In Sickness and In Health

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

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

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

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

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

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

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

Love,

Fibronacci

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

 

Creative Blogger Award

A huge thank-you to Rene (the blogger behind Periwinkle Pursuits) for nominating me for the Creative Blogger Award! I am very new here so I feel honored that my blog was acknowledged with the nomination! Rene has a wonderful blog herself, where she shares her creative pursuits as she makes her way through a life with fibromyalgia and raises awareness for the same.

Here are the rules:

1. Thank the person who nominated you and include a link to their blog.
2. Share five facts about yourself.
3. Nominate at least 5 other bloggers and add their links.
   
4. Notify the bloggers you included.
5. Keep the rules in your post.

Five facts about me (that you probably didn’t know):

• A long time ago, when I was in middle/high school, my mom wanted me to take self-defense lessons. So I trained in Shorin-Ryu karate. I am a black belt (1st dan).

• Sometimes I have trouble making my left and right brain hemispheres talk to each other, even though they both work perfectly fine by themselves. As such, I don’t always understand the musical difference between punk rock and heavy metal, but I like one and not the other. I will also be able to hum a classical piece (so I obviously know it) but will not be able to remember the name of it.

• I have a love-hate relationship with my hair. It is long and thick, and I love the way it looks when it behaves. Trouble is, it’s a problem child and doesn’t always behave. Then I just look like Joey Ramone (which I don’t mind either).

• I may have had a past life as a fish. I absolutely love being in the water, and would like to train as a scuba diver one day. Between asthma and fibromyalgia, I am not sure if that will ever come true, but a girl can dream!

• When I am stressed out, the mess that I live in suddenly becomes very apparent, and I go on a cleaning spree. This is about the only way the apartment ever really gets cleaned.

My nominations/blogs I would love for others to check out:

1. Fruitful Dark
2. Isabella El-Hasan
3. All Things Chronic
4. VisualAtelier
5. Jill Millward Artwork
6. The Doodle Chronicles Blog
7. The Invisible F

Thanks once again to Rene for the kind nomination!!

Love,

Fibronacci

It’s Not Been All Bad

Dealing with a chronic illness can take up so much energy and command so much of our attention throughout the day that it is easy to get lost in the trees blocking our path. But every now and then, I like to be able to take a step back and look at the forest through the trees, the big picture of my life. . . and then, things don’t seem nearly as bad as they do on a day-to-day basis. So I thought it was high time that I started thinking of some of the better things that fibromyalgia has brought in my life.

Featured painting: Forest Through The Trees-II (16X20, oil on canvas)

Here are my top 5!

1. Ability to notice and be grateful for the tiniest little pleasures in my life.

This is the perhaps the biggest and most important gift that I have been given by a chronic pain condition. Here’s an example that illustrates my point:

A few days ago, I had taken enough tramadol before going to bed that I had little sensation of pain even upon waking. That feeling, of waking without pain, is such a distant memory that, at first, I thought I was dreaming and not really awake! And then it occurred to me that I had woken up most of my life like this – not in pain – and I had never noticed what a pleasure that was; I had taken it completely for granted. Well, not anymore! I can count on one hand the number of days in the last year that I have woken up with practically no pain or stiffness, and I am immensely grateful for each of them.

2. Reconnecting with my husband in a very special way.

I think this is right up there, sharing the #1 spot. For some time now, I have had a difficult time balancing my work with my life, and it took a strong turn of events for me to prioritize him again over all else. I had taken him so much for granted that I had forgotten how special he was to me. My struggle with fibromyalgia has served to bring us closer than we have ever been. He has been my pillar of strength and a rock for me to lean on (both figuratively and literally, I might add) in my roughest times. I cannot begin to express how grateful I am to have him in my life!

3. Realizing that work doesn’t have to be my life.

For the better part of the last half-decade, I have been a bit of a workaholic. A large part of that was because I actually enjoyed my work (and still do), but because I spent so much time working, I was starting to invest too many of my identity-eggs in that one basket. Fibromyalgia forced me to take time off from work and made me realize that I am more than just a biologist; I am more than just my work. My identity as a scientist and a teacher is just one aspect of me, but I have many other interests as well. I also learned to be more flexible with both my commitment to my work, as well as my career choices in the future, knowing that however things turn out, I will still have other identity-eggs in other baskets.

