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.
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!
I had initially intended my last article to be the final chapter in the Acceptance series of posts. However, recently a friend asked me a very poignant question borne of that post, which prompted this one. It is sort of an extension on my last post on “how to seek acceptance,” in answer to her question:
How do you fight the denial that creeps up even you mentally decide that acceptance in the best way forward?
In my best attempt at a response, I thought I would share my story, with more personal details than the previous one, about how I fought denial while in search of acceptance.
If you’re a frequent reader of this blog, you probably know that I used to be a very ambitious, go-getter type of person. I worked hard, and for the most part, enjoyed working hard because I enjoyed my work! The body was just a vehicle to get me about, nothing that needed any tremendous amount of attention. The idea of “listening to the body” was fairly foreign, it sounded “whiny” to me, like a hypochondriac. And this attitude meant I landed myself in frequent flares because I would ignore my body and what it was trying to say to me.
My avoidance of what the body was trying to tell me was not without reason. I felt like if I were to listen to it, I would never do anything, because I was always tired and achy and never really wanted to do anything at all! Every morning was a struggle just to rise and dress for work (and it kind of is even now). Mind over body, I kept telling myself, however. I just needed to will myself into breaking through the chronic illness mode. But the walls proved harder than I expected. And I almost always lost that battle.
It took me a lot of soul searching to realize that listening to my body is not being beholden solely to its desires.
I was afraid the latter would trap me into the “this is all that is possible” box, and I would not be able to see opportunities outside the box, even if they beckoned at me. I refused to accept all that my body felt or felt possible of it, but I realized that I needed to hear what it said. Then I could evaluate it in my mind, and decide on the best course of action. Mind and body needed to go hand in hand, not fight against each other. The mind still rules, but uses the body’s counsel, as it were.
And that, in a nutshell, is the essence of what “acceptance” has meant for me: Listen to the body; push it but without pushing it over the edge. The mind is still the king, the one who ultimately decides what to do, but one who uses the queen’s (body’s) guidance and counsel. It does not have to always do what the queen wants, but the mind-king must keep the queen-body in the back of his mind so as to not offend her. This idea of acceptance is distinct from “denial,” where the mind rules entirely by itself; and far from “resignation,” where the chronically ill body calls all the shots.
What convinced me to finally embrace this meaning of acceptance (and quit denying my body all of the time) were three pointed realizations, that I arrived at through many months of soul searching and internal dialogues:
1. The first thing I realized is that my old state is not coming back – and certainly not if I keep fighting myself like this!
Educating myself about FM and chronic fatigue helped me the most to come to this realization. Current understanding suggests that these are disorders of central sensitization. A maestro from hell, the brain and nerves in a fibromyalgiac have become so good at shooting off pain signals that they overreact to every perceived stimulus by doing just that. Fatigue and sleep quality are believed to linked to similar pathways, thus making us feel tired all the time (as if just fighting the pain wasn’t tiring enough!). The upshot of learning the science behind the condition was the recognition that fighting my body, and in turn having more pain because of it, is only setting me up for long term failure. The more practice the nervous system gets at sending pain signals, the better it is ever going to get at it by strengthening all those overactive pain-response pathways even more. Therefore, in relieving my body of as many perceived pain signals as possible, like allowing myself to rest as needed, I am really doing myself a favor. Perhaps, in time, it might even allow the brain a chance to “cool off” its pain response a bit.
If you are curious to learn more about central sensitization, check out this video in the blog Sunlight in Winter, whose author does a beautiful job of spreading awareness for the science behind the syndrome in patient-understandable knowledge.
2. The knowledge of the science behind central sensitization made me realize that I needed a truce with my body. And the said truce is my only hope of getting my life back.
It may not be the life I had initially planned, but if I didn’t make some kind of peace with my disorder, I would not have any kind of life at all! Getting this through my thick skull was a huge step towards acceptance for me.
This truce was not giving in to the disease, or resigning away to the illness, but simply making a conscious decision to listen to my body more. Like most things in life, it is of course easier said than done. I have struggled with it off and on, along with my faith that this is the sensible thing to do, and I am still in the process of learning how to listen well.
