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

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

Contemplating Authenticity

Recently I was speaking with someone about the root causes of fibromyalgia who used to suffer from the condition in the past and studied it as well. She confided in me that she felt like much of the pain and fatigue developed from not living in alignment with one’s true self.

I have to admit that the idea had crossed my mind before as well. Like some part of me might know that I am headed on a road that is ultimately not who I truly am, even though I may not be consciously aware of it. And it is kicking and screaming, trying to get my attention – through the FM symptoms – to get me off that track. It is forcing me to pause, and do some soul-searching to find what it is that I should be doing that is indeed in alignment with my authentic self.

roses_2_signed
What better way to ask about “authenticity” than with a digital painting? Abstract Roses in digital oils

Presumably, once one reconciles their actions with their true identity, the symptoms improve. That is what, I got the impression, she believes happened with her. She also cited life stories of several people she studied with FM – many with high-achiever, goal-oriented personalities and fast-paced lifestyles (stories similar to mine) – who switched career tracks as a result of FM and now are doing much better. Plus they are now much happier.

Of course, one might view the data completely “non-spiritually.” You get ill. You realize your current lifestyle is not conducive to your feeling better. So you make the difficult choice of changing it to something that bodes better with your current state of health. And lo and behold, minus the added stress and pushing past the limits, you start to feel better! This is, of course, the very premise of pacing! And who wouldn’t feel happier if they got off the FM roller-coaster?

While I have nothing against the sort-of spiritual way of thinking about the condition, I cannot but feel like it is a bit too close to the “it’s all in your head” dismissal that so many of us have heard so often. I know, though, that it is not how she meant it. She is well aware of the stigma attached with invisible illnesses. But I still bristle at the thought of how there is so much more open room for interpretation and/or conjecture with conditions like FM, which cannot be tracked to a particular cause (yet), than other illnesses with more definitive causes.

Regardless, I can certainly see the merits of her spiritual way of viewing the world. I imagine it goes a longer way towards promoting acceptance and and sustainable changes in lifestyle than a purely medical train of thought. You may feel less indignant, or like you’ve been dealt an unfair hand, if you think that it is your unconscious mind that is using FM to steer you towards the right path. This way, you might resist less in making the changes necessary for your well-being.

But once one is past that stage, I am afraid that there is a lot this worldview alone cannot fix. It is the same issue that I have with positive thinking. Positive thinking in the form of cognitive behavioral therapy can be beneficial in helping one come to terms with their condition and not make their pain worse due to catastrophizing. But beyond that, no amount of positive thinking can cure FM any more than they can cure a tumor. Likewise, I doubt authentic living could necessarily get rid of my flares due to period or bad weather.

However, none of this is to say that we should not try and make the best of the situation and do some soul-searching. Whether or not it can cure FM, chances are that a balanced, fulfilling life can only really be cultivated if it is in alignment with one’s authentic self.

tulips_2-2
Is it “authentic art” if it only exists in pixel space? Abstract Tulips in Glass Jar (digital oils)

Now more than ever, as I stand at a transition phase, I keep thinking of what kinds of paths would appeal to my true nature. Despite the subject being a recurring motif with me, I have been giving it a lot more thought after developing FM, since I was forced to turn off the auto-pilot and take the gears of life back into my own hands. I do believe that finding and living in accordance with my true self will bring a measure of happiness and inner peace that I often lack now. And if my fibromyalgia improves with it too – well, I’ll just consider that a bonus!

Gentle hugs,

Fibronacci

Overcoming Brain Fog

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

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

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

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

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

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

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

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

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

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

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

Love,

Fibronacci

Divine Retribution

Monday

Summer was officially at an end. I was consumed by a feeling of how little I had accomplished over the last 3-4 months.

I felt I was becoming lazy, and too used to being “comfortable.” Grad students aren’t meant to comfortable! So what if I felt tired? Graduate school is notorious for sleepless nights! Yes I was always achy, but my pain is not that bad! I should be able to push through the tiredness and the pain. Enough with “babying” myself. Mind over body, I told myself. I could do this if I really put my mind to it.

