Uhhh… what day is it?

Oh, yeah, Thursday.  Last Thursday, I went to Wasilla, so I don’t
have to do that again until next Thursday.  Today, though, I need
to go to Willow.  The library has a book I requested that’s
supposed to help me over the last  hurdles toward mastery of CSS,
and the post office is in possession of the VisiBone book I ordered
with all the colors and tags and goodies I’ll ever need, until W3C
changes the rules again.  XHTML, here I come!  Now, do I go
“strict” or “transitional”?

Greyfox reminded me that the best is the enemy of the good.  He
reminds me of that frequently, just can’t accept that I have this Virgo
handicap and MUST do the best I can, unless of course I can’t.

Speaking of “can’t,” yesterday Doug and I worked an hour or two in the
little storage cabin, cleaning and rearranging so I can get more of the
clutter out of here.  Finally, on the third try at that job, I can
see some results.  But, still the clutter remains in here.  I
crashed again, into the damned ME/CFIDS wall.  I could barely move
yesterday afternoon, for the stiffness and incoordination, not to
mention the goddamn pain.

But that was then and this is now.  Now, my head is stuffed with
fluff and surrounded in fog.  Driving to town is a priority, and
in my present condition probably a foolhardy act.  This morning
I’m not quite as depressed over my disability as I was yesterday. 
It’s hell not being able to do what I have to do:  I HAVE
TO!  But I CAN’T!  I just can’t, but I MUST!. 
Shit! 

Yesterday, briefly, I was feeling suicidal, but that passed.  I
talked myself out of it.  I may not be able to do much, but there
is still so much to SEE, to experience and find out about.  And
the world’s not as crazy as it seemed to be just recently.  Recent
polls show that FINALLY a majority of Americans understand that the
Iraq war was a mistake.  Now there’s
something to celebrate.  I wonder how many in the west wing
understand that — probably a lot more than would admit it out loud.

I’m gonna finish my coffee, get into my stash of ephedra, and after
that if I feel capable, I’ll head on down the valley to Willow. 
When I get back, if Doug will relinquish the comp, I’ll get back to
work on AuWay.org.  It’ll feel so GOOD, if I can just get one page
up as a start.  But which page to start with?  Aaaargh! 
Oh, to be a decisive Libra or Gemini, instead of such an air-headed
Virgo!

This is the best part of ME/CFIDS.

Flareups go away.  I woke this morning feeling like working, for
the first time since my town trip last Thursday.  This means that
if I pace myself and nothing happens to trigger another flare, I will
be productive through the next town trip eight days from now.

I have been working on the Addicts Unlimited website.  I have been
fiddling with the color scheme.  That could occupy me forever if I
don’t just make a decision and get on with it.

There was something else I had meant to mention in yesterday’s blog about the reassurance I got from the ultra-comprehensive symptom list. 
It confirmed for me what I had observed in myself:  that not just
physical activity, but also mental work, can “wear me out” and trigger
crashes.  This explains so much, particularly why I have gravitated towards certain non-demanding games and pastimes.

Doug doesn’t see how I can enjoy replaying some games after they have
lost their challenge through practice and familiarity.  In truth,
when I’m in tip-top form, they have no attaction for me, either. 
But when the M.E. is particularly severe and my brain is in a fog, such
pastimes are preferable to sitting and staring at a wall or, even
worse, at TV.

I have been doing mental work since early  morning and it’s time
for a break and some food.  I hope to get some physical work done
this afternoon.  It’s hard to express how good it feels to be
getting any work done after the days and daze of stumbling and fumbling.

Later….

OMG… don’t look!

I’ve not only got bedhead, I’ve got pillowface.

I’ve mentioned that Koji spends most nights curled up by my feet. 
Or, at least that’s the way he begins the nights.  Often I wake to
find him stretched out beside me with his snoot in my face.

This morning it wasn’t just Koji and me.  Fat old Muffin was curled up on the other side of the bed, too. 
I was still half asleep, but  I thought it was worth documenting,
so I got Doug’s attention and he came with the camera.

The commotion disturbed Koji, so he moved up and curled up on Muffin’s
pillow, crowding her over against the wall..  As Muff was getting
ready to leave in a huff, little orange Nemo decided she wanted to be
where all the action was.  The next move was me shoving Koji off
the covers so I could get up.

---

Yesterday’s blog with the ME/CFIDS symptomlist
turned out to be very beneficial to me.  I wasn’t in any shape
yesterday to read the whole thing.  I just skimmed it, then read
it fully this morning.  I got some reassurance from it, as well as
some further confirmation that I’ve had this disorder most of my life
even though I still haven’t been officially diagnosed by a real
MD.  My healthcare provider, a physician’s assistant, agreed with
my self-diagnosis after I took her an armful of stuff to read, but she
is still calling it “fibromyalgia” because that’s listed on her little
checklist and ME/CFIDS isn’t.  Damn CDC and NIH, anyway!

The reassurance I derived from it was from finding several symptoms
that I have, which I hadn’t known were associated with the same old
familiar syndrome.  It is oddly reassuring to know that I’m
afflicted (I like that word, Mike,
thanks.  Too many of my fellow-afflictees call themselves
“sufferers” and too many other sources call us “victims.”) not with
several different and new disorders, but just the same old one I’ve had
most if not all of my life.  I’m also inclined to take some
consolation from the thought that one doctor’s long-ago diagnosis of
lupus might have been wrong and that I’m not simply in remission from
that, waiting for it to kick in again and kill me.  With a pack of
dogs chasing you, there is some comfort in thinking at least it’s not a
wolf.

