Reimagining your Professional Identity as a Scientist with Chronic Illness – Part III

First, let me start by apologizing for dropping the ball on Part III of this series. I haven’t been doing very well this last month amid high levels of exertion and stress, which inevitably led to higher levels of pain, fatigue, brain fog and malaise. None of that was conducive to sensible writing, so I decided to try and wait it out. Irony of ironies, I finally write the final segment today, when I feel largely bed-bound from a crash! Such is life I suppose.

To recap just a bit (since it’s been a while), this series has been about sharing a roadmap that helped me reimagine where I can take my career after I realized academia might not work out for me. It led me to do some serious introspection about why I loved doing what I did, and how I could continue, albeit in a different fashion, so I can have the same job satisfaction while doing something different.

In Part I, I shared my story of how I had to first get over the guilt of letting so many people down (including myself in some ways), and leaving so many unfulfilled expectations in my wake (including my own). This process made me realize that before you can dream of something different, you have to first allow yourself to dream that dream, and be OK with all the uncertainties that come with major change. That was Step #1.

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Allow yourself to fly free

Once I was OK within myself with making a major career change, I had to somehow figure out where to go with that. Which direction should I go in if I walk away from the ivory tower?

In Part II, I discussed the 3 core steps (Steps #2-4) designed to help me figure out:

  1. What is it exactly about my current job that I love doing?
  2. What are the skills from my current job that I can apply elsewhere?
  3. What do my interests (#1) and choice of skills I chose to master (#2) tell me about my personality?

From here on, then, it was about figuring out the directions I could take my skills in, based on my interests and general personality traits, so I can continue to feel the same core enjoyment in my work.

Step 5. Choosing potential career paths

I would recommend thinking as wildly and broadly as possible at first. Think of every potentially related field that strikes your fancy, and where you think you can use at least some of your skills (even if the job requires other skills you don’t have yet). And then limit those options later if they fail the “reality check” (Step #6).

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Let the sky be your limit

Being one who loves the intellectual, human and communication aspects of science, as well as playing with cool science equipment (“bench work”), my list looked something like this:

  • science writing & communication — I always enjoyed giving science talks and am pretty good with presentations, and enjoy the challenge of simplifying complex materials for easy understanding.
  • science publishing — Slightly different from science writing, in that I was aiming for more assistant-editor or editorial internship type of positions.
  • genetic counseling — I certainly know enough genetics and liked the other idea of working with people to help them. The largely autonomous nature of the position also appealed to me.
  • genetic testing (clinical laboratories) — I could do all kinds of fun “bench work” as a lab personnel, and could eventually work my way up to having my own lab.
  • teaching — I love working with students, and thinking of new ideas on how to teach better.
  • working in pharmaceuticals or biotech firms The idea of doing biomedical research but on a shorter schedule was the main appeal here.
  • crime lab — Another clinical laboratory job, like genetic testing. Fun fact: it was my interest in forensic science that first drove me towards a college degree in Biology!
  • other health-related professions — This is where I was toying with, oh you know, environmental health, where I could use some of skills and interests to directly impact peoples’ lives.

Funny thing, the environmental health/epidemiology job that was my wildest shot is the job I am currently in now (and loving it too)!

So don’t be afraid to think wild and different. But also, notice how everything I wrote above are what attracted me to those career paths. Recognize that reality may be very different!

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Be aware of the shadows in the path you choose

Step 6. Doing a reality check

There are three levels to this reality check:

Reality Check-Level 1. Is the job a practical possibility?

I might love science communication, but if I haven’t already created a portfolio that proves I am good at it, no hiring committee will take my word for it! It takes a license to be able to work in a clinical laboratory, which in turn, takes some studying and shelling out not an insignificant amount of money. It also takes 2-years of schooling, and even more money, to be a genetic counselor. So it’s worth doing some serious thinking at this stage: You may love the job or career path, but is it a practical possibility? Would the job require you to move elsewhere and can you manage without help?

Reality Check-Level 2. Does the job appeal to your personality?

I might love doing the science, like for instance, working on a new kind of cancer drug. But am I OK with the company charging people a ridiculous amount for that drug, if all the while the people at the top making the big bucks, justifying the charges as funding for research? Now, I’ll be the first to admit biomedical research is expensive. And I have nothing against making a profit. But I cannot reconcile myself to science where the primary motivation is profit, and not peoples’ benefit.

You may love the actual job but would be you be happy in the larger environment the job is set in? Does it fit with your personality?

Reality Check-Level 3. Does the job fit with your health care/self care needs?

Spoonies, remember where we started? I left academia because of the expectation that I will work 70 hours a week. My body cannot deal with that kind of exertion. So if the reality of the next job is basically the same, then it cannot be a real solution. This may be the last point in my six-steps to reimagining one’s professional identity, but this is definitely not the least! It is absolutely, the most important, in fact. A successful change of career would be to where you are able to engage in your profession while also taking care of yourself.

