Weekly Photo Challenge: Transformation

Chronic illness transforms us in many ways. For thanksgiving, I chose to focus on the good ways that Fibromyalgia has transformed me, as I reminisced about my life in general.

Just a few years ago, I was a high-energy person with no time nor thought for anything but to get ahead in the world. Yet now, I am a much calmer, more “centered” soul who is reconnecting with her old timey loves.

Autumn
By letting go of the old, we gain the opportunity to transform into something new — and beautiful!

Until I came down with fibro, it had been years since I had read purely for pleasure, though reading used to be my favorite hobby through much of my childhood! Always an inward-leaning and introspective child at my core, I incorporated my thoughts and feelings into my art (I did watercolors back then) as well as the poetry and fiction I would write for myself.

Later in middle school, I was the student reporter for the school-beat of the local daily, and contributed towards the school magazine in high school. I remember a particular editorial I once wrote about anxiety, depression and suicidal thoughts among students, and how the current education system in my country handled the issue poorly, not to mention the social taboo it was to even talk about it!

I lost touch with all of that once I got into college. Perhaps because of various new stresses and changes in my life at the time, I transformed into a much more “outward”-oriented person. I wanted to make the most of my experience in a new country, new environment; I wanted to soak up all the opportunities I suddenly had which I couldn’t have dreamed of before! Always an ambitious person, I finally saw the roads which could lead me to the success I sought! My definition of success was complicated; it definitely included job satisfaction and doing what I loved, but I also wanted money, position, autonomy, and a certain rank in the hierarchy of society. And I was going to work hard to make sure I did not waste the chances I was granted to attain it.

Though I am glad I got to chase my dreams and live that fast-paced life for several years, I am equally glad for being able to slow down as I developed fibromyalgia. Now I am finally able to reconnect with the pleasures of my childhood:

I am finally able to enjoy quiet moments reading at my leisure, or lost in thought as I write just for pleasure. I learned to paint in oils (one of my childhood dreams), and express my emotions through my paintings. (And that little rhyme was a nod to my childhood poetic musings, though I do little of that now.)

I am glad that even when I am stuck in bed, I can now find joy just watching the golden sunlight dancing on my walls, making patterns as the light passes through the blinds or filtered through the warm, fall-colored, translucent curtains.

I am glad that I am now able to delve more into photography and art, as I had always hoped to do more with those! There is something flighty and fun about stopping the car at random places to photograph a particularly beautiful purple leaf. Or simply walking around the park and admiring how the leaves on the shade-side of the maple turned red, but the light-side remained green. Or just finding a sudden glimmer of magic as the sunshine gleams through some colored leaves!

I gained all this and more as I let go of the person that I was before fibro!

And I am grateful for the opportunity to find a more authentic person hidden inside me, who is encouraged everyday to live a more authentic life, and all because of fibro!

Love,

Fibronacci

The Gift of Gratitude

Any recipe for happiness always calls for a healthy dollop of gratitude. It is, of course, easy to be grateful when one has something obvious to be grateful for. But when things are not quite so obvious, but you seek them out to be grateful for them anyway, that’s when the magic really happens (as I found out for myself today)!

For the last few days, I have been extremely nervous about an upcoming trip halfway across the world. It involves traveling for nearly two days, without the possibility of any real rest break in between. It is the first time I will be making quite such a trip since my fibromyalgia kicked in full force. And I am dreading the depth of the crash that will hit me at the end of it.

Though I am rarely the kind of person to bemoan my fate a lot, this was one instance where the unfairness really hit hard. I have always loved traveling and never really worried about making it by myself. But since my endurance levels have plummeted with fibro, my self-confidence has taken a heavy beating. I even considered asking for disability assistance at the airport, but I am not really disabled, and so felt incredibly guilty potentially stealing away the personnel and equipment from somebody who might really need it. Besides, I could only imagine the looks I would get in a wheelchair, at my age, and with my illness being invisible! All in all, I was really beginning to feel like life and fate were leaving me out in the cold.

