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.

IMG_1602
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).

053
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!

wp_20160116_019
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.

IMG_0704
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.

IMG_0464
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.

IMG_0353
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.

IMG_1602
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.

IMG_0539 (2)
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!

IMG_2022 (3)
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.

058
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.

42_Silent Scream_Munch Tribute
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.

11884582_411391545730917_307704370694550996_o
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

Working with a Chronic Illness: Scientist in Government vs. Academia

As I was getting close to finishing graduate school, I was contemplating many career directions. I liked the flexibility academia offered, but the labor expectations of a postdoctoral appointment made that a difficult option for me with fibromyalgia. So I looked towards private industry (pharmaceuticals, hospitals, genetic testing companies, etc.) as well as science jobs in government. I knew they would be less flexible but also come with a saner work load. And I wrote about my thoughts regarding whether a highly flexible vs. a more routine-oriented job might better for a fibromyalgiac such as I in Part I under this title.

Finally, I chose a job as an environmental health scientist in government. And nearly every day, I thank my lucky stars for getting it! After 3 months of employment, I am absolutely loving my job (except for the hard bits here and there). Like everything, it has its pros and cons over the “standard” post-PhD academic route. And I felt it deserved a fair comparison for other grad students with chronic illnesses who may be considering non-academic options. So here’s my take on “sciencing” in an academic lab vs. on a government computer!

1. I do miss the serious flexibility academia offers.

Working in a relatively respectable position, I actually still have a reasonable degree of flexibility. Nobody would fuss if I came in at 9 one morning, instead of 8.30, or took a slightly longer lunch break, and just made up for it in the evening. But nothing quite offers the extreme flexibility that is unique to academia. It takes time to build up the leave time you need in order to comfortably make doctor’s appointments or other life commitments that may take longer than a couple of hours. Accruing leave at about 1 day per month means having to push through many flares initially, until sufficient leave time is built up.

Academia_0
The sad reality of my flexibility dreams, captured perfectly (as always) by Jorge Cham!

2. I start work earlier, which can be painful (literally and figuratively).

Many of us have our “best hours” later in the day – I certainly do! – and having to start moving too soon before my bones and muscles have had a chance to thaw can be a struggle in the morning. As a senior grad student, I was able to work 10 AM to 6 or 7 PM, because I called my own shots. As a government employee, I feel the earlier hours very sorely on days when it is especially hard for me to get out of bed.

Realistically, however, if I took  a postdoc position, I would not have been able to exercise a 10-to-6 workday anyhow. Most postdocs are expected to work anywhere from 60-80 hours, under an intense amount of pressure. But on days when I am seriously flaring and desperately needing a bed to lay down on, I really miss the ability to work from home or just lay on the couch for 15 minutes while some test tube is incubating.

3. I really like the shorter hours though!

It is much easier to pace yourself when your body knows what to expect from each day. This job definitely offers that regularity of schedule. However, like with any transition, it is taking me a bit of time to find that new pace. Still, coming from an environment where the trade-off for flexibility is working till 1 AM in the morning, it was an interesting experience to leave every afternoon while there’s still some daylight! And now that my husband is all better, I really appreciate all the rest time.

4. You are actually off on government holidays and weekends!

This was a new experience for me too, as I typically worked through all holidays and many weekends as a graduate student (as most academics do). But here, we get several long weekends a year, and you are expected to NOT work during that time! These extra off-days often come right around the time I really start to need an extra rest day, making them very welcome and much appreciated! And I found out long ago, that weekend rest time is absolutely essential for me to continue working period. So it is really nice to have this guilt-free time off!

Academia_1
Not anymore!

The sum of #3 and #4 is that this job comes with a reduced anxiety factor for me.

While I was in academia, I felt like I was always carrying a huge weight of unfulfilled expectations. I knew what I was expected to do, and that I was not able to do it. I was well on my way to completing the Ph.D. and had a history of being a dedicated worker, so I was not kicked out of grad school. But there was always the latent anxiety from knowing you are not quite the grad student your advisor may have hoped for.

