In the Grand Scale of Things

The title is a bit tongue in cheek today because the little wildflowers are anything but “grand” in scale! But these tiny flower bouquets, that seem to crop up out of nowhere, add a lovely bit of color to the woods and can be such a joy to ponder. They can feel grand in essence despite their diminutive physical presence.

These little yellow flowers are abound during the spring season in a swampy wooded area I like to walk in whenever the weather isn’t oppressively hot. That isn’t very much of the year when one lives in the sub-tropics, so I really have to make the most of the time I have! That they are spring flowers should be no surprise given their bright as sun yellow color.

I find it sad how most people walk past these little beauties without a thought, only to behold the tall, defiant cypresses that grow in the same area. The latter are majestic and worthy of looking up to (and I mean literally, for these trees can be really tall), but in many ways, I prefer the delicateness of the former. The flowers just feel “happier” to me somehow.

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Do you see that little fuzzy ball on the bottom right? I’ve no clue what it is but it’s so cute!

That is so much of life, isn’t it? Especially with a chronic illness. When the good days are few and far apart, we try to make the most of what we’ve got. When the big goals seem too far beyond reach, we focus on the smaller ones. We learn to find joy in the smallest of things.

It sounds like a compromise, and everyone makes some compromises in life at some point or another. But when you’re young, you face judgement from ignorant faces, who are not intimate with your trials, but who feel you have made that compromise too soon in life. You’re left to wonder if you are getting “too comfortable too early” (in my Ph.D. advisor’s words) too close to the ground.

Or is it simply that you have realized that the things that mean the most to you are exactly where you are. That true happiness really is in the smallest, the most seemingly insignificant of things. And that when we reach for the heights, it is usually only to attain something of an illusion – an illusion of power, of respectability, of security. And during that process, as we are looking up at the heights, like that of the cypresses, we miss all the joyful little wildflowers that beckon to us from down below.

In a quiet, meditative moment, it may be wise to wonder: In the grand scale of things, which one matters more?

In the last few weeks, I have gone through another round internal conflict in trying to balance the part of me that wants to reach for the heights, and the part of me that sees sense in drawing the energy from the wildflowers. I concluded that the little joys of the present outweigh the potential of illusory powers in the future. While it is true that I would find much joy in making the best use of my scientific training to benefit society, I had to admit in a moment of honesty, that I would find more joy in not feeling like absolute crap while doing it! This meant finding a line of work that may be “closer to the ground” but more in line with my priorities.

None of this is to say I still don’t have that ambitious spark which would like to see me accomplish big, important things in life. But for now, I feel like just getting through my new exercise routine, without the excess fatigue grounding me in bed for the next several days, would be accomplishment enough for me!

Gentle hugs,

Fibronacci

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Working with a Chronic Illness: Flexibility vs. Structure and Routine

In my last post about how I did graduate school with fibromyalgia, I touched on a point about being careful with how flexible a “job” grad school can be, which has its plusses, but can also be a double-edged sword.

This was not the first time that I thought long and hard about what kind of a job would be better when leading a life with a chronic illness: one that is very flexible, or one that has a more structured routine.

There are lots of “pros” to a flexible job, like that of an academic professor or a lab director. You don’t have to be up too early, can rest in the middle of the day, and take time off for flares as needed. But there are “cons” too: you end up working odd hours, and the body often doesn’t know what to expect when. Not absolutely having to do something now, also means it is easier to put it off for later – and the ephemeral “later” may turn out to be a worse time than “now.” This has the potential to cause much stress, which can be a trigger for a fibro flare.

With a more structured job, days are better-planned, and there is a chance to settle into a reasonable routine, and perhaps reduce the frequency of flares with better pacing. But when flares do occur, it is harder to take time off. The other downside is that constant working during the day, and the pressure to stick to the routine, can get tough on the body, especially if you’re prone to fatigue.

