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

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

Dealing with Disappointment

Chronic illnesses bring with them a slew of disappointments, big and small. While it seems against the whole “stay positive” theme to admit that, ignoring disappointment under the guise of “positivity” is a bit like hiding an infected wound under a bandage — it may look clean and tidy on the outside, but it’s still festering inside. Therefore, we all need tactics to deal with those disappointments — actually treat that infected wound with antimicrobials — and do it with a positive attitude!

This past week, my physical state has led to some definite disappointments. I was down with a fibromyalgia flare and recurrent migraines for the entire week. It was one of those weeks where I was barely up from one assault before the next one knocked me back down. Each time I was expecting to feel better, and each time I was disappointed.

First came the piercing pain, the nausea, the occipital and trigeminal neuralgia, over several days. As the migraine abortives dulled those, other symptoms asserted in its place: a worsening of the gnawing pain in my legs, neck and back spasms, shooting pains along my spine, burning pains all across my back and arms. For a day or two, it was hard to even dress myself or comb my hair. Then when time and tramadol dulled those a bit, I realized I was in the grip of complete and utter fatigue. I was exhausted to where I was dizzy and eating, at times, was a difficult endeavor. Only by the end of the week did I see a pattern, and realize that I was in for an all-around fibromyalgia flare.

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Based on a similar painting (unknown artist) that was swathed in cool blues and depressing hues, I experimented with some colors to inject HOPE into the scene. (oil on 8X10 canvas; available)

The result was that I missed all week’s worth of pool exercise classes (though I stayed continually optimistic about being able to go). I also missed the once-a-year outdoor art market that was held yesterday. I have no energy to get up to do anything at all, not even a bath. Needless to say I was fairly disappointed. Disappointed that I “wasted” a week in bed, disappointed that I have no energy to pursue my painting aspirations, disappointed to have missed the art market that I was looking forward to for months!

Unfortunately, weeks like this are not uncommon for me. They have caused me much agony in the past. At first, I would push through regardless. Then later, as that stopped being an option, I would be reduced to tears, wondering if my life will now forever be at the mercy of my condition. Then one day I realized that while many things may indeed now be affected by fibromyalgia, one thing I do have some control over is how I react to it. Having sparred with the “dark side” before, I knew I had the power to “unsink” myself. Therefore, in order to keep my chin up while dealing with such disappointments as my own body has proven to be, I developed a few practical tools.


The three main tools in my “coping with disappointment” toolkit are:

1. Finding an alternative that’s equally appealing

One of the most disappointing things about being down with a chronic illness is thinking of all the things you missed. Chief among those last week was the art market I really wanted to go to but really didn’t feel up to. I have also been hoping to start painting more since last weekend, which has not yet happened. So instead, I decided to engage in other painting-related activities that I could do from bed:

  • I worked on my new Etsy shop, listing new paintings on there regularly.
  • I tried creating fancy displays for my paintings with a new app I downloaded, and have been sharing them on my Facebook and Instagram art pages.
  • And last but not the least, I am sharing my artwork through the blog posts I am writing!
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One of the fun painting displays I created using the “Photofunia” app. My painting of the daffodils is titled “A Breath of Sunshine” (oil on 8X10 canvas; available).

There have been other “alternatives” in my toolkit too, like writing/blogging, reading* and marathoning through Stranger Things and Anne with an E.

The result was a week where I was in pain and discomfort (I won’t sugar-coat it), but I kept myself “active” from bed, engaging in things that made me happy! The week was not what I wanted it to be, but it was enjoyable in its own right, making it hard to be too disappointed by it.

2. Listing the recent good times

When dearly-held plans get trashed, when life disappoints you, it is easy to feel like your whole world is nothing but a dark dreary mess. I can’t definitively prove it, but I have it on good authority that time moves slower when you are in pain! So it is no surprise that it feels like the low point lasts forever. But the objective truth is that the sun has not been and will not be behind the clouds forever. It was out once before, and it will be again. And even while it’s hidden, there are some silver linings!

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The Silver Linings (oil on 5X7 canvas; available)

One of the ways I remind myself of this is by listing the good times I have had recently:

  • Mini art vacation last month
  • Haunted house on Halloween
  • Steampunk festival
  • Shopping (for office-wear for my new job)
  • That’s right, I got a new full-time job! It is with the state as an environmental health scientist.

When you list all your fun times like this (even if you were in pain during some those times, or crashed afterwards — which I did), you realize that all is not dark and gloomy with your world. Life is not all that disappointing as it might seem right now.

3. Showing yourself some self-compassion

Whether or not anything in the toolkit helps you feel better, it’s always good to show yourself a bit of compassion regardless. The idea of self-compassion is to treat yourself like you would treat a good friend. Be kind to yourself as you would to a friend.

Self-Compassion Teapot

This one in particular is a work in progress for me. When I feel like I am “wasting” my time in bed, I try to remind myself that resting when I feel down and out is hardly “wasting” time! In fact, it is the only thing to do! I am being more efficient with my time by recharging when needed; if I kept pushing through, I would only prolong the flare and be less productive for longer.