4. Reconnecting with the “other side” of me.

Another consequence of spending a long time working in a left-brain oriented manner was that I was feeling “lefted-out,” i.e. feeling locked in the left side of my brain, incapable of connecting with the more spontaneous, free-flowing, right side of my brain. Pure reasoning is an exercise in frustration when it comes to making sense of chronic pain, especially at a young age. That kind of approach is not conducive to being able to accept the current condition and “roll with it.” As I engaged more in art and meditation, I felt more capable of connecting with the right side of my brain. In doing so, I have been able to feel more whole as a person, and was able to embrace a lot more than what the solely analytical part of my mind could handle.

5. Learning to prioritize and delegate.

Compared to the top 4, this one might seem a small one. In truth, however, “prioritizing and delegating” is just the top of the iceberg. There is much more to it underneath, as depicted in the image to the right, in order for that approach to work. In short, fibromyalgia has taught me more lessons in mentoring than any workshop I have ever attended!

I guess this just goes to show that every cloud does have a silver lining, though sometimes I may have to look for it a little harder. Once I find it though, it brings me much hope and happiness, and often when I need it the most!

Love,

Fibronacci

Saving Face with a Chronic Illness

Graduate School is full of overachieving people who care a lot about one thing – their research. That, and their perceived image with regards to their ability to face difficulties.

Crying or any expression of disability or needing accommodations to overcome disabilities (aka not always being 100% self-sufficient) is considered “weak” and people who engage in such are often considered as “not being suited for graduate school.” Therefore we are mainly a clan of somewhat anti-social stoics, who bottle up everything, and then get dead drunk to release it. There is some bizarre irony here that a bunch of scientists (biologists, no less) think binge drinking is a better alternative to crying if you want to let it all out!

As much as I recognize the idiotic nature of the culture, I have to admit that, for the most part, I am one of the stoics. I don’t binge drink to release tension, but I am certainly not particularly good at showing emotions either.

I have many faces, figuratively speaking, and I am very careful about what I show to whom. Part of it, I believe, is a trust issue – I have been burned before and I am careful to not get burned again. I find people (including therapists) are often incapable of understanding the complexity of emotion one might feel, and have the tendency to box you into one group or another, without recognizing that no box might truly fit you. I have found this experience frustrating to say the least, and not one I care to keep repeating. To add to this general tendency of the human population, the graduate school environment certainly seems to select for those who are so wrapped up in one thing – their science – that they are incapable of complex human bonding.

This combination of factors made it very difficult for me when I developed fibromyalgia as a Ph.D. student. I found myself fairly isolated and unable to really explain my condition to many people, including my boss, without feeling apologetic for developing a chronic illness. I am the first to admit that it is stupid to feel that way, but I suddenly felt the need to save face by making sure I am extra efficient with my time and trying not to outwardly show what the pain and exhaustion was doing to me.

The latter largely failed after a time when my mobility started declining. So then I turned to humor but still only told the closest people – my boss and immediate colleagues. They have been generally very nice about it, but I still refrain from truly sharing the impact the disease really has on me. Recently, I even talked about it in medical terms with one of my committee members, who was fairly nice and curious to learn more about the disease – I was proud of this because I wouldn’t have been able to have this discussion a year ago, but I didn’t have a choice now as we had to climb stairs and I was slower than this man some thirty years my senior. Yet, we talked about fibromyalgia as one might talk about a badly infected tooth that needs a root canal job.

Nobody can truly understand what it is like to live with a chronic pain condition unless they either have it themselves or know somebody very close who does (a spouse/partner, for instance).

So I continue to be unable to talk about the havoc that fibromyalgia has wrecked in my life, in person, with anybody other than my husband. I don’t expect this to change anytime soon. Yet I know that there are others like me, in grad school even, who are fighting their own chronic battles and they must all feel like me too. It is doing a disservice to them all if I just stay quiet and keep walking like a character in Metropolis. So I met myself halfway and started this blog. I have only shared it with a select few, but this is the start of me sharing my inner universe with the world outside.

Sometimes I wonder if starting this semi-anonymous blog is just another way to save face, to make up for an imaginary mistake that I did not choose to make. But then I think perhaps this is my way of accepting one of my many faces – the face that’s always in the shadow, the one that cannot be easily named, the one that shines only in the dark.

Featured image: Ruby Tuesday (11X14, oil on canvas)

Love,

Fibronacci

Another Pain Scale

I had discussed before how difficult it is often for me to give my pain a score. So my physical therapist enlightened me with a relatively simple pain scale that is easy to follow.