On that note, I read two very poignant articles. The first is a great piece on the importance of routine, on a blog I always enjoy visiting, Invisibly Me. Our blogger is fairly convincing in how routines can be helpful when dealing with a chronic illness, and gives some great tips on how to boost your routine as well.

And the second is the story of a recent Ph.D. grad, on the blog ErrantScience: Clutter, who moved on to a “regular” (aka, normal 9-5) job and gave a deft comparison of the two. Her conclusion: the grass is always greener on the other side! Somehow, despite all arguments and my own better judgement, I think I will always agree with that!

As for me, during my Ph.D., I recognized that maintaining some amount of routine was critical for pacing. That routine involved allowing my body to “thaw” in the mornings (not rushing it before it was ready), working mainly during my best hours (10 AM to 7 PM), and using the evenings for rest (i.e., not bringing work home). I tried to keep a routine for painting and blogging as well, but that sort of fell by the wayside. Overall, I felt the routine helped me progress towards the Ph.D., while also not working myself too far beyond what my body could handle.

And now that I am done with graduate school, and have no set responsibilities, I feel like I am getting a whole lot of nothing done! I was planning on keeping up with my blog and painting better, studying for some technical licenses, finishing up my leftover papers from grad school – and of all that, I am only making very slow progress on that last one (and probably only because there’s a deadline looming for it). I suppose after working long and hard for so many years, I shouldn’t begrudge myself the rest and relaxation. It truly has been lovely to lay down in the afternoon (a time when I often experience an energy slump) and just read for pleasure! But I dislike the way I am being unproductive in all other ways. So clearly, some level of “work structure” is important so I don’t rest away the entire day.

However, I am also the kind of person who feels stifled by too much routine. I feel a bit like the fish in a bowl, bound by structure, doomed to swim round and round. I like a bit of spontaneity, freshness, and interest in my days – and too much routine is just not interesting to me. Not to mention, if I wake up feeling particularly crummy, I like to be able to go in to work late or take the day off, and have the freedom to make up that time in other ways. Losing that kind of autonomy might push me to work through escalating pain, instead of “calling in” and admitting I am sick (I could hear the voice at the other end goingAGAIN?!?!?!“). All in all, I just don’t see pattern working out so well.

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Going Round and Round
(11X14, oil on canvas)

And yet, I do like the feeling of getting work done in a timely manner (which requires some level of structure). Also, my body does usually fare better when it knows what to expect, rather than when it gets pushed in every which direction. Pacing, by its nature, requires a routine, and it has been proven to make life productive and less painful for many a chronic illness warrior.

I guess the bottom-line is that both flexibility and routine are important when dealing with a chronic, unpredictable condition like fibromyalgia. Ideally, I envision a job with a reasonable amount of autonomy, so there is the flexibility to call my hours. But with a job like that, there needs to be sufficient self-discipline to be able to set a routine for myself, so I can get all the work done, but on a pace I can handle and with allocated rest times that I don’t ignore.

I realize that it may be a tall order to find a job like that, where there is a mix of the best of both worlds. Until I get there though, that grass will always be greener on the other side!

Love,

Fibronacci

How I did Graduate School with Fibromyalgia

Earlier this month, I officially graduated with a Ph.D. in molecular genetics.

It is both relieving and terrifying to have graduated, finally having no set obligations. After the months of intense flares that I was able to tame not all that long ago, I have decided to take a break before moving on to another job. Alas, I still have papers to finish in the meantime, and my future to contemplate, so it will be interesting to see how this break turns out!

But now that I have finally graduated, I feel a bit more confident writing this piece, a list of 10 things that helped me do graduate school with fibromyalgia.

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When you feel trapped . . . but know you’re capable of flight

It is sort of a “Part II” of my Reflections on Graduate School, but with more practical information regarding the management of fibromyalgia, so I hope that it helps a few more of us chronic illness fighters navigate through the quagmire of graduate school. And because many of these suggestions apply in general as well, they may as well be my 10 tips for managing fibromyalgia!


