Seeing a flare to its end (or what I hope is the end anyway) is a feeling truly out of this world!
After being stuck in the tunnel for so long, to finally see some light at the end, is a delightful feeling.
Featured image: Creation, oil on 18X24″ canvas (available)
And yet I struggle with the thought that this is as good as it’s ever going to get. For everyone else, life expands, they incorporate more and more experiences as they move forward. And I am happy if it simply doesn’t contract any more! I move forward too, but always against the wind, and always aware of the limitations.
And yet, as a human being, we register differences in condition more than so than the absolute value of it. This means that despite all the limits placed on me, my instant reaction is one of pure joy, an expansion of consciousness, to realize that I am improving from a worse-off state. That what I am improving to is what most people would consider “lazying” bothers me only when I think about it in more intellectual terms, ignoring my emotional reaction to it.
I realize that my initial happiness is only dampened because I still compare my state to that of other healthy people my age. I compare it to what I used to be at one time, what I remember feeling like but haven’t felt like in a long time. But with a chronic condition like fibromyalgia, my world now spins at a different speed than it does for others my age, than it would have for me if I hadn’t developed this condition. It is not fair to compare apples to oranges.
I have learned to see that slowed spin rate on neutral terms — it has some good and some bad, just like there would have been had my world kept revolving faster. But sometimes I can’t help but feel that the existence of the difference itself is somehow mocking.
At one time, I thought I was closer to accepting my situation. And I was, but only under the circumstances I had grown comfortable in. As my circumstances changed, I realized I am on this journey anew.
Ever reaching for the light . . . thinking I feel its warmth . . . but then my world takes another spin, and I am back in the dim, reaching for the light again.
The painting in the featured image explores many of these emotions that expand through time and space. I am sure everyone has something they are struggling with, where they feel they are locked in a tunnel, and are forever reaching for the light. I think of that when I feel I am fighting an unfair battle, and try to not feel so alone in it. I try to think of the progress I am making, and remind myself to simply breathe.
Perhaps the important thing is not to win the battle, but simply to keep fighting it, and fighting it well. And all the while allowing yourself to feel the joy of small victories, however small they may be, just to feel like it’s not all in vain.
Each painting has a story, one that I strive to tell here. Since many of them have to do with my journey with fibromyalgia, a fraction of the sales 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 here or through my Facebook page for more information. Thank you for accompanying me on this journey!
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.
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.
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.
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.
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.
As my husband has been known to say, “thepoint 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.
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.
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:
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.
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.
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?
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.
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.
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.
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.
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!
Do you open your present Christmas Eve or 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.)
Favorite Christmas meal or treat?
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!
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!
I sincerely wish that the end of the year brings all my friends much happiness and loads of spoons!
I ran, and I ran, and I ran, until I could run no more. I was at the edge of a cliff, and the only way forward was down. The waves roared below but I had no choice. Down, down, down I went. I felt the ocean breeze spray my face. Yet I did not hit the rocks. That’s when I realized, I could fly!
In fantasy terms, that largely summarizes the last year or so of my life. After struggling with a bad fibromyalgia flare all of my last semester at graduate school, I was at the end of my tether. I realized I needed to take a break before continuing on to any new work in order to prevent a complete collapse.
It was a tough decision for me at the time. It had been nearly a decade since I was on any vacation longer than a few weeks. I was concerned that while my body might feel better during a period of sustained rest, my brain would feel “wasted” without any brainy-work to do. At the same time, I was facing a lot of judgement from my professors who were not privy to my physical problems, and were convinced the break would ruin any prospects of a career. I was also worried that without something substantial to occupy my mind, I may be too focused on the pain and feel the worse for it.
Not knowing how I was going to react to an indefinite period of unemployment, it was largely taking a leap of faith. But as it turned out, most of my worries never came to pass. And in the process, I even learned a thing or two about myself!
