Thursday, September 16, 2010

National Chronic Invisible Illness Awareness Week

Some of you know that I was diagnosed with fibromyalgia in 2007. Few of you, or anyone else for that matter, including me, really know what that means.  I know what it means to live with fibromyalgia.  I've read articles, books, and medical journal pieces about it, but there is no clear, definitive answer as to why this family of symptoms seem to hang out together.  No one fibro case is exactly like another.  The medical community is even considering changing the diagnostic criteria (specifically the 11 pairs of "tender points") because they're not as definitive a marker as they are oft made out to be.

For an introduction to the syndrome, see the National Fibromyalgia Association's webpage.While I would never downplay the utterly devastating effect that chronic lack of sleep and exhaustion and pain have on my life, one of the worst things about having an invisible condition, let alone a very poorly misunderstood one, is that if I want people to understand what I'm experiencing, I have to tell them, lay it all out. And that can be annoying and frustrating in itself--I'm tired, I feel like I've been beaten with a mallet and someone filled my bones with liquid lead and my brain with fog. The last thing I want to do is to try to explain that to someone at the time. If I don't, however, I'm viewed as inexplicably "grouchy," "negative," "unhappy," "insert your favorite unpropitious adjective here."

I just want to be "normal" (whatever that means)--I want to be able to have full, filling, days, come home at night, take care of what I need to do at home, go to bed and blissfully slip into sleep. I would like it to not take 20 times more energy to deal with basic interactions because I'm fighting the desire to just put my head down on my desk and sleep, or trying to ignore the sharp pains and dull aches in my arms, hips, shoulders, neck, back, legs... I would like living to take less effort so that I could have more patience with others.  As it is, I'm so frustrated with myself, that extending patience to others becomes doubly difficult. I realize that that still makes me suck as a human being--that's why its on the list of things that I would like to change. I also know that there is no miracle cure, that drugs have limited application, and that I have to be committed to maintaining a lifestyle that allows me to function at the highest level I can, which, as anyone who has tried to make any positive lifestyle changes knows, is much easier said than done, especially when you are lonely, ambitious, and have a wide-range of interests.

I also don't much like talking about living with fibromyalgia because I know that a) I sound like a whiner, and b) even if I don't, people don't much like hearing endless negative crap. Yet, this goes back to the beginning of this post--I have to talk about it if I want the people in my life to understand me...and to be able to help me.  I don't just mean in the sense of helping me do tasks that need to get done, but to support me with the lifestyle  I have to maintain (exercise, meditation, relaxation, sleep, healthy eating) and help me sort out all the crap in my head and heart that hurts. If I want them to understand that I'm not just a miserable, angry, negative person, but that I'm miserable, angry, and negative for a reason. I don't want to be pitied, and I certainly don't want my anger and negativity validated--they don't serve me and they don't help me serve others. I need to lay them down, but part of getting to that place is feeling heard, connected, understood; feeling like I can ask for and receive help without feeling like a burden or useless or ashamed.

To that end, I'm posting this as part of National Chronic Invisible Awareness Week.  I've also included their meme:

30 Things About My Invisible Illness You May Not Know
  1. The illness I live with is: fibromyalgia
  2. I was diagnosed with it in the year: 2007
  3. But I've had symptoms since: the mid-1980s.
  4. The biggest adjustment I’ve had to make is: trying to pace myself to avoid sprints and crashes. Asking for help.
  5. Most people assume: that I'm young and in great health and/or that I'm "just" a grouchy person.
  6. The hardest part about mornings are: getting up at all. Fighting through the exhaustion and stiffness.
  7. My favorite medical TV show is: House
  8. A gadget I couldn’t live without is: iPhone
  9. The hardest part about nights is: getting to sleep, especially when I can't get comfortable either from pain or hypersensitivity.
  10. Each day I take 1 pill & vitamins. (No comments, please) <-- Too bad. I currently take no medication for fibromyalgia. I recently weaned off the two I was taking because I wanted to see where my body is on its own and determine if non-pharmacological treatments could improve my situation as, if not more, effectively.
  11. Regarding alternative treatments I: am pursuing chiropractic, massage, meditation, and therapy.
  12. If I had to choose between an invisible illness or visible: I would choose: visible, and better understood.
  13. Regarding working and career: It is a daily struggle to function, focus, and be productive. I could do so much more if I were well-rested and not in pain.
  14. People would be surprised to know: how truly miserable I really am, and how hard it is for me to function.
  15. The hardest thing to accept about my new reality has been: the isolation, the loneliness, and the mounting despair.
  16. Something I never thought I could do with my illness that I did was: go to grad school and work full-time and maintain my 4.0.
  17. The commercials about my illness:  make me want to punch things. Instead, I mute them.
  18. Something I really miss doing since I was diagnosed is: I've been living with pain and exhaustion for so long that the diagnosis didn't really change anything.
  19. It was really hard to have to give up:  It is hard to say no to things I want to do. It is hard for me to accept not being able to do things, so I push too hard and then fail.
  20. A new hobby I have taken up since my diagnosis is: biking.
  21. If I could have one day of feeling normal again I would: Heh - I do have good days, but one day doesn't really help much overall. In fact, they're almost depressing because I realize that a) if I act on the energy I feel, I'll have a flare, and b) what I could do if I could sustain that level of energy.
  22. My illness has taught me:  This should read " teaching me," because I definitely have not completed my lesson. My illness is teaching me patience, compassion, and to ask for help.
  23. Want to know a secret? One thing people say that gets under my skin is:  "You're too young to know about pain." Yeah, jagoff, only old people know what it feels like to feel like you've been hit all over with a mallet and someone filled your bones with lead and your brain with fog... How could I possibly know anything about pain?
  24. But I love it when people:  Just help without me having to ask, making a production about it, or asking how I'm doing. When people neither treat me like an invalid, nor as though I'm "well." When they just understand that I always hurt and I'm usually exhausted, and a little help getting through the day is nice.
  25. My favorite motto, scripture, quote that gets me through tough times is: "When you find yourself going through hell, keep going." -- Winston Churchill.  "Be not afraid of growing slowly. Be only afraid of standing still." --Chinese proverb
  26. When someone is diagnosed I’d like to tell them: Take care of yourself, even when it's hard and exhausting. If you don't make it your #1 priority, you will not achieve anything.
  27. Something that has surprised me about living with an illness is: how having a name for it doesn't make it any less frustrating at all because fibromyalgia is so poorly understood--even by the medical professionals who specialize in it.
  28. The nicest thing someone did for me when I wasn’t feeling well was: give me a hug and clean some of my house for me so I wouldn't be annoyed by the dirt and doubly angry because I was too tired and frazzled to take care of it.
  29. I’m involved with Invisible Illness Week because: I get tired of feeling alone and misunderstood.
  30. The fact that you read this list makes me feel: like someone is paying attention.

1 comment:

  1. "Be not afraid of growing slowly. Be only afraid of standing still." --Chinese proverb"

    That's a good one!
    I've been feeling rather still, growing horizontally lately!
    Hugs and Prayers to you!


Why is this place called Rough Branch?

Rough Branch is a reference to Wendell Berry's "mad farmer" poems. Berry is an agrarian populist poet, and advocate for sustainable agricultural practices. I don't agree with every position he takes, but his reverence for the beauty and balance of the natural world, for the preciousness of the life that runs through it (including our own), and of the community that sustains both the land and each other, speaks to my heart.

Over the past few years, I have sunk myself into the soil in my back yard, and into the community of neighbors that surrounds it, and it has begun to restore me. My garden is not just a plot of dirt providing vegetables for the salad bowl, it is an act of love, a place of profundity and awe. If you knew about the ecosystem that lives in but one gram of good earth, you would be humbled, literally, to the ground.

Berry's poems are passionate calls to live--deeply, profoundly, fearlessly. To step out of narrow-minded egotism, to secede "[f]rom the union of self-gratification and self-annihilation, [to] secede into care for one another, and for the good gifts of Heaven and Earth."

And so I have made my own nation small enough to walk across. I have named the small corner of the earth I steward Rough Branch. I have declared myself free of ignorant love, and I secede...

From the union of power and money,
from the union of power and secrecy,
from the union of government and art,
from the union of science and money,
from the union of ambition and ignorance,
from the union of genius and war,
from the union of outer space and inner vacuity,
the Mad Farmer walks quietly away.

There is only one of him, but he goes.
He returns to the small country he calls home,
his own nation small enough to walk across.
(From "The Mad Farmer, Flying the Flag of Rough Branch, Secedes from the Union")
The Mad Farmer challenges us to reconnect, to resurrect our land, our communities, and our souls.
So, friends, every day do something
that won't compute. Love the Lord.
Love the world. Work for nothing.
Take all that you have and be poor.
Love someone who does not deserve it.

Denounce the government and embrace
the flag. Hope to live in that free
republic for which it stands.
Give your approval to all you cannot
understand. Praise ignorance, for what man
has not encountered he has not destroyed.

Ask the questions that have no answers.
Invest in the millennium. Plant sequoias.
Say that your main crop is the forest
that you did not plant,
that you will not live to harvest.

Say that the leaves are harvested
when they have rotted into the mold.
Call that profit. Prophesy such returns.
Put your faith in the two inches of humus
that will build under the trees
every thousand years.

Listen to carrion -- put your ear
close, and hear the faint chattering
of the songs that are to come.
Expect the end of the world. Laugh.
Laughter is immeasurable. Be joyful
though you have considered all the facts.
(From "Manifesto: The Mad Farmer Liberation Front")
All quotes from Wendell Berry.