My 2017 New Year’s Resolutions to Better Manage My Chronic Condition

Like countless millions of others, I, too, participate in that annual rite known as New Year’s Resolutions.  As someone grappling with fibromyalgia, a chronic condition involving chemical and hormonal changes that result in ongoing pain, digestive issues, cognitive impairments, weaker immunity, poor sleeping, low energy, and so on, as well as not getting a definitive diagnosis until late this year, I had a mixed bag of results in 2016. But I fervently believe the diagnosis drives home the need to have resolutions for 2017, and to set them appropriately.

 

As we observe the end of one moment, the start of another awaits. 

I’ve found it helpful to compose less dramatic resolutions and instead use the declarations as a way to state my priorities and direction for the year. More recently, I’ve also begun shaping them to allow for different versions and degrees of success. In thinking about the upcoming year and factoring in the impacts of fibromyalgia, I believe I see several general areas around which to craft my personal 2017 goals: health, relationships, creativity, growth, and figurative or literal “housecleaning”.

I know up front that this year won't allow
for an off-the-grid family backpacking trip...

For me, health and my fibromyalgia diagnosis are completely intertwined right now. But I have to acknowledge the improbability of going from notably impaired daily functioning to returning to arduous backpacking excursions off the grid, or multi-day mountain biking road trips. I think the reality of the condition and treatments, and the newness of my diagnosis, require that my focus is on an improved understanding of how to manage my condition. By breaking it down into refining my nutritional regimen started in 2016, building on the limited exercising I could muster late in the year, and experimenting with other supports such as massage, meditation, and so on, I should be able to slog through the daily grind and end the year with improved health and better knowledge of how to manage it. This goal meets my criteria of layers of success and flexibility, and underscores that the year is just truly about effort and learning.

... But we can convert it into a goal
of finding new ways to connect.

Fibromyalgia affected not just me but those around me for nearly the past three years. As such, I think a second general goal revolves around learning my physical limits for the current ways I bond with friends and family. It also seeks new ways to connect with loved ones. Again, this will require experimenting. But the only way to discover new limits is to try and then assess; the only way to develop new avenues for creating shared memories is to risk a bad time in order to revel in a good experience. Whether we attempt some grand international vacation or merely check out a museum we’ve never visited is irrelevant. The priority is on partnering with those close to me to see how we can continue sharing our lives.

Regularly playing this beautifully-restored guitar
is  one of my goals for 2017. 

I long ago learned I need creative outlets for my emotional well-being, and I chafe without those releases. The previous iteration of my life was wonderfully integrated. But, my now-chronic condition led everything to unravel and left me rudderless. This past year’s creative goal emphasized trying new creative expressions on for size. For this upcoming year, I can build upon that effort and see goals that my condition no longer disrupts. All of the experiments I’m conducting create some fertile ground to return to writing; the prior photography I’d toyed with helped me begin to see what is in front of me in a new way, and building a more diverse library of photographs to accompany my writing seems to be an easy and fulfilling add-on; resuming guitar playing after years of near-dormancy caused some elbow pain this year, but I learned ways to mitigate it. So, continuing to rediscover my love of music through some focused efforts will allow me to have a collection of creative outlets that cover the spectrum: written, visual, and auditory. In that sense, I don’t care if one of them dead-ends, just that I give each an earnest shot. If so, I believe I’ll end the year with something to show for the effort and to build upon.

A goal that dovetails with my prior ones is to push myself to evolve: to return to some of my prior activities in a way acknowledging my new limitations, and to see if such versions of those activities are fulfilling. In addition, I want to force myself to participate in completely new adventures that from the beginning appear likely to work within my constraints. Much of my reading on fibromyalgia has seemed to present a push-pull conflict between returning to your old self so that the condition doesn’t “win” and finding new ways to live positively so that you aren’t bound by your condition. I see my focus this year as going down both avenues so that neither artificially precludes the other’s chances for fulfillment. The reality is that we’re all always morphing, and the real point of this goal is spending this year seeding my life with varied opportunities, in the hopes that I yield some sort of benefit this year and position myself for better harvests in future years.

