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”).