Where I found the latest bit of support for my theory that it has been
undiagnosed and misdiagnosed through my whole life was largely just in
that many of those symptoms have been present as long as I can
remember.  But one thing in particular that came as news to me was
the part where it said that in the early stages we tend to sleep more
than is normal, and then later on to have insomnia.  That
fits. 

I slept through the late nineteen-fifties and early ‘sixties.  As
a child, I had needed more sleep than most kids and was very hard to
awaken unless I’d gotten 11 or 12 hours of sleep.  I never got
that kind of sleep on school days because my parents couldn’t get me to
bed before seven PM.  I declared it unfair, when my friends had
bedtimes of 9:00.  When not in school, I’d be up late and sleep
most of the day. 

Later, when I worked at regular jobs, I preferred night shifts. 
I’d sleep from around 2 or 3 AM to 3 or 4 PM except when I was holding
down two jobs.  Then I’d use three alarm clocks and a clock radio
to get me up, and I’d sleep on my days off.  In the 1970s, when I
started sleeping a lot less, it was like I’d been given more life
time.  I took to insomnia like a kid to candy.  There was so
much to do, and so little time, not sleeping felt like a blessing until
the zombie-like effects of sleep deprivation kicked in in the late
1980s.  Now, I usually awaken several times, but I try to go back
to sleep and get a total of at least six hours before I crawl out of
bed.  That diminishes the symptoms some.

---

 Okay, dingus6 wanted the
Tallulah story.  I wish I could tell it in her voice and from her
memories.  I remember Tallulah from radio when I was a kid. 
Her voice was husky and sultry and her laugh so suggestive it sent
chills up my spine.  She was, to me then, the ultimate
sophisticate.

Augustus
John, the painter, was a fairly interesting character, too.  He’d
gone to art school but his work was neither distinguished nor
successful until after a diving accident in which he received a head
injury.

That changed his life and his personality.  He did some traveling,
grew a beard and changed his style as an artist.  He went from
reserved to flamboyant.

I don’t recall where I found this photo of Tallulah with John, but it
intrigued me and still does.  He looks like a wild man, and she
seems uncharacteristically subdued, even maybe intimidated by
him.  I would love to have been a fly on the wall during her
sittings, as he painted her.

The
time was 1930 and Tallulah was a stage actress in her late
twenties.  Later in her life, this portrait was said to have been
her most prized possession.  It now resides in the Smithsonian’s National Portrait Gallery .

For more pictures of Tallulah, plus memorable quotes and more, visit this fansite .
 

Someone recently accused LuckyStars of being a whiner.  She replied that she doesn’t whine, she bitches.

I bitch, and I whine, and I cry.  That’s not all I do.  In my
emotional repertoire are also crowing and exulting and a wide range of
other expressive sounds and bits of body language, some of which get
more use than others.

True, I do most of my emoting by myself, all alone.  That’s
because alone is how I spend most of my time… alone except for a dog,
some cats and a young adult male Leo with ADD who is very good at not
noticing what I’m saying or doing, even when I’m trying to get his
attention.  I don’t try to get his attention to bitch about how
I’m feeling, except when I’m feeling pissed off at him for
something.  He gets too upset about my illness when I cry over it,
so I don’t cry on his shoulder.  I developed the habit of not
burdening him with my troubles when he was a child, and it still seems
to be a sound idea.  He hears all my moans, groans, whimpers and
wheezes, and that’s enough.

Odd… it just occurred to me that out in public I tend to suppress the
non-verbal expressions of pain, while talking more about my
symptoms.  Sometimes when the symptoms aren’t too severe, I’ll
give the polite evasive answer to queries of, “How are you?”  That
works with Greyfox.  He’s usually only asking me how I am so that
when I’m done telling him he can tell me how he is.  I have
noticed that the evasive, “I’m okay,” does not work with my sponsees or
the clients from the rehab ranch whom I haul to NA meetings whenever
I’m up to making that drive into town.

If one of them asks me how I’m doing and I don’t give a responsive and
detailed answer, the question usually gets asked again by that client
or another one.  It’s kinda cute, in a way.  It shows not
only that they care, but that they’re not going to be blown off easily
with polite non-committal bullshit.  It shows me something else,
too.  It strongly suggests that on some of those occasions when
I’ve been too ill to make the trip into town, Greyfox or one of the
others who knows my situation has told them about my chronic
condition.  I feel vaguely uncomfortable, knowing that.

When my symptoms are severe, I’m not likely to encounter anyone on
whose shoulder I can cry.  On bad days, I stay home.  On the
very worst days, I don’t even blog.  Today is a medium-bad
day.  I had something (Augustus John and Tallulah Bankhead) about
which I wanted to blog, but I couldn’t keep it together well enough to
make any sense.  That’s when I decided to blog (again) about
ME/CFIDS.  But, really, I’m not quite up to doing this subject
justice, either.  Instead, since some minimal googling and
copy-and-paste is about all I’m up to, I’ll just post a symptom
list.  My source is at the end.

ULTRA-COMPREHENSIVE ME/CFIDS SYMPTOMS & SIGNS LIST

 



ME/CFIDS is a severe acquired systemic illness, it manifests symptoms predominately based on neurological, immunological and endocrinological dysfunction and occurs in both epidemic and sporadic forms. The severity of


symptoms varies unpredictably  from week to week, day to day, even hour to hour. Some symptoms can be extremely severe, and in rare instances ME/CFIDS can also be fatal.



