Welcoming Input

Coping & Emotional Support
1

My partner has been T1D since 11 years old, he is now 62. I feel overall he is very diligent on watching his BS but in my opinion, again I’m not T1D, he tends to ride it low, i.e., 60. He has had his share of seizures over the years however, not as often over the course of the last couple, 3 years. With that being said, how often is too often? Once a year, ever 3 months? Unfortunately, he had one this morning. It always upsets me and I wish I knew a better way to cope with his seizures, rather than getting upset with him for not watching his BS. I realize seizures are very dangerous and he certainly will avoid them at all costs but sometimes, it happens. So I ask, how best to respond to it? I have the Carelink app and am able to keep track of his BS levels but thats not always ideal. I just want to be more supportive than respond negatively. Its really has to do with my fear of not being able to help him avoid the bad parts of this disease. Thanks for listening and for any input. Much appreciated.

jim in CA

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Hi @jimmydc55 if the question is how many seizures is enough for me? the answer is zero. I am comfortable to say I would never want one. If your partner has them as a result of low blood sugar I guess the question that I’d have is why take that kind of chance?

He might not feel lows, it can happen. I have a CGM which alarms early so I don’t get too low which can be a life saver. A talk with his endo about a temporary higher blood sugar target will help him regain hypoglycemia awareness.

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Hi Jim, I agree with Joe that a CGM would help if your spouse is not recognizing his lows. I am wondering when you say he is having seizures, do you mean actual seizures, or just low blood sugars? When I think of a seizures, I think of someone going into convulsions, which can happen with low blood sugars - - it has happened to me! But, these are not as common as other signs/symptoms of lows.
Anyway, to answer your question, the first thing you have to understand, is that low blood sugars will happen no matter how well controlled the person with T1D is. The main concern is how often and how severe they are. If the person can treat the low themselves (without help from someone else), this is considered a mild low, and is not as big a concern as someone needing help to treat the low. So, I would ask you, is he treating the lows himself, or asking you to get him something like juice, glucose or candy? If so, these are mild lows. He is recognizing that he is low and is doing something about it. Or, is he passing out, or not aware? If this is the case, it is definitely something to discuss. NOT while he is low - - much as we try, we cannot comprehend well when out BG is low. Wait until he is feeling well and his sugar is stable. Then let him know that you are concerned about his lows. Ask what you can do to help and listen to his response.
My husband thought that I was having too many lows for several years. He would yell and get frustrated, which only scared me when I was low (usually about once a month). He kept telling me, “You need to take better care of yourself!” I was. He just didn’t recognize that the lows are a normal part of living with diabetes. My response, unfortunately, was to Not take care of myself, because I was so frustrated that he didn’t understand.
We went to a retreat for adults living with diabetes. That changed everything! He apologized to me and we finally talked. It only took 30 years, but he finally “gets it.” We’re hoping to do another retreat this Spring. It is a group in Seattle, WA and the retreat is for T1’s, T2’s and T3’s (caregivers/family/significant others). We live in AZ, but I am so glad we decided to go!
That’s my story, and my thoughts. Please let me know if you have any questions!

Pam K.
T1D 58 years and counting!

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Hi jimmydc55,

I was your husband until about 12 years ago, so I know exactly how he is thinking. I didn’t even own a tester, wrongly assuming “I could tell” if I was high or low. My wife used to tell me that I was having seizures on the regular occasions I went unconscious, but I chose in my endless wisdom to ignore her. I even asked the GP once if my general well being with T1, ie. no long term complications, was because I “bounced on low”. She nearly slapped me and told me firmly that it was never good to go low.
In my endless wisdom I chose to ignore her.
That was until my daughter found me one morning struggling to stand and to get the spoon into my mouth with my breakfast food. But it was the grief she felt for a long time from the animal noise she said I was making that made me finally wake up to myself. It was OK for me to choose to risk my life, but it was not OK for me to force this onto my wife and daughter.
I was guided to an endo by the GP - no, I’d never been to one in the 36 years I had lived with T1 - and they proceeded to educate me about the (serious) errors of my ways. They reset my severe hypo-unawareness and put me onto a whole new regime of MDI, complete with a tester.

