Weathering the Daily Struggle

“There’s a lot going on right now.”

That’s been a common refrain for me since I started a new job and my husband had to have emergency knee surgery. I know it sounds like an excuse when I say that about why I don’t have time to read, or to paint, or hang out with friends. They probably think it is an excuse too. But the one who used to take care of everything else so I could work and pursue my hobbies is now severely limited in what he can do. So it’s all on me now. I just hope that whenever I say that, nobody asks me what exactly is “on me now.”

Because the truth is that there nothing going on with me right now that hasn’t been going on forever in everybody else’s lives. But with a chronic illness like fibromyalgia which limits my daily energy levels, those same daily activities feel like they are draining the life out of me, when for everybody else they’re just mildly annoying chores that they mostly don’t even think about.

To say that daily living chores and a fairly physically non-taxing job is wearing me out, I imagine is eliciting eye rolls right now. Like I should stop whining and suck it up at adulting. I am embarrassed to even admit it; it makes me feel weak and stupid. But it is also a frustrating reality I cannot escape.

For a while, I was taking care of my husband’s personal care routine when he was mostly bedridden. I will spare you the grisly details; suffice to say it was nothing physically taxing for a normal healthy person. He mostly took care of himself, all I had to do was arrange his things where he could reach them, and clean up after him. But now that he can hobble about the house, I don’t even have to do that. He’s even taken over meal preparations again, so we don’t have to eat like freshman undergrads anymore! (If you’re wondering about that last statement – I’m a foodie who doesn’t cook, and seriously lucked out with a husband worthy of chefhood!)

The rest of the “lot [that is] going on right now” is just everyday stuff that for most people is mindless living. I wake up early, limp to the kitchen for coffee and breakfast, I get dressed and work a full-time job. On the weekends I clean the house, do the laundry and get groceries for the week.

Nothing at all that seems out of the ordinary! Everybody I know does all of that and more, and still finds time for friends, books, hobbies, and exercise.

And yet yours truly collapses every day after work, unable to even consider going for the evening exercise class. I look forward to the weekend when I could rest. But even with my “tips and tricks” to ease my load, the weekends often end up being worse than the weekdays.

Laundry, house cleaning, dish washing, all take more arm and leg work than one might imagine. And I don’t even do a particularly thorough job of any of it. The walking and frequent bending/reaching during grocery shopping has always been hard for me. So we switched to online groceries that we now simply pick up at the store. But carrying those home, putting them up, all eat up pieces of my energy pie. Some activities eat a larger slice than others, and at the end of the day, I am barely left with crumbs.

So I am left weathered every night either passing out in exhaustion or unable to sleep because of the pain and discomfort. I am nearly continually in a flare these days, rendered functional only by virtue of tramadol. And a cold I fought for a week did nothing to help that situation.

I am also left cringing in shameful embarrassment at how far my life and fitness has fallen. For a long time it seems I had stopped thinking about how much fibromyalgia intruded into my daily life. When my husband took care of practically everything, and encouraged me to save all my energy for things that bring me meaning, peace and happiness, he did it all so apparently effortlessly! He never made me feel indebted for all that he does. Though I was always grateful, I now have a renewed level of appreciation for him and for everything he did. In doing them, he was saving me massive slices of my energy pie, because all those activities that are nothing for him are seriously draining for me. But most of all, I am grateful that he did all of that without making me feel any the less for not being able to be functional like a “normal” person.


I know this post ended up being something of a rant, but sometimes cheer takes too much effort. My hope is that this post sheds some light on what everyday life can be for someone with a chronic illness like fibromyalgia. And if you are a “healthy” reader who has an invisible illness warrior in the family, I hope this helps you understand what a struggle just everyday living can be for them, and why sometimes they are unable to partake in things that take no effort on your part.

The last few weeks with my husband’s immobilized leg haven’t been all bad however. There have been silver linings and moments of reflection. I promise to write more about them in a later post.

Love,

Fibronacci

What I Learned from my Leap of Faith

I ran, and I ran, and I ran, until I could run no more. I was at the edge of a cliff, and the only way forward was down. The waves roared below but I had no choice. Down, down, down I went. I felt the ocean breeze spray my face. Yet I did not hit the rocks. That’s when I realized, I could fly!


In fantasy terms, that largely summarizes the last year or so of my life. After struggling with a bad fibromyalgia flare all of my last semester at graduate school, I was at the end of my tether. I realized I needed to take a break before continuing on to any new work in order to prevent a complete collapse.

It was a tough decision for me at the time. It had been nearly a decade since I was on any vacation longer than a few weeks. I was concerned that while my body might feel better during a period of sustained rest, my brain would feel “wasted” without any brainy-work to do. At the same time, I was facing a lot of judgement from my professors who were not privy to my physical problems, and were convinced the break would ruin any prospects of a career. I was also worried that without something substantial to occupy my mind, I may be too focused on the pain and feel the worse for it.

