Self-Esteem: "What did I do to deserve this?"

From the time of Job in the Old Testament, it's only natural that at some point for the person who is beset with chronic illness and all the bs baggage that comes with it, cries out:
"What did I do to deserve this?"

It's also a natural law that the questions you choose to ask determine the answer you will get.
If you ask, "What did I do to deserve this?", you invite the demons of self-abuse to give you answers.
You will open yourself up to recriminations over the past (I should have gone to the doctor sooner, I shouldn't have played rugby and sustained injuries, I shouldn't have travelled abroad and gotten malaria, I should have eaten only organic foods.... and so on and so on....)

Unfortunately, today in America there is a huge industry and culture based on telling people who are sick that they did something to deserve illness. There are doctors, frustrated by being unable to cure an illness, who seek theories that blame the patient for getting sick. There is a huge industry of self-help pop psychology that tells the patient that they are to blame (you have a bad attitude, you are negative, you haven't forgiven some a**hole that hurt you in the past, blah blah blah). Then there is an industry of "natural health" proponents who say you are ill because you don't follow their diet, buy their blue-green algae, etc. Even more confusing is the fact that there are so many "natural health" diets and products, and they contradict each other and cancel each other out. You should eat a diet high in animal protein vs. you should eat only vegan raw foods vs. you should eat only vitamin smoothies vs....... etc. etc.

OF COURSE people with Fibromyalgia and Chronic Illness want to and should seek out all techniques (medical, psychological, naturopathic) to improve their health and make their lives more meaningful!

But the dark side to this is that in approaching with an "what did I do wrong?" attitude, we open ourselves up to BLAME for our illness. And the self-blame feeds into the depression, anxiety and stress that clearly makes Chronic Illness WORSE.

The truth is.... none of us is perfect. Even saints have made mistakes and done things they regret. Mother Teresa did not follow the Atkins Diet or use supplements. Hardened criminals can be psychologically messed up, full of "unresolved issues" but still have rock hard, strong, predatory, healthy bodies. If we search in anyone's past, with an attitude of blame, we can find something they did that could be a cause of chronic illness. But not all of those people did get sick. And the people who did get Fibromyalgia did not live any worse lives than those who stay healthy.

"What did you do to deserve this illness?" Nothing, because nobody deserves Chronic Illness.

When you are tempted to fall back into the addictive mindset of "What did I do to deserve this?", try replacing it with:
"What can I do now to make my life the best it can be?"

Now THAT question will lead you to better quality answers, answer that will lead you to self-care, hope, and appreciation of what you have, without shame and blame.

Get a Goat!

There is an old parable in Eastern Europe, about a man who goes to the Wise Man to complain that his life is overwhelming. "I work full time at a stressful job, then I come home and I have to deal with my bossy mother-in-law, my stressed-out wife, 3 crazy kids running around screaming, the dog barking. I don't have a moment's peace. What can I do?" The Wise Man replies, "Adopt a goat." This is very strange advice, but after all, he is "the Wise Man," so the man buys a pet goat at the market and brings it home. A week later he is back at the Wise Man's Door. "What were you thinking? My life is worse than ever. My wife is yelling at me for buying that goat, the dog keeps chasing it around the house and knocking everything over, the goat chews up everything in my home, it has torn up my garden, eaten my favorite clothes, ripped up the sofa, the kids keep crying when the goat knocks them over. Ever since I followed your advice and got a goat, my life is chaos!" So the Wise Man replies, "Get rid of the goat." The man sells the goat at the market to another buyer and goes home. A week later, the Wise Man runs into him and asks, "How are you doing?" "Oh, I'm doing great! My family is so happy every since we got rid of that goat. Now when I come home, my wife is happy to see me because she doesn't have to chase after that goat anymore, the mother in law is just her usual self now that she's not complaining about the goat anymore, the kids are running around yelling and playing, the dog is just his usual mellow self. I come home to a happy household and it feels so peaceful without that goat. Thanks for your great advice."

"Get a goat" is shorthand for that moment when you feel that life is overwhelming, and then you add something even more crazy for a short time, and by comparison, your usual overwhelming life seems manageable.

In keeping with that, in November I got a 'goat.'

This goat came in the form of year old female rescued 68-lb mini Presa Canario dog.
I went to donate some of Akasha's old stuff to a wonderful rescue called Mariah's Promise. While there, our of sheer morbid curiosity I went to look in the cage of a Presa Canario.

At that moment, the only thing I knew about Presa Canarios was that a couple of them were responsible for killing a woman in San Francisco. I had always said I would never go near one of those dogs.

