Monster in the Mirror

In my early Fibro-days, before I was diagnosed, before I started physical therapy, and when I was being ravaged by Rachel (myFibromyalgia’s name) with unbearable pain most of the time, I had to begin grieving the person I had once been.  I don’t think I knew it at the time, because without a diagnosis, my prognosis was opaque at best.  However, I do think I began the grieving process, particularly when I would see my reflection in the window of my mother’s car.  I probably noticed my reflection in mirrors as well, but the car window reflection struck me more saliently.

The reflection simply didn’t belong to me.  I didn’t recognize the slumped over beastly monster.  My reflection couldn’t hold herself up straight, I would later learn, because her core muscles were wasting away, being eaten by Rachel, that fat fiend   My reflection dressed sloppily, because clothes hurt so very much.  Her hair was a mess, because her arms didn’t work well.  Her face wasn’t mine.  It hadn’t’ changed, I don’t think, but somehow, it wasn’t mine.  Perhaps the pain had found its way to my soul, and perhaps a pained soul reflects in one’s face.  If you believe in souls, that is.

After my diagnosis and after I began physical therapy, I began to improve.  Not long after that, the monster in my reflection was chased away by my real reflection.  I slowly returned.  Clothes still hurt, but not as much, and I was learning how to dress somewhat better without adding pain.  My arms worked again, so my hair could look nice again (my mom helped with my hair and clothes when I couldn’t, but it’s just not the same when someone else does these things for me).  My core muscles were returning, so I could stand straight again.  Most importantly, my face was back.

Whenever I see my reflection in a car window or a more traditional mirror, I am grateful that I see myself, rather than my fibro-monster.  Perhaps the fibro-monster is what Rachel looks like.

Seeing the reflection of the distorted version of myself forced me to come face to face with Rachel, that is, with my Fibromyalgia.  I would have to grieve and let go of the person I had prefibroly (get it? Pre-Fibro + previously) been and accept the person I would have to become.  At my gradually strengthening core, I am still the same person that I have always been, as is reflected in the return of my real reflection, but much of my life and perhaps portions of my personality had to change so that I could more effectively cope with chronic pain.

A Song for Rachel

As I’ve explained previously, Rachel is what I have named my Fibromyalgia, and in a moment of anger towards Rachel for how she has negatively changed my life and robbed me of so much, I decided to listen to Christina Peri’s song, “Jar of Hearts” to help release some of that anger.  It’s a great song that very nicely expresses anger in such a way that any kind of painful anger can be soothed by the song’s emotive expression.  As I cathartically listened, it occurred to me that the song could very easily address Rachel, rather than the heart braking presumably ex-boyfriend of Christina Peri it is actually directed at.

The lyric, “I’ve learned to live half a life and now you want me one more time” is what specifically motivated this connection for me.  I really have had to lead half a life, and every time I have a flare-up, every time I have another pain, every time someone inadvertently reminds me of something I have lost or of the burden I have become, I feel like Rachel is coming for me one more time, again and again and again.

Obviously not every lyric relates to Rachel, since Fibromyalgia was clearly not the motivation behind the song, but so much of it does fibro-hit home so perfectly, and I think it makes for a good “Eff you, Fibro” anthem, particularly when it’s fibro-condensed as follows:

“I have grown too strong to ever fall back in your arms.
I’ve learned to live half a life and now you want me one more time…
 It took so long just to feel all right.
Remember how to put back the light in my eyes…
You don’t get to get me back…
 Who do you think you are running ‘round leaving scars…
You’re gonna catch a cold from the ice inside your soul,
so don’t come back for me, don’t come back at all.
Who do you think you are?”

I spend most of my life now making an effort to not think about the gory details of the state of my crippled being.  This is no easy feat, since I also have to spend most of my life being aware of avoiding pain, and planning things out, like taking pre-emptive Advil before attempting to go to a family function, avoiding places that have stairs without elevators, or stretching before attempting to do just about anything at all, such as starting my day.

I have to focus on things that normals do with so much ease that they do the things without ever thinking about it, like focusing on how I’m walking or how I’m stepping onto a curb or a small step (since, at the time of this posting, I can’t even attempt a normal sized step without holding onto someone).  I have to consciously work toward increasing function, and when I do increase in function, it inevitably means that I will have to endure more pain, sometimes temporarily, sometimes not.  Despite this, even the tiniest improvement in function is an enormous triumph for which I am endlessly grateful.  Things so easy for normals, like putting on one’s own pants one leg at a time, become the biggest triumph in several years – possibly the biggest triumph in my fibro-life so far.  While this triumph comes equipped with increased pain every day, the joyous triumph outweighs the increased ongoing pain.

I thusly try to focus on the positive things in my life, the improvements, and the hope for more improvements.  But then people innocently and/or well meaningly say things that normally don’t bother me but sometimes do, like when there’s a certain tone in their voice, or there’s a certain context, or (most likely) when I’m in a certain mood.  They say things about their own life (“I don’t’ have time like you do, I have a job”), and they say things about me (“You don’t have to live with your parents” “Yeah, I do, I can’t care for myself…”  “So hire someone”).   They say tings that make me feel like they don’t understand what I go through every day, even though these are the people who are supposed to understand.  They say things that force me to think negatively -- about how crippled and broken I am, what an enormous burden I am to my family and the world, and ergo how crappy my life is.  These thoughts then have the power to push me into the black hole of self-piteous despair.  I have to climb out quickly each time so that I don’t fall too deeply because if I fall too deeply down the big hole of depression, I don’t ‘know if I could get out….What am I saying – of course I could get out, but it would be hard.  I just have to use a few extra spoons to either deal with the negative thoughts or positivize them as needed.