So don’t berate yourself for the rest you need. Try not to begrudge a bit of comfort eating, or the pleasures of binge-watching Netflix shows. Or give yourself time to weep, if you so feel; allow yourself the space to be unhappy. Disappointments lose a lot of their edge after you have just allowed the wave to wash over you like a tide. Every tide eventually ebbs.

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Though I placed a lot of the examples of my tools in context of this past week, all of these work for much bigger disappointments as well — such as the mega-disappointment of dealing with a chronic illness in the first place.

For example, my new job as an environmental health scientist with the state government is one of those “equally exciting alternatives” to my plans in academia! And if I think back to all the years that I was in high school and college, the years I spent doing the science I loved, the time I spent in the company of colleagues and friends I loved, those are some very good times indeed! My life has been worthwhile through storms I have weathered before I developed fibromyalgia, and will continue to be so as I weather this one as well. And as for self-compassion, that’s a worthy attainment regardless of whether you are ill, but especially if you are chronically and invisibly ill. When the world misunderstands and mistreats you, you may be the only one showing yourself some much-needed kindness.

I hope that my toolkit give you ideas to develop your own tools to fight the disappointments that a chronic illness might bestow upon you. And if you’re a veteran chronic illness warrior with some tools of your own, I invite you to share them below so others reaching this blog may benefit from your experiences as well!

Gentle hugs,

Fibronacci

 

*If you’re curious regarding what I am reading at the moment, it is Martha Mason’s autobiography “Breath,” where she talks about how she lived a fulfilling life of over 70 years, ~60 of which were spent in an iron lung following a childhood bout of polio. In fact, the idea for this topic on how I deal with (far lesser) disappointments came from my musings of this book!

 

Each painting has a story, one that I strive to tell here. Since many of them have to do with my journey with fibromyalgia, 20% of all yearly sales income 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 through my Facebook page for more information. Thank you for accompanying me on this journey!

The Joy of Painting

I haven’t talked much about painting or the painting process in this blog, but it has been one of the most important ways I have been able to handle my fibromyalgia diagnosis. There is so much more to painting than what meets the eye. It is not just mixing paints and adding color. As I discovered one day – much to my own surprise – painting is a state of being!

Painting allows me to depict my world and my experiences the way I see it. It gives me the freedom to explore my frame of mind. It is a safe space where I can unleash my pain, sorrow, frustration, anger, confusion, joy and creativity. In the security of the studio, surrounded by the paints and brushes, I have the power to create a physical embodiment of my emotions. Then in choosing to share that piece of my inner world, I allow others to feel a portion of my feelings. It gives me freedom and power to accept, to portray, to share, and with only as much depth and complexity as I would like.

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Spring Snow (8X10, oil on canvas)

What does the painting of the dense woods on a snowy day make you think/feel?

With an illness like fibromyalgia, which has often left me feeling alone and misunderstood, painting has opened up a safe avenue for a dialogue with the world. An emotional painting forces engagement with the viewer. A desperately private person, I feel uneasy opening up my own mind, heart and soul. So my paintings have been a window into my world! I prefer this mode of conversation, in many ways, because I do not have to explain my situation to anyone. An emotional painting does not necessarily force the audience into the artist’s mind. It makes them look into their own, through the prism of their own experiences, and find within them the emotions that the painting embodies or evokes.

I have found security in being able to paint, both as a way of exploration as well as expression. And in a surprising way, that has really helped me deal with the many aspects of my chronic condition.

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

Seize Each Moment

Life has taught me many new lessons since I developed fibromyalgia. Perhaps one of the most important ones is to seize each moment while I still have it. You never know how long a good period will last. Do not put off for tomorrow what you might have the chance to do today.

I do not mean the statement above as a call to action on a good day. I know only too well how that can result in overwork and a subsequent flare. I mean it over a much longer time, sort of taking a bird’s eye view of my life so far.

A heightened pain response and reduced energy quotient with FM has meant that many of the things I used to be able to do are now off-limits. Yet reminiscing about my past abilities do not cause me nearly as much grief, as does the regret over not making better use of my healthy years while I had them!

There were so many things I had always wanted to do! Most of those things did not need to happen right then. They were just hobbies or skills I wanted to develop for fun – like horse-riding, scuba-diving, and many others. None of them made any direct impact on my education or career. So for a long time I put them on the back-burner and focused on school, on building a career, on all the “adult” things that you are supposed to do.

We do that a lot, don’t we? We put off the things that are for pleasure in order to tend to the necessities of the moment. After all, there will always be time for pleasure “later”!

I too felt I could always do those things later – later, when I am more settled, have more free time, and more expendable income. I was young and healthy, and felt time was on my side.

But how utterly wrong I was! 