Then Bella came out of her cage, and our eyes met.

Less than a week later, she was living in my house and sleeping in my bed.

Love makes you do crazy things, like foster a year old dog with boundless energy who was not toilet trained, not accustomed to living inside a normal house, who acted like a wild hyena.

But she was sooooooo cute and loveable and funny. She was trying so hard to be my best friend, to show me that she was the best dog ever and to learn all about this new world she was in. And I was trying to both socialize her to the new world of being a pet dog, and train her in the basics of pooping outside, walking on a leash, etc.

But she was definitely a GOAT.

Despite my efforts to toilet train her, she managed to poop on my carpet at least once a day.
She somehow got ahold of my prized Ugg boots and chewed holes in the soles.
She peed in her crate, filling the air in my bedroom with the stench of urine.
She attacked my big dog Luca, chewing up his face so that he still has scars, and resulting in the only true dogfight I have ever seen.
She harrassed little Ozzie off all his hiding places, even squeezing herself behind the sofa and onto the windowsills.
She grabbed the tablecloth and pulled it with her mouth, with a full place setting and burning candles on the table.
She chewed all the screws out of my desk so that it now is just held together with glue and faith.
She ripped my CD's out of the entertainment center and crunched them up in her big jaws.
She rubbed against the walls to scratch her back like an elephant and broke electrical socket covers off.

Each moment of the day was chasing after her and trying to divert her to non-destructive games and toys. I could never quite anticipate what she would come up with next.

As a Christmas Miracle, Bella found her new home on Christmas day. The best doggy home possible, with kids to play with and a mom who is a professional dog trainer and knew exactly how to handle her. She is doing great and in fact she is a model citizen. I think that she is going to be a showcase for what a good dog trainer can do. Actually, I love and miss that wild child Bella, but I know that she has a much better life now, and that is what a good foster mom is supposed to do for their foster dog: get her ready for a lifetime of love with a new family.

Now, even months later, I have a whole new attitude about my formerly unmanageable life. I wake up and make my morning coffee and take my pills with a sense of gratitute that I don't smell any Bella accidents. What was formerly depressing silence I now see as peaceful quiet. My own two dogs (I used to think I couldnt deal with them, having Fibromyalgia and being so tired) are remarkably undemanding compared to the Energizer Bella. I'm still amazed at how much I appreciate my life now, after dealing with her for a month.

"Goat Therapy" is certainly a radical solution, like electroshock. I can't say I recommend it. But, I am determined now to see if I can use the crises that come up in life as a way to "get a goat" and then really enjoy the relative bliss and order that comes when you experience simply a little less chaos.

Emotional Kung Fu: The Block

So there is this new "theory" about Fibromyalgia making the rounds that says that the reason people with Fibromyalgia complain about pain so much is that they are just super-sensitive to pain, and so they are at the doctors all the time complaining about pain that non-fibro people just deal with uncomplainingly. Even the New York Times is guilty of publishing an article in their health column promoting this message. While this theory may have originated in a highly scientific study of pain receptors becoming over-activated by over-stimulation, by the time it gets watered-down to the jerk on the street, it goes like this: if you have FMS pain, you're just an oversensitive complainer.

Now, this theory is insane. There is no correlation between over-sensitivity to pain and FMS. I personally have a very high pain tolerance. Before I was diagnosed with FMS, doctors were always exclaiming to me that they were shocked by my high pain tolerance, that I refused pain medicine where others begged for it, that I could tolerate all kinds of procedures without flinching. I still hear that from doctors, rolfers, shiatsu practitioners.

It took me years to be diagnosed with FMS because I didn't complain about pain. I didn't even consider the way my body felt every day to be worth mentioning.

This is also true of many female friends I have with FMS and other pain-related illnesses.

On the other hand, there are people with FMS who are the opposite, who were born with very sensitive bodies and experience pain intensely. Given how painful FMS feels to me, I can only image the hell on earth it is for someone who is hypersensitive. If you are one of these hyper-sensitive people, then my heart goes out to you, and please use the example of "your friend, Miss Chronically Fabulous, who has a high pain tolerance" to refute any suggestion that you are overreacting to FMS pain.

Those of us 'tough girls/guys' with chronic pain conditions may have certain things in common.

First off, some of us were born with less sensitive nervous systems (read Dr. Elaine Aron's "The Highly Sensitive Person" for a great non-medical description of the difference in nervous system response from birth.) That gave us a genetic advantage to dealing with pain (though as Dr. Aron points out, there are other genetic advantages to being sensitive).

