Weathering the Daily Struggle

“There’s a lot going on right now.”

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

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

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

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

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

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

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

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

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

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


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

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

Love,

Fibronacci

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Blogmas 2017 Christmas Tag

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

What is your favorite Christmas movie?

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

Charlie_Brown_Christmas

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

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

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

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

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

Link_potion

Do you open your present Christmas Eve or Christmas Morning?

  • Christmas morning.

Have you ever built a ginger bread house?

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

What are you most looking forward to this Christmas season?

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

Any Christmas wishes?

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

Favorite Christmas smell?

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

hot-chocolate

Favorite Christmas meal or treat?

  • Ferrero Rocher

How do you traditionally spend your Christmas day?

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

Do you open stockings first or presents?

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

When do you put up your tree?

  • As soon after Thanksgiving as possible!
Created with Microsoft Fresh Paint
Festivities (digital)

Least favorite part of Christmas?

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

Any unusual traditions during your Christmas?

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

Favorite childhood Christmas memory?

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

Would you like to participate?

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

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

Created with Microsoft Fresh Paint
Ladies of the Light (digital)

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

Love,

Fibronacci

 

What I Learned from my Leap of Faith

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


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

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

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

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

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

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

2. It is impossible for me to be bored.

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

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

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

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

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

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

5. I was ready for a major change.

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


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

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

Love,

Fibronacci

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.

89_Solitude
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!
PhotoFunia Kitty and Frame Regular 2017-11-17 03 47 34
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!

103_The Silver Linings
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.

newinnervoice


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 Glow of a New Hope: Redirecting Career Possibilities as a Scientist with Fibromyalgia

I love painting sunsets.

Aside from the fact that they are simply gorgeous, the glowing light also signifies a lot of hope for me. First, the warm colors in the light of the setting sun has a psychologically uplifting effect. And second, on a more philosophical level, sunsets signify a state of transition, where you are standing at the threshold between the old and the new. A state of liminality. The very nature of the sunset marks the end of an old, and therefore by extension, the beginning of something new! It’s a beautiful close to what once was, and invites you to think of what the future will bring.

Featured image: Twilight’s Last Glow (oil on 6X6 canvas; available)

It was about 7 years ago that I first got into academic research as a career. The field of epigenetics fascinated me: it is the study of the various modifications on our genetic material that fine-tune how the genes actually behave. If you think of the DNA code as just the lyrics to a song, then the epigenetic modifications provide the tune, so you can actually sing the song. I was enthused enough to learn more about the subject so that I joined a research lab that studies the same. Over the next 7 years in that lab, I first completed an undergraduate honors thesis, and then a Ph.D. dissertation.

Epigenetics
A conductor wouldn’t know how to direct the opera with just the libretto (the genes), s/he would also need the accompanying musical notation (the epigenetic marks).

All that time I was on a single-lane, yellow brick road to become a tenured academic professor in Oz. I worked hard since the junior year of undergrad, often working long hours without pay, paying all the seemingly appropriate dues for a supposedly cushy future. But I was devoted to the deity called “science.” I knew the sacrifices I would have to make to reach my goal, and I was ready for it. At the time I felt like that was really what I wanted of my life. And besides, it wouldn’t matter if I did not – I was conditioned to think that that was the only road possible for me after a Ph.D.

Yellow brick road
The yellow brick road to the ivory (emerald?) tower!

So then when I was struck with fibromyalgia, about halfway through graduate school, perhaps you can imagine my state of mind when I felt my dreams had just gone up in smoke. I felt I was now trapped into this very narrow specialized field, educated beyond most jobs, with a medical roadblock in the only credible path to a bright future. In addition, it certainly did not help that my advisor, who had high hopes for me, now thought that I was a lost cause. He had no reasonable advice for me other than to “just deal with it.”

I have now spent upwards of 2 years trying to get out of the dark mindset that my professional life is ruined because I am no longer able to spend 60-80 hours per week working any ol’ time of the day. It has taken a lot of career research, reading other peoples’ experiences of life after academia, and talking to people who were more supportive of my seeking “alternative” routes, to really figure out new possible directions for myself. More than anything else, it has required me to shake off the chains I had put around my own expectations of my future. I had to do some serious soul-searching about what I truly enjoyed about my job, in order to figure out how I could continue engaging in that, in a way that is not so detrimental to my health.

recycled-art
Reimagine the possibilities!