I know this kind of thinking is stupid! But at the time I wasn’t thinking straight:

I spent practically all summer in a never-ending flare, basically at a new sub-normal, and I was frustrated with it. I had just begun to figure out my new normal, but before I could even settle down, I was forced another level down. The pain has been so deep and constant that I often don’t even realize how much pain I have been battling until the shroud lifts for a moment.

My life felt out of balance and I was having to figure everything out anew, and I was tired of it. I was tired of being on the roller-coaster. And in my mental fatigue, I was beginning to doubt myself and my own feelings regarding my health. I was beginning to wonder if it was all in my head, if I was essentially making it up – and if so, maybe I’d be better off just ignoring the assertions my body was making, and eventually I might snap out of it!

I doubt I truly meant to be as cruel to myself as I was. It was a moment of weakness when I gave in to my own personal critic. Left alone, it would have been forgotten in a few weeks as I regained my mental balance. But spiteful words released into the ether rarely dissipate on their own. And this time, they were picked up by the wind and heard by the universe. Loud and clear.

Tuesday-Wednesday

I stuck to my vow to try to push myself just a bit more – I shortened my rest time after PT on Wednesday, and tried to go to work early. I drank more coffee to stave off the sleepiness that almost always engulfs me afterwards. It sort of worked. I was beginning to feel that I could do this!

Wednesday afternoon

I had noticed the traffic was unusually heavy that day. This remained the case the whole afternoon, even when I went to pick up my husband from work. And got even worse as I tried to make my way back to the lab. I was beginning to get seriously achy and tired by now.

This might not sound like much for a normal person, but sitting for long periods of time is extremely painful for me. And when I am driving, it takes up extra pieces of my energy pie in addition to just sitting. And now after exercising and spending several hours on the road, every minute that my foot pressed the brake, I could feel my back breaking. Not to mention, every thing took three times as long because we were moving at snail’s pace!

It was 10 PM when I finally got home. I was now out and about for over 12 hours. Needless to say, I was practically dead.

Thursday

Despite the “resolution,” I decided to take it kindly on myself that morning. I limped into work by noon. My boss must have noticed my tardiness, because he made some snarky comment implying my ineptitude.

Friday

I did not feel too bad most of the day. I thought the extra rest the morning before had done the trick! I drank extra coffee again, and reduced the after-PT rest time so I could go back to work sooner. I thought this was working out pretty OK so far, and I wasn’t really even pushing that much! Essentially, I thought I had gotten away with it!

That night, my husband suggested going out to eat. I did not resist the suggestion at first, but felt very put off by the crowd at a couple of the places we drove past. We settled for Chinese take-out, and got our favorite. After a couple of bites of the “amazing chicken,” it hit me.

I felt a swoon come over me, followed by rush of nausea. I suddenly felt I had sprinted a marathon, and needed to throw up – out of exhaustion – at the finish line. I couldn’t finish eating and needed to lie down immediately.

Yes, I had crashed. I should have known it was coming, but I had thought (hoped!) that I had gotten away with it.

I hadn’t.

Saturday-Sunday

All throughout the weekend, I continued to feel like a train had run over me; and then once the gates lifted, every car that was stopped behind the tracks for a mile, also ran over me one after the other.

For large parts of it, I could barely get up from bed to even use the bathroom. I have no appetite. The fatigue still has me by the throat. I have never had chemotherapy, so I cannot be sure – but I think this must be what chemo-exhaustion feels like.

Divine retribution for my stupid, stupid thinking!

Mind over body is all well and good, but the body always has the last say. The exhaustion that comes with a chronic illness is not like regular tiredness. And the pain of fibromyalgia is not like just getting random aches and pains. One does well to always remember that!

Love,

Fibronacci

Featured painting: Dream Passage (8X10, oil on canvas)

Weekly Photo Challenge: Fun

I know I have shared this painting before in my post about humor for pain management. But it was just too appropriate for this week’s photo challenge theme, so bear with me one more time!

