Saturday, July 21, 2007

The Aftermath

Thanks to having a few extra pain pills (and a long soak in FibroSoak, I felt pretty good when I woke up today.

If I'd had to do this a few years ago, before I started getting appropriate medication, it would've knocked me out of commission for a week -- the 4.5 feet from the bed to the bathroom would've felt like climbing Mt. Everest.  Today, I managed, in the same trip, to the back of the house to feed the cats and fetch my breakfast and to the front of the house for the newspaper (and yesterday's mail, which came in after I collapsed). Then had to lie down for a couple hours.

I'm not going to be able to do much today -- resting, napping, maybe some stitching -- but I will be able to prepare decent meals instead of pulling the emergency box of cereal bars out from under the bed.  With luck I may be able to go out for lunch tomorrow.

Which is a far cry from the last time I lost a fridge (pre-CFS), where after loading up the new one I was able to go to work the rest of the day, attend an evening meeting, walk a couple miles home after that meeting, and got up the next morning to do it all again.  There was no extra rest required because I'd done a little physical labor.

Unlike those who get CFS as children and don't know any other lifestyle except one punctuated with frequent rest periods, I am painfully aware of what I lost -- pre-CFS I often worked 18 hours a day, between my various jobs and business ventures; a few months later, I couldn't even manage 8 hours a day; at times, I spent 20 hours a day sleeping.  Biking a mile caused a collapse (I used to bike 20 miles at a time), walking a few blocks caused a collapse (I used to think nothing of hiking 25 miles), my beloved dancing left me gasping for breath.

After I was finally forced to stop working, I suddenly realized how little I'd been enjoying life for the past 12 years, when every expenditure of energy had to be measured against the risk that I would not be able to make it through the workweek if I did something pleasurable.  Without having to ration my energy so I could survive a week at work, I was actually able to do things on the spur of the moment, like go to a movie or shopping, instead of having to get rested up in advance in hopes that a trip to the store wouldn't cost me a day or two at work.


I got up, did a little something, had to take an hour nap.  Got up, spent a few minutes setting the kitchen to rights, had to take an hour nap....  That's the way it went all day, and it was a much better day than I anticipated. 

For those who think the problem is that I'm just too lazy to do housework, NO.  This is the real problem: I have to stop every few minutes and spend an hour or two resting, which means that there are not enough hours in a day to complete everything that needs to be done.

You prioritize what needs to be done.  For me, Priority One, the thing that gets done even if I'm too sick to do anything else, is "feed the cats".  Priority Two is feed myself.  A lot of days over the past 7 years, I didn't even get to item 2 on the list, much less to such niceties as doing dishes/laundry, because just getting out of bed left me on the verge of passing out. 

At one point when the virus was active and I had a 101 fever nonstop for six months, I went three months without buying groceries because I didn't get that far down the list before running out of energy.  Fortunately, I had fully-stocked cupboards and freezer before then, and equally fortunately, I didn't have much of an appetite because of the fever, though by the end, I was putting together some interesting combinations of the few things I had left. 

Thanks to finally getting the medications I asked for years earlier, a load of laundry no longer takes me a full week start-to-finish.  I can now get it washed, dried, and out of the dryer in two days instead of seven.  And I can finally load the dishwasher in one session, instead of it taking all day, between dizzy spells and naps. 

Which still isn't as good as a healthy person, but at least I'm not falling behind as quickly as I had been when I could manage no more than 30 minutes per week in a house that takes at least 60 minutes a week to clean.  Back then, my best efforts were only half as good as necessary, so every week, half of what should've been done fell by the wayside until it piled up to unmanageable levels.

Friday, July 20, 2007

Wiped out

It took some doing to find a fridge in-stock that fit the small space I have, but I did eventually find someone who had one, and it was $30 off, too.

Because whoever removed the fireplace didn't remove the chimney, the only way to fit even the smallest normal-size stove and fridge into the space next to the chimney was to make the doorway narrower.  After some negotiation and measuring, the guys did agree that making two right-angle turns was easier than going in a straight line and trying to squeeze through a door a hairbreadth wider than the fridge, so it came in the back door, like every other appliance. 

