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.
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!
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.
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!
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!
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
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.
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.
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!
*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!
I am so grateful to have been nominated for the Unique Blogger award by Mackenzie over at Life with an Illness. She has an awesome blog where she writes about her experiences with chronic illnesses. Check it out for some positive vibes and helpful tips!
Here are the “rules”:
Share the link of the blogger who has shown love to you by nominating you.
Answer their 3 questions.
In the spirit of sharing love and solidarity with our blogging family, nominate however many people for the same award.
Ask them 3 questions.
Like I said earlier for the Real Neat Blog award, I love these awards for their ability to connect us bloggers and help us get to know each other better. So here are my responses to Mackenzie’s questions!
What makes you happy? (Is it a person, a hobby, or food?)
It would definitely have to be a person that truly makes me happy. At the risk of sounding super cheesy and a hopeless romantic, that person is my husband. However, my hobbies (reading, writing, painting) come in a close second.
What is one goal you want to accomplish?
I have actually been giving this topic a lot of thought lately. It seems too simple to say that I am looking for a fulfilling career for myself in the long run (though I am). But the truth, as usual, is a little more complicated. I’d say the one goal I’d like to accomplish would be to find my authentic self and live an authentic life. I don’t know if a goal like that can ever be truly accomplished though. Perhaps “accomplishment” in such matters is just keeping up the continuous pursuit of the goal. If so, I’d like continue the search all the life.
If you could talk to your teenage self what kind of advice would you give yourself?
I lived kind of a double life as a teenager. My inner world was quiet, that of a poet; it could be interesting and colorful but oftentimes it was dark and hopeless. I struggled with clinical depression and anxiety disorder as a teenager, suicidal at certain points. To that person, I would like to say. “This too shall pass. Just stay alive; it will be worth it.”
The way I hid my dark inner world was by being angry and rebellious on the outside. I never fit any societal mold, and I was (and still am) proud of that. To that person, I say: “Be bold, live wild! Have faith that your crazy maverick attitude behind the quiet, mature mind will treat you well in the future.” Too often as elders, we try to quench the sizzling fires of the young because it seems too much for us to deal with at the time. But those fires slowly wind down with age (or in my case, illness) anyway. I would like my teenage self to know that everything she did (good and bad) got me to where I am today, so keep that fire burning!
My nominees (blogs I would love for you to check out!):
Though I like having nice things as much as the next person, I have to admit that I am more of a sucker for experiences.
While material objects you acquire may be permanent (in the practical sense of the word), it is human nature to slowly just get used to its presence and take it for granted. And then that grand old antique grandfather clock you coveted forever until you found it on a killer deal loses its appeal, and its ability to make you happy. Even worse, acquired things may only be temporary (like money), in which case the happiness they bring is doubly short-lived and may even be followed by some misery!
Experiences, however, are usually by nature temporary — and yet, they are timeless! Think back to a wonderful family vacation, or a funny incident that happened to you, or even a particularly interesting class you took or a memorable event you participated in. Think back to a time when you learned something new, or saw something in new light, gained a different perspective, or found a new way of looking at things which you had never considered before. Chances are, simply thinking back to the family vacation brought an image to your mind, or remembering that funny incident made you chuckle. All of these experiences were in the past, their time come and gone, activities done and over with. And yet, you carry some essence of them with you forever!
Experiences, unlike physical objects, also have the potential to teach you things and promote self-growth. This is perhaps almost more true of unpleasant experiences than pleasant ones, a chronic illness for example. I remember in Michael J. Fox’s autobiography, Lucky Man, he said getting Parkinson’s disease was one of the best things that happened to him. Until I gained some acceptance of fibromyalgia, I could never have understood what he meant. But even in dealing with what has been a far less debilitating experience than Parkinson’s, I have learned and grown so much that I am kind of glad it happened to me. Sounds strange, doesn’t it, given how much I gripe about it? But I feel like the griping and then getting over it is all a part of the experience too!
Particularly, the experience of going through a competitive grad program with FM has taught me an important lesson in life. That regardless of what others say, think or do, you’ve got to be true to yourself! Your self-worth cannot hinge on others’ (negative) evaluation of you. You cannot educate everybody, not even when you talk the science behind your condition to scientists. When you feel alone, instead of feeling dejected and lonely, use that space to spread your wings and find your own flight. Do not feel guilty if you choose to use a particularly good day to turn your back on the world and enjoy it simply for yourself! There are too few of those in our lives to waste them on others’ expectations of how you should be spending them, rather than how you want to be spending them.