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Allow self care to take precedence

It helps to have a list of problems you have with your current job  — things about the job that prevent you engaging in self care or which are triggers for flare ups. And then compare this list to the new potential career option and ask if at least some of those are mitigated. No job will be perfect where you engage in everything you love doing and be able to mitigate all your health issues; it will always be a balancing act. But as long as the scales tip in favor of your health, it is worth further consideration. If you find that it does not, it may be worth considering something else.

All in all, these 6 steps have led me from a career in a biomedical laboratory to one on a computer in public health. Here I am using my data analysis skills and learning new ones in epidemiology. It is not perfect I miss the flexibility of academia but it has other things going for it that I did not have before, such the being able to directly impact people’s health and attitudes. This fits in with the kind of scientist I would like to be; one who uses science to help impact people’s lives for the better. I also enjoy the intellectual challenges that the job poses, being a complete newbie in the field of public health and epidemiology.

While not all my health/self care needs are met, my current job has been an improvement in many ways from the previous one. All in all, I would say I am happy with where my six steps of soul searching has got me. This job has allowed me see that a steady state can exist for me, where work does not eat into my health. And it is indeed practically possible to work as a scientist while also battling a chronic illness.

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Every day brings a new set of possibilities

That last bit I seriously doubted until I worked out my options from Step #5, which was my first glimmer of “real” hope that this might work out after all. I know many spoonies often struggle with where to go if they cannot remain in a profession they identify with, as I did for a long time. This is especially true for grad students (spoonies or not) because we become so specialized and go so deep into our fields that it becomes hard to imagine something different from it. If that is the case, I hope my three-part story here of how I broke the mold helps you think of ways to break your own as well.

As a final note, I would like to add that one need not only look towards paid jobs when reimagining their professional identity. It is entirely possible to engage in your core interests even from unpaid work and hobbies. Either way, I hope that the steps in this series of posts help you take a piece of your life back that your chronic illness may have stolen from you.

Love,

Fibronacci

Reimagining your Professional Identity as a Scientist with Chronic Illness – Part II

Since around the time I was planning my graduation, I had been giving a lot of thought about how I can be a scientist without pushing my body farther than it can realistically go. I was lucky that I could still work and that meant a lot to me. I wanted to keep it that way instead of sending myself down a bad spiral with a workload I could not handle. But I found it terribly hard to extricate myself from the “academic conditioning” that academia is the only way to go for a Ph.D.

From my internal deliberations then, aimed at redefining my professional identity, was born this series of posts. At a time when I felt lost, not seeing a way forward for myself if I did not continue on the path I was already on, this series of steps helped me devise a new direction for myself.

While I hope it will be helpful for other scientists/grad students seeking a path outside of academia as well, this post is not only for them. Too many of us spoonies are forced to relinquish existing careers we cannot handle anymore. I hope this post is also helpful for them who may be wondering where they could possibly go if they quit a job they closely identify with.

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The path “least trodden” is the path forged for oneself by one alone.

In Part I of this series, I discussed Step 1, getting over the guilt of leaving academia, before I could even start thinking about other paths. The guilt was on many levels, but I mostly felt bad about how I was another statistic adding to the list of chronically ill people leaving academic science, instead of standing up to it and perhaps helping to make the road easier for future grad students like me.

But I quickly learned that you cannot educate everybody — even when you talk the science behind your condition to other scientists. I also learned that my first responsibility is to always to myself; I cannot do anything for others if I cannot take care of me first. And if I wanted to continue sciencing, I would have to find a fairer path than the one I was on.

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Allow yourself the freedom to fly free

Once I got that, I was able to move on to the three core steps that helped me figure out where I could take my life after academia.

Step 2. Understanding what you enjoy about your current work

Assuming you enjoy doing what you currently do, figure out what exactly is it about the job that you like. Let’s call these “transferrable interests.

For me, the intellectual aspect of the job was perhaps the most rewarding, followed by the thought that my work might benefit people in some way some day. I also enjoyed the hands-on “bench work,” i.e. all the pipetting, playing with test tubes and chemical solutions, and sticking them in fancy machines that use mind-blowing technology. Regardless of the frustrations inherent in “bench work,” I found joy in the process itself, regardless of the results (though a successful result always added to the joy!). And finally, I enjoyed sharing knowledge with others (through talks/seminars) and helping a new generation find the joy in science (through my role as a teacher).

Figuring out what about your day to day activities bring you happiness is a great place to start, because it lays the foundation for the kinds of jobs to seek. Ideally, you would then look for jobs where you can still engage in as many of these interests as possible.