To do that meant rearranging the back porch so they had enough room to make a three-point turn.  Fortunately, (knock wood) this month I haven't been getting light-headed when I bend down, so I could actually pick stuff up.  And discovered how many times over the past 7 years someone was told "put that in the basement" and just tossed it out the back door, hidden behind something else.  Even some of my expensive tools were out there, and rusted because the rain does come in through the screens (duh -- they aren't glass windows to keep the rain out).

This morning, I unloaded the old fridge.  With all the rest periods, it took 2 hours, and then I collapsed on the couch with severe back pain from all the bending and lifting.  Luckily, they were running late, so I had 2 hours to lie down before I had to put everything back in the new fridge. 

My arm muscles were already so weakened from overuse that I could barely lift the shelf to move it to a position that would accommodate a container of milk.  And that was before I started loading the fridge.  :( 

By the time I was done, I had to lie down before I fell down, with pain level through the roof.  Fortunately, I had a couple spare pain pills so I could take some this afternoon.  I was so exhausted that I slept a couple hours, and am still horizontal.

At that, I simply stuck things in the fridge the fastest way possible and figured I'd organize them when I feel better.

Some of the things in the back of the freezer, that I wasn't able to farm out, still had chunks of ice on them when I put them back in!  Mom always said that when she was working for the electric company in the 1950s, they told customers that in the case of a power outage, if they left the door closed, things in the freezer would stay cold for four days.  There's your proof.

Since the ice cream was the first thing to go when the freezer malfunctioned, Brian was nice enough to bring me some choc chip mint on his way home from work, so I had a hot fudge sundae for dinner.  I wasn't up to fixing anything that took more time, and choc chip mint is safer to mix with the pain pills than margaritas! ;)

Any bets on how many days I'll be in bed after this exertion?



Wednesday, July 18, 2007

Interesting Websites

Newsweek had a short article about the perils of dating with disabilities -- being dumped as soon as you tell the truth about your health problems, no one even being interested if you mention them upfront. is a website for those with a variety of disabilities and health conditions. is for people with IBS and Crohn's.
[ADDENDUM: After posting this, Di in PA sent along two more: is a community for people with disabilities & has singles. is another dating site for people with disabilities]
We give up so much with CFS/fibro, it's not fair that we also have to give up companionship and affection. 
When the doctor explained to my husband that he was going to have to pitch in because this was not something that was going to go away, he muttered "I didn't get married to have to cook and clean".  And he was serious: whenever I relapsed, no cleaning got done until I felt well enough to do it, and if I wanted something to eat, I had to cook it myself.  He wanted to be taken care of, not be a caregiver.  He'd grab dinner on the way home and not even consider bringing something home for me.
Since kicking him out, I've found that the dating pool is full of men who are looking for someone to cook and clean for them, and they run the other way as soon as I broach the subject of disability.  I'd put an ad on a mainstream dating website and always had lots of responses until my symptoms got worse and I added the vague phrase "health issues".  Not a single nibble since then.  That was the only change to the text of the ad, so I know exactly what made me undesirable: honesty.
I'm not alone: statistics show that 3/4 of marriages affected by chronic illness break up.  Another activist remembers seeing a more refined statistic that 90% of wives stay to help, 90% of husbands leave.
As a friend and I often joke, there's a rumor in the fibro community that sex is a great pain reliever and sleep promoter.  We'd love to try it.  But no one is willing to date either us long enough for us to get to that stage; at some point before that, they realize that we're not completely healthy and stop calling.  Which is too bad, because if the rumor is true and "take one Tom (or Fred or George) four times daily" really does solve the pain and sleep problems, they'd be incredibly happy men.  I'd think doing a few extra chores would be a small price for them to pay for a benefit like that.
As Laura Hillenbrand's devoted long-time boyfriend observed, she's still Laura.  Most of any relationship is just "hanging out", and she can still talk, snuggle, watch videos, etc.  Yet the men I meet are more focused on the fact that I cannot hike, I cannot ski, I cannot jog, than on the fact that I can still go to concerts, watch movies, and other sedentary pleasures.  I still bake the best truffle brownies around, I'm still a gourmet cook, but they don't like my suggestion that they go hiking with their guy friends and I'll have dinner waiting when they get home -- they want a woman who'll go hiking with them.  I've even gotten that excuse from a guy who, when pinned down, admitted that he hadn't hiked in the past five years!
It's time someone recognized that the disabled are not eunuchs.  Having someone to love can provide a much-needed psychological boost (it's been proven that even in conditions with a biological basis, mood does have some effect on symptom severity). 


