Contemplate, Relate, Educate - share your perspective!
a friendly educational opportunity
This is directed at all types of diabetics - 1, 2, 3, etc.! I want to hear from you about what you wish others knew about your struggle. Make it personal - about your OWN struggle. Please attack no one else's. Read what others write. Respond ONLY in the affirmative, supportive way that we respect here at TuD. Perhaps this will help us collect thoughts for the diabetes handbook project!
This T1's Perspective
1. I actually can't eat anything I want and just take insulin. Insulin dosages are imprecise at best. I must restrict my carb portions for good control, just like you. When I eat something that's a poor choice, I suffer for it, too. Sometimes immediately. Often all night long. Yes, I can eat cake. No, I shouldn't. Yes, there are T1s who make poor dietary choices. Just as there are Type 2s who do the same.
2. Sometimes I do want sympathy for having been diagnosed with a chronic disease as a little girl. I didn't ask for the sympathy then, but I sometimes feel the lack of respect for it now and wish I had taken advantage of that then. I wish selfishly that more people knew how hard it was. Demanding that level of responsibility and micromanagement from a small child or a teen and making her listen to the stories about how she'll never have kids or she'll lose her toes... Grant me a little pity party now and then. That was rough. Please don't tell me to get over it. Of course I need to get over it. If I were over it, would I have come to a support community?
3. If I don't test 10 or more times per day, and sometimes even though I do, I can still spend much of the day low or high. I am fortunate enough to have both a pump and a cgms, and in-range blood sugars are STILL a pipe dream most days. I still test 6 or 7 times a day, even with a CGMS.
4. I know a woman who died in her sleep of a low. Many T1s are scared of this nearly every night, which is why some fight so hard for CGMS and alert dogs. The other night, my CGM awoke me after I had plummeted to 29. Some type 1s suffer regular seizures, too. I am glad I have never. I admit that I can't imagine how awful that must be to seize from a low.
5. I was diagnosed in a coma, DKA, with a blood sugar of over 1000 and almost died. I take DKA very seriously and hope never to do that again.
6. I joined here because my T2 friends, colleagues, and acquaintances did not know how to relate to my struggle to have a healthy pregnancy. For T1 women, this is perhaps the greatest struggle we face if we decide we would like to start a family. For this, we not only struggle with our self-management before, during, and after pregnancy, but we also face some of the nastiest comments and prejudices from those who feel we are irresponsible for trying or endangering our children.
7. For me, basically, I think that I share T2's desire for control, desire for respect, struggle for self-discipline, fear of complications, fear of the unknown, need for supportive family and doctors, need for better insurance coverage for my supplies and medicines (in the U.S.), and hard work toward healthy diet and exercise regimens.
Where I feel we differ is in:
---isolation (T1 is less common and we often grow up not knowing any other T1s, although this could apply to anyone living in an isolated environment)
---immediate survival needs (I am so worried about these throughout the day that the concerns I list above become decidedly secondary)
---stolen childhood/teenagehoods (where applicable, obviously doesn't apply to my LADA friends)
---generally wider swings in blood sugar, affecting our long-term and short-term safety on a more frequent basis (although this is not altogether exclusive to T1)
So, can you relate? Do you agree? What's your take on your own struggle? What do you wish I knew?
This is directed at all types of diabetics - 1, 2, 3, etc.! I want to hear from you about what you wish others knew about your struggle. Make it personal - about your OWN struggle. Please attack no one else's. Read what others write. Respond ONLY in the affirmative, supportive way that we respect here at TuD. Perhaps this will help us collect thoughts for the diabetes handbook project!
This T1's Perspective
1. I actually can't eat anything I want and just take insulin. Insulin dosages are imprecise at best. I must restrict my carb portions for good control, just like you. When I eat something that's a poor choice, I suffer for it, too. Sometimes immediately. Often all night long. Yes, I can eat cake. No, I shouldn't. Yes, there are T1s who make poor dietary choices. Just as there are Type 2s who do the same.