Chipping away at projects should help avoid
adding myself to the list of things needing repair.

Lastly, I have my tedious but necessary goal around “housecleaning”. No one loves updating wills, working with financial planners, mucking out gutters, cleaning out the attic, and the like. As I learned this past year, pushing hard and ignoring my body’s warning signs can lead to physically painful setbacks. Yet, these tasks are necessary evils for keeping affairs in order and avoiding more stressful alternatives that might otherwise arise. Therefore, laying out my priorities at the beginning of the year allows me to chip away at a necessary but boring goal and to avoid distractions or disregard.

I think the combination of physical and emotional well-being, staying connected with those around me, growing as a person, and tending to some loose ends constitutes a well-rounded, achievable set of goals for the new year. It addresses ways in which I experienced setbacks in preceding years due to my condition. It builds upon efforts or learnings from my current goals, now winding down. These days, I’m often easily frustrated or despairing, and sometimes pessimistic about my future. But this goal-setting is also a self-managing way to see positive outcomes. In their details, each goal also allows for degrees of success, since all-or-nothing outcomes are needlessly punitive and would only reinforce the frustrations I’m battling to overcome.  I’ll commit these goals to paper – or at least a virtual document on a laptop – and update them at least monthly. Doing so helps maintain my focus and positive outlook. It will also help me acknowledge small successes along the way.

Like everyone else, I want to live vibrantly, with great moments transitioning into wonderful memories shared with those whom I love very much. Also like everyone else, I’ve experienced the curve balls that life eventually throws at us all, each with our unique versions. So, for me, New Year’s resolutions are not about unrealistic aspirations or about lamenting what might have been. Rather, they’re about trying to attain the potential that my life offers, make some impact to the world I live in, and do my best to enjoy the ride.

For now, though, one step at a time.

Jay Bell

How Fibromyalgia Affected My New Year’s Goals

A year ago, I joined countless people in the annual rite of declaring my new year’s resolutions. However, unlike a lot of people, I had to do so in my characteristically overly-analytical way: I wrote them down, refined them, ensured they were clear and achievable, and then identified sub-goals feeding into them that were equally explicit and realistic. As a package of “resolutions”, I then validated that they were sufficiently comprehensive. Having finished that nerdy bout of planning, I committed to tracking progress over the year.  As I now watch 2016 finish its wind-down and begin thinking about 2017, it strikes me as important to review and reflect upon a tumultuous twelve months.

My goals were varied but comprehensive. In the past, I’ve thrived seeking out physically demanding adventures that create lasting memories with friends and family, which in turn scratched my creative itch by blogging about those events. At the start of the year, I believed I was enduring a series of injuries from those adventures that disrupted my whole cycle of fulfillment. As such, I sought to pursue healing. The “injuries” and my accumulating years left me wanting to get my figurative and literal house more in order. I also aspired to experiment with finding replacement creative outlets, and to seek alternate ways to bond with those around me until we were again backpacking off the grid or mountain biking all day in some other state. On the surface, my aspirations for 2016 ended with a combination of failures and mild successes. But, geek that I am, I updated that document religiously, and it now allows me to see my results as more nuanced, and as a result I choose to see a lot of successes.

The struggle to heal my injuries led to doctors who gave up on me, myopic specialists who wouldn’t look at me as a whole person or listen to me, an inability to return to my old self, and extreme frustration. But, it also led to finding a doctor who does listen, who kept working through possible diagnoses, and who established a diagnosis of fibromyalgia. As a chronic condition that is essentially established by ruling everything else out, that was not an easy feat. In actuality, it was the end result of well over two years of physical problems. This diagnosis will mean a lifetime of pain and impacts to digestion, cognition, immunology, sleep, and energy, so it’s not a pleasant end result. But my perseverance allows me to now know what I’m working with. This is no small comfort, and is a contrast to a point a little over a year ago at which I was struggling and looked despairingly at my partner, Sara, pleading futilely for her to tell me what was wrong with me.

