Tuesday, September 4, 2012
You Don't Have To Beleive What You Think
I’m not going to pretend that on some level I’m not deeply, deeply bitter about not feeling well. It would be inhuman to not really hate it.
But I walked into a bathroom at my acupuncturist’s office in Phoenicia a few years ago, and on a piece of paper, attached to the mirror there was a piece of paper which read, “You don’t have to believe what you think.” It blew me over like a sandstorm.
Just because I feel I was robbed, and know I was robbed, doesn’t mean I have to believe I was robbed.
Anyone who’s seen basic parenting is aware of this contrast: Say you’re on a plane that’s clearly having mechanical troubles and a child is sitting next to you. Any wise parent doesn’t shout, “We’re all gonna die!” at the child. That would very likely result in an out-of-control little girl of boy, screaming, flailing, making the situation much, much worse.
A wise adult talks to the child patiently, puts an optimistic face on the situation, maybe even lies to them a little. The result is a calm child who understands the situation, maybe even better than we do, on some level.
What I’m saying is each of us has an inner child who wants nothing but to pound and scream at the unfairness of it all. But you don’t have to buy into the drama. You don’t have to think this way every minute of the day. You don’t have to live your life as though you believe this is the only truth, that you’ve been robbed, it’s all unfair and everybody hates you. Even if that’s what you think. It’s only one facet of your thinking. You are also wiser than that, and there is a higher level of thinking and consciousness you can tap into, to sooth, negotiate with, and train the inner child who wails.
Of course every parent loses it once in a while – that’s only human. Every now and then I think it’s healthy to give vent to those thoughts and feelings. But I do my best to let them be just that – thoughts and feelings – and not let them overwhelm the forward motion and general sense of belonging to my life.
Tuesday, November 30, 2010
Luck
What is luck, anyway? Do you believe in it? Is it random? Is it karmic? Does it come to you or leave you because you've been bad, or deliciously good?
Last month, the water heater & dishwasher at the house and my long beloved car all went *kaboom!* at the same time, which made for very interesting logisitics, (for instance, how do we get a water heater to the house with no car, when Lowe's delivers wayyy out here to Fleischmanns only every other Wednesday, the plumber can come Monday and we need to get back to the city by Tuesday?)
That very same weekend, we awoke at 4am one morning to the tippidy-tap of - what else - our roof leaking. apparently our "brilliant" fix to our miniscule - but now obviously significant - chronic waterway, which involves a plastic crate, needs to be emptied periodically. Who knew?
We thought that was lousy luck, but figured it comes with the territory of an old car and older house. We replaced the water heater, fixed the car, bought a new dishwasher and emptied the crate. (Goodbye, 2-3k there! And just when we'd started paying down that one credit card!!)
I made an offer on a house, which was to represent some future financial solidity. What a great deal! It was inspected (to the tune of $525). It has mold. lots of it. Among other significant and potentially expensive problems. That deal is currently in limbo.
The next few days, the ones leading up to our flying out of the country for a week, are when my dental work from a week back went awry.
Then Colin's camera was stolen literally right out from under our toes while were were sleeping on the paradise island of St. Maarten/Martin. Insurance would cover only $250 of the 3K to replace it. (Useful note - if your homeowner's insurance folks ask you if you ever use a stolen item for business use, say "NO!" Positively No! As if the photography "business" has ever made any money, or as if he never uses that camera for personal use! bah!)
We thought that was bad, but then Colin broke out in a rash from head to toe. I call it "camer-ation anxiety." Of course then it was Sunday when most pharmacies on the island were closed. Everyone thinks it's heat rash or sun rash. So let me get this straight; a boy grows up in Florida, to experience heat rash randomly at age 41? Now I'm seriously beginning to question this "luck" thing.
Then we came home. Four packages I need to make candles, etc. had been returned to senders, because the note on the front door telling carriers to deliver down the street seems to have been removed. (could that have been from the tornado which ripped through Park Slope last month?) On its way back to the sender, one of the boxes was destroyed by UPS and happened to be my supplier's LAST bag of palm wax until they get a new shipment. I am weeks behind on production for the holidays.