The result has been a liberating feeling that I have a lot more paths to choose from than what I was initially led to believe. I just spent the last year or so considering traditional postdoctoral research appointments, along with “non-traditional” post-Ph.D. options like teaching, as well as jobs in science publishing, government, and clinical laboratories. Some of these are more directly connected with the topic of my graduate training (molecular genetics/epigenetics) than others, but I was not shy about looking into related but different fields like human genetics, environmental health, public health and policy, and forensic science. I even considered options that would require further schooling, such as genetic counseling and molecular epidemiology.

Not all has been bright and sparkly, though, as I sought out new potential directions for myself. I learned that it can be incredibly hard to budge even a tiny bit from your field of specialization, especially after a doctorate. At the same time, I also received enough positive responses to have faith that difficult though it may be, it is not totally impossible! However, it does require you to be honest with yourself about your priorities (both professionally and personally), and keep realistic expectations of your job search. It is possible to carve out a new fork in the road for yourself, but it takes time, perseverance, and a healthy dose of luck.

Despite it not being all glowy, I nonetheless feel like this period of transition after graduate school is like a sunset. It is a time to reminisce about the past as one chapter in my life comes to a close, and to contemplate what new experiences the next one will bring. Nobody knows what tomorrow holds; but for now, as I stand on this threshold, the possibilities are endless!

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, 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!

A Window Into Happiness

I read a beautiful article a few days ago on Crafts, Chronic Illness and Adulting about how happiness is a state of being, and it is our choice to make every day (as much as we can) to seek that happiness within ourselves. I have ruminated much about that elusive state of happiness before, and couldn’t agree more with that attitude.

I feel like happiness is a flame that is burning within us. Sometimes the flame dwindles, gets buried, becomes hard to reach, as daily frustrations take over our minds. It can be especially hard to deal with the everyday when one is also fighting a chronic illness. But in a moment of quiet, it is possible to find that little candle of happiness still burning, underneath all of the tears of anger, sorrow and frustration.

Depression, on the other hand, is the absence of that flame. You can push yourself, just like you push anyway with the pain and fatigue, to do your everyday tasks. You can cover it up with laughs, alcohol, drugs, music, company, whatever you think might make you happy. But really, all of it is to cover up the knowledge that that flame is gone.

I became acutely aware of that as I had to come off some nerve pain medication rather suddenly. The burning in my arms, trigger points, and spinal cord became more insistent, along with my other FM-related woes – but that was expected. What was a little unexpected (and perhaps stupidly so) was the effect it had on my mental health. I felt a return of my depression and anxiety like I haven’t felt in a decade.

Then funnily enough, I saw the light (again) on one of my absolute worst days. My muscle spasms were so bad in my upper back that I was largely immobilized from neck up, and I could only move my right arm with intense stabs of pain with each movement. Yet, I had promised to bring my friend’s daughter to the circus, and I did not want to cancel on an 8-year-old. So I doused myself in every pain relief method at my disposal, and I went.

Despite all my pain, the joy that emanated from the child at her first circus took precedence over all my misery. I feel like she not only stopped me that day from delving deeper into the hole that I was in, but she actually pulled me a little bit out of it!

That night was one of the worst nights I ever spent. I was practically paralyzed from the pain, and the only reason I did not go to the emergency room is because it would have caused me more pain to get there than just languish in bed.

Silver Lining_framed
The Silver Linings (5X7, oil on canvas)

And yet, that night I was able to find a little bit of the happiness spark, like the flickers of light from a flint, as if a caveman was trying to start a fire. It was like the first dim light that touches the earth after the darkest part of the night. As if from the ashes, a phoenix was trying to emerge!

That flame then grew stronger a day or so later.

I had spent another night in intense pain, so much so, that my husband said I moaned aloud in my sleep anytime he turned, or even touched the bed. He fed me a pain pill, and then spent the rest of the night on the couch to minimize my discomfort. I did not learn of this until the morning, and was filled with so much gratitude when I did.