After sliding halfway down into the pit of despair, it suddenly occurred to me, that despite the recently worsened fatigue problems, I have been no stranger to pain – not for a very long time! Traveling has always been hard on my back. Developing full-fledged fibro has just made it a bit harder. Yet, at the same time, having that diagnosis has meant that I now have much better resources to ease the pain than I did before! I finally have access to medicines that are designed to try to prevent bad flares, and then subdue them if and when they do occur. I never had any of that before! I was just forced to deal with the pain all by myself.

And suddenly, that one realization filled me with so much gratitude! Gratitude for being able to have the diagnosis, for being able to access the medication I need, for a medical team that has been beyond phenomenal, and for a family who have been trying to make my journey as comfortable as possible.

Life had not left me out in the cold! I had both formal and informal support systems to help me as new difficulties arose. Being able to recognize that, especially though all my grief and woes, felt like a gentle cozy hug on a cold and windy day. I couldn’t help feeling warm and fuzzy inside, as it filled me with so much joy, despite all my apprehensions about the trip!

That’s when I realized the true magic of the gift of gratitude. The joy it brings never runs out! There is always something to be grateful about, whatever the outward circumstances may be. And in that sense, it is truly a gift that keeps on giving!

I wish all my dear readers a wonderful holiday season! I may be gone awhile for this trip, but promise to return soon in the new year, with more thoughts and tips from my fibro journey. Thank you all for supporting me through 2016!

Love,

Fibronacci

My Quest for Peace

Cognitive challenges are one of the unhappy symptoms of fibromyalgia. I am lucky in that my brain has not completely turned into mush yet because of it. But between FM and the medication for FM, I have to admit that it might be softening at the edges a bit. Yet it has brought me closer in my quest for mental peace, in a way that I had never experienced before.

Featured image: Journey into the Light (8X10, oil on canvas)

Once upon a time, I could ace over 15 credit hours of courses a semester, along with teaching/tutoring and the myriad responsibilities that came with that, lab work as an undergraduate research assistant working towards an honors thesis, and still be able to keep up with all the bills, budgeting and financial responsibilities of our home, and perhaps more that I cannot now recall.

What would I have not given, back then, for some mental peace, some quiet space in my brain? To be honest, probably nothing! I just wished it could be tacked on on top of everything else! I took a lot of pride in being able to hold everything together by myself. I enjoyed the feeling of success. I did not know enough of what mental peace felt like to know if any bargain would be worth it.

Over the last few days, it has just struck me how I have been slowly letting go of all that more and more. I cannot place when it exactly started, or what the progression was like, but now, all of a sudden, I find myself barely remembering to pay the few bills that I am still responsible for. If one experiment schedule changes, or one extra thing gets added into my day/week, and the written reminders are not immediately updated, I often forget that those changes happened. I use reminders on my phone for my medicines, but if I miss the reminder, I even forget to take those!

All I can figure is that I used to have a mental PA, who was always up and awake at all times, and managed my day/week/life, and updated the mental calendar with any changes that happened, so I could keep up with it all – and now she is starting to slack. She often falls asleep on the job, or does not (re)calculate fast enough. This results in me forgetting things from time to time, making some embarrassing mistakes, others that cost time and money, and occasionally feeling as useful as a wallflower.

However, the upside of this is that it has brought me more mental peace than I ever had before. Much of the chatter in my brain seems softer now. The wheel in my brain that used to always churn, never allowing me to mentally relax, is now churning a bit slower. As a result, I am able to achieve a level of calmness in my being that I never knew was possible.

Even when musing about my past abilities recently – this was after I had just made a series of goofs because of my forgetfulness – the delayed processing meant that the musing was without any bitterness or resentment. There was only with a sense of nostalgia; like what an old person might feel, something in the lines of “I had a good run while it lasted.” And I am grateful for being able to make the most of it.

I did not choose to trade off my highly prized uber-independence for mental peace necessarily. But now that the decision has been already made for me, perhaps it is not all that bad as I thought it would be!

