Tuesday, August 23, 2011

It's Diaversary Time...

Today marks a very important day for me: it's been a year since I was diagnosed with diabetes.  In a way, I can't believe it's been a whole year; on the other hand, it seems like it's been forever already.  It blows my mind that there are people who have been living with this disease for 50 years or more, and I definitely, definitely hope that I'll be one of those people 50 years from now.

I saw something on Facebook the other day that a friend had posted that said:
It's hard to explain to someone who has no clue. It's a daily struggle being in pain or feeling sick on the inside while you look fine on the outside. Please put this as your status for at least 1 hour if you or someone you know has an invisible illness (COPD, Anxiety, Bipolar, Depression, Diabetes, Lupus, Fibromyalgia, Crohn's, MS, Arthritis, Cancer, Heart Disease, etc.) Never judge what you don't understand...
It's so true.  Those of us with diabetes have to deal with the (largely invisible) battle of highs and lows, and I have countless relatives & friends who live with other illnesses that few people can truly relate to.  Living with a chronic disease is tough-physically, mentally, and emotionally.  Even if it's not something that you have to deal with on a minute-by-minute or hourly basis (although that can certainly be the case with diabetes), it's always something that is in the back of your mind.  It adds an entirely new dimension to your life, and puts everything in a different perspective.  Once you are diagnosed with a lifelong disease, everything else pales in comparison.  Things that used to matter just don't anymore.  Relationships take on a new meaning, and you learn how to depend more fully on other people-and yourself.  "You never know how strong you are until being strong is the only choice you have."  Like I said in my six-month post, though, sometimes I don't want to be strong...I'd rather just be normal!

That's not to say that you can find that new found inner strength every day, though...there are plenty of days when the challenges of living with a chronic disease weigh so heavily on you that's it's just too hard-and sometimes impossible-to keep a positive attitude.  There are days when you just don't want to do it anymore, when you're sick of having the stare-downs with your plate trying to count carbs, dealing with insulin dosages, the highs and lows, and constantly checking your blood sugar, that you fantasize about what it would be like to have a working pancreas.  I've been through a lot of those days, and luckily I have a husband who is very supportive-but who also reminds me of reality when I need to hear it.  No matter how much I want to have a working pancreas, I don't...so I just have to deal with it.

It seems like a lot of what I've learned about diabetes revolves around "dealing with it."  How to deal with out-of-range numbers, diet modifications, basal/bolus rate changes on an insulin pump, taking care of your overall health...and with all that to think about, "dealing with it" can easily become overwhelming.  It is doable, though--something that those people who have lived through 50 years of slowly-improving diabetes technology are a true testament to.  One thing I've always been thankful for is that I was diagnosed at a time when there is so much technology available to make living with this disease a little easier.  I started out with just a blood glucose meter, then added oral medication, switched to the insulin pen, and now have a meter that communicates wirelessly with my insulin pump, which also doubles as a Continuous Glucose Monitor (CGM) when I wear the sensor with it.  That's not to say that today's technology is perfect, though--there are plenty of improvements that could be made in order to fine-tune what is available.  There are always news stories about the latest & greatest in diabetes technology, and rumors about what is to come.  I think the closed-loop pump/CGM system probably isn't far away from being a reality, but that's still a far cry from a working pancreas.

Another thing I've realized in the past year is just how misinformed people are about diabetes in general, and about type 1 especially.  I wrote a post in January about an exchange I had with a woman on another blog site about diabetes and it "going away", and it just showed me how little people know about the disease and yet are so willing to give "advice" and impress their "knowledge" upon you.  I even had a lady tell me once that weight loss surgery "cured" diabetes...Being of normal weight, I was thinking, Lady, if I had weight loss surgery I'd be nonexistent!  But some people just don't "get it," and some aren't even worth the trouble of trying to explain everything to.  I try to be patient and educate everyone I can, but some people just aren't worth the effort it takes because they are so set in their old-fashioned way of thinking.