1. Prioritize –  With a chronic illness, you may not be able to do everything you would like. So prioritize what needs to be done first, what is most urgent, and do that first. Work your way down the list of less important things (aka, things that can wait till tomorrow). That way, if you run out of your energy aliquot before getting them done, you do not have to push yourself to do it anyway.

2. Get help when needed (undergrads/assistants) – It can often be difficult to admit you need help, and then put forth the effort to train people under you, and supervise their work. But with the right, reliable person, this can be a lifesaver! It takes some work to switch from the “doing”  mode to the “managing/supervising/mentoring” mode, but those are extra skills you have the opportunity to learn! And it is win-win on both sides: your student learns some new stuff, maybe even feels a taste of independent science (depending on their level of experience), and you get to rest your body a bit, while still working your brain!

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How fibromyalgia helped me be a better mentor

3. Make your work area as comfortable as possible – If you spend a lot of time at your desk, it helps to create an ergonomic workstation – which, of course, is a dream on a grad student salary!  So I have a pillow on my high-back office chair (both hand-me-downs), and a heating pad against my back, to help me sit “without” pain. I also have a small box under my desk, and a blanket. The blanket is for the extra chilly-feet days. As for the box, I often put my feet up on it so I can recline, and be comfortable at my desk. I realize it is not necessarily the best posture at all times, but (perhaps unfortunately) in my mind, pain relief trumps all else – and it really feels so good to stretch my legs out comfortably on the box! I also have a TENS therapy unit at work. I am not 100% sold on TENS therapy, and it looks ridiculous to be twitching or jerking if someone walks in, but I’ll try anything when I’m desperate! A friend also let me have an ergoBeads cushion to rest my wrists while typing. I am not frequently wracked with wrist pain, but I am grateful for anything that may prevent it!

4. Seek working solutions for cognitive problems – I am perfectly aware how cognitive dysfunction can get in the way of the smartest of people. Unfortunately, brain fog has struck me at some of the most inopportune times as well. I do not have a solution for every time this happens, but I have written an article before on how to manage brain fog so you retain sufficient brain function on a day-to-day basis. I hope that provides some ideas on this point!

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As any self-respecting scientist will tell you, the solution to brain fog is of course COFFEE! (Do not believe them blindly)

5. Slow down – One way of minimizing brain fog is to slow down and take it at your own pace. I know that in graduate school we are conditioned to feel guilty for slowing down, and not all professors even tolerate it enough to let us continue. I was very lucky by that measure. I had a project that could sit in the freezer overnight (or even a few days) if needed, and a prof who did not kick me out for doing 10 AM to 6.00-7.00 PM days. I am ashamed to admit that for about a year, when I was on physical therapy, I worked part-time (<8 hours) two days a week, though I tried to make it up sometimes over the weekends whenever I could. I don’t think my boss has been too happy about it necessarily, but I have tried to be as efficient as possible during that time, and finished all my responsibilities on time. I feel like slowing down was my #1 key to even continuing in graduate school, though I frequently worried about coming off as “lazy” or “unmotivated.” But the truth is, my motivation to continue doing science is what convinced me to keep the reduced hours. The alternative was to not do it at all. I wrote more about this topic in a previous post whose title says it all I think: Slow and steady stay in the race.

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The sub-conscious can be a good motivator, but try not to let it bully you!

6. Use flexibility well – Flexibility is a double-edged sword. If you are working independently, and do not have an overbearing boss, academia offers more flexibility than any other situation I can imagine. This is great on those really bad days when you absolutely need to stay in bed. Assuming your work can wait (and I realize not all work can), the flexibility means that you can rest now, and just catch up over the weekend, if needed. However, flexibility can also lead one to keep odd hours, or no set schedule at all from one day to the next. This can be problematic as your body does not what to expect when. I feel like keeping a steady routine was really key to me getting a handle on my “new normal”, so use the flexibility graduate school affords with care.