As I learned that day, gratitude is a like a breath of air on a little spark, a little blow of oxygen that can stoke the happiness flame, and help it realize its potential as a bright source of light.

Although you don’t need much to be happy, on the darkest of days, it helps to remind yourself of all that you do have to be happy about.

I have much to be happy about. I have a husband who is made of the stuff of dreams, I finally have access to my nerve pain medicine again, my pain is slowly getting better (progressively fewer screams have been heard by my neighbors over the last couple of days), and I have a very understanding doctor. Not to mention the friend who trusts me with her children, on whom I can shower my adoration as if they were my grandchildren, and with whom I can connect and find tender joy.

Yes, I also have many challenges that I am going through right now, but I have a lot more to be grateful for. To be happy for.

So today, now that I have the choice, I will try to focus on the silver linings when I look at the clouds from my window. And by doing so, I hope that window opens into another dimension, one where the flame of happiness continually glows bright within me.

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, 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!

Working with a Chronic Illness: Flexibility vs. Structure and Routine

In my last post about how I did graduate school with fibromyalgia, I touched on a point about being careful with how flexible a “job” grad school can be, which has its plusses, but can also be a double-edged sword.

This was not the first time that I thought long and hard about what kind of a job would be better when leading a life with a chronic illness: one that is very flexible, or one that has a more structured routine.

There are lots of “pros” to a flexible job, like that of an academic professor or a lab director. You don’t have to be up too early, can rest in the middle of the day, and take time off for flares as needed. But there are “cons” too: you end up working odd hours, and the body often doesn’t know what to expect when. Not absolutely having to do something now, also means it is easier to put it off for later – and the ephemeral “later” may turn out to be a worse time than “now.” This has the potential to cause much stress, which can be a trigger for a fibro flare.

With a more structured job, days are better-planned, and there is a chance to settle into a reasonable routine, and perhaps reduce the frequency of flares with better pacing. But when flares do occur, it is harder to take time off. The other downside is that constant working during the day, and the pressure to stick to the routine, can get tough on the body, especially if you’re prone to fatigue.

On that note, I read two very poignant articles. The first is a great piece on the importance of routine, on a blog I always enjoy visiting, Invisibly Me. Our blogger is fairly convincing in how routines can be helpful when dealing with a chronic illness, and gives some great tips on how to boost your routine as well.

And the second is the story of a recent Ph.D. grad, on the blog ErrantScience: Clutter, who moved on to a “regular” (aka, normal 9-5) job and gave a deft comparison of the two. Her conclusion: the grass is always greener on the other side! Somehow, despite all arguments and my own better judgement, I think I will always agree with that!

As for me, during my Ph.D., I recognized that maintaining some amount of routine was critical for pacing. That routine involved allowing my body to “thaw” in the mornings (not rushing it before it was ready), working mainly during my best hours (10 AM to 7 PM), and using the evenings for rest (i.e., not bringing work home). I tried to keep a routine for painting and blogging as well, but that sort of fell by the wayside. Overall, I felt the routine helped me progress towards the Ph.D., while also not working myself too far beyond what my body could handle.

And now that I am done with graduate school, and have no set responsibilities, I feel like I am getting a whole lot of nothing done! I was planning on keeping up with my blog and painting better, studying for some technical licenses, finishing up my leftover papers from grad school – and of all that, I am only making very slow progress on that last one (and probably only because there’s a deadline looming for it). I suppose after working long and hard for so many years, I shouldn’t begrudge myself the rest and relaxation. It truly has been lovely to lay down in the afternoon (a time when I often experience an energy slump) and just read for pleasure! But I dislike the way I am being unproductive in all other ways. So clearly, some level of “work structure” is important so I don’t rest away the entire day.

However, I am also the kind of person who feels stifled by too much routine. I feel a bit like the fish in a bowl, bound by structure, doomed to swim round and round. I like a bit of spontaneity, freshness, and interest in my days – and too much routine is just not interesting to me. Not to mention, if I wake up feeling particularly crummy, I like to be able to go in to work late or take the day off, and have the freedom to make up that time in other ways. Losing that kind of autonomy might push me to work through escalating pain, instead of “calling in” and admitting I am sick (I could hear the voice at the other end goingAGAIN?!?!?!“). All in all, I just don’t see pattern working out so well.

