It’s true most people don’t have a clue. I was married to my 1st husband for 18 yr., had diabetes for 15 of them, and he never advanced past woefully ignorant, in spite of my efforts. I’m married to my 2nd and last husband now, and he educated himself about the disease and my particular needs and routines. He’s helpful in the tricky situations, but what’s really great is, I can talk to him about all aspects and he gets it! I’m lucky.
My partner half listens to me, he sometimes says that I’m feeling sorry for myself. I know I didn’t look after myself too good, but he thinks if my blds are high or low, that its my faullt. I have really been trying lately but he still forgot I had an appt today. I was a bit peeved at that.
You know, I really don’t need my husband to know the names of my meds or keep up with my appointments but I did have to jolt him into reality when I had been diagnosed for a while. He was going through a miserable time at work and like a lot of men, is not comfortable will illness or what could be perceived as physical weakness (and like a lot of women, I worried more about him than me and like a lot of men, he let me. Smile.) I know he cares for me and takes care of me in every other way…he was just not acknowledging my diabetes too well. I told him that if it had been him, I’d know everything about it and his treatment. I told him that there were potentially serious ramifications that he might need to be on top of. I think getting a glucagon pen and telling him to make himself familiar with it did the trick. Now he appreciates a bit more what I deal with… and he worries…be careful what you wish for!
Grandma just last night insisted she got Type 1 at 8 because we were always taking her to McDonalds! We did go to McDonalds once a week as a young child so she could play on the toys. Mom contradicted me and told me I was in denial about how often she went to Micky D’s and reiterated that she is always talking to her best friend about how often we used to go! She would visit perhaps twice a month for a few hours here and there! I have explained to her Type 1 is an auto-immune disease, not caused by diet, ad nauseum. So I told her what I was really thinking… That she has Type 1 because her crappy family genes made it possible for her to be predisposed toward Type 1. Mom’s first cousin had Type 1; that is our only known genetic link. After four years hearing about all the junk food this kid supposedly ate, I just got tired of hearing it. In fact, this kid was such a picky eater that if you gave her a Mcnugget she would eat two of them and refuse to eat the rest, or she would ask for an ice cream and refuse to finish more than half of it because she was full. I do hope my cruel comment puts an end to her constant snide remarks about how we are at fault. They don’t want to get it; they want to find a reason for it and preferably place blame.
I hope I’m not intruding into the Type 1 forum, but the title of this discussion is interesting to me. I was diagnosed in 2003 with Type 2 diabetes and went on insulin almost immediately. My husband and I have two grown sons, one of whom is married to a young woman who took some nurses training. The Summer before last she and I had a heated discussion about diabetic people and how a diabetic driver is worse than a drunk driver. Since I was 61 years old at the time she told me it was time for me to quit driving. I’ve had only one ticket in my entire life and that was for not yielding to oncoming traffic. I do not drink alcohol simply because I don’t care for the taste of it. And I test each and every time before I get behind the wheel. Needless to say I think she just “doesn’t get it” either and she is a licensed public health official. I am grateful for this forum and for the people that come here who share their experiences so that all of us can benefit.
Kathy
of course, Kathy, you are welcome to join any discussion, and your comment here is totally what this discussion is about. Thanks! I hope you’re still driving.
I don’t mind so much that they don’t get it, ( well I do really ), it’s just that over the years I did not look after my D, so now that things went wrong they reckon its all my fault. No matter what the lovely D nurse says to me, I will always believe that the whole thing was my fault, maybe it’s down to a catholic upbringing. At the moment they just don’t understand why I still go high and low even when I am doing so many bld tests. They also give me this annoying look, as if to say have you not “got it” by now.
Dear Josephine
They can say that you have not got it because they do not have it. No non-diabetic medical personel has any clue of how hard it is to control BG. And they manny times they give very bad advice like high carb diets. Catholicism is guilt riden religion but never stopped the catholic politicians from stealing a lot of the taxpayer money. Because 5 minutes before death you could make it all good.
