Dealing with Disappointment

Chronic illnesses bring with them a slew of disappointments, big and small. While it seems against the whole “stay positive” theme to admit that, ignoring disappointment under the guise of “positivity” is a bit like hiding an infected wound under a bandage — it may look clean and tidy on the outside, but it’s still festering inside. Therefore, we all need tactics to deal with those disappointments — actually treat that infected wound with antimicrobials — and do it with a positive attitude!

This past week, my physical state has led to some definite disappointments. I was down with a fibromyalgia flare and recurrent migraines for the entire week. It was one of those weeks where I was barely up from one assault before the next one knocked me back down. Each time I was expecting to feel better, and each time I was disappointed.

First came the piercing pain, the nausea, the occipital and trigeminal neuralgia, over several days. As the migraine abortives dulled those, other symptoms asserted in its place: a worsening of the gnawing pain in my legs, neck and back spasms, shooting pains along my spine, burning pains all across my back and arms. For a day or two, it was hard to even dress myself or comb my hair. Then when time and tramadol dulled those a bit, I realized I was in the grip of complete and utter fatigue. I was exhausted to where I was dizzy and eating, at times, was a difficult endeavor. Only by the end of the week did I see a pattern, and realize that I was in for an all-around fibromyalgia flare.

89_Solitude
Based on a similar painting (unknown artist) that was swathed in cool blues and depressing hues, I experimented with some colors to inject HOPE into the scene. (oil on 8X10 canvas; available)

The result was that I missed all week’s worth of pool exercise classes (though I stayed continually optimistic about being able to go). I also missed the once-a-year outdoor art market that was held yesterday. I have no energy to get up to do anything at all, not even a bath. Needless to say I was fairly disappointed. Disappointed that I “wasted” a week in bed, disappointed that I have no energy to pursue my painting aspirations, disappointed to have missed the art market that I was looking forward to for months!

Unfortunately, weeks like this are not uncommon for me. They have caused me much agony in the past. At first, I would push through regardless. Then later, as that stopped being an option, I would be reduced to tears, wondering if my life will now forever be at the mercy of my condition. Then one day I realized that while many things may indeed now be affected by fibromyalgia, one thing I do have some control over is how I react to it. Having sparred with the “dark side” before, I knew I had the power to “unsink” myself. Therefore, in order to keep my chin up while dealing with such disappointments as my own body has proven to be, I developed a few practical tools.


The three main tools in my “coping with disappointment” toolkit are:

1. Finding an alternative that’s equally appealing

One of the most disappointing things about being down with a chronic illness is thinking of all the things you missed. Chief among those last week was the art market I really wanted to go to but really didn’t feel up to. I have also been hoping to start painting more since last weekend, which has not yet happened. So instead, I decided to engage in other painting-related activities that I could do from bed:

  • I worked on my new Etsy shop, listing new paintings on there regularly.
  • I tried creating fancy displays for my paintings with a new app I downloaded, and have been sharing them on my Facebook and Instagram art pages.
  • And last but not the least, I am sharing my artwork through the blog posts I am writing!
PhotoFunia Kitty and Frame Regular 2017-11-17 03 47 34
One of the fun painting displays I created using the “Photofunia” app. My painting of the daffodils is titled “A Breath of Sunshine” (oil on 8X10 canvas; available).

There have been other “alternatives” in my toolkit too, like writing/blogging, reading* and marathoning through Stranger Things and Anne with an E.

The result was a week where I was in pain and discomfort (I won’t sugar-coat it), but I kept myself “active” from bed, engaging in things that made me happy! The week was not what I wanted it to be, but it was enjoyable in its own right, making it hard to be too disappointed by it.

2. Listing the recent good times

When dearly-held plans get trashed, when life disappoints you, it is easy to feel like your whole world is nothing but a dark dreary mess. I can’t definitively prove it, but I have it on good authority that time moves slower when you are in pain! So it is no surprise that it feels like the low point lasts forever. But the objective truth is that the sun has not been and will not be behind the clouds forever. It was out once before, and it will be again. And even while it’s hidden, there are some silver linings!

