Hitting the Reset Button in my Brain

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

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

1. Take time by the moments instead of days.

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

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

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

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Emptiness

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

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

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

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

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

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

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

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

3. Accept that it sucks.

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

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

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Peace

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

Gentle hugs,

Fibronacci

 

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

Fibromyalgia is not “just” feeling achy and tired

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

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

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

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


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

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

ATP_overdrawn

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love,

Fibronacci

Weathering the Daily Struggle

“There’s a lot going on right now.”

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

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

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

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

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

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

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

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

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

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


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

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

Love,

Fibronacci

Blogmas 2017 Christmas Tag

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

What is your favorite Christmas movie?

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

Charlie_Brown_Christmas

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

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

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

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

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

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Do you open your present Christmas Eve or Christmas Morning?

  • Christmas morning.

Have you ever built a ginger bread house?

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

What are you most looking forward to this Christmas season?

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

Any Christmas wishes?

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

Favorite Christmas smell?

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

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Favorite Christmas meal or treat?

  • Ferrero Rocher

How do you traditionally spend your Christmas day?

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

Do you open stockings first or presents?

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

When do you put up your tree?

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

Least favorite part of Christmas?

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

Any unusual traditions during your Christmas?

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

Favorite childhood Christmas memory?

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

Would you like to participate?

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

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

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Ladies of the Light (digital)

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

Love,

Fibronacci

 

How Acceptance can lead to Happiness

A few weeks ago, I was triggered by an certain events to give some serious thought regarding “acceptance” of a chronic condition as a philosophy. And then of course, I had to wonder: why do we seek acceptance in the first place?

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On a practical level, acceptance can mean that we are finally in tune with our bodies, and are working it without overworking it. Thus, we are able to find some sort of a steady state for ourselves, where the ups and downs are not too high or too low. This, of course, is a reason all by itself to accept an unpredictable and often brutal illness like fibromyalgia!

But I feel like the true essence of why we seek acceptance lies in its emotional impact. A state of acceptance promotes a state of happiness.

acceptance_2

Chronic illnesses are difficult beasts to deal with. I had previously likened fibromyalgia to being in an abusive relationship, in many ways. It is the invisible partner in my life, who beats me black and blue from time to time, often for no apparent reason. Such chronic conditions can be extremely frustrating to try to build a life around.

When one is in denial of a chronic condition, I feel that is akin to an all-out physical battle between the self and illness. The self wants to make no room for the illness; and the illness retaliates with resentment, and wishes to annihilate the self! On the other end of the spectrum, when one is resigned to the chronic illness, they have given up the fight completely, the enemy is camping out in the self, ravaging it from within. Both states leave the chronic illness sufferer feeling very helpless, as they struggles with losing control over their bodies, and their lives in general. Neither is conducive to seeking happiness with a chronic illness.

Somewhere along that continuum lies acceptance. Here, there is no all-out battle; neither is there a simple surrender. It is more of a quiet, deliberate, game of chess between the self and illness. Each calculates their move carefully; and if played right, the self usually gets the upper hand!

So how can acceptance lead to a state of happiness?

1. By offering PERSPECTIVE. Accepting a chronic illness does not mean being OK with half a glass of water, or even necessarily thinking it is “half full.” In my view, acceptance offers a realist’s perspective, where the glass is both “half full” and “half empty.” The chronic illness may have taken a lot from us, but we still have a lot of us left! Accepting the condition means taking both into account. We may have lost our energetic selves and left counting spoons through the day; but we still have our goals and interests! Being able to keep sight of the fact that we remain “ourselves,” underneath the burden of poor health, helps the happiness quotient!

2. By encouraging a PROBLEM-SOLVING attitude. Once we accept the chronic condition, we begin to acknowledge the associated problems and limitations, and then find practical solutions to them. Instead of the illness itself, the focus now is on overcoming the limitations the chronic condition imposes. This problem-solving attitude puts us back in charge! We can begin to plot how to rebuild our lives around the chronic condition. It is a way of regaining some control over our lives that the chronic illness may have snatched from us. Nobody likes to feel tossed around on the choppy waves like a rudderless boat. The feeling that we still have some power to steer our lives in a satisfactory direction, albeit perhaps towards an alternative to the original one planned, is an important ingredient in the recipe for happiness.