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Look within to find your own daily source of joy

Step 3. Recognizing what you are good at in what you do

This is the part about “transferrable skills.” Many grad students (including myself) get so absorbed in the day to day workings of the lab, that we start to feel like our skill is the entire package. But if we look at the components of the package, we realize that the individual skills could be applied to other things. For example, nearly all grad students probably have the at least some of the following skills by the time they finish grad school:

  • Creative as well as critical thinking
  • Troubleshooting skills (i.e. ability to figure out what’s wrong and how to fix it)
  • Research skills (i.e. the ability to sift through a haystack to find the needle)
  • Solid argumentation skills (i.e. being able to back up what you say with facts)
  • Ability to clearly communicate verbally and in written medium
  • Ability to communicate to both specialized and non-specialized audiences
  • Experience with Microsoft Office (or equivalent) products, other softwares (e.g. statistical or image manipulation tools), and/or technical skills (e.g. programming)
  • Great organization and project management skills
  • Tenacity to see both short- and long-term projects through to the end, regardless of their complexity

Recognizing the specific things that you are good at helps in two ways: (1) it adds to your confidence that all that time you spent in grad school wasn’t wasted time even if you cannot continue in your planned path; and (2) it helps you start practically looking for where you can now apply your skills, and get paid for doing what you are good at!

Once I overlaid the jobs that that matched both my skills as well as interests, I knew I finally had ball rolling!

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Recognize your own blossoms

Step 4. Realizing what #2 and #3 tell you about you

Understanding your transferrable interests and skills are great, and they might help find job options that sound good on paper — but they alone may not serve you well in finding a new fulfilling job until you understand what your interests and skills tell you about your core values and motivations.

For instance, I would describe myself as a scientist with a heart; who sees science as way of bettering the world and helping humanity. I am not someone who views science as a way of making money or how to snag the next big patent or paper. I am also not a science snob; I enjoy talking science with other scientists and non-scientists alike. More than scientific facts, I lay emphasis on the scientific process, which I like to talk about with people, to help them make informed decisions. But I also recognize that not all things can be done “scientifically;” some things are just based on how you feel, and I don’t discount the validity of that approach, when appropriate, either.

Realizing the motivations that drive our interests and motivate us to master the skill sets that we are good at help to rule out certain jobs that may involve doing the things we like but does not fit with our overall personality.

For example, I could not see myself working in a place where the primary motivation for doing science was profit. (I have nothing against making money, as long as that is not the core goal of the science I am doing.) Knowing this helped me rule out certain options (e.g. the pharmaceutical industry), and helped me draw up a shortlist of potential job options.

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When you find yourself considering an unlikely branch, return to your roots to see if that’s where you belong.

In the third and final segment of this series, I will discuss the last two steps in my process, as I used my reflections to draw up a list of potential career paths and the final considerations I made, especially regarding my health, before moving forward.

But these are the core three steps that I used to actively decondition myself from thinking that academia is all there is for me. Breaking down my job into its component parts and analyzing what it all meant to me helped me realize there may even be potentially better directions for me out there than what academia had to offer!

At all major forks in life, I feel like some introspection is key to helping us overcome the hurdles and find a reasonable solution. But it can feel like we are lost in a sea of confusion when we are faced with losing a career path we closely identified with. In times like that, I hope these steps can help one understand why the job means as much as to them as it does, and then apply those core motivations in a more health-friendly direction. Stay tuned for more on that in the next post.

Love,

Fibronacci

Reimagining your Professional Identity as a Scientist with Chronic Illness – Part I

In my last post, comparing my experience being a scientist in government vs. academia, I had promised to talk a bit about how I got there. Admittedly, it’s a bit surreal to me, because this time last year, I was practically despairing that I might not have any career at all, forget one in science. Having experienced the pressures of academia first hand, I knew it wouldn’t be conducive to my health to continue in it. But it was immensely daunting to seek a life after academia as a scientist with a chronic illness.

In this series of posts, I will discuss my story — it has been a long, and in many ways, is an ongoing journey to redefine my identity. But before I could do anything else, I first had to assuage my feelings of guilt for wanting something different out of my life in the first place.

Step 1. Overcoming feelings of guilt and loss.

Ever since I joined my lab, it was made clear in no uncertain terms that I was being trained for an academic career. From the boss’ point of view, that’s what a graduate program is designed to do. It’s an apprenticeship model, where your mentor trains you in the arts and crafts of the trade, so you carry their mark forward as you grow in the field. That is your job, and your responsibility.

So when my body couldn’t handle double the full-time workload that is expected of the field (I was probably working under 40 hours at the time trying to get my health back in some sort of order), I was immediately relegated to the side. Once a promising student, I was now a waste of time; a wayward kid; a lost cause. And I internalized some of that at first, and felt guilty for letting my advisor down. I knew he had high hopes of me, and I felt guilty for not being able to live up to it.

