In short continuing to live with it! I'm almost as scared to continue to live with it as actually dying. Having diabetes is like trying to survive on a slowly sinking ship.
i sometimes feel this too gary...i'm afraid it's going to get worse. the days i feel good, normal blood sugars I feel hopeful, optimistic..it seems so hard to achieve though..and i'm afraid too that this is just how i'm going to feel everyday for the rest of my life, like CRAP most of the time, scared of going to sleep, scared of driving, blha, blah, blah. Sometimes if I have a bad blood sugar day..at night I just pray, just get me through tonight i feel so awful and hopefully tomorrow I'll feel better and wake up to a good number. I get fearful everytime I'm high and have to give a correction, sit there and just wait, wait to test...preoccupied with it. ugh!
"Truly I'm scared of insulin". That's it in a nutshell Cindy.
i feel this way too, cindy. like, how do i do just normal things or have just a normal life, sometimes if I bolus...or know I need to do a correction and have to be someplace (drive) it makes me very nervous. I'm still nervous about dining out, so many things. it just takes so much out of us. where am i going to be at (physically) when my time for my AM basal shot comes...(with vial and syringe). I know going on a pump will make some of this easy. Even when I was getting my pump training, I had to plan to go in 1/2 hour early and sit in their lobby to eat because I was afraid to bolus, eat and then drive....I don't know. Just get so burned out and bummed out with all this sometimes.
I hear you loud and clear. I too purposely run high if I'm going to be "trapped" in some kind of out in the world situation. Sometimes in an auditorium I get stressed thinking I'm going low and I don't want to test while sitting shoulder to shoulder with strangers. My solution often is to slip some glucose tabs in my mouth and let them melt. Then I relax... til I go out and discover my BG is 300 cuz I wasn't low at all! There's so much psychology to this lifestyle as well.
Getting old and ending up in a nursing home. Or something happening that would disable me and not allow me to take care of myself. If I were incapacitated for any reason, even now, my husband wouldn't have a clue how to manage my diabetes. And the doctors and nurses around here?....oh hell, might as well OD on insulin and get it over with.
I agree with Putertech. As long as I can take care of myself, I'm not too worried about what happens. With my pump and Dexcom, I seem to be able to take care of my lows. But I don't have faith that doctors, nurses, or nursing home personnel would be able to take good care of me. One Type 2 sliding scale correction will be enough to kill me, so maybe I don't have to worry too much about others taking care of me long-term.
Yup, agree with Putertech too - that's my biggest fear. No one would be willing or able to monitor/manage my D as I do. I suppose if I end up demented I won't care anyway!
You folks are reading my mind. As long as I'm able-bodied and able-minded, I can take care of myself. I'm not afraid of lows, because not only do I have a CGM and a pump, us old ladies have to get up in the middle of the night to pee, anyway, and I can always check my BG then. I don't LIKE lows, but I CAN manage them.
But I've already had the nursing home experience, and I think I'd rather kill myself than end up permanently in one of those. I was in the one that was supposed to be the best in the city for care of diabetes, Not only did they have NO clue as to what to do with someone who wasn't T2, they were unwilling to call in the hospitalist when I arrived on a Friday afternoon.
So I suffered the whole weekend with sliding-scale hell -- my BGs NEVER got below around 400, even though they were "correcting" before each meal. I'm sure most of you know how bad BGs that high feel, but how about continuously for 72 hours? Enough insulin to prevent DKA, but my tongue was sticking to the roof of my mouth; I was too dehydrated to pee, and I was relapsing into hallucinations and blackouts, which had pretty much cleared up when I was in the acute care hospital, where the CDE fought with the hospitalist for T1 protocols.
I finally DID corner the hospitalist on Monday afternoon, and he agreed to a fixed dose basal/bolus regimen, which meant I had to watch what I ate VERY carefully. Imagine the morning when there was nothing for breakfast except your choice of cereals, orange juice and toast? I threw a fit about there being nothing I could eat, and bless her heart, the cook fried up a couple of eggs for me.
