Diab-entity Crisis

Sometime in the middle of last week, as I was gazing at my blog banner and mulling over my next post, I had a kind of out-of-body sensation for a moment: Am I still the same person who started this blog nearly two years ago?  Do I still feel the same way about my disease that I did then?  How many years do you have to have diabetes before the “marvel” wears off?  i.e. before you’re officially “burned out,” I wonder?Id_crisis

Really, now: How can I continue to be informative and witty about this @#$! disease when I am so increasingly disgusted with it?

So much of what they told me at diagnosis seemed surreal at the time: you’ll need to count up the nutritional content of every morsel you eat; you’ll need to check your blood XX times a day with this contraption that should never leave your side; you’ll need to inject this substance over and over again, but not too much, or you’ll get the shakes and possibly pass out.  YOU ARE KIDDING ME, RIGHT?!  Meanwhile, my little toe felt numb last week and I was in a frenzy over nueropathy…  Who’s life is this, anyway??

And then came the reader comments from last Thursday’s D-Blog Day post: Cindy echoes my sentiments, saying, “this is not my life… I had a life established that I enjoyed and now someone replaced it with this life that is not mine.”

Suzanne replies, “I remember those feelings just post-diagnosis — ‘This is not my life!’  I felt that my body was a foreign entity for at least 6 months post-diagnosis. I still have days, but I feel like I’m ME again. I think it takes time and a whole lot of support from friends, family, and particularly other type 1s who know what you’re talking about. Hang in there.”

God, it’s good to know I’m not the only one.  I get up every morning and test, fuss about my breakfast carbs, especially if I’m planning to work out.  Then if I don’t go low, I check again a short while later… sometimes take another shot for correction.  By then it’s nearly lunch time and the whole thing starts all over, and so on.  When did my life become all about this @#$! blood sugar disorder? 

Then again, I’m not fishing for sympathy here.  Because on another level, my life is most certainly not all about the diabetes (although you couldn’t tell that from my writings, ay?)  I am a busy working mother of three incredible girls. I volunteer at their school, attend a monthly Book Club and have a magical partnership with the Love of My Life. We travel a fair amount and spend good quality time together both at home and all around the breathtaking SF Bay Area.  So life is good, too.

It’s just that I’m forcibly obsessed with my blood glucose levels.  And they are not cooperating!  And I really and truly cannot remember what I used to think about pre-diagnosis.  I guess we’re all doing as new dLife columnist Karen Hargrave-Nykaza suggests, Learning a New Normal.  It’s called the Diabetes Roller Coaster ride. 

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12 Responses

  1. Sherry lorenz
    Sherry lorenz November 15, 2006 at 7:46 am | | Reply

    As a type 1 for 32 years, I understand completely what you are experiencing: burnout, obsession with BS results, guilt from feeling the way you do because you know it could be so much worse, etc. From my own experience, you can spiral out of control unless you step back and look at the bigger picture. I do this by reminding myself that I am not perfect.

    I know diabetes management is 24/7, but your perfect management does not equal perfect BS. When I first went on the pump 10 years ago, the third day on the pump my BS was 117 all 6 times I tested that day. I thought I finally had the upper hand. Ten years later, I have never had nother “perfect” day. Why? Because I was in a controlled setting with my endo. monitoring everything. Now, enter real life – job, marriage, teenaged daughter, issues, stress, PMS, etc. I have quit telling myself “I did good today” or “I blew it today, so I might as well go ahead and blow it out completely”. Instead, I am just living each day.

    Diabetes is still 24/7 – I’m on the pump, inject Symlin, monitor my BS an average of 6 times/day, watch what I eat and do my 10,000 steps daily. All of that is now routine. But if I overeat, have comfort food one night, am too tired to do another step, only monitor my BS three times, or I’m simply in a @&#%*$ – up mood, I don’t freak out. I go with the ebb and flow and know that I will get my motivation back within a day or two.

    As you know, there are no guarantees – you will gain a lot (even if it’s the rebel in you saying #$@% you to diabetes) by trying to keep perspective and enjoying your life.

    Signed,
    Pumped-up in Tennessee

  2. Bonny C Damocles
    Bonny C Damocles November 15, 2006 at 7:55 am | | Reply

    AmyT,

    I like reading all your stories – all stories about everything, but especially about yourself. I understand them and I learn from all of them.