3. By promoting INNER PEACE. A combination of the understanding that the chronic illness does not fundamentally change who we are, and that we can continue to be somewhat in charge of how we work around it, promotes a sense of inner peace. We learn to identify that the chronic illness is a part of us, but that it is only one part of us (out of very many)! Once we have made some level of peace with that, it limits self-doubt that is often triggered by others who doubt us and/or our diagnoses/conditions. It all promotes a level of inner peace that I think is crucial to find a state of happiness, if not the very essence of happiness itself.

Most of my “happiness philosophy” stems purely from my own experiences, both from long-term growth as well as brief moments of revelation, followed by long periods of meditation on my experiences. But it’s interesting to see how much of it aligns with the current research on what makes people happy! Yet “happiness” is a very personal thing, with each person having their own definition of what happiness means to them.

But there is also a higher level unity in human psychology. People from almost any part of the world, belonging to any religion or any culture, generally find happiness when they feel like the universe is their friend, instead of it trying to thwart their every move. They find happiness when they can see themselves, and their trials and tribulations, in perspective, instead of feeling like they are being manipulated by unseen hands. And no matter how one defines what core happiness means to them, cultivating a state of mental peace is crucial regardless. In fact for many, that state of inner peace, itself, is what they might call happiness!

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Heartbeat – a digital abstract series focusing on the unity of minds in search of acceptance and happiness

It can be very difficult, however, to not feel like the universe is playing nasty practical jokes on you when you suffer from a chronic illness. And cultivating a state of peace amidst the inner turmoil can be difficult indeed. But accepting that illness may be the first step to emotional healing! As I said in my previous post, however, the road acceptance is not a straight path, and the very state of acceptance is along a continuum, and ever-changing like a dune. But regardless, in looking into ourselves to seek it anyway, we might unlock the secrets of finding our secret source of happiness.

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?

A Lesson in Perspective and Acceptance

Is the glass half full or half empty? In one’s mind, it may be either, depending on whether they bend towards a more optimistic or pessimistic view of the world. But in reality, it is both. Admitting this realist perspective offers an opportunity to cultivate acceptance, which can then lead to happiness!

69_The In-Joke

There was a perfect storm of unpleasant events about a week ago. Allergy season brought on a sneeze-fest, which triggered intense spasms in my back, that then wound up my muscles up in a knot most sailors would be envious of. The back tension spread to the neck and head, eventually bringing on a bout of recurrent migraines, complete with the ice pick stabs, aura, and symptoms of trigeminal neuralgia. After waking up in the middle of one of the worst attacks of the series, I painted a dream image titled “No End in Sight.”

I will not lie, I intended it to be every bit as depressing as the title sounds. At the time, the pain felt relentless. By this time, I had been in a flare more days these past few months than I have been “normal.” I tried to encapsulate complicated feelings of hope and hopelessness, pain and exhaustion, the desire to keep trudging and the desire to just stop, all at once, in the painting below.

Abstract_11_No End in Sight
No End in Sight (a journey through time)

And yet, a friend, one far better versed in chronic pain than myself, planted an idea in my head that helped me see this image differently. She pointed out how his burden gets lighter with time!

That sprouted a thought in my mind: perhaps he is not giving up after all! Perhaps his perspective has just shifted, and he is simply accepting that he is stuck in the desert for the moment, that there is no use fighting it, so he might as well accept his current situation. As he tries to find peace within himself (note the hermit look by the end), even under the less-than-stellar circumstances, his “burden” is made lighter.

Though this might seem like a silly optimist’s game of what-do-you-see-in-the-picture, ultimately, perspective is all that matters. I felt it acutely on the 4th day of my recurrent migraines, when I felt momentarily delighted to wake up with my regular all-over fibro pains! This meant that my headache intensity had now lowered enough for me to feel pain elsewhere on the body! Of course, that delight was short-lived once the spasms started reasserting themselves, and another migraine attack followed shortly thereafter. But in that bizarre moment when I was happy about fibro pain, I learned an important lesson in how much our perspective on a situation determines our response to it, much more so than the situation itself.