7. Do not procrastinate – The other issue with flexibility is that it becomes really easy to procrastinate! This is usually a bad idea, in my opinion. Almost invariably, as the stress of an approaching deadline builds, I feel my FM symptoms worsen. If at that time, I also need to do a bulk of the work that I hadn’t done before, that robs me of the rest time that my body needs. Also, it is more stressful if you know you have a lot of work to finish in very little time. So if your symptoms react to stress, try not to procrastinate!

8. Sleep well before important days – Lack of sleep or poor sleep often makes everything worse for me! I hurt more, am tired more, and can think less. So if there is an important day – such an exam, meeting or interview – I try to get good sleep the night before! I have found zolpidem (Ambien) to be an excellent aid when all else (hot baths, herbal teas/supplements, etc.) fail.

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The secret to avoiding this vicious cycle is to use flexibility well and not procrastinate! And, of course, treat your body well!

9. Practice and prepare, but be OK with making mistakes – This is as true when you are teaching, as when you may be giving talks and presentations. Despite practicing a lot before my dissertation defense, I fumbled more times during my talk than I would have liked. Though in retrospect, and from the audience’s perspective, it was not such a big deal, it sort of wounded my perfectionist’s soul. And yet, each time, I picked up where I fell, shrugged off a little and moved on. When I have made mistakes while teaching classes, I have admitted it, and then turned it into a learning opportunity. I feel like fibromyalgia has taught me more about being OK with making mistakes than anything else ever – enough so I now call myself a “recovering perfectionist”!

10. Try not to schedule back-to-back classes – This one especially holds if teaching long classes, such as 3-hour-long laboratory courses, when you are on your feet and active the whole time. It is also one of those things where it just depends on the person! If it works better for you to schedule it all on the same day, and just have one miserable day a week, instead of two, then ignore this point. But if you are like me, and that one day casts a shadow over the entire week, then it may not be worth it. I have found it easier to split it up over multiple days, so I am not under too much strain on any one.


Graduate school (in an academic institution, at least) is interesting because you are part employee and part student. So I hope that my management tactics has some relevance not just in graduate school, but school in general as well as the workplace, and not just for fibromyalgia either, but other chronic illnesses as well.

Cheers to all my fellow-fighters!

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.

title_ _Brain-body problem_ - originally published 10_1_2010 - Jorge ___
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

Sparring with my Shadow Selves

I have always been attracted to Jung’s idea of “shadow” selves. They are pieces of you, your personality, which are hidden in your subconscious. Often explored only in dreams or meditative states, one of the primary goals in life (according to Jung) is to acknowledge and “merge” with your shadows to complete you.

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Thoughts are the shadows of our feelings – always darker, emptier and simpler. ~Friedrich Nietzsche

Over the last several years, I have consciously been journeying towards better self-awareness. I have been able to bring to light many demons which previously only lurked in the shadows (though I am sure there continue to be more aspects of me which are hidden deep within somewhere). One obvious outcome of my journey so far is my conscious awareness of the many personalities that all spar amongst themselves to have primary control of my brain.

Since they’re not really in the “shadow” anymore, but not quite “merged” with what I call me either, I’ll call them alternate selves.

Right now, my two dominant alternate selves are (#1) the one who pushes me on to complete the last leg of my Ph.D. and find a job to move on to, and (#2) the one who implores me to slow down and just take a break.

I’d say #1 is usually more often in control than #2, because I identify with its viewpoint as the more rational one. The last semester is expected to be busy and a bit of a whirlwind. I’ve just gotta buckle up for the ride and stick it through, and deal with the consequences later. Self #2 kicks in on the not-so-good days and reminds me what those consequences feel like, why I need to slow down a bit, delay graduation if I need to. Self #1 tells me that is hardly an option now – the balls have already started to roll for an August graduation. Self #2 points out that yes, but it is not 100% official yet! Self #1 is driving me to find jobs, because I still want a career (though maybe not the one I had originally planned on). Self #2 is asking that I give myself a little rest break in between, it will do my body good. Self #1, however, retaliates with the knowledge that if I get too cozy feeling “good,” I will probably never want to go back for a postdoc training, and it will be that much the harder for me to go back to doing any kind of a (semi-)structured job. Of course, self #2 wonders what’s the point of doing anything at all if you’re going to be miserable while engaged in it!