I’m glad Glee had that episode (“Original Song”) where Rachel (the fictional character, not my fibromyalgia) used her emotional pain to write an amazing song (“Get it Right”), for that episode crystallized what I already knew and demonstrated here.  My emotional pain here has turned into this blog posting (okay, so it’s not amazing and was written in two bursts separated by months followed by a non-emotional proofreading).  The writing has helped me to get over and hopefully past the anger and emotional pain, at least temporarily, such that I can now move on to more joyful music, like Lady Gaga’s awesome Born This Way (the whole album, not just the song).  Of course, Gaga is a(nother) artist who probably understands the plight of the chronically pained, since her mother has Lupus, as she mentioned in an interview I saw on the TV some time ago (I think it was on Larry King Live).  I love Gaga, but alas, this blog posting has fallen off topic and so it will end now (you might think the proof reading I spoke of would have fixed this, but such was not meant to be).

A Poem, By Rachel (Fibro-Girl’s Fibromyalgia)

My evil heart brims with hatred.

Upon Fibro-Girl and all who surround her, I tread

Heavily with my fat, smelly feet

Such that I shall never be beat

I pummel Fibro-Girl with glee

And Fibro-Girl hollers, “Leave me be!”

But all can certainly hear my laughter

Or so I assume, for you see

You should know I’m insane, before as well as hereafter.

I am not a poet

Nor is Fibro-Girl, ya know it!

Neither she nor I

Has taken a poetry course

And that is probably why

This poem lacks poetic force.

I’m not sure that “force” made sense in the above stanza

But I used it anyway, because it rhymed with “course,” bonanza.

There I did it again.

I think this poem fizzled when

I got all meta-poetic

So I think it’s now time for this poem to end, and thus it won’t be very epic.

Important Message from Fibro-Girl:

Please don’t like Rachel (my fibromyalgia).  Please remember that she is evil, and not the good, fun, oppressed, deserving-of-pity, or misunderstood kind of evil, but the psychopathically evil kind of evil.  If there is anything positive about Rachel, it was really me, Fibro-Girl.  Naming my fibromyalgia carries the risk of making her/it likable, so please be careful and don’t do that.  Thanks! :-)

Love,

~Fibro-Girl

Anxiously Obvious Epiphany

A few months ago, I suddenly had a revelation that, with some later thought and a follow-up epiphany that I had today, would explain nearly every confused experience I ever had where I felt like I couldn’t understand things that others seemed not to have a problem with.  This revelation was something that is probably obvious to most people, perhaps even to me, but that day, it clicked in a way that it never had before for me.

I realized that having anxiety makes understanding and perceiving things difficult.  I think having fibromyalgia might have contributed to this revelation.

This epiphany exploded into existence in my brain one evening as I blissfully read an interesting book on my Kindle (Moonwalking with Einstein if you’re curious, which, ironically, is about memory).  Something happened that caused me some anxiety, and while it was happening, I suddenly found myself not understanding what I was reading.  This was a strange, deja-vu ridden sensation – strange because prior to that, I had no trouble understanding what I was reading at all and I didn’t have to re-read anything even once, and deja-vu ridden because I had experienced this a million times before throughout my life, where I would feel like I was reading another language and I had to re-read every line a few times and I would still feel like I didn’t understand.  Despite having had this experience I gozillion times, I do not believe that I have an attention or learning disorder, because there was no apparent consistency to the lack of understanding.  More often than not, I did understand, and that is probably why I usually did well in school.

Realizing that the anxiety was causing the lack of understanding in that moment with my Kindle allowed me to realize that averted and/or divided attention was to blame for every instance in my life of not understanding something I should have understood.  Everyone knows (or I assume they do) that when attention is divided via multitasking of any sort, absorption of content is adversely affected  That time, my attention was divided between my book and the object of my anxiety.  I imagine this anxiety-driven attention division probably accounts for a large portion of my confused experiences, since I’ve tended to have (undiagnosed) anxiety for years, perhaps all my life.

I think the remainder of my confused experiences could be attributed to being legally blind.  I realized today in a follow-up epiphany that the brain power I have to use to struggle to strain to read small print (I can read most things with my magically powerful reading glasses, but small print still results in straining of my eyeballs), or struggling to see what’s happening on a TV or movie screen apparently forces my attention away from the actual content that I am reading or watching and hearing.

The latter epiphany came to me as I half-watched and half-listened to Willy Wonka and the Chocolate Factory on the TV in the background while I did some fibro-stretching.  I had seen this at least once in school or camp when I was a young-un, but so much of what I was half-hearing seemed entirely new to me (I also read the book as a young-un).  Obviously much of this resulted from natural memory evaporation, but there was more to it than that.  I remember watching it in the classroom, sitting on the floor, and struggling to understand what was happening.  I could barely see what was on the TV, but I have never had a problem with hearing (knock on wood).  I suddenly wondered today why I didn’t get more out of just hearing; you can get a lot out of a TV show or movie just from hearing it.