Second, a lot of us grew up in families that prized toughness and did not pay any attention to complaints about pain. Friends have described this in various ways: "I grew up on a farm," "My family is hard-drinking Irish", "I was the only girl in a family of boys" -- regardless of the outer conditions, from an early age we were taught to ignore aches and pains and injury. We might have been ridiculed for "whining" or rewarded for gritting out teeth and playing through the pain. I'm not saying this way of child-rearing was a good or bad thing, just that from an early age the response we got from our immediate role models shaped how we internalized pain signals, and we learned to keep our mouths shut. It became an automatic response that we didn't even realize was going on.

Third, some of us spent years in physical training which further taught us to ignore pain. We enlisted in the military, went through basic training and served in difficult conditions. We were ballet dancers (forget the tutu - in terms of pain and injury, ballet is on a par with rugby.) In my case, I spent years studying martial arts, desensitizing my body to pain.

So when we tough types got FMS, we didn't report the pain. We kept our mouths shut for years. We were embarrassed to admit that we were unable to overcome the pain on our own. We still under-report our pain levels because we don't want to be 'wimps.'

So, when WE say FMS hurts, then dammit it IT HURTS!!!!!

Of course, it takes way too long to explain all of this to the person who is standing before you, accusing you of just being too sensitive (while they, of course, are implying that they are not so sensitive). So it's time for the Emotional Kung Fu move of the day: The Block.

Sometimes the quickest response to an attack is a simple direct block. More effective than flailing away and taking hits. Throw a strong block in the way of the attacker, and they may very well retreat, confused. This gives you an opportunity to let them know that you are not going to let them continue to attack you, to set some boundaries, or to walk away.

If the "attacker" says something along the lines of, "You know, the rest of us have aches and pains too, we just keep going," then you can block like this: Raise your eyebrows, roll your eyes, or just smile kindly and knowingly to show how you can see through them and say, "Everyday aches and pains? Please! If you had Fibromyalgia pain, you'd be curled up in a ball, screaming and sobbing and mainlining Oxycontin." Then just brush them off and walk away, or turn back to your magazine or whatever - the conversation is over. Generously give them some time to think about it, and maybe they will think about the kind of pain you are really in.

Hugs to all of you, Chronically Fabulous

Fibromyalgia Fever Dreams

In a really bad 'episode' of Fibro, I am incredibly fatigued and my body feels like achey and feverish as if I'm fighting off the flu. I lie in bed and drift off to sleep for a few hours. Then I'm awake again -- severely fatigued -- but lying awake. My mind is awake but my body is still too tired to move.

This is when the Fibro Delusions begin.

In my Fibro Delusions, time seems to move SOOOOO SLOWLY while I am in bed, and so meanwhile I start to believe that I could get SO MUCH done if only I were able to get up. The longer I spend lying around, the more it seems that if I were well, I would have been a whirlwind of productivity and nothing could stand in my way.

This is the Mind-Game that FMS plays on us. To believe that FMS is the only obstacle, the only thing stopping us from achieving the impossible, and that every other able-bodied person is an overachiever by definition. The mind always moves faster than the body, and when only the mind is moving, untrammeled by the physical body, then everything goes by in a blur of imagined activity.

Every individual's Fibro Delusions take on the attractive form of the creative works that individual most fantasizes about accomplishing. In bed, trapped in their own minds, some compose symphonies, some film Oscar-worthy movies, some write novels. My mind runs to business, so in my fantasies, I am creating and marketing a creative new product or service.

In the first few years that I would get these delusions, the crazy fever dream voice would say, "Come on, you can at least write all this info down -- later when you are well, you will have started this project." I would drag myself to my computer, and try to write an outline, but just the effort of holding myself upright and trying to organize my thought would have me keeling over at the keyboard until I had no choice but to drag myself back to bed before I ended up falling asleep on the office floor.

Now, I still can't turn away from the illusions of the fever dreams, but at least I know they are illusions, so I confine myself to silly business ideas, that I can at least recognize as humorous and so just amuse myself instead of torturing myself with the ideas that will never come to fruition.

I post them here just in case someone else comes up with the idea, and I can document that at least I thought of it first.