My new eating habits led to losing more weight than intended!

The unrelated efforts to shed weight I’d accumulated from not exercising – but eating as if I still were – led me to an end result of a nutrition plan that turns out to be great for people enduring fibromyalgia. That has led me to take all of the desired weight off, along with another ten pounds to boot. This has since become packaged with a nutritional supplement regimen. An added benefit has been that as long as I stay on plan, I have no further digestive issues. Prior to fibromyalgia, I’d been someone who could practically eat gravel and wash it down with motor oil, with no ill effects. So, for all the negative aspects of this diagnosis, I’ve found one area where I can feel as if I returned to normal.

House projects never seem to go smoothly.
But, these days I really need to pace myself.

When it came to getting my figurative and literal house more in order, I can see a series of tasks that went undone. I can see rooms or a yard not as pretty as they should be. I can see paperwork that a lawyer never drew up. Instead, I choose to see someone who was dealing with a lot of challenges on a daily basis, yet still managed to chip away at everything. There are dangerous trees now removed, garage doors that work, shrubs that were transplanted, rooms that were painted, and finances put into the hands of a professional to help provide security for me and my family. Even though I didn’t finish all I sought to do, I had to persevere, such as squeezing in appointments amidst medical visits. I had to fight off the fatigue and allow for several days to complete paperwork I might have previously banged out in one late night. I had to learn to pace myself, such as after I literally almost collapsed from pushing myself painting all day without breaks. Previously, I would have expected to accomplish twice as much in half the time. But this year, the work I was able to complete took far more effort, planning, and perseverance. That hard work has already produced some results, helped me learn more about how I need to now manage myself, and provides a springboard for my 2017 focus.

Lastly, my adventures and bonding had nowhere near the volume and results I’d sought. I was never hurtling through the woods on a mountain bike, whooping excitedly alongside Sara. I never summited another mountain with my daughters. I never sat in a kayak, listening to the water lapping again it or the shore.  Lacking those adventures, I lost my creative outlet as well. But the limitations that fibromyalgia foisted upon me left me desperate to find some way to search for some sort of alternatives to still have new experiences with loved ones, as it also left me chafing at the lack of a creative outlet.

My girls rode and drove ATV's for the first
time, loving the adventures with family!

In order to not waste the year, experiments led me to help set up a wonderful family reunion filled with horses, ATVs, jamming on a porch with family members, daughters meeting far-away cousins, and countless laughs. I spent time at the beach instead of the woods, and my off-road beach permit allowed my girls an opportunity to host birthday weekends on Cape Cod that they could brag about. My family saw a wonderful play from the second row of an antique playhouse. I welcomed the holiday season with over a dozen good friends on Martha’s Vineyard. Furthermore, not all good moments were the big ones. I was driving home one day and pulled over, admiring a sun descending behind the trees, casting long shadows as a stone wall and dirt road stretched out towards it, and briefly lost myself in photographing that moment. Another time I paused in my errands and stand next to a salt marsh, capturing a sunset that was both scenic and a harbinger of the oncoming autumn. Those moments weren’t just visually serene but also mentally peaceful. Additionally, I rediscovered playing music, and sat in front of Sara on Christmas Eve, sharing a vulnerable moment as I played her some songs I’ve written but not shared.

Again, the year is now done and I can’t change the past. So, I can view the year as full of setbacks, lost opportunities, and wasted time. Conversely, I can reflect and see much effort and perseverance, dogged determination and courage. I can choose to see the progress towards managing my condition, the planning that better sets me and my family up for financial stability in coming years, the house that has a few more projects crossed off the never-ending list, the adventures that materialized, the relationships that deepened, and the experimenting with creativity that were fulfilling. I can choose to see failure or triumph. I can choose to feel frustration or pride.