Thus, it occurred to me that I struggled so much to understand because my attention was divided between the auditory content and my struggle to see.  This, combined with my previous epiphany regarding divided attention allowed me to realize that all those times I struggled to understand what I was reading even in the absence of anxiety, my straining eyes were likely to blame.  The strain itself – having to focus so much attention on simply seeing – drove my cognitive forces away from the content of what I was reading.  Furthermore, all that strain was exhausting, resulting in attention being diverted to the sleepiness.  I wonder if some of the exhaustion came from the fibromyalgia that loomed in my future.

Speaking of fibromyalgia, I mentioned above that having fibromyalgia might have contributed to my epiphany.  After receiving my fibro-diagnosis, I learned that stress can play a big role in fibro-owies.  Subsequently, one of my new life goals became reducing stress, which probably allowed me to experience a more drastic shift from not-stress and stress, which is what led to my initial revelation, since anxiety obviously creates stress.  Perhaps this is just a means by which to make this relevant to fibromyalgia, so that its presence in this fibro-blog will make sense.

Did Fibromyalgia Save Me?

The following was written in February or March of 2010.  I neglected to revise and post it until now, after reading this Esquire article and Roger Ebert’s response to it.

**DISCLAIMER: The following are just my opinions and/or my experiences.  Do not use anything in this blog to justify avoiding medical treatment or to justify anything else.  Talk to your healthcare provider and see my other disclaimers on the right.**

I was shocked to see what happened to Roger Ebert.  I didn’t see the Oprah episode first – I saw this article about it.  I had no idea that Roger Ebert had thyroid, then salivary gland, and then jaw cancer, that the surgery to remove part of his cancer-ridden jaw and the radiation caused his carotid artery to burst, or that he was left without a jaw and without a voice after his doctors saved him from bleeding to death.  I didn’t know that other parts of his body suffered as doctors tried unsuccessfully to reconstruct his jaw.  My heart broke as I watched this clip.  I actually didn’t realize he hasn’t been on TV in four years.  Four years ago…I guess that would be 2006; my fibromyalgia started in 2007, so maybe this was all coming out when I was in too much pain to know anything, or maybe it was kept quite, or maybe I was living in a cave at the time.  Anyway, as sad and heart breaking as it is to see what’s happened to him, it’s also heartwarming to see that he remains optimistic and enjoys his happy life, and that, thanks to CereProc, Roger Ebert can have his own voice back.  It’s wonderful to see that he has survived, and continues to have his voice heard.

A few months before my Fibromyalgia started, one of my doctors felt a bump on my thyroid.  The non-invasive tests couldn’t determine for sure whether the bump was benign or not, so, exactly two days before my Fibromyalgia started, I went to see the surgeon about the removal of Bobby.  That is my thyroid tumor’s name; it is to be spoken with a British accent.

Normally, I’m terrified of any kind of surgery; I’m really uncomfortable with the idea of being sliced open in any way.  Because of that fear, other than my wisdom tooth removal, I have avoided every other surgery any of my doctors have ever suggested or strongly encouraged (I think there were only two).  The Bobby-removal was different; my doctor told me I had to remove it because even if it’s benign, it could grow and because of its location, that would not be good, I assume because it could block things that I enjoy, such as eating and breathing.  I was fully convinced that this surgery wasn't one that I could avoid when the surgeon mentioned that there was a 30% chance that it was cancer.  Also helpful in convincing me was the fact that this particular surgeon was willing to do the surgery with a local anesthetic, which eliminated my fears of general anesthesia.

After my Fibromyalgia symptoms began, it became clear that my body couldn’t possibly handle surgery, so my doctor told me we could wait, so we did.  When I went to my next checkup a few months later, that doctor found that Bobby had miraculously shrunken a little.  They didn’t believe my tumor could shrink.  But it did.  So the surgery was no longer urgent -- the cancer risk was either gone or almost gone (I can’t remember which) since it had shrunken.  A few months after that, it shrunk s’more.  It has remained the same shrunken size since then (knock on wood), but that’s ok, it shrunk enough to let us all know there’s no need to remove it now (if it grows enough to cause problems, I assume that would change).

When Bobby shrunk, I realized that my Fibromyalgia, as horrible as it is, had saved me from surgery that I fear so very much.  I wondered if my body decided to do something drastic since my brain had become willing to have it sliced open; it was as if my body had to buy some time.

After seeing what happened to Roger Ebert, with his surgery going awry, I feel even more strongly that Fibromyalgia had not only saved me from surgery that I fear so intensely, but it might have also saved me from a lifetime of a different kind of disability.  As I mentioned in a previous blog posting, I’m also legally blind (from birth), so either way, another disability would have piled on struggles, and I imagine that Fibromyalgia might be a lesser evil than what could have arose.  Of course, if I’d had the surgery and something went wrong, I still could have gotten the Fibromyalgia on top of that.

I’m grateful to G-d, to my body that has often saved itself, and to the Universe, that I didn’t have surgery that could have potentially caused so many other problems.  The surgeon who would have performed the Bobby removal is probably a great surgeon, but I can only imagine that a celebrity like Roger Ebert probably had a great surgeon as well; there are always risks with surgery.  I’m really grateful, even to Rachel (my fibromyalgia’s name), that I didn’t have surgery at that time.

