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
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.
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?
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.
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.
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.
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.
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?