My current compromise is to yield to self #1 in that yes, that graduation in August is probably happening. That means I will have to push through this semester to have the current project completed and submitted for publication within the next couple of months. But, I give in to self #2 in that I will cut myself some slack on how I handle the actual dissertation and not kill myself over it. I have to concur with self #1 that if I take a break now, I will probably never want to return to working the type of jobs I take pride in now. Any physical benefits I reap from the extra rest will probably be nullified by the mental strain I will most definitely be in as I lie around moping over wasting my life and intellect and education. Still, I made a pact with self #2 that if I do not get a job that I feel good about, I will take a break and start searching again next semester instead of just compromising for any ole thing that pays the bills. I am fortunate in that my husband can support me financially for a little while if it comes to that. So despite the financial strain that it will inevitably be, I will keep that as a viable fall-back option.

For now, my refereeing has silenced my two selves into some kind of truce. But I do not see this lasting long. As I take another turn on this roller-coaster ride, I know they will start to bicker again. And there is little I foresee in the immediate future that will contend them both. I guess I’ll just wait in the shadows until quieter times!

Love,

Fibronacci

New Year, New Me – NOT!

I had high hopes for 2017.

I felt that, finally, I was making some real progress. I was busy at the lab – hoping to graduate this summer! – but for the most part, I was handling that well enough. I felt there might be some real hope for me after all. Maybe I was really beginning to see an upswing in my fibro journey!?

But of course, that was not to be.

I was excited about some progress I had made towards taking my art in a more abstract/figurative direction – all in the “new year, new me” vein. But in retrospect, I see dark shadows in the face of my Anima and colors which speak of angst and struggle.

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Anima (8X10, oil on canvas)

With a change in weather, mounting work pressure, lack of adequate rest time, and no physical therapy, I soon found myself in another fibro rut. Except this one is compounded by a resurgence of my depression.

Usually I can attribute my depression to a side-effect of a fibro flare. It is no fun to feel tired and achy all day long; like you’re pushing yourself through a busy work day when you have the flu. And after a few days . . . weeks . . . of it, it really starts to mess with your head. With little time for rest, the body takes a toll on the mind.

A few weeks ago, a feeling of “meaninglessness” overwhelmed me. I just couldn’t see the point of doing the things I do. Like I am just going through the motions like a mindless robot. And I didn’t just feel that way about my research. It was my entire life. I guess I don’t see the point in my existence. What am I really here for? What have I really accomplished? Why do I do the things I do, feel the way I do, think the the thoughts I do?

Please don’t get me wrong. I am not suicidal. Not even close. In fact, if you saw me, you would probably not even know I was depressed.

In true scientist fashion, the problem-solver in me jumped up and tried to find solutions to my “meaninglessness.” The easiest thing to do was find a job I really cared about. I searched high and low for chronic pain researchers who might be able to use my existing training, but without much luck. Now I am just job-hunting everyday, trying my best to only stick with those types of science which really ignite a passion within me. But that kind of passion is hard to feel when I am low. I see problems in everything I find. I see every reason why I might not be a good fit. Though I know that I will have to put in some on-the-job training for certain techniques – and I know I can do it, I already have, and successfully, many times in the past – when I’m depressed, it is hard to feel the confidence to be able to do it in a new, unfamiliar environment. And that lack of confidence is hurting my self-image, and adding to the meaninglessness of my everyday “chores.”

It would help if I knew what would add meaning to my life. It would help to know what I really wanted to do. But I don’t. All I truly want is to feel better. To feel relaxed, carefree and pain-free, like I did on my vacation. I want to take off the heavy chains I feel I am carrying around constantly. I know that nothing I do differently would eradicate this feeling. The “meaninglessness” is a state of mind I am in, and that would pervade any physical or mental activity I engage in.