    I know that you are not complaining, and I also know that you are enjoying life as best you can.

    To me, that’s how life should be. We do the best we can in facing all the challenges that come our way and see what happens next and go from there. We ask ourselves difficult questions which we hope will have easy answers, and we don’t easily allow ourselves to be discouraged or defeated by the unknown. We always know that by being vocal about our feelings, we encourage others to do the same and the usual end result is a community of people helping one another.

    Please keep up the excellent work you are doing.

  3. Jana
    Jana November 15, 2006 at 8:50 am | | Reply

    “And I really and truly cannot remember what I used to think about pre-diagnosis.”

    Me too! I was diagnosed at 19, in the middle of my freshman year at college. When I was home from college the next summer hanging out with a bunch of old high school friends from my gymanstics team and we were talking about some competition we had competed in, the first thing I thought to myself was: “How did I deal with the D during that meet? I don’t remember!” Then I remembered that I *wasn’t* diabetic in high school. Sigh. Diabetes has a way of taking over even the life you had *before* diagnosis…

  4. Keith Rust
    Keith Rust November 15, 2006 at 9:28 am | | Reply

    Being a Type 1 for 23 years, I have had a couple of these “burnout” periods but they are always followed by a renewed sense of energy towards my diabetes management. I remind myself that it will always (barring a cure) be a part of my life and other people have much worse struggles they must deal with. Diabetes is a chronic disease, not terminal, and can be manage to lead a near normal life.

    I highly recommend this book, endorsed by the ADA, for your bookshelf whenever you are feeling burned out..

    http://www.amazon.com/Diabetes-Burnout-What-Cant-Anymore/dp/1580400337

  5. Kerri.
    Kerri. November 15, 2006 at 11:06 am | | Reply

    I remember writing about something similar back in June 2005. The focus comes in waves sometimes.

    http://sixuntilme.blogspot.com/2005/06/true-to-form.html

    You should go back and look at your response. It’s a wild cycle. Sometimes the numbers can drive you plain nutty.

    But you have the right attitude: Life is good, too. :)

  6. AmyT
    AmyT November 15, 2006 at 12:17 pm | | Reply

    Ooh, Kerri, right you are about the frustration coming in “waves.”

    But I still believe what I said back then: “Being mega-busy does wonders for taking the emphasis off SELF and related problems.” Thanks for reminding me!

  7. Scott
    Scott November 15, 2006 at 4:37 pm | | Reply

    I agree with most sentiments already expressed here prior to mine, but especially those from Pumped-up in Tennessee. The bigger picture is that perfect behavior does not necessarily yield perfect numbers. I have taken refuge in a few things:

    First, I advocate that the word “control” is the most inappropriate term ever used in reference to diabetes management. Control implies that the patient has the ability to influence the outcome of all things involved, whereas “management” implies strategy that may change based on ever-changing conditions. Does anyone else agree with me on this?

    I put a fair amount of energy into fundraising, but not indiscriminately. I only raise funds for cure-specific charities, which means the ADA doesn’t get ANYTHING since they are among the least efficient charities anywhere in terms of dollars spent. Its easy to see why, the ADA is an association of doctors who have little, if any, motivation to see us cured because their livilihood’s would be destroyed in the process. Furthermore, I find the general attitude of many in the ADA is one of treating patients with an attitude of condescention, not to mention the fact that the ADA devotes only marginal focus on type 1 diabetes, but likes to claim successes even if they played no role in the discoveries.

    William Polonsky’s book “Diabetes Burnout” should be required reading; it is perhaps the best book on diabetes care. Having hosted online chats with him, I can say that he is truly an asset to the diabetes community for many reasons.

    I also put effort into exposing waste in diabetes research, such as studies to prove the obvious or have no material benefit to the diabetes community. There is work to be done on other fronts, too. For example, according to the Oct. 18, 2006 edition of JAMA, insulin ranks FIRST on the list of all FDA-approved drugs in Adverse Drug Events (ADE’s), with an estimate of 58,819 events requiring hospitalization between 2004-2005 based on the sample studied. We should be asking, then, why the hell is the FDA approving ever more new insulins that cannot be dosed with precision instead of making manufacturers go back to the drawing board and modify their
    “drugs” so they can no longer induce hypoglycemia? It IS possible (SmartInsulin.com is making progress on this), but until regulators stop blaming the patients for these ADEs, we have a system in denial of the true problem.