I understand your husband’s thinking, but he needs to made aware of the unnecessary and negative impact his actions are having on those around him. One seizure is a warning that things are going dramatically in the wrong direction. Two is simply clumsiness, but three is selfishness.

Alex (of OZ)

5

Hi @jimmydc55 . You’ve gotten some excellent advice already so I’ll try not to repeat too much.
We all have lows occasionally - and ironically considering our condition involves high blood sugars. Sometimes they occur because we miscounted carbs and took too much insulin; or because we didn’t adjust for exercise; it maybe we expected to eat at a certain time but the meal was late or simply inedible…
Other times, they occur despite the fact that we are doing what has worked in the past - but it’s time for a change in regimen. Those of us on pumps occasionally need to tweak our basal rates and/or carb ratios; and those on MDI may need to make dosing or timing adjustments as well. It can be tricky trying to find the right balance but if he is having frequent lows he needs to work with his doctor to make adjustments that will keep him safe if he is not comfortable doing it on his own.
Some people aim for tight control and want to keep their numbers as close to a goal number - not too far above 100 - as possible. I recall when “tight control” first “became a thing,” people who had been able to handle lows on their own were being hospitalized with them as they were being too aggressive. Needless to say, that was not a good or healthy thing. If your spouse wants to stay in tight control for his health over the long term he needs to work with his endo to find the balance where he can continue to be healthy, happy, and enjoy the life the two of you have.
As others have said, a CGM is key. I consider it the best tool for diabetes management - even over a pump - because it gives us knowledge and power we did not have with fingersticks. He can share his readings with you so you can pick up on what’s happening at any time, and offer to share a snack, or call him with a gentle reminder he may want to get one.
I highly recommend you check out the book Think Like a Pancreas by Gary Scheiner. He has diabetes and works in the field so has a unique personal perspective that is particularly helpful. I read it for the first time a couple of years ago and got some new insights - and I’ll be in the 60 year club next year!

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Thank you all for your kind words of encouragement and wisdom. It really helps to have people who are in the know and who have experienced exactly what I am expressing. I am not alone!! My partner uses a Medtronic pump cgm so yes it does alarm when there are lows and when there are highs and when the line is blocked and well you get the picture. Poor guy it is not an easy road to have to live with T1 so it can be frustrating. Again thank you for your time as I really appreciate it! Stay healthy!

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Hello Pam! thanks for your input, much appreciated. I can so relate to your husband’s response and then yours in return. I like to know more about the retreats though and how we could learn about them etc. I think we would be open to attending one of those retreats. Thanks. Jim

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Hello Jim. Communication sometimes can be difficult when living with a loved one with T1D and we have to figure out ways to effectively do that. My brother has now lived with T1D for about 13 years now and when his blood sugar levels go low he doesn’t feel it until it is close to 30 or so which is very scary. I noticed you said you use the Carelink app which is with the CGM and my brother also uses that as well. You asked how the best way to respond to the seizures would be and my advise would be to try and find mechanisms or things that may help with stress or anxiety and practice them over a period of time. Doing this may help any stress that could be induced in terrifying situations. I completely understand when you say that fear ends up playing a part in the negative response and I want to let you know that, you are not alone with that. Other people have those immediate kinds of responses and I think that if you are looking for a way to help respond better maybe find things to help with any stress or anxiety that could be attached to it or even research about some methods of diabetes communication that would have recommendations. Thank you for sharing your story and thoughts and I hope for the best for you and your partner.

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OMG…seizures are super scary for the person watching! My hubby had grand mal seizures all the time at night until Medtronic came out with their CGM. He has now switched to Tandem/Dexcom. He has the low reading set at 70 and has been seizure-free since Medtronic’s CGM. I would urge you to suggest a CGM. They are indeed life-changing! I say this because the worst one the hubby had was back in the early 2000s. He creamed about 12 mailboxes along a busy county road and passed out in his battered truck. A sheriff who checked on him had enough sense to notice the melted ice cream spilled on the seat and see that he was wearing a pump, which was hidden under his shirt. It was a costly seizure, not only to himself, but to our truck and all the mailboxes we had to replace and reinstall! It could have been far worse. CGMs are worth every penny, if just for peace of mind.