As a scientist, I am quite used to observing the outside word, our experimental universes. But rarely do we use ourselves as the subjects, while also trying to be the objective observer of ourselves! I have found that it can be quite difficult at first, and really easy to slip up on even after doing it for a while. But what has probably helped me the most to detach and observe myself in as unbiased a way as possible is mindfulnessmeditation. I have trained myself to keep a piece of me in my head to keep a watch over myself, my thoughts and my body. Sometimes this watchkeeper may bring to my attention my negative train of thought, or at others, remind me to relax my shoulders and fix my posture.
Many of my blog posts emanate from me tapping into this watchkeeper to see what she has observed, and then the posts are the results of my analysis on those observations. She has given me many insights into my thoughts and feelings, especially on the more unpleasant aspects of dealing with a chronic illness. I am not a believer in wishing negative thoughts and feelings away (I know from experience they don’t go anywhere, they just fester under the surface). So I decided to work through them by writing/blogging. Aside from being cathartic, I have also come to greatly appreciate the support of others in the chronic illness community, especially those of us who are also young, and face that additional stigma of “oh-but-you’re-so-young,-how-could-you-possibly-be-sick.” Being around others with similar conditions and associated feelings, and being able to share in their challenges validated my own.
Through my blogging experience, I also realized that being surrounded by accepting people also promotes acceptance in one’s own heart. You see that a chronic illness does not have to be the end of the world, that it is possible to fight it without killing yourself (metaphorically) in the process, and that there can be a life after chronic illness. I think all of these factors played a part in my being able to fight the denial that kept creeping up from time to time.
3. As I slowly came to terms with the idea of acceptance, I realized that not everything about my new life with FM was bad.
It’s just that the benefits in my new life aren’t always the things that are thought very highly of in our fast-paced modern society. For example, I am now a much calmer person, more patient than I used to be. But that permanently changed how my boss views me, because in academia if you’re not a highly ambitious overachiever, you might as well be nothing. But in my personal life, or even my professional life (as a teacher and a mentor), I realize the patience that I have gained has served me well. I feel, overall, more balanced in many ways than before, when I lived a lopsided workaholic world all the time. I have been able to reconnect with my husband, and feel a measure of mental peace that I never knew could be possible.
This recognition, that it’s not been all bad since FM struck, was a major leap forward towards accepting my my chronic condition.
These three major realizations, mostly arrived at through internal deliberations, were my stepping stones to a point where I could stop kidding myself that the chronic illness doesn’t exist, or that I can somehow “wish it away.” Once I had these down, the activities I described in my last post helped me work through my thoughts and feelings (many of the ones I have talked about here), which helped me inch closer every day towards embracing acceptance.
Acceptance of a chronic illness, however, is a very private matter, and can mean something different to each sufferer. So I, by no means, wish to suggest that this is a fool-proof how-to guide that should work for everyone. This is just my story. It is my hope that reading this story might trigger thoughts in someone else in a similar boat, so that they can make their own journey, taking their own private paths, towards their own personal goal of acceptance. In there, lies my satisfaction as a chronic illness blogger.
The journey towards acceptance of a chronic illness is a long one, with shifting goalposts, and an uncertain finish line. It takes strength and persistence to overcome the loss of a life that could have been, and embrace a new one. All of us who have been battling chronic illnesses are full of stories of how we conquer it everyday to find our center of gravity and come to terms with a difficult situation.
In the last few weeks, I have deliberated much on how I have come to accept that a chronic illness invades my body. Yet, in accepting the illness, I have not allowed it consume me, refusing to give in to a “fibromyalgiac” identity. It may be one of my identities, but I am made of so much more that FM cannot extinguish within me! Accepting that dichotomy within me has been key in being able to nurture my health as well as my other interests that make up the rest of me.
To wrap up my Acceptance series of articles, then, today I talk about what helped me achieve a state of acceptance on some consistent basis, and some of the things that helped me embrace my new life with fibromyalgia.
1. Education:It can be hard to accept a strange, unfamiliar diagnosis as the illness that we suffer from. Therefore once I had a name, a diagnosis, I could look up, I tried to learn as much as possible about my condition. As a scientist, I was already trained in reading primary literature. So I hit the medical journals, and sought out the latest, most definitive research on fibromyalgia, in an effort to know all there is know about the condition. This helped me make sense of the myriad symptoms of fibromyalgia, which in turn informed the problem-solving approach that is central to my definition of acceptance. It also helped me feel less crazy, and like I had more of a ground to stand on against the “doubters.”
