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

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

Weekly Photo Challenge: Solitude

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.

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Ironically, these photos are actually taken around a lake that is very close to my husband’s place of work.

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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!

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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?

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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!

Love,

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

Weekly Photo Challenge: Rare

Few things are more rare than snow and ice in the subtropics! But when it happens, the beauty can be breathtaking.

And there’s that thing about beauty – it can hide in the most miniature of things, and bring immense joy when you open your heart and find it!

Love,

Fibronacci

Weekly Photo Challenge: Narrow

Where The Mind Is Without Fear

by Rabindranath Tagore

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.

Love,

Fibronacci

Questions I have for Fibromyalgia

As a scientist suffering from a poorly understood condition and as a patient frustrated 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?

PatientWhy 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?

PatientI wish I could sleep . . . I am so tired . . . (poor sleep makes pain and fatigue worse)

ScientistIs 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!

Love,

Fibronacci