Characteristics/signs of ME/CFIDS include: Physical as well as cognitive exertions exacerbate all other symptoms. Activity rhythms in the physical, cognitive and emotional realms are unpredictable. Significantly lower peak oxygen consumption. Low cardiac reactivity to cognitive stress. There is clinical evidence of immune system activation in the absence of viral exposure and/or associated with inappropriate events such as physical


exercise and stress. Severe and prolonged exacerbation of illness if activity limits are transgressed too deeply or too often.

CARDIAC & CARDIOVASCULAR SYMPTOMS

Sensations of chest pain, chest pressure or fluttering sensations in the mid-chest.

Light-headedness and/or syncope (fainting), lower than normal blood volume, low blood pressure – Hypotension

Reduced maximum heart rate and/or an elevated resting heart rate

Extreme pallor or edema (swelling of the hands and feet)

Neurally Mediated Hypotension  (NMH) low blood pressure which occurs when there is an abnormal reflex interaction between the heart and the brain) which can also occur with Delayed Postural Hypotension (usually delays are around 10 minutes or more)

Postural Orthostatic Tachycardia Syndrome – POTS (a heart rate increase of 30 bpm or more from the supine to the standing position within ten minutes or less) which can also occur with Delayed Postural Orthostatic Tachycardia Syndrome (usually delays are around 10 minutes or more)

Palpitations (skipped heart beats), tachycardia (rapid heart beat – up to 150bpm), premature atrial and ventricular contractions (early or extra heartbeats), various arrhythmias (abnormal heart rhythms) or ectopic heart beats (a contraction of the heart that occurs out of its normal rhythmic pattern, it may feel like a thumping sensation in the chest) can all occur

COGNITIVE & EMOTIONAL SYMPTOMS

Slowed retrieval of long term memories and difficulty making and consolidating memories (particularly short term memories)

Prosopagnosia – not being able to recognize faces, even those of close friends and family, (facial agnosia) and also a difficulty associating faces with names

Multitasking problems and an inability to learn to perform new tasks. (as well as forgetting how to perform routine tasks)

Volitional problems; difficulty starting or stopping tasks and/or cognitive slowing (tasks can take much longer than usual)

Impairment of concentration

Difficulty with visual and aural comprehension; Difficulty following oral or written directions, trouble distinguishing figure from ground and delayed speech comprehension. Greater difficulty with auditory than visual memory is common

Paraphasia – incorrect word selection, such as using the wrong word from the right category or using a word that sounds similar to the correct word but has a different meaning.

Word blindness – inability to recognize words.

Word, letter and short term ordering problems, for example; transposition - reversal of letters or numbers, or words when speaking or writing (pseudodyslexia)

Difficulty/inability to understand speech (Wernicke’s Aphasia). and/or an inability to express language ie.speak (Broca’s Aphasia). Difficulty pronouncing words intelligibly (Dysarthria)

Inability to locate the words for writing (Agraphia) and/or problems with reading (Alexia)

Loss of arithmetic skills, inability to do simple addition, count money etc.  (Dyscalculia)

Perceptual and sensory disturbances eg, spatial instability and disorientation and an inability to focus vision.

Altered time perception (losing time), feeling ‘spaced out’ or ‘cloudy’ or not quite real somehow.

Disorders of colour perception – recognizing colors but forgetting what they mean, at traffic lights for example

Hypersensitivity to noise and/or emotional overload.

An exaggerated response to even small amounts of additional input, incoming messages become scrambled or blurred resulting in distorted signals and odd sensations


Difficulty organizing, integrating, and evaluating information to form conclusions or make decisions

Personality changes – usually intensification of a previous tendency, mood swings (emotional lability) Crying easily, excessive irritability etc or intense emotions such as rage, terror, overwhelming grief, anxiety,


depression and guilt or sometimes, there can be emotional flattening or situations may be erronously interpreted as novel (due to prefrontal cortex dysfunctions)

Anxiety and panic attacks (often not tied to environmental triggers)

DIGESTIVE DISTURBANCES

Esophageal spasms (felt as extreme pain in the centre of the chest that sometimes radiates to the chest or mid-back)

Difficulty swallowing (or an inability to swallow altogether) or esophageal reflux (heartburn)

Great thirst and/or increased appetite and/or food cravings or lack of appetite

Inability to tolerate much fat in the diet (gallbladder problems)

Changes in taste and smell, an increased sense of smell or bizarre smells. Strange taste in mouth (bitter, metallic)

Multiple new food allergies and intolerances

Bloating, abdominal pain, nausea, indigestion or vomiting

Intense gallbladder pain (in the upper right quadrant of the abdomen) or liver pain, tenderness or discomfort. Liver problems can lead to a poisoned feeling, and alcohol intolerance is extremely common

Diarrhea, constipation or an alternation between the two.

ENDOCRINE & NEUROENDOCRINE DISTURBANCES

Thyroid pain, inflammation and/or dysfunction (usually secondary hypothyroidism) and/or adrenal gland dysfunction (aspects of both overactive and underactive adrenal function) and/or pituitary dysfunctions

Loss of thermostatic stability – subnormal body temperature and marked diurnal fluctuation (temperature fluctuation throughout the day) and/or poor temperature regulation – suddenly feeling cold in warm weather and/or recurrent feelings of feverishness and/or hot flashes particularly involving the upper body.