Got up this morning and there was brown liquid on top of the fridge door.  Sure enough, I opened the freezer, and stuff in there was melting.

Just when I was starting to feel well enough to tackle some of the chores that have been waiting, they get put on hold again so that I can empty out the freezer, take stuff to a friend's house, put the rest on ice, and go out looking for another fridge that will fit the small space available (any larger than the existing one and it blocks the doorway, but that's the only place to put it).  And then collapse for a week because the physical exertion is too much for me, while laundry and dishes pile up because I can't get out of bed for more than a minute or two without passing out.

And, of course, this has to happen when the person who usually drives me is not available, so I'm going to have to take the bus to look for this mythical small-outside/large-inside fridge. 

Tuesday, July 17, 2007

NY Times on CFS

Excerpts from two NY Times articles about CFS...

Chronic Fatigue No Longer Seen as ‘Yuppie Flu’

By DAVID TULLER             Published July 17, 2007

For decades, people suffering from chronic fatigue syndrome have struggled to convince doctors, employers, friends and even family members that they were not imagining their debilitating symptoms. Skeptics called the illness "yuppie flu" and "shirker syndrome." But the syndrome is now finally gaining some official respect.

Studies have shown that people with the syndrome experience abnormalities in the central and autonomic nervous systems, the immune system, cognitive functions, the stress response pathways and other major biological functions.

"There are many, many conditions that are psychological in nature that share symptoms with this illness but do not share much of the underlying biology," said John Herd, 55, a former medical illustrator and a C.F.S. patient for two decades.

"You can change people’s attributions of the seriousness of the illness if you have a more medical-sounding name," said Dr. Leonard Jason, a professor of community psychology at DePaul University in Chicago.

For Chronic Fatigue, Placebos Fail the Test

By NICHOLAS BAKALAR          Published: March 29, 2005

Many doctors believe that sugar pills are likely to be effective for patients with chronic fatigue syndrome, trusting that a placebo will help relieve the mental and physical exhaustion that characterize the illness.

But a new study has found that people who have the syndrome respond at a lower rate to placebos than patients with other diseases. The paper was published in the March-April issue of Psychosomatic Medicine.

Studies suggest that placebos relieve the symptoms for about 30 percent of patients suffering from a wide variety of illnesses. Migraine headaches, for example,respond at a rate of about 29 percent to placebo treatment, major depression at about 30 percent and reflux esophagitis at about 26 percent. ... among people with chronic fatigue syndrome, only 19.6 percent responded to placebos.

But Dr. Brian Fallon, an associate professor of psychiatry at Columbia University, offers a different interpretation. The fact that chronic fatigue syndrome responds so poorly to placebo treatment, he said, provides evidence that the syndrome has a physiological basis, though one that is still poorly understood.

"The finding by Dr. Cho and colleagues will come as no surprise to patients with C.F.S. who experience debilitating fatigue despite numerous treatment interventions," Dr. Fallon said. "That the placebo response in C.F.S. was far lower that in primary psychiatric disorders such as depression highlights the distinct nature of C.F.S. and how little we know."

* * *

This has always been the problem – doctors who believe that CFS and fibromyalgia are "all in your head" and therefore can be fixed with some counseling, a placebo, an anti-depressant or a kick in the pants. And when that doesn’t cure you, you’re scolded for not cooperating or "not wanting to go back to work", rather than the doctor considering that you need serious treatment to get well from a serious disease.

The only two treatments that have shown promise in improving CFS are both anti-virals ... hardly evidence that patients are imagining their symptoms!

Monday, July 16, 2007


According to the old Borscht Belt joke, the response should be "so don’t do that."