For those who don’t know the story behind this painting, I have described it in detail in my original post (linked above), but here is a short version:

On a recent vacation with my friend’s two young daughters, my husband and the girls decided to play a silly joke on the server by dropping all our spoons in our glasses. The confused look on the server’s face as she tried to gauge the bizarre situation without letting it show in her voice was classic! It was a supremely dumb joke that then became a bit of the tradition with the girls. And since then they have sending us spoons-in-glasses pics from many of the restaurants they now visit.

In order to commemorate the birth of a new dumb tradition, I painted them the picture in the featured image and called it “The In-Joke” (for obvious reasons, since few who weren’t there to witness the event are likely to see the humor in it).

The real reason I wanted to share the painting and the associated story again is this:

I read a beautiful article today on Light Everyday about how we often fail to realize how much fun we are having, all the time, in the course of living our lives, because we get so caught up in the preconceived notions we hold of what “fun” should look like.

At my age, a “fun” vacation is marketed to look either like a luxurious girls-time-out in a beach-side spa resort with a snazzy nightlife, or an adventurous backpacking trip across the mountains at the end of which you are supposed to “find yourself” (whatever that means). Not dropping spoons in glasses with two young children at a tiny diner on a family vacation, as I squirm on the chair to try to ease my pain best I can! Yet that was one of the funnest vacations I have ever been on, and that particular memory is one of my most cherished ever, and one that we keep referring back to every time we eat out!

My current point of view, however, is relatively newly developed. For a long time, in my past life as a healthy person, I was also blinded by what “fun” should look like. And I resented the fact that I never had enough money or the personality to have it!

It is unfortunate that I had to develop a chronic illness to lift that veil off my face and finally see how much fun I was having everyday, just doing everyday things, nothing special or out of the way.

calvin-hobbes-summer-is-doing-things-or-nothing

I have fun every day, just hanging around the house with my husband, sometimes in different rooms with each doing different things, or watching TV shows/films together in bed. Nothing we do looks like “fun” – in fact we might be the definition of “boring” – but it has been a fun life for us in our own way!

Calvin-and-Hobbes-Summer-Vacation-Comic

As I keep coming back to this idea of finding the good things that fibromyalgia has brought into my life, finding joy in small things is definitely one of the big ones! I feel very lucky to have been given the opportunity, even if it came disguised as fibromyalgia, to realize just how much fun my life is!

Love,

Fibronacci

Weekly Photo Challenge: Narrow

Where The Mind Is Without Fear

by Rabindranath Tagore

Where the mind is without fear and the head is held high
Where knowledge is free
Where the world has not been broken up into fragments
By narrow domestic walls
Where words come out from the depth of truth
Where tireless striving stretches its arms towards perfection
Where the clear stream of reason has not lost its way
Into the dreary desert sand of dead habit
Where the mind is led forward by thee
Into ever-widening thought and action
Into that heaven of freedom, my Father, let my country awake.


As the cost of education keeps rising in my home institution and other places, as more and more people seem to be engulfed by fear and paranoia in the world, as reason and truth become buried in a world driven by emotional lies and materialism, and as a fibromyalgiac who feels she has lost her place in the world – this poem rings true to me on so many levels!

One day, I hope to awake in that heaven of freedom as well – freedom from the pain, the fatigue, the expectations of me as an academic, as a person battling chronic pain, freedom from the traps my own brain sets for me when I am in the throws of anxiety and depression – and I hope to awake into being a more balanced, wholesome person.

Love,

Fibronacci

Questions I have for Fibromyalgia

As a scientist suffering from a poorly understood condition and as a patient frustrated by its unpredictability, I have spent many miserable days and nights wondering about the many idiosyncrasies of fibromyalgia. On sleepless nights, the patient in me has a conversation such as below with the scientist in me:

Patient: Why does bad weather (actually, a change in temperature/pressure in any direction) make my symptoms worse?

Scientist: Do humans have atmospheric sensors in their body like some animals? How does that signaling work to affect pain perception?

Patient: Why does the pain get worse during my periods?