Here, I finally felt that weight lifted off my shoulders. My boss is amazing, and she made it clear that I surpassed her expectations. And she is more than happy with what I am doing at the pace that I am doing it in. This has resulted in much reduced anxiety, and had added to my career satisfaction.

5. There is less physical activity as a data scientist than in the lab.

This could go either way. Sitting too long can cause extra pain and stiffness, so it’s good to move around time to time. But for me, the pain in my legs went down (in general) after I took this job! I imagine I must have been overworking them at the lab, likely by standing or walking more than my body could reasonably muster, and I never realized that until I got out of that environment for a while.

6. Government is more slow-moving and bureaucratic than academia.

Which, again, has its pros and cons. You will not publish a lot of papers very quickly, but the ones you do will be meaningful and thoroughly vetted before it even reaches peer review. Instead of publishing just for the sake of it, the idea is more to publish when you have something important or meaningful to say. While the bureaucracy can be irksome at times, it is the same mechanism that allows you rights to fight your position in case of any disagreement with the boss, or say if you need to negotiate special accommodations. In academia, your boss is your master. So if s/he does not agree with you, then other routes are all but blocked for you. Here, there are clearer rules for such things that both employee and employer must abide by, so there isn’t a ridiculous power imbalance.

Academia_2
There is a WHOLE new vocabulary in the “adult” outside world, that I am now learning!

All in all, this job has really been a great boon for me! I am somebody who is environmentally conscious, and actually care about the topic of environmental health. In fact, what I studied before – epigenetics – is closely linked with how the environment can affect our health! It’s just that now, instead of working on the molecular mechanistics of it, I am working on the human aspect of it. Personally, I find that much more rewarding, knowing that my work is reaching people now, instead of just the hope that it might help somebody decades from now!

So if you are a grad student, or a scientist, who is struggling with a chronic illness and looking out for various options, I would recommend staying open to government jobs. In the future, I might even do a short series on how I was able to expand my horizons regarding career options (basically, getting over the fear that my science career was over if I couldn’t make it in academia), and other potential job options for scientists with chronic illnesses. I know I searched high and low for much of this information when I needed it, and sadly, found little of it. So, it is my hope, that these posts might reach others in a similar boat as I, and help them in at least some little way!

Love,

Fibronacci

Hidden Dangers of Chronic Heating Pad Use!

I absolutely detest “click-bait” titles, but this one is really important for those of us who live on a heating pad to manage our pain. So please do read on.


Recently I found some dark lines on my back which had a branched pattern — like veins on a leaf. There were no other symptoms except a slight bit of a burning sensation in the area. However, much of the skin on my back, arms and chest is tender and sore all the time anyway, so I didn’t think much of it.

Turns out, it is most likely a relatively rare condition called Erythema ab igne (EAI), also known as hot water bottle rash or toasted skin syndrome. (Sounds appetizing, eh?) “Erythema” refers to the “redness” of the skin in the area that is due to chronic and prolonged heat exposure (“igne”: fire). This is how this condition starts off, and typically goes unnoticed, until the reticulate (fishnet-like) patterns of hyperpigmentation appear.

EAI
Erythema ab igne (Image from Medscape)

EAI occurs at temperatures that will not burn the skin (~43-47 degrees C) but can cause damage to the skin and the blood vessels immediately underneath it. Historically, it was seen among older people who would sit close to a fire, or among workers exposed to heat on a daily basis (e.g. metalworkers, bakers, etc.). Nowadays, it is mostly seen among  chronic pain patients who repeatedly use heating pads for long periods of time. It is also often seen more in women than men, which I felt is worth mentioning because fibromyalgia also affects more women than men.

The only treatment option is to remove the source of heat immediately. And that is paramount, because while EAI is benign at first, if the offending heat source is not removed, it can progress over time to skin cancer! Just like chronic exposure to UV radiation can result in skin cancer, so can chronic exposure to infrared radiation (more commonly known as heat!).