Beyond the obvious irony of one horrible debilitating syndrome saving me from other terrible things that could have been, there is further irony in Rachel saving me from Bobby-removal.  I’ve read that it is thought that Fibromyalgia can be triggered by a physically or emotionally traumatic event, and I believe the impending removal of Bobby and part of my thyroid gland might have been the emotional trauma that might have summoned Rachel.  As I mentioned, it was exactly two days before the onset of my Fibromyalgia symptoms that I saw the surgeon and became fully convinced that I should have the surgery, and became aware of the 30% chance that Bobby was malignant.  I should have been freaking out – I should have been an emotional wreck.  But I wasn’t – I couldn’t even cry (despite my attempts).  It was too much to handle, so I detached, I didn’t feel anything, at least not as strongly as I should have, and normally would have.  My Fibromyalgia symptoms began with what appeared to be a terrible (unknown) viral infection (based on how my body reacted), and that was very possibly the physical trauma that helped trigger my Fibromyalgia (I’ve read that Fibromyalgia can start with a big infection).  However, I believe that the unfelt emotional trauma of a (second in two years) cancer scare and intense fears of impending surgery might have also contributed to the onset of my Fibromyalgia – the very Fibromyalgia that saved me from the surgery that I so feared and bought time for my body to confirm that my tumor is benign.  Knock on wood.

Oh Em Fibro-Glee

SPOILER ALERT – Glee Season 2 “The Sue Sylvester Shuffle” is described briefly below.

I got so ridiculously excited when Sue Sylvester mentioned Fibromyalgia on the post-Super Bowl episode of Glee.  While attempting to convince the sharp-as-a-marble Brittany to sign a release to consent to being shot out of a canon, Sue explained, “that cannon has two little baby twin cannons at home, and one more on the way, and if you refuse to sign this, well, those little baby cannons might just go hungry…And the Mama Cannon has fibromyalgia, so she can’t work.”  Needless to say, I was filled with gleeful joy as laughter erupted from within me; Fibromyalgia made it to primetime (again – it was mentioned on House once, where it was also recognized as a real disease).

Not only does Fibro-Glee provide another notch in the legitimacy and acceptance that only pop culture can provide, but Sue’s statement also justifies the necessity of disability status for Fibro sufferers.  I’ve read on the internets that if one has Fibromyalgia and wishes to be considered disabled by the government, one would be better off having another, more recognized and more clearly diagnosable disability.  For that reason, I realized that I’m lucky to be legally blind.  I’ve been finding that the government, doctors, and people in general are more accepting of Fibro these days, compared to what I’ve read about from just a few years ago, which is fantastic.  However, I think the transition is still incomplete.

I know at least one person who doesn’t seem to understand why I don’t work.  I always get the sense that this person feels that I’m wasting my life, and perhaps being lazy.  In his defense, I don’t think I ever really explained to him what I’m about to explain here.  To his credit, he is otherwise very much understanding of my condition, and, other than this, has always been incredibly supportive and helpful with all that I’ve gone through.  I think I appear more like a normal (yes, I said “a normal” lol) than I really am, as I think most Fibromyalgia sufferers do, and so, even this person who knows what horrors I went through doesn’t realize that while I’m 80 billion times better now than I was before physical therapy, I’m still very much limited and very far from being a normal.

Because of this one person who comes to mind and the other people who I’m sure also exist who feel this way, I often feel that they must be right – that I’m wasting my life and just being lazy with this not working business.  To avoid the inevitable depression that follows these thoughts, I have to remind myself of my limitations (which can itself be depressing as well).  I should mention, there are also a lot of people in my life who have only encouraged my laziness –  oopsies – I mean who have been extraordinarily understanding of my not working.  Despite my poor attempt at humor, I am very much grateful to those people.  Strangely, I also appreciate and understand the ones who think I should be working since I know they mean well and I know they aren’t thinking of the limitations that no one should ever have to think about.

The fact is, to my knowledge, there aren’t many jobs where it’s acceptable to suddenly need to take off work for anywhere between a day and two months because of a flare-up that you can’t always prevent or predict.  Even if there were such a job, there are so many fibro-limitations.  I don’t know how other people’s Fibro is, so I will only speak for myself.  I can’t sit, stand, walk, or lie down for too long.  I realize the latter is irrelevant for most jobs, unless one is considering the oldest profession, in which case Fibromyalgia is likely the least of one’s problems.  I can’t be on the phone for too long because either 1) with a handset, my hand, arm, shoulder…hips, toes, etc could end up hurting (okay, maybe not toes, but really, anything goes with Fibro) or 2) with a hands free device that attaches in any way to my ear or the rest of my head because my head, ear, jaw, etc will end up hurting a lot more than my hand etc would with a handset, or 3) speaker phone because that’s just inappropriate in a business setting, and quite frankly irritating for all parties.

Aside from all the little technicalities that most people never have to think about, there is also the stress.  Stress can very easily cause pain, and since one of my two biggest goals in life has become avoiding pain, that logically means avoiding stress.  The funny thing is, I occasionally forget that stress causes pain, and I wonder if that’s really all that true.  Inevitably, something stresses me, and inevitably, I’m reminded that yeah, it really does cause pain.  Obviously, the point of all this is, there aren’t too many stress-free jobs out there.