Since then, I have found another on a pain diary app (that looks great but unfortunately doesn’t work), made by Andrew Brooks for Windows Phone, last updated in 2011. Since the app is free to download, I didn’t see an issue with sharing the attached pain scale here, which is more extensive than the one I described before.

0 = no pain

1 = pain is very mild, barely noticeable; most of the time you don’t think about it

Definitely a good day when I can say I am at an “1” with this scale. Parts of my body may be at “0” but most of it almost never is anymore.

2 = minor pain; annoying and may have occasional stronger twinges

3 = pain is noticeable and distracting, however you can get used to it and adapt

The “2-3” range is probably my new normal on my current medication regime, according to this scale, which is more or less consistent with the last one.

4 = moderate pain; if you are deeply involved in an activity, it can be ignored for a period of time but it is still distracting

5 = moderately strong pain; it can’t be ignored for more than a few minutes, but with effort you can still manage to work or participate in some social activities

Sort of a sub-normal for me when I am at “4-5” on this scale, but not quite flare-level.

6 = moderately strong pain that interferes with normal daily activities; difficulty concentrating

7 = severe pain that dominates your senses and significantly limits your ability to perform normal daily activities or maintain social relationships; interferes with sleep

The trigger points in my midsection have been acting up recently, starting to throb ridiculously and shooting nasty pains in all directions. I would say that experience falls under a “6-7” on this scale. I would call this flare-level pain. The cumulative effect of the flare tends to rise the longer it lasts.

8 = intense pain; physical activity is severely limited, conversing requires great effort

I think I only hit “level 8” periodically and in waves, like when the throbbing pain wave has me in its grip. I am lucky to have not experienced this level of pain constantly for extended periods of time – largely thanks to emergency pain medication!

9 = excruciating pain; unable to converse, crying out and/or moaning uncontrollably

10 = unspeakable pain; bedridden and possibly delirious, very few people will ever experience this type of pain.

The last two levels sound like the pain you would feel if you were shot in the trenches or had to have surgery without anesthesia. Thankfully, I have experienced neither. I have been at a point when I am crying or moaning out of pain, but I feel like I could have pulled myself together to save face if I really needed to. And I have never been delirious with pain, thank goodness. Apparently, even the developer of the pain scales seems to acknowledge that few people will ever reach “level 10.”

While I kind of like that this pain scale is more extensive and covers more ground than the last one I posted, I also feel that it is almost too extensive. On a daily basis, I doubt I would remember what each level means as easily as I would with the other, simpler scale. Still, I thought I would put it out there to keep a record of it in case I ever need it in the future, or if it can help someone else!

Love,

Fibronacci

Humor for Pain Management

On a recent vacation with my friend’s daughters (11 and 13), we played a joke on the server at a diner by dropping all our spoons in our glasses. No, we were not making lemonade; and yes, we do have a lame sense of humor. It was borne out of pure goofiness – a brainchild of my dear husband, whose mental age matched those of our young friends.

Not many people would get the humor who did not experience the moment, hence I call the still life painting in the featured image: The In-Joke (6X6, oil on canvas).

Up until that point, my friend’s daughters just thought that my husband and I were just weird – especially my husband with his rather bizarre sense of humor. (I am not much better.) But in that moment of goofy humor, my friend’s younger daughter connected with my husband. I saw her eyes light up as she joined in the fun, and now she’s made a tradition of it and sends us pictures of spoons in glasses at various restaurants.

What I find equally funny is how my memory of this incident is tinted in rose when it had every reason to prick me like thorns. This particular incident happened after a long day of outing and long car rides, when my pain was on the upswing and I was functioning on tramadol. Overall, I was not in the best of physical states, yet what I remember most vividly was how much fun we had with that silly little joke – not the pain or the discomfort, although both of those were equally strong.

Perhaps it’s true what they say: Laughter is the best medicine.

To lend some scientific credibility to the old wives’ saying, there was a study published in 2012 by a group of British, Dutch and American scientists that showed that the perception of pain in reduced by laughter. They suggest that laughter induces the release of endorphins, the body’s natural pain-relieving “happiness” molecules, that help people tolerate pain better.

“The results show that pain thresholds are significantly higher after laughter than in the control condition. This pain-tolerance effect is due to laughter itself and not simply due to a change in positive affect. We suggest that laughter, through an endorphin-mediated opiate effect, may play a crucial role in social bonding.”

