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.

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!

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!

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.

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

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!



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.

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!

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.

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.

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.!



On Acceptance and Healing

I read a wonderful article the other day by Rene, author of the blog Periwinkle Pursuits, on what acceptance means to her – and it really made me think: What does it mean for me to accept my pain, my condition?

Accepting a painful event is supposed to be the last of the five stages of grief. So then, I wonder: Is acceptance, perhaps, the first step to healing? I don’t mean healing as in getting rid of your illness in a way that a broken bone eventually heals, but healing in the sense of letting go of the emotional baggage that comes with being chronically ill.

The five stages of grief

I think my idea of acceptance of a condition like fibromyalgia is two-fold:

1. Finding a working relationship between pain and doing the things you enjoy. Since the pain of fibromyalgia is a constant companion, I like the idea of accepting it as one, and doing things despite the pain. However, one also needs to be smart about it and not overdo it!

One example for me is wearing heels. I love wearing heels! They need not be high heels, but even short tiny heels. They make me look good even when I don’t always feel up to it, and gives me that little confidence-boost when I need it. Do I perhaps look silly limping at times with heels on? Yes, I guess I do. I’d limp in flats too. But as my husband once put it: if you’re going to use a mobility aid, you might as well wear those 4-inch heels!

Now would I do it if the pain was unbearable? Errr, no! Or if it caused prolonged severe pain? Definitely not! But in my case, short heels are actually more comfortable than flats. With the occasional high heel, a little extra pain may be worth the look and the confidence injection! But a LOT of extra pain would NOT be worth it.

Another example is me attending a teaching workshop next week that starts bright and early at 8 AM and goes on for 12+ hours (with barely any breaks) for FOUR DAYS. To be honest, I am dreading the brutality of the flare that is going to follow. But I am also very interested in learning more about scientific teaching so I can be a better teacher. So I am really really hoping that the workshop is worth the flare up of my symptoms!

2. Being grateful for the good things the pain/chronic condition has brought into your life. This one took me a while, but I think is very important. I believe that there is a reason things happen to us, though it may not be clear for a while what that is. Every event in our lives is meant to teach us something. The biggest thing fibromyalgia has taught me is to be grateful for the tiniest things each day.

For instance: most people can walk from one place to another without expending much thought to it. I used to be one of those people not so terribly long ago. But now I feel every step I take as I walk, and part of my mind has to be constantly focused on my walking. My breath has to be synchronized with my movements when going up or down the stairs. I call it mindful walking! And I’m grateful for being able to do it. I am grateful for the days when I am just achy instead of crying in painI am grateful for the days when I can go back to work after my aquatic medical exercise sessions, instead of the the fatigue making me bed-ridden. I am grateful for being able to get up in the morning, get dressed, go to work, and live a full day.

Do I believe it is bringing me closer to healing though?

In some ways, yes:

Being able to accept my pain and make changes to my life accordingly has brought me some measure of healing on an emotional level. It has helped me see myself and my goals in new light. I have come to realize that working around my condition is not giving in to it, despite what people say. It has forced me to look for new doors and try to open them as old ones have closed on me. Perhaps even look for a few windows with cracks in them!

But in other ways, probably not. Here’s one example why:

Yesterday at my medical exercise session, I was asked how I felt. I responded, not too bad given the stormy weather. But my old physical therapist (who knew I was sensitive to the weather) noticed I looked awfully drained. I admitted I was tired. So they tried to provide me with some relief by floating me horizontally with one pool noodle under my neck and another under my knees. And I never realized how much pain I was in until I felt it melt away! I told my PT and EP that that was the first bit of pain relief I’d had all day.

That kind of acceptance can be dangerous in many ways! If I accept the pain so much so that I am misjudging its intensity and impact on me, then that could hide other serious conditions that might crop up in the future. But it is hard to know what feels abnormal when you haven’t felt “normal” in ages! So maybe the true healing comes from the next thing fibromyalgia is trying to teach me: MINDFUL ACCEPTANCE!