2. Sometimes I do want sympathy for having been diagnosed with a chronic disease as a little girl. I didn't ask for the sympathy then, but I sometimes feel the lack of respect for it now and wish I had taken advantage of that then. I wish selfishly that more people knew how hard it was. Demanding that level of responsibility and micromanagement from a small child or a teen and making her listen to the stories about how she'll never have kids or she'll lose her toes... Grant me a little pity party now and then. That was rough. Please don't tell me to get over it. Of course I need to get over it. If I were over it, would I have come to a support community?
3. If I don't test 10 or more times per day, and sometimes even though I do, I can still spend much of the day low or high. I am fortunate enough to have both a pump and a cgms, and in-range blood sugars are STILL a pipe dream most days. I still test 6 or 7 times a day, even with a CGMS.
4. I know a woman who died in her sleep of a low. Many T1s are scared of this nearly every night, which is why some fight so hard for CGMS and alert dogs. The other night, my CGM awoke me after I had plummeted to 29. Some type 1s suffer regular seizures, too. I am glad I have never. I admit that I can't imagine how awful that must be to seize from a low.
5. I was diagnosed in a coma, DKA, with a blood sugar of over 1000 and almost died. I take DKA very seriously and hope never to do that again.
6. I joined here because my T2 friends, colleagues, and acquaintances did not know how to relate to my struggle to have a healthy pregnancy. For T1 women, this is perhaps the greatest struggle we face if we decide we would like to start a family. For this, we not only struggle with our self-management before, during, and after pregnancy, but we also face some of the nastiest comments and prejudices from those who feel we are irresponsible for trying or endangering our children.
7. For me, basically, I think that I share T2's desire for control, desire for respect, struggle for self-discipline, fear of complications, fear of the unknown, need for supportive family and doctors, need for better insurance coverage for my supplies and medicines (in the U.S.), and hard work toward healthy diet and exercise regimens.
Where I feel we differ is in:
---isolation (T1 is less common and we often grow up not knowing any other T1s, although this could apply to anyone living in an isolated environment)
---immediate survival needs (I am so worried about these throughout the day that the concerns I list above become decidedly secondary)
---stolen childhood/teenagehoods (where applicable, obviously doesn't apply to my LADA friends)
---generally wider swings in blood sugar, affecting our long-term and short-term safety on a more frequent basis (although this is not altogether exclusive to T1)
So, can you relate? Do you agree? What's your take on your own struggle? What do you wish I knew?
Replies to This Discussion
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Permalink Reply by kerry on -
Melissa, You have expressed so many of my feelings as a T1. Thank you! I have such problems with the fear of night-time problems. Last night I tossed and turned but did not wake up enough to test. This morning I was 226. So I wonder, did I go too low, and my adrenalin caused my liver to release glucagon (or whatever happens that keeps me from passing out), and that's why I'm so tired this morning that I can barely put one foot in front of the other? I can't know unless I set my alarm for 2 am. But when I set my alarm for 2 am, I'm really tired and cranky the next day. (It seems on top of the blood sugar roller coaster, that losing sleep just makes me even more fatigued.) I have allergies, too, which make my blood sugars spike unexpectedly. My monthly cycles play havoc with my blood sugars. Some days it is such a battle just to be NICE when I am so tired. And it is such a battle to be self-disciplined in my eating and testing and exercising when I'm so tired. (just figuring out the @#$! insulin dose before each meals after counting out the carbs I'm going to eat, weighing or measuring or counting the food, writing down the correctional dose based on my blood sugar, adding in the dose based on my insulin to carb ratio, remembering to take that shot before I eat during the pre-meal rush at my house... it's a lot to have on your mind ALL the time. I am constantly aware of my body--do I feel slightly nauseous because my blood sugar could be dropping? Do I have a headache because I'm starting to go low? Do I feel like crying because I'm starting to get low? Do I feel tired because I'm going too high, or are my allergies starting up? or maybe both?
