Saturday, September 18, 2010

Invisible Illness

I saw this meme going around last year and never did it. It's a little unique and pays homage to the fact that it is National Invisible Chronic Illness Awareness Week. Mouthful, huh?

Invisible Illness Week is just about raising awareness for chronic illnesses that aren't outwardly apparent and creating a community of folks who "get it." Sounds like a good thing to me! As a diabetic, I look normal and (most of the time) I am normal. But, really, I'm not like everybody else. As a general rule, I like having control over who knows about my diabetes and what they know. But that doesn't mean that there aren't disadvantages to having a disease that no one can see.

I don't do meme's often but I think this one is interesting and asks questions that I either don't get asked often or that I have never even thought of the answer to. Enjoy!

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Type 1 diabetes. Or juvenile diabetes. Or "the 'betes." Whichever you prefer.

2. I was diagnosed with it in the year: 1991.

3. But I had symptoms since: I don't remember really well, but I want to say that I only had symptoms for a couple of months before I was diagnosed.

4. The biggest adjustment I’ve had to make is: everything! Diabetes affects every single aspect of your life. I was diagnosed when I was 8 years old so I don't remember much about NOT being diabetic. (Still not sure if that's a blessing or a curse.) But interestingly enough I definitely remember all the education I was given and how my family life changed. We started to have to weigh food, count food exchanges (can you say old-school?), learn to give shots, use glucometers, and develop a whole new routine. It was definitely a huge adjustment, not just for me, but for my whole family too.

5. Most people assume: That all diabetes is the same. It's NOT!! Type 1 and Type 2 are so different! Look it up!

6. The hardest part about mornings are: that I have to PEE like a maniac!! But that usually has more to do with the little one I'm hosting than my diabetes. :-)

7. My favorite medical TV show is: Bones. Is that medical? Or just gory? Either way, great show.

8. A gadget I couldn’t live without is: my insulin pump? That's not really true because I really don't mind the old-fashioned injections. My blood sugar meter? Sure, I love being able to test and within 5 seconds have my blood sugars. But if I'm really being honest about what gadget I couldn't live without, it would have to be my DVR. ;-)

9. The hardest part about nights are: making sure that my blood sugar is just right before I go to sleep. I hate the idea that I could be heading up or down and not know it right as I'm going to bed. Because that's several hours of unmonitored blood sugars taking a toll on my baby and my body. But it's just so difficult to make sure you are hitting blood sugar nirvana right before you hit the sack.

10. Each day I take __ pills & vitamins. Right now I'm only taking prenatal vitamins (1 pill). But I have a feeling that's not what this question is driving at. As far as medications and care routines, I take insulin all day by using an insulin pump. I test my blood sugar 10-12 times a day and count carbohydrates to determine how much insulin to take.

11. Regarding alternative treatments I: don't believe that they are practical for diabetics. Sure, eating right and exercise are great for everyone and will certainly improve your health and diabetes control. However, there is (currently) no cure for my diabetes and there is nothing I can do to stop taking insulin. No charms, no extracts or vitamins, and no snake oil.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. Having a disease sucks any way you slice it but I suppose there are advantages to being able to control who knows what, when they know it and how much they know. (By the way, I don't really like the term "illness." It makes it sound like I'm sick and since I'm taking care of myself, I'm actually pretty healthy. I'll stick to "disease" if I have to call it anything.)

13. Regarding working and career: I don't really feel like my diabetes affects my work. I have a very demanding career and schedule but I think that I do as well with it as anyone else. Sure, there are times when I need to excuse myself to test or correct a low or high. But I really feel like someone with diabetes can do anything.

14. People would be surprised to know: that unlike most diabetics, I'm not a big fan of the CGM (continuous glucose monitor). As far as I'm concerned, they are uncomfortable, cumbersome, inaccurate and overall just a royal PITA.

15. The hardest thing to accept about my new reality has been: that it doesn't feel new. It feels like something I've had forever and probably will continue to have forever. And forever can seem like a long time when you know that diabetes will be with you the whole way. Especially when some days I just want a break! But it sure beats the alternative. . . .

16. Something I never thought I could do with my illness that I did was: nothing, really. I know a lot of people diagnosed around the time I was grew up scared and always aware of their limits but I remember the people around me always telling me that I could do anything anyone else could do as long as I took care of myself. The scariest thing for me was always what could happen if I didn't control my blood sugars. In nursing school, I saw plenty examples of what uncontrolled diabetes could do to a body after decades. That's enough motivation to keep me on track! And being in good control makes me feel empowered, it makes me feel like I am the one controlling the disease and not the other way around.

17. The commercials about my illness: have nothing to do with me. They are usually targeting Type 2 diabetics. Plus, they make the stuff I go through every day seem like this huge deal. I remember when meters came out that used way less blood and all the commercials talked about was how you could avoid "painful finger-pricks" and test using your arm instead. Well, having had diabetes for 15 years at that point, I was pretty used to the finger-pricks and the idea of my being scared of them or "relieved" that I could use my arm instead seemed a little ridiculous.