Life and Death

Lately I’ve been thinking a lot about my life and death. Not in a suicidal or terminal kind of way. Just in more philosophical terms.

Featured image: Guided by the Lights (8X10, oil on canvas)

In many ways, a lot of my old dreams and old personality traits have died a slow ignominious death. At one time, I could see the course of my life from a bird’s eye view. I could see a path ahead of me, and a goal to work towards. I derived a lot of pleasure and satisfaction from my work as a scientist. I was diligent and good at what I did, and was duly appreciated and respected for it. I had a plan chalked out for what I wanted to do after graduate school and never doubted that I would be able to get there. I had non-work related dreams too – like training to be a scuba diver for instance. Now all of those thoughts and plans are buried somewhere under the ground. Perhaps, so is the appreciation and respect that I had once earned, along with a slice of my confidence pie.

Those dead leaves might well be the remnants of my old dreams.

Yet in other ways, I have emerged at the opposite end alive and still mostly kicking (figuratively anyway!). I am having to take my life more one day at a time, which can be stressful when trying to plan a career, but quite nice in other ways. It gives me time to slow down and enjoy what I have today, in this moment, before I start thinking about the future. Even though I have had to steer my life in a different direction mid-stride, I have not let go of all my dreams . . . though I have had to modify them quite a bit. I have learned to be OK with the fact that I may not have a single career goal that I could strive towards. They may have to evolve with time, depending on how my body behaves. I may never be able to get the scuba diving certification, but at least my current life pattern is such that I might have the moment to just enjoy the sight of the ocean with my husband. I am not sure that previously I would have made the time, or that we would have had the connection, to be able to derive pleasure from such simplicity, just from being in each other’s company. With the slow demise of my workaholic uber-independent self is coming the rise of a more balanced person, who is learning to slow down and accept a little help once in a while.

And those bright little flowers, tentatively pointing to the sun, might be my new life.

I don’t think I have yet come to terms fully with letting go of my old life, dreams, abilities, etc. But I recognize that a new me is trying to rise like a phoenix out of the ashes. And I am trying to do things and think thoughts that would encourage its rebirth. I believe that everybody needs to make some of sort of journey during their lives. I suppose this is mine. My chance to die and be reborn into a new person. One day, I might get there. Until then, I thank you all – my readers – for accompanying and supporting me through it.



It’s Not Been All Bad

Dealing with a chronic illness can take up so much energy and command so much of our attention throughout the day that it is easy to get lost in the trees blocking our path. But every now and then, I like to be able to take a step back and look at the forest through the trees, the big picture of my life. . . and then, things don’t seem nearly as bad as they do on a day-to-day basis. So I thought it was high time that I started thinking of some of the better things that fibromyalgia has brought in my life.

Featured painting: Forest Through The Trees-II (16X20, oil on canvas)

Here are my top 5!

1. Ability to notice and be grateful for the tiniest little pleasures in my life.

This is the perhaps the biggest and most important gift that I have been given by a chronic pain condition. Here’s an example that illustrates my point:

A few days ago, I had taken enough tramadol before going to bed that I had little sensation of pain even upon waking. That feeling, of waking without pain, is such a distant memory that, at first, I thought I was dreaming and not really awake! And then it occurred to me that I had woken up most of my life like this – not in pain – and I had never noticed what a pleasure that was; I had taken it completely for granted. Well, not anymore! I can count on one hand the number of days in the last year that I have woken up with practically no pain or stiffness, and I am immensely grateful for each of them.

2. Reconnecting with my husband in a very special way.

I think this is right up there, sharing the #1 spot. For some time now, I have had a difficult time balancing my work with my life, and it took a strong turn of events for me to prioritize him again over all else. I had taken him so much for granted that I had forgotten how special he was to me. My struggle with fibromyalgia has served to bring us closer than we have ever been. He has been my pillar of strength and a rock for me to lean on (both figuratively and literally, I might add) in my roughest times. I cannot begin to express how grateful I am to have him in my life!