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Going Round and Round
(11X14, oil on canvas)

And yet, I do like the feeling of getting work done in a timely manner (which requires some level of structure). Also, my body does usually fare better when it knows what to expect, rather than when it gets pushed in every which direction. Pacing, by its nature, requires a routine, and it has been proven to make life productive and less painful for many a chronic illness warrior.

I guess the bottom-line is that both flexibility and routine are important when dealing with a chronic, unpredictable condition like fibromyalgia. Ideally, I envision a job with a reasonable amount of autonomy, so there is the flexibility to call my hours. But with a job like that, there needs to be sufficient self-discipline to be able to set a routine for myself, so I can get all the work done, but on a pace I can handle and with allocated rest times that I don’t ignore.

I realize that it may be a tall order to find a job like that, where there is a mix of the best of both worlds. Until I get there though, that grass will always be greener on the other side!

Love,

Fibronacci

How I did Graduate School with Fibromyalgia

Earlier this month, I officially graduated with a Ph.D. in molecular genetics.

It is both relieving and terrifying to have graduated, finally having no set obligations. After the months of intense flares that I was able to tame not all that long ago, I have decided to take a break before moving on to another job. Alas, I still have papers to finish in the meantime, and my future to contemplate, so it will be interesting to see how this break turns out!

But now that I have finally graduated, I feel a bit more confident writing this piece, a list of 10 things that helped me do graduate school with fibromyalgia.

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When you feel trapped . . . but know you’re capable of flight

It is sort of a “Part II” of my Reflections on Graduate School, but with more practical information regarding the management of fibromyalgia, so I hope that it helps a few more of us chronic illness fighters navigate through the quagmire of graduate school. And because many of these suggestions apply in general as well, they may as well be my 10 tips for managing fibromyalgia!


1. Prioritize –  With a chronic illness, you may not be able to do everything you would like. So prioritize what needs to be done first, what is most urgent, and do that first. Work your way down the list of less important things (aka, things that can wait till tomorrow). That way, if you run out of your energy aliquot before getting them done, you do not have to push yourself to do it anyway.

2. Get help when needed (undergrads/assistants) – It can often be difficult to admit you need help, and then put forth the effort to train people under you, and supervise their work. But with the right, reliable person, this can be a lifesaver! It takes some work to switch from the “doing”  mode to the “managing/supervising/mentoring” mode, but those are extra skills you have the opportunity to learn! And it is win-win on both sides: your student learns some new stuff, maybe even feels a taste of independent science (depending on their level of experience), and you get to rest your body a bit, while still working your brain!

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How fibromyalgia helped me be a better mentor

3. Make your work area as comfortable as possible – If you spend a lot of time at your desk, it helps to create an ergonomic workstation – which, of course, is a dream on a grad student salary!  So I have a pillow on my high-back office chair (both hand-me-downs), and a heating pad against my back, to help me sit “without” pain. I also have a small box under my desk, and a blanket. The blanket is for the extra chilly-feet days. As for the box, I often put my feet up on it so I can recline, and be comfortable at my desk. I realize it is not necessarily the best posture at all times, but (perhaps unfortunately) in my mind, pain relief trumps all else – and it really feels so good to stretch my legs out comfortably on the box! I also have a TENS therapy unit at work. I am not 100% sold on TENS therapy, and it looks ridiculous to be twitching or jerking if someone walks in, but I’ll try anything when I’m desperate! A friend also let me have an ergoBeads cushion to rest my wrists while typing. I am not frequently wracked with wrist pain, but I am grateful for anything that may prevent it!

4. Seek working solutions for cognitive problems – I am perfectly aware how cognitive dysfunction can get in the way of the smartest of people. Unfortunately, brain fog has struck me at some of the most inopportune times as well. I do not have a solution for every time this happens, but I have written an article before on how to manage brain fog so you retain sufficient brain function on a day-to-day basis. I hope that provides some ideas on this point!

