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Imaginary Conversations about the Lemon.

April 21, 2010

Sometimes when I’m trying to figure out something, I have conversations with people in my head. I make up imaginary situations where I am with someone, sometimes with someone I don’t even know, or in a place that doesn’t exist, but I have this conversation as a way to work out what I think about something. Sometimes  I do it to vent about something that is frustrating me, but without actually having to make myself vulnerable to another person or risk embarrassing myself.

Last night, I was frustrated. I was frustrated with my diabetes, after having gone low during an all staff meeting at work. Although I caught it early, thanks to my continuous glucose monitor, and was able to test (72 mg/dl) and treat (regular Coke – blech), later on, after having told someone I had gone low and someone saying something about what if I had passed out, I started to think about what if I had passed out. Of course, I wasn’t going to pass out. I am usually too sensitive to have my blood sugar drop to a range where I think that could ever happen. I wasn’t that low either, and I wasn’t dropping that fast and I didn’t have to walk that far to get something to drink.

But the entire staff was in the conference room, on the other side of the office. And I thought to myself, if I had passed out, how long would it have taken before anyone saw me? Would I have been able to scream before losing consciousness?

And the fact that this thought occurred to me made me very angry. And while I was thinking about this, I ended up having an imaginary monologue with someone I work with. I thought, maybe instead of keeping this in my head, I should blog about it and share it with people.

“I spend every waking moment of every day trying to be normal, and the second I accomplish that it is taken away by the next thing that I do. I do everything I can to be like everyone else, and I go to bed praying that it was enough and that in the morning, I will wake up. Because people have died from this disease. They have died in their sleep from this disease. I know people who have died from diabetes.

People think that you just get sick from diabetes if you don’t take care of yourself. Or that some body parts might not work the way they are supposed to. Or they think that this is something that you do to yourself and that you deserve it. People think that diabetes is just something that happens and if you do this or that then you’ll be fine.

But that’s not how it works.

Diabetes is a disease. Diabetes is just like cancer. You can influence cancer as much as you can, but cancer can still kill you even if you do everything the right way. So can diabetes.

Diabetes has taken so much from me. It has taken away my time. It has taken away my money. It has taken away my ability to think clearly. It has taken away my ability to eat ice cream on a hot, summer afternoon without feeling guilty.

Sometimes I think that because I make it look like I know what I’m doing and because I am active in the diabetes community and because I talk a great story and walk a great walk that somehow no one thinks this could happen to me. That somehow something bad will never happen to me because I’m good. I’m an advocate. I’m an educator. I’m a thought leader, dammit.

Bad things happen to role models all the time.

And it terrifies me.”

  1. April 21, 2010 9:37 AM

    Great post, Allison!

  2. April 21, 2010 9:38 AM

    Oh, Allison. I so understand. It worries me too. And it is so frustrating to work so hard to be normal and to know at the same time that we’ll never BE normal.

  3. April 21, 2010 9:49 AM

    Allison –

    Seem like many people feel same way you do (myself included at times) Sometimes there is nothing that we can do other than do the best we can. Even though Diabetes can sneak up on us and kick us in the ass on occasion, at least we are pro-active enough that most of us seem to do a pretty good job at whethering the storm. Keep up the good fight.


  4. Lesley permalink
    April 21, 2010 10:05 AM

    Such an articulate post! I really enjoyed reading it and feel the same way too. You took the words right out of my mouth. I try to let myself feel bitter and get mad “at my diabetes” about once a month and then I move on, or at least I try to. It’s so challenging and your post really articulated all that I’m feeling. Thanks!

  5. April 21, 2010 10:22 AM

    Thank you thank you thank you for posting this! It’s on days when I’m feeling the most down that the Diabetes Community seems to rally up and surround me with people who are at the same place I am. If you don’t mind, I’d like to post a link to this post on my site. And know you’re not alone in your thinking and feelings – there are millions of us who are just like you 🙂

  6. April 21, 2010 10:34 AM

    Sometimes I feel like Sisyphus had it easy….