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Jacob Marley in chains is my analogy for what depression feels like. (Image from “A Christmas Carol” with George C. Scott & Frank Finlay)

As a coping method, I have taught myself to suppress pieces of myself, as needed, so I can continue to function halfway normally in the world. The trick for me is to keep other parts of my brain constantly engaged. Try not to give air-time to the part that is depressed. A “try-not-to-think-about-it” attitude. It actually makes some sense, because this is one case where thinking does not resolve the issue anyway. There is only one caveat to this effort in suppressing the part of me that is depressed and wants nothing to do with the world, turn inward into the mind, and stay there. It requires constantly being on guard! And that is exhausting. But what other choice is there?

My previous experience suggests that “fake it till you make it – and believe in it!” is a reasonable strategy. It has worked in the past (sort of). So I am pushing myself to stay open to new possibilities, brush away any feelings of inadequacy or lack of confidence that crops up. I am trying to keep my job search to fields where I think I could find some satisfaction in, and could contribute without running myself ragged in the course of it. Most of this is running on auto-pilot. Like I am running an automatic algorithm inside my brain to do things for me, because the real system administrator is absent.

I know this phase is temporary. This too shall pass – as it has before. In the meantime, all I can hope is that I programmed my automatic algorithm well enough to keep me on the right track. It has not failed me before (within a reasonable margin of error, of course). And I hope that it will not now.

Love & Hugs,

Fibronacci

The Vacation Ambience

When several of my friends suggested that taking a break from work might do my fibromyalgia some good, I was never quite certain that would be the answer. After a recent vacation to my hometown in India, for the first time, I felt there might be some truth in that!

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For the three weeks that I was visiting my parents, I noticed a sharp decrease in my chronic pain levels. And with some pacing, I was able to retain good energy levels as well, and pack quite a few (not terribly hectic) activities. I cannot stress enough the value of pacing during this trip, and how well it served me!

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However, I think there were several other things at play there to promote my wellness. Perhaps the most important ones were:

(1) Stable weather – not too hot, not too cold, low humidity, and stayed that way!
This was a dream-come-true after the kind of changes we go through constantly where I live now.

(2) Lack of the repetitive actions that I am constantly engaged in at work.

(3) Lack of stress and a general atmosphere of relaxation.

Until about last week, I would have probably swapped the last two on the #2 and #3 spots. But one week back at the work, with all the pipetting and computer work, and I realized just how much my right arm, and right upper back and shoulders are aggravated by the repetitive motions.

Realizing the effect of repetitive strain is also what made me give serious thought to taking some time off, especially after I noticed how much better I continued to feel even after the vacation was over. I am not sure if this break can ever be reality – especially given practical considerations such as the cost of my medication, and the huge financial burden it would be if my husband were to cover the cost of my health insurance as well. Not to mention, the clock starts ticking immediately after one receives their Ph.D. Most grants and many “entry-level” job positions are not available past a certain number of years post receipt of the doctorate degree. So without a productive next few years, I could be stuck between a rock and a hard place in the future, with very few avenues regarding my career. But though an extended break might be a bad professional decision right now, later on down the line, it might make for a great personal care decision, and I am certainly keeping it in mind!

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As for the general atmosphere of relaxation, the beautiful home and garden decorations at my parents’ house played no small part in creating it. The designer, my mother, could probably rival any interior/exterior decorator with her ideas. She really made me feel like I was in a 5-star hotel while simultaneously feeling at home! So for this week’s photo challenge on ambience, I shared a few photos of her garden, throughout the post, which created a lovely “vacation ambience” that made me forget about work in ways I can never do at home. And that kind of lack of stress, I do believe, played a major role in managing my symptoms despite the packed two-and-half weeks I spent at that house. Relaxation truly goes a long way for pain relief!

Gentle hugs,

Fibronacci