I spend a lot of time with my little sister, bil, and my two nieces, even went on a vacation recently to CA where I had roller coaster bgs and one severe low at 39 and they saw me pretty much a mess to the point where I was resting a lot on benches at the San Diego Zoo, and to the point where my sister said you are getting old on me. I was a mess.
Well today she told me she was going to start on a tennis league and asked me to join with her. I told her I use to ride my bike 20 miles a weekend, tennis and/or racquet ball every night when I was first married and that since pumping I just have too many lows and not sure I want to do the tennis and deal with all the lows.
Her reply was that my body would just have to get use to the tennis again, omg, she sooo does not get it.
Tonight, my wife didn’t know what I was talking about when I mentioned picking up my Apidra at the pharmacy.
“Oh, that’s insulin?”
The solitude that comes with Type 1 makes me feel very lonely sometimes. I guess if there was something someone in my immediate family was infusing with a pump all day, every day, I might take it upon myself to know what it is called. I don’t hold it against her, but it sure highlighted the isolation I seem to be perpetually stuck in.
Sure is isolating & I’m grateful we have each other here.
Oneless, sorry that your wife didn’t know what your Apridra is. That hurts. My husband is too involved. Annoys me no end when we’re out with friends & he questions what I eat. Actually, it’s more than annoying; it’s humiliating. I’m quite diligent, but when we go out I just want a taste. Not a whole meal, just a bite of something. I’m thankful he cares, but it’s more of a control thing than anything else. Every step I take, every move I make he’s watching me.
My sister, among others in my life, doesn’t get it either. I keep trying slowly, patiently to explain it to her, but she doesn’t really want to understand. She thinks it’s simply taking injections, so what’s the big deal. She treats me like it’s all a matter of willpower when I’m not up for doing something, just like Karen’s sister.
I have a Type 1 friend (was before I diagnosed). He has since moved away. I wondered if I ever said or did anything ignorant. I asked him & he assured me that I was fine, but I do feel terribly that I didn’t take more of an interest of what he dealt with 33 years.
I hear you Oneless. Had a similar experience recently. My husband cares for me a lot and I am grateful. But when something like this happens, it reminds me that the diabetes is mine and not his. But it would be easier if it could be “ours”.
Even the differences in vocabularly can make you feel so isolated. Basal. Bolus. Hypoglycemia.
I feel for you Karen. Know that when no one else gets it, we do.
I live the same experience in my family. One of my brother doesn’t know what are the names of my insulins … My brother knows I’m type 1 since he was 20 years old, 42 years ago. He saw me with my insulin pens but no question about them. That’s sad story. I’m sure it’s hard for anyone else than a diabetic to understand what it is a life with diabetes. And I’m sure we are all alone with our insulins, glucosemeters, highs and lows.
maybe you could play tennis again, maybe talk to your doc about your lows. start out small. You could always write her a letter to explain how you feel, she won’t know unless you break it down. In the end we are in charge of our diabetes, everybody else can either support you and try and understand or they can get out of the way.(mean it in a nice way)
I don’t blame my family or anyone for not ‘getting it.’ Hell, there are plenty of people WITH diabetes who don’t ‘get it.’ The disease is not visible and it doesn’t hurt. If it resulted in a giant blotches and daily pain, lots more people would ‘get it.’
My view is that it’s our job - my job - to give them a clue. I have no issues with my immediate family (my wife is my pharmacist, by bil and sil are Type II) but my brothers and sisters don’t know. Of course, they live far away. I had a low when one of my brothers was visiting and he said “Oh. I thought you were over that.” I wish. That was a moment to educate him.
On another occassion my mother called to say “I didn’t know you were Type 1. I thought only kids got that.” Another education moment. I mailed her a bunch of material.
I find it hard to blame them for not ‘getting it.’ Before I was diagnosed I didn’t ‘get it’ either.
Add to that the fact the most people are very, very, very uncomfortable around disease and the subject of disease in general and complicate it more by the fact that diabetes isn’t visible and doesn’t hurt. AND they have their own lives. As much as I’d like them too, they don’t spend as much time thinking about ME as I do.
Finally, add to the mix the fact that many of us are always throwing up the example of Gary Hall and Team Diabetes and Nick Jonas to say “See? Diabetics can do anything YOU can do!” and of course they’re not going to ‘get it.’ We can’t have it both ways and say ‘we’re just like you’ and at the same time say 'but we’re SPECIAL, so watch out for our feelings."
Part of taking control of your diabetes (my diabetes) is helping people understand the disease and what it means on a day-to-day basis. We have to give them a reason to understand
So, maybe you can lighten up on your sister a bit if you can AND try the tennis. You might enjoy it again.