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I’ve only been T1D for two years and four months, so take my advice for what you will. But from my experience avoiding lows as much as possible, and erring on the side of being too high (not that I want to do that either), has been much better for my physical and mental well-being. Lows feel terrible, I’m surprised someone would put up with them so much. I also realized after avoiding them more that my whole body felt better and I had more energy (both mental and physical) and hurt less when I started trying to not go lower than 100 (or 90 o/night). So one thing he may want to consider is that it will just feel better to avoid them more.

I assume he is going low b/c he’s trying to avoid highs–there seem to be (at least) two types of Type 1’s–those who are super concerned about lows, and those super concerned about highs. I was the latter for almost two years until I realized transient highs just aren’t as bad as transient lows. That being said, if he is scared of highs, you could mention that lows too have long-term risks that are actually similar to having too high of blood sugar: Low blood sugar effects on the body: Long-term and short-term effects. So it’s important to avoid lows, not just for short-term consequences, but long-term ones as well.

I also wonder about the siezures–like someone else mentioned, are these actual siezures? Or is he shaking b/c his sugar is low? I would get a doctor’s input on this. I’ve been in the 60s many times and have never had a seizure, though I shake. I’ve been in the 40s a few times, and have been really shaky then, but it’s not a seizure. If he is losing consciousness frequently I would definitely get a doctor’s input to help with avoiding this, and emphasizing how important that is, if possible.

Final thought–yes, lows are simply unavoidable w/ Type 1, unless you’re willing to average like a 180 or 200 blood sugar or something, which isn’t good either. Unfortunately, it’s a fact of T1D life. The key is to avoid them as much as possible–for me, I used to go low multiple times a week, like in the 60s. Now that happens maybe once every other week. 50s are really rare. So much better that way. I wish you well. You sound very understanding and your partner must be lucky!

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I 100% agree with everything @BKN480 said & I have T1D for almost 30 years.

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Thanks so much to all of you! Overall, my guy takes very good care of his health so there’s comfort knowing there are many out there who have had the same experiences. So thankful for this community! best of health to you all!

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Hi Jim, Sorry it’s taken so long for me to respond. The Retreat is with Type 1 United in Seattle. It will be in March this year. Registration is happening now!

~Pam K.

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One is too many, far too many, im newly diagnosed but I’ve been experimenting for months and I’ve discovered that riding low is horrible for you in so many ways, let alone the short term, I feel like he could be damaging his body permanently, in fact he is, any endo will tell you that low or high numbers damages your body irreparably after long term lows or highs constantly, and consistently, personally I used to love staying at 200 for example. I have since been staying within range for months, I’ve noticed it’s a lot of training your brain. If you stay at a certain number that you stay at a lot then you don’t have the thought to change it. Mostly because you don’t see the apparent problem at hand. As a T1D patient I can confidently say that is a problem, and one that you and him should work on changing ASAP, especially considering these. Now, with that said I am not an endo, simply a patient. Though a lot of T1s will tell you that this is unavoidable, while they’re right, sometimes some can blow it out of proportion and be dangerous with this in mind, I have no idea why or why not, but I can say that a lot of people that have it under control, which can look different for each person, if he has a CGM, then his chart technically should look pretty, you know, in between the lines, maybe even occasionally just above or below, but staying the same other than raises and lowering for meals (that’s according to my endo team at Vanderbilt University Health Center) and highs or lows should not be a problem you face often, if handled properly. The way I look at it is, it’s like driving a car, you can swerve and have your car out of control, and if your going the wrong direction swerve to the other, repeat, or you could slowly turn (i.e. dealing with your numbers early, which includes staying at 100-120 where you can, range is technically 80-180 however so try to take that into consideration especially before exercising or doing insulin, lower numbers usually mean higher carb meals, highs are usually lower, this is not a rule however) especially lows are dangerous, extremely so. It seems like he might have to take his range into consideration and I suggest getting his time in range, you can see this on apps like Dexcom clarity or apps like it, 70% to start with, and work up to 80%, having constant lows according to any endo is a major issue, especially if it’s more than once a week, same with highs, if these are rare and on holidays, it’s fine, but otherwise it’s incredibly dangerous and probably feels horrible without him realizing it because he’s gotten used to that feeling, this is just the info my endo team has given me and taught me, I am no doctor, just taught by many

I wish you and your husband good health, and happy hunting