So that last post didn't quite carry through as intended. I missed on explaining the middle step.
It's an unfortunately real commentary on how fast fibro symptoms can change. At this point, I'm caught in a spiral that usually leads to an ER trip -- pain levels get too high, I start to throw up from pain, I can't keep my maintenance meds down, I get dehydrated, and then I end up in the ER getting an IV for fluids and to get meds back in my system quickly.
It's frustrating to go from the "real life" goals to the "I'm a patient" goals in the span of an hour or two. I feel like I'm living a double life. I don't need a reminder that my body has a hitch in its functioning. I get that every day. But I get the swift kick version of a reminder multiple times a year anyway. Today's one of those days.
Thursday, February 16, 2012
an exercise in flexibility
Original goals for the day:
New goal:
- weed around lilac and peach treelings
- put away laundry
- wipe down dining room table
- sort mail
- read up on starting seeds
- a little yoga
- play with the kids
New goal:
- stay out of the hospital
Monday, February 6, 2012
The One
Everyone has their One. That one episode of Dirty Jobs that just turns your stomach. It's my favorite show to watch any time I'm in the hospital or ER, because it's damn distracting and comes with a hefty silver lining. I mean, instead of being in a hospital bed tied to an IV, I could be doing THAT. But tonight I found my One. Hagfish, aka slime eels. That much snot should never exist in one place. Beyond nasty. Yeeeuch. Thank you, Mike Rowe. I have found my gratitude for the day, and it's that I never have to catch, sort, or process slime eels. Ever.
Friday, February 3, 2012
self-love
I'm sitting here petting myself. Wrist to shoulder, ankle to hip, over and over. Go, go lymph drainage. Don't hate me because I live an alternative life style.
Friday, December 2, 2011
Is there an Option C?
Can't take the one med that ever really worked for nausea because it can cause Parkinson's-like nerve damage. Permanently. Yeah, I'll take the nausea, thanks. Tried some food today. Fail. Tried some vitamin C. Epic fail. Tried some crappy ginger ale with no real ginger and a butt-load of high fructose corn syrup, which I generally avoid like the plague. Go figure. That one worked.
Sometimes you can't win for losing.
Sometimes you can't win for losing.
Friday, November 18, 2011
pain redux
There's no such thing as cockiness when it comes to a chronic pain syndrome. There's no room for it. Just when you think you're on a good streak, your brain reminds you that there's no cure, there's no real remission, there's just the constantly swinging pendulum of symptoms -- if the pendulum were suspended in the middle of a hurricane, swinging in an erratic 360 degrees with wind gusts sending it into an unpredictable vertical spin.
All those words you apply to someone with a life-altering illness just don't apply in this scenario. Fighting, battling, overcoming, conquering, defeating -- them's fightin' words, and you can't fight the undefeatable. We need a new vocabulary, one that acknowledges the very different nature of an incurable chronic illness.
grace
steadfastness
cheerfulness
flexibility
endurance
strength
acceptance
It's such a different world. Through inspirational stories, we learn that refusing to accept limits is the way to beat an illness. Powering through and maintaining your pre-illness life shows strength and determination. That willpower and hope can beat a terminal diagnosis. Chronic illness doesn't speak this language. Refusing to accept limits results in more pain, more time lost, a longer recovery back to the New Normal. Powering through in an attempt to maintain your previous life does the same thing. Willpower and hope keep you from shortening your own lifespan in an effort to escape the pain but they don't change your diagnosis.
It isn't giving up to accept your new limitations. Acceptance is sanity. Acceptance means not beating your head against the wall. In a Head Vs. Wall battle, the wall will win. The win condition is: Not engaging in that battle in the first place. It takes strength and grace to face down the decades of pain in front of you and accept that you can still have a fulfilling life even with chronic pain factored in. It takes endurance and steadfastness to deal with the pain. Cheerfulness lifts you up, and lifts the spirits of the people around you who want to help you and can't. It's hard to be the one with a chronic illness. But it's also painfully hard to love someone with a chronic illness, to know that you can't slay that dragon for them. And flexibility is not to be underrated. It takes real flexibility to handle the essential unpredictability that a chronic illness brings to your life. When you can't predict if you'll be able to think clearly, move easily, eat without unfortunate consequences, drive, lift, balance, interact, it's difficult to hold down a job, volunteer, make a social commitment, promise your kids anything. Incorporating true flexibility into your mindset will allow you to take advantage of the good moments to their fullest without promising things you can't deliver.
Chronic illness has its own language. My battle isn't beating my illness. It's learning my new language.
All those words you apply to someone with a life-altering illness just don't apply in this scenario. Fighting, battling, overcoming, conquering, defeating -- them's fightin' words, and you can't fight the undefeatable. We need a new vocabulary, one that acknowledges the very different nature of an incurable chronic illness.
grace
steadfastness
cheerfulness
flexibility
endurance
strength
acceptance
It's such a different world. Through inspirational stories, we learn that refusing to accept limits is the way to beat an illness. Powering through and maintaining your pre-illness life shows strength and determination. That willpower and hope can beat a terminal diagnosis. Chronic illness doesn't speak this language. Refusing to accept limits results in more pain, more time lost, a longer recovery back to the New Normal. Powering through in an attempt to maintain your previous life does the same thing. Willpower and hope keep you from shortening your own lifespan in an effort to escape the pain but they don't change your diagnosis.
It isn't giving up to accept your new limitations. Acceptance is sanity. Acceptance means not beating your head against the wall. In a Head Vs. Wall battle, the wall will win. The win condition is: Not engaging in that battle in the first place. It takes strength and grace to face down the decades of pain in front of you and accept that you can still have a fulfilling life even with chronic pain factored in. It takes endurance and steadfastness to deal with the pain. Cheerfulness lifts you up, and lifts the spirits of the people around you who want to help you and can't. It's hard to be the one with a chronic illness. But it's also painfully hard to love someone with a chronic illness, to know that you can't slay that dragon for them. And flexibility is not to be underrated. It takes real flexibility to handle the essential unpredictability that a chronic illness brings to your life. When you can't predict if you'll be able to think clearly, move easily, eat without unfortunate consequences, drive, lift, balance, interact, it's difficult to hold down a job, volunteer, make a social commitment, promise your kids anything. Incorporating true flexibility into your mindset will allow you to take advantage of the good moments to their fullest without promising things you can't deliver.
Chronic illness has its own language. My battle isn't beating my illness. It's learning my new language.
Tuesday, November 15, 2011
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