First my brain, goaded by my constant fear that I am losing productive time when I am sick and therefore will be in financial disaster when I wake up, tries to come up with ways that people will pay me for doing what I would do anyway. Here we go:

Idea One: "The Coffee Kids"
Did you know that some pseudo-celebrities are paid huge amounts of money just to show up at certain nightclubs, because their being there makes it a "hot spot" where other people will be clamoring to spend their money? Ergo, with all the coffee houses competing for your java cash, what makes one place more hip than another? Enter the "coffee kids" -- the attractively dressed, sparkling coffee-drinkers who will sit in the window of the coffeehouse, chatting, writing poetry and drinking coffee. By positioning myself and a cadre of my cutest, funest friends as the new "coffee kids", I'll get paid for showing up at a coffeehouse and drinking a latte for all to see. Let's see, if I collect $150 per appearance (to start out), and I drink 3 cups of coffee a day...... my troubles are over. Then add in product placement by carrying a cup with a logo on it, and licensing fees from all my associates...... bingo.

I fall back asleep for another 3-4 hours, relaxed to know that my money troubles are solved, just as soon as I feel well enough to drink coffee again.

I'm awake again now, tossing and turning in a pool of sweat. But actually what has woken me up is shivering.... I've got alternating chills and fever. It is a distinctly un-sexy situation. But sex sells, doesn't it? I have to find some way to tap into the lucrative adult-products market. Ah, here we go..... a line of licensed celebrity talking vibrators. With every celebrity living or dead licensing their voice to phone calls and products, and the cheap production of audio chips for greeting cards and mass-produced molded plastic adult products. Now we just need a celeb with a large female fanbase...... Elvis! Imagine "The King" model serenading you intimately with "I'm all Shook Up." That should be good for a couple million on the novelty value alone.

I fall asleep before the bottom falls out of the market (not a good visual image for that product line.)

When I wake up, I'm hungry. What did I eat today? Um, 8 oz of rice milk at 3 am. That should explain the sticky taste in my mouth. I have a bottle of water by my bed, which I drink to try to rehydrate. I keep bottles in the fridge for moments like this, when my hands shake so badly and my muscles jerk around so that I keep dropping things. The water isn't enough. I stumble to the kitchen, feeling even colder all covered in sweat. I know I won't clean anything up, so I look for the easiest thing to eat. Peanut-butter straight out of the jar? No, that's what I ate all day yesterday, the spoon is still there. Try to push harder: I'll open a can of vegetable soup. Get some nutrients. I open the can with a can opener. How did I manage to spill that much? I drop a napkin on the mess. This should be reheated in a pot, but the last time I did that I fell asleep while it was cooking and it all burned. I take a fresh soup spoon and eat the soup room temperature out of the can. It is disgusting. Now I remember why I ate the peanut butter yesterday. I set everything back down on the counter, trying not to think about all the clean-up I'll have to do when I feel better.

Back in bed, I lie there wishing I had the energy for a shower to rinse off the sweat. Later... later... later I'll be able to do anything, once I'm well again.

Several days later, I'm back to as healthy as I get. It's taken me a few days to clean the house up again and feel back to somewhat normal. Then, I sit down at the computer to write this post. Just typing without editing (all I do here) takes me 45 minutes.

Sigh.... I'm back in Real Time now, where physical creating takes longer than thinking. I almost wish I were back in the confines of my fevered brain, where I can make anything happen.

"What Do You Do?"

The standard American question when meeting someone for the first time is "What do you do?"

It's the question I dread now, that I am fully disabled.
"What do you do?" really means, "What is your job title?" and depending on your answer, you will be ranked and classified based on status and coolness.

This is the question I dread now, that I am fully disabled.

I can use my previous job title: "I'm an attorney." But this is inaccurate and just leads to another set of questions about where I work, and if not, am I looking for work..... all answers that lead back to explaining disability.

I can say, "I'm on disability" but this comes with the inevitable loss of status and distancing.

I can fudge and say, "I'm a writer," which is sort of true, and besides most writers are always working on some big opus and you don't expect it to be published or readable soon.

I can lie outright and just say something ridiculous, because nobody will ever know the difference. "I work for Homeland Security. Sorry I can't tell you more." But I'm not a good liar.

Lately I've taken to saying fake job titles that are true to describing my condition.
"I'm a stay at home mom." OK, I'm not married and I don't have any kids -- but why should that preclude me from having this job title? I'm a pioneer, breaking down that false barrier!
"I'm a circus ringmaster." Not literally, but that's how my life feels a lot of the time.
"I'm a healthcare researcher." Well, I do spend a lot of time doing this, and I know a lot. It's not my fault that the doctors refuse to pay ME for contributing to their knowledge.

If anybody with a disability has a better way to cope with the "what do you do?" question, please let me know.

Perhaps I will take to saying, "I'm a Disability Activist." Because that's like saying, "I'm on disability -- and I'm not apologizing for that fact!" Fair warning.