2. Writing/Blogging: It is difficult to accept a relatively rare condition when you feel all alone, dealing with it by yourself, surrounded by people who think you should probably just be able to suck it up. The graduate school environment, in particular, promotes stoicism, which is likely to encourage you to deny anything is wrong at all. This, of course, is a recipe for disaster. Through my blog, I have been able to make friends who share similar struggles, whom I can learn from and support in return, and around whom I can allow myself to admit my “true” state of being. Out here in the blogosphere, I do not have to pretend to be OK when I am really not. I have also found writing to be a cathartic experience in itself. It helps me sort my thoughts out, make sense of what is going on in my head, and create a journal of experiences that occasionally helps me see how far I have come. The blog creates a space which encourages me to acknowledge the struggles that come with the illness, and find ways to overcome them – both of which are, again, central to my definition of acceptance.
3. Focusing on something other than myself:Over time, this has taken various forms, such as helping other people, and immersing myself in a process, such as art or science or writing. It makes me feel connected with something bigger than myself (e.g. art, humanity, learning), which then helps me feel like there is a place for me in this world, even with my illness and all. Especially in helping other people, I find I am able to cultivate more compassion, not only towards others but also towards myself. It refocuses attention away from myself, so my own problems do not consume me. Also, it helps me see that many others have similar or worse problems than my own. In recognizing that, I have felt less alone, less self pity, and more self-compassion. Altogether, it has helped me place myself and my problems in perspective, which in turn has aided in accepting the new life that I have been dealt.
4. Meditation: I have had particular success with two types of meditation: (1) Mindfulness; and (2) Visual Imagery. Each in its own way has helped to bring a kind of clarity in my mind, without which it would have been really difficult for me to deal with my condition. Meditation helped me detach from myself at times, focus and break through the pain on others, so that together, they have provided some perspective on my new life and its new issues. It helped me see my problems as tractable ones, and promoted a kind of adaptiveness, that I believe is key to being able to accept any new (and less than welcome) situation.
5. Seeking the many levels of my mind:We all have the capability of living many levels in our heads. We are, in one sense, our thoughts, which are akin to a film playing on a movie screen. In observing our thoughts, we watch this film. And in being able to change our thoughts, we play the part of the one controlling the projector who determines what film to play. Through cultivating mindfulness into my life, I have come to identify with many parts of myself. There is one part of me that is in pain, another who is observing me experiencing the pain, a third who is controlling what I think or feel regarding the pain, so on and so forth. This exercise has been instrumental in me being able to identify myself as being more just than my illness, which was crucial for me to be able to accept my problems without feeling resigned towards them.
In tandem with each other, these five “activities” really helped me come to terms with the battle with a chronic illness. They helped me make sense of what I was feeling physically and emotionally. In being able to see my problems in perspective, and as tractable, manageable issues, I felt I could give myself permission to accept that indeed the problems existed, and that I am not giving up the fight by accepting their existence. Indeed, by acknowledging my chronic condition, and its associated limitations, I am finally opening myself up to finding new ways of overcoming those limitations.
All in all, being able to accept my current life has brought with it a level of internal peace and happiness that was missing from my life before. I know that happiness and acceptance have very personal meanings for each person dealing with their own situation. Even so, I hope that my musings can help somebody, who is struggling and is in search of peace, trigger some thoughts of their on these issues, which helps them find their version of peace they seek.
A few weeks ago, I was triggered by an certain events to give some serious thought regarding “acceptance” of a chronic condition as a philosophy. And then of course, I had to wonder: why do we seek acceptance in the first place?
On a practical level, acceptance can mean that we are finally in tune with our bodies, and are working it without overworking it. Thus, we are able to find some sort of a steady state for ourselves, where the ups and downs are not too high or too low. This, of course, is a reason all by itself to accept an unpredictable and often brutal illness like fibromyalgia!
But I feel like the true essence of why we seek acceptance lies in its emotional impact.A state of acceptance promotes a state of happiness.
Chronic illnesses are difficult beasts to deal with. I had previously likened fibromyalgia to being in an abusive relationship, in many ways. It is the invisible partner in my life, who beats me black and blue from time to time, often for no apparent reason. Such chronic conditions can be extremely frustrating to try to build a life around.
