It sucks out loud.
Really, it does. My pump, which is clearly the best thing to happen to controlling my diabetes since I took over the reins from my mother, keeps me awake all. Night. Long. It beeps messages incessantly. "You're going high." "You are high." "You're going high really fast." "Check your blood sugar in an hour." "Check your blood sugar NOW." "Did you forget to give insulin?" "You're starting to go low." "You are low." "You're sill low, haven't you gotten some juice yet moron?" And while part of me is glad that I get all of these alerts part of me is all "OMG STFU." (Translation for those not up on Internet shorthand: Oh, for Pete's sake, stop beeping at me. Please and stuff.)
You know what else sucks? Low blood sugars, which I admit I haven't had many of lately, probably because I haven't been eating right or exercising. But when I do have them they are scary, and I always feel like I'm not in control of the situation. Then there's my behavior when I'm going low- it's not always very nice. This is also true of when my blood sugar is high, but I am usually aware enough to know I'm acting like a jerk because I feel like utter crap when I'm high. Lows are a different story. Lows can have me yelling at firemen who are standing around in my bedroom at 4 am trying to make sure I don't die. That's just not very nice.
Could be one or the other. Hell, it could be both.
You know what else sucks? People who like to tell you how to live your life with diabetes when they don't even understand what it is. It's one thing to say, "Hey I read an article about diabetes that said ___. Let me see if I can email you the link." I'm okay with that, because at least you're not acting like you know better than I do. It's another thing entirely to say, "Oh, all you need to do is not eat carbs and it will go away." Or, "You know, eating cinnamon will cure you." Or, my personal favorite, "You shouldn't have eaten so much sugar as a kid. Then you wouldn't be diabetic."
Really, I'd love to hear it. Regale me.
Also on the list of things that suck about living with an illness that never goes away and can make living in the real world with regular people hard...all that stuff. I am going to the endocrinologist four times a year. I have a podiatrist, I make sure I always visit the dentist and I pay extra money at the eye doctor so I can have my retinas scanned every time I go. I meet my insurance deductible within the first couple months of the year. I take longer to get better when I'm sick. If my insertion site for my pump is off, I feel like crap until I can do it again because I'm not getting the insulin I need. Today it took me three jabby needles to get my new CGM sensor in because I kept hitting tissue that was so tough the needles only went in half-way. I have no fingerprints on some fingers because I've been jamming needles into them for over thirty years. I go to bed every night hoping my blood sugar doesn't crash so much that I don't wake up the next morning.
My husband has migraines, and some days his pain is worse than others. And it breaks my heart, because while I am not in pain every day like he is, I understand how easy it is to feel hopeless about dealing with something like this. Your body, your temple, your home, is against you. Think about that. The things you want to do you can't because you're fighting your own body. How can you live with daily headaches that make even the simplest things ten times harder than they should be? How can you live with having to balance everything you eat with self administering hormones and keeping track of how much you exercise so you don't go into a coma all day, every day, for as long as you live? How can you beat the crap the world throws at you when your health bar isn't at 100% when the game starts?
Where's Frodo when you need him?
I don't mean to sound like I'm on the pity train again, because I'm not. I know there are people out there who have it worse than me. There are days, though, that I wonder why do I even bother trying with this? I could eat the same thing at the same time every day, give the same amount of insulin for it, do the same amount of exercise in conjunction, and one day I'll be fine, the next I'll be low, and the third I'll be high. There's no rhyme or reason to this, and there's no pattern to figure out. There's no vacation from it, either. And there are days when all I want to do is cry and scream in frustration, but instead I get up and go to work and smile and try not to show it because I really don't want my life to be about living with diabetes- I just want to live my life.
It has nothing at all to do with living with diabetes, but it has everything to do with being who you are and knowing that you're special exactly the way you are even though it's not always easy, and sometimes that message helps just as much to get through the day. It's been covered by so many people (amazing people like Julie Andrews, Lena Horne and Ray Charles) but my favorite has always been the original....so take it away, Kermit.
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