Help -- I caught the holiday spirit!!!

Usually when I am blog-silent for a while, it is due to my getting sick, either with the primary FMS or a secondary infection that my messed-up immune system was unable to ward off. But in this case, I've been gone for nearly a month and I'm going to blame it on catching something I've never caught before -- the Christmas Spirit.

I'm kind of embarrassed about this. Not to be a Scroogette, but I thought I was too cool for Christmas -- not the religious holiday, which I observe, but the public fuzzy feel-good festivities with their tacky red and green color scheme. But this year, I caught the generosity-gratitude-hope spirit of the holidays.

And it knocked me speechless.

I do have a lot of things I believe in fervently and take seriously -- religion, love, kindness, justice -- but let's face it, writing about that stuff comes off pompous and boring. Most times when the beauty of the universe moves me to tears, it's just a side effect of medication or a symptom of PMS.

My credo is: if you don't have something sarcastic to say, then don't say anything at all.

My gosh, it's really hard to write with absolute sincerity about kindness and love and hope without sounding like an idiot. I was afraid that if my friends who have known me for years read me babbling about the stuff that has touched me over the past year, it would be so out of character that they would assume I was having a nervous breakdown and have me committed.

I don't know how to write about the things that really touch me without somehow cheapening them. Anything I say in love and gratitude seems inadequate. All I can do right now is write a list and hope someone else can fill in the blanks:
  • Little old ladies (and men) who use their meager Social Security checks to feed homeless animals are the unsung heroes of our communities
  • Sitting writing my Christmas cards, I was overwhelmed by how many people I really missed and wanted to connect with, many more than I had energy to send cards to
  • I am so lucky to have friends and family who care about me and help me
  • So many people tell me stories about their own illness, or caring for a loved one with an illness -- and I am amazed at their grace and bravery and generosity
  • And, like many Americans, I was moved by the unlikely hero Brenden Foster (whose video you have probably seen, but I am reposting it again in case you have not)

Last deep thought of the season: Puppies are cute!

Whew, hopefully the fever has passed and I can get back to my usual griping again.

Happy New Year everyone

The Courage To Nap

When I tell people about getting the horrible diagnosis of a serious illness, a lot of time they respond the way that people respond to cancer or other short-term illnesses.
Trying to be encouraging, they say stuff like this:

"You've got to FIGHT the illness
You can't LET the illness WIN
Don't GIVE UP, Don't let this diagnosis prevent you from doing anything you want, climbing any mountain......
TAKE CHARGE of your health and medical treatment, ADVOCATE for yourself, RESEARCH treatments, DEMAND better health care....."
(and then a whole bunch of stuff I'm supposed to be doing, like....)
"You've got to exercise, cook all organic foods, do this treatment, that treatment, the other treatment....."
and my personal favorite "Give 110% until you BEAT this illness"

Whew! I'm tired just thinking about all that activity, all that fighting, beating, resisting, struggling. And then when I just look sad and overwhelmed and guilty about all the stuff I should be doing, I'm afraid I come across as "giving up."

It's one more pitfall of living in our Work-Ethic, No Pain No Gain, Never Give Up society. We live in a society that FLAUNTS struggle as a status symbol.
Just by not visibly engaging in sweaty, struggling effort, we risk being labeled wimps, or losers.

Unfortunately this is a very troubling thing for Fibro and CFS patients, because a lot of getting better is learning to relax, let go of expectations, and get enough rest. Whereas overworking is a major trigger of a relapse that makes us even sicker.
But we feel guilty about resting, so we push ourselves to exhaustion and then relapse. But at least then we are giving 110% -- literally more than we can, and borrowing energy we don't have.

There is a real shortage of role models for resting and relaxing.
There is a shortage of slogans that make resting and relaxing a good idea.
Actually, I think Dave Barry, that comic genius said it best, although he was talking about baby boomers getting older. So I'll just quote from his book, page 176 of Dave Barry Turns 50.

"It would help if the people who produce our popular culture would make an effort to portray napping in a positive light. Let's take the standard scene from an action-adventure movie, wherein two ruggedly handsome action heroes discover a bomb with a detonator counting down. [...] There is no reason why it could not be rewritten as follows:

FIRST HERO: Christ, there's enough explosives here to destroy half the city!
SECOND HERO: And the timer says only ninety seconds left!
FIRST HERO: Great! We have time for a brief nap!
SECOND HERO: Good idea! By napping now, we will remain ruggedly handsome that much longer!
(Dramatic music plays as we see the two heroes inflating small portable air mattresses.)

