No, I’m not going to get over it. Yes, I have to think about it ALL THE TIME.
For me, Jean, it’s almost exactly what you described in your OP: They think I’m obsessed with diabetes and making too big a deal about it. Bottom line is to the degree I AM obsessed I need to be to get good results. That’s just the name of the game. My family are all very intelligent and so would never say anything overtly critical but I know the looks when I talk about why “they have pizza for you, Zoe” while it is a vegetarian option, no longer is a high recommendation for a restaurant choice. My brother even sat me down and talked to me in a concerned way about “why I have to eat at certain times and certain things”, though I think he tuned out before I was done answering.
I had pretty much given up and just talk on here and in my Type 1 Women’s Group about diabetes issues, though, when my brother surprised me. When I was checking into coverage to buy a pump and thought I’d have to may 20% ($1,000) my brother told me not to worry, that if that fee wasn’t waived he and his wife would be glad to cover it. I was very touched by that because I didn’t think he knew the importance of my diabetes management, let alone the pump. Then recently we talked on the phone for the first time since I got my pump and he asked in depth questions and seemed very interested and impressed. (Though it was funny when he asked if I “felt it” when the pump gave me insulin and I realized he thought it was injecting me with a needle each time. It’s hard to explain how a pump works over the phone!)
Then I realized that all those implications of “obsessive Zoe” were about food and were being thrown in with a lifetime of impressions due to my dealing with an eating disorder. So I was very happy that he does seem to get it. My friends, on the other hand are a whole different story. Especially my friend who is an RN and her type 2 husband takes the NPH the doctor ordered, tests once a day, doesn’t recognize lows when he becomes very verball abusive, etc. And my friend talks about how the hospital she works at (the VA) has a philsophy of self-management of diabetes. Sigh. Isn’t denial amazing? I think people who are themselves diabetic or partners of diabetics who are not managing their diabetes are probably the worst for thinking we are obsessive.
Some obsessive behaviour can be good. I really think that being OCD has helped me a lot in my diabetes management.
My brother likes to make fun of me for being OCD. But today I really lost my temper at him after he emailed me a report about the ACCORD study. The one that purported to show that tight control led to increased mortality in some PWDs. His snark comment in the email? ‘The perils of OCD.’
Let me tell you, I got really mad. Then I sent him back Jenny Ruhl’s rebuttal of ACCORD and felt a little better.
Ah well. It is quite likely a matter of time before he has to deal with D himself so let’s see who jokes about OCD then!
I found this on a community college class website. I think it’s helpful in the context of this discussion:
Empathy vs Sympathy
Empathy- intellectual & emotional awareness and understanding of another person’s thoughts, feelings, and behavior even that are distressing; emphasizes understanding
Sympathy- sharing another’s feelings especially in sorrow or trouble through imaginative identification with the other’s situation; emphasizes sharing of another persons feelings and experiences
I think what I want is empathy, not sympathy. I don’t want my sister, mother or friends to be depressed or scared about my diabetes every time I am depressed or scared about it. I don’t want them to anxiously monitor my bg’s just because I am anxiously monitoring them. I don’t want to cause them anxiety or pain just because I might be experiencing anxiety or pain.
I do, however, want them to understand that my concerns are valid, that highs and lows are something I have to monitor for and plan against, that yes, I will be thinking about it quite a bit every day for the rest of my life, and that no, I cannot just go back to hanging out at Starbucks sharing a dessert and grande mocha like I used to, or go sailing around town for hours on end shopping and running errands without testing and/or eating without worrying about going hypo, or just “get over it” and pretend that I don’t have diabetes for a weekend or a two-week vacation!
I have a friend (we’ve been friends for over 15 years) who got upset with me because I was “making her feel old” when I told her that I am having trouble with my night vision and with blurry vision, and that I can’t safely drive out to her place at night, in the very dark country-side (no street lamps whatsoever), until my sugars stabilize and my vision improves. I don’t particularly want to hit a dog, raccoon or deer, run off the side of the road into a ditch, or get totally lost outside of cell phone range. I shouldn’t have to just because my having trouble driving at night makes HER “feel old”. She wouldn’t even let me explain that these are diabetic changes to my eyes that have nothing to do with age per se. She literally shouted me down when I was trying to explain this to her. Yikes. Some empathy, eh?