So here are five things I learned about myself when I stepped off a ledge into the dreaded unknown:
1. I can actually enjoy taking a complete break from work for a while!
It certainly took a while — at first I was just very stressed about not having a career direction — but then slowly, I was able to embrace the lack of all absolute obligations, deadlines and requirements! Instead of feeling wasted, as I feared I would, I felt more open. Once I got comfortable with not having anything particular to do, I felt my brain slowly creep out of its “lefty” mode and start spreading its wings! I felt more creative and free, and thoughts and ideas flowed in and out of my mind more easily. I loved the peace and quiet, the serenity of the guilt-free time to think and write. Now that all of my energy wasn’t spent working, I had more energy for other things (like, as silly as this might sound, washing my hair!).
2. It is impossible for me to be bored.
I know when I first floated the idea of the break, many well-meaning people thought I might get bored. I wondered about it too. But as it turns out, my mind is too full of things to ever be bored! I always have something going on in there — perhaps a new idea for a painting, or a blog post, or even a future book! Most of the time my mind is full of reflective, meditative thoughts about both the world inside of me and that which surrounds me. My home is practically a library, so I always have a stack of books I am working through next to my bed. My capacity for imagination may be endless when I choose to engage in it. And I am surrounded by both instant access to knowledge (thanks to the internet) and a mind that voraciously craves new and varied information about a diverse set of topics. So, as I learned, it is impossible for me to get bored as I am engaged in too many activities at any one time, even if I don’t move a limb!
3. I can get too inward-focused for my own good.
Truth be told, given a choice of living in the “outer” world and the “inner” world, I would choose the “inner” one any day. And as I got all comfortable living in that “inner” world last few months, I realized that is also a problem. As someone who has always suffered from social anxiety, it has taken me years of practice at being around people to learn how to function properly in the world. It is never comfortable, but it is an important life skill. Yet now, I seem to be using fibromyalgia as an excuse to get more and more away from the outside world and turn back inwards. Without any definite obligations to attend to, I feel especially free now to just give in to the regular ups and downs of the condition, and just stay in and recoil into my own world even more. This can begin to feel too comfortable after a while, something which, ironically enough, makes me quite uncomfortable! So I learned that I need things that push me against my instincts and challenge me, so life stays fresh, interesting, and even a little challenging all the time!
(Besides, neck strain from too much reading is contributing to some killer headaches last couple of weeks, so it is clearly time I got out and did something else!)
4. I am more OK with leaping into the unknown than I had thought I was!
When I was first offered my current job with the state government, I was not sure about it at all. I was afraid it will take me too far away from biology proper. But ultimately, after a lot of deliberation on other potential options, I decided to take the plunge. One of the things that appealed to me about the job was that I knew nothing of the specifics of what I was about to do! That was a good thing, because I did not know enough to know what to be stressed about! And I realized that I love this feeling of the “beginner’s mind” that can only be accessed when exploring the complete unknown. This is how I felt when I first walked into the research lab as an undergraduate that I eventually graduated with a Ph.D. from! I knew nothing about doing science, so I was eager to learn all I could. With an open mind, I was able to think about what I was learning without the restrictions that come with expertise. It was a feeling of freedom, of possibilities, of growth, and of accumulating life experiences — all of which I dearly cherish. Now I feel ready to inhabit the “beginner’s mind” once more. I have no real clue where this unexpected path will take me in the future, but I am in for the ride with an open mind.
5. I was ready for a major change.
After spending several years working as a bench biologist in academia, I will be a data scientist for a government agency. That is about as different as different can get, and I remain surprised the opportunity even came by me! But, I feel ready for it. I feel I am too young to cage myself into a narrow realm of possibilities. I had stayed long enough in academia to recognize the good, the bad and the ugly in it. It was time for me to explore a different setting now, a different field. My interests are too widespread to be constrained into the narrow niche that a standard academic career demands. So if I am going to play outside of the academic playbook, I would have to create my own paths into a non-standard career. I feel like this job out in left field is the first step in that direction.