3. Realizing that work doesn’t have to be my life.

For the better part of the last half-decade, I have been a bit of a workaholic. A large part of that was because I actually enjoyed my work (and still do), but because I spent so much time working, I was starting to invest too many of my identity-eggs in that one basket. Fibromyalgia forced me to take time off from work and made me realize that I am more than just a biologist; I am more than just my work. My identity as a scientist and a teacher is just one aspect of me, but I have many other interests as well. I also learned to be more flexible with both my commitment to my work, as well as my career choices in the future, knowing that however things turn out, I will still have other identity-eggs in other baskets.

4. Reconnecting with the “other side” of me.

Another consequence of spending a long time working in a left-brain oriented manner was that I was feeling “lefted-out,” i.e. feeling locked in the left side of my brain, incapable of connecting with the more spontaneous, free-flowing, right side of my brain. Pure reasoning is an exercise in frustration when it comes to making sense of chronic pain, especially at a young age. That kind of approach is not conducive to being able to accept the current condition and “roll with it.” As I engaged more in art and meditation, I felt more capable of connecting with the right side of my brain. In doing so, I have been able to feel more whole as a person, and was able to embrace a lot more than what the solely analytical part of my mind could handle.

5. Learning to prioritize and delegate.

iceberg_2Compared to the top 4, this one might seem a small one. In truth, however, “prioritizing and delegating” is just the top of the iceberg. There is much more to it underneath, as depicted in the image to the right, in order for that approach to work. In short, fibromyalgia has taught me more lessons in mentoring than any workshop I have ever attended!

I guess this just goes to show that every cloud does have a silver lining, though sometimes I may have to look for it a little harder. Once I find it though, it brings me much hope and happiness, and often when I need it the most!



Saving Face with a Chronic Illness

Graduate School is full of overachieving people who care a lot about one thing – their research. That, and their perceived image with regards to their ability to face difficulties.

Crying or any expression of disability or needing accommodations to overcome disabilities (aka not always being 100% self-sufficient) is considered “weak” and people who engage in such are often considered as “not being suited for graduate school.” Therefore we are mainly a clan of somewhat anti-social stoics, who bottle up everything, and then get dead drunk to release it. There is some bizarre irony here that a bunch of scientists (biologists, no less) think binge drinking is a better alternative to crying if you want to let it all out!

As much as I recognize the idiotic nature of the culture, I have to admit that, for the most part, I am one of the stoics. I don’t binge drink to release tension, but I am certainly not particularly good at showing emotions either.

I have many faces, figuratively speaking, and I am very careful about what I show to whom. Part of it, I believe, is a trust issue – I have been burned before and I am careful to not get burned again. I find people (including therapists) are often incapable of understanding the complexity of emotion one might feel, and have the tendency to box you into one group or another, without recognizing that no box might truly fit you. I have found this experience frustrating to say the least, and not one I care to keep repeating. To add to this general tendency of the human population, the graduate school environment certainly seems to select for those who are so wrapped up in one thing – their science – that they are incapable of complex human bonding.

This combination of factors made it very difficult for me when I developed fibromyalgia as a Ph.D. student. I found myself fairly isolated and unable to really explain my condition to many people, including my boss, without feeling apologetic for developing a chronic illness. I am the first to admit that it is stupid to feel that way, but I suddenly felt the need to save face by making sure I am extra efficient with my time and trying not to outwardly show what the pain and exhaustion was doing to me.

The latter largely failed after a time when my mobility started declining. So then I turned to humor but still only told the closest people – my boss and immediate colleagues. They have been generally very nice about it, but I still refrain from truly sharing the impact the disease really has on me. Recently, I even talked about it in medical terms with one of my committee members, who was fairly nice and curious to learn more about the disease – I was proud of this because I wouldn’t have been able to have this discussion a year ago, but I didn’t have a choice now as we had to climb stairs and I was slower than this man some thirty years my senior. Yet, we talked about fibromyalgia as one might talk about a badly infected tooth that needs a root canal job.

