aiming for grace

green, blue, silver, white and black.

 

Just another Sunday morning taking care of my diabetes. Ah, the detritus. 

to go or not.

 

I just got back from a short business trip to the midwest. Only 2 nights away. 3 hour time difference though, which is always a challenge. Ah yes, traveling continues to pose some particular challenges for my diabetes control. It's as if I step into an airport and until I return, my blood sugars are out of whack, pure and simple. No matter what I try, to carry the right food with me, to stay on west coast time throughout the trip, to switch my pump to east coast time as soon as I land, at the end of the day, nothing ever really works. I'm always high on the plane no matter how much insulin I take, or how little I eat. Meal schedules are off once I get where I'm going so regardless of how vigilant I am about bolusing to cover the food I'm eating "off my schedule", it rarely actually works. And night time always poses a special set of problems because of time and meal changes. Raging highs at "bed time", do I correct or not? When I do, I often crash a few hours later, when I don't, I'm in the 300's and up at night dealing with the thirst or need to pee. Beyond jet lag, there's always a little diabetes fun to add to the fatigue of travel. Ah, it's such a bundle of fun.

And yet, at times, it's still worth it. My trip last week was one of the those times. It wasn't fun physically, but even so, it was a very positive experience. And more importantly, I come away from this particular trip with a new view about travel and trade off. Now when I'm faced with travel, I'm going to think about the potential, the opportunity for a positive experience that will outweigh the inevitable negative physical impact on me. No judgement here, no "woe is me", just put the proposition on a scale and see what comes up. Though it might not always be so hard on me physically, I'm going to assume it will be, just for arguments sake. That way I can really weigh the options. That way I can really enjoy the trips when I do choose to go, in spite of the toll they take in the immediate. That way I can feel good about the times I pass on travel, because at those times, the trade off just wasn't worth it. 

I win both ways. And that totally works for me!

work in progress.

 

Yesterday was a wonderful day full of small adventures and happy times. My husband I stumbled on a mysterious place (to me) in search of a scrap piece of metal for a fence we are building. I had an idea and he knew of a place and it turned out to be a magical discovery for me. Fun was had by all.

Later we went to lunch at a favorite restaurant, ran into some friends there, and had a spontaneous meal with them. So fun! We then came home and puttered about, did some more errands and settled in for the night. We started to think about dinner, looking for something simple and healthy to make. There's a wonderful farmer's market we go to where we get the best soup from a local vendor. We freeze it for nights just like last night, when it's cool and we're in need of a warm, hearty meal. We baked some rolls, made a salad and had the perfect, delicious meal.  

Or so I thought. I'd tested before and calculated my carbs and insulin needs accordingly. But somehow I must have miscalculated with epic proportions. 3 hours later I tested as I always do before bed and much to my utter amazement, I was 360! 360! I couldn't believe my eyes. What the hell? I've just started using a new meter, so I tested again to make sure it was accurate. Same number! I pulled out my old meter to just make totally sure and there it was again, 360. I was shocked. I didn't have any of the usual symptoms I have when I'm this high. No choking thirst, no blurry eyes, no urgent need to pee. What was going on here?

Somehow I'd simply miscalculated the amount of carbs in our delicious meal I guess. Miscalculated in the glow of my lovely day. Miscalculated in the number of carbs in the wonderful soup that doesn't come with a label with carb information. Miscalculated in my self assured, lack of curiosity to take a little time to investigate the contents to make sure I was covering myself accurately. I slipped up, and boy did I fall because of it. Yikes.

I feel really stupid. I know that this stuff happens and I should cut myself some slack. I really do know it. But still I feel so dumb, so spanked, so presumptuous that I could somehow just go with the flow. That I could just float on the glow of a wonderful day and not do what I need to do as a diabetic. I know I'm being hard on my self, but still that's how I feel.

I'm feeling warn out this morning. I went to bed late because I stayed up to make sure that I brought my blood sugar down reasonably rather than in a manic crash. I woke up early because, though I had been careful last night, I was a little low this morning. What's interesting to me is at least I'm finally acknowledging the physical toll a high like this takes on me. I didn't do that much before. But now I see it.