But too often with CFS patients, that simplistic solution to the problem is overlooked, in favor of telling the patient to do more until it doesn’t hurt. The theory is, the patient is just making excuses not to do things, or is simply out of shape and needs to get back into condition. Once you’re tagged with the CFS diagnosis, it just doesn’t cross the doctor’s mind that you might be a Type A personality who needs permission to "don’t do that" because you’re going to push your limits every day, even if pushing yourself makes the symptoms worse.

According to the 2006 Nisenbaum study, only 1.6% of non-CFS patients report "post-exertional fatigue", which is a hallmark symptom of CFS. In plain English, it means you feel worse when you exert yourself. For some of the most severe patients, it’ll kick in after walking just a few feet. One-third of people with idiopathic "chronic fatigue" reported feeling worse after exercise; that jumped to three-quarters in people who met the diagnostic criteria for ME/CFS. Even sedentary morbidly obese people didn’t approach that proportion, which shoots to heck the notion that CFS patients are tired because they’re sedentary or because they’re carrying a few extra pounds. (While I weigh more than I did before I got sick, I have a long long way to go – most of a hundred pounds more – before I qualify as morbidly obese. This theory doesn’t explain why I was tired at my perfectly acceptable normal weight, while walking 4-5 miles a day, though doctors have come up with creative explanations to justify their belief that they’re right and I’m wrong about my prior weight and activity level.)

Another activist reports "I began an exercise program and have tried to do so several times since then. Each time my response to it has been bizarre. The symptom exacerbation has been immense, not just at the beginning of the exercise program but throughout. Over time I was able to increase my strength and duration. In fact I usually felt good while I was exercising – but the aftermath was always devastating." That response is only "bizarre" to doctors who don’t know that that is *exactly* what should happen to a CFS patient. It’s how you differentiate between CFS (where exercise makes the patient sicker) and depression (where exercise energizes the patient). Doesn’t even require insurance pre-approval of an expensive test, though it does require that you believe the patient’s report on the outcome.

As has been noted by a number of CFS experts, ALL symptoms are "self-reported", so the assertion that CFS is fakery because the symptoms of fatigue, cognitive/memory lapses, reaction to exercise, etc. are self-reported is simply unbelievers grasping at straws to find support for their beliefs. When’s the last time your doctor followed you into the ladies’ room so he could see with his own eyes that you’re telling the truth about having diarrhea? Probably never. Or crawled in bed with you for a couple nights to see for himself that you need sleeping pills for insomnia before he would prescribe them? Yet, I’ve had several doctors over the years tell me that I’m not vomiting every morning because I didn’t do it on their shoes, I can’t be having diarrhea as often as I claim because I didn’t do it in front of them, and I’m mistaken if I say that I was awake all night every night for days because "sometimes, we think we are awake when we are actually asleep". Why? Because those are objective symptoms that, if true, would prove I’m really sick, so they have to find some rationale for ignoring them, and the easiest way is to tell the patient you don’t believe her, she’s either exaggerating or imagining things. has a series of definitions on their website, definitions that all emphasize malfunctions in neurological, immunological, cardiovascular and other body systems, causing a long list of disabling symptoms (only one on that symptom list being fatigue). Those neurological symptoms are essentially unknown to those outside the CFS community – both doctors and laypeople – because of the misplaced emphasis on "fatigue". For years, CDC denied those symptoms existed, and they still say that the tests that would objectively document those symptoms are "unnecessary". The instant that those tests are done, they would prove incontrovertibly that the patient is not depressed or hypochondriac,

Dr. Daniel Peterson observes "Fact: CFS differs from depression in onset, incidence, major symptoms, attribution and 5 immune variables: there is very little overlap between depression and CFS." Even the fatigue which is a symptom in both differs in quality and quantity – someone who’s depressed could spend the day walking around Disneyland withoutneeding a month to recover. Or, as one CFS patient described it to me, a person who’s depressed would get up and run out of the house in case of fire; she has to hope that the firemen find her, because she could not even get out of bed under her own power before the house was fully engulfed. I believe her, because I’ve had the same experience – if I’ve done a lot of bending the day before (e.g., unloading the dishwasher or clothes dryer), my abdominal muscles will not pull me to a sitting position ... I have to use the blanket as a rope to pull myself up. If it happens in summer when I’m sleeping without a blanket, I’m in big trouble!