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Guilt is a fire that scorches the soul

But there was another kind of guilt at play, one that hit at my core. Academia is still a very male-dominated field; I felt I once had the potential and motivation to add to the roster of successful women in academia. But there are even fewer disabled and chronically ill scientists in the field. We can be ostracized at best and actively discriminated against at worst. So we hide our disabilities, afraid to stand up to those who look down upon us for fear of ruining our future prospects.

I felt like I should try to make it as a successful academic scientist, even more so now that I had fibromyalgia, so no one could doubt our scientific acumen! Once at a stable point in my academic career, I could raise awareness for our cause without fear of retaliation; mentor more students with disabilities; try to change the culture in academia that sees us as lesser mortals. I felt like I had the responsibility to stand up to the establishment that had looked down on me. Walking away from it felt like walking away from a battle, like they had defeated me and my spirit. And I felt guilty for giving up on all the future disabled or chronically ill grad students I might have been able to help.

It took me a long a time to see that these feelings of guilt were misplaced. It is my life and my body, and my first responsibility is always to myself. To keep myself healthy, and active, and in a mental state to be able to enjoy life. It is my responsibility to find a fruitful direction for my own life, one that suits my current needs.

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At the edge of all light

To feel beholden to others’ expectations of me is only a noose I held around my own neck. I realized that is never how I lived my life so far, and it would be a mistake to start now. As far as thinking of my own past dreams or future hopes are concerned, they only serve to make me feel worse. They do no practical good in helping me carve a way forward.

I also realized that advocating career over self-care is hardly being a good role model! Especially with a chronic illness like fibromyalgia! How can I help other people if I cannot even help myself? Perhaps my limited energy is best spent raising a candle to the issues from the outside, rather than burning in the fires on the inside. It was time to let go of my misguided sense of pride.

The first step in any journey is often the hardest to take, but also is the most important for it sets you on a new course. Once I was able to get over the feelings of guilt over leaving the career I strove for for so many years, I felt like a fog had just cleared from my view. By the time I graduated, that was perhaps my single biggest accomplishment; bigger, even, that the Ph.D. And when I finally could see the different directions my career could possibly go in, I felt the glow of a new hope warming a heart grown cold and scared.

In the next post(s), I will talk about the specific steps I used to retrain my brain to think of new possibilities and new directions. I know when I was seeking some of this information, I had none I could turn to. So I hope that this series of posts will reach future grad students and scientists in a similar boat, and I hope they find some value in it.

Gentle hugs,

Fibronacci

Weekly Photo Challenge: Out of this World

Seeing a flare to its end (or what I hope is the end anyway) is a feeling truly out of this world!

After being stuck in the tunnel for so long, to finally see some light at the end, is a delightful feeling.

Featured image: Creation, oil on 18X24″ canvas (available)

And yet I struggle with the thought that this is as good as it’s ever going to get. For everyone else, life expands, they incorporate more and more experiences as they move forward. And I am happy if it simply doesn’t contract any more! I move forward too, but always against the wind, and always aware of the limitations.

And yet, as a human being, we register differences in condition more than so than the absolute value of it. This means that despite all the limits placed on me, my instant reaction is one of pure joy, an expansion of consciousness, to realize that I am improving from a worse-off state. That what I am improving to is what most people would consider “lazying” bothers me only when I think about it in more intellectual terms, ignoring my emotional reaction to it.

I realize that my initial happiness is only dampened because I still compare my state to that of other healthy people my age. I compare it to what I used to be at one time, what I remember feeling like but haven’t felt like in a long time. But with a chronic condition like fibromyalgia, my world now spins at a different speed than it does for others my age, than it would have for me if I hadn’t developed this condition. It is not fair to compare apples to oranges.

I have learned to see that slowed spin rate on neutral terms — it has some good and some bad, just like there would have been had my world kept revolving faster. But sometimes I can’t help but feel that the existence of the difference itself is somehow mocking.

At one time, I thought I was closer to accepting my situation. And I was, but only under the circumstances I had grown comfortable in. As my circumstances changed, I realized I am on this journey anew.

Ever reaching for the light . . . thinking I feel its warmth . . . but then my world takes another spin, and I am back in the dim, reaching for the light again.

The painting in the featured image explores many of these emotions that expand through time and space. I am sure everyone has something they are struggling with, where they feel they are locked in a tunnel, and are forever reaching for the light. I think of that when I feel I am fighting an unfair battle, and try to not feel so alone in it. I try to think of the progress I am making, and remind myself to simply breathe.

Perhaps the important thing is not to win the battle, but simply to keep fighting it, and fighting it well. And all the while allowing yourself to feel the joy of small victories, however small they may be, just to feel like it’s not all in vain.