Not knowing how I was going to react to an indefinite period of unemployment, it was largely taking a leap of faith. But as it turned out, most of my worries never came to pass. And in the process, I even learned a thing or two about myself!

So here are five things I learned about myself when I stepped off a ledge into the dreaded unknown:

1. I can actually enjoy taking a complete break from work for a while!

It certainly took a while — at first I was just very stressed about not having a career direction — but then slowly, I was able to embrace the lack of all absolute obligations, deadlines and requirements! Instead of feeling wasted, as I feared I would, I felt more open. Once I got comfortable with not having anything particular to do, I felt my brain slowly creep out of its “lefty” mode and start spreading its wings! I felt more creative and free, and thoughts and ideas flowed in and out of my mind more easily. I loved the peace and quiet, the serenity of the guilt-free time to think and write. Now that all of my energy wasn’t spent working, I had more energy for other things (like, as silly as this might sound, washing my hair!).

2. It is impossible for me to be bored.

I know when I first floated the idea of the break, many well-meaning people thought I might get bored. I wondered about it too. But as it turns out, my mind is too full of things to ever be bored! I always have something going on in there — perhaps a new idea for a painting, or a blog post, or even a future book! Most of the time my mind is full of reflective, meditative thoughts about both the world inside of me and that which surrounds me. My home is practically a library, so I always have a stack of books I am working through next to my bed. My capacity for imagination may be endless when I choose to engage in it. And I am surrounded by both instant access to knowledge (thanks to the internet) and a mind that voraciously craves new and varied information about a diverse set of topics. So, as I learned, it is impossible for me to get bored as I am engaged in too many activities at any one time, even if I don’t move a limb!

3. I can get too inward-focused for my own good.

Truth be told, given a choice of living in the “outer” world and the “inner” world, I would choose the “inner” one any day. And as I got all comfortable living in that “inner” world last few months, I realized that is also a problem. As someone who has always suffered from social anxiety, it has taken me years of practice at being around people to learn how to function properly in the world. It is never comfortable, but it is an important life skill. Yet now, I seem to be using fibromyalgia as an excuse to get more and more away from the outside world and turn back inwards. Without any definite obligations to attend to, I feel especially free now to just give in to the regular ups and downs of the condition, and just stay in and recoil into my own world even more. This can begin to feel too comfortable after a while, something which, ironically enough, makes me quite uncomfortable! So I learned that I need things that push me against my instincts and challenge me, so life stays fresh, interesting, and even a little challenging all the time!

(Besides, neck strain from too much reading is contributing to some killer headaches last couple of weeks, so it is clearly time I got out and did something else!)

4. I am more OK with leaping into the unknown than I had thought I was!

When I was first offered my current job with the state government, I was not sure about it at all. I was afraid it will take me too far away from biology proper. But ultimately, after a lot of deliberation on other potential options, I decided to take the plunge. One of the things that appealed to me about the job was that I knew nothing of the specifics of what I was about to do! That was a good thing, because I did not know enough to know what to be stressed about! And I realized that I love this feeling of the “beginner’s mind” that can only be accessed when exploring the complete unknown. This is how I felt when I first walked into the research lab as an undergraduate that I eventually graduated with a Ph.D. from! I knew nothing about doing science, so I was eager to learn all I could. With an open mind, I was able to think about what I was learning without the restrictions that come with expertise. It was a feeling of freedom, of possibilities, of growth, and of accumulating life experiences — all of which I dearly cherish. Now I feel ready to inhabit the “beginner’s mind” once more. I have no real clue where this unexpected path will take me in the future, but I am in for the ride with an open mind.

5. I was ready for a major change.

After spending several years working as a bench biologist in academia, I will be a data scientist for a government agency. That is about as different as different can get, and I remain surprised the opportunity even came by me! But, I feel ready for it. I feel I am too young to cage myself into a narrow realm of possibilities. I had stayed long enough in academia to recognize the good, the bad and the ugly in it. It was time for me to explore a different setting now, a different field. My interests are too widespread to be constrained into the narrow niche that a standard academic career demands. So if I am going to play outside of the academic playbook, I would have to create my own paths into a non-standard career. I feel like this job out in left field is the first step in that direction.


For a fiercely analytical person, who likes to weigh the pros and cons of everything, taking a leap of faith can be very difficult. This was especially true of me in the case of my break from employment, because it conventionally bodes ill so early in one’s career. But at the time I had few other choices, and luckily, everything turned out just fine in the end! Plus I really appreciated having the time to exclusively manage the nasty flares that have gripped me most of this year. So I wanted to write this post not just as a future reminder to myself to not be so afraid of doing the crazy “unthinkable” thing, but also as an encouragement to anyone else who may be in a similar spot as I was back then.