Scientist: What is the connection between hormonal levels and pain signaling?

PatientWhy does the pain get worse at night, right when I am trying to sleep?

Scientist: Is there any connection between the circadian rhythm and pain sensitivity/signaling? If so, what is it?

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

ScientistIs there a feedback loop between the circadian rhythm and pain sensitivity? Why do patients with fibromyalgia experience alpha intrusions and not get restful sleep?

And the quintessential:

Patient: Why me? (yes, I know it’s cliche)

Scientist: What causes inter-individual variation in pain sensitivity? What genes are involved in those pathways and how does environment play a role in the development of the chronic illness?

As an epigeneticist (one who studies modifications on genes responsible for fine-tuning their function), that last question is especially close to my heart. I have a suspicion that a significant fraction of the population is probably born with genes that make them sensitive to pain perception. But only 2-4% of the U.S. population has fibromyalgia. So what factors are involved in determining who with the disposition actually develops the condition?

These are just questions for now. I have no answers for most (if not all) of them. But we need to find the answers. The more answers we have, the better we can treat ourselves, future patients, and perhaps even take preventative steps. So until then, perhaps that “why me” question is worth asking after all!

Love,

Fibronacci

On Acceptance and Healing

I read a wonderful article the other day by Rene, author of the blog Periwinkle Pursuits, on what acceptance means to her – and it really made me think: What does it mean for me to accept my pain, my condition?

Accepting a painful event is supposed to be the last of the five stages of grief. So then, I wonder: Is acceptance, perhaps, the first step to healing? I don’t mean healing as in getting rid of your illness in a way that a broken bone eventually heals, but healing in the sense of letting go of the emotional baggage that comes with being chronically ill.

serveimage
The five stages of grief

I think my idea of acceptance of a condition like fibromyalgia is two-fold:

1. Finding a working relationship between pain and doing the things you enjoy. Since the pain of fibromyalgia is a constant companion, I like the idea of accepting it as one, and doing things despite the pain. However, one also needs to be smart about it and not overdo it!

One example for me is wearing heels. I love wearing heels! They need not be high heels, but even short tiny heels. They make me look good even when I don’t always feel up to it, and gives me that little confidence-boost when I need it. Do I perhaps look silly limping at times with heels on? Yes, I guess I do. I’d limp in flats too. But as my husband once put it: if you’re going to use a mobility aid, you might as well wear those 4-inch heels!

Now would I do it if the pain was unbearable? Errr, no! Or if it caused prolonged severe pain? Definitely not! But in my case, short heels are actually more comfortable than flats. With the occasional high heel, a little extra pain may be worth the look and the confidence injection! But a LOT of extra pain would NOT be worth it.

Another example is me attending a teaching workshop next week that starts bright and early at 8 AM and goes on for 12+ hours (with barely any breaks) for FOUR DAYS. To be honest, I am dreading the brutality of the flare that is going to follow. But I am also very interested in learning more about scientific teaching so I can be a better teacher. So I am really really hoping that the workshop is worth the flare up of my symptoms!

2. Being grateful for the good things the pain/chronic condition has brought into your life. This one took me a while, but I think is very important. I believe that there is a reason things happen to us, though it may not be clear for a while what that is. Every event in our lives is meant to teach us something. The biggest thing fibromyalgia has taught me is to be grateful for the tiniest things each day.

For instance: most people can walk from one place to another without expending much thought to it. I used to be one of those people not so terribly long ago. But now I feel every step I take as I walk, and part of my mind has to be constantly focused on my walking. My breath has to be synchronized with my movements when going up or down the stairs. I call it mindful walking! And I’m grateful for being able to do it. I am grateful for the days when I am just achy instead of crying in painI am grateful for the days when I can go back to work after my aquatic medical exercise sessions, instead of the the fatigue making me bed-ridden. I am grateful for being able to get up in the morning, get dressed, go to work, and live a full day.

Do I believe it is bringing me closer to healing though?

