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.