If you’re feeling iffy about the jump but it’s edge of your cliff, close your eyes, and trust your wings.

Love,

Fibronacci

Reflections on Graduate School, Academia, and the Way Forward

This week, I successfully defended my doctoral dissertation, and added my name to a long list of Ph.D.s in biology – and a shorter list of those with a chronic illness.

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How a fibromyalgiac gets a Ph.D.!

As I have researched the case for disabled and/or chronically ill scientists, I realized that there may actually be more of us out there, all hiding our own plights (if invisible), so as not to be viewed “differently” at best, or ostracized at worst, by our colleagues. Many have quit science altogether because of its notoriously performance-driven culture, which allows little room to show “weakness.” Yet there may be many more of us who are still striving for our own goals in science, wishing to contribute our curiosity and intellect to better the world, and wanting to make a mark independent of our diagnoses. My thoughts are for all of us today.

Featured image: Distorted Reflections (8X10, oil on canvas)

I was diagnosed with fibromyalgia halfway through graduate school. I have been tackling random aches and pains, migraines, etc. since my teen years, but sometimes I wonder if the grad school lifestyle is what triggered any latent tendencies for central sensitization, leading to fibromyalgia.

I have no regrets, however. I always thought that if mathematics and physics are what helps us understand the universe and everything in it, biology is what helps us understand why we can even think about it! So to be able to reach a terminal degree in biology, understand ourselves from a molecular standpoint, showed me that I am capable of not just partaking in this world, but also contributing to it. Here, finally, I could apply my logical and analytical thinking towards human health, instead of just using it to aggravate my parents who had no time to argue.

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What NOT to say to a chronically ill person

I will admit that at times I thought of quitting, and I am glad that I did not. I was lucky enough to have projects that allowed me to be very prolific through the first couple of years, so I was well on my way towards a successful Ph.D. before FM even hit me. It would have been sad to see that work not reach fruition. I was also able to wrack up enough “karma points” by then, through my diligence and good reputation, that I could afford to slow down but still keep trudging. Luckily, graduate school in an academic institution affords the kind of flexibility that I may never experience in any other setting. So all the reasons to quit were psychological, nothing logistical.

Psychology can be powerful enough to transform us and shape our decisions. With some practice, and within reason, we can learn retrain our brains to think of current obstacles as future achievements. The hardest part about continuing grad school was not that I felt I couldn’t do the work. It was, instead, the loss of respect I felt at every turn when I could not keep up my former hours, or work at the same speed – the perception that I was now somehow weak or less than I was before. A large part of this was not necessarily just other people, but also “academic conditioning” that was haunting me from within my subconscious. But regardless of this general no-room-for-weakness atmosphere, or perhaps precisely because of it, I learned to see myself as quite the opposite of how they would have liked to paint me.

I realized that, because of my experiences, I was stronger and more than I was before!

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Anima (8X10, oil on canvas) — my internal warrior & heroine!

One thing I recognized since being more selectively open about my diagnosis is that everyone is fighting their own battles. But one is not made a hero for just fighting, or even winning, a battle. One is made a hero for how they fight it. I decided I was going to fight mine, and fight mine well. I felt increasingly that it was not enough, any longer, to just try to be a good graduate student, or strive for women scientists, or be a feminist voice for career-women in the conventional sense. I had to find within me to be more than that.

I decided that I will strive to be a better person because of my struggles, internally as well as externally. 

I will learn to be more compassionate (towards myself, as well as others who may not always be understanding of my condition); I will try to reengage in interests I may have lost touch with (so I am not beholden to the one deity, science); and I will be even more introspective than I was before, learn more about myself, so I can carve out a new identity for myself as I move forward.

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Drawn into the Light (7X14, oil on canvas)

Once upon a time, I used to be naive enough to think you can get whatever you want, be whatever you want, as long as you work hard enough for it. But life makes too many decisions for you, and often at very critical stages, so that is not always possible. Once upon a time, I had dreams of being able to follow my intellectual curiosity wherever it took me. The reality, however, is that if I did that, I would be potentially looking at 60-hour work weeks with little time for rest. I would be a flaring mess of pain and fatigue if I followed that route!

But it is not impossible to reimagine ourselves, our interests, our desires, and channel them into another path. The last two years of my life, trudging through grad school with FM, I have spent a lot of time focused inward. I have questioned what I like and why I like it, and how I can do it differently in a way that is conducive to a healthier lifestyle. I have also had to untrain my brain from thinking my intellectual pursuits are automatically married to academia. Once I did that, I could see the different possibilities that may still be out there for me.

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Reimagine the possibilities!