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As any self-respecting scientist will tell you, the solution to brain fog is of course COFFEE! (Do not believe them blindly)

5. Slow down – One way of minimizing brain fog is to slow down and take it at your own pace. I know that in graduate school we are conditioned to feel guilty for slowing down, and not all professors even tolerate it enough to let us continue. I was very lucky by that measure. I had a project that could sit in the freezer overnight (or even a few days) if needed, and a prof who did not kick me out for doing 10 AM to 6.00-7.00 PM days. I am ashamed to admit that for about a year, when I was on physical therapy, I worked part-time (<8 hours) two days a week, though I tried to make it up sometimes over the weekends whenever I could. I don’t think my boss has been too happy about it necessarily, but I have tried to be as efficient as possible during that time, and finished all my responsibilities on time. I feel like slowing down was my #1 key to even continuing in graduate school, though I frequently worried about coming off as “lazy” or “unmotivated.” But the truth is, my motivation to continue doing science is what convinced me to keep the reduced hours. The alternative was to not do it at all. I wrote more about this topic in a previous post whose title says it all I think: Slow and steady stay in the race.

title_ _Brain-body problem_ - originally published 10_1_2010 - Jorge ___
The sub-conscious can be a good motivator, but try not to let it bully you!

6. Use flexibility well – Flexibility is a double-edged sword. If you are working independently, and do not have an overbearing boss, academia offers more flexibility than any other situation I can imagine. This is great on those really bad days when you absolutely need to stay in bed. Assuming your work can wait (and I realize not all work can), the flexibility means that you can rest now, and just catch up over the weekend, if needed. However, flexibility can also lead one to keep odd hours, or no set schedule at all from one day to the next. This can be problematic as your body does not what to expect when. I feel like keeping a steady routine was really key to me getting a handle on my “new normal”, so use the flexibility graduate school affords with care.

7. Do not procrastinate – The other issue with flexibility is that it becomes really easy to procrastinate! This is usually a bad idea, in my opinion. Almost invariably, as the stress of an approaching deadline builds, I feel my FM symptoms worsen. If at that time, I also need to do a bulk of the work that I hadn’t done before, that robs me of the rest time that my body needs. Also, it is more stressful if you know you have a lot of work to finish in very little time. So if your symptoms react to stress, try not to procrastinate!

8. Sleep well before important days – Lack of sleep or poor sleep often makes everything worse for me! I hurt more, am tired more, and can think less. So if there is an important day – such an exam, meeting or interview – I try to get good sleep the night before! I have found zolpidem (Ambien) to be an excellent aid when all else (hot baths, herbal teas/supplements, etc.) fail.

Sleep
The secret to avoiding this vicious cycle is to use flexibility well and not procrastinate! And, of course, treat your body well!

9. Practice and prepare, but be OK with making mistakes – This is as true when you are teaching, as when you may be giving talks and presentations. Despite practicing a lot before my dissertation defense, I fumbled more times during my talk than I would have liked. Though in retrospect, and from the audience’s perspective, it was not such a big deal, it sort of wounded my perfectionist’s soul. And yet, each time, I picked up where I fell, shrugged off a little and moved on. When I have made mistakes while teaching classes, I have admitted it, and then turned it into a learning opportunity. I feel like fibromyalgia has taught me more about being OK with making mistakes than anything else ever – enough so I now call myself a “recovering perfectionist”!

10. Try not to schedule back-to-back classes – This one especially holds if teaching long classes, such as 3-hour-long laboratory courses, when you are on your feet and active the whole time. It is also one of those things where it just depends on the person! If it works better for you to schedule it all on the same day, and just have one miserable day a week, instead of two, then ignore this point. But if you are like me, and that one day casts a shadow over the entire week, then it may not be worth it. I have found it easier to split it up over multiple days, so I am not under too much strain on any one.


Graduate school (in an academic institution, at least) is interesting because you are part employee and part student. So I hope that my management tactics has some relevance not just in graduate school, but school in general as well as the workplace, and not just for fibromyalgia either, but other chronic illnesses as well.

Cheers to all my fellow-fighters!

Love,

Fibronacci

Fighting the Denial of a Chronic Illness

I had initially intended my last article to be the final chapter in the Acceptance series of posts. However, recently a friend asked me a very poignant question borne of that post, which prompted this one. It is sort of an extension on my last post on “how to seek acceptance,” in answer to her question:

How do you fight the denial that creeps up even you mentally decide that acceptance in the best way forward?