When one is in denial of a chronic condition, I feel that is akin to an all-out physical battle between the self and illness. The self wants to make no room for the illness; and the illness retaliates with resentment, and wishes to annihilate the self! On the other end of the spectrum, when one is resigned to the chronic illness, they have given up the fight completely, the enemy is camping out in the self, ravaging it from within. Both states leave the chronic illness sufferer feeling very helpless, as they struggles with losing control over their bodies, and their lives in general. Neither is conducive to seeking happiness with a chronic illness.
Somewhere along that continuum lies acceptance. Here, there is no all-out battle; neither is there a simple surrender. It is more of a quiet, deliberate, game of chess between the self and illness. Each calculates their move carefully; and if played right, the self usually gets the upper hand!
So how can acceptance lead to a state of happiness?
1. By offering PERSPECTIVE. Accepting a chronic illness does not mean being OK with half a glass of water, or even necessarily thinking it is “half full.” In my view, acceptance offers a realist’s perspective, where the glass is both “half full” and “half empty.” The chronic illness may have taken a lot from us, but we still have a lot of us left! Accepting the condition means taking both into account. We may have lost our energetic selves and left counting spoons through the day; but we still have our goals and interests! Being able to keep sight of the fact that we remain “ourselves,” underneath the burden of poor health, helps the happiness quotient!
2. By encouraging a PROBLEM-SOLVING attitude. Once we accept the chronic condition, we begin to acknowledge the associated problems and limitations, and then find practical solutions to them. Instead of the illness itself, the focus now is on overcoming the limitations the chronic condition imposes. This problem-solving attitude puts us back in charge! We can begin to plot how to rebuild our lives around the chronic condition. It is a way of regaining some control over our lives that the chronic illness may have snatched from us. Nobody likes to feel tossed around on the choppy waves like a rudderless boat. The feeling that we still have some power to steer our lives in a satisfactory direction, albeit perhaps towards an alternative to the original one planned, is an important ingredient in the recipe for happiness.
3. By promoting INNER PEACE. A combination of the understanding that the chronic illness does not fundamentally change who we are, and that we can continue to be somewhat in charge of how we work around it, promotes a sense of inner peace. We learn to identify that the chronic illness is a part of us, but that it is only one part of us (out of very many)! Once we have made some level of peace with that, it limits self-doubt that is often triggered by others who doubt us and/or our diagnoses/conditions. It all promotes a level of inner peace that I think is crucial to find a state of happiness, if not the very essence of happiness itself.
Most of my “happiness philosophy” stems purely from my own experiences, both from long-term growth as well as brief moments of revelation, followed by long periods of meditation on my experiences. But it’s interesting to see how much of it aligns with the current research on what makes people happy! Yet “happiness” is a very personal thing, with each person having their own definition of what happiness means to them.
But there is also a higher level unity in human psychology. People from almost any part of the world, belonging to any religion or any culture, generally find happiness when they feel like the universe is their friend, instead of it trying to thwart their every move. They find happiness when they can see themselves, and their trials and tribulations, in perspective, instead of feeling like they are being manipulated by unseen hands. And no matter how one defines what core happiness means to them, cultivating a state of mental peace is crucial regardless. In fact for many, that state of inner peace, itself, is what they might call happiness!
It can be very difficult, however, to not feel like the universe is playing nasty practical jokes on you when you suffer from a chronic illness. And cultivating a state of peace amidst the inner turmoil can be difficult indeed. But accepting that illness may be the first step to emotional healing! As I said in my previous post, however, the road acceptance is not a straight path, and the very state of acceptance is along a continuum, and ever-changing like a dune. But regardless, in looking into ourselves to seek it anyway, we might unlock the secrets of finding our secret source of happiness.
“Fibromyalgia is kind of like my logical nature, there’s no point wishing I was different regarding either!” So went my thoughts one day, that landed me in a long reverie about what it meant to me that I had absorbed my diagnosis like so. I had written before about what acceptance meant to me on a practical level. But now I wondered, what does acceptance, as a philosophy, mean to those of us with a chronic illness?
I think of acceptanceas lying on a continuum between denial and resignation:
In a nutshell: The chronic illness does not tell me who I am or what I can do! Keynote:Defiance
On one end, there is extreme denialthat a chronic illness even exists. Often, this results in massive overexertion, leading to increased pain and fatigue. So one rests, feels better, and starts pushing their body’s limits almost too soon after, landing themselves back in a state of flare. The huge hills-and-valleys in the state of their health takes a toll on the mind. Frustration gives way to a strong sense of grief and loss, even depression. Nothing they do feels like it’s enough. They feel inadequate in their new state, like a shadow of their former self. So they do everything possible to act as if nothing happened, and carry on with their old lives, in order to feel like less of a failure. And the vicious cycle continues, amidst a general state of mental and physical anguish.