So by no means is this the end of the road for me. I like to think of it as a fresh beginning. I have gained insights through my years as a graduate student with a chronic illness that I could not have gained otherwise. It formed a preface to my life’s goal, which is learning how to merge my health needs with my intellectual ones without completely giving up my ambitions. The next years will write the chapters on how (and if) I am successful in ever attaining it.

I look forward in continuing my journey forward, and sharing any insights with you. Thank you for accompanying me so far in this roller-coaster ride that led to my Ph.D.!

Love,

Fibronacci

Tough Realizations (Part II)

After a recent particularly bad flare, I had to make a difficult decision to walk away from a field in which I realized I was not welcome at anymore. If I stayed, I would constantly be forced to push myself beyond what I was physically capable of, and would still not be able to meet expectations. So you would think the separation would be mutual and amicable; yet it is not.

In many ways, I feel like I am still very tied to my work identity (although it’s been a work in progress detangling myself from it). Being a “scientist” is one of the major ways I identify myself. Every other descriptor I could think of – artist, woman, chronic illness fighter, etc. – are all farther down the list. When I think of descriptors of myself, “relationship phrases” don’t show up very high either. Many people identify themselves strongly as a parent (father/mother) or child (son/daughter) or spouse (husband/wife), or in other such relationship terms. I have trouble with that. I have always been a painfully independent person, almost to the point of being a loner. And I suspect it is the associated loss of both personal and financial independence, that comes with being ill and out of work, that is at the core of why it has been so hard for me to face the fact that I just need to take a break to focus on my health for a while.

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I am tired of pretending I am stronger than I am . . . so why can I not STOP?

The loss of personal freedom has been something I have been constantly struggling with since developing fibromyalgia. While I can be great at offering and providing help, I absolutely suck at seeking and accepting it! It took me a while to even recognize that I had my partner in my court, and that its OK to lean on him and allow him to help me. It made a world of difference once I let myself be helped with my day to day tasks! And for once, I felt comfortable enough being helped that I never realized how hard it would be physically to live without that help!

Living in a small town, my chances of getting a job here were pretty minuscule, especially in science. For many years, I kind of saw this as a boon because I hated being trapped in one place for too long, and this place seemed to come with its own time limit. But now that it was time for me to move on and take a job in a different part of the country, I had to seriously consider how I would manage a demanding full-time job with other issues like uncertain transportation (potentially a lot of walking), cleaning, cooking, laundry, bathing/hair washing, and a myriad other day to day things that I often need help with. All of the little things that didn’t even merit a thought in my brain at one time are now all serious issues that have the potential to wipe me out and flatten me on my back for days.

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Accepting help is its own kind of strength

I realized that for the first time, I actually need my husband to be with me, physically, and help me out! Not to mention, I would also need him financially, if I were jobless, and not just to provide general subsistence (a shared need), but also for my healthcare needs (a very personal one). And I have never needed anyone in that way before. As a person who prizes her independence, that realization – that I might really need someone now – was one of the toughest I have ever had to come face to face with.

My husband knows how hard that is for me. In fact, he has always known it. That is why he has never made big deal of helping me – he just did it quietly and unassumingly – and made a point of doing so without treating me like an invalid. I feel like very few people are lucky to have that kind of love in their lives. And that is why – perhaps what has been even tougher for me to face – is that even that kind of selfless love does not make up for the sense of loss that I feel due to my illness.

This realization has been really hard for me because it is almost like admitting his love is not enough, despite everything he does for me all the time. And it makes me feel guilty, because he has been the only constant force through many of the things that I have been battling for many years. Yet it is not as if I am not grateful to him and for him. But it is the gratitude that one might feel for nurses when interned at a hospital. It’s great to have that tender loving care, but they would much rather never be in the hospital in the first place!

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It is through the snow that spring bursts through!

Though, in some ways I wish I never had to face these harsh realizations, in other ways I am grateful for them. It has given me a chance to really think about why my work identity matters so much to me. Why am I so loathed to accept help? Why do I feel this insane need for independence? It has given me an opportunity to delve deeper into myself and work on long-standing issues that I may never have otherwise. So as a person who craves new and varied experiences, as unpleasant as this one is, I still see it as an adventure! I am still expecting good things to come out of this time of uncertain and difficult realizations. I may be a ship in a bottle for now, but that doesn’t stop me from still looking out towards the sea.

Love,

Fibronacci

Tough Realizations (Part I)

What felt like a whirlpool inside a sinkhole around this time last week, is finally looking like just a simple crater (minus the suction) now. For the past month or so, I have not been able to fully shake off a flare. With fewer hours spent at work or recreation, and more resting on my heating blanket in bed, I feel like I am starting to get this down to somewhat manageable levels. My doctor and I are also working on new medication to see if that can help with the daily pain and fatigue management. The upshot of all of this has been a lot of soul-searching, a healthy helping of frustration and some unavoidable, tough realizations about the way forward.

