llbbooks ([personal profile] llbbooks) wrote2011-10-09 04:59 pm
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"Why are you always in pain?"

(Originally posted at Facebook on February 28th, 2009.)

In the middle of a crazy shift on Friday, a co-worker asked "why are you always in pain on Facebook?" It occurred to me that a lot of my statuses lately and a lot of my discourse references something that I'm pretty sure the vast majority of you are unaware of about me because I almost never talk about it, and for things I'm saying to make sense, I need to talk about this.

I have fibromyalgia. For those unaware of what that is, I'm going to quote Wikipedia's overview description, as it describes it better than I can:

 

Fibromyalgia, meaning muscle and connective tissue pain (also referred to as FM or FMS), is a disorder classified by the presence of chronic widespread pain and a heightened and painful response to gentle touch. Other core features of the disorder include debilitating fatigue, sleep disturbance, and joint stiffness.

 

Fibromyalgia affects you physically. The aforementioned touch sensitivity is one of many reasons I'm generally not a touchy person, the smallest of touches really do hurt, and there are very few people I can trust to be mindful, few people I'm willing to take the chance with. The constantly present pain, which responds in an ugly way to the climate of the Ohio Valley, with its hellish, sudden changes in temperature and humidity, and is nearly always coupled with exaggerated joint stiffness. The lack of restorative sleep. And many others.

Fibromyalgia affects you mentally. Sufferers generally refer to this part of it as "fibrofog," and the best way I can describe it is like having each individual brain cell wrapped in gauze, unable to communicate with the others or the outside. Incredibly frustrating, maybe the most frustrating part for me.

Fibromyalgia affects you emotionally. Aside from my continued logistical issues and lack of license and car (and we are not going there, so not going there right now) I don't have the energy to live as people my age do. Even if I did have a car and license I wouldn't usually be able to go everywhere and be with people, get to do as many things as everyone else. Incredibly demoralizing.

There are several theories as to how, exactly, you get fibromyalgia, ranging from genetics to stress-induced to... well, there are a lot of them. There is no cure. You can alleviate the pain with medication (fibromyalgia has kind of become the lower back pain of the 21st century because there is no conclusive test for it, so you can't prove (or disprove) its existence, but you can sure claim to have it to get controlled substances. For the most part, I love my job, but I detest listening to junkies slur mispronounced drug names at me and claim they have fibromyalgia. Evidence doesn't seem to point to it being degenerative, but I don't know if I believe that yet, as I have noticed a marked decrease in my own functionality over time, and a fair amount of those I know that have it seem to have as well.

~~~

Come back with me to 1996. That year and the rest of the century was a long slog through hell for me and I'm not going to go into details about that because that isn't what this essay is about, but it was horrible. Bad situation after bad situation no matter where I was. No soft landing, every second stress filled. Out of that, I started noticing aches, body-wide, and this manifested itself in my beginning to take hours and hours every night to do my homework because my hands hurt too much to write. They thought I had carpal tunnel syndrome at first, tried to accommodate me by providing me with an AlphaSmart (this is a picture of the first model I ever used. Sweet little machines,) and giving me extra time to finish things, but the teacher I had that year failed me at one point. I felt like I was trying as hard as I could and it wasn't making a difference, that she was unsympathetic and didn't understand or care what was happening with me and the grade was a representation of that. I blew up at her. Screaming match in the middle of a classroom in front of all my classmates, culminating in my ripping up the report card right in front of her. One of my finest moments, to be sure. (For the record, I still believe that. She always screamed at us, screamed at me more than any teacher I've ever had and I never understood why. I later apologized, but I wasn't apologizing for what I said, I was apologizing for saying it in such a manner.)

Prior to this, I was a tomboy. At school, I liked to run and play kickball, I liked the physical games. At the time, we'd just recently moved into the house we're in now, and I was more of a tomboy than John was. I was the one climbing trees (we had a tree in our front yard up until a year or two ago that I used to climb up into and read in at this time.) I was the one taking bikes in kamikaze vaults off near-vertical drops. I was the one roaming around outside doing all the stupid shit kids do when they roam around outside. All that changed when my pediatrician diagnosed me with Fibromyalgia. The year was 1996. I was 9 years old.