I wish that people like this friend and my middle sister could just empathize (understand, not judge, “get it”) that diabetes is something I simply must deal with 24/7 and that I’m not “doing diabetes” as a willful act to ruin their fun, or to get attention, or to change their dinner plans.
No wailing and gnashing required; just understand in a calm, mature way that I am now and always will be a diabetic. Is that too much to ask?
'zactly.
I think that everyone is doing their best in the family, and it is impossible to tell someone exactly how does it tastes a banana if they have never tried banana, so I don’t expect my family to understand exactly how it is because they just don’t know.
That’s why I appreciate so much this community, we are connected with people and feel home 
Though family understanding and communication is also very important it doesn’t substitute the connection with others just like us.
Haven’t read the other’s comments but to me it’s you Must understand how I feel on that rollercoaster when 1 minute my bs’s are high then 30 minutes later it’s low. Boy can I cuss ppl out when I have that going on.
I have two groups of people – those that seem to think i’m too obsessive and those who think I don’t know what I should be doing (aka -the food police). So I would like both groups to know that diabetes management is a huge part of my life 24/7 and that I actually do care about myself and know what I should be doing and when. I need to add though, that just for my husband, I would like him to understand what a low and a high feel like – just once for each so he knows I’m sincere in my concern for myself at those times. He’s never really said he doesn’t believe me but I would just feel better if I knew for sure that he really did “get” it. After a low or a high that needs immediate attention I just feel so darn needy and I think that would alleviate that needy guilty feeling.
Lila,
Where do I find Jenny Ruhl’s rebuttal of ACCORD? At my last endo visit my A1C had gone from 5.9 to 6.6 and I was sad. She told me that the ACCORD trial proved that tighter control does not make a difference. I had not heard of the ACCORD trial so didn’t know what to say, but I knew that tight control makes a difference because of the DCCT trial. And furthermore, I’m a type 1, not a type 2.
You can find it here. However I don’t know how valuable this would be as ammunition against your endo because the study was on Type 2s, and they were given toxic meds.
That’s a tough one, Donna H. For your husband to know exactly what (as Fabiana put it) the banana tastes like, he’d have to be a diabetic, wouldn’t he? I mean, it’s not just the one hypo or the one hyper, it’s the days, weeks, months and years of worrying about them, treating them, feeling “oh, no, here we go again”, or “not now!”, or “what went wrong? I thought I was doing so well with my control.”, etc.
One hypo would give him a better clue, but unless there is the real threat of it happening again and again – and possibly much, much worse – then he still might think banana tastes more like pineapple than you’d lead him to believe. ;0\
I have to say that even as a type 2 diabetic who has had reactive hypoglycemia for years, I never understood what it was like to have a BAD hypo until I actually experienced one in the 30’s. Until I was on the couch, unable to lift my arms to put glucose in my mouth, much less walk into the other room to get it, or even remember that this was what I ought to do, I couldn’t picture it.
I wish that they would listen to what I’m saying about diabetes. They will listen when I tell them how to fix their car or work on their house. Just listen when I say I can eat this and not that. Hang on a minute I have to test, I feel a low/high coming. Don’t ask how I know and then tell me I shouldn’t have eaten this or that. I don’t comment on your diet or lack there of, or amount of exercise you do or don’t do. I am diabetic yes and I am living with it!
With my Mum - that I really DO need a warning about half an hour before a meal to check, medicate etc and let the insulin start working. To understand that I really DO need regular meals and snacks, and that I am not just being greedy! That I really DO need insulin when I am high, and that I really DO need sugar when I am low! My mother is constantly demanding my prescense there and then and she shouts like a fish wife even when I ask her not to shout while I am injecting! The number of needles I have bent because she has caught me by surprise is nobody’s business! And she never understands that I need more carbs, not puddings! I am guaranteed to have night lows when I am with her!