What's more interesting still is that I'm not sure I'm truly seeing the emotional toll it takes too. More accurately put, I see it, but only after a bit. Only after I've kicked myself around a little first. It's only after the initial flush of criticism and disappointment that I see what I'm doing, and though I notice it and work to stop myself, that first shame and recrimination has already taken a little something from me too. I guess the goal is to stop doing this to myself sooner. To eventually not go there at all. Yes, I know that that is the goal. I guess, as always, living with diabetes is a work in progress. 

small adventures, close to home.

 

My friend and I visited this place last weekend. A half an hour away, fields of dahlias, row after row, like a huge striped painting made of flowers. Eye popping beauty on a gorgeous early fall day. It's been warm again, as it often is in the northwest at this time of the year. And with the warmth comes late summer flowers like these, big and small, variegated and solid, simple and frilly. The variety and bawdiness of it all literally took our breath away. It was a wonderful small adventure.

I've been wrestling with the realities of my life with diabetes, wrestling with it for most of the time I've had it. Trading off between what I'd like to do and what happens when I actually do it. I've landed on both sides of the equation, sometimes not caring about the ramifications of that cupcake or extra long walk, and then other times opting to not indulge because the costs are just too great. This ongoing debate is just a part of my life with diabetes.

One of the biggest struggles I've had in the realm of these trade offs has been around travel. It always takes a toll, no matter how careful I am. Always. But I do it nonetheless, usually because I have to for my work. It's do-able of course, and I have a good time in spite of the inevitable blood sugar ride that ensues. But when I do have a choice, I find that I am choosing not to travel when I can. I'm sick of the work it requires and the physical challenges it always poses, the extra highs and lows all take some of the bloom off the travel rose. I've struggled with the desire to see the world more and the particular cost diabetes adds to the process of actually doing so. I've worried that I'm "wimping out", that I'm letting diabetes limit me, that I'm missing out on a full life. And yet, more and more I find that I just want to minimize the discomforts of diabetes as much as I possibly can. I'm tired of the roller coaster, pure and simple. And though I still have it in my day to day life, I have it less so when I stay closer to home. That's just a fact. As much as I'd like it to be different, that's the way it is.

Recently, something occurred to me that's turned out to be very helpful. I realized that travel is just one way to have a full, intriguing, magical, rich life. Plenty of the greatest thinkers and artists that I admire, didn't have to go far afield to experience a meaningful, adventurous life. Close can bring expansion. Near can bring adventure. Small can bring liberation. And in my case, safe can bring joy and energy, balance and happiness. 

Yes, my friends and culture think travel is the end all and be all. The magazines I read celebrate all the exotic corners of the world. The question everyone asks after a week off is "where did you go"? Yes, my friends dream and plan and visit places far and wide. But, it's all relative. It's very personal. And at the end of the day, it's up to me to decide what works best for me with diabetes!

So I'm trying to feel better about all this. I'm trying to look at the rich world just outside my door. Last week I went here and here and here. And later this week, I'm going here and here. Lot's of small adventures, close to home, but as so full of the opportunity to "travel" far and wide.

diabetes marriage.

 

I love my husband very much. Not only is he a terrific person who's company I never cease enjoying, he's also been an amazing partner to me when it comes to my life with diabetes. Supportive, understanding, he's always seemed to strike the perfect balance between actively participating in my care while at the same time respecting the fact that I will ultimately make the decisions about my disease. I feel incredibly lucky to have him in my life. 

Which isn't to say that we don't struggle with the presence of diabetes in our lives at times. At the end of the day, we each are very differently impacted by the disease and not surprisingly those differences can cause friction and misunderstanding.  As in any marriage, there are particular assumptions on the part of each partner about the meaning and responsibility the intimacy of marriage brings. And lot's of trade-offs and bargains and compromises. It's part of what it takes to build a rich life together with our life partners. And in that process, we get to love and support of someone we deeply admire, the joy of companionship and deep intimacy over our lifetime, and the thrill and meaning of a life witnessed and shared. It's all so very worth it. 

And diabetes adds yet another particular layer to marriage and partnership. As the person with the disease, I experience it physically and emotionally. I deal with it's ramifications constantly and I'm tired and frustrated because of it. My husband on the other hand, has to live with the challenge of watching the his wife struggle and deal with something that will never go away. He can help to a point and then is left to observe from the outside, supporting where he can yet unable to ever truly save me from the reality of diabetes. Each of us experience diabetes differently and each of us have to cope with our experiences, sometimes together, but often alone too because of the nature of our particular vantage points to it. We both share diabetes but in such profoundly different ways. Which is reality. And sometimes, it's difficult.