Sweating episodes (profuse sweating, sometimes even when cold) – with the sweat often having quite a sour smell

Cold hands and feet, sometimes on only one side

Swelling of the extremities or eyelids

Loss of adaptability and worsening of symptoms with stress

EXERCISE & STAMINA

A feeling of agitated exhaustion (feeling ‘tired but wired’) is common

A sudden unexpected feeling of being ‘high’ can occur (due to neurological malfunctions) leading to (usually short) bouts of physical hyperactivity

Impaired cognitive processing when engaged in challenging physical exertion and/or a reduced maximum heart rate and/or a drop in body temperature and/or dyspnea (shortness of breath) with exertion

Loss of the natural antidepressant effect of exercise

Severe muscle weakness – paresis (Note that problems arise from sustained muscle use, they may function normally to start with but pain and weakness develop after very short periods of use and often come on very suddenly) or paralysis

Post-exertional malaise, ‘fatigue’ or pain which is often delayed until 12 – 24 or even 48 hours after trivial exertion (compared to pre illness levels of activity), that can last for days, weeks or months afterward.

HEADACHES

Onset of a new type, severity or pattern of headaches is common;

These can be experienced as a feeling of extreme pressure felt at the base of the skull and/or severe pain or sensation of pressure behind the eyes (or ears). Sinus, pressure or tension headaches (dull continual headaches which are not actually caused by anxiety as the name may suggest) can occur, as


can hypoglycemia headaches (generalized prickly ache over the top of the head, sleepiness)

HEARING, VESTIBULAR & SPEECH PROBLEMS

Hyperacuity – an intolerance to normal sound volume and range, but particularly sounds in the higher frequencies. Sudden loud noises can also cause a startle response (flushing and a rapid heart beat) and there can also be an extreme intolerance to vibration.

Tinnitus – ringing, buzzing, humming, clicking, popping and squeaking noises generated in the ear

Hearing loss – sound can be muffled or indistinct or sound strangely flat

Sharp transient ear pain, deep itching in the ears and/or swelling of the nasal passages

Dizziness or Vertigo – a sensation that your surroundings (or you) are spinning wildly (can cause vomiting)

Acute profound ataxia (balance problems) and/or a sensitivity to motion/movement (which can affect balance)

Nystagmus – a rapid involuntary oscillation of the eyeballs (eyes rolling back in your head)

The voice may become very weak, hoarse or fall to a whisper, and then there can be total loss of speech

Slowed rate of speech, sometimes with stammering, stuttering, muddled or slurred speech

Difficulty moving the tongue to speak and/or difficulty getting enough air to speak more than a few words at a time

HYPOGLYCEMIA

Hypoglycemia or hypoglycemia-like symptoms (low blood sugar)

IMMUNE SYSTEM PROBLEMS

Painful/swollen lymph nodes especially on the neck, underarms and/or groin, particularly on the left side, and recurrent flu-like symptoms (general malaise, fever and chills, sweats, cough, night sweats, low grade fever, sore throat, feeling hot often and low body temperature)

Throat pain, scratchiness and tenderness which often worsens with exercise, exertion, or before relapses. Throat may feel clogged and require constant clearing. Throat may appear red or have characteristic ‘crimson crescents’ around the tonsillar membranes of the upper throat

Increased susceptibility to secondary infections or a decreased susceptibility to secondary infections. (There is a tendency to catch either every virus going around or none of them)

A worsening of existing allergies and/or new severe sensitivities/allergies/intolerances to airborne allergens: pollen mould, animal dander, fur and feathers, dust. Food. Chemical sensitivities: indoor and outdoor chemical air contaminants, drugs and medications, clothing and personal care products

Allergy symptoms:  Skin: pallor, itching, burning, tingling, flushing, warmth or coldness, sweating behind the neck, hives, blisters, blotches, red spots, pimples, dermatitis, eczema

Eyes: blurred vision, itching, pain, watering, eyelid twitching, redness of inner angle of lower lid, drooping or swollen eyelids

Ears: earache, recurring ear infections, dizziness, tinnitus, imbalance

Nose: nasal discharge or congestion, sneezing

Mouth: dry mouth, increased salivation, stinging tongue, itching palate, toothache

Throat: tickling or clearing, difficulty swallowing

Lungs: shortness of breath, air hunger, wheezing, cough, mucous or recurrent bronchial infections

Heart: pounding or skipped heartbeats, chest tightness

Gastrointestinal tract: burping, heartburn, indigestion, nausea, vomiting, abdominal pain, gas, cramping, diarrhea, constipation, mucus in stool; frequent, urgent or painful urination, bedwetting (in children)

Muscular system: muscle fatigue, weakness, pain, stiffness, soreness

Central nervous system: headache, migraine, vertigo, drowsiness, sluggishness, giddiness

Cognition: lack of concentration, feeling of ‘separateness’, forgetting words or names, anxiety, tension, panic, overactivity, restlessness, jitteriness, depression, PMS

JOINT PROBLEMS

Significant myalgia (pain) in joints is often widespread. The most common joints affected are knees, ankles, elbows, hips but pain in the fingers also occurs as does aching in the joints

Gelling (stiffness) in the joints that develops after holding a position for awhile, usually sitting or upon awakening or be caused by changes in temperature or humidity

Stiff slow gait (often with legs quite wide apart) Difficulty with tandem gait

MUSCLE PROBLEMS

Significant myalgia in muscles is often widespread (sharp, shooting, burning or aching pain)

Transient tingling, numbness and/or burning sensations (or other odd sensations) in the face or extremities (paresthisias).