Love,

Fibronacci

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

Getting Honest about Chronic Pain – Part II

Fibromyalgia is like being in an abusive relationship. You are forced to share your life with a beast that throws all kinds of punches at you until you are battered and bruised. You feel isolated, and like you cannot get out – trapped and doomed. Every now and then, it lets up a little, and you think you can have a stable relationship that is perhaps not ideal, but tolerable. But then it comes back with double the force and knocks you back down again. Eventually you realize that you will never be able to have a fully stable relationship, and you live under the fear of the next pain storm. Slowly, the fear creeps into your very being, and kills you from the inside – while this whole time, outwardly, you look perfectly fine.

Chronic pain doesn’t just screw your body up, it also messes with the mind. Regardless of how much I believe in positive thinking, it is hard for me to keep a cheery face and be positive all the time. It’s hard to keep that chin up always when you are at the mercy of something as unpredictable and changeable as the weather. I am afraid to hope for anything now, especially the future. And it doesn’t help that I feel disconnected from my past.

I believe that everybody has their place in the world, in terms of what contribution they could make to it. For me, that was science. It was a job I loved, and I put my heart and soul into it. But now, becoming a “respectable” scientist feels like a distant hope to me.

If fibromyalgia had struck me twenty years from now, when I was an established professor, I may not have been so frustrated regarding my career, because I would have had others to do the hard labor for me. But it struck me at a time when I am expected to put in long hours and work hard and work fast. So now that I cannot perform at the level that I am expected to, I have been practically disowned. Even my boss of five years – who once praised my enthusiasm for science, saw how hard I worked for little to no pay, and admired my work ethic – told me he wouldn’t hire me in my current position. This is despite the fact that I am trying to make up for less work time with better efficiency and task delegation. (I guess I can kiss any hopes of a good recommendation letter goodbye!) It is clear that science (at least, academia as I know it) has no place for slowed-down cripples like me.

I know I can find other ways to contribute with my science training, but my self-confidence has taken a serious beating since I haven’t been able to stay out of bed longer than few hours each day. At one time, I felt I could touch the stars if I wanted to and worked hard enough to get there. Now I feel like I’d just burn my hands if I tried. I don’t know what I am even capable of anymore. In many ways, I feel like I am losing my mind and important pieces of my identity.

Most days I am able to pick up the pieces and move on to forge new paths for myself. But on days when I am both physically and mentally exhausted, I feel like I do not have it in me to carry the burden and just keep trudging. Sometimes I just feel like stopping in my tracks and weeping – allowing myself to feel the loss of a life that could have been. And other times, I simply struggle to stay afloat when I feel everything around me is sinking.

On that note, I am desperately grateful to have a real person to share my life with who can be the sole reason that I fight through the storm to stay afloat. When I am getting beat up by fibromyalgia, the invisible brute in our lives, my husband is always there to tend to the wounds. Some days I feel guilty for perhaps not being a good enough wife to him (though he always insists that I am more than he could ever have asked for). And that guilt, which is nothing but a sullying mark on a beautiful thing, is also a reality of living with chronic pain. As is his feeling of helplessness at not being able to do enough to help me in practical ways.

Yet, chronic pain is also what brought us closer together in a very special way. So in many ways, I am thankful to fibromyalgia for that. And that – finding reasons to be thankful for the thing that ruined the life you dreamed of – that too, is a reality of keeping afloat with chronic pain.

Love,

Fibronacci

 

In Sickness and In Health

This is going to sound bizarre, but I think in some ways, being diagnosed with a chronic illness has made me incredibly selfish. Maybe, a better word is self-centered.

I felt that fibromyalgia my battle to fight, my demon to slay, and I was wary of letting anybody join the one-woman army. I have always had issues letting go of perceived control and trusting completely without guard. This attitude blinded me to the fact that my condition did not just affect me, it equally affected my husband. So if I ever selfishly believed that I was my own army, I was living a lie.

My husband reminded me of that very recently with a few simple words, we are in this together.”

I expected to feel some combination of fear and relief at that declaration. Instead, I could only feel embarrassed.

