Friday, December 15, 2006

The Reality about Charity

Darcy writes: I don't know why they think everyone with a chronic illness gets all this positive attention from everyone. Most people have pretty much left me alone, not rushed to my aid.

This is another of the common misconceptions about CFS: that people are "enabling" us by providing money and help so that we can take to our beds, thus encouraging us to continue "the sick role" while we "avoid responsibility". Nothing could be further from the truth for most of us.

Certainly, there are those few who are independently wealthy who can hire a houseful of servants, but most of us don’t have that luxury. Spouses and children can’t be in 24-hour attendance; they have work or school, or may themselves have the CFS virus. And that assumes that you’re not one of the 3/4 of chronic illness patients whose spouse bails – then you have no money and no help.

One of the more tragic parts of the CFS story is the number of people who are told by the government that their friends and family should be responsible for taking care of them, but are told by friends and family that it’s the government’s job. So, they quietly fall between the cracks because they’re not well enough to waste energy being The Squeaky Wheel.

And even if you have energy, you run into bureaucracy. It took me 5 years to finally get Social Services out to evaluate me. They agreed that I needed household help, but unfortunately, the law says that if you’re under 65, you cannot get government-paid housekeeping services just on your doctor’s signature. You need a judge to declare you officially disabled. If you are able to earn a mere $850 a month, you’re considered "self-supporting" and don’t qualify for an official determination of disability, but that $850 won’t stretch to cover the barest essentials of life, much less niceties like a weekly cleaner.

Some disabled people are fortunate, in that the charity related to their disability has enough volunteers to send them help. Unfortunately, many disease charities have all to do to raise research money and don’t have volunteers to send you. You may be just as disabled as the gal down the street, but because you have "the wrong disease", you fall through the cracks and get no help, because the charity that provides her assistance only helps those with that specific disease.

There’s another myth that churches are glad to send volunteers. If you haven’t been a regular church-goer, forget it; they only help their own. And even if you have, it’s rare to get volunteers for the duration of a chronic illness. They’re good about sending help for a week or two after the birth of a baby or a surgery, but I personally don’t know anyone in any of my support groups who has gotten a commitment for years. A friend and I contacted a number of churches, and never received a response from any of them. Someone else suggested to me that the religious high schools have a community service requirement; told me to call Brother X and Sister Y and tell them that Mrs. Z had told me to call, because she was sure they would help if they knew I was referred by a student’s parent. Again, I left messages, but never received a response.

In my own case, I was always the instigator. If someone else was sick, I made sure they got cards and phone calls and visits. When I was the one who was sick, no one else picked up the slack, because it had always been "my job" to organize such things. I was too sick to do the work, and it was sort of ridiculous to send myself cards and phone myself! I phoned my friends regularly until I realized that it was entirely a one-sided effort: they never called back if I left a message and if I somehow managed to get them live, they were "too busy" to say more than Hi/Bye. The friends willing to talk longer are those who are themselves disabled, who know what it’s like to be abandoned by healthy friends when you can’t keep up.

Although it’s been suggested that my friends "no longer help me because I wore out their patience with constant demands", the fact is, none of my girlfriends did anything even at the beginning. Zero, zilch, nada. Apparently just inviting them to lunch was too much of a "selfish demand"!

Just as Darcy observes: "people have pretty much left me alone, not rushed to my aid." If I was too sick to come out and play, they weren’t going to change their plans to accommodate me. It has always been made clear to me that if I could get myself over to the far end of the county to watch Johnny’s game, I was welcome to join them; if I felt up to coming along to jet-ski for 6 hours straight, I was welcome to join them. But if I didn’t feel up to doing anything other than talking, they were "too busy" to squeeze that in. I had to accommodate them, not vice versa. They don’t call to chat, they don’t drop in with casseroles, they certainly don’t shove their husbands and children aside to do my housework.

I think the myth was started by people who needed to assuage their own guilt about not helping by convincing themselves that there were lots of other people helping already, so their help wasn’t utterly necessary.

Almost every female CFS patient I know does her own housework as best she can, because there’s no help available from any source. Ironically, studies have shown that the CFS patient who receives as little as one hour a week of household help has a better chance of recovery than one who must do all the chores herself.