In a nutshell: My chronic illness is who I am. Keynote:Capitulation
On the other end is what I call resignation. This is where one has lost their mojo, they see no point in fighting the illness at all (perhaps after a long fight with it already), frequently in a state of depression. The combination leads to being involved in too little activity, which can slowly result in deconditioning of muscles and joints, making it even harder to move and participate in meaningful activities. One begins to wonder what is the point of even trying, if that only makes the pain and fatigue worse. They often lose any social circle they may have once had, thus feeling more and more isolated. Loss of job- or hobby-related activities can make it feel like their lives lack any meaning, leaving only a shell of their former selves. All hope for any light at the end of the tunnel — or even an end at all! — has withered to ashes. The resulting mental toll pushes them to retreat even further into their shell, thus compounding the vicious cycle.
In a nutshell: The chronic illness may dictate what I can do, but not what I can be. Keynote: Determination
Somewhere in the middle of that spectrum, I imagine, is acceptance. This is where one recognizes that there is a new kid on the block, namely a chronic illness, that wants to “play” too. The kid can throw a lot of temper-tantrums and really bring them down, but they are stuck with each other. So they may throw a few blows at each other, but ultimately, they know they have to get along — somehow! This is where one makes peace with their body and listens to it carefully, yet they don’t stop fighting the illness invading that body either! Acceptance does not mean that one is necessarily OK with their limitations, but realize that it is to their advantage to acknowledge what they are. And yet, they don’t allow the limitations to define them either! They continue to engage in the activities that lend meaning to their lives, but on different terms than before — on terms their body can reasonably manage. Like a good coach, one pushes the body, without pushing it over the edge!
I don’t mean to imply that these three states are quite as far away from each other as the neat little line diagram might make it seem. It really probably is much more like this:
I imagine acceptance is a point of “happy-medium” that is in a state of dynamic equilibrium. There is a healthy dollop of both rebellion and submission, but they are balanced in just the right proportions so that it evens out. A bit like destructive interference between oppositely-oriented feelings, which each make waves, but together it’s a recipe for being able to find inner peace.
Dealing with a chronic illness is complicated, and there are many shades of grey. One does not move in a clear path when seeking their state of acceptance. It is a convoluted mess of feelings, with a lot of going back and forth, until one finds their own “happy-medium,” where they are most at peace with themselves. And this “happy-medium” may not always be the same either. It could change with age, experience, addition of new symptoms, alleviation of old ones, gains in perspective, changes in support structure, and a host of other factors! And even after finding, readjusting and fine-tuning this point of “happy-medium,” one may not always be at peace! But for many of us with chronic illnesses, it may simply be enough to be able to feel the calm most of the time!
Is the glass half full or half empty? In one’s mind, it may be either, depending on whether they bend towards a more optimistic or pessimistic view of the world. But in reality, it is both. Admitting this realist perspective offers an opportunity to cultivate acceptance, which can then lead to happiness!
There was a perfect storm of unpleasant events about a week ago. Allergy season brought on a sneeze-fest, which triggered intense spasms in my back, that then wound up my muscles up in a knot most sailors would be envious of. The back tension spread to the neck and head, eventually bringing on a bout of recurrent migraines, complete with the ice pick stabs, aura, and symptoms of trigeminal neuralgia. After waking up in the middle of one of the worst attacks of the series, I painted a dream image titled “No End in Sight.”
I will not lie, I intended it to be every bit as depressing as the title sounds. At the time, the pain felt relentless. By this time, I had been in a flare more days these past few months than I have been “normal.” I tried to encapsulate complicated feelings of hope and hopelessness, pain and exhaustion, the desire to keep trudging and the desire to just stop, all at once, in the painting below.
And yet, a friend, one far better versed in chronic pain than myself, planted an idea in my head that helped me see this image differently. She pointed out how his burden gets lighter with time!
