You Might Have ME/CFS if…

make-me-laughHere’s my take on Foxworthy’s Redneck skit for ME/CFS:

  • You’ve had enough well meaning advice from healthy people to last you two lifetimes
  • Your commute for dinner and a show is from your bed to your recliner
  • You spend 23 hours a day in bed and only 6 asleep
  • You spend 23 hours a day in bed and only 6 awake
  • Most of your closest friends have never seen you IRL
  • You grow so many fungal infections your doctor suspects you’re moonlighting as a tree
  • Your most effective meds are supplements you learned about from other #spoonies
  • Your doctor’s MA cracks Walking Dead jokes every time she takes your vitals
  • You’re on a first name basis with your lab’s phlebotomists
  • You wish your hospital/doctor’s network had a rewards program
  • You buy your supplements in bulk
  • You can judge the weather without ever looking out a window
  • You know how cells produce energy, but you can’t remember that idea you just… had
  • You spend a large portion of life like a mushroom; inhabiting dark, cool spaces
  • You manage your energy expenditures like stocks; calculating the risks and rewards
  • Installing a refrigerated water tap next to the bed is your next DIY project
  • Trips to the amusement park are like treks through the Mohave
  • Trips to the mall are like treks through the Mohave
  • Trips to the living room are like treks through the Mohave
  • Or on rarest occasion, springtime in France.

By Capricious Lestrange © 2016.

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Sign the Petition: Misleading PACE claims should be retracted

A new petition from our friends at MEAction.org demanding retraction of the falsified trials that name GET and CBT as effective therapies for CFS:

To: THE LANCET, PSYCHOLOGICAL MEDICINE, AND THE AUTHORS OF THE PACE TRIAL

Given the weak and flawed methodologies of the PACE trial, which claims that CBT (cognitive behavioral therapy) and GET (graded exercise) led to the recovery of ME/CFS patients, we, the undersigned patients, doctors, scientists, parents, children, family, friends, caretakers and #MEAllies:

– call upon The Lancet to retract the claim made in its February 2011 editorial [1] that 30% of patients, or indeed any patients at all, were said to have recovered in the accompanying Lancet paper on the PACE trial [2]; and retract from that paper all analyses and statements in relation to the absurd “normal ranges” for fatigue and physical function;
http://www.meaction.net/whats-wrong-in-the-lancet

– call upon Psychological Medicine to retract the claims in this paper [3] that 22% of patients in the CBT and GET groups recovered, based on recovery criteria that were weakened so far from their original form in the study protocol that they no longer represent recovery by any rational standard;
http://www.meaction.net/whats-wrong-in-psychological-medicine

– call upon the study authors to publish the recovery outcomes according to the analyses specified in the trial’s protocol [4] and to give independent researchers full access to the raw data (anonymised by removing trial identifiers and all other data superfluous to the calculation, such as age, sex or location). #MEAction undertakes to meet any reasonable cost of analysis or data preparation;​
http://www.meaction.net/why-the-pace-trial-authors-should-publish-the-planned-recovery-analyses/

– call upon all parties to reject the view that being as disabled as patients with congestive heart failure is a good recovery of physical function in CFS.

To sign the petition go to: Misleading PACE claims should be retracted | #MEAction.

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October 31, 2015 · 7:08 pm

Motherless Day

I imagine childbirth to be another memory hidden away in an avalanche of ruined messages somewhere along the synaptic highway of my dementia, the red and squalling life lost with it. Her tiny body wrinkled, covered in hair as a tiny caterpillar, legs and arms aflutter with their first taste of cold freedom, her terror shrill and demanding from purple lips; PUT ME BACK. She is wise in this demand, enfant terrible. I’d put her back too, save her from the despair of life we all must know; the trade off for our existence. I realize too late I do not have the strength to save her. The only way to save her is for her to not exist. In causing myself the greatest joy, I have caused her the susceptibility of existence. I love her already though, loved her years before she even came into existence, and I would not change a thing.

This is how I imagine it, anyway. If ever there were a babe, I don’t know it. I wish there were a babe. It was ever my desire, my deepest secret, to have a child of my own to spoil with such love and affection as I always dreamed for myself. But early on, fear kept me from creating such a being and by the time I gave way to desire over fear, my biology would not cooperate. Perhaps my body was smarter than I, even as it began its descent into the darkness where now it holds me trapped between the horror of fantasy and the terror of the reality that I am forced to live.

Any child of mine would surely be damned. I don’t mean this in a biblical sense, for surely I would have to believe in the bible and the tenants and superstitions therein. No such fiction is required for my world. Truth is plenty horrific enough without such lore. No, the problems are very real and grounded in science and so many I hesitate to put too great an emphasis on any one. I suppose some of it comes down to the age old debate of nature versus nurture; how much of the family curse is attributable to genes and how much to generations of bad parentage? Add in generations of alcohol abuse and more than a few nasty diseases of a hereditary nature that even the most lackadaisical would be leery of producing progeny. Then add a heaping helping of dementia beginning in the late thirties and damned my child surely would be just for having to live with me. I should feel grateful.