I also had to wait until Monday to consult with the dietitian, and I'm grateful that she was conscientious and open enough to recognize that I had special dietary needs, because without her, I would probably NEVER have gotten out of that place. They wouldn't release me until my BGs were stable, and of course, when BGs are THAT wildly out of control, you're not particularly mentally stable either.
So it took me 3 weeks to get out of there, when it really shouldn't have taken more than one week, if I had received appropriate care. I regret the waste of insurance money, but it was beyond my control. There is a TREMENDOUS need for nursing home education on T1 diabetes care, especially because there are a LOT of T1s who have survived a long time by now (YAY!!) and it's a given that as they get older and more fragile, they will need such care!
Agree! My deepest fear also. I'd rather be set adrift on an ice float than be dependent on someone for my diabetes treatment long term in a nursing home. I'd be ballistic, if I had the strength, & end up in the psych ward. Time to research cyanide pills.
Oh boy does that sound rough! Were you still pumping there? I'd have taken some extra bolus insulin whether the caretakers liked it or not. Heck, I've done that in the Emergency Room when the doctors insisted on keeping me at 200+ to stay "safe". It amazes me not how little people know about T1D, but how much medical professionals and caretakers CLAIM to know when they actually don't. Three days above 400 and I'd be doing anything to get my fix of Novolog... I'd be worse than a heroin addict!
Unfortunately, the day before I went into the coma, my set came out, and I didn't have the mental wherewithal to replace it. So, when my friends discovered me and took me to the hospital I wasn't wearing it. And then, after I started feeling better, I asked my nephew to get it, so I could put it back on again, and the nurse CONFISCATED it. I know why -- I really WASN'T mentally put-together enough to be trusted with it, but I learned some things that I really didn't know before. (I didn't get it back until I was discharged, and another week before I could really use it again -- after a period of extremely high BGs, you get insulin-resistant, and the old dosages don't work). And yes, I was like a heroin addict -- I WAS begging for insulin, but they wouldn't give it to me, because it wasn't TIME for it. Not that a correction without coverage for a meal did any good.
1) DON'T let anyone brush you off. If you say you're in trouble (and I contacted THREE different sources to tell them I was in trouble before I totally lost my mental capacity), then you ARE in trouble. I should have gone to the ER while I was still conscious enough to tell them my BGs were above 300 and I couldn't get them down.
2) There needs to be someone in your life who REALLY understands what you do to keep in control. They need to know how to use your pump, what your settings are, especially your insulin sensitivity, because when you're sick, this can all change. They need to know how to change them intelligently. The nurses can participate, but they or the hospitalist (who doesn't know beans about T1 diabetes) should NEVER be allowed to unilaterally make decisions about your diabetes care. It's difficult for those of us who live alone, without close family, to find such a person, but if I had had one, it would have saved a lot of grief. As it was, when I was admitted, neither my friends, nor my sister-in-law, who rushed to the hospital knew anything -- they told the docs that I was T2, which was easily believed because I'm 64, and NOT thin (actually have a pretty middle-aged shape, but not obese.) so of course they started me on T2 protocols. It's just that ONLY the CDE recognized that they were not working. One of my projects (ashamed to say I haven't done it yet) is to make a sheet describing my diabetes care in DETAIL, and distribute it to friends and relatives.
3) Just because you're old, doesn't mean you're stupid (sorry, you're going to have to wait a while for this one, Scott! :-) ) Don't let them treat you like a demented baby. Demand to know exactly what they're doing, and if you know it's not right, fight it. This gets tricky, because if you're very ill, and your BGs are and have been high for a while, you may actually need more insulin than you think you do, but it's still better to err on the side of caution. That means that your usual 1:50 correction ratio may not work, but don't let them give you a 1:5. While hypoglycemia is MUCH less likely when you've consistently been running high for a while, it can and does happen, especially when you are on the mend. And you have to remind them that you're T1. I'm thinking of a large T2 friend of mine who was given a 1:50 correction bolus when she was recovering from a leg amputation, and she threw a fit, because she KNEW she needed 1:5, but for many of us, that ratio would be a disaster. Nurses know NOTHING about individuality among PWDs (all types) and you really have to be proactive.
I dunno -- you can tell this is a hot button issue for me -- NEVER AGAIN!