Friday, June 13, 2008

It Ain't Just Cancer That Sucks

I can get quite annoyed at those who maintain that cancer, as a chronic illness, is unique and requires "special" understanding for those going through it. That is hogwash. My brother and a good friend have MS. I have just fully understood the effect on another friend of her husband's sarcoidosis. Having myself been through noncancer-related chronic fatigue and pain for the last year, I have had some glimpse of the lives of my friends with fibromyalgia.

I stumbled upon a great deal of wisdom this morning in a sarcoidosis support site. I am assuming this is in the public domain, so I proudly reproduce it here. I just wish I could transport back in time about 30 years and put it in front of my young punk face; too many times I was unsympathetic to those with chronic pain, fatigue, and diminished physical and mental function. Geez, I would think; stop complaining and get some exercise or lose a little weight.

May you enjoy this person's writing style as much as I do. If you have empathy for the topic, I need say no more. If you don't, read it a second time, and tuck it into your life experiences file under the "pending" tab.

No Onions and Hold the Malaise—Sarcoidosis and Feeling Like Crap

In the same way that seemingly harmless dew can rust a mighty iron girder until it crumbles asunder, so it is that Sarcoidosis induced Malaise patiently wears vitality down to humbled fragility.

Well now, that might just be a tad too poetic; let me rephrase in my native blue-collar loading-dock vernacular: Sarcoidosis makes ya feel like crap, pal.

If there is one insidious symptom of Sarcoidosis that is understated and most often overlooked by patient and doctor alike, it is Malaise. It’s that overall crappy flu-like feeling where you feel like a swollen, tender, banana slug that just wants to crawl under some wet leaf litter and sleep. And sleep. And sleep. And sleep. Waking only long enough to take a bite of a partially eaten peanut butter cup, sip some warm tableside iced tea, fluff up the pillow and go back to sleep. And sleep. And sleep. And sleep.

When Malaise is acute, one experiences the above. An almost instinctive desire to curl up into a ball and snooze until whatever-it-is seems to pass. Trouble is, no matter how much you sleep (and you can sleep until your jammies are part of your skin) you just don’t seem to get enough rest. You wake, feeling as tired as when you first performed the narcoleptic face-plant. There is a real danger that someone might accidentally call a hearse and you will be zipped up in a body bag and sent to Gently Ditched Funeral Home by way of the rear loading bay.

After a time, all this sleeping has the same effect as psychotropic drugs on the Sarcoidosis sufferer. Reality starts to bend and warp, as one is never sure what day it is or the hour. Did I eat? Did I go to the bathroom? Did I miss that last denture-clenching season finale of Matlock? My God, the dog has left a Dear John letter… he’s even taken his leash. Soon friends and family take the hint and no longer try to entice you to join the land of the living with invitations to dinner, ice cream, or cattle prods. You are left to sleep wherever you have fallen with a few nightlights left on; like the body of Vladimir Lenin, waxy and perpetually in stasis… sleeping forever. If you are lucky, a loved one might occasionally dust your forehead and apply some fresh rouge to your cheeks.

But that is the acute form of Malaise. There is also the laid-back, background noise form of Malaise that permeates the life of a Sarcoidosis chronic. Its like that pot of coffee left on the warmer all day and night, slowly getting more foul with age, ever-present in the air, always in the background, on a very low simmer; so unobtrusive that the Sarc sufferer gets used to its smell without even knowing it. We come to accept that we feel like crap until we don’t remember what NOT feeling like crap ever felt like. And believe it or not there is a comfort in that. In the same way you don’t air-drop coupons for a free Complete Thanksgiving Day Turkey Diner onto an island castaway who has just gotten used to the idea of eating only coconuts; so it is that a chronic Sarkie dreads those days where one feels absolutely normal. It’s a tease. And it makes that background, low hum, low grade fever of Malaise all the more apparent the next day. All of this adding to the already top-heavy pile of psychological baggage we have to endure that resembles the teetering back of the Clampett’s truck on their first foray from Tennessee to the Beverly Hills. Goats and washtub included.

When someone casually asks me what Sarcoidosis is (and they really aren’t interested in anything but a sound-bite answer) I usually site Malaise in this quick retort, “Imagine having the Flu everyday, all year, for the rest of your life.” That usually leaves them nodding blankly as their little sound-bite minds try to wrap around the concept, and I can slip by and walk away.

Sometimes I refer to Malaise as Mayonaise, both for the phonetic word-play and the fact that that is what it feels like sometimes; the once crisp fresh cool lettuce of my life suddenly smothered with a glop of tepid congealed cholesterol laden fatty goop. Besides, as I have mentioned before, Malaise is too pretty a French sounding word for feeling like crap. If we are going to use a French term for it, lets use Merde.

“J'ai la Sarco├»dose et je me sens comme la merde!”

Hold the mayo.