In some ways, yes:

Being able to accept my pain and make changes to my life accordingly has brought me some measure of healing on an emotional level. It has helped me see myself and my goals in new light. I have come to realize that working around my condition is not giving in to it, despite what people say. It has forced me to look for new doors and try to open them as old ones have closed on me. Perhaps even look for a few windows with cracks in them!

But in other ways, probably not. Here’s one example why:

Yesterday at my medical exercise session, I was asked how I felt. I responded, not too bad given the stormy weather. But my old physical therapist (who knew I was sensitive to the weather) noticed I looked awfully drained. I admitted I was tired. So they tried to provide me with some relief by floating me horizontally with one pool noodle under my neck and another under my knees. And I never realized how much pain I was in until I felt it melt away! I told my PT and EP that that was the first bit of pain relief I’d had all day.

That kind of acceptance can be dangerous in many ways! If I accept the pain so much so that I am misjudging its intensity and impact on me, then that could hide other serious conditions that might crop up in the future. But it is hard to know what feels abnormal when you haven’t felt “normal” in ages! So maybe the true healing comes from the next thing fibromyalgia is trying to teach me: MINDFUL ACCEPTANCE!

Love,

Fibronacci

Discovering Self-Compassion

A few days ago, I wrote a contemplative post, wondering how much I might be catastrophizing my own pain and giving it more attention than it needed. Ironically, I was in some intense pain when I wrote that after being advised repeatedly to use mind over body and ignore the pain.

Yesterday, I was in the same spot again, but ultimately broke down and took my pain medication. A few hours later, I noticed that it had taken the edge off the pain. It was now down to a level I could live with. And it was then that it hit me! I am already using all kinds of mind over body tactics to keep myself active and moving and involved with life. If it is only after taking the “emergency pain pill” and extra muscle relaxers that the pain is down to a manageable level – not gone, mind you – then how much worse must it have been before?

I would never treat anybody else in that kind of pain with as much insensitivity as I treated myself. So why did I treat myself like that? I would never disbelieve another person if they expressed that much pain. I would never ask them to just not pay attention to it or act like they are making it out to be worse than it truly is. So why did I disbelieve my own pain and wonder if I am catastrophizing?

heart-mind

I think part of the reason is that, as a scientist, I am loathed to take subjective data at face value. And pain levels are just that! Even so, I feel like I often view my own situation with objective lenses from time to time, so there is no real reason for me to invalidate subjective data coming from myself. There is no prior evidence of me acting like a baby  or engaging in extended pity fests. If anything, I am always extra tough on myself. And now, my naturally harsh inner critic seems to have internalized things others say or views of chronic pain patients that the society holds, and is belittling me for admitting when the pain gets out of hand. And as an objective observer of myself, I can see that this is akin to re-victimizing the victim for an event they could not control.

As a person who has counseled child abuse and domestic violence victims, I couldn’t dream of saying anything that would make their pain feel invalidated. I have always encouraged them to admit their own anguish – if only to themselves – so they can work through it. And I must treat myself the same way.

Self-Compassion Teapot

In many ways, I feel the pain has robbed me of my youth, my dreams, my spontaneous adventurous nature. And that kind of pain and anguish is difficult to ignore. Both physically and emotionally. And I need to be OK with admitting that to myself. Not suppress it or call myself a whiney-baby for feeling it. I wouldn’t say that to a friend, if we had swapped places. So why should I say it to myself?

Ultimately, nobody can know my body as well as I do. So I need to take a stand for it when it needs me to. If I wouldn’t doubt the validity of a friend’s complaints who was in my place, I shouldn’t doubt my body’s either. I need to turn off the inner critic and take care of myself as I would a dear friend. I have never listened to “society” or “other people” when I have cared for or counseled my friends in difficult positions. And I shouldn’t allow society or people to influence how I treat myself either.

newinnervoice

It has been a long journey for me, discovering self-compassion. I started it a long time ago when caring for my inner child overcoming various unpleasant repressed memories. I may have gone off-track for a while. But I am grateful for the turn of events that has brought me back!

Love,

Fibronacci