    Great post – it really resonated.

  7. Autumn permalink
    April 21, 2010 10:50 AM

    Amen sister!
    Now that I work from home full time, I often wonder if I’d be able to call for help if I really needed it and if I’d have enough smarts/strength to get the front door unlocked so the EMT’s could get in.
    It makes me mad that I even have to consider this scenario. I wish my friends would ask “How are you feeling about your diabetes today?” instead of “How’s your diabetes doing?” because there are days when my blood sugar is awesome yet I feel like crap about living with diabetes.

  8. April 21, 2010 11:33 AM

    I do not have diabetes and I can only appreciate what you are going through because I share your same fears and frustrations for my eight year old daughter. The things you write about now I fear will be the same things that will torment her later and as a parent that truly pains me. I hope she has your wherewithal to be honest, up front and courageous about it. Thank you for writing this.


  9. April 21, 2010 11:36 AM

    Yes. Just yes.

    Sometimes I think 27 years of this doesn’t count for squat. It’s still day 1, every day.

  10. April 21, 2010 11:59 AM

    Great post!! I feel the same way! Its hard when no matter how hard your try it might not be enough. I don’t think that people get that, and I don’t think they understand that I didn’t do this to myself. Thanks for sharing your thoughts, I think a lot of us relate.

    (I also make up conversations in my head, all day long)

  11. April 21, 2010 12:24 PM

    Wow, Allison. Incredibly articulate and well-done. We all probably have these same worries and concerns, and anyone who says they don’t is probably lying or not taking care of themselves. These are all things I think about often and it is depressing and frustrating, to do what we’re “supposed” to do yet sometimes feel as though we’re still sinking in the quicksand. One thing that helps me, personally, is realizing that I do as well as I can with what I have and try to take the right precautions, but know that in the end it’s not up to me to decide my fate. That helps take some of the pressure off, at times. Plus, the DOC is so critical now to my well-being I’m almost ashamed to think how I survived and cared for myself before getting more involved.

  12. Corri permalink
    April 21, 2010 12:56 PM

    I keep writing and deleting this comment because nothing that I say is coming out right. Just know that I’m thinking of you today and hoping that you’ll have a happy day.

  13. April 21, 2010 1:18 PM

    What a wonderfully articulate post – I too am thinking of you today and sending you a big e-hug.

  14. April 21, 2010 2:22 PM

    What an incredibly wonderful post. It’s important for diabetics to read things like this because we all feel this way from time to time. My first reaction upon reading this was anger at your coworker who said something about you passing out. I know they did not mean to be rude or hurtful, but the reality is that you had a bad enough moment in doing the right thing (which was monitoring your blood sugar closely where you knew you were going low and catching it right away) and that person in your office didn’t have to say that and put that thought in your head.

    Maybe next time you could casually say to them, “It’s a good thing you didn’t get hit by a bus coming into work today! What would happen to your family if you were to get hit by a bus?”

    Because saying that to them might make them think terrible thoughts for awhile, so we don’t say things like this. The same should be true about non-diabetics saying needlessly dumb things to us.

    I especially like what you said about doing everything right. People think that when you have diabetes it’s because you have done everything wrong. That you’ve abused your body. They have no idea what it’s like to live with the worry and management. Even if the management is great, the worry is still there.

    All I can say is that I’m glad you are blogging about it. I hope it gets those imaginary conversations out of your head and on to this place where we can tell you all how much we support you. And next time, maybe you should try the “bus” comment in response. Just saying. 🙂

  15. April 21, 2010 3:01 PM

    What can I say – excellent thought, timing, and presentation! You have hit a raw nerve with many of us. Not an easy thing to admit to the DOC and especially to those that do not understand diabetes. This is why we are still part of the human race – we can admit to our weaknesses and still be leaders.


  16. April 21, 2010 3:04 PM

    Thanks for being honest. I don’t really know what else to say (except “ditto” to what Corri said).