There is sometimes atrophy of specific muscle groups (a shrinking in size visible to the eye)

Inability to form facial expressions leading to a ‘slack’ facial appearance and/or a loss of ability to chew/swallow

Paresis – severe muscle weakness (Note that problems arise from sustained muscle use, they may function normally to start with but pain and weakness develop after very short periods of use and often come on very suddenly) or paralysis

Tremors and twitches of the muscles (involuntary movements), muscle spasms, which can be extremely severe and painful or there may be spasms of the hands and feet, which can lead to ‘clawed’ deformities

Loss of co-ordination/clumsiness – difficulty in judging distance, placement and relative velocity (caused by proprioception disturbances, proprioception being the perception of stimuli relating to your own position, posture, equilibrium, or internal condition) Extension or quick rotation of the neck can cause dizziness (also due to proprioception disturbances) Slight hesitation in movement or ‘cogwheel’ effect with movements

Skin is very sensitive to the touch, there can be also be allodynia – a pain response to stimuli not usually painful and/or spontaneous bruising

ORAL PROBLEMS

Dental decay and periodontal disease (gum disease) are much more common than in the general population

Frequent canker sores (painful sores in the mouth which look like small bumps with white heads)

Loose teeth and endodontal (the soft tissue in the centre of the tooth) problems

Temperature sensitivity in the teeth and/or pain

REPRODUCTIVE SYMPTOMS

Menstrual cycles may become shorter, longer or irregular. Periods may also become lighter or disappear altogether (when illness is severe usually)

Intensification of ME/CFIDS symptoms before and during a period

Lowered libido

Impotence

RESPIRATORY SYMPTOMS

Erratic breathing pattern and/or episodic hyperventilation

Dyspnea  – air hunger, (often on waking or exertion), which can be severe

Persistent coughing and wheezing can occur

SEIZURES & SEIZURE ACTIVITY

Grand mal seizures (where there is loss of consciousness and motor disturbances), Petit Mal seizures – absence seizures (where you are conscious but unaware of your actions, a person may continue with an activity as though asleep) or Simple partial seizures (do not involve loss of consciousness but produce altered sensations, perception, mood or bodily sensation) can occur

Sensory storms/overload phenomena (hypersensitivity to light, sound, vibration, speed, odours and/or mixed sensory modalities)

Myoclonus (strong involuntary jerks of the arms, legs or entire body)

SKIN, HAIR & NAILS

Skin: extreme pallor, rashes, dry and peeling skin, acne, spontaneous bruising, fungal infections, butterfly rash on face, flushing of face, fingerpads may be atrophic so that the fingerprints are hard to see, skin may become red and shiny (after a substantial period of illness usually).

Hair: loss and poor quality regrowth.

Nails: vertical ridges, bluish nail bed, brittleness, fungal infections

SLEEP PROBLEMS

Unrefreshing sleep (waking up feeling worse than when you went to bed)

Reversed or chaotic diurnal sleep rhythms (ie. your body clock resets itself inappropriately)

Insomnia – difficulty initiating or maintaining sleep or Hyposomnia – lack of sleep

Hypersomnia – excessive sleeping (common in the earlier stages of the illness only)

Very light sleep

Unusually vivid nightmares

Dysania (morning fog)

Temporary paralysis after sleeping (also called waking paralysis, can last from minutes to hours) and/or early waking states (where you are neither asleep nor awake which can last for minutes or many hours)

In severe illness patients can become unconscious, comatose for up to 23, 24 hours a day (the brain becomes unable to maintain wakefulness)

URINARY TRACT PROBLEMS

Urinary frequency and bladder dysfunction, uncomfortable or painful/burning urination (Dysuria), difficulty passing urine or incontinence and/or nocturia (excessive urinating at night)

VISION & EYE PROBLEMS

Photophobia (extreme sensitivity to light). Oscillating or diminished pupillary accommodation responses with retention of reaction to light

Pain or burning sensations in the eyes, floaters, spots and scratchiness in vision, sluggish focus, an inability to focus or accommodation difficulty (difficulty switching from one focus to another ) can all occur as can double, tunnel or blurred vision, night blindness and/or a transient loss of vision and/or loss of depth of field, less ability to make figure/ground


distinctions

Nystagmus – a rapid involuntary oscillation of the eyeballs (eyes rolling back in your head)

Tearing and dry eye

WEATHER SENSITIVITY

Intolerance of extremes of hot and cold (exacerbation of symptoms during temperature extremes). Insomnia, migraines, irritability or generally ‘feeling off’ a day or two before the weather changes. Changes in temperature or humidity can cause stiffness or increased aching or pain in the muscles. Changes in barometric pressure can cause night sweats and spontaneous sweating during the day

WEIGHT CHANGES

Marked weight gain (often independent of dietary changes) or marked weight loss (often independent of dietary changes), rapid weight loss can also occur despite copious amounts of food being eaten

ME/CFIDS FATALITIES


Most deaths from ME/CFS, around two thirds, are due to organ failure (according to the National CFIDS Association). Death can also occur as a result of secondary infections in a similar way to AIDS, or be due to severe cardiac irregularities or problems with maintaining breathing.