That sprouted a thought in my mind: perhaps he is not giving up after all! Perhaps his perspective has just shifted, and he is simply accepting that he is stuck in the desert for the moment, that there is no use fighting it, so he might as well accept his current situation. As he tries to find peace within himself (note the hermit look by the end), even under the less-than-stellar circumstances, his “burden” is made lighter.
Though this might seem like a silly optimist’s game of what-do-you-see-in-the-picture, ultimately, perspective is all that matters. I felt it acutely on the 4th day of my recurrent migraines, when I felt momentarily delighted to wake up with my regular all-over fibro pains! This meant that my headache intensity had now lowered enough for me to feel pain elsewhere on the body! Of course, that delight was short-lived once the spasms started reasserting themselves, and another migraine attack followed shortly thereafter. But in that bizarre moment when I was happy about fibro pain, I learned an important lesson in how much our perspective on a situation determines our response to it, much more so than the situation itself.
I do not believe that one needs to be an optimist to find happiness in tough situations; one only needs to be a realist. If you are wondering if the glass is half empty or half full, I would argue that it is both! No situation is all good or all bad (despite chronic illnesses tending towards the latter). As an example, I recognized that because of the rest that my unwelcome migraine forced on me, I am in less pain overall (for most of the day) than I have been in months! Being able to see both the good and the bad of fibromyalgia and its associated maladies have helped me accept things for what they are. And with acceptance comes some measure of inner peace, which then translates to happiness.
I have written in the past about what acceptance means to me on a practical level, but not much about what acceptance, as a concept, might mean (or what it might not!). And though I have implied the role of “acceptance” in finding happiness with a chronic illness, it doesn’t much help those still in search of either. So I have decided to do a series of posts after this one, talking a little about what acceptance means from my perspective; how it can lead to happiness (or at least, less frustration); and finally, some of the ways by which I think I was able to achieve that state of mental stability. I hope that my insights can reach somebody still in search of these ideas, and that they may spark thoughts in their minds that lead to their own personal definition of acceptance and happiness!
After a recent particularly bad flare, I had to make a difficult decision to walk away from a field in which I realized I was not welcome at anymore. If I stayed, I would constantly be forced to push myself beyond what I was physically capable of, and would still not be able to meet expectations. So you would think the separation would be mutual and amicable; yet it is not.
In many ways, I feel like I am still very tied to my work identity (although it’s been a work in progress detangling myself from it). Being a “scientist” is one of the major ways I identify myself. Every other descriptor I could think of – artist, woman, chronic illness fighter, etc. – are all farther down the list. When I think of descriptors of myself, “relationship phrases” don’t show up very high either. Many people identify themselves strongly as a parent (father/mother) or child (son/daughter) or spouse (husband/wife), or in other such relationship terms. I have trouble with that. I have always been a painfully independent person, almost to the point of being a loner. And I suspect it is the associated loss of both personal and financial independence, that comes with being ill and out of work, that is at the core of why it has been so hard for me to face the fact that I just need to take a break to focus on my health for a while.
The loss of personal freedom has been something I have been constantly struggling with since developing fibromyalgia. While I can be great at offering and providing help, I absolutely suck at seeking and accepting it! It took me a while to even recognize that I had my partner in my court, and that its OK to lean on him and allow him to help me. It made a world of difference once I let myself be helped with my day to day tasks! And for once, I felt comfortable enough being helped that I never realized how hard it would be physically to live without that help!
Living in a small town, my chances of getting a job here were pretty minuscule, especially in science. For many years, I kind of saw this as a boon because I hated being trapped in one place for too long, and this place seemed to come with its own time limit. But now that it was time for me to move on and take a job in a different part of the country, I had to seriously consider how I would manage a demanding full-time job with other issues like uncertain transportation (potentially a lot of walking), cleaning, cooking, laundry, bathing/hair washing, and a myriad other day to day things that I often need help with. All of the little things that didn’t even merit a thought in my brain at one time are now all serious issues that have the potential to wipe me out and flatten me on my back for days.
I realized that for the first time, I actually need my husband to be with me, physically, and help me out! Not to mention, I would also need him financially, if I were jobless, and not just to provide general subsistence (a shared need), but also for my healthcare needs (a very personal one). And I have never needed anyone in that way before. As a person who prizes her independence, that realization – that I might really need someone now – was one of the toughest I have ever had to come face to face with.