Lay off the heating pad-1

The logic makes perfect sense, yet it feels like a nasty surprise nonetheless! I have been depending on my heating pad to be able to sit comfortably for some 3 years now. When I extolled its virtues for pain relief, I never knew it was damaging my skin (potentially irreversibly, depending on how far it has progressed).

Needless to say, this news did not make me happy. It feels critically unfair that one of the core pillars in my fibro management scheme is now being taken away from me. It feels like somebody’s idea of a very unfunny joke.

I also want to mention that there is another condition, called livedo reticularis, that looks similar to EAI, but may indicate more serious underlying disorders, such as lupus. But LR seems to typically show up as reddish fishnet-like pattern on the legs (and does not correspond with a patient history of heating pad use). Distinguishing between the two is very important, because one of the treatments for LR is application of heat to the affected area — the one thing you must avoid if it is EAI!

livedo-reticularis
Livedo reticularis (Image from MedicineNet.com)

If you see such marks on your skin, please have it checked out by a doctor, preferably a dermatologist as many primary care physicians are not even aware of EAI. This happened at a really bad time for me, because I need to change my GP with a change in health insurance. (Isn’t healthcare in America a dream?!) I am hoping the next doctor (whom I am yet to find) will take me as seriously and treat me with as much compassion as the last one, and have me properly checked out by relevant specialists.

The bottomline of this post is, if you suffer from chronic pain and heat is a major source of relief, please be judicious when using a heating pad or hot water bottle. There are hidden dangers associated with their chronic use, like the development of EAI, that I had no idea about! I am not sure I can completely give them up yet, but I am definitely cutting back on their use. It does make sitting at work very uncomfortable, but I am horrified by the potential of these lesions turning malignant. If you depend on the heating pad as much as I do, I do hope you will be careful about how long you use it for, so you don’t entirely lose your source of relief in the long run due to EAI.

Love,

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.

Created with Microsoft Fresh Paint
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.

IMG_2022 (3)
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.

Created with Microsoft Fresh Paint
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.

Sleep_PHDcomics

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.

ATP_overdrawn

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:

IMG_2001 (2)
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.

Created with Microsoft Fresh Paint
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.

Created with Microsoft Fresh Paint
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

13 Tips to Simplify Daily Living with a Chronic Illness

Every day can be a struggle with a chronic illness. Even when my husband helped me with just about everything around the house, there were very few days when I didn’t feel the brunt of fibromyalgia in one way or another. Now, with him out of commission, I am feeling it even more.

I have previously written about how I managed grad school with fibromyalgia. And I am using many of the same strategies at my current job. But I have had to “rediscover” some tips to manage the daily chores in a way that eases my growing pain and fatigue now that I have to hold up the fort at home as well.

I have shared them here, hoping they may reach someone who might benefit from them.


In general:

1. Don’t be proud. (If living like a college student is a complete deal breaker for you, you might as well stop reading now!) Seriously though, many a time, it is our pride and expectations of how we should appear, how our house should look, how holidays should be conducted, that make life more difficult for us than they need to be. Try to let go of the allure of appearances, and worrying about how it looks to the neighbors. Focus only on what you need to do to get some semblance of your life back.

2. Prioritize. Start with doing the things that absolutely need doing that day (if that garbage is starting to stink, taking it out needs to be near the top of the list!). Jokes apart, with this general strategy, if you run out of energy before you finish your list, you can stop without too much concern. Let those less important things wait. Trust me, they’ll be waiting for you tomorrow. Unless your fairy godmother steps in and turns some mice into fairy-housekeepers who magically take care of the remaining chores for you! (If that happens, please give them my number!)

3. It’s OK to put off the optional activities if there’s only room for the mandatory. Sometimes the optional activities are the fun “me-time” things, like our hobbies. If so, consider replacing them with equally fun “non-activities” (binge watching Netflix, for example) that help you relax and find peace in a chaotic day. However, if you can move around some less important tasks to make room for that “me-time” activity, don’t pass up the chance!