We get it Karen. I’m sorry you’re having so many lows. I hope you can get to the bottom of why that’s happening. There are so many variables to this disease, it’s not easy to understand. It’s hard enough to handle a normal day, but when you factor in a vacation, time changes, and, hello, the San Diego Zoo is very hilly!
I think Terry that you have touched on something…people are very uncomfortable around disease. There are people who are jerks and people who think they know but don’t know and people who just don’t care, but for those who love us, maybe it is hard for them to face the realities. If they dismiss the seriousness, they don’t have to worry so much about us and about that secret dread we all have of bad things happening to us. It is so frustrating when you come across someone who wants to quick fix everything and assumes you are doing something wrong when you are not “fixed.” I always say it is a constant challenge.
Thank you all for all your great responses, they all make sense to me and I know you all get it.
I am going to pass on the tennis as I know 1/2 hour into any exercise, I am a wet noodle.
Today I had a good diabetic moment from a non-diabetic friend.
Last Thursday I had a whole day of bgs in the 70’s and I felt awful and I could not get it to come up, it was a nightmarish day for me.
Today with the help of MelissBL on this board I decided to do a basal test in the afternoon.
So it comes 12:30 pm today and my long time friend at work says, hey aren’t we going to lunch and I said I am doing a fast, she said ooooo because your bgs were sooo messed up and you want to see where the problem is, ahhhh, she gets it.
So we went to lunch and I drank water.
It is now 7 hours into my fast and bgs holding steady, so I am realizing it is my bolus versus my basal , and also realizing how any form of exercise (housework this weekend) messes with me bigtime.
im sure if i wasn’t a diabetic myself i wouldn’t have got it, (probably wouldn’t know what diabetes means)
and like terry said take it as a chance to educate them.
Hi Oneless, I am sorry to hear that your wife doesn’t know what your insulin is. How long have you been married? My Hubby has been insulin dependent for quite a few years now, I am so into his diabetes that its not funny it is often a source of conflict for us. Now my 14 yo has type 1. She doesn’t like how much I am into hers either.
Maybe you could talk with her and ask her for more support, maybe a little knowledge.
Sorry. The one thing I try to do for my family is not to make them feel isolated. I would gladly take on this disease than have my child have it.
My husband has no clue either. When we switched insulins he never noticed and he has no clue how to adjust anything on the pump. Sometimes i think, he ignores it hoping it won’t be as “real” to him.
Leah, I once had a problem like yours, I was sick one day and passed out after getting out of the shower nothing due to diabetes and my boyfriend called my work and told them I couldnt work, and one of my managers said " linzie has been diabetic how long she should now how to handle this" I was livid. Things can change so quickly even after being D for 17 years. I think I more mad because it had nothing to do with being Diabetic. Its so irritating.
She might not. It’s hard for people who don’t have to mind their bodies such as we do to understand how difficult simple things can be. Like, with my husband, when we were first dating I felt bad telling him that I couldn’t share my meals or snacks with him (you know how some people see when you’re eating chips or a shareable snack they go “Oh! Can I try one?”). After a while though, and as we got closer he began to show an interest in how I have to deal with my disease on a daily basis and I was finally able to say to him “I wish I could, but I had to dose for that food and if I don’t eat all of it my blood sugar might start dropping afterward”. He got it and was understanding, though I do still have to remind him.
Maybe with your family it would be a good idea to sit them down and show them a video or a book on what it is like to deal with diabetes and why certain things are hard for you - especially right now! I don’t know if you’ve done that all ready or not, but even a refresher course could help during visits.
Good luck with it. I know it can be frustrating when those around you just do not get what you are saying.
Being on the pump you should be able to adjust your basal rates for exercise to prevent low’s you could also disconnect during intense physical activity. Then use a temporary basal rate at a lower percentage of your norm for 1-2 hours post exercise to prevent residual lows.
Talk to your Dr about it. Once you get your basal/bolus patterns fixed to prevent the lows you are already having, you should be able to work in some form of physical activity if you choose.
Diabetes has never held me back from doing anything I want to do. I know it’s difficult to figure in the calculations for exercise, but it’s doable and worth it if you ask me. This is what I do for a living, it’s very complicated for me, because I’m physically active for hours on end, but just because I have diabetes doesn’t mean I’m going to change my career…I just have to work hard and figure out how to manage it all.
I do understand the frustration you feel in regards to your family members not understanding you or how to support you. But they most likely do not have enough knowledge on the subject. If you want them to understand you have to educate them. Still they will never understand it from your perspective but they will most likely have more empathy and be better able to give you the support you need.