18. Something I really miss doing since I was diagnosed is: who knows? I can't even really remember not having diabetes. But I do remember about a year after I was diagnosed getting my first case of diabetes burnout. So I know that at some point I could remember a time in my life when diabetes wasn't clouding the picture and that it must have been a pretty sweet gig.

19. It was really hard to have to give up: my freedom. Sure, I can technically do whatever I want, but it sucks knowing that most things could be 1000x easier if I wasn't dragging this disease around with me. For example, trying on new clothes without having to wrangle a pump, eating Halloween candy without having to bust out a calculator and at the same time juggling my guilt, doing any kind of exercise without having to SWAG my basal rates into something that might keep me from going low, and traveling without having to pack a separate bag with back-up supplies (and back-ups for my back-ups) and then having to go through stupid airport security without my metal pancreas setting off any alarms. . . ya know, just to give a few examples!

20. A new hobby I have taken up since my diagnosis is: Well, I've had it almost my whole life (or at least the part I can remember) so I've picked up and dropped several hobbies over the years but that was mostly a function of growing up rather than having diabetes. But the one that stuck and was primarily related to diabetes is blogging!

21. If I could have one day of feeling normal again I would: eat whatever the hell I wanted (carbs be damned!) and not have to do the math in my head!!

22. My illness has taught me: that I am stronger and tougher than I ever thought I could be. . . and even on the days when I feel defeated I'm still probably tougher than most.

23. Want to know a secret? One thing people say that gets under my skin is: Just one thing? Here's a list of the most annoying things that the diabetes police come up with:
  • "Are you allowed to eat that?"
  • "My friend/co-worker/uncle/cousin had diabetes and lost an arm/died/didn't take care of themselves/went blind, etc."
  • "If you are on a pump, your diabetes must be really bad."
  • "Are you low?" or "Test your blood sugar!" (said by a friend/family member/::cough:: husband if I'm acting funny or even in a bad mood . . . which, by the way, I'm allowed to be without actually having an off blood sugar!)
  • "I don't know how you do that. I hate needles. I could never give myself a shot!"
  • "Aah! I hate needles/blood!" (said by someone nearby when I'm about to test my blood sugar or give myself a shot. Guess what? My syringes and I aren't exactly friends but I have to do this to live so, if you don't like it, pipe down and don't look!)
24. But I love it when people: ask me questions! And not just ask me questions but act like they believe me and are actually interested in learning something. So many people look at you like you're looney-tunes if you say that you can eat whatever you want as long as you count carbs and bolus. The media has hyped diabetes up to be this one-dimensional disease that when you try to tell people the truths and intricacies about it, so many continue to think they know more than you.

25. My favorite motto, scripture, quote that gets me through tough times is: I don't really have one. I use the DOC, my family, my friends and my husband to help me get through the tough stuff. I will say that knowing what a big difference my tight control has made (no complications, a healthy pregnancy thus far, etc) also helps me get through the tough days knowing that I'm just taking one more step toward a long, healthy, happy life.

26. When someone is diagnosed I’d like to tell them: that despite everything that you are taught there will be days when you do everything right and your blood sugars still don't behave. You will get mad (and if I'm honest, I believe you have a right to) but try to remember that it doesn't mean you failed, it just means diabetes sucks! (And I'd like to have someone remind me of this every now and then, too!)

27. Something that has surprised me about living with an illness is: that most days it doesn't really feel like I'm "living with an illness." It just feels like life.

28. The nicest thing someone did for me when I wasn’t feeling well was: take absolute and total care of me. When I was little, I remember my grandmother and grandfather taking care of me on days when I couldn't go to school. They held my hair while I barfed, let me sleep but woke me up when it was time to test my sugar again, tried to get me to eat something, stroked my hair as I laid my head on their laps, shared vigils with my mom in my hospital room so I would never be alone. And now, my husband is completely awesome when I don't feel well. From being an occasional gofer and grabbing my supplies, to drawing up the occasional injection, to looking up the carbs for me, he seems more than happy to help me carry this load.

29. I’m involved with Invisible Illness Week because: I have diabetes? And I'm too lazy to write a "real" post? Not sure what you're looking for here.

30. The fact that you read this list makes me feel: like maybe you will take the time to re-post this meme with your own answers!

2 comments:

  1. I love this!! I've been a type 1 diabetic for 15 years (since I was 7) & I completely agree with all your answers!! It's true everyone relates type 1 to type 2 thinking they're basically the same & they're NOT!!!

    It's just so nice to see & hear from someone who knows exactly how I feel. :)

    ReplyDelete
  2. Hi! I have an award for you if you're interested:

    http://www.livinglikethekings.com/2010/09/one-lovely-blog-award.html

    ReplyDelete