How can I make resting seem sexy again? Here are my theories.

1) I want to invent SuperFibroWoman, the comic book SuperHeroine. She dresses like Wonder Woman, except she's chubbier and she doesnt' have time to get her hair done, so she just wears a ponytail and no makeup. She's slower than a slow pitch softball, she's stronger than a toddler.... she's SuperFibro, and she always saves the day.... eventually.

2) I want some new slogans, yelled by a Drill Sargeant, or maybe chanted by a cheerleader.
Such as "Get out there and give it 75%!!" or "R-E-S-T, find out what it means to me!" or "Snooze like you mean it!"

3) I'd like to see some big screen movies in which the hero or heroine has Chronic Fatigue. Maybe a private eye who solves crimes in his sleep? Played by Leonardo DiCaprio, of course.

Meanwhile, I am going to make an effort to encourage people to take it easy. Next time, when someone says, "sorry the house is a mess" I'm going to respond, "Wow, I admire you for letting go of perfectionism" and when they say, "I'm tired," I'll say, "Go rest then, I'll still be here when you are done." Maybe, people will think I'm a weirdo or possibly a pervert. But maybe, just maybe, we can start a social movement that makes napping cool again.

Queen of Denial or Royal Pain?

My friend Rebecca, who blogs at Chronic Town, said to me a while ago,
"Denial gets a bad rap.... what's so bad about denial as a coping mechanism? If I wasn't in denial about how desperate my situation is, I think I'd give up and die."

Facing the full reality of my illness is my personal spiritual project.
It's the Zen meditation of looking at something dispassionately without reacting.
Or, for my spiritual orientation: "The Truth Shall Set You Free."

Also, I see the unhealthy impact of denial on many people with Fibro. Denial about the seriousness of the illness leads the patient to avoid filing disability claims. Denial about the impact of the illness leads the patient to overexert and then suffer a relapse the next day. Denial about the lack of a cure leads the patient to waste precious money on scam treatments. I feel bad for all the stress caused by fighting reality.

It is my lifelong belief that if you want to improve anything, you have to first look at the situation directly, accurately, in full, and understand what you are dealing with.

So, I determined to take full stock of my Fibro symptoms and the effect on my life.

What the Hell was I thinking???!!!!

Just as Rebecca said, it's a certain amount of denial that gets us through the day.
The full impact of how devastating this illness is, is just too much to bear all at once.

One of the first things that my doctor told me to do, is to make a list of all of my symptoms, how often I get them, and a history of past illnesses and injuries.

30 minutes into this list, I read over it, and I just about curled up in the fetal position sucking my thumb.

That's my life? OMG, why go on!

I put the list aside, incomplete, and didn't look at it again for 2 years.

So much for me being the Queen of Facing Reality.

I guess I've revised my belief about facing reality.

Once again, the answer is to be gentle with oneself. Fibro patients like me need to re-learn a lot of push-hard, tough, no-pain-no-gain behaviors. Fibro patients need to rest before they get really sick. Fibro people need to exercise a little, not so much that they go for the burn and are in pain the next day. And, I'm adding to that: Fibro patients need to deal with their illness, only as much as they can handle.

It might be good to make a list of symptoms to take to the doctor.
On the other hand, it also might be good to spend the afternoon reading a guilty pleasure beach book, or watching a goofy escapist movie.

Facing Reality should only be undertaken with the proper protective gear: a pair of rose-colored glasses so your Reality doesn't burn out your retinas.

Chronically Fabulous, Queen of Denial

Suddenly, Everyone Wants My Body

So, a while back a psychologist friend quoted to me a study which basically proved that most of the time, when a woman notices a man looking at her, she feels self-conscious, whereas when a man notices a female looking at him, he concludes, "she wants my body."

Yes, ladies, when you look at some guy, thinking, "Should I tell him he has mustard stains on his face?" he probably thinks you are checking him out.

My psychologist friend (again, sorry I don't have any quotes for this information) said that's probably the reason that men often have a higher level of self-confidence than women do.

Certainly, I could see how thinking "everyone is judging me" is bad for self-confidence, whereas thinking "everyone wants my body" could be good for self-confidence.

This concept came back to me recently when I broke my foot, and was on crutches. Suddenly everywhere I went, people were staring at me, and it made me very self-conscious. I started to feel judged and defensive. So I thought back to the psychologist, and decided instead to interpret each stare as, "he/she/they want my body". (To be truly egalitarian, I didn't limit it to just the opposite sex)

Yes indeed, this IS a morale booster! Since all the interaction happens inside your head, it's way more fun to choose "they want my body" over "they are staring because I'm disabled."