~~~

So, we know the definition, but what does it mean? What is it like?

This is where description breaks down, because unless you have it you can never understand, and for this part I'm going to re-use something I recently said in another venue.

I am fully capable of lecturing, chapter and verse, bottom-lining what fibromyalgia is and what it is not, treatment etc. But I can't tell you what it means. I can't tell you that that old saw about how some people with pain issues not needing to watch the weather because their joints will tell them? Is true. I can't tell you about having your concentration shot to shit and ridiculous not-so-occasional mental confusion. I can't tell you about learning to walk, learning to move in ways that aren't as hard on your joints as the others. I can't tell you about the nights I kill my back from bending up and down so much because kneeling is too painful. I can't tell you about the constant mental accounting of body parts, where they are in space relative to the rest of you and how they're being treated, and why, if you can, you should try to kneel instead of squat. I can't tell you about trying to be discreet about pushing off of something in front of customers when rising from that position. And I hope you'll never have to know about the feeling you get when the shelf you thought was steady enough wasn't, you go toppling and things rain down. (That one's fun. Especially with an audience.)

I can tell you how it affects my day-to-day life. The fibrofog means that my work performance is inconsistent at best. Sometimes I'm right on top of it, and there are many more nights I might as well not be there at all. I'm not... as posessed of my mental faculties as I once was, no telling how many IQ points I've dropped over the years. I have very little energy, so I have to allocate it as effectively as I can. This and the car/license debacle means, by and large, no social life. (This is why I'm always available.) I just don't have the energy. When I'm not at school or at work, I'm either here online or sleeping, I need a lot of sleep. I mostly sit on the sidelines and watch other people go off and do things.

It means it is going to take forever to get through school. I should be graduating in a few months, but I can't take the kind of courseload it takes to finish college in 4 years.

It means that I have to be mindful of my energy levels. I only have enough energy to do so many things, which means I have to cut out the bullshit and only do what is really important. Given this, every friend means more to me, and if I'm spending my time with you it means that you bring something good to my life, and that I enjoy our time together.

It means that I am in pain nearly all the time, and that I'm good enough at hiding it by now that you won't notice it unless it's really bad. I was 9 when I was diagnosed. 9 year olds don't get pain medication. 9 year olds get to learn to deal with it. The combination of the fibromyalgia, the concurrent bullying Fern Creek's administration never moved to stop and the issue that I believe started all this shit so long ago was the crucible that forged me into the person I am today. I'm stubborn. I'm tough. I've had to be.

It means that I am exceedingly aware of exactly what I can't do and what I can't, of the fleeting nature of youth and time. I am excruciatingly aware of what I used to be able to do and cannot anymore, and what I'll likely not be able to in the future.

~~~

The vast majority of you, about 2/3 or so, are, to my knowledge, unaware of all this. If you're one of those, assuming you've read this far I imagine you're wondering why I never said anything. I was 9 when I was diagnosed, and people were only now starting to be aware of it. I did tell people, at the beginning, but when I did, either people didn't know what it was and I had to explain, which was hard because I didn't quite know myself, or they did know and didn't believe me. After awhile it was just easier not to say anything and just let people think I'm even more eccentric than I really am.

I also don't tell people because I don't want pity, and I don't want to be treated differently, even though I need it sometimes. I guess what I'm trying for is to give you insight into one of the biggest parts of me, into why I see the world the way I do.

So. When I update my status and mention pain, that's what I'm talking about. If you have questions about anything I've written here, please feel free to ask. I might not be able to answer some of it in public, but I will answer you one way or another. If you took the time to read this, it means a lot to me and I appreciate it. I should have written this years ago, but I didn't know how to say it.