In my best attempt at a response, I thought I would share my story, with more personal details than the previous one, about how I fought denial while in search of acceptance.

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The convoluted path to acceptance

If you’re a frequent reader of this blog, you probably know that I used to be a very ambitious, go-getter type of person. I worked hard, and for the most part, enjoyed working hard because I enjoyed my work! The body was just a vehicle to get me about, nothing that needed any tremendous amount of attention. The idea of “listening to the body” was fairly foreign, it sounded “whiny” to me, like a hypochondriac. And this attitude meant I landed myself in frequent flares because I would ignore my body and what it was trying to say to me.

My avoidance of what the body was trying to tell me was not without reason. I felt like if I were to listen to it, I would never do anything, because I was always tired and achy and never really wanted to do anything at all! Every morning was a struggle just to rise and dress for work (and it kind of is even now). Mind over body, I kept telling myself, however. I just needed to will myself into breaking through the chronic illness mode. But the walls proved harder than I expected. And I almost always lost that battle.

body-mind

It took me a lot of soul searching to realize that listening to my body is not being beholden solely to its desires.

I was afraid the latter would trap me into the “this is all that is possible” box, and I would not be able to see opportunities outside the box, even if they beckoned at me. I refused to accept all that my body felt or felt possible of it, but I realized that I needed to hear what it said. Then I could evaluate it in my mind, and decide on the best course of action. Mind and body needed to go hand in hand, not fight against each other. The mind still rules, but uses the body’s counsel, as it were.

And that, in a nutshell, is the essence of what “acceptance” has meant for me: Listen to the body; push it but without pushing it over the edge. The mind is still the king, the one who ultimately decides what to do, but one who uses the queen’s (body’s) guidance and counsel. It does not have to always do what the queen wants, but the mind-king must keep the queen-body in the back of his mind so as to not offend her. This idea of acceptance is distinct from “denial,” where the mind rules entirely by itself; and far from “resignation,” where the chronically ill body calls all the shots.

What convinced me to finally embrace this meaning of acceptance (and quit denying my body all of the time) were three pointed realizations, that I arrived at through many months of soul searching and internal dialogues:

1. The first thing I realized is that my old state is not coming back – and certainly not if I keep fighting myself like this!

Educating myself about FM and chronic fatigue helped me the most to come to this realization. Current understanding suggests that these are disorders of central sensitization. A maestro from hell, the brain and nerves in a fibromyalgiac have become so good at shooting off pain signals that they overreact to every perceived stimulus by doing just that. Fatigue and sleep quality are believed to linked to similar pathways, thus making us feel tired all the time (as if just fighting the pain wasn’t tiring enough!). The upshot of learning the science behind the condition was the recognition that fighting my body, and in turn having more pain because of it, is only setting me up for long term failure. The more practice the nervous system gets at sending pain signals, the better it is ever going to get at it by strengthening all those overactive pain-response pathways even more. Therefore, in relieving my body of as many perceived pain signals as possible, like allowing myself to rest as needed, I am really doing myself a favor. Perhaps, in time, it might even allow the brain a chance to “cool off” its pain response a bit.

'Slow down - you'll live longer,'
The wisdom of a snail

If you are curious to learn more about central sensitization, check out this video in the blog Sunlight in Winter, whose author does a beautiful job of spreading awareness for the science behind the syndrome in patient-understandable knowledge.

2. The knowledge of the science behind central sensitization made me realize that I needed a truce with my body. And the said truce is my only hope of getting my life back.

It may not be the life I had initially planned, but if I didn’t make some kind of peace with my disorder, I would not have any kind of life at all! Getting this through my thick skull was a huge step towards acceptance for me.

This truce was not giving in to the disease, or resigning away to the illness, but simply making a conscious decision to listen to my body more. Like most things in life, it is of course easier said than done. I have struggled with it off and on, along with my faith that this is the sensible thing to do, and I am still in the process of learning how to listen well.