Embarrased, because how could I ever have thought otherwise? We were always in this together. If we weren’t, then why would he wake extra early only to force me to wake up earlier than usual, in my  healthier days, so I could get in extra study/work time before classes? If we weren’t, then why would he deal with all my frustrations, agonies, eccentricities and melt-downs, and be steady as a rock through it all? And that remains true of both my healthier days and current ones, though the themes for each have changed. If we weren’t, then why would he keep better track of my pill times than I do? Why would he make it a point to buy me a new supportive pillow nearly each month, as soon as the previous one starts to feel flat? Why would he take the initiative to research new pain relieving methods for me to try out, knowing most of them are likely to be a waste of money? Why would he cancel plans at the drop of a hat, plans he may have been looking forward to, just because I felt tired, and never once complain? Why would he give up on his own rest at night just to comfort me in my tiring sleeplessness, or to try to massage me to sleep, and never once take an apology from me for any of it? Why would he take up all the extra household chores, that once used to be my responsibility, just to save me that energy that I would otherwise expend on it?

The truth is, whether I explicitly admitted it or not, we were always in this together – in sickness and in health. It is so easy to say the vow when one does, but so much harder to live it. When we married quietly after knowing each other for over a decade and living practically in a marriage for half that time, the spoken vows meant to little to us. We were already living it.

The only vow I needed to make that day is really a wish. I wish to never be so blinded again as to not be able to see when he is riding alongside me in every battle; to never be so selfish and self-centered again as to believe I am a one-woman army; and willfully abandon my guards when I lean on him, with the trust that he will never let me down.

Love,

Fibronacci

Featured image: At Sky’s Edge (8X10, oil on canvas). A tribute to one of my favorite contemporary artists, Giuseppe Faraone – modified to explore ecstasy in contemplation.

 

Winning Tigers

Two exciting things happened this week:

First: The featured image, my photograph of a couple of tigers sharing a tender moment at the local zoo, won their photo contest in the novice adult category. This was surprising because although I have always loved this picture, it was an instantaneous shot with my crummy little phone and took no doing on my part really! I was just at the right place at the right time.

The second incident has to do with my last aquatic therapy session when I trained with a different therapist than usual, a more senior one and her student. The student led the session that day. She couldn’t have been much older than me (if at all) and was oozing confidence, and she was amazing! She was also driven to work on strengthening my aching muscles and she did let on that my strength scores were woeful. I found it pretty difficult to do some of the stuff she was making me do. This was embarrassing given how fit she was compared to me, being of similar ages and all, but I was honest about my discomfort. BUT THEN . . . after a while, the senior therapist started talking to me about my evaluations and how I am doing, etc. and she said that she has seen many fibromyalgia patients throughout her career in all shapes and sizes and severities – and I was actually at the front end of that scale! I may be woeful compared to others my age, but I was doing OK for a fibromyalgiac!! She thought I was off to a good start with the physical therapy and lifestyle management (fewer working hours, more rest time, energy conservation, etc.), and will probably be able to manage my condition pretty well in the long run as long as I stay committed to reducing stress, building in more “me-time,” and basically being cognizant of my body and not pushing it too hard too fast.

Woot! I hadn’t felt “at the front end” of a lot of things recently, and now two incidents happened to remind me of my potential in one week! I’ve also always had lingering doubts about wasting my time trying to conserve energy and rest more, and have the tendency to push myself until I crash. I have also had little direct encouragement (other than from my husband) to cut work time and build in more recreational/rest time. For the most part, I had considered that aspect of my management scheme to be mostly met with either disdain or general indifference from other people. Now here was somebody in an objective position who openly encouraged more of it!!! She also made me feel like I was doing pretty good being in charge of my condition and she made me feel good about doing some of the things that generally carry a load of guilt and anxiety for me. So whoa! That was a refreshing perspective!

I am so grateful to the powers-that-be for this turn of events. I really felt like I needed a jolt of encouragement right about now and, lo and behold! There it is!

To use Michael J. Fox’s words with modification (from his memoirs), I am a lucky woman.

Love,

Fibronacci