Love,

Fibronacci

 

Each painting has a story, one that I strive to tell here. Since many of them have to do with my journey with fibromyalgia, a fraction of the sales from my paintings will go to the American Fibromyalgia Syndrome Association (AFSA), who fund research into this poorly understood condition. If the paintings and/or the cause touch your heart, as they do mine, please feel free to contact me here or through my Facebook page for more information. Thank you for accompanying me on this journey!

Hitting the Reset Button in my Brain

I feel like the last flare kind of put me in a less-than-positive state of mind. Too many of my posts are talking about hardships of living with a chronic condition. While I don’t mean to shy away from being honest, and I don’t believe in deluding myself with positivity when things could obviously be better, I do believe that our state of mind can affect the state of our bodies. Letting out the frustration of a prolonged flare is helpful, but remaining in that angry, frustrated mode does no one any good.

So I have been on a journey to try and reset my mind to be a in a quieter, more peaceful place. I have had varying levels of success with the strategies I used, and I am sharing my thoughts on them here in case it can help someone else in a similar boat.

1. Take time by the moments instead of days.

The idea here is to just get through this moment in time and on to the next, and not think any further forward or backward. I try to keep busy at work, and ignore my body as much as I can. I have also taken to spending my evenings resting completely (unless I go for my pool exercise class). Sometimes I may play a crossword with my husband. We have fun, we goof off, we laugh when we make up silly words; I seem to relax. Throughout the day, I try to keep my focus mainly on the task at hand.

For the most part, this strategy works. When taking time moment to moment, I seem to be alright.

. . . But then a thought will pop up in my head about the next day that’s about to come, and I feel this dread. Don’t get me wrong, it’s not that I mind my job, I really like it in fact. What I dread is the struggle that going to sleep might prove to be, or the exhaustion when I wake again the next day, or the achiness, the tiredness, the tightness in my muscles that will aggravate me throughout the day. I dread that I will come back home, and rest, and feel better, and then my body will hit its reset button the next morning, and the whole thing will start all over again. Like an endless cycle of rest, pain and exhaustion.

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Emptiness

Taking time in moments stops me from thinking in the fashion above, but it also makes time feel disconnected. I feel like, as people, we thrive on some sort of continuity. That’s why we created the construct of “time” in the first place. When you take life one piece at a time, it is an effective coping mechanism because it gets you through the day. But for me, at some point, every moment seems to run into another, and it becomes hard to see where I have been and where I am going.

So even though this method works, I realized that is like putting a band-aid on wound that needs stitches. It might make you feel better and hide it from sight, but it probably won’t solve the problem. But for problems that can’t be solved, like the one I currently have I guess, this is still a useful strategy.

2. Reframe your mind to think of what you can do.

This one is hard for me because I associate fibromyalgia with so much loss. But I think it is important to note that there is still a lot that I can do that I don’t always think about. I don’t think about it because I expect to be able to do more, so I care less about what I still can. But perhaps I should not take all that for granted.

Perhaps it worth noting that regardless of how bad I felt, I could still take care of my husband after his surgery. I could take care of our home while working at the same time. I can still work! As a scientist, no less! I can still plan for a future, perhaps a house, or a vacation. I am still able to spend some time with friends when I like. None of it is easy, but I am still doing it. Regardless of how much patience I lose with myself, I am still coping with whatever life throws at me.

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I am not just a a face in the crowd – I am still capable of hopes and dreams and accomplishments!

In a weird way, this makes me feel both proud and more confident, and also more humbled. Proud and confident that I am capable on taking on the current challenge. But also more humbled: just because you could do something, doesn’t mean that you should. I feel grateful that I didn’t collapse, only flared, when the workload soared. But at the first chance, I am also cutting back so as to not provoke providence by taking it for granted.

Altogether, I have found this to be a good exercise. When I feel poorly, my list is fairly short. But I try to add every mundane thing I could and try to convince myself to feel accomplished for being able to do it. It helps me feel like I have been somewhere, and can do some things, and can still plan for some kind of future.

3. Accept that it sucks.

Sometimes that’s all you can do. Just accept that this is a bad patch, and ride it out. No point in being angry about it or punishing yourself for what you cannot do. Do what you can to mitigate the flare, but recognize that sometimes it’s like the flu — you just have to wait it out. Admit the feelings and thoughts that invade the mind, find an acceptable outlet for them, and try to redirect them in more positive directions (see #1 and #2 for instance). Show yourself some compassion.