As a scientist, I am quite used to observing the outside word, our experimental universes. But rarely do we use ourselves as the subjects, while also trying to be the objective observer of ourselves! I have found that it can be quite difficult at first, and really easy to slip up on even after doing it for a while. But what has probably helped me the most to detach and observe myself in as unbiased a way as possible is mindfulness meditation. I have trained myself to keep a piece of me in my head to keep a watch over myself, my thoughts and my body. Sometimes this watchkeeper may bring to my attention my negative train of thought, or at others, remind me to relax my shoulders and fix my posture.

Created with Microsoft Fresh Paint
Mind and body must work together to find peace

Many of my blog posts emanate from me tapping into this watchkeeper to see what she has observed, and then the posts are the results of my analysis on those observations. She has given me many insights into my thoughts and feelings, especially on the more unpleasant aspects of dealing with a chronic illness. I am not a believer in wishing negative thoughts and feelings away (I know from experience they don’t go anywhere, they just fester under the surface). So I decided to work through them by writing/blogging. Aside from being cathartic, I have also come to greatly appreciate the support of others in the chronic illness community, especially those of us who are also young, and face that additional stigma of “oh-but-you’re-so-young,-how-could-you-possibly-be-sick.” Being around others with similar conditions and associated feelings, and being able to share in their challenges validated my own.

Through my blogging experience, I also realized that being surrounded by accepting people also promotes acceptance in one’s own heart. You see that a chronic illness does not have to be the end of the world, that it is possible to fight it without killing yourself (metaphorically) in the process, and that there can be a life after chronic illness. I think all of these factors played a part in my being able to fight the denial that kept creeping up from time to time.

3. As I slowly came to terms with the idea of acceptance, I realized that not everything about my new life with FM was bad.

It’s just that the benefits in my new life aren’t always the things that are thought very highly of in our fast-paced modern society. For example, I am now a much calmer person, more patient than I used to be. But that permanently changed how my boss views me, because in academia if you’re not a highly ambitious overachiever, you might as well be nothing. But in my personal life, or even my professional life (as a teacher and a mentor), I realize the patience that I have gained has served me well. I feel, overall, more balanced in many ways than before, when I lived a lopsided workaholic world all the time. I have been able to reconnect with my husband, and feel a measure of mental peace that I never knew could be possible.

This recognition, that it’s not been all bad since FM struck, was a major leap forward towards accepting my my chronic condition.

25_Forest Through the Trees-II
Seeing the forest through the trees . . .

These three major realizations, mostly arrived at through internal deliberations, were my stepping stones to a point where I could stop kidding myself that the chronic illness doesn’t exist, or that I can somehow “wish it away.” Once I had these down, the activities I described in my last post helped me work through my thoughts and feelings (many of the ones I have talked about here), which helped me inch closer every day towards embracing acceptance.

Acceptance of a chronic illness, however, is a very private matter, and can mean something different to each sufferer. So I, by no means, wish to suggest that this is a fool-proof how-to guide that should work for everyone. This is just my story. It is my hope that reading this story might trigger thoughts in someone else in a similar boat, so that they can make their own journey, taking their own private paths, towards their own personal goal of acceptance. In there, lies my satisfaction as a chronic illness blogger.

Gentle hugs,

Fibronacci

 

MORE IN THE ACCEPTANCE SERIES:
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

 

READ MORE ON ACCEPTANCE AND HAPPINESS:
On Acceptance and Healing
What does it mean to be chronically ill and happy?

Seeking a State of Acceptance

The journey towards acceptance of a chronic illness is a long one, with shifting goalposts, and an uncertain finish line. It takes strength and persistence to overcome the loss of a life that could have been, and embrace a new one. All of us who have been battling chronic illnesses are full of stories of how we conquer it everyday to find our center of gravity and come to terms with a difficult situation.

In the last few weeks, I have deliberated much on how I have come to accept that a chronic illness invades my body. Yet, in accepting the illness, I have not allowed it consume me, refusing to give in to a “fibromyalgiac” identity. It may be one of my identities, but I am made of so much more that FM cannot extinguish within me! Accepting that dichotomy within me has been key in being able to nurture my health as well as my other interests that make up the rest of me.

To wrap up my Acceptance series of articles, then, today I talk about what helped me achieve a state of acceptance on some consistent basis, and some of the things that helped me embrace my new life with fibromyalgia.

