Eat It, Just Eat It

Thaaaat's how CF is defeeeeaaattteeeedd. 

Kinda.

Warning, it's a long one. (shock). But it's worth it, I swear  I hope. 

One of the things I struggle with most - in "normal life" and my "CF life" - is paralyzing perfectionism. I have a hard time accepting less than perfect execution of pretty much anything I do; not just public things, but everything (though a fear/awareness of eventual judgement in the case of the public things does ratchet up the pressure a bit more). However, I am also (mostly) rational, and on some level, aware that what I not only *would like* from myself, but actually *expect* of myself is, for all intents and purposes, impossible. Therefore, I plan, and I research, and I ruminate, and I make charts, and "productively stall" to keep from actually beginning my idea, and therefore, put off failing at my idea. 

I have lots of ideas. Therefore, I am an excellent researcher. And planner. And chart-maker and filing-system-creator and notebook-organizer.  

But eventually, even I get frustrated and overwhelmed with all of the notebooks and systems and charts, and want to actually get started, God help me. So I throw myself ONE HUNDRED AND THIRTY SEVEN PERCENT! into whatever the plan (plans?) de jour may be, and they are executed WITH ABSOLUTE PERFECTION!

For approximately ninety-six hours. 

I then huddle in the corner (figureatively speaking - mostly) for at least another forty-eight hours, overcome with shame for my massive failure as a human being in all capacities. Or so my brain says. 

See what a yo-yo of compliance this creates? It's only made worse (for me, at least) by the seeming impossibly high stakes of failure, particularly in regards to my health. I have had just enough experiences of screwing up "just a little" resulting in significant, permanent damage to my health to have this notion of anything short of perfection as failure really strongly reinforced. And a lot of the rhetoric in the online CF community, while intended as motivating and encouraging, only piles on to my anxiety about failing to do everything perfectly all the time leading to a sudden and painful death, that even worse, I will be blamed for bringing on myself.  

Irony of ironies? I get so overwhelmed and scared that I end up doing nothing. Taking lots of naps, swearing to change and take over the world. In an hour. When I wake up refreshed. And eating lots of snacks, because hey! I have CF! Eating, eating is good! Right?

So when I really, truly, seriously, for keeps this time decided to get serious about a long-term "lifestyle change" rather than a metaphorical crash diet of nebs and running and tofu, I did some real research. Not the stall-y, fact-binging, intellectual hoarding kind that has left me well-equipped for Jeopardy! but not so much for actual living, but calm, measured, "what has worked for others? will this work for me?" planning and research. I knew that I had to figure out a way to strike a balance and continue to pursue excellence, but cut myself some slack and take off the pressure of perfection if I had any hope of maintaining this long-term.

Moreover, I had to decide for myself what my health-related priorities would be - not what "the CF community" had embraced as important, not what "society" writ large emphasized, not what my parents recommended, not even just what my doctors said (though their thoughts did have heavier weight than some others).  What health patterns make ME feel better, and what health patterns make me FEEL better? Physically, psychologically - what activities do I most strongly correlate with a feeling of whole-being sustained health? That's where I needed to start.

And for me, that wasn't lacing up my tennis shoes. It was eating.

In my calm research, I ran across Healthy Tipping Point - coincidentally, not long after the author, Caitlin, had injured herself and was unable to run for a while, and was therefore focusing less on EXERCISE IS GREAT! and more on HOW TO NOT FEEL LIKE A COUCH POTATO SLOB WHILE INJURED. One post, "The Emotional Side of Injury", served as a total, light-bulb, "aha" moment. Among other things, she writes:

"Don’t Fall Into the 'All or Nothing Trap':  Actually, I think this is the biggest takeaway lesson about healthy living, period.  You do not have to be all or nothing.  If you cannot exercise, you can still eat well and do all the other things necessary for health.  It is really easy to throw up your hands and say, “Oh, screw it!” and completely fall off the bandwagon for two months.  And honestly, I personally believe that healthy eating is way more important for your general health than exercise (it’s very difficult to “outwork” bad eating habits, as Miranda said on Twitter this morning), so if you can’t exercise for three months, you’re not going to be become a lump.  Look at your injury as an new opportunity to really focus on fueling your body with nutritionally-dense, whole foods, like lots of veggies, fruits, whole grains, etc.   Remember your body needs healthy foods so it can heal your injury quickly."

Beyond the obvious theme of  "Don't Fall Into the 'All or Nothing Trap'", her exaltation of healthy eating as being equally if not more important than exercise, struck such a cord with me. I'm not sidelined from all exercise by an injury, but being so out of shape means that I'm starting reeeeallly slowly, and I don't think I'm getting much real physical benefit from my walks and yoga yet, beyond setting the habits of doing them. Most of all, though, exercise has always been my Achilles heel of CF self-care, mostly because for me, it is the element I can least predict and control. Even when I was at my most consistent a few years ago, I never knew from day to day whether a workout would invigorate and energize me, or leave me wheezing, in pain, and exhausted. I've had hemoptysis in the middle of the street while walk/running, without so much as a kleenex (let alone a phone) to deal with it. So I'm a little apprehensive about exercising to the degree that my lungs (supposedly) benefit most, and even when I overcome my fears and do it, on a practical level, I kind of can't predict how it's going to affect the rest of my day. 