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“Pushing Through” – crocus flowers pushing through the snow in spring (digital, “oil on canvas” finish)

Until last year, I had some hopes of being able to graduate and move on to an academic postdoctoral training job. I had the condition enough under control to be a reasonable (though less-than-ideal) postdoc for few years to gain the training I would need to eventually move on to a more cushy, permanent job. But I rapidly realized that those dreams were castles built in air, for two reasons:

(1) My body decided even coming close to that kind of workload is a no-go.

(2) “Reasonable” postdoc jobs are practically impossible to find. The boss wants a publication-machine, not a person with a life. Add a chronic illness to that? Unthinkable!

Which brings me to the tough realization – that unless a fairy-godmother steps out of a pumpkin for me, I am probably going to have to take a real break after graduating and be out of “real” work; or (what feels like a complete non-option), take on a postdoc job that might be the (figurative) death of me.

In case you were wondering what I mean by “real” work, you are in good company. I have been giving that a lot of thought lately too, and may be topic for a future post in itself.

I feel like some part of me knew all along that it would come to this, but I needed the latest flare to remind me to quit kidding around. I spent the entire last year coming up with every reason for why I cannot be out of a job – everything ranging from financial, to emotional, to career potential and innate ambition. But all of that has come to nothing. I realized that the time is here and now for my husband and I to start revising our budget to account for the absence of my paycheck. And I am not looking forward to the pain that changing health insurance plans will inevitably be!

What I do know for sure is that it would be utter stupidity now to ignore the gut-punch that my body has just dealt me. (Talk about tough love!) And that I need to prioritize my health in a very real way – not in the kind of tangential way I had been doing before. I know things are going to be financially tight for a while, but I am hoping that taking a temporary break will help me get back to a different kind of work later on. Otherwise, I am afraid I might crash for good at some point in the (probably not-too-distant) future and never be able to work at all, and then finances will be tight forever!

For now, I am trying to focus on pushing through one day at a time. I try to keep my chin up that this might be the beginning of a new trajectory that might lead on to a fruitful new journey. I am not one who believes in regrets. I believe that every path we choose at a fork leads us down a different probability. And each of those probabilities will have its own ups and downs, and none will be perfect. So take your pick and let life lead you on!

Love,

Fibronacci

If I Had One Wish . . .

. . . I would wish for perspective. It is so hard to gain and so easy to lose, especially in difficult times.

Over the course of the past year, I had been able to slowly piece back together some of the shreds of my old hopes and dreams – only to feel like they are now being shattered all over again. And the only thing that feels worse than losing your life, is thinking you have it back and then losing it again.

Featured image: Contemplating the Darkness (12X16, oil on canvas)

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What do you think he is wishing for?

I don’t think I had ever quite fully appreciated how much my FM symptoms had improved over the last year or so. With medication, reduced work load, regular exercises and prioritizing rest, I was able to attain some level of normalcy. It was a new normal, but it was a normal. And for the most part, I was feeling better.

In some ways, I was really thinking that I had this thing under control . . . that I was ready to move on to a full-time research intensive job – something that had seemed unthinkable to me just a couple of years back. I knew I could not stay in that high-stress environment forever, but thought I could manage the less-than-ideal position as a temporary stepping stone to something better. I was finally starting to plan for my future again.

But as the work load quickly ramped up this semester, in preparation for graduation, all hell quickly broke loose. What started as a mild flare is now feeling like a full-blown relapse. The bad weather spell we seem to be in is not helping either. And yes it has been stressful. But if it is just the weather or the stress, I am reacting to them far worse than I have in a while.

The pain levels have risen sharply, becoming more widespread, and staying that way most days even with pain medication. The stabbing pains in my chest, diaphragm and back have made breathing a laborious affair. Talking can take much effort, and sneezing, hiccuping or coughing is making me cry out in pain. The fatigue can feel bone-crushing in itself at times. But sleep is a precious commodity that is not easy to come by under severe discomfort (especially when you’re a side-sleeper and the nerve pain is raging on that side!) – thus perpetuating a vicious cycle.

I can already feel my mental state suffer, despite my efforts to stay calm and carry on. Despite a conscious effort to be friendly and social, I am feeling more moody, less patient, and snapping more easily than I would like. I am genuinely afraid that I am more or less back to square one in my fibro journey. And that it is all my fault for pushing my body too far, as soon as I started feeling a little better.

I feel like I had lulled myself into a false sense of security when I was beginning to hope again. But I am realizing quite acutely that the lifestyle I would need to maintain to continue feeling better is not one conducive to the life of a scientist! Very few grad students, and barely any postdocs, can get away with coming to work around 10-11 AM, working barely 6-8 hours a day, and taking large chunks of time off in the middle of the day for PT/rest. Most work 60-80 hours a week. I am entering a relapse after a couple of months of not even 50!