CO-MORBID ENTITIES: (Note that some conditions, such as NMH for example, are instead included in the general symptoms list because they are so central to ME/CFIDS)

Increased tendency for Mitral Valve Prolapse, especially in children (breathlessness, fatigue, edema)

Viral myocarditis – inflammation of the heart (usually of little consequence but which can sometimes lead to substantial cardiac damage and severe acute heart failure. It can also evolve into the progressive syndrome of chronic heart failure. There have been sudden deaths associated with exceptional physical exertion in patients with viral illnesses)

Pericarditis (the outer layer of the heart, pericardium, is inflamed. Symptoms include chest pain, shortness of breath, and rapid, shallow respiration)

Secondary or reactive depression (as with any other chronic illness) or organic depression

Irritable Bowel Syndrome

Raynauds phenomenon (poor circulation)

Shingles

Systemic yeast/fungal infections are common (eg. Candida)

Multiple Chemical Sensitivity Syndrome MCSS

Carpal tunnel syndrome (weakness, pain, and disturbances of sensation in the


hand)

Pyriform muscle syndrome causing sciatica

Positive Fibromyalgia tender points (FMS) and Myofascial trigger points (MPS) are common

Temporomandibular Joint Syndrome TMJ (spasms of the jaw muscles causing intense pain)

Hashimoto’s thyroiditis

Sicca Syndrome

Endometriosis (the presence and growth of functioning endometrial tissue in places other than the uterus that often results in severe pain and infertility) may be more common in ME/CFIDS

Dysmenorrhea – menstrual pain experienced a week before, during and a few days after periods (other symptoms include; headache, suprapubic cramping, backache, pain radiating down to anterior thigh, nausea and vomiting, diarrhea, syncope)

More severe or new onset PMS

Migraines (nausea, vomiting, head pain, light and noise sensitivity which can last for hours or days)

Restless Legs Syndrome RLS

Sleep apnea

Irritable Bladder Syndrome

Cystitis (inflammation of the urinary bladder)

Prostatitis (inflammation of the prostate gland)

Sjogrens syndrome (autoimmune disorder affecting moisture producing glands in the body)

Complied by Jodi Bassett, 2004


Go to: www.ahummingbirdsguide.com

I had been thinking about the babies who
are born

with ambiguous/anomalous genitalia and the word, “intersexual,” was

eluding me.  I asked Doug.  The word he came up with
was,

“androgynous.”  I said that wasn’t quite the word I was
seeking,

and went to Google
for help in finding the precise term. 

I just can’t leave a blank like that in my mind.  It’s like
an

itch in the back of my brain.  I had to scratch it. 
Google

helps me out a lot in such moments when I draw a blank. 
Often, I

find the word I’m seeking in the first few results and go on with what

I was doing.  This time, the tagline on one of those results

sucked me in and I was off, clicking link after link until I had half
a

dozen or more pages open.  Then my browser crashed. 
After

restart, different
search terms brought me a whole new crop of results, and a
strong urge to blog.

I have written here previously about my feelings regarding

dualism and dualistic fallacies.  My own (relative)
enlightenment

on this subject came about through a long series of Tarot readings I

had done for acquaintances and clients over several decades. 
Many

times the cards told me, and I in turn told my subjects, that the
difficulties

they faced had resulted from their having tried to narrow everything

down to fit in one or the other of only two categories:  black
and

white, good and bad, right and wrong, male and female, etc.

I often explained to them that dualistic thought was an easy trap to
fall into,

born as we are in a bipedal and bisexual species on a planet with one

moon, circling a sun, rotating so that day alternated with night,
winter with summer,

etc.  I advised them to pay more attention to the shades of
gray

between the extremes, and to perceive the universe as relative rather

than absolute.

It would have been unwise, indeed, for me not to have heeded my own

advice.  Having thus altered my perspective, I began to
perceive

absurdities and injustices in my native culture that had been hidden

from me while I was still programmed with the dualistic

fallacy.   Most of my revelations and realizations in
this

sphere were metaphysical or psycho-social.  I hadn’t paid as
much

attention to the physical manifestations of the dualistic

fallacy.  I suspect that there are many people who, as I used
to do,

accept the gray areas of mind and spirit, while still thinking

that those two checkboxes on forms, marked “male” and “female”, cover
all the bases.

In 1993, Anne
Fausto-Sterling caused quite a flap when she suggested we

should abandon our two-gender system for a five-gender one that

includes “herms” (true hermaphrodites with an ovary and a testis or a

combined organ called an ovo-testis), “merms” (male

pseudohermaphrodites with testes and anomalous female genitalia), and
“ferms” (female pseudohermaphrodites with ovaries and

anomalous male genitalia).  She says,

That limited view of our species is
widespread, but

certainly isn’t supported by history or by current
statistics.  “Hermaphrodite”

has been appearing in written English for more than 600 years.
 

When Spanish Conquistadors came to the Americas, they encountered two-spirited
people in nearly every village they visited.  They
murdered every one they found.  Depending on which

definition of intersexism one uses, at least one in every 1,500 to 2,000 births
has anomalous sex or gender:

THOUGHTS
On the Business of Life

Do you read Forbes Magazine?  Ordinarily, I don’t.  If I had
a long boring wait somewhere and it was all there was to help me pass
the time, I might pick it up.  Generally, business and finance are
not my thing.  Greyfox told me when he mentioned finding several
issues of Forbes in the Felony Flats dumpster that he doesn’t usually
read it, either.  But the novelty amused him and he told me in one
of his nightly phone calls that he had found some interesting things in
them.

Every trip I make to town and each time Greyfox comes up the valley, he
gives me a “media bag”, or two if the pickings have been especially
lush.  These bags contain books he thinks I might like, videos he
has viewed and thinks Doug and/or I might find worthwhile, the Sunday
comics sections, Earthweek features and other interesting articles he
culls from the Anchorage Daily News for us, and whatever other
communications or entertainment media he enjoyed and no longer wants.

