I’m so upset right now that I’m here to vent so forgive me in advance! I was diagnosed T1d 5 months ago and my husband knows next to nothing about my disease.
I had one low (46) and he asked if I wanted him to bring me some insulin. “Uh, that would kill me but thanks anyway”
This last week my anxiety has been thru the roof. I’ve never had anxiety before other than 1 medication induced episode 13 years ago. I’ve been taking cipro for a UTI and it might have caused the anxiety or it could be that I’m turning 50 in a month and the realization of my disease is settling in and my family is rather clueless. The jury is still out on the cause.
So, for the ranting… I was just woken up by my CGM alarm. I went to the kitchen, ate and returned to bed. The alarm went off again with an urgent low of 63 with a downward trend. So in less than 10 minutes it dropped 16 points. I asked my husband (who was awake) to please go back downstairs for some quick sugar. HE REFUSED!! Said if I needed something I should get it myself that it’s not his responsibility. Wth?! I am a very even tempered person and I flipped out on him (low sugar,anyone?!) Classic sign but he wouldn’t know it.
I’m just so frustrated and angry. And alone. (I have 4 kids…2 in college and 13 year old twins. My 78 year old mom texts me when I’m low…super sweet…but she slept they her alarm too.).
I’ve handled this disease without a single tear shed. No pity party. Just head on handling it like everything else in my life. I’m not a whiner but feel very worried. Any words of encouragement or do I need to learn to handle this solo? Do you keep sugar in bedroom? I usually leave my bag downstairs. Hmmm.
In the first place, this community was founded on one fundamental principle that was and is the bedrock of what we are: that no diabetic should ever have to feel alone. It’s meant to be a safe space and we all do our best to make sure it stays that way. Or, to put it another way, if you can’t rant here, where can you? “Ranting R Us”.
The practical issue first: If you are an insulin user, you need to have sugar readily available. Full stop. I keep it in the bathroom next to where we sleep, in the glove box of each car, in my office, in my briefcase, and more often than not in my pocket. Without addressing the question of support (or lack thereof) from significant others, it is first and foremost our own responsibility to take care of ourselves. So that’s a long winded way of saying yes, keep it on the nightstand if you need to. I do.
About that issue of nonsupport . . . getting this diagnosis is such a jolt to the person receiving it, it’s easy to overlook the fact that it can also be a shock to others too. Denial isn’t always restricted to the person who was diagnosed. Sometimes it takes time for others to come around and face reality. I don’t know enough about your circumstances to know whether that applies, and it may not. But at least consider the possibility.
And regardless, you have support here. Unlimited support. Always. I know others are going to chime in here, so I’ll just leave it there except to say, you’ve come to the right place. Welcome to the family!
My partner was really weird about my diabetes at the beginning when I was only getting diagnosed… We had LOTS of fights, because he acted like it’s something I brought on myself and also like it can be cured. I spent enormous amounts of energy to educate him about most things he needs to know, ESPECIALLY about the fact that NO I don’t need insulin when I’m already low (this is one of the creepeist things for me, that one day I might have a bad low and someone will inject me with more insulin,… ugh… I hope I can get on a pump sooner later than later).
I also have some other health problems and for a long time I had this weird feeling he is so proud the he’s healthy and all and I’m somehow a worse person than him for not being as healthy.
The main problem I think was that he simply did not understand how it is to be chronically ill… After one of the biggest fights he told me to inject him with insulin so he can see for himself how a hypo feels like. I said I would NEVER do that to him and even if I wanted, I have no idea how much insulin to give him to still be safely brought back to normal levels.
After some time, I think he became a bit more accepting and he DOES bring me sugar or whatever I need, also he now has some minor health problems of his own (like Raynaud’s phenomenon and some ortophedic problems with his wrist…)…
But all in all, “healthy” people, no matter how close they are cannot understand us completely, ever, and only now I’m learning that… Even people who have chronic issues but not diabetes have problems with that (which is understanding, I don’t know how someone with, say, MS feels either) and it’s sometimes pointless to try to make them understand. I’m now trying to ask people around me to just please support me and believe me.
@KellyW - first off, well, what @David_dns said so perfectly. You are not alone …
You will find awesome support here on TuD because we are all walking a similar path, therefore we “get it” at a level your spouse doesn’t, can’t and hopefully never will (because that would mean he would also have diabetes).