That’s it! You simply must stop doing housework 
(This is what I told myself when I had a low while trying to re-caulk the bathtub. I made a HUGE mess, oozing silicone caulk all over the place. Funny, though, the carpet still needs to be vacuumed, the kitchen floor mopped, etc.)
i think when it comes to diabetes your partner/family members can understand, but it takes a lot to explain the emotional toll it can take on you. To an outsider they see that if we do a, b, c then = everything will be fine, and it makes it easier for them to understand “solving” this disease. It’s really hard to explain the reasons you may not be doing good (for whatever reasons, not doing a b or c). Because even when you’re being good you’ll stay have bad days and you’ll still want to constantly quit. I wish it was as simple to control diabetes, like doing one thing or taking a pill, but it’s not it’s ever changing and constantly on the brain. Diabetes affects every part of your life whether you like it or not, the goal is to meld it with your life. but no matter what it will be a struggle or tough job (granted with good outcomes). I think diabetes has definitely feel a lot more negative about life, but i still try to be happy. It’s hard to explain this to people sometimes.
Would like to thank all the people at tudiabetes for really understanding and helping people out!
thanks
DOMO
This really saddens me. While I can empathize with your family “not getting it”, it is up to you and you alone to manage and control your disease. I know it would be a tremendous help if everyone you came in contact with knew the full details and facts about type 1 diabetes but that just isn’t the case so you might as well get used to it - how much did you know about the disease before getting diagnosed? There are plenty of type 1 diabetics who are active, myself included, and limiting your activity because you’re afraid of low BGs is just not smart. In fact, it will certainly make your disease worse. Type2s are not the only diabetics who need to fit exercise in their daily lives - it is extremely important for Type1s to get regular exercise to keep their bodies sensitive to insulin, increase heart health, avoid complications, etc.
Now, I am an extremely brittle diabetic with a long history of seizures from extreme lows. Because of this, I wear a continuous glucose monitor in addition to my insulin pump. It wirelessly communicates with my pump and lets me know when my BG is getting too high or too low. It’s great for seeing trends before and after workouts. If you are not able to get CGM sensors (they’re not cheap), then I would recommend being diligent about checking your BGs before and after workouts. As someone who is currently training for a triathlon, I am here to tell you it is entirely possible (and necessary!) to exercise and be active as a Type1 diabetic!!! There is a company that makes these little gel packs called “Gu”. Each one packs 15g of carbs and they come in different flavors. These are what I use (I take one every 45mins or so) when I work out. Also, I’d recommend filling your water bottle with just a little bit of OJ to keep your BG up. And keep in mind that your body will most likely be extremely sensitive to insulin for about 2hrs post workout. So if you need to give yourself a correction or meal bolus, keep that in mind!
Good luck to you, I hope this helps. It definitely requires a little bit of trial and error, but it is most definitely possible. Don’t let type1 diabetes hold you back from anything - if I can compete in triathlons as a type1 diabetic, you can certainly play tennis!!
It is bewildering of how different our diseases are. I can do prodigious amounts of exercise without going low. I really have to inject a lot of fast acting insulin to go low. Liver seems to be able to crank out great amounts of glucose so far. I wonder if you go low often if this harms the liver’s ability to deliver large amounts of glucose?
People who are not D, sometimes have a very flippant attitude as to how easy it is to control. They can come out with some hurtful comments. One girl once said to me “I know someone with D, they have no problems with it !” It’s a case of spend a day in these shoes, then they may not be so quick to critise. Well done to you on your training Rachelle, you don’t fancy coming over here to give me the push I need.