The media bag he handed me yesterday included three torn-out magazine
pages, one from each of three issues of Forbes  published in
2003.  Each one is the Thoughts On the Business of Life, each a
collection of quotes on a theme.  One was on travel, and I found
little there of interest to me even though I love to travel. 
Perhaps this quotation from Vita Sackville West explains that: 
“Travel is the most private of pleasures.  There is no greater
bore than the travel bore.  We do not in the least want to hear
what he saw in Hong Kong.”

The other two pages are on marriage and dating, respectively.  Here are some of the choice quotes from them:

“When you see what some girls marry, you realize how they must hate to work for a living.”

The Afternoon After

Back from the town trip, I’m back to the usual minimal function common
to such times.  Why is it that Greyfox and Doug seem to anticipate
these crashes of mine, and I don’t?  Could be euphoric recall, I
suppose:  my mind’s just not wanting to remember from one time to
the next what the last time was like.  That’s sorta like how we
are about remembering the rigors of childbirth.  If women
accurately recalled all that, we’d have a lot more one-child households.

Really, euphoric recall isn’t it.  I remember a long series,
decades long, of these fatigue-reactions.  I suppose it’s optimism
or positive thinking that allows me to get through the active days
without thinking ahead to how I’ll feel afterward.  While I’m on
the go I am going on the assumption that I can keep on going. 
Remissions have happened in the past.  It’s more pleasant and more
productive to work on the assumption that the next remission is right
around the corner.  That helps me maintain my will to live, and
makes it easier to get up and go for the one or two days each week or
so that I’m able to go.

Apparently I’m not totally euphoric when I’m out there.  I kept my
wits about me sufficiently yesterday to avoid committing myself to
attending an SCA event this weekend, though I did prepare for it to the
extent of searching the rehab ranch’s thrift shop for, and finding,
something Doug could wear for a costume.

I was eating my Thai chicken at a table in the deli section of the
supermarket yesterday, when I saw a handsome blond young man watching
me from across the room.  I wondered if I was throwing off vibes
or a scent or something.  I’ve been feeling kinda sexy, have randy
little undercurrent running in my neurochemistry.  Then the guy
walked over and tentatively called me by the SCA name of an old friend
of mine, a fellow freckled redhead we all called Scooter in her mundane
persona.

My eyes must have registered his mistake, for his next words were, “Are
you Piasa?”  “No,” I said, “but I know her.  Haven’t seen her
in years.”

He gestured toward the chair across from me, I nodded, and he sat down.  He had
recognized me, it turned out, but had just gotten my name confused with
Scooter’s.  He can’t be as young as he looks, because I haven’t
been to an SCA event for over 21 years.  We talked about the
Trolls, the bunch of stoner fighters with mostly Viking personas that I
used to hang with in the Society.  I told him a funny story about
being called on to read some runes left behind by one of the Trolls who
had done some electrical work in a house here in the valley, and he
told me of the death of the knight who had many times been a 
Baron of Eskalya and Prince of Oertha.

When I was playing SCA, as Lady Faianna ni Kenneth na Dunlioscairn, the
Matanuska-Susitna valley was the Shire of Selveirgaard.  Now it is
the Barony of Selveirgaard, and this weekend the first Baronial Tourney
will be held in Houston, between here and Wasilla.  When I told
Doug about it, he expressed interest.  I want to go. 
Something in that thought runs in harmony with that randy undercurrent
in my blood stream.  The man asked me for contact information so
he could call me with details.  I gave him my card and said that
if he tells me when and where, I might show up.  No commitment.

I already have a vague notion of where.  It’s a public campground
in Houston.  There will probably be little SCA signs pointing the
way.  If I rest and nap today, take ibuprofen to help me sleep
tonight (that’s the strongest drug I take and I use it infrequently),
maybe I’ll go.  Yesterday I was considering taking the old
pavilion down this evening, and setting up to stay the whole
weekend.  Today, I’ve reconsidered.  It would be less costly
in both energy and site fees to make just a brief appearance tomorrow.

At last night’s meeting I got further confirmation of the randy vibe
I’m projecting.  During the meeting, as we passed around a
birthday medallion one man held my hand unnecessarily long and actively,
and after the meeting another man, a visitor from the city, thanked me
for sharing and asked me to repeat my name.  Just when I get to
thinking I’m too old for all that, something inside comes back to
life.  Go figure.  I can’t blame it on spring.  I’m
baffled.

Routine vs. Mindfulness

I’m all ready for my bi-weekly trip to Wasilla.  I had my
bathwater hot and was pouring it into the camp shower bag before I
realized what I was doing this morning.  A small splash of boiling
water on tender flesh can do that:  bring you right around to
consciousness.  After that, once I realized what was going on, I
made an effort to stay mindful.

What was going on, of course, was routinization.  I have been
doing this long enough to have a conditioned set of moves
programmed.  If you’ve been doing the nine-to-five (or
three-to-eleven or graveyard shift) for any length of time, you
probably have a more strongly conditioned routine than I do. 
Routine itself may be so routine to you that you don’t think about
it.  To me, that’s sad.  I’m sorry for you if that’s the case.

I have read in several sources over  the years that Virgos do well
in a routine.  It’s not true for this Virgo, however.  Maybe
it’s all that Libra in my chart:  Moon, Mars, Venus, Neptune and
Midheaven and a couple of the major asteroids.  For whatever
reason, if I fall into a routine I begin to feel dead.  Maybe what
those astrologers noticed wasn’t that Virgos thrive on routine, but
rather that we tend to fall into routines rather easily.  I dunno,
really.  My battle cry is:  “Trains run on schedules and on
tracks.  Not me!”