This one, for me, is by far the hardest, though I have been actively coaching myself for a while. I feel like I need to have the answers to all my problems. If I don’t have ready answers, I feel like I need to find them. But sometimes there is no answer. All you can do is accept this is how it is. Funny thing is, when I am able to do it, it brings me so much peace of mind! And yet I struggle with the idea that I am “giving in” to the flare. But it is not: I am still looking for ways to help myself feel better; I am just done fighting the the problem itself. The focus is now on me. Not the flare or the illness itself.

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Peace

I have written extensively about acceptance before, and I will put the links below. It is probably the best way I have found of dealing with the emotional aspects of my condition. As you can see, however, it is not a goal you achieve and stay at. It’s a a never-ending journey on the road to peace.

Gentle hugs,

Fibronacci

 

READ MORE ON ACCEPTANCE:
Part I: A Lesson in Perspective and Acceptance
Part II: What is “Acceptance”?
Part III: How Acceptance can lead to Happiness
Part IV (A): Seeking a State of Acceptance 
Part IV (B): Fighting the Denial of a Chronic Illness

Fibromyalgia is not “just” feeling achy and tired

Word of Warning: This is a rant/life update post that also makes something of a point. Other chronic illness fighters may relate to the point, and I hope “healthy” readers can appreciate it and maybe learn something from it!

So without much adieu, here’s the point, nice and early, so you don’t have to read till the end. Point

As my husband has been known to say, “the point is the point.”

OK, just kidding. No such luck! But if you stare hard enough at it, and then look away, you will see a square. I hope that makes up for the the last 20 seconds of your life reading a bad joke. No money back guarantee for the next 20 seconds if you don’t see the square, though.


For the last month or so, I seem to be hopping between flares. This last one has lasted a few weeks, replete with intractable pain and bone-crushing fatigue that is made worse by lack of sleep. That I come close to passing out unwanted (often at my work desk) but then struggle to sleep at night just feels like an unfunny joke my brain is playing on me.

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Although my husband is much more mobile now, I am still taking care of some house chores. After a full week of work, I was feeling the lack of adequate rest on the weekends for a while. It’s a bit like I kept making automatic payments out of an already overdrawn bank account. Except here we are dealing with the biological currency – ATP – adenine triphosphate, aka, raw naked energy.

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If you’ve ever overdrawn your account, you know the overdraft fees that apply. It’s money that you pay for not having money to pay with in the first place. Well, the Bank of ATP is no charity either. Pushing forth on empty just pushes you deeper into a hole that becomes harder and harder to come out of. That’s where I was when the weather flip-flopped rapidly. Without any energy left in savings to speak of, I went down almost as fast as the barometer.

(In a bizarre way, this flare makes me feel vindicated that I did not just stop partaking in the chores for material pleasure — it actually made physical sense for me to spend the weekends resting, and recharging the battery for the following week.)

Since I also just started my new job, I don’t exactly have an abundance of leave time or bargaining chips (or any really!) accumulated yet. That means I simply have to push through, even as I am struggling to stay sitting up. I am also starting work much earlier these days. That means forcing my body to move before it’s had a chance to thaw, thus using up more energy for the “wake up” routine than it otherwise would.

Kind of like the chicken you didn’t have time to thaw before dinner, and now it’s going to take extra power to cook from frozen.

Which, all, finally brings me to the point of this post:

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And it’s a bloody big one too!
(or as “bloody” and “big” as the 2018 super blue blood moon ever got for me anyway)

All that about counting energy bars used for strenuous activities like “waking”, and struggling to breathe through the pain, and running while practically on empty, is what makes fibromyalgia a little more than just feeling a bit achy and tired.

I know a lot of people get achy when it’s rainy. Nobody likes waking up early after not getting a good night’s sleep. Everybody gets tired from time to time. And I know all of these people still do everything that I do, and maybe a dozen things more, and chalk it all up to “adulting” without a complaint.

So why can’t I? Because fibromyalgia is a bit more than just feeling a tad tired and achy sometimes. It’s feeling like that all the time. And I work through it too without most people even knowing I have a chronic pain condition.

But “achy” is not the same as the band of pain and muscle tightness and spasms that grip my chest and make every breath a struggle. And after having tasted quite a range of the pain menu (joint, muscle and nerve), I can safely say that the Iron Maiden — my most favorite metal and least favorite pain band [yes, the “band” pun was totally intended] — is the absolute pits.

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It’s really amazing how much easier it is to fight the rest of me once I can BREATHE again!

That is a bit different from when someone is sore for a day or two from the weather or an especially hard exercise routine. They don’t have to brace for a major flare from ignored achiness, that might bring on new heights in pain sensation. The ache is the flare. It’s downhill from there.

In a fibro flare, on the other hand, I have been known to want to cry, but the fatigue is so all-encompassing that I realize it will take too much energy to cry. I have to save whatever is left of me to move my limbs and get through the day without passing out. A large part of what makes the flare worse is also poor sleep. What I once described to my doctor as an “all-body migraine” means I cannot get comfortable enough to sleep well, and lack of restful sleep in turn makes both the pain and the fatigue worse; and thence is triggered a vicious cycle.