Sometimes the results are flattering (hot young guy staring at the cast on my foot - oh yeah, he wants me). Sometimes the results are disturbing (6 year old boy staring at me open-mouthed). Sometimes the results are just hilariously inappropriate (a trio of suburban moms pushing baby carriages all look at me as I struggle with a set of stairs).

I've decided to adopt this new, self-confident worldview whenever I start to feel self-conscious about my visible limitations. And I'd encourage anyone who has a visible disability to try this perspective out for a week and see how it feel.

Those stares at your wheelchair.....oh yeah, they want a sweet ride like that!
The long looks at your cane and braces...... Pure Lust!
Feeling self-conscious at the gym because you're not one of the low-body-fat elite? ..... Tell yourself they all want your body, and get on that treadmill and flaunt it!
And the way that people pointedly turn away or refuse to make eye contact due to your impairments? ..... it's jealousy! They can't face your sexiness!

Try it out, and see if it changes your mood.

Is there anything GOOD about Chronic Illness?

Spoiler: Yes, I did finally find something good, cool, and fun that has happened to me due to having Fibro.

I have been asked, "Is there anything good that came out of you having Fibromyalgia?"

(Usually, I hate this question, because most people use it as a 'trap'. If you find anything good, then they will follow up with 1) "See! You get good things from being sick so you don't want to get well!" or 2) "You needed to get FMS to make you a better person," - both of which are BS jerky answers.)

Usually my answer is Hell No! Anything positive that came about 'because' of the illness could have happened without getting sick.

I don't believe in the paradigm that people need pain or punishment in order to beat them into spiritual lessons.

Some people say that their chronic illness "made" them become more understanding of others, more patient with themselves, more spirtual. My reply is that the illness didn't "make" them, but that faced with the illness they made a choice to be a better person. Faced with a chronic illness, a person go either way. They can become more understanding of others, or they can become more narcissistic and think that their illness is the only pain that matters. The choice is the person's, and if they made a good choice, they should get the credit for their behavior, rather than crediting the illness, which is neutral.

But I have finally found something that is really wonderful, which happened only because I have Fibro.

I have met amazing, cool, creative, fun people ONLY because I met them in a Fibro support group or we reached out to each other because we both have a chronic illness. I have close friends that I cherish, whom I would never have met unless we were on the same bulletin board or attending the same group. I keep meeting more people who write to me because of my blog or on Myspace, because of chronic illness, and I look forward to meeting more, because THEY ROCK!

Yeah we initially connected because of Fibromyalgia, but I discover the fellow patient's wonderfully quirky sense of humor, their creative and artistic side, their compassion, their style, their wisdom, and I'm really glad I met this person.

I believe that if there were a miracle cure for Fibro tomorrow, we would all stay great friends. But we never would have met without Fibro.

Thank you all for being your amazing selves!

Oh yeah, and Fibro still sucks.

Emotional Kung Fu: the quick jab

Random New Age Jerk: "You have an illness because you are harboring negative thoughts, because you have anger or resentment. The mind is more powerful than any medication. Your body and immune system are perfectly capable of fighting off illness if you think positive thoughts. But if you can't overcome an illness it's because you are hanging on to the illness with negative thoughts."

Me: "Please go find some broken-hearted parents who suddenly lost their infant to S.I.D.S. and tell them that their precious baby was filled with negativity, anger and resentment, and that's why their little angel succumbed to S.I.D.S. when other parents get to experience the joys of holding their babies and watching them grow up. It will sure be a comfort to them to realize that it was their little baby's own negativity that resulted in her death."

If you don't have to deal with New Age Jackasses who try this routine, consider yourself lucky. (I've heard other patients complain about having to deal with Christian Jackasses who have a variant of this same attack, "If you really believed in Jesus, this wouldn't happen to you." It just shows that if someone wants to be a jerk, they will find some way to manipulate any set of universal beliefs to support their behavior.)

Here a person who is healthy, rather than counting their blessings and reaching out to the afflicted, instead congratulates themselves, and immediately judges that they are a better, more spiritual person and you are not, because they are healthy and you are not.

(Personally, I find this accusation of negativity REALLY irksome because I make a concerted effort every day to be pleasant and encouraging to the people I encounter, and not let the pain make me irritable towards others. It doesn't make the pain any less for me, but I figure just cuz I feel miserable is no reason anyone else should.)