We've been home for 3 days, and today Colin's computer got a virus and, not surprisingly, I'm getting sick. I satisfied myself with a lukewarm, dirty shower this morning... now there's no water in the building and the toilet is - not how it's supposed to be. Thank the powers I'm home alone.
I was yet determined to be productive. Imagine my "surprise" when I got something out of the shelves (you know, those cross-grid ones from Target?) beside the kitchen sink and they alllll started tumbling down, the the little round thing which holds them together falling away next to the sink.
Imagine how carefully I supported the entire structure - all the way up to the things balancing across the tippy top - on two fingers, (veeery carefully, as one phalange was perched precariously on top of a long, serrated knife) while slowly removing objects from the shelves with my other hand, until it was light enough to lift one of the shelf walls where I needed it to be, then carefully picked out the round thing from the depths, reinstated it and reinforced all the corners.
Could it be considered *good* luck that I managed these acrobatics without complete disaster?
I sense a possible change in direction of the wind. But suspect we could use some help. A friend who's a witch has suggested I make a good luck herb jar (of course all my appropriate herbs are down the street with the lady who's sewing the wheat berry pillows, and she's out of town for another week.) You put these herbs in a jar, shake them, say this incantation and leave them on a windowsill every day. I tried reciting the incantation - really, I did -
To God and Goddess I do pray
Guide me through another day
Let good fortune come my way
Good luck hither now I say!
- but I think it could use some reinforcement. Anyone? say it with me now...
Last month, the water heater & dishwasher at the house and my long beloved car all went *kaboom!* at the same time, which made for very interesting logisitics, (for instance, how do we get a water heater to the house with no car, when Lowe's delivers wayyy out here to Fleischmanns only every other Wednesday, the plumber can come Monday and we need to get back to the city by Tuesday?)
That very same weekend, we awoke at 4am one morning to the tippidy-tap of - what else - our roof leaking. apparently our "brilliant" fix to our miniscule - but now obviously significant - chronic waterway, which involves a plastic crate, needs to be emptied periodically. Who knew?
We thought that was lousy luck, but figured it comes with the territory of an old car and older house. We replaced the water heater, fixed the car, bought a new dishwasher and emptied the crate. (Goodbye, 2-3k there! And just when we'd started paying down that one credit card!!)
I made an offer on a house, which was to represent some future financial solidity. What a great deal! It was inspected (to the tune of $525). It has mold. lots of it. Among other significant and potentially expensive problems. That deal is currently in limbo.
The next few days, the ones leading up to our flying out of the country for a week, are when my dental work from a week back went awry.
Then Colin's camera was stolen literally right out from under our toes while were were sleeping on the paradise island of St. Maarten/Martin. Insurance would cover only $250 of the 3K to replace it. (Useful note - if your homeowner's insurance folks ask you if you ever use a stolen item for business use, say "NO!" Positively No! As if the photography "business" has ever made any money, or as if he never uses that camera for personal use! bah!)
We thought that was bad, but then Colin broke out in a rash from head to toe. I call it "camer-ation anxiety." Of course then it was Sunday when most pharmacies on the island were closed. Everyone thinks it's heat rash or sun rash. So let me get this straight; a boy grows up in Florida, to experience heat rash randomly at age 41? Now I'm seriously beginning to question this "luck" thing.
Then we came home. Four packages I need to make candles, etc. had been returned to senders, because the note on the front door telling carriers to deliver down the street seems to have been removed. (could that have been from the tornado which ripped through Park Slope last month?) On its way back to the sender, one of the boxes was destroyed by UPS and happened to be my supplier's LAST bag of palm wax until they get a new shipment. I am weeks behind on production for the holidays.
We've been home for 3 days, and today Colin's computer got a virus and, not surprisingly, I'm getting sick. I satisfied myself with a lukewarm, dirty shower this morning... now there's no water in the building and the toilet is - not how it's supposed to be. Thank the powers I'm home alone.