My first realization of this came a couple of years ago when I got into archery. I enjoyed practicing the stances and getting the form right, more than simply hitting the target (which I was pretty miserable at but felt would improve as my form got better). I never got that far though. Soon, my muscles started to react violently to my drawing and shooting. The fatigue was often debilitating at the end of a practice session. After a few months of struggling through, I was forced to largely give it up.

Since then, the dominoes have continued to fall. I found that sitting astride a horse, even for a few minutes, is quite painful for me now. Hence I am forced to face that any equestrian dreams I may ever have had must now be buried as well. Then there is my long-held dream of scuba diving . . . I can barely even carry my purse for a few hours without my shoulders getting angry with me, so carrying scuba gear feels out of the question at the moment!

The recognition that I may never be able to dive hit me the hardest, because I was finally so close to having the time and the money to do it! Though the schools I looked into were more worried about my asthma – most seemed to not even know what fibromyalgia is – I knew the latter was going to be a much bigger problem for me. Right around the time I started looking into training programs for scuba diving, it seemed like Ms. Fibro stopped being a house guest and had decided to move in for good. It is hard not to feel the unfairness of it when you reach a finish line of sorts, and after you get there, the powers that be decide to move it farther back, somewhere beyond the horizon.

Yet, I feel I cannot give up! I must strive on to the next finish line, wherever that may be! When there feels every reason to just stop in my tracks, I am driven on by hope.

The hope is on many levels for me. On one level, I hope that one day I may still be able to get scuba lessons, or ride horses for short periods of time. On a deeper level, I hope that I can treat my run-in with fibromyalgia as just another bend in the road of my life. I have always hungered for new and varied experiences; so I hope that I can cherish the current one with FM, and learn from it; maybe one day even rise above it.

And for all future dreams and desires, I hope to know better than to think that I will always have the time for them “later.”

I hope to be able to seize each moment I have, and make the most of them, regardless of the moment itself!

Love,

Fibronacci

Overcoming Brain Fog

Going through life with a fuzzy brain can be challenging enough, even when one is not in graduate school! But being in a field where cognition is highly prized, I had to learn fairly quickly how to compensate for the brain-jelly effects of fibromyalgia and its medication.

Featured image: Reclamation (11X14, oil on canvas)

Below are the 5 most helpful brain fog coping skills I have learned.

1) Use your smartphone for lists and reminders : If you find you forget your memory aids (like leaving your grocery list at home), this one is for you! Most of us carry our smartphones with us everywhere, and it is easy enough to make lists, and add events to the calendar on those. They also have handy alarm and reminder features, which is a plus!

What if you have trouble remembering to add the commitment to the calendar on your phone? I find it best to add the event as soon as the appointment is made, before you have a chance to forget!

2) Jot down/verbally repeat key points in a conversation : Any discussion, specially scientific ones, require some level of on-your-feet processing of information for the exchange to be meaningful. When conversations start turning into word soup, I often find it helpful to repeat important points/questions, and/or write them down to help process it in a different way (auditory vs. verbal/written). Having quick notes also means you can think about it later and contribute your insight at a better time.

3) Avoid multi-tasking (if possible) : Multi-tasking requires being able to switch gears from one thing into another fairly seamlessly, which takes more mental capacity than just focusing on one thing at a time. More things happening at the same time means more chances for confusion and making mistakes. But if you must do it, below are two quick tips:

  • Multi-tasking tip #1: Take a short (mental) break between two tasks. This often keeps me from mixing up the details of one activity with those of the other.
  • Multi-tasking tip #2: Keep a plan of what needs to be done for each task. For example, if I am running 2-3 experiments that each take several days to complete, I will write down what needs to be done for each experiment on each day.

4) Use isochronic tones/binaural beats to help focus : I cannot say that I am 100% sure that brainwave entrainment actually works, but it is free and certainly something that is worth a shot! There have been times when beta tones have helped me not get distracted, and delta tones have helped me stay asleep . . . and there have been times when they have done nothing at all! They usually work when I use them for short periods of time, followed by periods of disuse. I suspect if I use it every day for too long, I start ignoring it, and that is why they stop working for me from time to time.

5) TEACHING TIP – Turn brainfarts into teachable moments : In my experience, students typically respond well to your mistakes if you can praise them for being able to spot it, with an appropriate apology, and turn it into a teachable moment. And if you are asked a question you do not know the answer to, it is OK to admit to not knowing it and offer to look it up for them. Alternatively, teach your students to be independent knowledge-builders by showing them how to research (aka, google) their question themselves and find reliable answers.

A lot of the tips above may seem really obvious. But I had to go through some trial and error to figure out what now seems most elementary. So if you are in a spot where you feel forgetful, unfocussed, frazzled or foggy, I hope these tips give you some ideas for how to successfully wade through the murky waters, and be able to achieve more from your day!

Love,

Fibronacci

Discovering Self-Compassion

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?

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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.

Self-Compassion Teapot

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.

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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!

Love,

Fibronacci