The complexity that diabetes brings to all relationships is unquestionable. That it brings it to our marriages and partnerships poses deeper challenges. The guilt I feel for example, for burdening my husband with my limitations, my fatigue after a night of lows, my frustration with the world after a week of highs. None of that is his fault yet I'd be lying if I said that it doesn't slop over onto him at times. 

Or the guilt he feels when he sets off on his hiking or scuba diving adventures, happy and excited for the fun that lays ahead, but sad too that those very adventures sound like anything but to me. Sad that for me they pose more work and figuring out and planning, and that in the end, it's just more appealing to let him go off with his pals alone. It's not that this doesn't happen with couples without diabetes, but in our case at least, diabetes is the main reason we don't even try anymore. I would imagine too that he looks forward to a vacation from diabetes too, a series of days of eating when the mood takes him, of exercising until he wants to stop, not because he has to. I'm sure that makes him feel a bit guilty too.

Which is just one example of how we get entangled because of diabetes. Guilt or envy, resentment or grief. Diabetes can stir all these negative emotions up, even with the most well-adjusted, realistic and loving of couples. At the end of the day, we've found that talking about these emotions has helped us. And I deeply appreciate the fact that we can talk about them, as well as all the issues that diabetes poses. I feel validated and seen in my own singular journey with chronic illness and I feel good that I can hear and support him in his journey with it too. The talking and listening has turned diabetes into something that's brought us closer together rather than driven us apart. For that I am most grateful to my husband. Because of him and his willingness to stand beside me with my disease, to see it with eyes wide open and feel it with an open heart, we have been able to turn one possible negative of this disease into a real positive. That fact alone means more to me than words can say. Because any gift from diabetes (which takes so much) is amazing in its own right, but this one particularly, this deeper intimacy and partnership with my husband, well this one is the most special one of all. 

"good" morning.

 

This morning I was awakened by a crushing low blood sugar. A slow drift from a dream to awareness, a sudden realization that something was definitely off. As I became a little more conscious I recognized the tell tale sparkles in my vision even with my eyes closed. Then more quickly, I became aware of my head pounding, a headache probably brought on by being low for a while before I was awake. I grabbed for the gummy bears I keep by my bedside, always a quick fix to bring my blood sugars up when needed. I jammed a handful into my mouth and sank back into the warm sheets, still semi-conscious, still disoriented from the low. I lay there and waited for the wooziness to subside, hoping that I would be able to get a little more rest before the morning officially began. But then I noticed the soft light of early dawn slipping through the blinds, telling me that I'd have to get up soon anyway, so I just lay there and waited to feel a little better. Once the immediate symptoms subsided I checked my pump and saw that it was just turning 6:00, close enough to my normal time for getting up. So I did. My head still throbbing, my stomach a bit upset from the sudden blast of sugar. This made me sad today for some reason. I'm not sure why since I've experienced the same thing so many times before. But there you have it. Today was just a little harder somehow. 

backwards, with heels.

 

Success is an interesting concept. At the end of the day it should be a very personal thing, but often it's not. Our culture has very high expectations around what constitutes success. We live in a world which celebrates the doing of everything, at warp speed and preferably all at the same time. Our hero's perform and achieve. The person who can have a family, hold down the big job, manage a fabulous social life, volunteer, write a novel, bake the perfect pie, all while remaining beautiful and persistently youthful in the process is celebrated as the modern ideal of success. More is more, and the having, doing and being the most is best. And anything less than that is well, giving up, not living up to your full potential, in a word, failure.

It's only recently that it's become clear to me how much this idea has overshadowed my life. It's not that I'm a crazy workaholic or hyper overachiever per ce, but rather that the fear of this kind of "failure" (as defined in these narrow cultural terms) has weighed heavily on my heart and mind for decades. Though I have a successful career, a happy marriage, great friends and good health, I still worry that I'm not doing "well enough". I want to live a fully realized life and live up to my potential. I want it and I expect it. To accept anything less would be letting myself down my modern mind tells me.

The idea of letting diabetes factor into this pursuit of the "successful life", let alone fuel any kind of trade off has felt like yet another way to settle for "less". At best diabetes needed to be approached as a distraction that should be "dealt with as quickly as possible" so I could get on with "living fully", as if these were two separate things. Diabetes was to be minimized so as not to "get in the way" of my "real" life. Even the mainstream diabetes party line said I shouldn't let "diabetes hold me back from achieving anything I want". Though true broadly speaking, and certainly coming from the best place, it further fueled the already blazing "high expectation" fire inside me.