I was yet determined to be productive. Imagine my "surprise" when I got something out of the shelves (you know, those cross-grid ones from Target?) beside the kitchen sink and they alllll started tumbling down, the the little round thing which holds them together falling away next to the sink.
Imagine how carefully I supported the entire structure - all the way up to the things balancing across the tippy top - on two fingers, (veeery carefully, as one phalange was perched precariously on top of a long, serrated knife) while slowly removing objects from the shelves with my other hand, until it was light enough to lift one of the shelf walls where I needed it to be, then carefully picked out the round thing from the depths, reinstated it and reinforced all the corners.
Could it be considered *good* luck that I managed these acrobatics without complete disaster?
I sense a possible change in direction of the wind. But suspect we could use some help. A friend who's a witch has suggested I make a good luck herb jar (of course all my appropriate herbs are down the street with the lady who's sewing the wheat berry pillows, and she's out of town for another week.) You put these herbs in a jar, shake them, say this incantation and leave them on a windowsill every day. I tried reciting the incantation - really, I did -
To God and Goddess I do pray
Guide me through another day
Let good fortune come my way
Good luck hither now I say!
- but I think it could use some reinforcement. Anyone? say it with me now...
Monday, July 5, 2010
Got that Catskills Cravin'
I’ve been away so long I can’t remember which drawer is for socks and which is for underwear. I unpack in a fumbling daze, car weary and heat-stricken. And this, I think dejectedly, is only a break from unloading heavy crates of candle gear up four flights of stairs from the car, a duty which can’t be delayed much longer since it’s 100 degrees out, and god knows what inside the solar heated vehicle. Even palm wax has its limits!
I can’t believe last night I slept under two blankets, sans air conditioning. Only a screen door, which opens to the best stargazing rooftop balcony ever, remained a few inches open to freshen the room with poofs of 67 degree air all night and the sound of melodious bird calls in the pre-dawn chill. I’ve become so familiar with the flying critters of our neighborhood upstate I’ve started to name them – “Geiger” is what Colin dubbed the tireless woodpecker across the street, because his incessant pecking sounds like a radiation detector. “Shaggy” is what I call all 4 blue jays, because while I can’t tell them apart, all sound appallingly like Shaggy’s outbursts of “ZOINKS” on Scooby Doo.
67 degrees. Let me spell that for you: Sixty-seven. That’s fully twenty-one degrees cooler than it was in Brooklyn last night. I can’t believe we’ve chosen to come back. Ever. As we drove South I told Colin I felt like we were descending into the bowels of Hell. Traffic, humidity and heat all intensify as we approach Manhattan, where I drop him off for a rehearsal for the Classical theater of Harlem.
It’s not just the environment. Once home, I know I must take the sheets and towels used by two sets of subletters down the stairs and to the laundry in the sweltering heat, unearth the stash of sensitive papers we keep hidden so deeply it’s even hard even for us to find, and, worse, get to all the desk work I’ve been putting off, because every last page of it has to be dealt with here, as opposed to there for some reason or other, access to my files being prime.
Sorting through receipts and returning calls to doctor offices is a drag everybody hates no matter where you do them from. But a surprising truth has emerged in our many trips to our Catskills getaway – for some reason we both hate it less when we’re there. Why?
At first we thought it was just that we had each brought a limited amount of annoying stuff to deal with. Each time we finished a duty, there wasn’t an endless, unkillable pile of more paper staring us in the face, rising up to meet us like Zombies.
But as our visits to the Catskill Mountains turned from days to weeks, and more and busywork managed to chase us up the throughway and into the “vacation” house, we realized some other potent facts:
One: Using the dining room table as a desk, each of us gets roughly quadruple the usual size of horizontal surface for our deskly duties. Two, windows. We’re surrounded by three sun-filled windows, each with a distinctly different view – flowering side yard, towering trees, and sprawling deck, (in order left from right, from my side.) Three: The deck.