In CFS Medicine & Science in Sports & Exercise: Volume 39(5) Supplement, May 2007, p S445, it’s noted that "Symptom exacerbation following physical stress has been documented in illnesses such as multiple sclerosis (MS), lupus and rheumatoid arthritis (RA). Similar phenomenology has been reported in CFS." If it’s been documented in MS, SLE, and RA, then why do the doctors call it "bizarre" and "complaints not credible" when it happens in CFS? It’s not like this is a symptom never seen before. They have to deny this problem, which is documented as real in other more acceptable diseases, in order to continue denying the existence of CFS.

I actually got one of my doctors to admit that there is another disease where it’s detrimental for the patient to exercise; he immediately made clear "but you don’t have that." Never said I did. All I was going for was a statement that what I was describing was not beyond the realm of possibility, not totally unheard of. He had no explanation for why my report of being made worse by exercise was "impossible" even though he knew it was typical for patients with another disease. The explanation was clear to me: this known adverse reaction was only impossible for him to fathom in CFS; it was a perfectly logical symptom in a "real disease". (And, in fact, doctors are constantly lecturing that you shouldn’t exercise while you have the flu, but the same flu-like symptoms in CFS are not supposed to be used as an excuse to stay in bed, rest, and drink plenty of fluids.) It seems doctors’ logic goes out the window as soon as the phrase "CFS" is uttered.

"Within 24 hours of the exercise challenge, 85% of controls indicated full recovery in contrast to 0% of CFS patients. The remaining 15% of controls recovered within 48 hours of the test as opposed to only one CFS patient. Clear differences in number and type of reported symptoms were also found between groups."

The American College of Sports Medicine concludes "The results of this study indicate that CFS patients suffer symptom exacerbation following physical stress. As with MS, lupus and RA, post-exertional symptom exacerbation appears to be both a real and incapacitating feature of the syndrome. The delayed recovery response evoked by a single bout of exercise stress is distinctly different from that of sedentary controls. The debilitating effects experienced by these patients help to explain activity avoidance, which should be considered when prescribing exercise and activity management programs for CFS patients."

In other words, ACSM’s recommendation is that when a CFS patient says "it hurts when I do this", the doctor’s response should be "then don’t do that".

Sunday, July 15, 2007

Photo Exhibit in Boston

Source: CNHI News Service
Date:   July 13, 2007
Author: Julie Kirkwood

Fighting fatigue: Local woman, art show work to battle stigma of chronic
fatigue syndrome

Jean Harrison knows that some of her former colleagues in the art world
think she was a prima donna, or worse, that she was lazy.

Toward the end of her career restoring paintings, she was working at the
Peabody Essex Museum in Salem, Mass., and had days when she couldn't get
herself out of bed before 1 p.m. She often worked at the museum alone
until 11 p.m. or later eating Cheez-It crackers and drinking Diet Coke.
Her work sometimes wasn't finished until the very last minute. Some days,
she slept 16 or 18 hours.

Thinking it might be depression, she saw a doctor. She took kung fu
classes, hoping exercise would help. She even got tested for attention
deficit disorder. "I was eager to find anything that would treat this,"
Harrison said. "I knew there was something wrong." Nothing worked. She got
worse. "I went to the museum one day and said I thought I would probably
be out of work for a while," Harrison said. "I was crawling on the floor -
crawling, literally - to get to the bathroom... I was probably asleep
almost 20 hours a day, easily."

That was in 1994. Harrison, 54, now knows she has chronic fatigue
syndrome, a disease that affects an estimated 1 million Americans, the
majority of whom have never been diagnosed.

It is a disease that many people assume is all in the patient's head, even
though numerous research articles have been published showing otherwise,
said Kim McCleary, president and chief executive officer of a patient
advocacy group called The Chronic Fatigue and Immune Dysfunction Syndrome
Association of America.