As I turn my focus to 2017, I think it is important to choose the editorial that points at successes, not failures. Equally, I believe that I should leverage this as momentum for the upcoming year, to build upon these hard-won victories, and to continue converting limitations into opportunities. If I continue to work at setting realistic but aspirational goals towards becoming the best me I can be, I believe 2017 can be a year filled with promise and potential just waiting to be discovered.

The end of one moment is the start of another, so let's see what 2017 has in store.

For now, though, one step at a time.

Jay Bell

How a Chronic Diagnosis Leads to the Deconstruction of a Life

Looking back, it seems so innocuous: I’ve put a lot of wear and tear on my feet through my outdoor adventures, and I aggravated a prior plantar fasciitis injury. Two years later, I found myself stunned as I absorbed the reality that I had a condition that would affect me and impede me for the rest of my life.

A diagnosis of a chronic condition can be traumatic. No, not one like high cholesterol that requires swallowing a statin and then diving back into the steak tips. But a big one. In my case, fibromyalgia: brain function and chemical changes lead to essentially a permanent fight-or-flight response that often results in ongoing pain, digestive issues, cognitive impairments, weaker immunity, poor sleeping, low energy, and the list goes on. But whether it’s this or others that could range from multiple sclerosis to bipolar disorder, from ankylosing spondylitis to alcoholism, from epilepsy to PTSD, there is one very stark reality that accompanies the acceptance of that diagnosis: the need to deconstruct your life in order to reassemble it in a way that addresses your new limitations. 

Drawing my blood turned out to be the easy part.

Conditions such as these aren’t cured with a pill, a pat on the head, and going on your merry way. Instead, they inflict both obvious and subtle problems long after you’ve left the doctor’s office. The obvious struggles include experimenting to discover the medicines and treatment regimens that provide clinical relief to get you through the worst moments and to stabilize you. That requires time, side effects, setbacks, failed attempts, crushed hopes, and a diminished quality of life.  Sometimes, that seems to me to be the easy part.

The harder part is accepting that you can’t live in the way you’re accustomed. For me, I’d already spent years working to be the healthiest and best me that I could be. I’d established a lifestyle and life  that I loved. I was happy, and bouncing between living in the moment and dreaming of my next immersive adventure. But now that’s all gone. The only thing I know at the moment is that I can’t really live that way anymore; living in the moment is currently a fantasy.  I need to be cognizant of my condition – all the time: I need to carefully start the day off. I need to religiously take my prescription and supplements. I need to eat militantly. I need to exercise. But I need to not exercise certain ways. I’m stressed by my need to avoid stress whenever possible. After an exhausting day, I then need to sleep delicately to try to make it through the night.  The list goes on and on, and when I deviate I pay the price.

But, in addition to all of those efforts, I also need to now examine my prior lifestyle and find all the ways I’d now exacerbate my condition. I need to recognize how certain fulfilling activities will cause flare-ups so that I can now avoid them. I need to identify how certain tendencies got me this far in life but now become liabilities. I need to assess my personality, behaviors, and attitudes and hone in on the pieces that aren’t unhealthy under other circumstances yet now create risks for me. I need to analyze my relationships and determine in partnership with those friends and family how I need to modify them in order for them to remain mutually nurturing and fulfilling.

As I've learned from time on the trail,
it helps to break up arduous efforts into smaller pieces.

That deconstruction is painful and hard. Having slogged through it once before for other reasons, I know what lies ahead. It requires an introspection that most people don’t engage in. It forces you to analyze not just how you’ve lived, but to understand why. It inevitably drags some skeletons out of the closet, because no one lives perfectly, and everyone has some blind spots. It forces you so far beyond your comfort zone that you couldn’t find it with binoculars. It leaves you questioning your perception of yourself, your world, and your place in it.  That dissection and rebuilding also takes time; time that you feel you can’t afford because you’re already chafing at the wasted time it took just to achieve a clear diagnosis. For me, I now look back at a couple of lost years. Then I look ahead to a couple more years to attain a new rhythm to life.  As a 45 year-old smack dab in “middle aged” territory, I’m very conscious that our time here is finite and I loathe wasted days, let alone months or years. But, this is my inescapable reality.