exercise is sooooooo good for your body, helps your body use insulin better
I am from the other side though, I don’t have diabetes. I am always trying to “get” it so much, sometimes I find myself all unconsciously confused, and I have to remind myself: “hey Andre, you don’t have diabetes, back off”
The only thing I can tell you is that it is frustrating for me too. Difficult to express in words, but some of us (type 3’s) are really trying our best to be there and “get it”. I know it is not the case, for what you describe, but sometimes we, from the other side can offer a different perspective to some things, and I want the best for him. and maybe, just maybe that can help… and maybe because we don’t have “it” doesn’t mean we don’t get it…
At least I like to think that…
I am not sure what your sister meant or was thinking when she told you that your: “body would just have to get use to the tennis again”, but I know that I have spent hours awake at night, when I know my husband may be high and sleeping. I try to push him to exercise, even if he is reluctant to deal with lows and he is tired and frustrated. I hear stories of people with diabetes that manage to exercise and judge low and highs. Maybe that Is what she meant, I am not implying it is easy. But only that some of us, type 3’s are only trying to help, and that even if we don’t feel the symptoms, or our bodies do not suffer complication, we fear and worry, and sometimes we talk, and annoy our loved ones. Sometimes we act out of love and fear, not plain ignorance.
haha, oh I agree. Many times my boyfriend doesn’t understand how sometimes 1+1 does not = 2. Insulin is a hormone and your body depends on a whole slew of different things to use it properly - time of day, for women, time of month, whether you’re healthy or feeling under the weather, all this plays into a very complicated equation that isn’t so cut and dry all the time. You just can’t be afraid of it. You have to be comfortable enough to write things down, experiment a little, try to control your disease, etc. I joined this site to give and get these little pushes, Josephine! :o)
I think you might understand a lot about diabetes, even though you do not have it. But the experience of being a Type 1, of having to constantly think about your blood glucose 24/7, that is not something that can be gained in any way besides having Type 1. I don’t even think there is anything a non-diabetic can compare it to because before I was diagnosed, there simply was nothing in my life that required that sort of attention and concern.
The technical details of how to manage diabetes are not the hardest part of the condition for me. In fact that is the easiest part in many ways. The hardest part is trying to live my life with this constant preoccupation with regulating my blood glucose and the emotional highs and lows (mostly lows) that come along with that. That is, not letting those emotional lows take over my entire mental state. It is difficult and often impossible, to be honest.
Lots of diabetics defiantly claim that diabetes does not define them. It makes them feel, I suppose, that they have more control over the condition than they might feel they otherwise do. I am not one of those people. Diabetes defines me to a great extent and that is the tragedy of this disease. I am not myself, not who I would be without diabetes and I often wonder what that person would be like.
I agree with this wholeheartedly.
I try to explain to people who love me what it is like to think about your blood sugar 24 hours a day. It’s not always occupying all my thought, but somehow it’s on my mind all the time. When did I eat last? How much insulin is on board? Is it time to check yet?
(Just as a side note to Andre, you understanding and showing support DOES make a huge difference!)
But I think it is really hard for people without a chronic condition that requires constant care to understand.
For that reason, I lowered my expectations. I guess I feel that it’s better for me not to expect people to “get it” because then I won’t be disappointed. But this can make you incredibly lonely in the daily struggles.
That’s why you see me on TuDiabetes everyday. That’s why I can’t get away from this place because no matter how much people in my “real” world love me, they don’t fully get it. You guys do. Therefore I am thankful for you!!
I agree, support from my family and friends who are not Type 1 is crucial and means a lot more to me than I often let on. But I am here all of the time too for the same reason- I simply cannot find the sort of kinship present here anywhere else! It has honestly motivated me to take care of myself more than anything else in recent memory and I am more thankful for that than I can put into words.
Andre, you are doing a wonderful job and that Manny fella is lucky to have you, I’m sure he doesn’t mind you kicking his bottom into gear. Sometimes I just like to moan, it’s a side-affect of the insulin, it is. Even though I’ve had this D for over 20 yrs, it can still catch me out, it changes day to day, every day is different. I have tried to imagine what I would have been like without D, I know that in the past I used it as an excuse for fear of failure. I do think though that I would be absolutely famous, with a perfect body and so much money, I wouldn’t have time to spend it, its all this Ds’ fault that I didn’t reach these heights. Well at least we have this place, I intend to moan alot here.