Monday, December 11, 2006

Article in this morning's paper

This story is taken from Sacbee / News.

Tired all the time No tests can yet detect chronic fatigue syndrome, which is probably why the medical establishment took two decades to recognize it as a serious ailment. But its victims can vouch for being ... By Dorsey Griffith - Bee Medical Writer
Published 12:00 am PST Monday, December 11, 2006

The yuppie flu. A hypochondriac's excuse. A drain on the Social Security disability system.

Chronic fatigue syndrome has been called a lot of things the past 20 years. Mostly, it has been a stepchild of an illness, maligned or misdiagnosed by doctors, pooh-poohed by employers and neglected by drug makers.

That is beginning to change. The federal government last month launched its first awareness campaign about CFS. The cause is bolstered with new research and millions in additional funds dedicated toward finding a cause and possible cure.

"This isn't hooey," said Dr. William Reeves, chief of the chronic viral diseases branch at the federal Centers for Disease Control and Prevention. "This illness ... was thought to be a bunch of upper-class, yuppie, white women who were whiners. But there is a substantial body of solid, scientific literature accumulating."

Although symptoms can vary among CFS sufferers, their illness is typically marked by aches, fatigue, memory loss and confusion, and insomnia or unsatisfying sleep.

In the parking lot of a Mercy medical building after the annual CFS support group holiday potluck, the impact of the illness was evident. As members prepared to leave, one lay prostrate in her van sound asleep, trying to muster the energy for the drive home less than 10 miles away.

Although adrenaline fuels the spirit of the group on this occasion, members describe an illness that disrupts every aspect of their lives.

"A few days ago, I felt like I had a 100-pound anvil inside me," said Suzy Parker, a former ranch hand and horse trainer from Auburn now relying on disability benefits. "We miss the mingle of a work world. This party is the highlight of my social life."

"When I wake up, I feel like I've been running a marathon," added Jennifer Cox, 29, of West Sacramento. "I feel like Jacob Marley, like I've been carrying chains all my life."

Although researchers have not pinpointed a single cause for chronic fatigue syndrome, they know that at least 1 million Americans have the illness, and that it affects men, women and to some extent children -- regardless of race, ethnicity or economic status.

"Someone who has CFS is as disabled as someone with muscular sclerosis, someone with AIDS or end-stage renal disease," said Reeves, of the CDC. "The others will die from their diseases, but those with CFS are no less disabled."

No blood test or X-ray can detect chronic fatigue, but documented changes in the brain structure, immune system, central nervous system and genetic makeup of CFS patients provide potent clues for unraveling its mysteries.

Those afflicted with CFS are relieved to see that the medical establishment is beginning to believe that their suffering -- long thought to be imagined -- is real.

"We, as people who are at the bottom of the food chain, are at their mercy," said Roseville resident Mike Riley, who has CFS. "But it's probably the most seriously the federal government has ever taken the disease."

Health officials in the United States first took interest in the condition in 1985, after a cluster of people in Lake Tahoe's Incline Village came down with a mysterious illness that featured headaches, sore throats and prolonged fatigue.

Similar outbreaks were reported, including one in Raleigh, N.C., about the same time.

"The entire North Carolina symphony came down with a flu-like illness and several members never recovered from it," said Dr. Charles Lapp, who runs the Hunter Hopkins Center in Charlotte, a CFS clinic, and sits on the federal CFS advisory committee.

Although mononucleosis was suspected, research determined that the virus that causes mononucleosis, Epstein-Barr, was not the sole cause for the patients' long illnesses.

The CDC officially named the malady "chronic fatigue syndrome" in 1988. But the name would be little help to those affected, who continue to suffer in the absence of adequate medical care and lingering skepticism.

Frustrated by the general lack of empathy, people with chronic fatigue often resort to doing their own research on the Internet, and those desperate enough seek unproven therapies.

"I've been fired by doctors," said Arlene Rubb, a 58-year-old Rocklin woman who believes her illness was triggered by an aerobics class and made worse after a car accident in 1982. "We are too hard to treat. We don't fit in a box."