Sleep
The reasons for staying up may not be the same, but as usual, Jorge Cham got the sentiment of the vicious cycle pretty right in this PHD comic!

Avoiding these kinds of flares that have the potential to floor you become of near-paramount importance in the management of a condition like FM. I have had to restructure my whole life, sometimes struggling to keep up with even the reduced pace, cutting back everywhere and on everything that I can, just to avoid these flares. I imagine people with chronic pain disorders know what I am talking about. But it is very hard to explain this to somebody who doesn’t see the struggle behind the shallow breaths, even when they otherwise know what being in pain feels like. They don’t have to worry about the localized pain turning into an all-over flare that literally affects every part of the body, everything from sore feet to a foggy head.

The centralized nature of this pain disorder also means that I never know where and when to expect an exacerbation of the pain. The back is a constant, so at least I know that’s a house guest who’s staying again today. But who else is coming to visit — and for how long? Is it going to be my arm? The wrist perhaps? Or maybe the knee, or the feet (are the ankles coming too?), or perhaps it’s going to be the thigh? Is the neck pain just from sleeping funny, or is this about to be a killer migraine? And how long will that last?

FMS
A snapshot from a video by open.osmosis.org explaining fibromyalgia as a central sensitization disorder (i.e., stemming from issues in the brain)

The uncertainty and unpredictability of pain due to a central sensitization disorder makes it very hard for people with only peripheral injury-related pain experience to understand or empathize with this kind of “achy”.

If you can expect a pain a certain way, it’s easier to take mitigating steps, which you know will work with some reliability. With centralized pain, you never know what to prepare for. And because you can’t be prepared for everything all the time, you are likely to be sometimes caught off guard. Like I know laying down helps me breathe again when the pain otherwise tightens the vise around my chest, but I cannot lay down at work.

And the fight it takes to keep sitting up when the pain is overpowering takes up more energy that I don’t have. I used to be a high-achieving student, so I know what “tired” feels like. I never dreamed it could be counting how many ATPs it took me to get out of bed this morning! Some days it takes more than others. So you can either plan your day accordingly, or, if you’re fresh out of choices, you go further into overdraft at the Bank of ATP. And then you feel the dire exhaustion that takes “tired” to the next level.

My friend describes it as being like a “zombie”. Well, it’s pretty accurate. I was alive and moving, but all the life juice was taken out of me, and I was just performing the motions. I felt like I might collapse into a bag of bones the minute I didn’t pay explicit attention to allocating the necessary resources to hold my body upright.

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It’s a great exercise in mindfulness — paying attention to holding your body up — but I really don’t recommend it.

All of this constant daily struggling, peppered by knock-out flares, is why fibromyalgia is not just feeling “kinda tired” and “a bit achy” once in a while. That’s why, even when people are not trying to be belittling, I can only sigh when I hear things like, “you’re fine, everybody gets tired”, or “I didn’t feel like waking up this morning either”, or “yeah, this weather’s hard on everyone”. I appreciate that people often mean well, and are trying to be kind when they say those things. I just wish that before they said it, they had a small inkling of what we truly felt like.

Love,

Fibronacci

Weekly Photo Challenge: Silence

Silence is to be able to contemplate the small, the tiny, the insignificant, and find the image of its beauty within yourself.

As much as that sounds like a quote from somebody famously enlightened, that just came from me. And I absolutely refuse to carry on the internet tradition of assigning fake quotes to famous names.

Besides, I truly mean it.

I clicked that photo yesterday, just as the sun was coming up on a rare snowy day in the Deep American South. I was enchanted by that flock of clover sticking up from the snow, like nothing could keep it down. It was intent on being a bright burst of color in the white landscape.

There was nobody else out that early, with the temperature in the frigid lower teens (-10°C, for those unfamiliar with the Fahrenheit scale). It was quiet and beautiful. Peacefully serene. I could hear myself think, and that is always a good feeling.

Yesterday wasn’t a particularly great day for me. The cold and frequent fluctuations in the weather had me achy at best, and spasming at worst. But that moment of tranquility, as the sun came up and reflected its colors on the snow, was one to cherish.

That moment was my own bright burst of color for the day. I could feel its beauty and peace. It was my private escape into silence.

Love,

Fibronacci

Weathering the Daily Struggle

“There’s a lot going on right now.”

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

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

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

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

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

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

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

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

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

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


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

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

Love,

Fibronacci

Blogmas 2017 Christmas Tag

Many, many thanks to Lavender and Levity for tagging me on the Christmas tag this year. My apologies for not being able to get to it on time, but hey, better late than never, right?