I want to mention that I know there are Fibromyalgia sufferers who do work, and I admire those people more than words can express.  I wonder if there are any legally blind Fibro sufferers who work.  I should also mention that I know of at least one person who retired early after trying to continue to work after a Fibromyalgia diagnosis and experienced tremendous improvements after doing so.  I know that people have to work, whether it hurts or not, and I am truly grateful that at this time, I don’t have to.

Even as I write this, I feel like I’m making excuses and I really am just lazy and don’t wanna work, and I just wanna bang on the drum all day (What?  I don’t play the drums, why would I sing that?  Don’t be scared, dear Blog Reader, I wasn't really singing that.  At least not out loud, but maybe in my head).  I’m finding it hard to write “But I need to realize and accept that I’m not just being lazy and making excuses.  I have two disabilities, and the one that some people don’t think is real is so much more disabling than the 'real' one ever was.”  But there, I wrote it, though in quotes, so it’s not real.

Fibromyalgia changed my perspective on everything – it changed my goals and it changed what I view as success.  The two most important goals in my life now are to avoid pain and to avoid alienating friends and family (the latter can unfortunately happen when pain is involved, as can be seen on House MD).  Thanks to physical therapy and some other things I do (such as walking, taking fish oil, and going to my chiropractor), I have succeeded and continue to succeed in not being in truly unbearable pain (knock on wood!).  Because of this, my continued limitations and continued (relatively) bearable pain are not failures; they are my life now, and I’m okay with that, as long as the real, immobilizing, and previously unimaginable pain stays away.

UPDATE: June 22, 2012

I just found this nice thing containing advice on working from home with Fibromyalgia.  If a Fibromyalgia sufferer is able to find a way to do this in a fulfilling and not-too-painful way, I think it is wonderful and admirable.  Interestingly, the author mentions blogging as a method of working, so, technically then, I do work from home via this and my other blog.  Of course, I can’t tell you where the other blog is because the blog that you’re looking at right now is written by my secret identity (Fibro-Girl) and the other blog is written by my real identity, and I am in the fibro-closet.  Anyway, despite these two fibro-jobs that I apparently have, the advertising that runs on my blogs hasn’t yet made me a gozillionaire.  But woohoo, I do (sort of) work!  (Emphasis on “sort of”).

Pain Scales can be Fun!

There’s a hilarious blog, called Hyperbole and a Half, which contains a vastly improved version of the pain scale. While it’s clear that this improved pain scale has universal applicability, it really suits fibromyalgia well, far better than the traditional one.

In addition to the usefulness of the new pain scale itself, the hilarity of the blog also has great utility for fibromyalgia and other pain sufferers. When the pain isn’t severe enough to blind one’s funny senses, humor is a fantastic way to distract yourself from fibromyalgia owies, or, fibrowies. That portmanteau formation pales in comparison to but was inspired by this other hilarious blog that is written by a brilliant and hilarious (brilarious) comedian, Myq Kaplan. I don’t think I said “hilarious” enough.

UPDATE: April 29, 2011

While fibro-googling for something (I don’t remember what), I came across this fibro-humor.  Some of it is kind of funny-ish and/or relatable.

The TV (House MD) Identifies with Us!

SPOILER ALERT House M.D. Season 4 episode 16 (“Wilson’s Heart”) is referenced and/or discussed below.

I noticed the following before I had this blog, and I wrote it soon after I started it, so now I’m finally posting it, and updating it as well. House identified with us Fibro sufferers long before Lost, which I discussed previously, did.

It’s always nice when TV characters say things that so perfectly verbalize how I have felt. This happens frequently on House MD. I guess that’s to be expected, since House suffers from chronic leg pain. I wonder how the show would be different if he had chronic leg pain all over his body, as we fibro sufferers do. That is not to say that I am arrogant about fibro-pain; obviously any pain can be torture, and obviously people react in different ways. Even I react in different, seemingly inconsistent, ways to various levels and surface areas of pain.

Anyway, this is one time in particular where House and his pain really connected with me. In the relevant scene, House is nearly dead, and knows that either Amber is dead, or she will be soon. He hallucinates or dreams that the two of them are on an empty bus, and Amber has told him that he must leave this bus, and thus go back to the real, living, world. He tells Amber, “It doesn't hurt here. I don't want to be in pain. I don't want to be miserable.” Amber replies with the Rolling Stones lyric and quintessential House quasi-catch phrase, “Well, you can’t always get what you want,” and House exits the bus, returning to his life of chronic pain.

What struck me is that House wanted to stay where it didn’t hurt, even if that place was death. When I had some of the worst pains I’ve ever felt, and I didn’t know if it would ever end (of course that only happened before I started physical therapy, knock on wood), I wanted to die. I mean, I hoped I would die, to escape from the unbearable pain. That is not to say I was suicidal; I was definitely not, in that I would not have done anything to cause my own death, but I simply hoped for it. I’m glad I didn’t die though, since the unbearable pain did go away.

For those suffering from fibromyalgia or otherwise diagnosed or undiagnosed pain, don’t lose hope – there most likely is an end to the pain other than death. If it is or could be fibromyalgia, I can say from experience that the unbearable part of the pain will go away. Fibro-flare-ups don’t last forever, and they will go away, even if you don’t do anything to help it go away. This is what I’ve experienced, and also my awesome physical therapist mentioned a couple of years ago that those periods of unbearable pain will end, either in seconds, minutes, hours, or weeks (in my experience, I don’t think any of these pains lasted for months at a time, but they might have, since my perception of time has been known to get a bit screwed up).