A former hiker who ran a group home and worked as a bookkeeper, Rubb is now disabled. She takes nine medications, including morphine for pain and a stimulant for energy during the day. She requires oxygen while she sleeps, which she does in a reclining chair in her living room.

Rubb has lost a lot of mobility and has limited stores of energy. She can barely walk the 50 yards between her home and mailbox. She gets exhausted just talking on the telephone; her neck muscles are so weak that her head hangs down, her chin resting on her chest.

She said she could not manage without the help of her husband of nearly 30 years, Rick Rubb, and others who shuttle her to doctor appointments and pharmacies.

"It's humiliating," she said of the debilitation which, over the years, dashed her dreams of a college education and weighed on her relationships with friends and family.

"I was always a very independent person, and I have reached the height of dependence."

Like most people with CFS, Rubb suffers mentally, too.

"I always had a good memory," she said. "I never had to study in school. Now, I won't drive at certain times. I get lost sometimes, right here in Rocklin."

Dr. Frederick Herman is a Granite Bay physician whose practice welcomed many CFS sufferers before a diving accident forced him to retire his license in early 2005. He said his own battle with fibromyalgia, a related illness, helped him understand patients such as Rubb.

"Physicians are always frustrated by illnesses they can't immediately cure," he said. "If you have an ear infection, an ingrown toenail or pneumonia, you can fix that and go on. You are never trained to just treat symptoms and be a comfort to the patient."

Part of the CDC's awareness campaign aims to change that, said Reeves, with the introduction of a CFS diagnostic tool kit and a push to get medical schools to teach the subject.

The federal government also can point to a growing body of scientific evidence to help sway physicians who still doubt the illness is real.

Dr. Anthony Komaroff, a professor of medicine at Harvard Medical School and longtime CFS researcher, cites, for example, some genetic abnormalities in people with CFS. He said he believes the illness requires a genetically vulnerable immune system which is then triggered by certain injuries or infectious agents.

"The immune system becomes engaged in a constant, months and yearslong low-grade war against this foreign infection," he said.

Reeves said the central nervous system -- the brain and spinal cord -- clearly plays a role in chronic fatigue syndrome. He said physical or emotional stress, commonly cited as a condition preceding CFS onset, activates a part of the nervous system involved in the immune system and body's use of energy.

"Do we have a rapidly increasing idea of the pathophysiology of CFS? Yes," he said. "Do we have something amenable to a curative treatment? I am hoping, but I don't have anything now."

For Arlene Rubb and others like her, that means the daily struggle will endure, and the necessary adjustments that make life bearable will continue.

"It has changed everything," she said, but as time goes by you learn how to accept it," she said. "It's the way it is."

Go to: Sacbee / Back to story

Why is this blog?

Why are we here?

There’s recently been criticism in the comments to this blog that someone came here looking for information on fibromyalgia and all she found was personal experiences. But that’s not the reason this blog is here – there are many good websites where you can find medical information about CFS/fibro.

This blog is here so that people can understand the day-to-day reality of living with these diseases, and get a better picture of what it is that we have to deal with: beyond the classic misconception that CFS is just "tired" or "lazy".

Because those of us who live with it, know that you can "tough it out" through tired. We’ve been successful hard-working people, committed athletes, even Olympians – we know about being tired and about working through it, and have done that many times.

What you cannot do is push through when you simply collapse on the floor. All of the stories I hear about people who were forced to leave their jobs contain one of two elements: either they could no longer perform their jobs because of the cognitive/memory dysfunction (an accountant who couldn’t remember how to put together a simple income statement) or because of total physical collapse – the physical inability to do the work. I physically couldn’t lift a file from the floor to my desk, or carry it to the file cabinet, or lift it into the file cabinet – muscles which a few weeks earlier were capable of moving furniture were suddenly too weakened to lift a 5-pound file without dropping it. With my shoulder locked in the down position, it was physically impossible to put anything on a shelf or use the top two drawers of the file cabinet ... the drawers where we kept the active files.