For my sister, who I met in San Francisco, the fact that one DOES sweat when one is low and there is nothing one can do about it until I have enough sugar in my body to deal with it! She insisted on walking up some very steep hills - and there are some killers in SF! We stopped for a bit when she was looking in a shop and I could feel that I was hypo. So, she wanted to look around for a restaurant serving sushi because that was what she wanted. At least with Sushi you can start immediately and not have to wait to be served, by which time I was beginning to look like someone under a shower - that is how hard I sweat. My sister’s concern was not that I was hypo and needed food but my face was wet!!! And that I had not mixed my wasabi paste and soy sauce and that I could not use chopsticks! I got on really well with her but that time I was getting close to losing it!
With other people - that the smell I give off when I am very high or going down low very quickly is NOT alcohol but ketones! I do not drink! But the number of times I have been called into the Pastor’s Office, been told to repent of acoholism, been taken off courses because I am an alcoholic I cannot count! In frustration I once offered to have a blood test done to prove that I had not had any alcohol - at the church’s expense - and they backed down!
I am sick of having to explain everything and having people not believe me because THEY know better!
Oh you are talking my language! I wish that I had your doctor! I do not have some of the problems you have, ie PCOS, thyroid etc (actually underweight becaue of all the highs which supposedly I am not trying to deal with!) but I have the ups and downs and it is not an easy condition to deal with. It has quirks we do not understand and there seems to be no pattern! All I get from my hospital appointments is “you could do better!”
I think it would be a very good idea if every single doctor and nurse, and every member of the family of a diabetic was given insulin at least once to induce a really bad hypoglycaemic reaction and then they would know what the damn thing feels like!!! And then they would know the urgency of eating a snack is all about! There should be a law saying that all Ds and Ns in training should go through this as a part of their training! And that includes the endos and diabetic nurses!
There should also be a law that requires blood testing clinics to run a special service for fasting blood sugar tests to be done as a priority! Where I live I have to walk two miles to the hospital (no buses) and so many people have cars and go early simply because they want to go early and get it over with (fair enough) but I sometimes have to wait up to 4 hours for a blood test! Simply not good enough. People who are not fasting get in just as fast as those who are!
I wish my family would understand…REALLY understand why my husband and I are such GERM-phobes! Seriously…when someone has a stomach bug, for non-D families, it’s just more laundry and a little extra attention and a day or so off from work. For US??? well, you know how horrible it can be. But no one seems to REALLY understand.
I hear you! I have a niece who thought I was a real witch with a “b” because I was “mean” to her “puppy”.
This completely untrained, wild “puppy” weighed about 75-lbs. and would come charging in from digging in the back yard, covered with filth, and start jabbing and digging at my shins and feet with her big, filthy, un-trimmed claws.
All I could see was me ending up a double amputee – which is what happens to diabetics sometimes after foot and lower-leg infections fester and go gangrenous.
I’d say, “Get the dog! Please get her off of me. My blood-sugar control isn’t good right now. She could give me a bad infection!” – and my niece thought I was being so “mean” to her precious.
I needed body armor to visit my own relatives because they simply would NOT hear me when I told them that what, for them, would be a minor scrape could, for me, be the end of walking, dancing, living independently for years if not forever. I didn’t have the strength to fight off a 75-lb. bundle of youthful, muscular, untrained dog and I didn’t have the money to go out and buy gladiator gear or hire a body-guard. :0\
I’d like it if my friends and family would quit saying (and thinking it when they aren’t saying it):
“Are you still diabetic?”
“Just eat this [high carb party] for one meal, it can’t hurt.”
“You don’t need to lose any more weight. Eat more.”
“Why are you being difficult?” (mostly said with face expressions rather than words.)
Mmmm. Yes. And to succumb to this kind of brain washing (I get it a lot) we would be far less in control!
My biggest bug bear is when people demand things of me, either my prescense or something they want without understanding that I do have to test regularly or eat regularly. I well remember working in a charity shop on the till. I told them I needed to go and test and eat and someone would need to stand in for me while I had a break. The manager kept saying in a minute … 2 hours later I was literally melting and sliding down the wall behind the till. A customer came and could not understand why there was no one was at the till, called the manager who gave me a public dressing down asking why I had not said something!
I must be more assertive now; I cannot always be the “nice lady” I used to be!!!
I had a similar incident and I just said to my boss, “I have to go and deal with my diabetes NOW. Sorry. If I don’t do this NOW, you might have to dial 911.” And then I just walked away to take care of it.
Sometimes, people will walk all over you if you’re too nice.