I do not believe that one needs to be an optimist to find happiness in tough situations; one only needs to be a realist. If you are wondering if the glass is half empty or half full, I would argue that it is both! No situation is all good or all bad (despite chronic illnesses tending towards the latter). As an example, I recognized that because of the rest that my unwelcome migraine forced on me, I am in less pain overall (for most of the day) than I have been in months! Being able to see both the good and the bad of fibromyalgia and its associated maladies have helped me accept things for what they are. And with acceptance comes some measure of inner peace, which then translates to happiness.

I have written in the past about what acceptance means to me on a practical level, but not much about what acceptance, as a concept, might mean (or what it might not!). And though I have implied the role of “acceptance” in finding happiness with a chronic illness, it doesn’t much help those still in search of either. So I have decided to do a series of posts after this one, talking a little about what acceptance means from my perspective; how it can lead to happiness (or at least, less frustration); and finally, some of the ways by which I think I was able to achieve that state of mental stability. I hope that my insights can reach somebody still in search of these ideas, and that they may spark thoughts in their minds that lead to their own personal definition of acceptance and happiness!

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?

Tough Realizations (Part II)

After a recent particularly bad flare, I had to make a difficult decision to walk away from a field in which I realized I was not welcome at anymore. If I stayed, I would constantly be forced to push myself beyond what I was physically capable of, and would still not be able to meet expectations. So you would think the separation would be mutual and amicable; yet it is not.

In many ways, I feel like I am still very tied to my work identity (although it’s been a work in progress detangling myself from it). Being a “scientist” is one of the major ways I identify myself. Every other descriptor I could think of – artist, woman, chronic illness fighter, etc. – are all farther down the list. When I think of descriptors of myself, “relationship phrases” don’t show up very high either. Many people identify themselves strongly as a parent (father/mother) or child (son/daughter) or spouse (husband/wife), or in other such relationship terms. I have trouble with that. I have always been a painfully independent person, almost to the point of being a loner. And I suspect it is the associated loss of both personal and financial independence, that comes with being ill and out of work, that is at the core of why it has been so hard for me to face the fact that I just need to take a break to focus on my health for a while.

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I am tired of pretending I am stronger than I am . . . so why can I not STOP?

The loss of personal freedom has been something I have been constantly struggling with since developing fibromyalgia. While I can be great at offering and providing help, I absolutely suck at seeking and accepting it! It took me a while to even recognize that I had my partner in my court, and that its OK to lean on him and allow him to help me. It made a world of difference once I let myself be helped with my day to day tasks! And for once, I felt comfortable enough being helped that I never realized how hard it would be physically to live without that help!

Living in a small town, my chances of getting a job here were pretty minuscule, especially in science. For many years, I kind of saw this as a boon because I hated being trapped in one place for too long, and this place seemed to come with its own time limit. But now that it was time for me to move on and take a job in a different part of the country, I had to seriously consider how I would manage a demanding full-time job with other issues like uncertain transportation (potentially a lot of walking), cleaning, cooking, laundry, bathing/hair washing, and a myriad other day to day things that I often need help with. All of the little things that didn’t even merit a thought in my brain at one time are now all serious issues that have the potential to wipe me out and flatten me on my back for days.

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Accepting help is its own kind of strength

I realized that for the first time, I actually need my husband to be with me, physically, and help me out! Not to mention, I would also need him financially, if I were jobless, and not just to provide general subsistence (a shared need), but also for my healthcare needs (a very personal one). And I have never needed anyone in that way before. As a person who prizes her independence, that realization – that I might really need someone now – was one of the toughest I have ever had to come face to face with.

