1. You can never JUST eat. For nearly every bite, you have to think: what am I eating, how many carbs are in this, what time is it, how long has it been since I last ate, how much insulin do I need to take, how long is it going to be before I can eat again? Pack snacks wherever you go, like a little toddler.
2. The constant roller coaster. You eat, your blood sugar goes up, you take some insulin, blood sugar goes down. Now I'm too low, gotta eat something again, now it's too high, gotta take more insulin. (YOUR body regulates all this automatically without you even realizing it is happening. Mine... I've gotta do it "manually." And it rarely works out perfectly.) It's a constant swing between the high and the low, and seldom does it camp out for very long in that perfect middle range. Being at either extreme feels HORRIBLE, and the huge swing between the two also leaves you feeling like crap. Other things can affect your levels besides food, such as emotions, hormones, stress, and exercise... so it's hard to predict.
3. You can't go anywhere without plenty of "equipment." First comes insulin. Needs to be at room temperature or refrigerated longer term. But not frozen! And it doesn't keep forever so you can't store it up for emergencies. 72 hour kits? Sorry, it's whatever you've got on you and then you're the first to die. Next you need your way to deliver the insulin: Syringes or pump. Syringes are fun to carry around. They make people at airport security go all bomb-sniffing-dog on you. Or people in restaurants sometimes give you the stink eye assuming you're a druggie. My pump is great, but also has oodles of needle/inserter/tubing/reservior that needs to be changed every couple of days. So be sure to pack all of this plus a little cooler for those campouts. Then you have a glucometer that you must use to poke your finger and test your blood sugar level 4+ times a day. This baby also requires needle refills and test strips. Don't leave home without it!
4. Would you like to guess how much the above list costs? On a monthly basis... you don't want to know.
5. Good luck looking into your options for private health insurance or life insurance. You just take what you can get. Mostly they don't want to have anything to do with you.
6. Your body cannot heal or fight off infection as well. If you get a little scratch on your arm, it's there for 2 months, and it scars. Everything scars. If you get bronchitis or a UTI, you get it worse than everyone else, and it lasts longer, sometimes resisting treatment. Prepare for LOTS of dental bills as well. An eye doctor once told me I could not be a good candidate for Lasik surgery because the tiny vessels in the eye were more prone to problems and it would be too risky.
7. Neuropathy. This basically feels like someone put small shards of broken glass in your tennis shoes, then told you to stuff your feet in there and walk around like that all day. Except you can feel it even when you're not upright on your feet, and not even wearing anything. Then you keep checking your feet because there MUST be something there, and it looks just fine. Phantom pains.
8. The constant threats to your longevity. Now I am more at risk for stroke, heart, liver, or kidney disease, blindness, amputation, and can expect years taken off my life. That's really not fun to think about.
9. The fear that I will pass out... while driving, and hurt someone else or my own family. In public, and who knows what would happen. At home, with only a small child here who cannot call for help. (Thankfully, none of this has ever happened to me, and I do my very best to keep it that way. But still, you hear stories all the time.)
10. Because it's a big deal. Sorry if I'm freaking you out by this grumpy and negative rant! I actually don't mean it that way at all. I only hoped it would be interesting to "walk in my shoes" for just a minute. Too often I think people brush off this disease because it's SO common these days! We think it's another thing to see a doctor for and go take a pill. Well, shoot. It's not like that at all. Sometimes I feel lucky that I did not acquire my Type-1 diabetes until I was 29 years old. My entire childhood was free of these hassles and worry. Sometimes I feel relatively "new" to the disease (7 years now) and I'm still figuring some things out. Sometimes it's just nice to share all your junk with everyone else and hope that they understand just a little bit.
Thanks!
10 comments:
I truly cannot imagine--and am so sorry you have to deal with those things! That has got to feel exhausting many days...
big hugs from me! :)
I totally get what you just said and it is all true. My husband is Type 1 diabetic and he has been for 20 some years now. It is a constant battle to keep blood sugars where they need to be, but the long term health is worth it. We are still learning much about the disease but working together we are able to do pretty well. (my husband doesn't like to think that he needs me to help him. He is really great on his own to manage the disease but I like to know how much insulin he takes, when and how much he ate....just so I know. It is a lot of work and know that I completely understand what you are going through (through my husband, not myself)
Hugs from us, we hope you are able to manage it on a daily (oops....hourly) basis.
I'm sure I knew all those things about Diabetes separately, but seeing them all listed there together makes me see that I don't really take it as seriously as I should. I just didn't realize all the hassle and stress and sad thoughts that go into it. :( I'm glad you find things like crazy crafting competitions and saving up for perpetual NYC trips to keep your mind off it all. ;)
I can't imagine. My 10 year old niece was diagonosed a year and 1/2 ago when she was only 8! It is so hard. Do you ever visit Lindsay's blog called Delighted Momma? She is diabetic too!
I think we all forget sometimes that you are battling this huge illness on a minute to minute basis because you are so organized and have so many fun things going. You don't complain and you live your life to the fullest in spite of...or maybe because of this. You are inspiring regardless, but throw the fact in that you have this burden to carry around all the time and I am super doubly impressed. Now I know that's not why you wrote this. But I wanted you to know anyway ;)
Dude! I totally thought that you'd had diabetes forever! I didn't realize that it was a somewhat recent development.
Anyway . . . I too am very impressed with your unwillingness to let it affect your love of life. I'm so in awe of all of your projects and busy-ness in spite of stupid diabetes.
You get my hero award.
Aw I gotta hand it to you. I've thought about that many times - about how inconvenient on so many levels diabetes is. But like you said, at least you didn't have to deal with it until you were 29. That is a blessing right there!
I did not know some of those things. Such a scary thing.
That skirt rocks. You are amazing!
I second Lindsay's comment about not really realizing the gravity of your illness until seeing it listed out. I can relate to a few of those things but man, it does kind of suck. And yet you handle it with grace and dignity...
Did I see something about another NYC trip? Hmmm. I was just thinking today about how fun it was to get locked in our room <>
I also live with the wonderful disease I am still maxed out on pills I know I will eventually have to have insulin injections I also worry my children will end up with it and tell them everyday to take care of them selves better then what I did!!!
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