Type 1 diabetes can be such a high maintenance medical condition. It's not like you take a pill in the morning and watch what you eat and everything is fine. No, I have to be on the situation every three hours. I test a minimum of five times per day, more if there's a lot going on. I take shots four times per day; again, more if there is a lot going on. I have to have certain types of food available to me every day and at specific times and quantities. I can't just eat anything. So again, I have to be on the situation every few hours--constantly thinking about the next shot, test or meal.
Lately I have been experiencing some vision complications. I have had several rounds of laser treatment, several shots of Avastin, and one vitrectomy. All done in an effort to keep me going. Right now I'm working, driving, taking care of myself, my family and important obligations. I can't help but wonder what's going to happen to me if I get to a point where I can no longer see well enough to BG test or measure up the shots, etc. Who is going to take care of me and stay on top of my health care every three hours to the level that I do for myself now? Anyone else ever wonder about this? I'm curious what other people's plans are for their future and health care should they become debilitated from the disease, or just plan old.
I totally agree with you on the high-maintenance bit. It's hard for other people to understand that I have to pay attention to diabetes every few hours.
I wanted to add, as well, that you can still do everything you are doing now even with vision loss (with the exception of driving)! There are glucose meters that have large, high-contrast displays or even ones that have speech output for all functions, including things like tagging readings and accessing memory. Insulin pens are totally accessible without vision since they click for each unit dialed up. (There are adaptive aids to enable a blind person to measure a syringe, too, if that's preferred.) I've been legally blind my entire life and manage Type 1 diabetes totally independently. I even use an insulin pump and know of several other visually impaired people, even some totally blind people, who use pumps. I also work, am in graduate school, volunteer, get out and about in a major city, and do everything anyone else would do independently. I just have to do some things vision is normally used for a bit differently.
I plan on taking care of my own diabetes for as long as possible. I think that the only reason I would give it up were if I was mentally incapable of making appropriate decisions. I don't really think about this much since I assume that if I get to this point I will either be in a hospital or in a nursing home. If it's the former then it's hopefully temporary, and if it's the latter then I'm hopefully so old that complications won't have time to develop before I die, anyway.
One of my biggest concerns. Who the heck will manage my D if I can't? My husband/best friend passed away 3 years ago, and there's no way I would burden my kids with my care. There's no one who would spend the time I do managing, especially as I'm OCDiabetic. No one else could know my body as I do, the little tweaks I do, what my BG is likely to do in various situations, etc. All those little everyday things.
I suppose the best I can hope for is to keep my mental facilities (such as they are LOL). I honestly don't want to be here if I'm too far gone to manage my own D. I guess that if I'm demented though I won't care?
Hi, Jen: I really needed to hear from YOU on this. You have encouraged me greatly. I hope to be able to stave off any further vision problems for as long as possible, but the nagging question is always there in the back of my mind--Who is going to do this for me when/if I can't see well enough to do it myself. Your reply is a huge help.
By the time I got around to seeing a doctor and was diagnosed, I already had major vision issues and PN. As I brought my BG down it all got worse. For the first 3-4 months I could not manage the meter or even tie my shoes. When you can't feel with your fingers it is hard to compensate for loss of vision.My wife did almost everything for me. It was awful having to be so dependent on some one else. A year later things are much better. I use an AccuCheck Compact Plus so I do not have to handle the test strips. I can tie my shoes. It is still very difficult to do many things though. Laser surgery number three tomorrow. Shots last week. But things are going the right direction. Having had a taste of what it might be like, the answer to your question is I hope that I never get there. I am doing everything I can to make that happen.