Nobody can truly understand what it is like to live with a chronic pain condition unless they either have it themselves or know somebody very close who does (a spouse/partner, for instance).

So I continue to be unable to talk about the havoc that fibromyalgia has wrecked in my life, in person, with anybody other than my husband. I don’t expect this to change anytime soon. Yet I know that there are others like me, in grad school even, who are fighting their own chronic battles and they must all feel like me too. It is doing a disservice to them all if I just stay quiet and keep walking like a character in Metropolis. So I met myself halfway and started this blog. I have only shared it with a select few, but this is the start of me sharing my inner universe with the world outside.

Sometimes I wonder if starting this semi-anonymous blog is just another way to save face, to make up for an imaginary mistake that I did not choose to make. But then I think perhaps this is my way of accepting one of my many faces – the face that’s always in the shadow, the one that cannot be easily named, the one that shines only in the dark.

Featured image: Ruby Tuesday (11X14, oil on canvas)



Slow and Steady Stay in the Race

Yesterday, I spent some time meditating and reflecting over the last couple of years of my life. It was brought on by a conscious decision to slow down my pace as the stresses mount on me towards the end of the semester causing a steady decline in my health. Though I sometimes feel guilty or silly for slowing down, I keep telling myself that it is not a crime to put your health before your work, and take a weekend off to recharge. In the long run, I think that will be the key to my finding some level of normalcy in my life. And looking back, I think it already has!

Featured image: Finding Light (9X12, oil on canvas). I could not think of a more appropriate painting that could possibly describe the journey that I write about below.

A year or so ago, when I hadn’t learned to slow down yet, I was super-miserable all the time. Every day I would force myself to rise even though I felt thoroughly unrefreshed. I ignored the stiffness in my body that screamed in pain when I overruled its need for rest and forced it into some clothes and shoes as I made my way to work. Despite the gallons of coffee, every afternoon, I was close to passing out from exhaustion. I would have to crawl my way home before I collapsed to save myself the indignity of passing out at work (which has also happened before). I was on a non-stop roller-coaster ride where I ignored my body to accomplish more things, but then I would hit a new low and not be able to rise from bed for the next few days. I worked my ass off the days I was at work and then wasn’t able to work at all for several days after. I needed at least one sick day every week on average, especially after the days I taught two classes back-to-back, 2-3 hours each. Several times, I thought of quitting everything, wondering if anything was worth it anymore.

Then at one point, I learned better. I don’t know what pushed me over the edge – maybe it was a missed opportunity to attend a conference because I couldn’t get up from bed that day – but I decided to quit that lifestyle. For good. I slowed down. I went to work later than usual, and gave myself time to “thaw” and meditate in the mornings. I cut my work hours down to 6-8 a day (instead of 10-12, at times 15, before). I switched out my chair for a slightly more comfortable one. I accepted the help of a pillow from a friend. I wasn’t shy about using a heating pad at work – which helped a LOT! I got a box and put it under my desk, ahead of my chair, so I had make-shift chair-cum-recliner to help ease the pressure on my legs. Sometimes, I use my electro-therapy machine for a quick massage at work and try not to feel awkward using it. I started taking more weekends off to recharge than I ever did before. I spent more time with my husband, learned to relax more, explore the outdoors, exercise gently and try to be happier outside of work in general. I started thinking about quitting the crazy scientist routine and finding a job I could be happy in (aka, one that is sciencey), but one that would also allow me some guilt-free time off.

This was not an easy change for me. And I would say I am still in a transition state, because I still feel guilty at times about the time I take off from work and feel the need to push myself harder than I should. BUT . . . what I have been able to do so far has already helped! While I still have ups and downs, they are not nearly as dramatic as they used to be. I feel calmer and more grounded in general than I ever did before. While I still feel an energy crash towards the end of the day, I feel the blow of the crash less harshly than before. While afternoons are still rough on me, I now use some tea and meditation to try to calm my body instead of the gallons of coffee I dumped inside me before. And I have fewer days when I feel like I am about to pass out from the exhaustion. I also need to take fewer sick-days off from work now that I work less everyday. In other words, I am starting to find a steady state for myself, that is lower than what it used to be, but it also means I have less far to fall when I do, and I fall less frequently!