Like David, here is some practical advice - keep glucose tablets at your beside table. I keep a tube of ten (I call it a ToT, BTW) and I make sure it is full when I go to bed at night. Also recognize that the Dexcom CGM will have a delay in catching up to a rising BG treated appropriately, so you may receive false alarms after treating for a low BG.
The confusion of when you need insulin and when you need food is extremely common among sugar-normal people, and my wife is no exception. I know she cares about what my BG is doing and she wants to do the right thing, but she doesn’t live with it 24/7. I give everyone who is confused total slack.
My own diabetes management philosophy follows from the idea that no one can understand what I need better than me. So that means I have to deal with it on my own, totally mine, every step of the way, no tears, no pity party. Other people have their own burdens that I don’t understand and can’t because I don’t carry that burden even though I can empathize with them.
Maybe a little T1D 101 for your husband would help. Something really simple?
Well said, @YogaO. i started out married when I was first diagnosed. I took on all of the tasks and responsibilities of calculating insulin doses and delivering it. My spouse was supportive and tried to add some new meals that she thought would help with blood sugar management. Neither of us knew that much about diabetes, especially the effect of carbohydrates.
The emotional and psychosocial aspects of diabetes is difficult to communicate to a non-D person. In fact, I find managing the social aspects of diabetes at least as challenging as the technical aspect. I concede that the general public, even some people you associate with every day, have a hard time understanding diabetes. The inverse relationship between insulin and blood glucose is typical. Inverse relationships confuse many. Like literacy, numeracy is not 100% in our society.
After four years with diabetes I started to live on my own. I grieved that I had no safety net that another close person represented but many good things came from my solo life with diabetes. I finally took full responsibility for diabetes. If I didn’t do it, it would not get done. I had some scary lows that may have been caught and prevented by a spouse. But I realize that couples do not spend 100% of their time together.
For the most part, my total acceptance that this a solo flight and I don’t expect or depend on another person to help has had a great effect on my attitude and persistence.
I recommend to communicate with your spouse about things that might help give him insight into your experience but don’t expect anything from him. You can do this on your own and it will give you benefits for the effort. Perhaps over time your spouse will see the potential benefits that can accrue for him and as a couple if he changed his attitude. But expecting that to occur will likely eat at you and cause you hard feelings. Try not to let that idea seep in.
So, the answer to your question is, yes. I feel unsupported by my spouse since I have no spouse. Life is good; no one is to blame. I take full responsibility for my diabetes and a special joy when I do it well!
I have a great relationship with my spouse of coming up on 35 years, and she’s been understanding ever since I was dx’d (though I think partly due to the advent of CGM last year she’s letting me know she’s kinda maybe heard enough about this stuff–but hey, that’s why there’s TUD). I’ve explained to her about my knees locking up and cone vision and all that, and she’s always concerned when I go out for a bike ride that I’m glucose tab-enabled. But I’ve had my share of trying to explain what hypos are all about and why they’re different when induced by artificial insulin vs just feeling kinda trembly-wobbly when you’re late for a meal. Like how there’s something shoving it down and you don’t know if it’s going to stop–difference between a roller coaster dip and driving your car off a bridge.
BUT… I can see why people don’t get it because I didn’t get it either until I had one. It was sometime during the week after I was dx’d at age 28. I kinda had this idea that the warnings about it were like the ones on the Excedrin PM or whatever. Might feel a little drowsy? That stuff almost never affects me. I think this misapprehension might have been confirmed by the fact that it was a matter of some days before getting my BG down out of the near-DKA range it had started out in. As I recall I’d taken a nap and maybe hadn’t had lunch or something, but when I got up, holy SH** did I know this wasn’t like those labels and was no kind of joke at all. Scared heck out of me. Fortunately there was plenty of OJ in the fridge.
I have to say, this an issue that personally means a lot to me. I think it is very different when you have diabetes and then meet and marry someone. My wife and I had been married for 15 years when I was diagnosed with diabetes. This wasn’t something that my wife signed up for. She has never really understood it and has not really been very supportive. And I didn’t get the support I needed from my extended family or friends either. It isn’t that they don’t want to support me but the often just don’t get it.
And in the case of my wife it hasn’t really changed over the years. She basically feels like I can take care of myself. I have asked her to learn to inject me but she refuses. I took over all the shopping and cooking because she wouldn’t accommodate my diet changes. She has changed over the years and now eats like I do and is happy but it was a bit of a rocky journey. And I have tried to take her to doctor visits or diabetes conferences with mixed success. She went to Friends for Life last year but didn’t really attend the conference, she attended so we could visit Harry Potter World. She will go to TCOYD this May with me but by her own admission she finds it “boring.” She has no interest in diabetes even though she realizes it is a deep part of my life.