    Remember that many patients diagnosed long before the DCCT avoided complications, and in fact, the DCCT showed that nothing short of a cure would completely eliminate complications anyway — the most important thing is that we try our best. Several complications, including neuropathy and cardiovascular disease associated with type 1, are now believed to have an autoimmune basis that has no relation to blood glucose levels.

    Anyway, give yourself a break, and do your best. Thats all anyone can expect.

    Regards,
    Scott

  8. vicki
    vicki November 15, 2006 at 9:28 pm | | Reply

    Yes, diabetes has taken over my life – but only part of it. Nine years after diagnosis, I clearly devote a fair amount of energy to managing my BGs but I don’t begrudge that time since I have no diabetes-related complications and maintain an A1C always under 6.2 Knowing the results of poor diabetes management motivates me to keep on top of it.

    Sure, I have a life outside diabetes. I have a fulltime, very interesting job in the healthcare field, one which exposes me daily to the results of poor diabetes management. I’m creative; I quilt, I do art and photography. I go to concerts and the theater, spend time with friends, eat out a lot, exercise and generally enjoy my life. Diabetes is just a part of it. I also spend a fair amount of time counseling newby diabetics.

    I recently received a certificate for a pound box of Sees candy from my boss (even though she knew I was diabetic) and decided to redeem it as a gift for a friend. When I walked in the store I was offered a piece of chocolate which I refused. The counter person apparently thought I didn’t like the kind she offered, so offered another kind. At that point I said, “I don’t eat chocolate, I’m diabetic.” And amazingly, the other customer in the store turned to me and said, “Oh, I was just diagnosed with diabetes too.” (So what was she doing with a sample chocolate in her hand, about to go into her mouth?)

    I asked her if she had a computer. She said yes. So I referred her to my favorite online diabetes resource, David Mendosa’s site (www.mendosa.com)
    I hope she goes there.

    There is so much misinformation about diabetes out there. I agree with Scott; the ADA, as an organization, should be drawn and quartered (if one could do such a thing) for the bad advice they give diabetics. And boo to all the doctors and dietitians who follow the ADA line. High GI carbs are the enemy! So why do they keep on recommending following ADA guidelines??

    Well, I’m about to go off on a rant here, so I’ll just quit.
    Vicki

  9. Jo
    Jo November 16, 2006 at 2:12 am | | Reply

    Being a Type II I can only half relate – but relate none the less. There are days I don’t think about it – that which flipped my life upside down. But you know what? I’m in control – not it. It is being dealt with and “IT” will have to get in line with my life. :)

  10. adam
    adam November 16, 2006 at 8:11 am | | Reply

    I know how you feel, Amy. I rode that damn roller coaster for many years. I got off it a year and a half ago. yeah, I still inject insulin. yeah, I still have to buy the replacement hormone. But my blood sugars are normal now. Google “Bernstein diabetes” for further instructions.

    Take care,
    Adam

  11. Scott K. Johnson
    Scott K. Johnson November 16, 2006 at 8:40 pm | | Reply

    Wow – what a great post, and great comments.

    I was particularly struck by what Scott S. said about insulin being NUMBER ONE on the FDA’s adverse Drug Events list. Amazing.

    Yet insulin is so often just accepted as suitable treatment…

  12. Manny Hernandez
    Manny Hernandez November 17, 2006 at 2:48 pm | | Reply

    I can relate to what you describe. There are days when it is a pain in the rear to have to deal with so much just to make sure you don’t go over… and then, still, you go over at times, without fully understanding exactly what happened. Last few weeks I’ve been under the weather, so imagine the craze, while trying to keep carbs under control and exercising, the values at times jumped and it was frustrating.

    I guess those of us who, like you, are on top of our disease, are going to live the longest and healthiest possible life that we can live as diabetics. I am going to see my endo next week for my follow-up appt. and I can’t wait to find out what my most recent A1C is. I am expecting something in the range of 6.5 or less, based on my values! :)

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