My husband knows how hard that is for me. In fact, he has always known it. That is why he has never made big deal of helping me – he just did it quietly and unassumingly – and made a point of doing so without treating me like an invalid. I feel like very few people are lucky to have that kind of love in their lives. And that is why – perhaps what has been even tougher for me to face – is that even that kind of selfless love does not make up for the sense of loss that I feel due to my illness.
This realization has been really hard for me because it is almost like admitting his love is not enough, despite everything he does for me all the time. And it makes me feel guilty, because he has been the only constant force through many of the things that I have been battling for many years. Yet it is not as if I am not grateful to him and for him. But it is the gratitude that one might feel for nurses when interned at a hospital. It’s great to have that tender loving care, but they would much rather never be in the hospital in the first place!
Though, in some ways I wish I never had to face these harsh realizations, in other ways I am grateful for them. It has given me a chance to really think about why my work identity matters so much to me. Why am I so loathed to accept help? Why do I feel this insane need for independence? It has given me an opportunity to delve deeper into myself and work on long-standing issues that I may never have otherwise. So as a person who craves new and varied experiences, as unpleasant as this one is, I still see it as an adventure! I am still expecting good things to come out of this time of uncertain and difficult realizations. I may be a ship in a bottle for now, but that doesn’t stop me from still looking out towards the sea.
Recently I was speaking with someone about the root causes of fibromyalgia who used to suffer from the condition in the past and studied it as well. She confided in me that she felt like much of the pain and fatigue developed from not living in alignment with one’s true self.
I have to admit that the idea had crossed my mind before as well. Like some part of me might know that I am headed on a road that is ultimately not who I truly am, even though I may not be consciously aware of it. And it is kicking and screaming, trying to get my attention – through the FM symptoms – to get me off that track. It is forcing me to pause, and do some soul-searching to find what it is that I should be doing that is indeed in alignment with my authentic self.
Presumably, once one reconciles their actions with their true identity, the symptoms improve. That is what, I got the impression, she believes happened with her. She also cited life stories of several people she studied with FM – many with high-achiever, goal-oriented personalities and fast-paced lifestyles (stories similar to mine) – who switched career tracks as a result of FM and now are doing much better. Plus they are now much happier.
Of course, one might view the data completely “non-spiritually.” You get ill. You realize your current lifestyle is not conducive to your feeling better. So you make the difficult choice of changing it to something that bodes better with your current state of health. And lo and behold, minus the added stress and pushing past the limits, you start to feel better! This is, of course, the very premise of pacing! And who wouldn’t feel happier if they got off the FM roller-coaster?
While I have nothing against the sort-of spiritual way of thinking about the condition, I cannot but feel like it is a bit too close to the “it’s all in your head” dismissal that so many of us have heard so often. I know, though, that it is not how she meant it. She is well aware of the stigma attached with invisible illnesses. But I still bristle at the thought of how there is so much more open room for interpretation and/or conjecture with conditions like FM, which cannot be tracked to a particular cause (yet), than other illnesses with more definitive causes.
Regardless, I can certainly see the merits of her spiritual way of viewing the world. I imagine it goes a longer way towards promoting acceptance and and sustainable changes in lifestyle than a purely medical train of thought. You may feel less indignant, or like you’ve been dealt an unfair hand, if you think that it is your unconscious mind that is using FM to steer you towards the right path. This way, you might resist less in making the changes necessary for your well-being.
But once one is past that stage, I am afraid that there is a lot this worldview alone cannot fix. It is the same issue that I have with positive thinking. Positive thinking in the form of cognitive behavioral therapy can be beneficial in helping one come to terms with their condition and not make their pain worse due to catastrophizing. But beyond that, no amount of positive thinking can cure FM any more than they can cure a tumor. Likewise, I doubt authentic living could necessarily get rid of my flares due to period or bad weather.
However, none of this is to say that we should not try and make the best of the situation and do some soul-searching. Whether or not it can cure FM, chances are that a balanced, fulfilling life can only really be cultivated if it is in alignment with one’s authentic self.
Now more than ever, as I stand at a transition phase, I keep thinking of what kinds of paths would appeal to my true nature. Despite the subject being a recurring motif with me, I have been giving it a lot more thought after developing FM, since I was forced to turn off the auto-pilot and take the gears of life back into my own hands. I do believe that finding and living in accordance with my true self will bring a measure of happiness and inner peace that I often lack now. And if my fibromyalgia improves with it too – well, I’ll just consider that a bonus!