My intention for the rest of this day is to stay mindful.  It’s
not only safer, but more interesting.  It won’t stop the
back-of-the-mind internal dialogue completely, at least not for more
than a few moments at a time.  If I can’t stop talking to myself,
maybe I can talk about what’s going on, anyway.  Maybe I’ll be
able to see what’s there:  the things I pass on the road, not just
novel new additions or seasonal changes, but some mundate details I
might have missed before or even might have appreciated and enjoyed
before and then became inured to.

Seeya!

Attachment to Objects

My parents tried to teach me that things are only “things” and that
they aren’t the things we should love.  At least they paid lip
service to the attempt.

I loved my first “jewelry box.”  It was thin cardboard covered
with pretty paper, a cube about 3″ to a side, just a box within a box
with a knob on one side of the inner box that made it a drawer to slide
in and out of the outer box.

When my not-cousin…

***digression:  This girl, my not-cousin, was one of a pair of
twins that belonged to the woman who was at the time traveling with my
ex-uncle Jack.  At the time, he wasn’t yet my ex-uncle,
but it was within days or weeks of my mother’s disowning him.  I
don’t think I’ve told that story.  If not, it’s an oversight I
must correct.***

…when one of the blonde twins tried to open my jewelry box by tearing
the top off instead of pulling out the drawer, I was devastated. 
Mama thought that she “fixed” it with Scotch tape, but Mama wasn’t a
Virgo.  It was never the same.  She also tried to shame me
for crying over the loss of a mere trinket and being angry at my
“cousin” over an accident.

On my first day in first grade, I carried another treasured object to
school.  It was a shoulder bag in the shape of a doll.  Her
full skirt, enclosed at the bottom, was the purse.  A flip-up top
held her torso and head.  A mean little boy grabbed the torso as
he ran by and tore it off.  I cried all the way home.

Both parents lectured me about not getting attached to things, mere things. 
Mama added some guilt to my grief by reminding me that she’d tried to
talk me out of taking the doll purse to school.  But their
lectures had little impact.  I remember the admonitions, but I
also recall my father’s tears of grief and angry words when Mama
accidentally smashed his treasured fiddle, and her long-lived grief
over a number of treasured objects that were destroyed in a flood.

Like my parents, I understand the futility of becoming attached to
transitory things.  Also like my parents, my understanding has led
me to only a partial attainment of detachment.  I think my metaphysical
explorations have taken me beyond what they taught me to an
understanding of something my mother, at least, never grasped: 
the futility of becoming attached to people.  When I’d mourn for
some lost or destroyed object, she’d tell me that I should reserve such
feelings for people, that things just weren’t worth my tears.

It has been years since I have shed tears over a broken relationship or
the loss of a material treasure, but today I was impelled to recognize
that I haven’t transcended all my material attachments.  It
started with an empty carafe.  As I reached up into the cupboard
for the coffee, I said to Doug, “Why am I always making coffee? 
Where does it go?”

After he reminded me that I’m the only one here who drinks it, I looked
down into the reflective inside of the thermal carafe and said, “We
used to have a bigger coffeepot.”  Then for an insane moment I
went into a nostagic fugue remembering the copper teakettle and big
yellow enamel pot and black filter cone I used at Elvenhurst. 
Making coffee then, when we were off the power grid, took longer and
was more work.  Having hot coffee throughout the day was also more
problematic.

Even though we still don’t have running water, the electric appliances
make the process much easier.  The drip coffeemaker does most of
the work, and does it quickly, more quickly that my propane stove
did.  The thermal carafe keeps the coffee hot for hours, and after
it cools the microwave warms it fast.  At Elvenhurst I had the
choice of leaving the pot on the woodstove (in winter) and having hot
burnt coffee on tap, or reheating the pot and usually forgetting and
letting it boil.  Burnt coffee now is a thing of the past, so I
really have no justification for nostalgia.  But if there’s one
thing I understand about psychology, it’s that feelings are not
rational.

Maybe
I’m making progress.  I have no nostalgia for my old leather
shoulder bag, the purse I carried for over a quarter century.  The
photo at left appeared a few years ago, illustrating a blog about the various things I do for a living. 
It illustrated thrift and “making do.”  The antique Navajo rug
came from a
flea market for $5.00.  The old warm fuzzy booties were in a
thrift shop
for a buck or two and I repaired their holey soles with camo duct
tape.  The shoulder strap of that old bag had been repaired with
duct tape, too, and the tape camouflaged with colorful scarves. 
The bag itself was something I shoplifted back when shoplifting was a
major part of what I did for a living.

While I carried that bag I had two husbands and a few lovers.  I
lived in seven different homes.  Except for the strap, which just
couldn’t take all the weight it had to bear and being hung on a hook
when I wasn’t carrying it, it was tough and durable, which I
appreciated.  It was also big.  A few times when we were
hungry, it held as much as 3 pounds of sausages.  On the minus
side, it seldom matched my shoes, and as it aged it increasingly
detracted from my image.  I replaced it a couple of years ago with
a bigger black Capezio bag I got for a buck in a thrift shop.  It
won’t last as long as the old one did, but then I probably won’t last
that long, either.

I guess I’ve been digressing, but I didn’t get very far
off-topic.  My point about the old buffalo hide bag is that
although I’d been attached to it for a long time (close to thirty
years), I retired it with barely a qualm when I found something that
suited me better.  Maybe that’s progress, maybe it’s just change.

I said, “Keep your head down!”

Hunter stands up as guide shoots at wounded bear

Full story:
http://www.adn.com/news/alaska/story/6821337p-6715481c.html