For a fiercely analytical person, who likes to weigh the pros and cons of everything, taking a leap of faith can be very difficult. This was especially true of me in the case of my break from employment, because it conventionally bodes ill so early in one’s career. But at the time I had few other choices, and luckily, everything turned out just fine in the end! Plus I really appreciated having the time to exclusively manage the nasty flares that have gripped me most of this year. So I wanted to write this post not just as a future reminder to myself to not be so afraid of doing the crazy “unthinkable” thing, but also as an encouragement to anyone else who may be in a similar spot as I was back then.
If you’re feeling iffy about the jump but it’s edge of your cliff, close your eyes, and trust your wings.
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!
Aside from the fact that they are simply gorgeous, the glowing light also signifies a lot of hope for me. First, the warm colors in the light of the setting sun has a psychologically uplifting effect. And second, on a more philosophical level, sunsets signify a state of transition, where you are standing at the threshold between the old and the new. A state of liminality. The very nature of the sunset marks the end of an old, and therefore by extension, the beginning of something new! It’s a beautiful close to what once was, and invites you to think of what the future will bring.
Featured image: Twilight’s Last Glow (oil on 6X6 canvas; available)
It was about 7 years ago that I first got into academic research as a career. The field of epigenetics fascinated me: it is the study of the various modifications on our genetic material that fine-tune how the genes actually behave. If you think of the DNA code as just the lyrics to a song, then the epigenetic modifications provide the tune, so you can actually sing the song. I was enthused enough to learn more about the subject so that I joined a research lab that studies the same. Over the next 7 years in that lab, I first completed an undergraduate honors thesis, and then a Ph.D. dissertation.
All that time I was on a single-lane, yellow brick road to become a tenured academic professor in Oz. I worked hard since the junior year of undergrad, often working long hours without pay, paying all the seemingly appropriate dues for a supposedly cushy future. But I was devoted to the deity called “science.” I knew the sacrifices I would have to make to reach my goal, and I was ready for it. At the time I felt like that was really what I wanted of my life. And besides, it wouldn’t matter if I did not – I was conditioned to think that that was the only road possible for me after a Ph.D.
So then when I was struck with fibromyalgia, about halfway through graduate school, perhaps you can imagine my state of mind when I felt my dreams had just gone up in smoke. I felt I was now trapped into this very narrow specialized field, educated beyond most jobs, with a medical roadblock in the only credible path to a bright future. In addition, it certainly did not help that my advisor, who had high hopes for me, now thought that I was a lost cause. He had no reasonable advice for me other than to “just deal with it.”
I have now spent upwards of 2 years trying to get out of the dark mindset that my professional life is ruined because I am no longer able to spend 60-80 hours per week working any ol’ time of the day. It has taken a lot of career research, reading other peoples’ experiences of life after academia, and talking to people who were more supportive of my seeking “alternative” routes, to really figure out new possible directions for myself. More than anything else, it has required me to shake off the chains I had put around my own expectations of my future. I had to do some serious soul-searching about what I truly enjoyed about my job, in order to figure out how I could continue engaging in that, in a way that is not so detrimental to my health.
The result has been a liberating feeling that I have a lot more paths to choose from than what I was initially led to believe. I just spent the last year or so considering traditional postdoctoral research appointments, along with “non-traditional” post-Ph.D. options like teaching, as well as jobs in science publishing, government, and clinical laboratories. Some of these are more directly connected with the topic of my graduate training (molecular genetics/epigenetics) than others, but I was not shy about looking into related but different fields like human genetics, environmental health, public health and policy, and forensic science. I even considered options that would require further schooling, such as genetic counseling and molecular epidemiology.
Not all has been bright and sparkly, though, as I sought out new potential directions for myself. I learned that it can be incredibly hard to budge even a tiny bit from your field of specialization, especially after a doctorate. At the same time, I also received enough positive responses to have faith that difficult though it may be, it is not totally impossible! However, it does require you to be honest with yourself about your priorities (both professionally and personally), and keep realistic expectations of your job search. It is possible to carve out a new fork in the road for yourself, but it takes time, perseverance, and a healthy dose of luck.
