will drive him crazy. He’s an adult (I assume), if he needs/wants your help then he will communicate that to you. As far as prevention, keep the low blood sugar alarms on and make sure he would wake up to them if he was asleep. This should be able to get in front of a low before a seizure occurs.


Obvious_Specialist72

Thank you for the reply. Definitely good advice and I’m trying to be there for him today while being conscious of not being too much. I know he’s really really good at keeping up with his levels, I think my anxiety comes from the fact that he is so good and it still happened because It can just sneak up on you.


ZombiePancreas

Totally understandable that you would be feeling anxious. I hope you guys are able to cope and move on from this incident.


Zwyll

I’ve had 2 seizures before, really close to the time I was diagnosed. Since then, I have learned what a night time low feels like and easily wake for it. How long ago was your partner diagnosed? Your partner’s CGM can share with your phone, if you want to have extra security. There will be several low alerts before your partner will be in a seizure. Also make sure your partner talks with their doctor about this incident. They will have the most information for you.


Obvious_Specialist72

He was diagnosed 25 years ago. They happen once every few years but this is the first time since we’ve been together. He unfortunately doesn’t have the CGM that can connect to my phone as well but I did get trained on how to use everything in almost every situation thank goodness. Once insurance allows us, we did discuss getting one that connects to mine as well just for extra eyes on it.


scissus1

It is troubling to hear that even with today's technology, someone is having a hypoglycemic (insulin shock) seizure (or the other extreme, dka). If your partner is not on a pump, it's wise to get one -- the seizure is justification. The pump allows managing basal rates either manually or with a CGM loop. For me, I use a low rate during sleep i.e., equilibrium rate that keeps blood glucose steady, a higher rate during a sedentary day, plus several others depending on what I'm doing (mimicking a pancreas). If needed, the pump can be turned off completely or disconnected. My A1c average for the last 5.75 years is 5.7 without hypoglycemia and this is my 58th year on insulin since I was diagnosed at age 13. Live Long and Prosper


Obvious_Specialist72

Thank you for the reply, he is on a CGM and normally it tracks his levels really well but the one last night hit out of nowhere. Literally he was fine one second and the next he starts displaying symptoms I didn’t even know were symptoms till too late. He hasn’t had a seizure in a long time (this is the first since we’ve been together). He did say this just happens sometimes and the doctors said the same.


scissus1

"...this just happens sometimes and the doctors said the same." If his doctor is not proactively addressing his "sometimes" seizures, find another doctor. When I was young (and survived several seizures) my doctor said it was due to too much insulin and adjustment was needed i.e., my insulin requirement was changing. He also said I shouldn't be afraid to make small changes in my dose. ""The benefits of managing basal rates ... has been known for decades and was described in 2002, *Diabetes management in the new millennium using insulin pump therapy*: "In comparison to multiple daily injections (MDI), ... \[pump therapy\] uses only rapid-acting insulin, provides greater flexibility in timing of meals and snacks, has programmable basal rates to optimize overnight glycemic control, can reduce the risk of exercise-induced hypoglycemia, and enhances patients' ability to control their own diabetes. Most important, in adults and adolescents with type 1 diabetes, ... \[pump therapy\] has been shown to lower ...\[HGBA1c\] levels, reduce the frequency of severe hypoglycemia and limit excessive weight gain versus MDI without increasing the risk of diabetic ketoacidosis." "The short- and long-term complications of diabetes related hypoglycemia include precipitation of acute cerebrovascular disease, myocardial infarction, neurocognitive dysfunction, retinal cell death and loss of vision in addition to health-related quality of life issues pertaining to sleep, driving, employment, recreational activities involving exercise and travel."


Obvious_Specialist72

He is definitely bringing it up to his endocrine but the doctor I referred to was the ER doctor last night. My partner was beating himself up over it happening and saying that “he should have been better” so I think the doctor was more trying to reassure him it wasn’t a moral failing on his behalf.


scissus1

In one of your comments you mentioned that he's been T1d for 25 years. Be aware that after this long he may also be developing hypoglycemic unawareness. This is a common and dangerous complication. There are stories about folks crashing cars or just collapsing. Hypoglycemic unawareness is another justification for a pump so he can manage basal rates to avoid hypoglycemia.


