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.