And beyond. Instead of catching some TV or noshing some chocolate for a break, I do yoga on the deck and ponder the sight of squirrels running along the railing. Colin takes a bike ride. We go on a hike. Wonder what the babbling Vly creek has to say today, and if it’s interesting enough, go swimming in it. Or visit the public pool a block away. In the winter we watch it snow.
I keep learning anew how far more deeply energizing it is to be in daily commune with nature, than not. I need less naps. My pain levels go down. I get less infections when we’re up there. It’s like my body says, yes, this is how you are supposed to live. Stop making those damnable drips down into hell!
I’ve asked other people with fibromyalgia why they choose to live in New York City. I was genuinely curious. Knowing the city is hard on all of us – the extremes of heat, poor air quality, subways with mounds of steps, noise, clutter, a bedbug epidemic…why would anyone with chronic illness choose to live in a big city?
I expected answers like, the culture! The live music! So many free activities along the riverfront! Theater, art, restaurants, education, jobs. Architecture, shopping. Beauty of a diverse population. Or even, (as might be expected of a population with some mobility impairments) easy access to public transportation, not to mention services like meals delivered and vans for the disabled.
Indeed, New York is known as one of the greatest cities in the world. And I happen to live in the neighborhood recently voted by New York Magazine as the #1 neighborhood in the city. What grandeur, what brilliance, what excitement can you not get in New York?
Instead, every single person I asked said, “Everyone I know and love is here.” Or something like it. My grandchildren are here, my girlfriend’s career is based here, all my friends are here.
Oh.
So what keeps me here?
This is a question I ponder at least a little every day. Sure I have good friends here, but New York isn’t the only place I have friends. And of course one can always make new connections. Colin is here, but we’ve thoroughly enjoyed the times in our relationship when it’s been long a distance one (except for the fact that for a normally socially bright guy he’s uncannily horrible at making phone conversation.)
What about career? Of course I moved here for that. But I haven’t had energy to do much more than make a living for several years now. I find whenever I do get involved with a show or musical enterprise I spend the next months in an avalanche of serial infections. And then there’s getting work - how I hate auditioning over and over again, like a wind-up doll.
Now, I’m not a New York hater, like some people I know, ahem my Dad. It’s said we hate what we fear, and we fear what we do not know. In my experience, most people in the middle of the country (referred to by an equally ignorant population of New Yorkers as “the fly-over” parts) have labored under a pile of myths and misconceptions about the Big Apple their whole lives, some of which perhaps were true at some period of history long-gone, but most of which are just a lot of hogwash. People are unfriendly, you can’t walk in Times Square without getting mugged, you can’t park a car in Manhattan, there’s a terrorist attack every week. Pish-posh.
I feel responsible to point out The City is truly an incredible place. Think of it: millions of people from different countries, races, creeds and colors, all living peacefully under the rule of democracy. It’s the epicenter of the proud tradition of the American melting pot. Music, finance, science, art and a million dreams come true, some not so true. Absolutely endless opportunities to learn, educate and improve yourself.
Wanna take a course on International Affairs? Attend a lecture on personal branding in social media? Want to jam with other musicians at an open mike, watch a movie outdoors with a thousand other people who like The Princess Bride as much as you do, or eat yourself around the world on one block of eateries? How about savoring what the latest fashionistas have to offer, taking a tour of the Holocaust Museum, or seeing real work of Picasso’s at the Met?
It’s all here. Not a thing missing. Except Geiger, and the trees, and the – nothing- I appreciate so much in my mountain haven.
So why not move my files there, as opposed to here? Then I could pay all my bills, answer all my correspondence, organize all my referrals within view of Nirvana! I’d open the windows wide, play my guitar on the deck, swim in mountain streams and make up songs between spates of work. Why not?
Come to think of it, why doesn’t everyone just pick up and move to their ideal climate? You’re in the Midwest but you hate the cold. You live in Alabama but love to ski. In today’s movable feast of flexible arrangements, why doesn’t almost everyone, at some point, just pick up and move to their Heaven?