This was an important lesson for me. I learned that I cannot slow down, feel better, and decide now I can pick up the pace again and all will be well. Fibromyalgia requires a lifelong management scheme. And while I had made some level of peace with that, I was just not prepared for the violence with which my body would react to the idea of temporarily deviating from that plan.

In a weird way, when I was working those ~50h/wk for the month or two, I felt a vague sense of accomplishment. I was trying my best to still squeeze in some rest, and trying to only start work during my “best hours.” So I felt a renewed power, a sense of vigor, from feeling like I may have beat my condition and risen on top of it. I was able to snatch back from it some fragments of my go-getter self that I hated losing the most. But alas, that was not to be. And that feeling of loss for a second time feels like a slap in the face. Like I have been put back in my place.

At a time like this, I keep reminding myself that this current low is not going to be forever. I can still plan for other things in my life. I have changed plans before and I can change them again. There is a lot of things I can do, and this one setback is not the end of the world. This closed door may even open new windows. In other words, I am striving to remind myself to not lose perspective. Yet, that is the one thing that is gained with so much difficulty . . . and yet lost so easily!

Love,

Fibronacci

Contemplating Authenticity

Recently I was speaking with someone about the root causes of fibromyalgia who used to suffer from the condition in the past and studied it as well. She confided in me that she felt like much of the pain and fatigue developed from not living in alignment with one’s true self.

I have to admit that the idea had crossed my mind before as well. Like some part of me might know that I am headed on a road that is ultimately not who I truly am, even though I may not be consciously aware of it. And it is kicking and screaming, trying to get my attention – through the FM symptoms – to get me off that track. It is forcing me to pause, and do some soul-searching to find what it is that I should be doing that is indeed in alignment with my authentic self.

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What better way to ask about “authenticity” than with a digital painting? Abstract Roses in digital oils

Presumably, once one reconciles their actions with their true identity, the symptoms improve. That is what, I got the impression, she believes happened with her. She also cited life stories of several people she studied with FM – many with high-achiever, goal-oriented personalities and fast-paced lifestyles (stories similar to mine) – who switched career tracks as a result of FM and now are doing much better. Plus they are now much happier.

Of course, one might view the data completely “non-spiritually.” You get ill. You realize your current lifestyle is not conducive to your feeling better. So you make the difficult choice of changing it to something that bodes better with your current state of health. And lo and behold, minus the added stress and pushing past the limits, you start to feel better! This is, of course, the very premise of pacing! And who wouldn’t feel happier if they got off the FM roller-coaster?

While I have nothing against the sort-of spiritual way of thinking about the condition, I cannot but feel like it is a bit too close to the “it’s all in your head” dismissal that so many of us have heard so often. I know, though, that it is not how she meant it. She is well aware of the stigma attached with invisible illnesses. But I still bristle at the thought of how there is so much more open room for interpretation and/or conjecture with conditions like FM, which cannot be tracked to a particular cause (yet), than other illnesses with more definitive causes.

Regardless, I can certainly see the merits of her spiritual way of viewing the world. I imagine it goes a longer way towards promoting acceptance and and sustainable changes in lifestyle than a purely medical train of thought. You may feel less indignant, or like you’ve been dealt an unfair hand, if you think that it is your unconscious mind that is using FM to steer you towards the right path. This way, you might resist less in making the changes necessary for your well-being.

But once one is past that stage, I am afraid that there is a lot this worldview alone cannot fix. It is the same issue that I have with positive thinking. Positive thinking in the form of cognitive behavioral therapy can be beneficial in helping one come to terms with their condition and not make their pain worse due to catastrophizing. But beyond that, no amount of positive thinking can cure FM any more than they can cure a tumor. Likewise, I doubt authentic living could necessarily get rid of my flares due to period or bad weather.

However, none of this is to say that we should not try and make the best of the situation and do some soul-searching. Whether or not it can cure FM, chances are that a balanced, fulfilling life can only really be cultivated if it is in alignment with one’s authentic self.

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Is it “authentic art” if it only exists in pixel space? Abstract Tulips in Glass Jar (digital oils)

Now more than ever, as I stand at a transition phase, I keep thinking of what kinds of paths would appeal to my true nature. Despite the subject being a recurring motif with me, I have been giving it a lot more thought after developing FM, since I was forced to turn off the auto-pilot and take the gears of life back into my own hands. I do believe that finding and living in accordance with my true self will bring a measure of happiness and inner peace that I often lack now. And if my fibromyalgia improves with it too – well, I’ll just consider that a bonus!

Gentle hugs,

Fibronacci

Overcoming Brain Fog

Going through life with a fuzzy brain can be challenging enough, even when one is not in graduate school! But being in a field where cognition is highly prized, I had to learn fairly quickly how to compensate for the brain-jelly effects of fibromyalgia and its medication.