Despite it not being all glowy, I nonetheless feel like this period of transition after graduate school is like a sunset. It is a time to reminisce about the past as one chapter in my life comes to a close, and to contemplate what new experiences the next one will bring. Nobody knows what tomorrow holds; but for now, as I stand on this threshold, the possibilities are endless!
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 read a beautiful article a few days ago on Crafts, Chronic Illness and Adulting about how happiness is a state of being, and it is our choice to make every day (as much as we can) to seek that happiness within ourselves. I have ruminated much about that elusive state of happiness before, and couldn’t agree more with that attitude.
I feel like happiness is a flame that is burning within us. Sometimes the flame dwindles, gets buried, becomes hard to reach, as daily frustrations take over our minds. It can be especially hard to deal with the everyday when one is also fighting a chronic illness. But in a moment of quiet, it is possible to find that little candle of happiness still burning, underneath all of the tears of anger, sorrow and frustration.
Depression, on the other hand, is the absence of that flame. You can push yourself, just like you push anyway with the pain and fatigue, to do your everyday tasks. You can cover it up with laughs, alcohol, drugs, music, company, whatever you think might make you happy. But really, all of it is to cover up the knowledge that that flame is gone.
I became acutely aware of that as I had to come off some nerve pain medication rather suddenly. The burning in my arms, trigger points, and spinal cord became more insistent, along with my other FM-related woes – but that was expected. What was a little unexpected (and perhaps stupidly so) was the effect it had on my mental health. I felt a return of my depression and anxiety like I haven’t felt in a decade.
Then funnily enough, I saw the light (again) on one of my absolute worst days. My muscle spasms were so bad in my upper back that I was largely immobilized from neck up, and I could only move my right arm with intense stabs of pain with each movement. Yet, I had promised to bring my friend’s daughter to the circus, and I did not want to cancel on an 8-year-old. So I doused myself in every pain relief method at my disposal, and I went.
Despite all my pain, the joy that emanated from the child at her first circus took precedence over all my misery. I feel like she not only stopped me that day from delving deeper into the hole that I was in, but she actually pulled me a little bit out of it!
That night was one of the worst nights I ever spent. I was practically paralyzed from the pain, and the only reason I did not go to the emergency room is because it would have caused me more pain to get there than just languish in bed.
And yet, that night I was able to find a little bit of the happiness spark, like the flickers of light from a flint, as if a caveman was trying to start a fire. It was like the first dim light that touches the earth after the darkest part of the night. As if from the ashes, a phoenix was trying to emerge!
That flame then grew stronger a day or so later.
I had spent another night in intense pain, so much so, that my husband said I moaned aloud in my sleep anytime he turned, or even touched the bed. He fed me a pain pill, and then spent the rest of the night on the couch to minimize my discomfort. I did not learn of this until the morning, and was filled with so much gratitude when I did.
As I learned that day, gratitude is a like a breath of air on a little spark, a little blow of oxygen that can stoke the happiness flame, and help it realize its potential as a bright source of light.
Although you don’t need much to be happy, on the darkest of days, it helps to remind yourself of all that you do have to be happy about.
I have much to be happy about. I have a husband who is made of the stuff of dreams, I finally have access to my nerve pain medicine again, my pain is slowly getting better (progressively fewer screams have been heard by my neighbors over the last couple of days), and I have a very understanding doctor. Not to mention the friend who trusts me with her children, on whom I can shower my adoration as if they were my grandchildren, and with whom I can connect and find tender joy.
Yes, I also have many challenges that I am going through right now, but I have a lot more to be grateful for. To be happy for.
So today, now that I have the choice, I will try to focus on the silver linings when I look at the clouds from my window. And by doing so, I hope that window opens into another dimension, one where the flame of happiness continually glows bright within me.