From time to time, my old self still pipes up and wants me to speed up and stay rushed in order to win the race. But when I took life so fast, I failed to enjoy the sweet moments along the way. It’s like my surroundings were blurred, and I missed out on enjoying the fruits and flowers by the road-side. And then I hit a point, where I realized that if I didn’t slow down, I wouldn’t even be in the race! Fibromyalgia changed my perspective on life in general. Who cares if I win the race or not? (Why the hell are we running it anyway?) Even if I did win, I was losing so much along the way that was it even worth it? Life with fibromyalgia feels more like a marathon than a sprint. The slow and steady may or may not win the race, but at least they can continue to stay in the race. And maybe, just maybe, that’s more important anyway!



On Ducks and Perspectives

It seems somehow appropriate to discuss my aquatic physical therapy program (sort of, anyway) with a bunch of duck pictures. So here’s one to start it off with!

White Ancona Duck

So because of my aquatic therapy program (twice a week), I am having to miss work a lot. Basically, I am working part time or less two days a week. I feel like I should make up for this by working longer hours or working more over the weekend. But the truth is, even though I am not working on “work” stuff, driving 20 minutes in each direction plus exercising plus showering before and after is all work for me. Those are all eating up slices of my energy pie that I would otherwise devote to work.

Lately, my whole perspective on my work has kind of changed. In the past I used to be perfectly happy working 10-15 hours a day, including most weekends. Last year, when I still hadn’t learned to quit this lifestyle completely, I was always miserable. I slowly cut back and now I feel like I am doing much better in general (fewer massive flares and lower daily pain levels on average). And now, I feel like they don’t pay me nearly enough for me to go back to being the way I was before!! At one time, I may have said I find joy in science. And I still do, don’t get me wrong. But if you asked me the top thing that I find joy in now, I would say it’s in not being in constant misery!

This duck couple (male/female, yin/yang) just makes me think “balance” – that’s what I am still in search of. And then finding peace in living that balanced life minus the guilt!

I never knew how much I took for granted until I wasn’t able to do them as easily one day. Hell, some days I am just grateful for being able to get up and walk to bathroom! But do I still feel guilty about not accomplishing as much as I once used to? Yup. Do I get stressed that one day I might tick my boss off enough that I have to really call it quits? Sometimes. Am I going to kill myself over it? Not physically anyway; I have been convinced that that’s not worth it. The mental anguish, I imagine, will take longer to settle.

Well, there’s that titular perspective for ya! At any rate, I hope you at least enjoyed the (equally titular) ducks!



My Story: Developing Fibromyalgia in Graduate School

How do you go from knowing exactly what you want to not knowing anything at all?

If my life were a movie, that ought to be its tagline! While it’s scarier from the outside than while you’re living it, it’s not all that pleasant either. For all others who have felt similarly, I hope you find some common ground with my story below and feel some unity in numbers.

It all started in the summer, about two years ago, when I started to feel “slowed.” I couldn’t wake up in the morning, I was perpetually tired, sleep did not refresh me and I seemingly lost interest in all things I cared about. I was also in near-constant pain. I put all of that down to being a graduate student. I had practically been a workaholic for nearly four years until I developed a host of bizarre symptoms. I decided I had worked too hard. Visiting my family over the winter would make for a great break, and I would come back from it refreshed and excited again to do science.

But I did not. I was constantly tired even during my vacation, though the pain was somewhat better, thanks to some medication I had acquired for it. It wasn’t much of a vacation for the most part as my grandfather passed away suddenly that winter. It was a traumatic and stressful time for everybody. I had no time to goad over my physical discomfort, even though throughout the time, it kept growing. I had always found a lot of joy in doing science. During that trip, I felt like I had lost all interest in it. Though I dressed it up as feeling a lack of meaning in my work, I should have seen the signs of clinical depression returning on me. Yet I waved it off, and this time I thought – perhaps I will feel fine and everything will return to normal once I get back to the swing of things at work!