Featured image: Reclamation (11X14, oil on canvas)

Below are the 5 most helpful brain fog coping skills I have learned.

1) Use your smartphone for lists and reminders : If you find you forget your memory aids (like leaving your grocery list at home), this one is for you! Most of us carry our smartphones with us everywhere, and it is easy enough to make lists, and add events to the calendar on those. They also have handy alarm and reminder features, which is a plus!

What if you have trouble remembering to add the commitment to the calendar on your phone? I find it best to add the event as soon as the appointment is made, before you have a chance to forget!

2) Jot down/verbally repeat key points in a conversation : Any discussion, specially scientific ones, require some level of on-your-feet processing of information for the exchange to be meaningful. When conversations start turning into word soup, I often find it helpful to repeat important points/questions, and/or write them down to help process it in a different way (auditory vs. verbal/written). Having quick notes also means you can think about it later and contribute your insight at a better time.

3) Avoid multi-tasking (if possible) : Multi-tasking requires being able to switch gears from one thing into another fairly seamlessly, which takes more mental capacity than just focusing on one thing at a time. More things happening at the same time means more chances for confusion and making mistakes. But if you must do it, below are two quick tips:

  • Multi-tasking tip #1: Take a short (mental) break between two tasks. This often keeps me from mixing up the details of one activity with those of the other.
  • Multi-tasking tip #2: Keep a plan of what needs to be done for each task. For example, if I am running 2-3 experiments that each take several days to complete, I will write down what needs to be done for each experiment on each day.

4) Use isochronic tones/binaural beats to help focus : I cannot say that I am 100% sure that brainwave entrainment actually works, but it is free and certainly something that is worth a shot! There have been times when beta tones have helped me not get distracted, and delta tones have helped me stay asleep . . . and there have been times when they have done nothing at all! They usually work when I use them for short periods of time, followed by periods of disuse. I suspect if I use it every day for too long, I start ignoring it, and that is why they stop working for me from time to time.

5) TEACHING TIP – Turn brainfarts into teachable moments : In my experience, students typically respond well to your mistakes if you can praise them for being able to spot it, with an appropriate apology, and turn it into a teachable moment. And if you are asked a question you do not know the answer to, it is OK to admit to not knowing it and offer to look it up for them. Alternatively, teach your students to be independent knowledge-builders by showing them how to research (aka, google) their question themselves and find reliable answers.

A lot of the tips above may seem really obvious. But I had to go through some trial and error to figure out what now seems most elementary. So if you are in a spot where you feel forgetful, unfocussed, frazzled or foggy, I hope these tips give you some ideas for how to successfully wade through the murky waters, and be able to achieve more from your day!

Love,

Fibronacci

My Quest for Peace

Cognitive challenges are one of the unhappy symptoms of fibromyalgia. I am lucky in that my brain has not completely turned into mush yet because of it. But between FM and the medication for FM, I have to admit that it might be softening at the edges a bit. Yet it has brought me closer in my quest for mental peace, in a way that I had never experienced before.

Featured image: Journey into the Light (8X10, oil on canvas)

Once upon a time, I could ace over 15 credit hours of courses a semester, along with teaching/tutoring and the myriad responsibilities that came with that, lab work as an undergraduate research assistant working towards an honors thesis, and still be able to keep up with all the bills, budgeting and financial responsibilities of our home, and perhaps more that I cannot now recall.

What would I have not given, back then, for some mental peace, some quiet space in my brain? To be honest, probably nothing! I just wished it could be tacked on on top of everything else! I took a lot of pride in being able to hold everything together by myself. I enjoyed the feeling of success. I did not know enough of what mental peace felt like to know if any bargain would be worth it.

Over the last few days, it has just struck me how I have been slowly letting go of all that more and more. I cannot place when it exactly started, or what the progression was like, but now, all of a sudden, I find myself barely remembering to pay the few bills that I am still responsible for. If one experiment schedule changes, or one extra thing gets added into my day/week, and the written reminders are not immediately updated, I often forget that those changes happened. I use reminders on my phone for my medicines, but if I miss the reminder, I even forget to take those!

All I can figure is that I used to have a mental PA, who was always up and awake at all times, and managed my day/week/life, and updated the mental calendar with any changes that happened, so I could keep up with it all – and now she is starting to slack. She often falls asleep on the job, or does not (re)calculate fast enough. This results in me forgetting things from time to time, making some embarrassing mistakes, others that cost time and money, and occasionally feeling as useful as a wallflower.

However, the upside of this is that it has brought me more mental peace than I ever had before. Much of the chatter in my brain seems softer now. The wheel in my brain that used to always churn, never allowing me to mentally relax, is now churning a bit slower. As a result, I am able to achieve a level of calmness in my being that I never knew was possible.