Perhaps all these thoughts combined made me particularly fond of the featured image, which I clicked on a recent trip to the local zoo. Here’s a pelican who doesn’t give a hoot about the world, he’s without a care except to just make the most of a beautiful day! The photo, a bit overexposed, is perhaps technically flawed, but you can really feel the sun on his back, the splash of the cool water, and his ecstasy of motion.
It is a reminder to live life unabashed and cherish small moments of pleasure.
A reminder to not let imperfections tarnish the timeless beauty of the experiences.
Some time ago now Lavender and Levity nominated me for the Real Neat Blog award, and I am just getting around to it. (And of course, since Halloween was yesterday and it’s such a fun holiday, I had to do something with that, hence the creepy logos!)
Let me just start by saying thanks; I am so grateful to have been nominated for this blogging award! It’s always gratifying to know your blog is being read and that somebody enjoys it enough to nominate it for an award, thus encouraging others to check it out as well. I also enjoy how these awards make for a great way for us to get to know each other more informally. So here goes!
The ‘rules’ of the Real Neat Blog award are: (feel free not to act upon them if you don’t have time; don’t accept awards; etc.)
Put the award logo on your blog.
Answer 7 questions asked by the person who nominated you.
Thank the people who nominated you, linking to their blogs.
Nominate any number of bloggers you like, linking to their blogs.
Let them know you nominated them (e.g.: comment on their blog; linking their blog notifies them too I believe)
Here are the answers to my 7 questions:
What natural disaster best represents you?
In public: Snowstorm. I can be very cold and freeze people out if they aggravate me, or if I feel they are a negative impact on me.
In private: Volcano. I can sometimes erupt and spew lava with some ferocity, typically after small aggravations have been brewing underneath and building for a long time.
If you had to pick one of the two, would you rather be too hot or too cold?
Too cold. (I am not fond of the heat at all!)
If you won a trip anywhere in the world, where would you go?
Hmm, maybe to some of the Caribbean islands! I visited the Virgin Islands a few months ago and fell in love with the ocean in that part of the world.
If you could only have one of the following in your dream home, which would you choose: a housekeeper, a personal chef, a personal assistant or a landscaper/gardener?
Housekeeper. No contest there! My husband is a great cook, and I can be my own PA. I can even do some gardening if needed. But cleaning? Ugh! That’s anathema to me!
What’s your favorite drink?
There’s too many and they are too varied to list just one.
Non-alcoholic: Other than tea (including herbal) and coffee, I am currently loving coconut water, kombucha (cultured tea with probiotics), and tamarind soda.
Alcoholic: I love most cocktails (White Russian & Sangria are definite faves); Hoegaarden is a particular favorite in beer; as for wine, I am reasonably fond of slightly dry, not too heavy-bodied red wines, but Auslese Rieslings are probably my favorite (somewhat sweet, fruity, white wines that are a delight just by themselves or with fruits).
You should have been in bed an hour ago, but you are still on the Internet. What non-blog webpage is open on your browser?
Netflix; though technically, it’s open on my TV through our Nintendo Wii. If I’m on the computer, probably YouTube.
Why do you think you were nominated? (Hint: it was because I felt there were good things about your blog, so positive answers only! I want you to humble brag!)
I had to ask my husband to help me with this one, and he said I have a way of digging deep and sayings things which are difficult to put in words; that my posts are very honest, well-thought-out pieces about living (not just surviving) with a chronic illness. Ideally, I would also hope to fill a niche with my blog about scientists with fibromyalgia/CFS/similar invisible illnesses. There’s not very many of us, that I know about, who openly talk or write about going through graduate school in the biomedical research field (which is very competitive and infamous for long work hours, and hence not friendly at all to tired old slow-pokes like us). It is my hope that my blog is a window where people can read about the experiences of one scientist with fibromyalgia, and hopefully help others in similar situations as myself.
My nominees/Blogs I’d love for you to check out:
I know a lot of people don’t participate in these awards, so don’t worry about it if that’s the case. If you do, I would love to see your responses to the questions below and get to know you more in a fun way!
2. If you could swap lives with someone for a day (living or deceased), who would you swap with and why?
3. If you won a trip anywhere in the world, where would you go?
4. If you could only have one of the following in your dream home, which would you choose: a housekeeper, a personal chef, a personal assistant or a landscaper/gardener?
5. What’s the one thing that annoys the crap out of you?
6. You should have been in bed an hour ago, but you are still on the Internet. What non-blog webpage is open on your browser?
7. Why do you think you were nominated? (Hint: it was because I felt there were good things about your blog, so positive answers only! I want you to humble brag!)
I hope you enjoyed getting to know me a bit more through these answers! And I look forward to the responses of my nominees, if they choose to participate. Thanks again to Lavender and Levity for her nomination.