My husband knows how hard that is for me. In fact, he has always known it. That is why he has never made big deal of helping me – he just did it quietly and unassumingly – and made a point of doing so without treating me like an invalid. I feel like very few people are lucky to have that kind of love in their lives. And that is why – perhaps what has been even tougher for me to face – is that even that kind of selfless love does not make up for the sense of loss that I feel due to my illness.

This realization has been really hard for me because it is almost like admitting his love is not enough, despite everything he does for me all the time. And it makes me feel guilty, because he has been the only constant force through many of the things that I have been battling for many years. Yet it is not as if I am not grateful to him and for him. But it is the gratitude that one might feel for nurses when interned at a hospital. It’s great to have that tender loving care, but they would much rather never be in the hospital in the first place!

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It is through the snow that spring bursts through!

Though, in some ways I wish I never had to face these harsh realizations, in other ways I am grateful for them. It has given me a chance to really think about why my work identity matters so much to me. Why am I so loathed to accept help? Why do I feel this insane need for independence? It has given me an opportunity to delve deeper into myself and work on long-standing issues that I may never have otherwise. So as a person who craves new and varied experiences, as unpleasant as this one is, I still see it as an adventure! I am still expecting good things to come out of this time of uncertain and difficult realizations. I may be a ship in a bottle for now, but that doesn’t stop me from still looking out towards the sea.

Love,

Fibronacci

Tough Realizations (Part I)

What felt like a whirlpool inside a sinkhole around this time last week, is finally looking like just a simple crater (minus the suction) now. For the past month or so, I have not been able to fully shake off a flare. With fewer hours spent at work or recreation, and more resting on my heating blanket in bed, I feel like I am starting to get this down to somewhat manageable levels. My doctor and I are also working on new medication to see if that can help with the daily pain and fatigue management. The upshot of all of this has been a lot of soul-searching, a healthy helping of frustration and some unavoidable, tough realizations about the way forward.

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“Pushing Through” – crocus flowers pushing through the snow in spring (digital, “oil on canvas” finish)

Until last year, I had some hopes of being able to graduate and move on to an academic postdoctoral training job. I had the condition enough under control to be a reasonable (though less-than-ideal) postdoc for few years to gain the training I would need to eventually move on to a more cushy, permanent job. But I rapidly realized that those dreams were castles built in air, for two reasons:

(1) My body decided even coming close to that kind of workload is a no-go.

(2) “Reasonable” postdoc jobs are practically impossible to find. The boss wants a publication-machine, not a person with a life. Add a chronic illness to that? Unthinkable!

Which brings me to the tough realization – that unless a fairy-godmother steps out of a pumpkin for me, I am probably going to have to take a real break after graduating and be out of “real” work; or (what feels like a complete non-option), take on a postdoc job that might be the (figurative) death of me.

In case you were wondering what I mean by “real” work, you are in good company. I have been giving that a lot of thought lately too, and may be topic for a future post in itself.

I feel like some part of me knew all along that it would come to this, but I needed the latest flare to remind me to quit kidding around. I spent the entire last year coming up with every reason for why I cannot be out of a job – everything ranging from financial, to emotional, to career potential and innate ambition. But all of that has come to nothing. I realized that the time is here and now for my husband and I to start revising our budget to account for the absence of my paycheck. And I am not looking forward to the pain that changing health insurance plans will inevitably be!

What I do know for sure is that it would be utter stupidity now to ignore the gut-punch that my body has just dealt me. (Talk about tough love!) And that I need to prioritize my health in a very real way – not in the kind of tangential way I had been doing before. I know things are going to be financially tight for a while, but I am hoping that taking a temporary break will help me get back to a different kind of work later on. Otherwise, I am afraid I might crash for good at some point in the (probably not-too-distant) future and never be able to work at all, and then finances will be tight forever!

For now, I am trying to focus on pushing through one day at a time. I try to keep my chin up that this might be the beginning of a new trajectory that might lead on to a fruitful new journey. I am not one who believes in regrets. I believe that every path we choose at a fork leads us down a different probability. And each of those probabilities will have its own ups and downs, and none will be perfect. So take your pick and let life lead you on!

Love,

Fibronacci