Even when musing about my past abilities recently – this was after I had just made a series of goofs because of my forgetfulness – the delayed processing meant that the musing was without any bitterness or resentment. There was only with a sense of nostalgia; like what an old person might feel, something in the lines of “I had a good run while it lasted.” And I am grateful for being able to make the most of it.

I did not choose to trade off my highly prized uber-independence for mental peace necessarily. But now that the decision has been already made for me, perhaps it is not all that bad as I thought it would be!

Love,

Fibronacci

Meditation for Pain Management

I read a paper recently by Mark Collen (founder of PainExhibit.org, an interesting collection of art made by artists with chronic pain, expressing some aspect of their pain), where he recommends a holistic approach to pain management. He suggests taking a “daily SWEM – socialize, work, exercise and meditate,” along with your pain medication, to manage chronic pain. He calls it the biopsychosocial model, because it involves aspects of pain biology, and the social and psychological well-being of the person suffering from the pain.

For the largest part, I like what the article talks about, and I agree with it. Hanging out with friends (socializing) or getting in work mode to find some engagement and routine certainly sound like reasonable distractions to help cheer you up, not feel isolated and feel accomplished towards some purpose. Exercising has also been shown before to improve mobility (or at least reduce the rate of its decline) in patients with chronic pain. [I will give a personal update of my aquatic physical therapy sessions soon in another blog post.] But while they are all good advice, the article did not give many tips on how to practice some of these ideas. That is perhaps the biggest drawback of the article, because I could see many with severe chronic pain not being able to leave the house to work, socialize or exercise.

This is why I like his last advice the best – meditate! This is something one can do anywhere, even laying in bed moaning in pain.

Featured image: One of my original oils on a 7X14 canvas, titled Sun Meditation.

I have personally used three types of meditation with good results: deep relaxation, guided imagery and mindfulness meditation. I have given a brief account of my experience with each below, along with links to some of my favorite videos for each.

Deep Relaxation

I find this especially nice in the middle of the day when the stresses are starting to build up, my pain levels are starting to rise from lack of rest-time at work, and my energy levels are flagging. A ten-minute guided relaxation meditation helps me feel calmer and more grounded, helping to release some of the tension and adding just enough energy to make it through the rest of the day.

Guided Imagery

I use this a lot in the mornings before I have shape-shifted from the tin-man into my human form, to help with the pain and stiffness so I can get on with my day. Basically, you are guided into imagining an interaction with your pain and dealing with it as an object. Along with helping me to relax, I actually find this helps reduce pain levels at least temporarily! At first, I almost always find the pain rises when I focus on it, but then as I continue, its intensity decreases. This surprised me at first because I wasn’t expecting it to work as good.

I have a couple of favorites for this type of meditation: a short ten-minute version (which I use in the mornings) and a longer 1-hour version by Michael Sealy, which I use at night. Sealy calls it “sleep hypnosis” but it’s really all the same I find! Incidentally, as a plus, the latter does also help me fall asleep!!

Mindfulness Meditation

This is probably the type of meditation with the most amount of research behind it showing its efficacy. Mindfulness is the way to live in the present moment – not worry about the past or the future, not try to change anything – just observe what is going on without passing any judgement on it. This is something that takes a lot of practice at first. At some point, it is supposed to become second-nature, but I have not achieved this regarding all aspects of my life just yet. This is useful when I am in serious pain and wanting to throw me a pity-party. A lot of the stress and self-pity comes from worrying about what the pain has done to you (and your plans) in the past and how it will affect your future. Just being in the moment and acknowledging the pain, but not passing any judgement regarding it, is curiously freeing. I am learning to do more and more of this and just taking one day at a time, without stressing about the future, and acknowledging the state of things without judging its impact on me. As you can imagine, I don’t succeed at this at all times but I try!!

Michael Sealy has a short video to help you get started on mindfulness meditation, if you feel so inclined, but this type of meditation is really not best done “guided.” It is useful to read about it and practice it by yourself. “Mindfulness: An 8-week plan for finding peace in a frantic world” by Mark Williams and Danny Penman is one of the books that might make for a great starting point.

These are just my coping strategies, I don’t know if they will help others or not. But just in case anyone wanted to try it out, I hope this helps them get started. You never know what helps until you try it out! I was certainly surprised by how well some of these worked. And now meditation has become one of the go-to tools in my arsenal!

Love,

Fibronacci

P.S. If you are interested in reading the paper I mentioned in the post by Mark Collen, it is called “Operationalizing Pain Treatment in the Biopsychosocial Model: Take a Daily “SWEM”—Socialize, Work, Exercise, Meditate” and was published in the Journal of Pain & Palliative Care Pharmacotherapy in 2015. It is a pretty easy read despite the mouthful title!