Advocacy, Education, Expression
About and/or by People With
Chronic Fatigue Syndrome (CFS / CFIDS / M.E.)
Fibromyalgia Syndrome (FM / FMS)
MVPS/D and Similar Syndromes
Sarah's New Routine
A New Routine
I tell my Honey I'm working on a stand-up routine about CFS, and he
goes, "Don't you mean sit-down routine? Why not a lie-down routine?"
So I say, "Very funny, now bring me some more water. It's almost noon and I've only had three liters today."
seriously, folks, it's not easy having CFS. There's so many ways you
can screw up - do too much, do too little, eat the wrong foods, get too
hot or too cold and you'll be sorry. Why, the other day I got in
trouble for resisting a rest! (Badum-pssh)
No, it's not so bad.
Actually, I'm pretty lucky to have CFS. Yeah, think about it: no boring
meetings, no long commute, every day a vacation day, and you know that
wonderful feeling you have after you've been working out or shovelling
snow for a couple of hours? That feeling when you're so tired you just
FLOP down on your bed and your muscles go "THANK YOU THANK YOU THANK
YOU!" Well, I can have that any time I want, just by unloading the
In fact, I'm getting so good at resting now that I'm
thinking of going professional. Yeah, I'm getting ready to join the
World Resting Federation. Picture it: Me, a pro rester. I'll be in my
pajamas, with my blankie for a cape, and they'll call me The
Somnambulator. Every time I defeat an opponent I'll get this serious
look on my face and say, "Rest in peace."
Thank you! Thank you
very much! You all have been a great audience! All in good fun, right?
Gratitude to Bob T and Turtle Barb for some great jokes. Love you guys!
September 30, 2010
ME/CFS Advocacy Cartoons & Articles
Uncle Sam, blowing past a CFSAC Meeting
"Not now, I'm too busy to deal with
For the ME/CFS Advocate
'A Stress Disorder'
"My doctor says it's okay to walk on a bad therapist.
I thought about stomping on him, too, so instead, I found a better one."
- Elly, 2007
Fourth Chakra Force Fields
August 23-26, 2004
My gut guides my knowing my heart sealed by force field,
By intuition, fullness, and feelings still concealed.
As intellect’s completing its new interpretations,
Still feeling some liver, heart, and stomach stagnations.
Life had absence and confusion when small,
When fourth chakra’s corner posts I did install.
I built the fences when I couldn’t cope,
Getting ever more tired, no radio, soap.
This many years later, I’ve learned lessons intended.
Oh my God, am I finished pretendin’?
Fence around heart is now in my way,
While it helped me survive, it can no longer stay.
The timing was right, the teacher appeared.
Knew him instantly and then I disappeared,
Into wild gyrations and physical sensations,
Familiar and hinting and haunting vibrations.
Powder or juice, I spoke an excuse.
Symptoms broke loose, is it 'erbal abuse?
But doc is a genius, knows craft north to south.
Someday I’ll talk with him, no foot in my mouth.
Each time I was seen, I regressed even younger.
Hating it, trusting it, perpetually in wonder.
I drank custom formulas, floating suspensions.
Moving off-balance, feeling my tensions.
First in the gut, but there almost done.
Shoulders to ribs, should have begun.
I’ll remember forever, the moment was busted.
Showing exactly where my thinking was rusted.
Three weeks later, after revising and revealing,
My heart still sounds like a bass drum is pealing.
I want heart to beat, beat very proud.
I just need relief from it being so loud.
Continuous thuds in chamber steel plated,
The song I can’t or won’t get translated.
At least, said doc, if you can’t make a break,
“we’ll reassess” which did me placate.
Snorkel, doc said, get in your crap.
You’re doing well, keep going; his sturdy recap.
I focused anew, inviting dissolution.
Through pounding and prayer, sans herbal solution.
High serving a ball labeled with past transgressions,
Did nothing to access my stifled aggressions.
Poe’s Tell Tale Heart has always bothered me.
The Headless Horseman I also do flee.
I now truly see, I can easily admit.
My Mind and Heart have been living same split.
These force fields make symptoms, their messages I collected.
The meanings of which, are now being corrected.
Hands off, don’t touch my really tense ribs.
How did I stop the atrial fibs?
With a cute little cough,
And hope the shoulder tightness won’t pinch my head off.
Stiff shoulders I’d beg all not to rub,
They didn’t get it, they took as a snub.
I can’t get good breath, especially in hot tub.
Its been that way since I was a cub.
Palpitations in rest and in motion do drum,
Now incessant, insistent, soon to succumb.
Heart rate too high, resting is 80.
When it stays at 120, it gets kinda weighty.
Chest pain has plagued me, left side and right,
Worsening with too much exercise or fright.
Broken blood vessels wander over my chest,
Mapping where chi not flowing its best.
I’m wound pretty tight, I’m nervous and flighty,
I’d given away power, closed door to almighty.
Up past my bedtime? It did really matter.
I became giddy and endlessly spued chatter.
In arms and legs I got frequent numbness.
Got good at faking I didn’t have dumbness.
Anger I dealt with only from head,
It didn’t go lower, which sent me to bed.