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The Silver Linings (oil on 5X7 canvas; available)

One of the ways I remind myself of this is by listing the good times I have had recently:

  • Mini art vacation last month
  • Haunted house on Halloween
  • Steampunk festival
  • Shopping (for office-wear for my new job)
  • That’s right, I got a new full-time job! It is with the state as an environmental health scientist.

When you list all your fun times like this (even if you were in pain during some those times, or crashed afterwards — which I did), you realize that all is not dark and gloomy with your world. Life is not all that disappointing as it might seem right now.

3. Showing yourself some self-compassion

Whether or not anything in the toolkit helps you feel better, it’s always good to show yourself a bit of compassion regardless. The idea of self-compassion is to treat yourself like you would treat a good friend. Be kind to yourself as you would to a friend.

Self-Compassion Teapot

This one in particular is a work in progress for me. When I feel like I am “wasting” my time in bed, I try to remind myself that resting when I feel down and out is hardly “wasting” time! In fact, it is the only thing to do! I am being more efficient with my time by recharging when needed; if I kept pushing through, I would only prolong the flare and be less productive for longer.

So don’t berate yourself for the rest you need. Try not to begrudge a bit of comfort eating, or the pleasures of binge-watching Netflix shows. Or give yourself time to weep, if you so feel; allow yourself the space to be unhappy. Disappointments lose a lot of their edge after you have just allowed the wave to wash over you like a tide. Every tide eventually ebbs.

newinnervoice


Though I placed a lot of the examples of my tools in context of this past week, all of these work for much bigger disappointments as well — such as the mega-disappointment of dealing with a chronic illness in the first place.

For example, my new job as an environmental health scientist with the state government is one of those “equally exciting alternatives” to my plans in academia! And if I think back to all the years that I was in high school and college, the years I spent doing the science I loved, the time I spent in the company of colleagues and friends I loved, those are some very good times indeed! My life has been worthwhile through storms I have weathered before I developed fibromyalgia, and will continue to be so as I weather this one as well. And as for self-compassion, that’s a worthy attainment regardless of whether you are ill, but especially if you are chronically and invisibly ill. When the world misunderstands and mistreats you, you may be the only one showing yourself some much-needed kindness.

I hope that my toolkit give you ideas to develop your own tools to fight the disappointments that a chronic illness might bestow upon you. And if you’re a veteran chronic illness warrior with some tools of your own, I invite you to share them below so others reaching this blog may benefit from your experiences as well!

Gentle hugs,

Fibronacci

 

*If you’re curious regarding what I am reading at the moment, it is Martha Mason’s autobiography “Breath,” where she talks about how she lived a fulfilling life of over 70 years, ~60 of which were spent in an iron lung following a childhood bout of polio. In fact, the idea for this topic on how I deal with (far lesser) disappointments came from my musings of this book!

 

Each painting has a story, one that I strive to tell here. Since many of them have to do with my journey with fibromyalgia, 20% of all yearly sales income from my paintings will go to the American Fibromyalgia Syndrome Association (AFSA), who fund research into this poorly understood condition. If the paintings and/or the cause touch your heart, as they do mine, please feel free to contact me through my Facebook page for more information. Thank you for accompanying me on this journey!

Seize Each Moment

Life has taught me many new lessons since I developed fibromyalgia. Perhaps one of the most important ones is to seize each moment while I still have it. You never know how long a good period will last. Do not put off for tomorrow what you might have the chance to do today.

I do not mean the statement above as a call to action on a good day. I know only too well how that can result in overwork and a subsequent flare. I mean it over a much longer time, sort of taking a bird’s eye view of my life so far.

A heightened pain response and reduced energy quotient with FM has meant that many of the things I used to be able to do are now off-limits. Yet reminiscing about my past abilities do not cause me nearly as much grief, as does the regret over not making better use of my healthy years while I had them!

There were so many things I had always wanted to do! Most of those things did not need to happen right then. They were just hobbies or skills I wanted to develop for fun – like horse-riding, scuba-diving, and many others. None of them made any direct impact on my education or career. So for a long time I put them on the back-burner and focused on school, on building a career, on all the “adult” things that you are supposed to do.

