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.
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!
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.
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!
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!
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.
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.
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.
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.
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.
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!
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.
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.
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!
My husband and I both value our solitude immensely. Being amongst the hustle-and-bustle of the city for too long causes us considerable anxiety. This is more so true of my husband, who would be a monk or a hermit if he could! As for me, I am something of an “empath” and an “HSP – highly sensitive person“. Thoughts, emotions and auras of places and people can affect me deeply. There is also some discussion about at least some HSPs being more sensitive to pain. Hence, finding a way to balance our need for inner peace (which, in turn, can affect FM severity) with being able to practically function in the world is crucial for us. One of the ways we do that is by “turning off” once in a while, and getting away from people and their vibes.
So for the photo challenge this week, I thought I’d share pictures of one of the places around town where we often go for some peace and solitude.
Ironically, these photos are actually taken around a lake that is very close to my husband’s place of work.
It’s called the Capitol Lake, because it is right by the State Capitol – smack in the heart of the seat of the state government!
And precisely for that reason, it is almost completely empty on the weekends. After all, who wants to hang around work and a bunch of government buildings on their days off?
Of course, that clears the way for my husband and me to enjoy many a quiet day in these beautiful surroundings, and regain our sense of internal balance!
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!
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!
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!
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!
Where the mind is without fear and the head is held high
Where knowledge is free
Where the world has not been broken up into fragments
By narrow domestic walls
Where words come out from the depth of truth
Where tireless striving stretches its arms towards perfection
Where the clear stream of reason has not lost its way
Into the dreary desert sand of dead habit
Where the mind is led forward by thee
Into ever-widening thought and action
Into that heaven of freedom, my Father, let my country awake.
As the cost of education keeps rising in my home institution and other places, as more and more people seem to be engulfed by fear and paranoia in the world, as reason and truth become buried in a world driven by emotional lies and materialism, and as a fibromyalgiac who feels she has lost her place in the world – this poem rings true to me on so many levels!
One day, I hope to awake in that heaven of freedom as well – freedom from the pain, the fatigue, the expectations of me as an academic, as a person battling chronic pain, freedom from the traps my own brain sets for me when I am in the throws of anxiety and depression – and I hope to awake into being a more balanced, wholesome person.
As a scientistsuffering from a poorly understood condition and as a patientfrustrated by its unpredictability, I have spent many miserable days and nights wondering about the many idiosyncrasies of fibromyalgia. On sleepless nights, the patient in me has a conversation such as below with the scientist in me:
Patient: Why does bad weather (actually, a change in temperature/pressure in any direction) make my symptoms worse?
Scientist: Do humans have atmospheric sensors in their body like some animals? How does that signaling work to affect pain perception?
Patient: Why does the pain get worse during my periods?
Scientist: What is the connection between hormonal levels and pain signaling?
Patient: Why does the pain get worse at night, right when I am trying to sleep?
Scientist: Is there any connection between the circadian rhythm and pain sensitivity/signaling? If so, what is it?
Patient: I wish I could sleep . . . I am so tired . . . (poor sleep makes pain and fatigue worse)
Scientist: Is there a feedback loop between the circadian rhythm and pain sensitivity? Why do patients with fibromyalgia experience alpha intrusions and not get restful sleep?
And the quintessential:
Patient: Why me?(yes, I know it’s cliche)
Scientist: What causes inter-individual variation in pain sensitivity? What genes are involved in those pathways and how does environment play a role in the development of the chronic illness?
As an epigeneticist (one who studies modifications on genes responsible for fine-tuning their function), that last question is especially close to my heart. I have a suspicion that a significant fraction of the population is probably born with genes that make them sensitive to pain perception. But only 2-4% of the U.S. population has fibromyalgia. So what factors are involved in determining who with the disposition actually develops the condition?
These are just questions for now. I have no answers for most (if not all) of them. But we need to find the answers. The more answers we have, the better we can treat ourselves, future patients, and perhaps even take preventative steps. So until then, perhaps that “why me” question is worth asking after all!
A few days ago, I wrote a contemplative post, wondering how much I might be catastrophizing my own pain and giving it more attention than it needed. Ironically, I was in some intense pain when I wrote that after being advised repeatedly to use mind over body and ignore the pain.
Yesterday, I was in the same spot again, but ultimately broke down and took my pain medication. A few hours later, I noticed that it had taken the edge off the pain. It was now down to a level I could live with. And it was then that it hit me! I am already using all kinds of mind over body tactics to keep myself active and moving and involved with life. If it is only after taking the “emergency pain pill” and extra muscle relaxers that the pain is down to a manageable level – not gone, mind you – then how much worse must it have been before?
I would never treat anybody else in that kind of pain with as much insensitivity as I treated myself. So why did I treat myself like that? I would never disbelieve another person if they expressed that much pain. I would never ask them to just not pay attention to it or act like they are making it out to be worse than it truly is. So why did I disbelieve my own pain and wonder if I am catastrophizing?
I think part of the reason is that, as a scientist, I am loathed to take subjective data at face value. And pain levels are just that! Even so, I feel like I often view my own situation with objective lenses from time to time, so there is no real reason for me to invalidate subjective data coming from myself. There is no prior evidence of me acting like a baby or engaging in extended pity fests. If anything, I am always extra tough on myself. And now, my naturally harsh inner critic seems to have internalized things others say or views of chronic pain patients that the society holds, and is belittling me for admitting when the pain gets out of hand. And as an objective observer of myself, I can see that this is akin to re-victimizing the victim for an event they could not control.
As a person who has counseled child abuse and domestic violence victims, I couldn’t dream of saying anything that would make their pain feel invalidated. I have always encouraged them to admit their own anguish – if only to themselves – so they can work through it. And I must treat myself the same way.
In many ways, I feel the pain has robbed me of my youth, my dreams, my spontaneous adventurous nature. And that kind of pain and anguish is difficult to ignore. Both physically and emotionally. And I need to be OK with admitting that to myself. Not suppress it or call myself a whiney-baby for feeling it. I wouldn’t say that to a friend, if we had swapped places. So why should I say it to myself?
Ultimately, nobody can know my body as well as I do. So I need to take a stand for it when it needs me to. If I wouldn’t doubt the validity of a friend’s complaints who was in my place, I shouldn’t doubt my body’s either. I need to turn off the inner critic and take care of myself as I would a dear friend. I have never listened to “society” or “other people” when I have cared for or counseled my friends in difficult positions. And I shouldn’t allow society or people to influence how I treat myself either.
It has been a long journey for me, discovering self-compassion. I started it a long time ago when caring for my inner child overcoming various unpleasant repressed memories. I may have gone off-track for a while. But I am grateful for the turn of events that has brought me back!