I feel that as a diabetic, this awareness of what is going on with my body and the need to constantly be "in control" of it, is a very constant stress in my life. So, when other stressful things happen, such as teenage stuff, or elder care stuff, I may not deal with it as well as someone who doesn't already have this minute-to-minute stress about blood sugars and insulin. I've not ever passed out, but that is because I place enough stress on myself to be aware and cope and respect that insulin is a very dangerous drug with potentially lethal side effects when not closely monitored. (and, I must say, I've probably deserved to pass out a couple of times, especially when I was young and in denial and on one shot a day, before blood sugar meters came along). I don't mean to be a grinch, but I love sweet foods, and Christmas can be pretty miserable for me, with the additional stress and busy-ness, as well as all the social occasions with food that I should not be eating. I really HATE it when a kind and gracious hostess waves a sugary dessert under my nose and asks me not once but twice if I want some!!!!
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Permalink Reply by MelissaM on -
i have had T1 for 19 years since i was 4. i was never really treated differently, but early on in my life i had to educate non diabetics what my disease was about.
yeah i am one of those T1's who have pretty much spent my whole life not really thinking about what was bad food and what was good food and yet i haven't had too many problems which i owe to whoever is watching over me because i don't think i'd be alive if i didn't have them. i was never affraid of dying in my sleep to be honest i'd prefer to die that way, but of old age, not T1 preferably.
I was a bad T1 when i was in elementary school, i'd test but not as often as i should have. my A1c's were always in the 9's at that time in my life. then in middle school i got sick and couldn't figure out what was wrong because i didn't have the flue and i just didn't feel good, so i started to take care of myself i ate better than i used to, i tested more often i changed my dosage according to what i was having and what BG's i had. that was the main problem when i was in elementary school, i just took a fixed amount of insulin i didn't test and took a shot. anyway after i switched endo's during my second year of middle school, i got a really good doctor who is the sweetest doctor i have ever met he also was a T1 and said, what works for you do it, don't beat yourself up if you have a few highs or a few lows. i enjoyed my doctors visits i felt more like i was going to see an old friend rather than a man in a white coat yelling at me for bad numbers. as the years went on with him as my endo i began to lose weight and he asked me how i did it and i told him my routine and he said that i was like 1 in i guess 40,000 people in general who could control my weight and get my A1c's lower than 8 as well as i was with the way i was doing it. that was my junior year of high school. i was so happy to see those numbers. then over the years i went on insurance then no insurance then back on and finally last year i was back on and decided im gonna get a pump and finally got one after 5 years of trying to get on insurance to get me a pump.
i still struggle sometimes to have good numbers and sometimes i want to throw something, scream and say i give up, but then i remember a couple of friends of mine both who had died, but of different reason and i think. i can't die because i don't want people to hurt the way i did when they died. so i keep going i keep living and keep a smile on my face because i am still around to see some pretty amazing things like a few years ago when the olympics were here in utah, or to see New York City striving after 9/11. there is so much more to life than test strips, shots, and pills. it's experiencing all that life has to offer, the sunsets off in the west, or the first snowfall of the year. yeah i know im starting to sound like a romance novelist here but its true. don't feel to bad if you have a bad day yeah get it out cry, scream, play a sport to get the aggression out, but remember you are here because people love you and need you.
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Permalink Reply by kerry on
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You made me cry! Beautifully written! (and yes, I have written a romance novel, although it did not get published!)
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Permalink Reply by MelissaM on
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awe i didn't mean to make you cry. *hug* now go have fun eating that sugar free wafer. eww, im sorry i can't stand sugar free snackage except those frosted wafer things. YUMMM.
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Permalink Reply by kerry on
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It was a few tears in the way that you sometimes cry when you see something very beautiful... yeah, I get teary-eyed during Hallmark commercials, too!
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Permalink Reply by Adriana on -
I know what u mean in number 2 and 6.