We do that a lot, don’t we? We put off the things that are for pleasure in order to tend to the necessities of the moment. After all, there will always be time for pleasure “later”!

I too felt I could always do those things later – later, when I am more settled, have more free time, and more expendable income. I was young and healthy, and felt time was on my side.

But how utterly wrong I was! 

My first realization of this came a couple of years ago when I got into archery. I enjoyed practicing the stances and getting the form right, more than simply hitting the target (which I was pretty miserable at but felt would improve as my form got better). I never got that far though. Soon, my muscles started to react violently to my drawing and shooting. The fatigue was often debilitating at the end of a practice session. After a few months of struggling through, I was forced to largely give it up.

Since then, the dominoes have continued to fall. I found that sitting astride a horse, even for a few minutes, is quite painful for me now. Hence I am forced to face that any equestrian dreams I may ever have had must now be buried as well. Then there is my long-held dream of scuba diving . . . I can barely even carry my purse for a few hours without my shoulders getting angry with me, so carrying scuba gear feels out of the question at the moment!

The recognition that I may never be able to dive hit me the hardest, because I was finally so close to having the time and the money to do it! Though the schools I looked into were more worried about my asthma – most seemed to not even know what fibromyalgia is – I knew the latter was going to be a much bigger problem for me. Right around the time I started looking into training programs for scuba diving, it seemed like Ms. Fibro stopped being a house guest and had decided to move in for good. It is hard not to feel the unfairness of it when you reach a finish line of sorts, and after you get there, the powers that be decide to move it farther back, somewhere beyond the horizon.

Yet, I feel I cannot give up! I must strive on to the next finish line, wherever that may be! When there feels every reason to just stop in my tracks, I am driven on by hope.

The hope is on many levels for me. On one level, I hope that one day I may still be able to get scuba lessons, or ride horses for short periods of time. On a deeper level, I hope that I can treat my run-in with fibromyalgia as just another bend in the road of my life. I have always hungered for new and varied experiences; so I hope that I can cherish the current one with FM, and learn from it; maybe one day even rise above it.

And for all future dreams and desires, I hope to know better than to think that I will always have the time for them “later.”

I hope to be able to seize each moment I have, and make the most of them, regardless of the moment itself!

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: Admiration

Fibromyalgia is considered to be, at least partly, a genetic disorder. When I think of my family, I cannot think of anybody who may have suffered from this. But I also recognize the possibility that it may have gone undiagnosed in a family full of arthritic people, especially since it is a relatively new diagnosis, and even now some doctors debate its validity.

With that in mind, I am reminded of my mother, who did inherit osteoarthritis from her mother, and has lived much of her life in pain. Though most of her pain was concentrated on the legs, I now wonder if she had some milder form of fibromyalgia since her pain started at a very early age. Even now, I understand that her arthritis is in the relatively early stages, which may or may not explain how much pain she is in, and how much trouble she has walking.

Despite all of that, she is one high energy woman! She can pull all-nighters like any teenager in a college campus and make it through the next day and a half before crashing. Although she is sometimes slow and needs to hobble, she is extremely social and takes part in every activity. I have almost never heard her complain of the limits her pain set for her. In fact, I am not sure she let her pain limit her at all!

As my own mobility has declined recently, about two decades sooner than my mother’s did, I am more in admiration of her spirit than ever. I admire her ability to take it all in her stride and never let the pain or discomfort stop her from living her life on her terms.

A few days ago, my mother celebrated her golden-jubilee birthday. I painted her the featured imageLady with Magnolia (11X14, oil on canvas). That lady in the painting is, indeed, my mother. Along with being a birthday-ode to a flower-loving woman, the painting (which I found quite challenging) was my way of expressing my admiration for a woman who has inspired me to always rise to every challenge life sets before me.

As her daughter, I hope that I never let my pain limit me from achieving the most important goals in my life. And I hope to be able to always define myself as an individual with several qualities along with chronic pain, instead of letting the pain define me.

Love,

Fibronacci