The four major ‘lytes near zero do lie,
Leading to cramps, tics, and spasms, oh my.
Calcium’s not absorped when feelings held in,
Keeping me awake to experience chagrin.
Tears drip easily, as does nose full of snot,
But no sobbing comes, a release it is not.
Tilt tests and standing can provoke me to cry,
start tachycardia, and run my blood dry.
My CFS graduation some may defy,
To that and those I must say good-bye.
Overrated has been the importance of sleep.
More awake time needed for these deep thoughts to creep.
Matter, such as blood, can move through mostly as pleases,
But energy gets stuck, and that mimics diseases.
My muse is available, but my music is thin.
That I listen to some, is a small win.
Deep air is scarce, it just doesn’t fit in.
The balance is off, do I have too much yin?
Singing & playing still give me the blues.
There is little air, I now get the clues.
Breathing from diaphragm was always so freaky.
It should have helped, but made me more squeaky.
My current wind instrument, is the telephone.
When lungs’ cuffs unlocked, I’ll fill up a saxophone.
Speaking of jazz,
I must mention RazzmaTazz.
She copied dysfunction.
We stay in conjunction.
She’s been my companion, my comfort, and arm exercise,
I look forward to both our conditions’ demise.
Medicine Buddha, Spirit Mothers, all healers and herb gnomes.
Come so I don’t have to hear my loud inner metronome.
Saint John of God, mender of broken hearts,
Come and we’ll restore a whole from divided parts.
Prayer always works, if asking is specific.
For the highest good, I rescind prayer to be just pacific.
Little access to heart, was denial’s last veil.
It came down last Sunday, so my whole can prevail.
Let out my anger, my fear, and my grief.
I ask now to feel it, toward bigger relief.
New info from body came in very handy,
Symbolic meanings of which with self I did bandy.
My left, right, and third eyes, made pain their selection,
To get me to look in a brand new direction.
Half a headache said contrast issues female and male,
connect them and then move forward full-scale.
Reaching toward heart is a grasp for the feminine.
I welcome her out, my inner heroine.
Her nurturing, passivity, emotion and love.
type lefty, think righty and seek peace of dove.
Thank God for Sm, in this extra long ditty.
He’s here to protect me from therapists’ stupidity.
They expose the wounds and find the wrong fault,
rarely show skill, just pour in more salt.
Setting me back, I just couldn’t bear,
Thank God for Sm, who handles with care.
Help counselor Sm, master sweet Jees,
Give him words for me, whisper in Lebonese.
Then fill us with love and connect me to Divine,
I’ll know I am there ‘cause I’ll be drinking my twin’s white wine.
My relationships will deepen, my marriage will blossom,
I’ll less likely wig out when spouse brings home a ‘possum.
Before I do that, comes an adrenal potion.
Until a sudden pop, causing a happy commotion.
While waiting, I’ll swim in the vast new ocean,
of chakra 8 archetypes, and deeper emotion.
I’m hesitant to begin, even really slow.
Chi through my middle does not evenly flow.
I might once again get beat up from within,
As soon as I drink some FM juice in.
One side of me says drink up and sense,
Where it is the chi hits the fence.
Notice new signs, tell doc the clues,
To see if there is a formula to choose.
It seems like I know, have I seen this edition?
Elly’s got yet, sigh, another condition?
Still wanting progress, I dove in the pool.
Found some more plays, where I acted the fool.
Figure out how, these wounds influence life.
Keep working to be, set free from the strife.
I wrote this long poem to open my heart.
Revising and rhyming my story a start.
My head is hurting, with intermitant pain.
My heart is still pounding, is it really a gain?
My gut is still bearing way too much.
What will be the next special touch?
Affinity, was where found next reading apropos.
Tracing issues fore birth, progress I did undergo.
The force fields have lost much of their power.
To dark forces and fear I no longer cower.
A witness, a guide by profession,
To Sm I go for 5th chakra confession.
After express what I’ve learned, it calls even more forth.
Popping up like a Pez, to work with my 4th.
For this long time, I had to be dense.
Now its better that things make more sense.
Implications for big picture are very immense,
Not ready think about it, it is too soon, too intense.
Leading a group provides a great twist.
I get verbal jabs that I should desist.
Mine is so special, this is very galling,
Don’t you see I’ve been prepared for my calling?
When I am well, by the end of some year.
I shall answer this challenge with a heart sincere.
I’ll charge for some time and some I’ll volunteer,
I’m meant to stay on the “Help People with CFS” frontier.
When I have made it, chi will flow unimpeded,
Because of what I slowly, stubbornly conceded.
The race will be on for first to be voicing,
A favorite quote about much rejoicing.
This morning I feel a new peace, I relax.
Needy me doesn’t have to write, call, or fax.
I’ll keep going, I am afraid of no wraith.
Healing is coming, I must keep the faith!
CFS/FMS Support Group & CFSupport are informal support
website led by volunteers. Group leaders Elly and Toni have the
experience of chronic illness and are not medical, counseling, or legal
professionals. Please seek out qualified physicians and other Practitioners for
diagnosis, treatment, and legal advice. Thank you.