Also its even a struggle for me to lose weight even though i eat right and drink lots of water. I also have hypothyroidism so it makes it hard for me. I am depress and have a very low self esteem. Even though im engaged to the one i actually love. I feel like sometimes his there because he feels bad about me. I was diagnose when i was a baby and like you said i almost died too. My mom used to pray every day and now she is not the same. She has gain too much weight because of me. I sometimes wish I wasn't the one with this illness but then again im great full cause i learn so many things i learn to appreciate life. I cannot say i am the one struggling only because also my family suffers from it. Too many times in the hospital because of negligence in school. No one believed me i had diabetes, one teacher even said i was provoking it just to attract attention. And i agree T1 are very isolated i didn't know no one with this same illness as me until i went to college and open up more to the world. Also i don't know if i got it right but if your meaning that us as T1 kids and teenagers didn't do many of the stuffs normal kids would do, i also agree. I couldnt go have fun with friends cause my mom was always protecting me from everything. To be honest, im 20 years old and i've never been out of town or camping without my family. She would kill me if i ever go without her permission she said that i would have to move out the house in order for me to go out of town. Im the only girl i know in this town who is 20 and still has curfew. so yeah idk if i got your topic right but yeah this are my struggles =(.
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Permalink Reply by MelissaBL on -
I can relate to you there, Adriana, to a good extent. My mom didn't shield me from doing things, per se, but she went everywhere with me. Instead of letting me go out dating or alone with my friends, she'd take me out with my friends and boyfriend. She'd chaperone my school trips or I didn't get to go. When I wanted to go out of state to college, I found out that wasn't an option. I adore my mom, but I think my diabetes and her constant concern contributed to her co-dependency. I think she ran herself ragged being my primary caretaker and it leaves me feeling guilty and even at times resentful. To this day, I feel guilty if my husband and I catch a movie by ourselves. How messed up is that?
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Permalink Reply by Anna Martin on -
Wow, whenever I read something like that, I think how lucky I am. When I was in high school, I did a foreign exchange trip to France; I insisted on going to college out of state. When I talked to my parents about it later, they talk about how completely worried and nervous they were, but they didn't show it. That's something I always try to get across to parents of diabetics -- that I think it's healthiest for kids to be taught to deal with the diabetes on their own, since they are going to grow up and be their own people.
Then again, though, I'm a horrible, horrible diabetic, so maybe that method didn't work...
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Permalink Reply by Sheila Green on -
I used to be a horrible, horrible diabetic...for so long. I just came and went and did whatever I wanted. I don't really think that my mother had any idea of the complexity of diabetes. I think her ignorance (sorry M) got her through everything. I never used to be afraid of going low, because it hardly ever happened to me, my BG's were always HIGH. Now, I am EXTREMELY guilty, but there was NOTHING out there for us to learn by. I have two healthy children for which I am VERY thankful - was it just coincidental that they came out OK ? Yes, it was. Its only just over the last several years that information and technology has let us understand and deal with ourselves. Yes, I always felt isolated and insecure and never knew anyone with D. even my own sister never understood.
Sheila
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Permalink Reply by Kat on -
Most of the things you listed don't really apply to me, because I've only been a T1 for a little over a year, but I can really relate to number one. No, I really can't eat what I want or at least I shouldn't. I eat relatively low carb, because for me that is the only way to maintain good control. If I eat something with a lot of carbs or a lot of protein at once my blood sugar always suffers for it later, even if I have insulin to correct. That doesn't mean I deny myself the occasional piece of cake, but it's a treat and in my mind there is always a price tag attached. Some days I gladly pay the price, some days it's just not worth it.
Another thing for me is cooking together with friends or eating at my parents. Sometimes I get incredibly annoyed, when they suggest we cook something that is tasty but ridiculously high carb, because it seems inconsiderate that they forgot about my D. On the other hand, it shows me, that they still see me as the same person I was before diagnosis and not someone who has Diabetes, OMG! And that's a good thing. So talk about being conflicted.
Sometimes I also resent the need to always plan ahead. Do I have glucose tabs on me? How many test strips are left? Will I need my insulin and meter when I go out? Do I have to stock up on something...?
But in the end there are a lot more good than bad days and that's all that counts.
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Permalink Reply by David B. on -
Thank you for sharing your insights. I really appreciate your intention to stay focussed on the positives and your own personal concerns. Perhaps later I might fill you in on some of my own struggles if I can organize them in some coherant manner. It is indeed a struggle that I do have to keep in the back of my mind (T2)
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