I'm reminded of the old adage about women and equality: that Ginger Rogers made every dance move Fred Astaire did, but she did it backwards and in heels. I'm starting to think this describes my life with diabetes. For the longest time I've just focusing on "trying to dance the best dance possible". What I realize now is that in my focus on living to my fullest potential (eg. dancing just as well as Fred Astaire), I've missed the fact that I've been dancing just fine and because of diabetes, doing so "backwards and in heels". In my focus on the modern ideal of not only dancing but trying to do it faster and better, I've missed the fact that living life fully with diabetes is noteworthy unto itself. I need to take into account that diabetes does demand attention and focus for me to remain healthy, that it takes time. And that needs to be factored into the equation of my life, by me, first and foremost. Not as an excuse, not as a reason to give up or settle for less but just seen and acknowledged. Noticing that fact and celebrating it along with seeing the beauty of the dance itself, is becoming MY definition of personal success. A job, a family, friends, volunteer work, the garden, health and yes, diabetes, is successful enough for me!

So let the dance begin!

trade-offs.

 

Trade-offs. 

I think they're the essence of my life with diabetes. I navigate this disease by constantly weighing the trade-off of one choice over another. Very tight control may stave off complications in the future, while in the immediate, it may also limit the quality of my life from day to day. Not paying close attention to diabetes in the beginning may make a person feel unhindered by it, but complications, and all the limitations and danger they bring with them, are almost a guarantee with that approach. Obviously these are the most black and white of comparisons, but you get the idea. What exactly is the right balance, the right trade-off, I ask a hundred times a day? With the big trade-offs, and the little ones too. 

Like should I really have that handful of crispy, hot, freshly made tortilla chips? Is the delight of them now worth the probable higher blood sugar a few hours later? 

Is the desire for a longer walk with my dogs on a warm summer evening worth the risk of a possible low after bed because it's out of my usual routine? 

Should I forgo the idea of vacation because the reality of it is usually so much more work and physical struggle than just staying home?

Sometimes the answer is yes, other times it's no. Neither answer is right or wrong, each makes sense when I make the decision. The point is that life with diabetes is a series of unending trade-offs, a constant negotiation inside my head. Yes, life is like that, with or without diabetes. I get that. But what I also know is that people without diabetes don't have to consider every single thing they do to this degree. All this trade-off thought takes time and energy. It takes my attention away from just living and at the end of the day, it adds a level of poignancy and responsibility to the most mundane of things in my life. And like trade-off itself, that is both good and bad. Good because I'm reminded of the fragility (and consequently, the preciousness) of my life in everything I do, and bad because I'm reminded of the fragility (and consequently, the vulnerability) of my life with diabetes. 

Like I said, life is full of trade-offs.

"when thumbs up is no comfort"

 

Did you see the article, when thumbs up is no comfort by Jan Hoffman in this Sunday's New York Times? What a wonderful essay about how our culture approaches illness and disease (cancer in this case), about how we generally expect people dealing with health issues to buck up and inspire us, among other things. "'Whether you're a celebrity or an ordinary person, it's obligatory, no matter how badly you're feeling about it, to display optimism publicly', said Dr. Barron Lerner." The article goes on to question this cultural norm, articulating the pressure it can put on the person dealing with the disease or chronic illness. "While many patients are inspired by celebrities, others feel guilty for not being as upbeat as the celebrities appear, and angry that the gravity of the disease may be misrepresented. By being constantly reminded that they should keep their chin up, patients implicitly believe that emotional wobbliness will adversely affect their outcome." 

 

I'd go further to say that the pressure and expectation to always "keep one's chin up" can drive a person to denial or the dismissal of the magnitude of the reality of the situation at hand because, hey, at least it's not, insert "worse disease" here. Conversely, a person can come to feel that there's something fundamentally wrong with them because they can't maintain "a happy, brave face" day in and day out. I remember when I was first diagnosed with diabetes that a number of people, both friends and acquaintances, said to me that I should feel lucky because at least I didn't have cancer. On one hand I'm sure that they were trying to "look on the bright side" of what had in fact happened to me but the underlying message was so dismissive and erasing of the experience that I was actually having. I'd just been diagnosed with diabetes, a life threatening, unending, difficult disease that now meant that I'd face struggles both big and small, every single day of the rest of my life. Yes, it wasn't cancer, but still diabetes wasn't exactly a walk in the park either. For years I've struggled with the deeper pressure those comments implied, that I was supposed to feel lucky that I'd only gotten diabetes given all the diseases I could have, and as such, should put on a sunny face and get on with it. 

