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.