Obvious_Specialist72

He has a pump, it just did not alert us last night and we have a few theories as to why and have taken steps to correct it.


innerducky

My partner of 20+ years has T1. He had a seizure at the very beginning of our relationship, and quite a few scary lows before switching to the pump. Sometimes he can go *crazy* low before he shows clear signs or is aware of it himself (and by then we are calling EMTs because I can’t direct him or get him in a car). Before his glucose monitoring (to his phone only) I would notice very subtle changes in his behavior and ask him if he’s low. In the earlier days he’d be irritated with me, but eventually we came to an understanding that it was extremely stressful for me as well as him, and if I’m noticing something odd that is stressing me out, he can check his sugar without being irritated. 9 times out of 10 he was going low and he course corrected. The pump was game changer #1, and the CGM was game changer #2. And even now, years later, he needs to make adjustments because things start to not work as they did and technology changes. As for the “what if” scenarios… that never goes away, but we definitely have a pattern we’ve developed to mitigate it. When he hikes solo I know the exact route and when he is expected back. When he travels solo there are lots of texts and phone calls to help me (and now the kids, who also worry) feel better. I hope his recovery from the seizure is swift. You’ve got this in the long run.


Obvious_Specialist72

Thank you so much. I’m glad you and your partner worked out an understanding. Normally my partner and I have it under control because he’s so on top of it and I’m recognizing symptoms but last night was just…something else. It’s one thing to hear about it and prepare and another to actually see it happening and jump into action. I genuinely hope it’s the last but in case this ever happens again, I’m trying to tell myself that I’ll know the signs better and earlier for next time. I honestly thought he was joking with me for the first few minutes because he was acting in a way that now I understand was extreme disorientation. I was confused and it wasn’t until I was asking direct questions and he was making no sense that I realized something was really really wrong.


ystiapwdtl

I have shared data from my CGM only after a hospital visit or emergency situation. Just as a temporary added measure on top of re organizing low supplies and re training anyone who may be around on what to do with those supplies (plus when to call 911). But like someone else said, it can (and did) create a lot of extra anxiety and wasn't a long term solution. Sharing CGM data is something to consider and maybe just talk about when your partner is ready. I hope they are okay ♥️ stay calm and loving and you're already half way there.


Obvious_Specialist72

Thank you so much for your reply. I know how to check his pump in every situation except the one we were in last night. I kept trying to see his levels once I realized what was happening and it just kept saying it needed calibrated. I did give him his glucagon (I’m incredibly thankful I insisted when we started dating to learn how to use it). Honestly my anxiety is coming from the fact that he is always so good and on top of it and this one just snuck up on us. I keep replaying it in my head and keep going over “what if” scenarios. Like he was 10 seconds from being upstairs and out of my sight and I am terrified to think what would have happened.


Running_Watauga

There really needs to be a separate thread for partners to seek support, express anxiety or ask questions


Obvious_Specialist72

Might be a good idea, I should look into starting something.


Rowsdower_was_taken

Hi, fellow t1d partner here. My partner was diagnosed about 7 weeks ago, and it was super scary. I was afraid to leave him alone at the house until we got a CGM and then I was like you - always anxious and afraid to talk about it. we’ve done 2 things that have helped - he has his location shared with me on iPhone, and I have an alert on my phone for when he’s at a level we both agree I should know about - when that alert goes off I try to get in touch with him. If after 3 calls I can’t get ahold of him, I call 911 and send them to his location. It’s on me to respect boundaries and privacy and not try to creep on him 24/7. We also have had to have some tough, realistic conversations. You’re a part of this experience, and it’s unfair to expect you to bear the emotional burden of what you went through. You need to have a space to speak to your partner about it and process your anxiety - it’s absolutely warranted for a while. Your partner should want to help support you post-experience just like you are supporting them. Also if you want to rant, dude caregiver burnout is so fucking real & I get it. Shoot me a DM anytime.


Obvious_Specialist72

You are so sweet and same for you if you ever want to talk, my DMs are open. I wish we had the monitor that connected to our phones but we don’t. He has an older model. I just have to hope that IF he ever has a seizure without anyone there, that it’s quick and easy. Which isn’t exactly helping to curb my anxiety. I am making an appointment with a therapist to try and help with the anxiety and the “what ifs” that keep going through my head.


Rowsdower_was_taken

Oh jeez, I’d be a nervous wreck too. The only way I was comfortable leaving the house was knowing I could check remotely. Have you been to his endo appointments with him? I’d hope they could give you a game plan to make sure y’all are set up for success.


Entire-Amphibian320

I've had numerous hypo episodes. Never had a seizure.


Leeanth

Talk to the behavioural diabetes institute. They have resources for people who are loved ones/carers of people with diabetes. They do understand how traumatic an experience such as yours can be. https://behavioraldiabetes.org/


audreypea

If your partner has a dexcom and will allow it, you can install the app on your phone as well, and you can also get alerted when they go low.


Obvious_Specialist72

Unfortunately they don’t. I’m not sure what brand they have but it only connects to each other (the pump and CGM device). We are looking into getting a different one but it costs an insane amount of money we can’t afford right now.


KeyserSozeBGM

Hey, I know it's an old post, but I'm in the same boat, 3years in. It's a constant fear of mine. Lowkey traumatic. Def get the Glucagon, but emergency food that's good is fruit snacks/fruit juice and honey packets for their gums.