Again, I did not. I was worse than ever. I could barely make it work by noon, and needed to rest on couch by three. Extra coffee did nothing to keep me up. I was desperate for help. The fatigue was debilitating. I was developing more tender points in other parts of my body. And I was definitely depressed. So we decided to switch medication, wondering if prolonged use of the previous medicine were partly the cause of my worsening symptoms. That worked like a charm!

During all that time, I was trying to do research, while spending a lot of time at many doctors’ offices. I racked up some thousands of dollars of medical bills for everything my insurance did not pay for. My doctor thought I was exhibiting multiple symptoms of fibromyalgia and we researched together regarding its diagnosis and management. Basically the diagnosis involved ruling everything else out. So we did that – my tests for lupus and RA and all other overlapping disorders came out negative. Long story short, fibromyalgia it was. Good thing too, because I was already being treated for it by then!

Being forever stuck in the “suck-it-up” mentality of stoicism, I tried as much as possible to not let anybody know of what I was going through. Yet people noticed. It is kind of hard not to when someone vibrant and cheery-faced suddenly declines all company and finds it hard to pick anything up or stoop to the bottom shelf or reach up to a higher one. Eventually, I slowly started to tell people – starting with my boss because I felt he deserved an explanation for my sudden change in movement. At first, he was reasonably supportive, but he is a fast-paced, impatient man in general, who had barely been sick a day in his life. And that worried me regarding my prospects in graduate school with fibromyalgia in the long run.

At the same time, I was also getting used to my “new normal.” I resigned to the fact that I am tired every morning, wake up every day in pain, and will probably not make it to work as early as I used to or be able to stay as late as I used to. So I learned to be more efficient to cope with the lesser time I had to spend at work. I resigned to the fact that I will have to be slower, write things down more so it doesn’t get lost in the encroaching fogginess in my brain. This one took more work because I used to be a fast-paced, impatient person, just like my boss in some ways, and did not like slowing down at first and frequently got mad at myself for it. I had to let go of nearly all my social life and started spending weekends at home instead of working at the lab to cope with the exhaustion coming from simply being out of bed. I took up oil painting as art therapy to cope with several aspects of my chronic illness. Most of all, I realized that a postdoc is probably not in the cards for me, and I wasn’t sure I even wanted a career in academia anymore (or that it was worth putting aside my health for) – and that was frightening, because now I had to find out what else I could do.

I’ll try and elaborate on some of the themes mentioned here in later blog posts. But all in all, this is the story of me going off track from the yellow brick road to academia and ending up pretty much lost in the woods. I feel like I went from knowing exactly what I wanted to do, to not knowing anything at all. And it is going to be a long journey of me figuring out where I can go from here, that will be stimulating for my brain and least traumatic for my body, and I am looking forward to what new adventures it will bring.

I’ll end this by noting vehemently that this story is not to seek sympathetic attention. I do not want the reader to feel bad for me. I am too egotistic to consider my life a tragedy – I prefer to think of it as black comedy, and you will often find me making fun of my own pathos. Having said that, I do feel that there are too many quiet voices out there amongst my graduate student friends, all fighting their own battles, and there needs to be more awareness and understanding amongst academics regarding debilities that Ph.D. students face, and not just in their projects! Not every student who is working slow and coming to work at 10 AM is “lazy.” Sentiments like that are, however, very widespread in academia which makes developing a chronic illness in graduate school a harrowing, and sometimes isolating, experience. So the point of this blog is to simply begin a gentle discussion regarding personal struggles of graduate students as they work towards completing a Ph.D. dissertation, through the lens of my own journey; and somewhere along the way, I hope it lends a hand to someone else who might be in a similar boat.