Someone with one of the "acceptable" neuromuscular diseases would get praise for having at least tried, even if they didn’t succeed. Only a CFS patient gets condemned for having failed. Somehow, the compassion that extends to other diseases doesn’t come along with CFS, even when the symptoms are similar.

This blog is here so that people can see that I *did* "get my lazy ass off the couch" to go somewhere, and had to ask a complete stranger for a ride because my legs would not support me one step further. This blog is here so that I can share the days when I walk to the kitchen to prepare lunch, and my knees buckle when I get there, leaving me to eat whatever is stored low enough that I can reach from lying on the floor, until I have enough energy to stand up again. This blog is here so that I can share the frustration of trying to put things away and dropping every single item on the floor in the process of lifting it to its destination. (And to recommend that the CFS patient give away all your glassware/china and replace it with unbreakable plastic cups and plates, so you can drop the stuff and not have to clean up shards. You also may want to get a sippy cup so that you can drop it and only have to wipe up a few drops, not the whole cup of liquid.) This blog is here so that people who assume that I’m just "too lazy to do housework" can understand that doing a single load of laundry takes all week, as the up-and-down bending triggers back spasms so severe that I have to crawl back to bed and endure the spasming pain for hours before I can undertake the next step the next day, and the entire process of doing a load of laundry puts me a week behind on the dishes and mopping.

This blog is not a cheery story of triumph over disability, because Modern Medical Science can do nothing to help me; the only pills that helped the symptom had such terrible side effects that taking the pills made me even more disabled. This is the reality of the day-to-day struggle to deal with a misunderstood disabling disease that garners no respect and little help, and, more importantly, subjects the patients to verbal abuse from people who don’t understand that "fatigue" is merely the tip of the iceberg.

Although one of the theories about CFS has been to encourage patients to just push through the fatigue (and among those who believe it is depression "exercise will give you more energy"), that’s just not the way it works. Researchers trumpeted their "proof" that CFS patients could exercise just as much as healthy controls ... until they re-examined their data and found that after four days of keeping up with the healthy people in the group, the CFS patients relapsed. They wrote a chastened letter to the journal correcting their conclusion. And, in fact, this is the anecdotal evidence in support groups, too – for 3 or 4 days, patients can push themselves to keep up with family and friends on vacation or to attend a CFS conference, but invariably, after 4 days, the patients wind up in bed, admitting that they were "running on fumes" and it was sheer willpower that kept them going on the fourth day.

Hardly the ringing endorsement of the notion that a CFS patient could keep going if they’d just push themselves a little harder. In fact, validation of what CFS patients have talked about for years – the Push/Crash Syndrome. At the beginning of the illness, every CFS patient succumbs to the temptation to push themselves to do a little more on a good day, catch up on the chores, until you learn that pushing on a good day leads to a week or two of bad days. Slow and steady is more productive in the long run than push/crash.

This blog is here to educate those who believe that a CFS patient lives a pleasant life of leisure, where the only symptom is having to regularly indulge in naps. To a busy working woman, being able to nap whenever you please sounds heavenly. Except when that busy working woman is a CFS patient who gets fired for sleeping at her desk, as many of us have.

In fact, my CFS is accompanied by flu-like symptoms ... there are times I spend the whole day in the bathroom. That’s not pleasant, and having to struggle to my feet and hurriedly scamper to the bathroom despite lightheadedness that threatens to have me faint en route certainly isn’t leisurely. Other patients (such as best-selling author Laura Hillenbrand) have constant vertigo and are therefore completely confined to bed. Trust me, it’s not as much fun as it sounds. Neither is six months with a 101 fever my idea of fun, or being able to eat only one bland food for weeks on end because everything else comes back up.

I’d trade you your job for my so-called life of leisure. I guarantee, within a week or two, you’d be begging for your health and your job back. It’s no fun having to constantly calculate "if I cook a healthy meal, I may be too exhausted to bathe" and frequently having to do without dinner because by the end of the day your hands are too weak even to get the foil wrapper off a cereal bar.

The problem is, once I have a job and health, I'm not going to be willing to give them back to you.  My goal for the past nearly-seven years was to get healthy and back to work, DESPITE uninformed doctors whose misguided treatment only made me worse.