18 September, 2007

It *IS* That Serious: Notes on a Fibro Attack

Note: This is my first post since one of my dogs, Frank, died last week, so if I seem less articulate (or possibly angrier) than usual, that is why. RIP, Frank.

Right now, I am weighing the pros and cons of a.) going back to bed; or, b.) attempting to take a bath, which may make me more exhausted than I already am, though it may also bring a few minutes of relief from physical pain.

Most people do not have to make this sort of choice. Some, when confronted with the fact that a friend, or acquaintance, or relative has an "invisible" disease or disability, may think or say something to the effect of, "Oh, it can't be *that* serious. All she/he has to do is get out of bed/think positively/lose weight/stop consuming dairy products/et cetera." To someone who has never experienced having a chronic health condition, it sometimes doesn't look that bad. The average person may think, Well, if I had that, I would do x, y and z differently, and then I would get better. Why Jane or John isn't doing x, y or z is beyond me! The average person may think they know the key to "getting better."

What I am about to say is harsh, but, as noted scholar Robert Jensen says, the truth can be very painful.

If you think you know how to "beat" chronic illness and you do not have a chronic illness or medical training in the field, you do not know shit.

I had great plans for today. I was planning to wake up early, take my little Yorkshire Terrier for a nice long walk so that he could spread individual droplets of pee on as many trees as possible, and then I would spend the rest of the day writing, but only one of those things happened. I took Winston on an abridged walk and then returned to my apartment, exhausted.

I then slept for most of the day. This was not what I had planned. I was feeling bad yesterday--fatigue and back spasms--so I had a bit of warning, but I was completely unprepared for the backache-that-somehow-got-worse-and-turned-into-a-sinus-headache extravaganza. Some of the time, I have "warning" signs that come before an attack: intense joint and muscle pain, fatigue that affects nearly everything I do, pain in odd places such as my temples, foot arches, or heels. Some of the time, I do not have these signs and, as a result, am promptly knocked upon my startled ass for yet another round.

So today, here is where I am: I cannot finish anything--be it a cartoon drawing about having an attack, lunch, or making an iTunes playlist. Indeed, writing this post has taken over an hour and a half (I can usually crank one out in less than 45 minutes). My head feels like it's been stuffed with that material used to make copper dish-scrubbing sponges, and Sudafed has yet to make a pill with codeine in it, so I'm stuck. My feet are both sore and restless, and I don't know whether I should soak them to get rid of the first symptom, or dance around like a maniac to get rid of the second.

To employ additional metaphor at this point in order to describe the fatigue, hand, arm and back pain would be a good strategy, but how does one describe incredible pain?

I suppose, then, that it would be best to draw a comparison by invoking one of the great classics of modern film, and that film is Stanley Kubrick's 2001: A Space Odyssey. The final twenty or so minutes of that film are what I think of whenever I say the words "Fibro attack." In the film, the astronaut, Bowman, travels across time and space, where, finally, he witnesses his own process of aging and eventual death. Though the final frames of the film (where he is reborn) seem full of hope, there are certain words that come to my mind when I think of this sequence. Alienation. Loneliness. Bowman is literally trapped--he must go through the process of wandering time and space alone, until he witnesses his own pain and decay. Someone who has a chronic illness must go through something similar; while we may not transcend the boundaries and rules of space and time, illness is a solitary thing. Unless you have a parasitic twin attached, it is unlikely that anyone will be able to intimately know what your experience is like--both in the physical and emotional sense.

That is precisely what can be so frustrating about illness: it is solitary, it is painful, and there is no polite way to explain to well-meaning, non-ill people that it really can be that serious.


9 comments:

RioIriri said...

I am so sorry about your little one. I haven't quite known what to say, but I have been thinking about you and your loss, and I want you to know that I understand how devastating it is.

On the subject of people who don't have a fracking clue, I wrote this a while back, and it's sort of relevant:
http://rioiriri.blogspot.com/2007/05/being-me.html

geo said...

I'm sorry to hear both of your loss and of your physical pain.

We can listen and try to hear you describe something that we can only attempt to understand as best we can.

We can though fully accept that your pain and struggles are real and important in your life.

Good Luck!

Emily said...

Thank you for posting this (someone linked from a fibro community). I needed it after I woke up today and determined that walking is going to be mostly out of the question today (my worst fibro symptoms are always foot pain). *sigh*

amandaw said...

I don't have much to say except that I do understand. I collapsed on the couch yesterday and unexpectedly fell asleep, some 4-5 hours before my usual bedtime. I still had things to do, but they ended up not done, or else my husband had to take care of them.

You never know what's going to happen. Sometimes you are warned, sometimes not. And even having warning isn't easy; the signals aren't always easy to interpret and it can take you years to get it down just for one case, much less everything you go through.

Best wishes for you, and my condolences on lost friends.

Jen said...

Thankyou for this post. I followed the link from a fibromyalgia community. Now I don't feel alone in randomly not being able to do anything, and all the useless advice people give me :-D

STF said...

Hi,

I dig that... My thought on those people who don't have a clue and don't want to : denial out of fear...
Sickness to them is either something you overcome thanks to magic pills or miracle surgeries, or something that is fatal and kills you rather quickly. Not something for which there is no cure, that won't kill you but will change every aspect of your life, and that will only be partly manageable through personal effort, dedication, lifestyle and diet changes, etc.
To admit that someone else developped such an illness without knowing how it happened is too big of a threat... It means it could happen to them...
An what about that "... but you don't look sick" line? As if "diabetes"/ "epilepsy"/"narcolepsy"/ "MS", etc. were printed on people's foreheads...

Melanie said...

I accidentally clicked "friends" on the Georgia tech group page, so I read this instead of my lj friends page.

I don't know what chronic illness you have, but I have one as well, and I hate people who tell me what to do to make it better. I've heard so many "magic" ways to rid my life of migraines (mostly with no aura) it's not even funny. It makes me wonder why people think my specialist wouldn't know (or even tell me) about this magic wonder-cure. So far from what I know the score is like Doctors 100,000,000,000 common 'retards' 0.

wooza2 said...
This comment has been removed by the author.
wooza2 said...

I'm so sorry about your dog's death. We've had to have two put to sleep, both for cancer, and will soon have to face making a similar decision for our current dog because of his deterioration related to his age. It's devastating to lose these close and loving friends, no matter what the reason. Please accept my sincerest sympathy.

I'm not surprised that, in the wake of your loss, you've had a flare-up of the fibromyalgia. I also have the disease, which is compounded by arthritis in both hips. I've been disabled for over two years while I've found a surgeon to replace my hips. There has been a side benefit from the arthritis - I was able to leave work because of it; it was so overwhelmingly painful that I was classified as completely disabled by my doctor. Quitting work helped the fibro a great deal. My stress levels dropped like a stone when I left and I feel a great deal better than I used to. I also have a good rheumatologist who stays on top of the research and keeps me well stocked with appropriate medications for the flare-ups.

People mean well, but they just don't understand medical conditions if it isn't cancer or if they can't see the problem or haven't experienced it themselves. When I've explained to friends that fibromyalgia is like arthritis of the muscles, they seem to understand a little better what I'm experiencing, including the impact of the pain on my day-to-day activities.

I sincerely hope that, as time passes, things get better and better for you in every way.