But to not face up to the task at hand is a worse fate. To merely wallow onward substitutes a ore unappealing situation than grinding out this arduous self-appraisal. It saves the mental discomfort and avoids trials and errors. But instead, it does nothing to move me forward. In fact, it adds to the physical pain and mental stress by refusing to cultivate my ability to self-manage and maximize whatever potential I have.

I'm not sure about finding a great reward at the end of this,
but I'll tryto stay positive.

I didn’t ask for a life-altering diagnosis to endure for all my remaining days; I shouldn’t be forced to break down and reassemble my life. Nor do those around me deserve to become collateral damage from my new limitations. Unfortunately, these things are not up for debate. The only choice is where I go from here. So I will doggedly labor through that deconstruction, focusing on one brick at a time in the foundation of that new life, and believe that better days lie ahead.

One step at a time,

Jay Bell, AKA Rock Hopper

Fear of an Awesome Time

Fear.  It can drive people, and lately it has been more of a part of my own life than I’m accustomed to.

After enduring a couple years of physical problems that doctors couldn’t understand or fix, I wound up with a diagnosis of fibromyalgia; basically, a chronic pain condition in which your nerves are constantly over-reacting and the corresponding chemical changes in your brain lead to other challenges, such as digestive issues, lowered immunity, impeded thinking, and trouble sleeping. I’m just beginning to get my mind around it, let alone to understand how best to manage it.

Last year's holiday stroll on Nantucket was
one of the most fun group trips I've ever taken.

It should sound like a blast: being invited to join a bunch of other couples we’re friends with on a long weekend on Martha’s Vineyard for a Christmas Stroll. We rented out a whole bed & breakfast right on the water, and events will be going on all weekend long. It seems to also offer a nice diversion from my challenges, right? Yet, I’m a little more anxious as the time draws closer, and now am on the eve of our departure with so many thoughts racing through my partially-fogged brain.

What if my feet can’t hold up and I’m in agony but nowhere close to our hotel? What if my back seizes up while watching a parade or street performers? How will my stomach handle it if I can’t bring my refrigerated probiotic that’s helped so much? How much of a price will I pay from cheating more on my militant diet than I’ve done any week in the last nine months? Will I hit an energy wall and need to quit the festivities and go back to my room? Will I drag Sara down with me, ruining her weekend?

Either you conquer fear or it conquers you.

Thoughts such as these can go on and on. If it’s a first thought upon awakening, I can’t stop it. But I also know it’s not best to dwell on it. A particular challenge right now is finding the balancing act between ruminating and assessing the situation and appropriately self-managing: while some meals will be unhealthy, I can eat compliant breakfasts, and with a room fridge, I can bring hard boiled eggs. I can awaken early to ease into the day and enjoy a sunrise. I can hit the gym in the morning to get some endorphins flowing and loosen me up a bit if I'm going to be active. I can bring some healthy snacks on our adventures to nibble compliant, nutritional food if my energy wanes. Since we’re morphing into various groups and offering lunch and dinner as meet-up opportunities, I can integrate a little down time here and there, or get a coffee or tea to get off my feet briefly. I can hang with the group but not be among the last ones going to bed sometime after midnight.

A late-November view of Martha's Vineyard from Cape Cod.

The basic reality won’t change: I’ll be on that island off of Cape Cod for about 72 hours. That time will pass. I will be with Sara and some close friends. There are only a couple of (admittedly big) things up for debate. The first is how I manage myself: do I push myself too hard, or do I push myself to make the most of the adventure while accepting my limits? Do I seek out activities I can handle and advocate for myself, or do I quietly go along with the crowd and white-knuckle my way along unless or until I have a flare-up? The second is what editorial I choose to attach to events: if the weekend is great, have I learned the benefits of acknowledging my limits or of calculatedly pushing myself? Or was I lucky? If the weekend devolves into a struggle, did I see the penalty of not acknowledging limits or not speaking up? Or was the whole thing a stupid idea to begin with?