That's why The CFIDS Association has put together a photo exhibit, funded
by the federal Centers for Disease Control and Prevention, of people who
have chronic fatigue syndrome. It opens at the Boston Public Library on
Monday, July 16. "We chose people who might, as a group, represent people
you'd see in the mall or the library, people who would remind you of all
the people in your life that could have this," McCleary said.

The purpose is to help the roughly 80 percent of patients who don't know
they have the disease to learn about chronic fatigue syndrome and feel
comfortable seeking help, she said. "This is real and it has a devastating
effect on people's lives," McCleary said. "But there's hope out there.
There's courage and dignity, even though there is still some stigma."

Harrison believes her chronic fatigue symptoms started when she was only 6
years old, and have reoccurred periodically throughout her life. She was
lethargic through most of her childhood, but she got good grades and
breezed through Wellesley College, she said, earning an art history
degree. Then she had a bad episode several years later when she was in
England learning art restoration. She felt ill and her glands were so
swollen, she said her doctor thought she had lymphoma. This was in the
1980s, a few years before the phrase "chronic fatigue syndrome" was coined
and made a big splash in the American media.

What brought it to the public's attention were two cluster outbreaks of
the symptoms, McCleary said, and the scientists looking for the cause
quickly discovered other patients who weren't associated with the
clusters. The stigma followed close behind, as patients - often Caucasian,
upper-middle-class women who could afford to push for answers - went to
their doctors complaining of symptoms that couldn't be confirmed by any
laboratory test.

"The term 'yuppie flu' came into use," McCleary said. "That was a real
misnomer but it stuck. Then it sort of developed into this perception that
these were just whiny, white women - type A personalities - who said 'I
want it all,' then decided they didn't want it all anymore and this was
their way out... Medical providers just sort of wrote these people off
as having a character weakness or something. It really did create a
barrier to medical care."

Harrison was fortunate enough to find a doctor who took her condition
seriously and supported her, even when she wanted to try an experimental
new treatment. Harrison had read studies showing that some chronic fatigue
syndrome patients have low blood volume, so she went to Salem (Mass.)
Hospital to get tested. Sure enough, her blood volume was low.

Her doctor supported her decision to try something experimental: regular
infusions of saline solution directly into her bloodstream. Initially the
infusions were given through her arms, but she now has a Port-A-Cath
surgically implanted in her chest. She gives herself infusions several
times a week.

Though the infusions made her feel much better, she said chronic fatigue
is still something she fights every day. In some ways it's harder now, she
said, because she looks healthy. "I'm not missing an arm," Harrison said.
"I'm not missing a leg. I look fine."

As a result, people don't understand why she avoids even the lightest
physical exertion, which she has learned through experience will make her
exhausted for days.

Even her own family looks at her with skepticism when she suddenly has to
lie on the floor because her blood pressure has dropped, even though
"orthostatic instability" (instability when standing) is a well-documented
side effect of chronic fatigue syndrome.

When Harrison stands up, her blood pressure drops, her pulse races, she
feels dizzy and her brain goes haywire. If she stands up in the middle of
a telephone conversation, she said, she loses her train of thought. "I'm
not stupid," she said. "It's just there's something neurologically wrong."

Harrison said she hesitated about telling her story because some people
still don't take the disease seriously. She said she knows other people
living North of Boston who have chronic fatigue syndrome but don't tell
anybody because they don't want to lose credibility. Instead, she said,
they say they have a back problem, or make up some other excuse to lie

What made her decide to tell her story is the same thing that McCleary
believes motivated patients to have their portrait taken for the chronic
fatigue photo exhibit.

"It's so important that the message get out, how devastating this can be,"
Harrison said.

If you go

* What: "The Faces of Chronic Fatigue Syndrome" photo exhibit, part of a
  $6 million public awareness campaign funded by the U.S. Centers for
  Disease Control and Prevention
* Where: Boston Public Library, 700 Boylston St., Boston
* When: Monday, July 16, through Monday, July 23
* How: Admission is free. For more, call 800-442-3437 or check out

(c) 2007 Community Newspaper Holdings, Inc.