  17. in search of balance permalink
    April 21, 2010 4:06 PM

    May I repost a credited quote from this on facebook?

  18. "D" as in "D" permalink
    April 21, 2010 8:18 PM

    Thank you for your candor and for putting into words what we’ve all felt at one time or another.

    I also feel incredibly sad, at times, that this disease has taken so much from me and that I am the only person who really recognizes that. I never bother anybody with my needs and could very possibly die alone because those closest to me don’t recognize what’s happening — because of my own desire to be “normal” and not be needy.

    I had two lows today — in the 50’s — and they’ve put me in a very dour mood, indeed.

    • April 21, 2010 9:16 PM

      I know what you’re saying, and I wonder the same thing sometimes myself. Will I die just because I’m trying to be independent and strong and “normal”?

      But here’s the thing, asking for help or for someone to pay more attention to what diabetes really means doesn’t make you weak. It makes you brave. It’s hard to educate people about a disease that they don’t seem to want to learn about on their own. Know that you aren’t alone, and it IS okay to tell people what you need.

  19. April 21, 2010 9:38 PM

    I completely understand what you’re thinking / feeling. I HAD 2 type 1 aunts in my family. One who took care of herself and did everything “right”. She passed away at 52 years old from the disease. The other was in denial about her diabetes from day 1 and didn’t take care of herself at all. She passed away at 45 years old. What does that mean for me? I try to do everything “right” most of the time (come on… we all have diabetes rebellion days, right?!), but is there a genetic factor to the complications side of diabetes? If so… I’m screwed, but all I can do is live my life the best that I can, and take everything as it comes.

    Thanks for the great post. It really sums up the thought struggles I have had since my Aunt Judy passed away at 52 in January of 2004.

  20. April 21, 2010 10:13 PM

    i so agree. My family just doesn’t get what my kid and I have to do day to day. One interesting new thing. We were approved for a CGMS and my non-D daughter say we should name it Carl. OK. So now, when I get home from work I ask “how’s Carl”. my daughter calls me at work to rant that Carl is being wild and not in sync. It has relieved our relationship to the disease in an unexpected way. But, now we find out my ex-husband has been ignoring claims denials and we may lose Carl. If she has to go back to 12-14 finger pokes a day (which she cut to 4-6 in adolesence rebellion) and worse control…. uggggh. her a1c went down 1 point in 1 quarter with the cgms.

  21. Colleen permalink
    April 22, 2010 9:14 AM

    Wow, Allison. Thanks for posting this! You put it so well, I really felt this as I read it. There’s a lot of scary things that can happen with this disease, even if you do everything “right.” And, in the simplest terms, it sucks.

  22. Rae permalink
    April 23, 2010 8:13 AM

    Only one word describes this post, awesome. I’ve been reading your blogs for some time, but haven’t commented before. I enjoy all of your blogs, but this one was perfectly timed and presented. Recently I heard that a 13 year boy that I knew passed away due to diabetes. This just crushed me. I wondered why Jesse and not me? It reminded me that though I am young and in college, I am not invinvible. It is a struggle to balance being a “normal college kid” and taking care of my diabetes. The past few nights I’ve been having a lot of lows. I wonder what if I hadn’t tested when I did, what if I had taken a correction, or what if I hadn’t woken up? Last night I was up 2.5 hours later than I wanted because I was trying to get my bg up to a decent level, but it wasn’t cooperating. I try not to dwell on the bad things that might happen, but it isn’t always easy.

  23. April 23, 2010 3:42 PM

    So true and heartfelt. What you were describing in the first part of your post is what is referred to as self-talking, which is actually, a natural compulsion for all of us that works as a natural de-stressor. And when you are bothered by troubles like diabetes doing self-talk or venting your frustration by blogging about it helps greatly. Diabetes is one hell of an illness indeed, and although I have some friends who still keep on thriving despite having it, I know for a fact that despite all the control they are mustering, it does not come easy. Keep up with the fight!

  24. April 25, 2010 9:02 PM

    Great post. It is scary, isn’t it?


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