What is your favorite Christmas movie?

  • There’s too many, but I am particularly fond of the humor in A Christmas Story, and the sentiment behind A Wonderful Life. Charlie Brown Christmas gets a special mention because I often feel like CB on days when you’re expected to be merry.

Charlie_Brown_Christmas

Do you like to stay in Pajamas or Dress Up for Christmas day?

  • I’m practically always in pajamas unless I have to go out. Then I wear something suitable for wherever I am going. Christmas day is no different.

If you could only buy one person a present this year who would it be and why?

  • I would buy our family the gift of health. The witches better get brewing!

This is perhaps also a good time to explain why my blog has been so neglected past few weeks. My husband ruptured a tendon in his knee a couple of weeks ago, and is now looking forward to at least another month of immobilization in bed. Since he is unable to do anything that requires any mobility (which is just about everything when you come to think of it), I have been taking care of him, our home, as well as the new job. This is quite a role reversal for us – our personal “upside down.” Needless to say, this has not left me feeling the best, but more on this episode later. The point of the story here was to illustrate how we could both use a bit of Link’s magic health potion right about now!

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Do you open your present Christmas Eve or Christmas Morning?

  • Christmas morning.

Have you ever built a ginger bread house?

  • No, but I’ve built a Halloween cookie house! From a kit. Still counts?

What are you most looking forward to this Christmas season?

  • Hmm, I was looking forward to a holiday with friends in New Jersey, but we had to cancel that following my husband’s accident. Now I am most looking forward to him getting better!

Any Christmas wishes?

  • I wish people could take a quiet moment and look inward this Christmas. Self-reflection and finding peace within oneself is so important. I am with the Dalai Lama in that there can be no lasting peace on Earth until people find peace within themselves.

Favorite Christmas smell?

  • Cinnamon and chocolate, or dark chocolate and peppermint. (That they are also popular coffee flavors has never escaped me.)

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Favorite Christmas meal or treat?

  • Ferrero Rocher

How do you traditionally spend your Christmas day?

  • Very little is done “traditionally” over Christmas in recent years because I am never in the same place. I often visit my parents in India during the winter. If I’m there, we repeat a childhood tradition of visiting the nuns at my old grade school (it’s a Catholic school attached to a convent), and bring them presents. There’s a Christmas party we attend at a country club, and receive Christian friends who share delicious fruit cakes with us. If I’m with my husband, we are sometimes traveling on Christmas day, or visiting his parents, sharing some food and exchanging presents. Oh, and simply relaxing watching Christmas movies! Rudolph, Frosty, Christmas Story, Scrooge(s), Polar Express…

Do you open stockings first or presents?

  • As a child, I used to open stockings first because they were closest to the bed. Now I don’t put any stockings up so there’s no competition.

When do you put up your tree?

  • As soon after Thanksgiving as possible!
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Festivities (digital)

Least favorite part of Christmas?

  • Probably how much a day like that comes loaded with behavioral expectations. That scares me because I’m not sure if my mask is bleeding and my anxiety is showing through.

Any unusual traditions during your Christmas?

  • My husband and I enjoy driving around some of the neighborhoods that do pretty lights and decorations over Christmas and looking at peoples’ houses and yards. We do this for Halloween too, and most often they are the same neighborhoods.

Favorite childhood Christmas memory?

  • When I was seven or eight, we were traveling one Christmas Eve by bus, and I was understanding of the fact that there was no way I could get presents that night. Nonetheless, my mother made me hang a stocking which I thought would be pointless. I didn’t really ever believe in Santa, and I knew my parents didn’t have time to buy gifts. But lo and behold! On Christmas morning, I found some ornaments in that stocking!! I was flabbergasted!! I couldn’t get it out of mom how she did it! She kept insisting it was Santa! I figured it out eventually, but for a while that day, I remember wondering if perhaps there truly was Santa!

Would you like to participate?

I am afraid it is a little too late to tag anyone, since this is supposed to be something done by Christmas 2017. But if you see this post, and you think it’s fun, please consider yourself tagged! All you have to do is answer the same questions as I did above. Please leave a link back to my post, so I know about it because I would love to read your responses. And tag your post with #ChristmasCheer on Twitter so we can find each other!

From the questions above, nothing seems Christmas-specific. It could be used for any holiday. So if you like, pick your favorite holiday or the one that means the most to you, and answer the same questions about that day!

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Ladies of the Light (digital)

I sincerely wish that the end of the year brings all my friends much happiness and loads of spoons!

Love,

Fibronacci

 

What I Learned from my Leap of Faith

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


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

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

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

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

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

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

2. It is impossible for me to be bored.

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

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

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

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

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

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

5. I was ready for a major change.

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


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

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

Love,

Fibronacci