Dunbar et al. (2012) Social laughter is correlated with an elevated pain threshold. Proc Biol Sci. 279: 1161–1167.

But I find humor to sometimes be a double-edged sword. When the trigger points in my upper back and chest are throbbing, laughing can feel like daggers stabs. Yet, my husband and I certainly turn to humor a lot, especially in times of pain. It is often sardonic, sometimes sarcastic or cynical, but dark humor is what keeps me afloat when I have no more strength to swim. I prefer to think of my life as a black comedy instead of a tragedy. At any rate, humor keeps my mind off the pain at least for a little while and gives me a reason to smile.

Laughter may not be the best pain medicine, but it’s certainly better having it than not!

Love,

Fibronacci

 

 

Reality Bites

I have done my best to take things easy lately. I used to stress about squeezing in extra work to make up for the time I am missing while at aquatic therapy, but I relaxed on that since I found the therapy itself was eating a lot out of my energy pie, and I was asking for trouble by pushing myself any harder. So I continued to take my weekends off.

In all fairness, this routine has helped me attain a level of normalcy that I am happy with; but it does leave me with very little time to actually do any work! A lot of the experiments I run requires a certain chunk of time devoted to it, and I cannot always abandon them in the middle of it. So really, I only have three 6-8 hour days to do all my work in. As a result, I feel the pressure to make the most of those three days and be as efficient and “perfect” as possible in what I do.

And there’s the problem!

Featured Image: Darkness with a Hint of Light (18X24, oil on canvas) – sort of fits with the theme of the post and my current mood.

Last week, my symptoms flared in two of those three days, right after I had started to work on something. After months of not being able to do much, since teaching during the semester eats out massive chunks of my time and energy, I did not want to slow my already slow ass down any further. So I tried my best to push the pain out of my mind and continue working. This did not work so hot, so I tried to rush my work so I could go home and die lay down.

That was NOT a good idea.

In my rush and inability to think or focus beyond the pain, I had messed up. Granted, it wasn’t a massive mess-up but it made me look stupid, like I didn’t know what I was doing, and my boss made a big (enough) deal about it. Any other day, I would have brushed it off. But that day, I could not. I was both angry and upset, first at others for making it a bigger deal than it needed to have been, and then at myself for not knowing any better. I mean, what was I thinking??? I should have just waited until after the flare, and sucked it up about being slow, but I had to rush! And I had to mess up!

It seems unfair because nobody sees how hard I try – when I swallow my pain to get something done, I do that in private – but when I fall face-down, it’s always in public and everybody sees. It’s not that I want other people to acknowledge my struggles necessarily, I would just like fate to cut me some slack! Especially because I don’t work as much as I used to, I try really hard to do right whatever I do get done. But now I had messed up in really stupid ways and felt like a complete loser. Given how much pain I had withstood only to fail, I considered giving it all up in that instance, doubting the worth of anything at all that I do. I was ready to dig myself a grave (obviously figuratively, since I didn’t have the strength to do it literally), crawl into it and stay there forever. It hurt because I expected the universe to co-operate for once, when I really was trying so hard, but of course that wasn’t to be. And I should have expected that. But I didn’t. And I was mad about that too.

I did learn a few lessons out of this miserable week though: (1) I will never make the mistake that I did which started the downward spiral in my mood. (2) I will make doubly-sure to not rush myself, especially when I cannot focus in the midst of a flare. (3) I realized that I am obviously not at nearly as much peace with my current condition as I thought I was. I don’t seem to have quite accepted it enough, as yet, that I am not the person I used to be and that I will never be able to do what I once used to do.

At least that last point gives me something to actively work on! And there’s a reason to crawl out of my figurative grave I guess. At a time like this, I need to keep reminding myself of all the good things that fibromyalgia has brought to my life. Maybe this will propel into getting off my butt and write it already!!

Love,

Fibronacci

 

A poem for the last week of the semester…

With the end of the semester upon us, the deadlines for grade submissions are looming and stress levels are soaring. Since stress is one of the biggest triggers that makes my fibromyalgia symptoms flare, I am savoring every one of my few good hours these days. At a time like this, then, when I saw this wonderful poem by The Professor, it sure got a healthy laugh out of me! Humor is one of the best stress-busters ever, and the Professor has got that down pat!