Groceries and Meals

4. Frozen meat and vegetables. If you enjoy cooking, doing large batches once a week and freezing meals is a great idea. But, that does add to other “intensive” weekend chores, and may not be the right fit for everyone (certainly isn’t for a non-cook like me). So, I turn to frozen chicken, sausage, fish and vegetables. Many of them can be prepared within minutes in the oven, microwave or on stove-top, and they are really hard to mess up! With some careful label reading, portion control and balancing with other food groups, this is not a terribly unhealthy option either.

5. Snack healthy with fruits and nuts. This is easy for me because I love both, but they really are an excellent source of nutrients and perfect for between-meal snacking!

6. Meal delivery services (e.g. Uber Eats). When all else fails, and you simply haven’t the energy to do one more thing, meal delivery services can prevent you from starving. If available where you live, Uber Eats (or other delivery options) can be a life saver!

7. Online groceries. Several places like WalMart and Amazon (Amazon Fresh & Prime Pantry) are now allowing you to buy groceries online, and either picking them up at the store or delivering to your home. It cuts out much of the walking, reaching, bending, standing, etc. that can make grocery shopping hard on spoonies. I think Amazon is kind of expensive for this service, but I feel I am actually saving money buying a list of things I need online at WalMart and having them load the bags into my car at the store. It reduces impulsive buying because I just saw something cool at the store. Rather a neat “plus” for an already useful service!

8. Use wheels to transport groceries. A folding bag or basket on wheels (something like this, for example) can be very helpful so you don’t have to carry a heavy load of bags from your car to the home. It’s a bit more awkward to use if you have stairs to climb, but there are some “stair climbing” options too, like this one.


Hosting & Housekeeping

9. If hosting is too much trouble, take your friends out to eat. Don’t feel obligated to deal with the cleaning, decorations, table and meal preparations, and the subsequent clean-up, if that is not your thing and you know it will wipe you out. This also goes for the holidays; find creative alternative solutions so you can still spend quality time with friends and family, without tiring yourself out.

10. Make as few dirty dishes as possible. Don’t be too proud to use paper plates or just eat out of take-out boxes! Soak “adult” dishes/utensils (or use a dishwasher) for easier clean-up that requires less wrist and elbow grease.

11. Reduce frequency of housekeeping tasks. House cleaning once a week, or alternating between rooms and taking it easy might reduce how much energy is spent on a ritual task that can often take more time and energy than we anticipate (and leave us drained and hurting).

12. Focus on functionality over perfection. Practice the science of “good-enough.” That means the house may not be perfectly clean, the corners may remain dusty, actually a lot of things are probably dusty, but at least I can walk across my floor without the dirt and grit sticking to my bare foot! That’s good enough for me! My clothes are not neatly folded (in fact, if they are not hanging, they are lying in a “dump” on a shelf in my closet), but as long as I can still find what I need, I don’t bother fixing up the closet just to make it look pretty. It’s in a state of “working disorder,” which is good enough for me.

13. Break up tasks. If cleaning takes a lot out of you (as it does for me), try breaking up the different tasks on different days. Dust the books and shelves one day, vacuum or mop the other, clean the bathroom on a third. If a particular cleaning job takes more arm-power (cleaning the toilet or bathtub for example), do that on its own day when you take on fewer other intensive chores.


To be completely honest, these tips have not been enough to keep me from sliding into a flare. I have felt my symptoms worsen despite using the strategies above. However, I do feel they have made a difference. When every little bit seems to take a gargantuan effort, any bit of reprieve is appreciated.

I certainly don’t think I could manage to keep on taking care of my home as well as work full time forever, even using all the strategies I write about. But these tips have allowed me to successfully fulfill the temporary needs of my household, without needing to take at least 1-2 days off from work (that I have not even collected yet!) over a complete crash that pins me to the bed. Essentially, they have slowed my decline, and that was about all I could ask for!

So, if you or someone you know is in a similar spot, and is struggling with daily life as a fibromyalgiac, I hope these tips help them too — at least a little anyway. And if you are a fellow chronic illness warrior with more daily living tips of your own, I invite you to share them in the comments below, so others can benefit from them too!

Gentle hugs,

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