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).

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.

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”).

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.”