Twinkle_3
The bridge to a life of color is hidden in the collage of our minds

1. Education: It can be hard to accept a strange, unfamiliar diagnosis as the illness that we suffer from. Therefore once I had a name, a diagnosis, I could look up, I tried to learn as much as possible about my condition. As a scientist, I was already trained in reading primary literature. So I hit the medical journals, and sought out the latest, most definitive research on fibromyalgia, in an effort to know all there is know about the condition. This helped me make sense of the myriad symptoms of fibromyalgia, which in turn informed the problem-solving approach that is central to my definition of acceptance. It also helped me feel less crazy, and like I had more of a ground to stand on against the “doubters.”

2. Writing/Blogging: It is difficult to accept a relatively rare condition when you feel all alone, dealing with it by yourself, surrounded by people who think you should probably just be able to suck it up. The graduate school environment, in particular, promotes stoicism, which is likely to encourage you to deny anything is wrong at all. This, of course, is a recipe for disaster. Through my blog, I have been able to make friends who share similar struggles, whom I can learn from and support in return, and around whom I can allow myself to admit my “true” state of being. Out here in the blogosphere, I do not have to pretend to be OK when I am really not. I have also found writing to be a cathartic experience in itself. It helps me sort my thoughts out, make sense of what is going on in my head, and create a journal of experiences that occasionally helps me see how far I have come. The blog creates a space which encourages me to acknowledge the struggles that come with the illness, and find ways to overcome them – both of which are, again, central to my definition of acceptance.

3. Focusing on something other than myself: Over time, this has taken various forms, such as helping other people, and immersing myself in a process, such as art or science or writing. It makes me feel connected with something bigger than myself (e.g. art, humanity, learning), which then helps me feel like there is a place for me in this world, even with my illness and all. Especially in helping other people, I find I am able to cultivate more compassion, not only towards others but also towards myself. It refocuses attention away from myself, so my own problems do not consume me. Also, it helps me see that many others have similar or worse problems than my own. In recognizing that, I have felt less alone, less self pity, and more self-compassion. Altogether, it has helped me place myself and my problems in perspective, which in turn has aided in accepting the new life that I have been dealt.

4. Meditation: I have had particular success with two types of meditation: (1) Mindfulness; and (2) Visual Imagery. Each in its own way has helped to bring a kind of clarity in my mind, without which it would have been really difficult for me to deal with my condition. Meditation helped me detach from myself at times, focus and break through the pain on others, so that together, they have provided some perspective on my new life and its new issues. It helped me see my problems as tractable ones, and promoted a kind of adaptiveness, that I believe is key to being able to accept any new (and less than welcome) situation.

5. Seeking the many levels of my mind: We all have the capability of living many levels in our heads. We are, in one sense, our thoughts, which are akin to a film playing on a movie screen. In observing our thoughts, we watch this film. And in being able to change our thoughts, we play the part of the one controlling the projector who determines what film to play. Through cultivating mindfulness into my life, I have come to identify with many parts of myself. There is one part of me that is in pain, another who is observing me experiencing the pain, a third who is controlling what I think or feel regarding the pain, so on and so forth. This exercise has been instrumental in me being able to identify myself as being more just than my illness, which was crucial for me to be able to accept my problems without feeling resigned towards them.

In tandem with each other, these five “activities” really helped me come to terms with the battle with a chronic illness. They helped me make sense of what I was feeling physically and emotionally. In being able to see my problems in perspective, and as tractable, manageable issues, I felt I could give myself permission to accept that indeed the problems existed, and that I am not giving up the fight by accepting their existence. Indeed, by acknowledging my chronic condition, and its associated limitations, I am finally opening myself up to finding new ways of overcoming those limitations.

All in all, being able to accept my current life has brought with it a level of internal peace and happiness that was missing from my life before. I know that happiness and acceptance have very personal meanings for each person dealing with their own situation. Even so, I hope that my musings can help somebody, who is struggling and is in search of peace, trigger some thoughts of their on these issues, which helps them find their version of peace they seek.

Love,

Fibronacci

 

MORE IN THE ACCEPTANCE SERIES:
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

 

READ MORE ON ACCEPTANCE AND HAPPINESS:
On Acceptance and Healing
What does it mean to be chronically ill and happy?