The truth of the matter is that it's only been through not always being upbeat and cheery about having diabetes that I've actually been able to find some of the inner strength and wisdom to use this experience as fuel to a more joyful, present and authentic life. And that strength and wisdom has only become apparent to me recently, and exists only tentatively even now. The point is that this is a dimensional, emotional and physical process, one fraught with challenges and joys, two steps forward, one step back, taking on many forms and expressions along the way.  For some this is a battle, for others a journey, but for everyone it is at it's core, a personal process and as such, unworthy of one, narrow cultural prescription. Again the article articulates this idea nicely, "'Metaphors don't just describe reality, they create reality", said Dr. Gary Reisfield. "You think you have to fight this war, and people expect you to fight." But many patients must balance arduous, often ineffective therapy with quality-of-life issues. The war metaphor, he said, places them in retreat, or as losing a battle, when, in fact, they may have made peace with their decisions. To describe a patient's process through illness, he prefers the more richly ambiguous metaphor of a journey: its byways, crossroads, u-turns, it's changing destinations; its absence of win, lose or fail."

I couldn't agree more. 

taking that extra hour.

 

Diabetes is a series of discomforts.  At it's best, it's forgotten for chunks of time.  The longer the better.  I've spent my many years with diabetes trying to minimize the discomforts and maximize the times when they recede.  For the longest time, most of my time with diabetes as a matter of fact, I didn't realize this was how I was living, but now I see it.  And though it's sad at it's core, the reality of it has become normal for me.  

Well a funny thing has happened to me lately.  For some reason I've been having these moments of clarity that strip the emotion from the situation and leave in it's place, an insight that I can use in making the reality of my life with diabetes better.  Like the realization about the discomforts of diabetes and the time in between.  Before it was just how I went about my life, sad or angry or tired in the uncomfortable times and blissfully unaware during the times in between.  But now that I see this pattern I realize that there's some very intersting and profound truths about it.  One's that I can use in making things better for my life overall.  Minimize the discomfort, maximize the pleasure.  I'm beginning to see that I can embrace that already existing pattern and actually mindfully pursue it, rather than just exist within it.  What I see is that in seeing the pattern, I have more ability to amplify the process.  I can actally actively minimize the discomfort, maximize the pleasure.

This insight is changing how I'm looking at my life these days.  Before I might have thought this was a selfish way to live but from where I sit with the reality of the inevitable discomforts and struggles diabetes will present, I'm getting more aggressive about seeking the pleasure in my life.  I find that I am asking myself more about what will give me pleasure in this day, this project, this weekend. Of course, I can't avoid all frustrations and struggles that are a part of everyday life but I can have some more say over many of my choices.  And where I can have say, I'm finding that I'm at least stopping for a moment and considering the options in a way I've never done before.  Minimize the discomfort, maximize the pleasure or comfort or fun.

Which translates into lot's of little decisions and many new yesses and no's where before the opposite would happen.  Yes on the 100% cotton sheets, no on that 2nd episode of law and order.  No on reading that horrifying story about something I can do nothing about and yes on that 2nd walk with the dogs.  Little stuff that amplifies the happy times, the soul feeding adventures, the moments of pure joy.  I'm starting to see the day full of choices and though I can never totally get away from the inevitable struggles and physical challenges diabetes presents, I'm finding that this way of looking at my life helps minimize the toll those difficult times take on me.  Overall, I can feel a new gentleness towards myself that lightens the sting of diabetes.  

A friend recently said to me after I'd shared I'd had a bad night with low bloodsugar, why didn't I just sleep an extra an hour.  And she was right.  Why not?  Maximize the pleasure, minimize the discomfort.  

PS. sorry about no photo on this post but typepad has "upgraded" the compose function on their system and for some unknown reason it's not letting me upload images on my G4 ibook, which I use when I'm traveling as I am right now.  Argh!  I'll post the image when I get home in a few days.  Sorry. 

Postscript: I'm home.  Bigger computer, uploaded the photograph.  Enjoy!