I don’t. I want that squalling red caterpillar brought kicking and screaming into the world against her will. I want the opportunity to ruin her just as my own mother ruined me. I want to roll the dice against all odds and hope she will have all that I never did and that it will in large part be because of me rather than in spite of me. After all, all those years of therapy weren’t just for me. All that education and work to make something of myself wasn’t just for me. The house in a good school district with a big backyard and finished basement where she could play on rainy days weren’t just for me.

Even at 42 and broken as I am, I cry for the want of her, her tiny arms and legs wrapped around my torso, her big head resting on a shoulder as I coo to her and rock her. Her little finger trying to follow the words I read from her favorite book about an alligator who can’t pronounce the letter ‘A’. Her tiny legs running as she tries to catch bubbles from our favorite bubble gun. It is not youth I dream of on these early spring days, but being the witness of hers, the guardian of her innocence, her educator, her mother; the center of her world.

We bought that perfect house in that perfect school district in that perfect little suburb and instead of having her I got a neuro-immune disorder. Instead of being eligible for adoption or even foster parenting for that matter I became eligible for disability. Instead of bringing her into my heart and drawing her to my bosom, I drew in all the pain and disappointment of a life interrupted but unlikely to end in any untimely fashion, just me and my damnably vivid imagination of what might have been. Gone is the home with all the hope. Gone all the things I thought one day Mother’s day would come to mean.

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The Modern Prometheus

Wounds do not suppurate without end, even the emotional ones. It’s those we insist on picking that will not close. I your Prometheus, meant to suffer your torture day in and day out, all for the crime of being your daughter, the folly of championing a better way of life. I have news for you; you’re no Zeus and I’m no Titan. I’ve broken your chains and I’m leaving this mountain. I may be the monster you created, but my ending will be a design my own.

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Letter to a Long Ago Lover Revisted

Sometimes I wonder how you feel
about the children I love. Do you
resent their small perfect bodies doubling
the rhythm of my older less passionate heart
gaining comfort from bottles beside warm breasts big
round and supple as Gaia’s once so firm
in your mouth? You have a battalion of your own
named for presidents, upright citizens who color
for country and god and mother and church.

Is it enough? Was the ready made mother you got
better than the one whose will you tried to break
that day so many years ago when you tried to lasso
my finger with your patriarchy though you lacked
that one crucial element? Do you revel in the irony
that motherhood is a desire that taunts me
the punch line I’ll never get?
That those children I love belong to others and always
will, though ultimately I married both exclamation and point?

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Seeing Carol

Words have strength, power. You; the mere paper that holds them up, the fragile thing you really are, so very separate from your weapon of choice. I didn’t expect to pierce your pride with an apology, a long overdue explanation of my fall in your eyes. I miscalculated the thickness of your armor. I made it past your defenses, unwittingly cut you like paper dolls. You retreated into your house of cards, and lobbed your retaliation; you don’t beat up on the disadvantaged. And just to prove it, you picked up your weapon of choice to prepare a very polite retort, all the while hoping the girl with cognitive dysfunction wouldn’t see through it. But I’m not so far gone. I know just how cruel you are. Finally I see you.

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Expectations

I wish I had a mother like hers
who told her everyday she was sharp
as grandma’s tongue and quick as John
Wayne’s Trigger finger. She was something special.
No question, she was going to college.

I wish I had a mother like hers
who encouraged her to take harder classes,
never fear math, or science, or French,
she could pirouette to the stars;
fly a plane, be a scientist.

I wish I had a mother like hers
who bought her all she needed for extra-
curriculars like band or Ms. Teen
Ohio, though I was the pretty one.

I wish I had a mother like hers,
after all, we inhabited the same womb,
shared all the same chromosomes. But I was seen
as something else; I was the pretty one.

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Holding on and Letting go

With the first signs of trouble, you drifted in with the high tide on your brightly colored boogie boards, left me drowning in ocean swill of sickness, anger, self loathing. You mistook my S-O-S for ransom note, deemed the price too dear. Now I tread these dangerous waters alone, no raft to rest my weary bones. How much easier it seemed on the other side, this letting go. If only I a bullet for my rusty gun.

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Shrinking Violet

At what point did you decide I’m unworthy of seeking out?
You decided I’m unworthy of seeking out.
I’m unworthy of being sought out.
I’m unworthy.

This death is politic, the foreign cousin giving up your guest room. It’s the freedom of a morning cup in tattered chenille, the unrestrained burp. No apology required. The pleasure of absence, gift enough.

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Love Sickness

The sicker she became, the longer her hair grew; mythology in reverse. She grew plump, but pale, beached in weak rays on our denied marriage bed. This is how she looked when love crept over the line. This is how she looked as doe eyed baby dreams sunk into sallow skinned soliloquies punctuated with self-loathing, innumerable grains of endless pity; hers and mine. This is how I remember her now, when I think of the lover I hate, which means I love her still, in a brokenhearted tragic sort of way I rarely admit to myself— though love found me, high tide dragging me to out through salvation bay. I drown in the oceans of his love and yet, and still, I sometimes peer off to her far away shore.

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