white noise

The following passage is taken from the Declaration of Independence: “He is at this time transporting large Armies of foreign Mercenaries to compleat the works of death, desolation, and tyranny, already begun with circumstances of Cruelty & Perfidy scarcely paralleled in the most barbarous ages, and totally unworthy the Head of a civilized nation.”

Sadly enough, it’s a fitting description of our current president.

In the effort to learn how to pace myself, I keep returning to this Aesop’s fable:

The Hare and the Tortoise

A HARE one day ridiculed the short feet and slow pace of the Tortoise, who replied, laughing: “Though you be swift as the wind, I will beat you in a race.” The Hare, believing her assertion to be simply impossible, assented to the proposal; and they agreed that the Fox should choose the course and fix the goal. On the day appointed for the race the two started together. The Tortoise never for a moment stopped, but went on with a slow but steady pace straight to the end of the course. The Hare, lying down by the wayside, fell fast asleep. At last waking up, and moving as fast as he could, he saw the Tortoise had reached the goal, and was comfortably dozing after her fatigue.

The moral of this story? Slow but steady wins the race. I don’t know about other Fibromites, but I do know that I’m horrible about pacing myself. I’ve grown up and lived in a society that puts vastly negative values on idling, so in my head, if I’m not moving forward all the time, I’m not productive. Sit down for 15 – 20 minutes to rest every 2 hours? In a normal 8 hour work day, that’s almost 1.5 hours of downtime. How many supervisors (at least in the U.S.) would consider this acceptable office practice? I know maybe one.

Yet, if I don’t pace myself, I can’t function at all. In trying to cope and work around this illness, I’ve determined that I have approximately 20 hours of full production a week in me. The problem with this? It includes simple tasks like getting out of bed, showering, and getting dressed.

The effects of FMS (and CFS) on my life are profound. Having to learn how to schedule my days into some semblance of efficiency is sometimes — at best — nerve wracking. Pacing is simple when I need only worry about me. Once I start adding in other factors: Jon, doctor’s appointments, classes, and any outside obligation, managing time at my own pace gets much more complex. I try to make appointments in spaces where I know I’ll have time before and after to slow down and take a break. There are some days, too, when I know that I’ll just have to grit my teeth and bear the pain, and the nausea, and the dizziness, and the heat. It’s difficult, though. The more I hurt, the harder it is to contain myself emotionally. When I worked at Weco, there were days when Scott (my supervisor) had to watch me sit at my desk and cry. No amount of antidepressants can control this type of suffering.

Last night, Jon and I attended a lecture on Fibromyalgia given by Don Bivins, MD. I was quietly impressed, but recognize that I’m also afraid to hope. I’ve been through at least 15 doctors in the past decade, and all with pretty much the same result: I still hurt … all over, every day. Most of those former doctors simply wanted to pump me full of antidepressants and call it good. I’ve been diagnosed, undiagnosed, misdiagnosed and rediagnosed. From diabetes to obesity (I’m currently 30 lbs. overweight; 50 if I want to be a twig), to Lyme disease and depression, I’ve had so many labels in the past that it’s hard to keep count.

I’ve listened to comments ranging from “it’s all in your head,” to “it’s a fad diagnosis,” to “if you’d just lose weight you’d get more attention.” Oddly enough, I was nearing peak condition when my problems began. I had plenty of attention (not that I wanted much of it) and for the first time in my life, I was beginning to feel good about myself.

I spent the latter half of my youth living with horrible knee pain, often getting the same sort of feedback from doctors I get now. I was 12 when a doctor explained to my stepmother, Barbie, that I was merely a hypochondriac looking for attention. He sealed my fate and thanks to him, I suffered miserably for 13 years. From that moment on, the most help I could get was the occasional “put ice on it,” from my parents. Finally, at age 23, barely able to walk and unable to work, I found my way into the care of an orthopedic surgeon. He looked over my xrays, crossed his eyes at me, and asked how it was I managed to still walk at all. That was AFTER an xray tech reported nothing wrong with my knee.

In December of 1994, the same surgeon (Dr. Wells?) performed arthroscopy on my left knee, went in and cleaned up the shredded cartilage attached to the under side of my thigh bone (the medial condyle). He also repaired or removed a plica (a fold of soft joint tissue in the knee). Afterwards, he said recovery was up to me. He also explained that the damage done to the cartilage was irreparable and if I wanted to keep my knee, I’d have to limit my activities and avoid anything that causes the knee joint to grind … especially horseback riding. My time on horseback had already been greatly reduced. Although I have to baby it sometimes, my knee functions grandly about 95% of the time.

Go figure.

I suppose it makes me sound like an evil, vindictive bitch, but there are times when Barbie complains about how much she hurts that it slips to the tip of my tongue and I just want to tell her, “go put ice on it.” Of course she doesn’t deserve such a bitter response; I know her pain is real. She’s battled adenoid cystic carcinoma since 1980. After 13 surgeries on her lungs, there’s no doubt in my mind that she’s extremely uncomfortable. Her oncologist dismisses her pain quite easily. If he’s so eager to convince himself that she’s not suffering, it makes me wonder what chance those of us with Fibromyalgia have in the battle against our own pain.

I’ve hurt so long, I can’t remember what it’s like to be without pain. Since December of 1995, when the Fibromyalgia developed, I’ve found that nothing outside of morphine stops my pain, and relief is only as long as the drug is present in the system. I get minimal relief from anything else I’ve tried, and with all the treatments available, someone may as well reinvent snake oil remedies.

Tonight while watching television, I picked up Barbara Winter’s book, Making a Living Without a Job: Winning ways for Creating Work that You Love (Bantam Business; 1993), and started to read. The first three chapters focus on self-esteem. My whole focus in therapy the last 6 months has been — you guessed it — self-esteem. I’m not sure anymore what I think or believe about God, but I do feel there must be some validity to spirit guides or angels that watch over us. The message I hear is clear: stop looking outward and center myself again. How long has it been since I gave myself permission to be who I am?

Too long, apparently.

I’ve felt compelled to write, or — more accurately — to think out loud. I’ve been longing for someplace where I can feel complete and where I can be myself. The whole feel-good, pretend-we’re-okay sort of mentality is getting on my nerves. Not feeling at liberty to say “fuck it,” or “fuck you,” gets on my nerves. For a while now, I’ve begun to think that perhaps I’m losing myself … forgetting who I am.

Well, I can’t allow that, now can I?

Mostly, this site will lend itself to easing the frustrations of having Fibromyalgia (and Chronic Fatigue Syndrome, as it seems I’ve overlooked this bit of relevant history). I hope that documenting my adventures will be of some value — not only to myself — but also to passers-by.

Comments and thoughts are always welcome. General nastiness will be met, either with equal nastiness, or complete eradication — depending on my mood at the given moment.