For now, the piece I believe I can control is articulating and then pursuing my goals: I want to have the best time that my body allows, and to recognize my challenges only to the extent that I can then minimize them by my resulting plans. So I’ll pack food accordingly, scout out potential plans and see were the bigger dangers are, and identify my "safety valves" if I need them. I’ll then try to assume that I’m going to have a great time with great friends, and back off to allow the weekend to unfold in its own organic way. To put it more simply, my goal is perhaps no different than everyone else's: to immerse myself in a great adventure this weekend that evolves into a great memory afterwards.

It's not always a fun reality, but it is a frequent one.

One step at a time,

Jay Bell, AKA Rock Hopper

A Birthday Wish

I’ve hit that point in life at which I don’t enjoy celebrating my birthday. I’ve also hit that point when most people suggest it’s not that bad, because the alternative is death. Somehow, I don’t find that to be a heartwarming way to embrace my inevitable decline…

When I turned 45 this week, it wasn’t fun. In fact, it was probably a fitting middle-aged birthday: I was forced to work late. My kids wished me a happy birthday, but with the obligatory tone that suggests they’d be much more excited if it were their own event. Sara was out of town because of her own career demands. Life wore me out that day and left me in bed well before ten o’clock. Wow… eesh.

This year, I felt like I was barely hanging on.
Maybe next year will be different.

It doesn’t take much reflection to conclude that 44 was a rough year. It provided many doctor’s visits, a lot of uncertainty and anxiety, and culminated with a diagnosis of fibromyalgia, which brings with it a lifelong pain management situation. For someone who happily lives a pretty physical life, this sucks. What’s to celebrate? Blowing out the birthday candle, it’s easy to wish for something different, or a return to the life I was enjoying.

Where will life
take me next?

Like New Year’s, a birthday is a chance to take stock of the last year and to ponder what the next year may hold, or to articulate the wishes for the next year.  I don’t know what the year ahead may have in store, but I know that whatever happens, it will unfold at its own pace. Maybe my pain is exacerbated; maybe I have the first day in well over a year in which the pain doesn’t forcibly alter that day’s trajectory. Maybe I can again indulge in some favorite activities; maybe I remain “on the shelf”. Maybe I find some new activities to love; maybe I find myself taking on new ways of challenging myself and being horrified to discover that trying my hand at being a street performer of interpretive dance was an extremely poor self-assessment of my capabilities… OK, maybe I should start smaller.

The point is, life doesn’t allow me to hit a pause button. The band keeps playing, the stone keeps rolling, the wheel keeps turning. It’s fair to need to grieve for a loss, to allow yourself the emotions that come with an involuntary life change – particularly one painfully imposed upon you. But it doesn’t change your reality.

The paths in life are rarely easy. Nevertheless,
you've gotta choose one eventually.

As I begin accumulating some days as a 45-year-old, my more immediate focus is to not waste the time. So, my priority is about allowing myself to process the emotions of a rough situation. But, it’s also to figure out how to maximize my remaining time and capabilities that this stage of my life affords me. I need to pointedly push myself out of my comfort zone and experiment, but not force a lifestyle that isn’t authentic and genuinely fulfilling. While not an easy task, it nevertheless is the task at hand. I believe that whatever your lot in life, the best aspiration and focus is to try to maximize the potential of your situation.

My last year was one spent amidst uncertainty, negativity, repeated setbacks, and stuck in a painful limbo. Given where I landed and the clarity I received, my wish for my next year is to begin climbing out of that hole; to begin to figure out how to be passionately engaged with a life and with relationships that fulfill me, and to allow me to somehow positively impact the lives of those around me.

As a new year of life dawns, it's my wish to live it fully and to squeeze the most out of it.

One step at a time,

Jay Bell