Knowing that there will be an end (a non-fatal one, um, knock on wood) helps so much; I can tolerate a lot more pain when I know it will end. Of course, the sooner it ends the better, and keeping it from getting to that level is even better. Physical therapy, for me, keeps it from getting anywhere near that level of pain. It occasionally gets close-ish, but when it gets that bad, it doesn’t last longer than a day or two. I have had fibro-flare-ups (well, at least one, about two months ago) after physical therapy started that lasted two or three weeks, however, the pain was not terrible; that fibro-flare-up involved fatigue and maybe weakness with non-severe pain of larger quantities than usual. I heart physical therapy.

The TV (Lost) Identifies with Us!

SPOILER ALERT: Lost, particularly but not limited to Season 6 Episode 4 (“The Substitute”) is discussed below.

It’s nice when the TV verbalizes something that I’ve felt but couldn’t put into words. This happened recently with Lost.

In the final season of Lost, a new reality exists, where the previous five seasons never happened, and rather than crashing on the mysterious island, Oceanic Flight 815 lands safely at LAX as scheduled. There is a question of whether the lives of the passengers would change in the new reality or if destiny would ensure that everything would end up as it was in the first reality. In the case of John Locke, at least one thing changes significantly.

In both realities, John Locke is disabled and travels via wheelchair. However, in the first reality, when the plane crashed, his disability vanished, and he could walk again. In the new reality, without the island, he remains disabled and wheelchair-bound. In the first reality, with his disability gone, Locke never has to face his disability; he never has to accept it. However, in the new reality, it remains a part of his life.

As if by fate, Locke encounters Rose, one of the other passengers from Flight 815, in the new reality. Rose’s story is similar to Locke’s; in both realities she has terminal cancer, which vanishes on the island but remains in the new reality. Rose helps Locke accept his disability, so that he can move on with his life. While helping him find a temp job, after Locke insists he wants to work in construction, Rose tells him, “When the doctors first told me [about my terminal cancer], I had a hard time accepting it. But eventually, I got past the denial part and I got back to living whatever life I've got left. So, how about we find you a job you can do?”

As a fibromyalgia sufferer who also happens to be legally blind (I was born with the latter), I identify strongly with Rose’s words. With each of my disabilities, at different times, I had to accept that this is my life. For a long time with each of them, I dwelled in denial, holding onto hope that a cure would come. I went to doctor after doctor, waiting and hoping for a magical cure. In my late teens, a doctor finally told me there is no cure for my eye condition (Juvenile Macular Degeneration), and when I was finally diagnosed with fibromyalgia and informed there is currently no cure for it (about nine months after my symptoms began), I was finally able to accept that my respective disabilities are a part of my life and I had to learn to live with them. I had to accept that a cure might never come, and I can’t live my life waiting for something that might never happen. That doesn’t mean closing myself off to the possibility of a miracle, or of a cure, or of a new treatment, but it means freeing myself from the binds of waiting for that miracle.

This sentiment is captured perfectly on Lost (in the same episode), when John Locke says to his fiancée Helen Norwood in the new reality, “[I was going to go on] an adventure in the outback, man against nature, but they wouldn't let me go. And, and I sat there yelling at them, shouting at them that couldn't tell me what I can't do. But they were right. I'm sick of imagining what my life could be out of this chair, Helen, what it would be like to walk down the aisle with you, 'cause it's not gonna happen. So if you need me to see more doctors, [or] have more consults, if you need me to get out of this chair, I don't blame you. But I don't want you to spend your life waiting for a miracle, Helen, because there is no such thing,” Helen responds, “There are miracles, John. And the only thing I was ever waiting for was you.”

Fibro-Spoons

[Originally an email, August 8, 2008 (08/08/08!)]

I happened upon "The Spoon Theory," which describes to healthy people what it's like to have an "invisible" and chronic disease. The Spoon Theory is actually about lupus, but this person changed it to be about her fibromyalgia (I think it's a her) by replacing the word “lupus” with “fibromyalgia” everywhere.

It's really good, although there are obvious differences between this person and me (she's on drugs, she has some symptoms that I (knock on wood) no longer have and that I hopefully won't get again but I could, she seems to be more functional than I’ve been so far, etc). The Spoons thing also mentions symptoms that I don’t believe happen in fibromyalgia. For example, I haven't seen anything about fibro causing hair loss (I mean, I definitely shed a lot, but that's different (normal), and also just being sick (in this case, like in a relapse or flare-up) can make you shed more than usual).

Generally, though, it does nicely explain me and my fibro, which is probably why it made me cry a little. I hope you enjoy it, and sorry if it makes you cry too.

[In another email on February 16, 2009 (exactly a year ago, how funny), after telling the friends I was emailing about some improvements I had experienced, I made good use of the spoons-talk, nicely demonstrating the usefulness of the "Spoons" concept in talking about fibro (and other chronic pain diseases or syndromes). I think what I wrote could also provide some useful advice for fellow fibro sufferers.]

