silentk: (pomegranate)
“…if you’ve been up all night and cried till you have no more tears left in you - you will know that there comes in the end a sort of quietness. you feel as if nothing is ever going to happen again.”

- C.S. Lewis
silentk: (pomegranate)
Haiku: I do want to sleep / but I cannot do it right / please do not blame me.
silentk: (pomegranate)
would rather be playing my new favorite game -- 'hide and sleep.'
silentk: (childhood on the beach)
happy(?) i get at least one dr apt a year where the results are nominally normal. Now off for more bloodwork.
silentk: (pomegranate)
i identify with this quote far too much. since accepting that i will have to live the rest of my life with chronic illness as a constant companion, i feel even moreso like there is so much i haven't gotten done. there are half-finished and un-started projects surrounding me in my home and my studio, and every time i see them, they frustrate me.

i used to be a woman on a mission. i got things done, juggling multiple projects with relative ease, and was always able to recall the smallest details from conversations at need. now, it takes me so long to get a single thing checked off of my to do list that i've considered giving up my lists entirely. but then i'd just never get anything done. it's hard not to just sink into a wallow of despair.

yesterday i set a list of eight things to accomplish. so far, i've accomplished four, and swapped out a fifth item for starting some laundry once the washer is free, as i'm running low on clean underwear. if that counts, i've accomplished five things today.

but instead of celebrating the fact that i accomplished those five things, i am embarassed by those three things i did not. i am afraid that you will judge me for being unable to complete eight very simple tasks that you probably do without a second thought, every single day.

in all honesty, though, it's my inner critic comparing my current self with my past self. my rational brain knows that this is not a fair comparison, as i'm a different person today than i was five or ten years ago. the healthiest thing for me to do is to just recognize this, accept it, and let it go, but i can't.
silentk: (pomegranate)
"Many symptoms of these illnesses are invisible to the casual observer. We aren’t all in wheelchairs or use canes, nor do we all share the same obvious symptoms. We often appear to be the very picture of health.

"In many ways, that’s a good thing. Who doesn’t want to look healthy, strong, and vital? In fact, some of us go to great lengths to achieve that healthy look. But the invisible symptoms of our conditions can also cause misunderstanding and lead to emotional stress.

"[For instance,] some of the most common complaints of people with M.S. are fatigue, numbness, and weakness– things that cannot be seen and often cannot be understood by those who have not experienced them at high levels. These seemingly benign symptoms can necessitate missing work, school, or social obligations, causing chores to pile up and misunderstandings to arise.

"That’s enough to contend with, but what if your family, friends, and co-workers don’t really believe you? What if they think you are faking, or taking advantage of your diagnosis?

"“But you look so good” is the phrase that in most circles is taken as a compliment, but people who live with invisible illness often view it as having a double meaning. We may be inclined to wonder if the real meaning was, “you look fine — there’s obviously nothing wrong with you, so why are you faking it?”

"That kind of emotional mind game can take a heavy toll and even leave us to question ourselves. It’s not difficult to fall into that trap. In the long run, we are limited by how much we can change someone else’s thinking, but eventually, we’ve got to make peace with ourselves.

"We can do our best to educate those closest to us, to help them understand invisible illness. But at some point we’ve also got to stop evaluating ourselves based on what others choose to believe. Not everyone will get it, and we cannot allow that to affect our own self-worth.

"If we put in the effort to look good, perhaps it’s best to accept the compliment and not concern ourselves with any hidden — or not so hidden — meanings. Ultimately, we live with our own truth."
silentk: (childhood on the beach)
Do i get a geek cred bonus if my brain started composing techno music to the pulse of the gantry during my mri this afternoon?
silentk: (pomegranate)
i'm your price of admission.

choices.

Apr. 16th, 2009 10:50 am
silentk: (childhood on the beach)
i wish i didn't have to choose between functioning and feeling.

quoted.

Mar. 16th, 2009 08:22 pm
silentk: (light at the end of the tunnel)
"A good laboratory report is cold comfort to a patient whose symptoms remain unchanged, and the doctor can repeat such reports until he is blue in the face, but they will not help his patient much if unaccompanied by controlled symptoms and changed feelings."

-- Henry R. Harrower, MD, 1931.

finally.

Nov. 5th, 2008 01:39 pm
silentk: (pomegranate)
Fibromyalgia a ‘Real Disease,’ Study Shows
Researchers Say People With Fibromyalgia Have Abnormalities of Blood Flow in the Brain

By Caroline Wilbert
WebMD Health News
Reviewed by Louise Chang, MD

Nov. 3, 2008 -- A new brain scan study concludes that fibromyalgia is related to abnormalities of blood flow in the brain.

"Fibromyalgia may be related to a global dysfunction of cerebral pain-processing," study author Eric Guedj, MD, of Centre Hospitalo-Universitaire de la Timone, in Marseille, France, says in a news release. "This study demonstrates that these patients exhibit modifications of brain perfusion not found in healthy subjects and reinforces the idea that fibromyalgia is a 'real disease/disorder.'"

read more.

*sighs*

Oct. 30th, 2008 06:03 am
silentk: (Default)
...aaaaaand...still awake.

grr.

Oct. 30th, 2008 04:11 am
silentk: (Default)
still.

awake.

bleargh.

Oct. 10th, 2008 08:05 pm
silentk: (pomegranate)
most of today was spent being violently ill or asleep. i hate flaring like this, because i know it's not something that will ultimately pass.

when you're dealing with some level of excruciating pain day in and day out, it makes it so hard to feel other things. i miss being able to feel other things.
silentk: (childhood on the beach)
"CFS is a multi-system disease which causes extreme fatigue, muscle weakness, cognitive dysfunction, hypersensitivity, orthostatic intolerance, digestive disturbances, depression, poor immune response, and cardiac and respiratory problems.

According to the CDC, studies show that disability in CFIDS patients is comparable to multiple sclerosis, AIDS, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, and chronic obstructive pulmonary disease.

Yet, studies have shown that patients diagnosed with “Chronic Fatigue Syndrome” are not taken as seriously as patients with the same symptoms but a different name for their diagnosis. Thus, the name CFS not only affects the quality of treatment patients receive, but the amount of money committed to research!"


-- blogger Catherine Morgan, about "Campaign for a Fair Name"

Imagine calling parkinson's disease "chronic shakiness" or Alzheimer's "chronic forgetfulness" and you might begin to understand how trivialized I feel on a daily basis.

aargh.

Aug. 4th, 2008 07:57 pm
silentk: (pomegranate)
i fucking hate panic attacks.
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