In the end, more than a decade ago I found the on-line community. I joined my first forum and mailing lists in 2006. And I have a local support group that I have helped run for years. But local support groups are fleeting things, you only meet every month for an hour or two and it is hard to establish enduring friendships. In the end the on-line forums allowed me to meet others who really “got” the diabetes thing and I now have dear friends who I have known for years. And in truth, it is perhaps unreasonable to expect that a marriage will provide you “everything” you need in terms of support. For that you can turn to your friends in places like TuDiabetes.
As with every single other aspect of diabetes, each case is individual. There’s a bell curve and we never know where we will land on it. Nor how that position will shift and move over time.
My wife could not possibly be more supportive, emotionally. But the technology and management are all mine. She knows the difference between insulin and sugar and when each is needed, and she gets it about carbs. But the operational details are all up to me. (Although if I asked her to get something for me, she’d jump to do it.)
P.S. Coincidentally, a couple of hours after I posted this, we were sitting in the coffeehouse downtown and she asked for a fuller explanation of how I time my meds and how they work.
This is such a tough issue. My husband is supportive and tries to understand, but when I’ve had a severe low (<50) and he doesn’t seem concerned, it can make me very sad and frustrated. That being said, I handle all my lows absolutely on my own. I don’t expect him to do anything unless I’m truly incapable of helping myself. He knows the signs to look for, but in five years I’ve never needed his assistance.
I think it really comes down to individual personalities and the couple’s relationship in general. If I were to ask my husband to go downstairs and get me something when I’m low, I’m certain he’d do it. I’ve just never asked. It sounds like maybe you and your husband have the type of relationship where you refuse each other’s requests for things non-diabetes related as well. I wonder how that makes you feel in other areas of the relationship.
No real answers here, but definitely empathy for the situation.
The Wal-Mart Relion brand of glucose tabs and shots taste okay, act quickly, and are inexpensive. I keep some in my night table and in the pantry cupboard, also my go-to bag and glovebox. I also like SweetTart Softbites for a quick boost when I’m low-ish and not trending down fast. They work reasonably fast (second ingredient is glucose syrup) and taste yummy.
Edited to add: David is right–gotta be careful not to “overcorrect” when your rescue carbs taste good!
Thank you…I really appreciate the support. And you make a great point about them being in denial, too, sometimes. This forum is great for getting quick advice from people who’ve been there! My husband is usually very helpful and is a caring person. I think this has been a jolt to everyone and since I am an “in-charge” kind of person he has been more hands off. I always have sugar with me except at bedtime. I’d been leaving it with my bag in the kitchen but I love the idea of having extra in different places. Thanks again for the support and ideas.
You’re very welcome. And you hit the nail on the head; one of the best things about this community is the ability to commune with those who have “been there”. No matter what aspect of diabetes you’re grappling with at any given moment, there are people here who’ve been down that road already and are happy to share their experience. It’s one of the things that makes this place invaluable.
One final cliché: welcome to “the club no one asks to join.”
Thanks…good to know that other’s have that creepy feeling of"what if they give me the wrong thing!" Ugh. My twins know the difference. I have quizzed them several times with “what if” scenarios.
I think you are right about never really knowing how it feels but you are no better or worse than your partner!! Every one has their thing. We are all made perfectly imperfect and I feel lucky that I have this disease over a lot of others out there! I hope you don’t let your partner feel superior to you! You are stronger than him in so many ways…simply by taking charge of your life:)
Love the ToT! Great name and perfect idea. I just hadn’t been bringing mine sugar and stuff upstairs. Will do going forward. Sugar-normal…good one! lol And, I agree that it’s my disease, my issue to handle but I think last night was a combination of being so tired, already going downstairs and then his refusal to help. I usually don’t ask for help. I’d been up a lot the night before with one of the kids and was just so flipping tired! Sometimes it’s good to share the burden but I think going forward we will share the non-diabetes burdens since this is one cross I must carry myself!
He apologized this morning and I think some education is definitely in order. He has sold Type 2 medications for years but Type 1 is a different animal and he just hasn’t taken the time to learn the details. He’s on it now, tho. Thank you for your comments!!
How long have you been type 1? I’m hoping to qualify for my pump in another month which should really help on a lot of fronts. Exercise is an issue for me so I’m excited to try the pumps as I’m hearing that helps. I hope you are able to get yours soon, too!