But guess what I can control? What I put in my mouth. And guess what makes a HUGE difference in how I feel almost immediately? Not eating tons of sugar and processed crap. Guess what else? actually eating lots of whole foods that naturally contain the vitamins and nutrients I need, instead of box o' mac with a side of pills to compensate. 

Before I go any further, a HUGE caveat: I am NOT talking to or about people who are doing all they can to pound 10,000 calories temporarily to avoid a feeding tube, or get their weight back up after an exacerbation, or to a certain extent, growing kids. I am also in no way judging people for whom healthy eating is an self-care Achilles heel. We've all been there, when all that matters is getting the most calories possible into every bite, and celery, even with ranch or pimento cheese, ain't gonna cut it. 

However - I am saying that there is simply too much evidence, scientific and anecdotal, to refute that processed crap (or in our case, over-reliance on processed crap) is a net loss for our overall health. Inflammation is such a key issue for so many of us, and this stuff is just gas in the inflammatory tank. I hear you, you need your mac n' cheese. Take the time to make it yourself - I guarantee it will have *at least* as many calories as the powdered-cheese-in-an-envelope kind, is just as easily bulked up ad the boxed stuff, and is made with actual, real food. Enchiladas? Good lord, what a homemade softball. Stir-fry? Right down the center - fat AND salt! Veggies can be dipped in homemade salad dressings, cheese spreads, bean dips, and the like, or can be roasted with a little garlic, rosemary and olive oil requiring little-to-no effort. For major CF points, they too can be really quickly stir-fried with some butter and soy sauce, then dipped in a quick, easy, mayo-based shrimp sauce. 

Just like the exercise fiends say, it's simply about making it a priority and making the time.  Admittedly, I have a penchant for playing around in the kitchen, just like a lot of workout fiends actually used to play and enjoy sports - I can't imagine. But what really makes eating healthfully an ideal starting point for me is that not only is food and nutrition more predictably controllable than exercise, it is literally the most efficient investment you can make in your health - CF or not. Medicines cost money. You have to make time for exercise. But seriously - no matter what, you are going to eat. Since you have to eat anyway, why not go for the option that not only sustains you, but that actually helps and nurtures you? With CF some part of us, if you think about it, is always "injured" to some degree or another. And there are foods, more and more foods every day, that are being demonstrated to actually help our bodies heal themselves. Even Unknown Cystic, king of the McGriddle, wrote a whole post in praise of broccoli. It's just a matter of retraining your palate, just like retraining your muscles - it takes a little adjustment, but it's worth it in the end.

So start small - seriously, do not clean out your pantry, do not go on a raw food cleanse. Have water (or lemonade, it's great for CF kidneys) with dinner instead of soda. Experiment with MAKING your favorite tried-and-true, bulk-up trash food. Swap out a chips/cookies/other out of the bag snack for a sandwich (or fruit and some cheese or peanut butter) instead. And just like training for a 5k (or a mile around the block), keep adding more until you've reached your goal - whether that be a clean eating overhaul, or simply quitting a certain food or foods.

But don't be fooled - trash in, trash out isn't just about um, your fondness of Ke$ha. 

"I Write My Business All Over the Internets, but How the Heck Do YOU Know THAT?" and other adventures in negotiating privacy

I started writing this as a quick comment to the latest post by bloggy maven Cystic Gal, but it got long and personal, for a comment, so I decided to transfer my ruminations over here.

One of the biggest struggles I have with this stupid disease is my often conflicting, confusing, hard-to-read-because-even-I'm-not-sure-most-of-the-time stance on who I want to let in on what's going on with me, health-wise, and how much I want them to know. I am a proud person. Not in the grade-school, my-future's-so-bright-I-gotta-wear-shades, healthy-appreciation-of-my-worth-as-a-person variety, but in the "who? me? problems? BAH!" variety.

In spite of myself, I tend to put far too much effort and energy into keeping everyone around me snowed into thinking, as the kids say, I've got my shit together. I've been this way at least since middle school, and I always assumed everyone just saw right through my act, rolled their eyes, and knew it was all for show. Which is why I would then have the audacity to get upset that my friends and acquaintances didn't telepathically understand what I was going through, or even that I was "going through" anything at all.

What I didn't understand until recently was that most everybody was drinking my kool-aid, to some degree. This is all very elementary social psych, I'm aware, but it didn't functionally click that people are generally going to just believe what you tell them and move on, not take it apart piece-by-piece and try to discern some hidden meaning from an otherwise casual conversation. (Except if you are female and 13, but thank-you-Jesus-thank-you-Jewish-God-thank-you-Oprah, I no longer am. 13, I mean). For example, if you act, live, carry yourself and speak as if you are simply too busy and fulfilled to trifle with such nonsense as finding and developing a meaningful relationship with an interested member the opposite sex, said member(s) will tend to take you at face value, call you "intimidating" or "a strong personality" and leave you alone. Ya know, hypothetically speaking.