This type of attack does nothing to help an ill person relieve the stress in their lives that could be making symptoms worse, nor does it help an ill person to practice positive thinking to overcome depression. Rather it creates separation, a New Age more-spiritual-than-thou pride, and snap judgments.

It's amazing what the "people who think positive don't get sick - people who are harboring negative thoughts succumb to disease" criteria tells you about the world.

People in Africa and Latin America are dying of A.I.D.S. at a devastating rate, and of a number of infections and diseases that are rare or unknown in the industrial Western world. So, apparently according to the New Age Jackass, those dark-skinned people are just really negative compared to us whiteys(?!?!) Who else is "negative"? I guess little kids with leukemia are "negative", because the illness got to them. Ted Bundy the serial killer was a healthy, athletic young man (until his untimely execution), so I guess he didn't have any anger, hostility or resentment as he butchered his victims. I'm sure you can add to this list yourself.....

If you have been one of these New Age Jackasses at times yourself, just know that telling someone to "be positive" and blaming them for the illness, does nothing to make them feel more positive. If you want someone to be more cheerful, then tell them a joke that makes them laugh, do something generous to put a smile on their face, or ... maybe.... even listen to their complaints without interrupting (shocker!) because everyone runs out of things to complain about eventually and even the very miserable eventually will get bored with complaining and want to talk about something cheerful.

Meanwhile, here's the Emotional Kung Fu move of the day...

The "quick jab" is a boxing move that is very useful to get someone to back away a little when they are attacking you. Perfect for this type of attack.

"Yeah, I do have anger and resentment built up, but the only anger and resentment I have is that I have to continually deal with jackasses like you!"

Side Effect: Weight Gain

The doctor smiles at me comfortingly.
"It's a very safe drug. The only side effect you might experience is weight gain."

Weight gain?! Now the doctor's smile just looks to me like a mocking idiotic grin.

"Wait, what about other options? Don't you have any drugs that carry a risk of brain aneurysm instead of weight gain? I'd take that! What about birth defects? Cancer? Come on, work with me here." Doc just chuckles at me. No such luck.

Damn FDA! Hey to a woman, weight gain IS a serious side effect. Every few months I get a new drug and along with it, another 15lbs to carry around.

When people say, "You don't look sick" - to me, I do look sick, because all that weight happened from various effects of the illness. And then combine that with being too sick to get out of bed many days - that really does a number on your metabolism. It's the law of nature - go into hibernation, come out with a body shaped like a grizzly bear.

For all of us who have been through this cycle with an invisible illness, we now have a new level of stigma. With fatigue, to the unkind world we look "LAZY." Now due to the drug effects, we look "FAT." Fat and lazy - just about the worst possible things to be in image-conscious, modern, workaholic American society.

Isn't it absurd that at a time when I am in pain, I can't work, my life is passing away before my eyes, that what I am really concerned about is weight gain? It just shows how crazy-making it is to be a female living in 21st century America.

Yeah I'd like to believe that it's just me, being a neurotic mess, but I'm actually less weight-obsessed than most women I know. I keep hearing the complaints about weight gain from women with so much to be proud of.

Many years ago in college, I went out to lunch with a woman who had just returned from a year of volunteer work in war-torn Bosnia, sheltering refugees and providing rape crisis services. She described a life of constant near-death experiences, dodging bullets and threats. With grace and humility, she related how she witnessed and comforted the victims of rape and torture. I was absolutely awestruck by her. BTW she was just drop-dead gorgeous in an old-fashioned way, voluptuous figure, cascading blonde curls, long lashes, etc. I asked her how she was dealing with returning home to "normal" life.

She said, "Well, I'm so ashamed, I have gained 20 lbs and I just feel like a loser for being so fat and not having control over myself."

Geez, shows where priorities are, huh? It doesn't matter if you are a cross between MacGyver and Mother Teresa, if you are overweight you are a loser?!

Meanwhile a male friend relates this story to me: A woman he works with has returned from a mission to Saharan Africa with a horrible wasting disease. She is under medical care. Her eyeballs are all yellow and her skin is wan. But she's thrilled that "now she can wear all those designer clothes she couldn't fit into before, and she (in her own words), thinks she looks great!"

It's crazy. I tell myself it's crazy, and I still worry about it.

Meanwhile I have this fantasy....

I'm back at the doctor's. He looks at me seriously and says, "Well we have this new experimental drug for chronic pain. It's just that it carries some risk of side effects. I have to warn you about this. You will lose 20lbs and all the hair in your legs will fall out."

I sigh dramatically. "Well doc, I'll take this new drug. As for the side effects.... well I guess I'll just be brave and deal with them."