Some people that definitely do "get it," though, are the members of the DOC-the Diabetes Online Community.  Without their stories, advice, and support-from-afar, I wouldn't have made it through this year as easily as I did.  Even though they may be miles away, knowing that there is someone out there who has gone through exactly what you're dealing with makes it a little easier to cope with.  One of the major things I worried about when I was diagnosed was my ability to have a healthy pregnancy and baby, and the DOC provided tons of answers and encouragement on the subject.  Thanks to them, I realized it was definitely possible to have a relatively normal pregnancy and happy, healthy baby in the end as long as you're willing to put in the effort it takes to effectively manage your disease before and during pregnancy.  It isn't easy, but it's doable-and so worth it.

Another thing I've learned from this disease is that sometimes, you just have to go with the flow.  There are going to be good days and not-so-great ones, and I finally learned that you just have to accept that.  Highs are part of the disease, so you just have to expect them, correct them, and move on.  It was incredibly hard for me in the beginning to see those numbers as information and not a "grade," but I've grown into a more balanced view of them over time.  It's still hard, though, especially when you know there's a tiny little human being inside you that is depending on your health to stay healthy...The highs are more emotionally tough than anything then. 

When you're diagnosed with a chronic disease of any kind, I really think you go through the typical stages of grief (Denial, Anger, Bargaining, Depression, and Acceptance) over the loss of your former, healthy self, though it's not to say that you don't drift back and forth between stages at any given point in time.  Depending on the day, you may want to deny that you have to give your disease any attention at all, or you may be mad at the universe because you're one of the unlucky ones who ended up with it.  You may tell yourself (or God) that you would trade XYZ to be able to go back to your normal, healthy self, and other days you're just down in the dumps just because dealing with everything becomes so difficult to handle.  Then, on the good days, usually when you have a handle on things and are feeling confident in yourself and your life, you accept your disease as a part of who you are, though never as a definition of yourself.

It's incredibly hard to not let a chronic illness take over your life.  Achieving a balance between managing and not is tough.  You have to have just enough control over it so that it doesn't control you, but not so much that it's all your life revolves around.  It's not an easy thing, especially when your disease places so many limitations on what you can and can't do.  I wrote not long ago about how diabetes disrupts my life, because as much as I try not to let it prevent me from doing anything, realistically, it sometimes does.  Anything that involves water is pretty much out of the question for the time being, because although I could switch back to shots for a day at the water park, I just don't want to risk the loss of control during a time when control is essential.  It puts a damper on our plans with friends, and even my vacation plans with my husband, because being on a (non-waterproof) insulin pump prevents me from doing a lot of things, and pregnancy limits me further.  It's just the way it has to be, but that doesn't mean it doesn't majorly suck.  I hate that my disease prevents my husband from being able to the things he wants to do, and I resent the fact that we're not able to participate in a lot of the things our friends plan because of it.  Even though being on the pump means giving up some of my freedom, though, I still wouldn't trade it for shots simply due to the level of control it gives me.

So, if there's one thing I've learned over the past year, it's this:  Life with diabetes, like any other chronic disease, isn't always easy...but it's manageable.  There are things that just plain suck, but as long as you're dealing with them in a way that allows you to control your disease without it controlling your life, that's a win in my eyes.  You're never going to have perfect numbers, and there are certain modifications that you have to make to your life in order to take care of your overall health, but once you have things (sort of) under control, your life becomes more normal(ish).  This disease might sometimes limit the things you can do or eat, but it never has to prevent you from accomplishing the things you want to do in life.  And in order to manage everything in the most effective way possible, you have to find a source of motivation to keep you going-especially on those days you want to quit.  Diabetes doesn't take a vacation, so you can't either...but as long as you have something to keep you motivated to stay healthy (mine is my future children), everything you do and all the effort you put in has a greater purpose.  That motivation is what makes all the pain and suffering worth it...it's what makes life worth living.


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