Unfortunately, along with all this improving came a reminder of how I really need to be aware of my fibro and not over-exert even if I'm feeling well enough and almost like a normal. Last week at physical therapy, I was feeling quite good and energetic, so when I was on the stationary bike, I went pretty fast, much faster than usual, for a good portion of the 10 minutes. This was all fine until the next 2-3 days, when I was really, really sore, like unacceptably sore (it's normal to be sore for 1-2 days after a new or increased exercise, but this was just ridiculous). So clearly that was a reminder that I must remain aware of my spoons, and just because I’m having a really good day, I shouldn’t throw my spoons in the air and see what I catch, because even now (and probably forever), that could (and did) result in missing spoons for the next few days, and that's just not good.

UPDATE: April 29, 2011

I was fibro-googling, and found this explanation of the difference between a chronic pain sufferer and a normal person.  Like the spoon thing, it is also coming from a Lupus sufferer, and it also applies to Fibromyalgia and probably other chronic pain disorders.  It’s not as catchy as the Spoons, but it does explain that chronic pain sufferers experience pain and fatigue differently than normals do.

Groan...that link doesn't work anymore (as of March 2, 2013).  I tried to find something similar, and the best I could find was this open letter to the family and friends of Fibromyalgia sufferers.  I don't really remember the thing I initially linked to too well, but I think it might have been even better than the open letter.

UPDATE July 8, 2013

I came across this thing with lots of helpful tips for friends, family, and caregivers of people with Chronic Fatigue Syndrome, and I think these things could also apply to Fibromyalgia and other normal-looking but debilitating illnesses.  For Fibro application, simply replace "Chronic Fatigue" with "Fibromyalgia," and add "and owie" wherever it says "tired" or "fatigue."

“Tears like Diamonds”

Every time I hear (or read the lyrics of) Rob Thomas’ “Her Diamonds,” tears like diamonds fall from my eyes (or almost do, I’m usually pretty good at holding back tears, it’s a talent).

I learned some time ago that the song is about Rob Thomas’ wife who suffers from a rare, lupus-like autoimmune disease. Clearly, I totally identify with her; while it is not likely that fibromyalgia is autoimmune, it does have the same symptoms of pain that nothing can help.

The song perfectly captures the misery and helplessness of both the pain sufferer as well as her or his loved ones who watch and want to help so badly, but who just can’t do anything.  It becomes a vicious cycle because then the pain sufferer feels terrible for what we’re doing to our loved ones, and empathy cycles.

The song applies very much to what my life has become, but it really brings me back to the pre-physical therapy days, when my loved ones and I suffered so much from such unbearable pain for so long.  The song is cathartic that way.

The song ends with a bit of hope, as it should, where helplessness and misery give way to the relief that eventually comes.  I don’t know about other diseases, but with Fibromyalgia, the unbearable pain eventually lightens and becomes bearable.  Much like the onset of the pain, there might be no apparent reason for its relief, but it does come in time, or so it has in my experience.  The time can range from seconds to months, but the relief comes.  For me, months or weeks have become seconds or days since I’ve been in physical therapy.  Someone should write a song about the miracle of physical therapy.

Carrying the Hands of Time

I wrote the following 2 years ago, approximately 2 months after my Fibromyalgia began. I intended to post it on my Myspace blog at the time, but then decided against it, not wanting to be public about my illness. So I’m posting it now. (I did end up emailing it to a handful of friends and family at the time).

This was written before my diagnosis (I believe the diagnostic criteria for Fibromyalgia require at least 3 months of suffering). In fact, it was also before my misdiagnosis. In the 6 months that would follow, I had 3 relapses that were significantly worse than the original lapse (flare-up, whatever you want to call it) that I speak of below (I haven’t had any real relapses since I started physical therapy after my diagnosis (knock on wood)). When I wrote this, I still thought this was something (all the doctors could tell me at the time was that it might be a virus) that would go away and have a clear end. I had no idea of the chronic nature of what I was facing.

August 22, 2007

As most of the people who know me probably know, I've been afflicted with some unknown virus (every conceivable cause for my suffering has been ruled out) for almost 2 months, and although the bulk of the severe physical pain it caused dissipated within a week (or more?) some pain still persists. But that's not the purpose of this.

Since I've been fraught with pain and illness, I've had some strange and interesting experiences involving the mutability of the perception of time and a strange dichotomous sense of bodily awareness (or something like that). The latter, as well as other things I've experienced during this illness, have provided me with new insight that goes far beyond empathy for people suffering from various afflictions.

Throughout my illness, my perception of time has been distorted in sort of a disturbing way. For the most part, time, while I'm moving forward in it, moves so slowly. This makes sense, because it's not exactly fun when you're sick, and time sure does crawl slowly when you're not having fun. But when I look back on the time that has passed, the slowness isn't always maintained in hindsight. To the contrary, it seems to speed up when I look back on it --but it doesn't seem to have flown by, rather, it's slipped away: Has it really been a week since my last blood test already?...Where did the time go?...Where did Wednesday go?...Where did July go?...Where was I?...Did I really miss it? Is the summer really almost over? This all may sound normal, but it's different from normal....It's like it's vanished into the nothingness that it was for me. Life has moved forward -- people have moved forward and done things -- while I haven't moved, while I gradually recover from some unknown virus.