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 theAmerican 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!
This was not the first time that I thought long and hard about what kind of a job would be better when leading a life with a chronic illness: one that is very flexible, or one that has a more structured routine.
There are lots of “pros” to a flexible job, like that of an academic professor or a lab director. You don’t have to be up too early, can rest in the middle of the day, and take time off for flares as needed. But there are “cons” too: you end up working odd hours, and the body often doesn’t know what to expect when. Not absolutely having to do something now, also means it is easier to put it off for later – and the ephemeral “later” may turn out to be a worse time than “now.” This has the potential to cause much stress, which can be a trigger for a fibro flare.
With a more structured job, days are better-planned, and there is a chance to settle into a reasonable routine, and perhaps reduce the frequency of flares with better pacing. But when flares do occur, it is harder to take time off. The other downside is that constant working during the day, and the pressure to stick to the routine, can get tough on the body, especially if you’re prone to fatigue.
On that note, I read two very poignant articles. The first is a great piece on the importance of routine, on a blog I always enjoy visiting, Invisibly Me. Our blogger is fairly convincing in how routines can be helpful when dealing with a chronic illness, and gives some great tips on how to boost your routine as well.
And the second is the story of a recent Ph.D. grad, on the blog ErrantScience: Clutter, who moved on to a “regular” (aka, normal 9-5) job and gave a deft comparison of the two. Her conclusion: the grass is always greener on the other side! Somehow, despite all arguments and my own better judgement, I think I will always agree with that!
As for me, during my Ph.D., I recognized that maintaining some amount of routine was critical for pacing. That routine involved allowing my body to “thaw” in the mornings (not rushing it before it was ready), working mainly during my best hours (10 AM to 7 PM), and using the evenings for rest (i.e., not bringing work home). I tried to keep a routine for painting and blogging as well, but that sort of fell by the wayside. Overall, I felt the routine helped me progress towards the Ph.D., while also not working myself too far beyond what my body could handle.
And now that I am done with graduate school, and have no set responsibilities, I feel like I am getting a whole lot of nothing done! I was planning on keeping up with my blog and painting better, studying for some technical licenses, finishing up my leftover papers from grad school – and of all that, I am only making very slow progress on that last one (and probably only because there’s a deadline looming for it). I suppose after working long and hard for so many years, I shouldn’t begrudge myself the rest and relaxation. It truly has been lovely to lay down in the afternoon (a time when I often experience an energy slump) and just read for pleasure! But I dislike the way I am being unproductive in all other ways. So clearly, some level of “work structure” is important so I don’t rest away the entire day.
However, I am also the kind of person who feels stifled by too much routine. I feel a bit like the fish in a bowl, bound by structure, doomed to swim round and round. I like a bit of spontaneity, freshness, and interest in my days – and too much routine is just not interesting to me. Not to mention, if I wake up feeling particularly crummy, I like to be able to go in to work late or take the day off, and have the freedom to make up that time in other ways. Losing that kind of autonomy might push me to work through escalating pain, instead of “calling in” and admitting I am sick (I could hear the voice at the other end going “AGAIN?!?!?!“). All in all, I just don’t see pattern working out so well.
And yet, I do like the feeling of getting work done in a timely manner (which requires some level of structure). Also, my body does usually fare better when it knows what to expect, rather than when it gets pushed in every which direction. Pacing, by its nature, requires a routine, and it has been proven to make life productive and less painful for many a chronic illness warrior.
I guess the bottom-line is that both flexibility and routine are important when dealing with a chronic, unpredictable condition like fibromyalgia. Ideally, I envision a job with a reasonable amount of autonomy, so there is the flexibility to call my hours. But with a job like that, there needs to be sufficient self-discipline to be able to set a routine for myself, so I can get all the work done, but on a pace I can handle and with allocated rest times that I don’t ignore.
I realize that it may be a tall order to find a job like that, where there is a mix of the best of both worlds. Until I get there though, that grass will always be greener on the other side!