When it comes to my health, however, this whole pride issue becomes tenfold. I am, as a general rule, intensely private about my health. There is a small group of family and friends that I am truly honest with, and I really want those people to know, and if I'm honest, I really want it to matter to those people. Other than that, I tend to swing back and forth from feeling that it's some sort of existential duty of mine to share with the world what life is like with CF (as if I could speak for all of us in the first place), spread awareness, yada yada, and intensely craving the normalcy that comes with all but your closest circle simply assuming you have bad allergies or bronchitis, purell-ing, and moving on. I vacillate between wanting everything regarding who-knows-what-when-how on MY terms, because damn it, I'M the sick one here!, and recognizing that CF and my experiences with it create a fair bit of collateral damage as well, and it's unfair of me to deny those around me their experiences of this, and their ways of coping, as well.

Or is it?

At what point do I draw the line between being a good friend/daughter/granddaughter/niece/etc, and allowing people to "experience" my CF in their own way, and standing up and acknowledging that my status as the actual patient doesn't give me license to be cruel and selfish, but it does mean that THEY should be taking how their experiences with MY disease affect, well, ME?

Do I really owe people an explanation as to why I am (sometimes) comfortable spilling my guts, in detail, for (theoretically) all the world to read, but yes, it is STILL overstepping a boundary to forward on to your entire prayer chain/gossip list and extended-families-thrice-removed email updates that were very clearly intended only for those listed in the address bar? Is it really my responsibility to "make amends" with YOU after spending three hours writing the kindest, most understanding email I knew how asking you, for the fourth time (since I've been counting) to please, please please respect me enough to respect the fact that I want to keep certain details private, even if you think I'm crazy for doing so, and get no response aside from months of tension, tension that then spills over into relationships I actually DO care about, because they care about you? At what point do I get to stand on a chair and scream, "Yes! This time, about this, it IS all about me, especially where YOU are concerned!"

Do I really have to apologize for the fact that my personality lends itself toward social hibernation when I feel bad, and so while I really, genuinely appreciate the offer, no, please DON'T visit me in the hospital. Really. Do I have a right to resent the fact that because you are upset and scared, I am then guilted into allowing you to visit anyway, peering at me like a carny act, inspecting me for signs of illness, or improvement, or lacking hygiene or attention to vanity, for details to report in your ever-inconsiderate and violating email chain, when we're really not even that close when I'm healthy?

Do I have a right to be angry that, when I'm supposed to be healing, I'm wracking my brain trying to come up with logical equations and justifications as to why I want the company and attention of certain friends, but neither from certain relatives? And six months later, after I'm better and trying to live in the present and focus on how great life is, right now, for now, because really, it's a matter when not if things will tank again, and I see you, person-who-was-wrongfully-forwarded-too-much-information, what degree of politeness do I owe your obviously genetic voyeurism into the details of my current medical status, and how long am I obligated to indulge you and attempt to gently change the subject before simply walking away in frustration?

And after I do snap, what degree of guilt is appropriate for the way I've just treated you, given that you didn't ASK to be inappropriately forwarded information, and were simply trying to be kind and make conversation in an awkward situation, given that we don't really know each other? Am I allowed to then resent you a little anyway, simply because you know so much about me for someone who knows me so little, and through no fault of your own, represent to me both the constant and specific violation of my privacy, and the greater, more general lack of control I have over even this aspect of my chronic illness?

To what degree of uncertainty and inconsistency am I realistically entitled in this realm? Is it better to be honest and consist ant, but cruel...IE, no, close-on-paper-relative, I don't want you to know anything or visit me, ever, because you've proven you can't be trusted and anything about me is really all about you anyway, but yes, friend-of-11-months, come on over! -

Or is it better, or fairer, or kinder, to be wishy-washy and inconsistent, but trying, trying, always trying to remember that at the very least, people I love love certain other people, and therefore keep trying, trying to negotiate some way to tolerate them, and this, knowing that I will always have my good days and bad days and because of this, will seem unreasonable and unpredictable and inconsistent and unfair?

Truly, I'm not sure which is kinder...I know which would be easier, but the nagging, tugging, uuuggghh I get when I think about actually just whacking through the proverbial bush, clear-cutting anything and anybody that doesn't make me feel good, leads me to believe that can't possibly be the answer. But if I consistently find myself tying myself in knots over the ways I choose to handle my own disease are affecting certain other people, who repeatedly refuse to even engage in conversations on how we can negotiate this and meet halfway, and who ignore my polite requests, curt declarations, and otherwise desperate pleas to consider how their actions affect me, does the sheer fact that they somehow are considered supportive by people who are profoundly supportive to me obligate me to consider them support by proxy and keep trying?

I don't have the answers....OBVIOUSLY. The answers, if there are any will probably continue to change, as I grow and change and as other people change. I'm still trying to define what "normal" and "healthy" and "sick" and "balance" and "work" and "play" are all respectively going to look like, in my life, generally, as a twenty-something in a turbulent, unpredictable world, and specifically, as a twenty-something with a disease that's turbulent and unpredictable in its own right. I'm just doing the best I can, for now, and I think that's really all that can be fairly asked.