In the early days of my illness, my left shoulder was essentially crippled with pain, to the point where I really couldn't move it much if at all. When I would walk (very slowly), I found myself literally carrying my left hand with my pain-stricken but still functional right hand (fortunately I’m a righty). This was an odd experience -- it felt almost as if my left hand was paralyzed, as if it didn't belong to me, it was just some inanimate object. I didn't lose sensation in my body at all (physically or mentally), yet I still somehow experienced what I can only call illusions of detachment and inanimateness, like some strange dichotomy of movable parts and immovable parts. There is a neurological disorder [Somatoparaphrenia?] in which afflicted people believe a part of their body doesn't belong to them. That disorder involves a problem of perception, of propioception, I believe, and that is not what I experienced. However, carrying my own hand around gave me insight into what that might feel like (of course I always knew it was my own hand).

This illness has also given me new insight into what it's like to suffer from arthritis and chronic pain. I know now what it's like to hear that you may have rheumatoid arthritis (which I do not, thank G-d) -- I know now how it feels to essentially be told that this unbearable severe pain you're in right now will last forever, and may continue to not respond to medications. I understand more fully than I ever could before, why commercials for medications intended for rheumatoid arthritis make a point of being as positive, hopeful, and optimistic as possible. I understood these things before, I sympathized and even empathized before, but now I have this insight and understanding that goes far beyond any of that. I literally know what it feels like, and I'm truly grateful that I'm recovering, and my pain will end.

I think this might be too depressing to post....So I'll end with the bright side of being sick...

Being sick (at least for me) is a great way to lose weight! I don't recommend this method of weight loss though, it's very painful.

[Update: At some point, the weight loss stopped, and I began to gain weight. I’ve gained about 25 or more pounds in slightly more than 2 years since the fibro began, and I can’t seem to lose weight, no matter what I do. So I just try not to gain more weight.]

Since I've been sick, I've learned some new things about some of the ailments that were ruled out and about those that were suggested by people. Learning is always good.

My (finger) nails have grown longer and have become stronger than they've ever been before. This likely resulted from not using them (to open things, etc) as much as I do when I'm healthy. Long nails are pretty! Well, maybe they'd be prettier if they were polished.

[Update: My fingernails have remained stronger than they were pre-Rachel (pre-Fibro that is, see previous blog posting for details about Rachel's name). I’m guessing it (also) has something to do with the glucosamine/chondroitin/MSM and fish oil that I think I’ve been taking since I got sick (I’m not sure when I started taking the glucosamine etc, and I know I was wasn’t taking enough fish oil for the first several months of Rachel).]

When I was in the ER briefly in the beginning of this illness, the ER doctor was unbelievably hot...Clearly, that was nice.

I'm sure there are other silver linings, but I think that's a nice sampling. So if I've depressed you, I hope that this portion of this blog has rejoyified you (I'm allowed to make words up, I'm a linguist :-p [Well, I was a linguistics major in college anyway haha]).

I Am Not Unique

I had been thinking about making a blog about my Fibromyalgia experiences, but with a separate Google account so it wouldn't be associated with my name at all since i don't want to publicly come out of the Fibro-closet. I thought I might call it FibroBlog, and I would make my display name FibroGirl, and i would talk about my Fibro experiences.

But fibroblog.blogspot.com and fibrogirl.blogspot.com already exist.

Not only that, but Fibrogirl was 26 (at the time she mentions her age in her blog), lives on the east coast, and seems to not want her identity known. I was 27 when my fibro began, I live on the east coast, and I also don't want my identity known. Furthermore, she named her fibromyalgia Agnes, because she needed a easy way to refer to it when she didn't know what was happening to her with all the pain and doctors etc.

As I read this, it sounded awfully familiar. Replace Agnes with Rachel and it's me.

She says she has no clue why she picked Agnes, it just fit she says. My mom points out it sounds like "agony," Mom is smart.

For me, Rachel was the first name that came to mind when, before I was diagnosed, my sister suggested I give it a name -- she meant like the name of a disease, i don't think she meant a girl's name. She suggested this because i didn't know what to call it, and i would say things like "whatever is wrong with me," or "this weird virus or whatever it is" etc. So I've been calling my fibro Rachel ever since. It's funny, because I actually really like the name Rachel, and I don't think I've ever met a Rachel I didn't like. But I really hate Rachel (my fibromyalgia).

Anyhoo, after discovering that my long-lost fibro-twin had taken fibrogirl, I thought I might use fibrogirl2 as my sub-domain. As of the date of this blog posting, it is still available. However, my sister suggested Fibrotastic, a word I believe she came up with as a result of conversation she and I had a few days before I decided to make this blog, when I said someone was "creeptastic," and she misheard and thought I said "freaktastic." We decided these were great words. I believe all of these wordtastic words was inspired by Scrubs.

Update: August 30, 2010
It seems that since this was written, wordtastic words have become quite the norm, and my explanation of the origin of my use of "fibrotastic" is no longer necessary. However, it does show that I might have been among the first few to be using wordtastic words, and I imagine I must be among the fewer for labeling them as such. Oh, I just googled, there are others using "wordtastic" but I think they are using it for other purposes and with other meanings. So, um, I'm still special and creative, or so I shall believe :-)

The original Fibrogirl's fibromyalgia and blog began a few years before my fibro started, but I didn't encounter her blog until the other day, i.e. after I (also) thought of fibrogirl, and long after I (also) named my fibro a girl's name.

I'm really disappointed about how unique I'm not. I guess this shows how humans are similar, especially when encountering similar experiences and situations, and that should make me happier since i find such things interesting.