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.”

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.