Why don’t you?
Saturday, February 27, 2010
Living within the Envelope
Know how sometimes someone else says it so much better than you ever could? This woman speaks so effectively about her path to discovery about what makes her feel well. It amuses me how over-achievers sometimes shoot themselves in the foot...
Living Within My Envelope: A How-To Story
By JoWynn Johns
[Note: The following article was written in November, 1998 and published in the March/April 1999 CFIDS Chronicle, the magazine of the CFIDS Association of America. The author is a graduate of the CFIDS Self-Help course. Before becoming disabled with CFIDS in 1993, she had developed a management consulting business following 25 years as a corporate executive.]
In a study of the "envelope theory" reported in The CFIDS Chronicle, Fall 1997, the researchers found that individualized treatment programs can help PWCs [People with CFIDS] achieve their optimal level of activity and manage their illness more effectively. "Living inside the envelope" sounds easy, but it hasn't been for me. Seven years I've had CFIDS and only now am I finally, mostly, living inside my envelope. It's been an arduous process of discovery and letting go.
Phase I: Keeping on with my life
When it comes to CFIDS, I am definitely a s-l-o-w learner. From early 1991 I was having increasing symptoms. Despite feeling awful, I continued my busy life. Convinced that exercise must be good for what ailed me, I was still working out five days a week. By mid-1992, though, it was getting harder and harder to carry on. I took more vacation time hoping that would help but without result. Neither daily meditation nor shiatsu massage helped, though the latter felt wonderful.
Phase II: All-out effort to get well
In January 1993, I finally collapsed, unable to stay upright. But did I stop "working"? Oh no; I simply transferred all my drive, determination, and ambition from earning a living to getting well. I tried everything that made sense to me, but made myself sicker in the process. For example, as soon as I had recovered a bit from that first crash, I resumed daily exercise, though I gave up running. I tried "power walking" an hour every day for several weeks until I collapsed again.
Thus began a pattern of exacerbation, forced rest, remission, return to activity, exacerbation, and so on. Between 1993 and 1997, I tried yoga, intensive meditation and visualization exercises, but experienced worse symptoms. I tried homeopathy with no result. I tried eating my main meal at noon and going to bed by 9:00 p.m. with no improvement in sleeping. I tried elimination diets; no change. I tried a macrobiotic diet, and had a bad exacerbation. Anti-depressants brought new and worse symptoms. Sleeping medications and melatonin magnified my sleep disorder.
The only thing that relieved my symptoms was bed-rest, but I couldn't believe I was sick enough to have to stay in bed. Over and over, as soon as I recovered somewhat, I tried to live a normal life. Little by little, though, I was being forced to reduce my activity further. I stopped house-cleaning. Then I stopped cooking. I stopped taking walks and I stopped shopping.
I became convinced that none of the strategies or treatments to which some people with CFIDS attributed their recovery would work for me. Gradually, I was shifting my focus from seeking to learn from others to paying more attention to myself and my own experience. And I stopped striving to recover. Instead, I began to pay more attention to myself and to listen to my body.
Phase III: Learning from my own body and experience
In February 1996 I broke two bones in my foot and was in a cast from my toes to my knee for seven weeks. The combination of heavy cast and lack of the strength immobilized me. Months later, when I was trying to make sense of my records, I realized that I had felt better during and for a few weeks after my immobilization than at any other time for over five years. That's when I decided I was going to find out, by carefully watching myself and keeping systematic records, what I had to do to feel better. Until then I had been recording my symptoms and noting when I felt worse. But in the fall of 1996 I decided to change the emphasis, vowing to identify the conditions associated with feeling better.
I began by developing my own definition of a "good" day. A good day for me is one in which I have minimal fatigue, muscle aching, or IBS--my most frequent symptoms; have no other symptoms from my repertoire of twenty-some; do not over-eat, which I'm driven to do by the drained emptiness of fatigue attacks; take a walk; and do artwork.
I also decided to focus on "good nights" as well, since sleep disorder is perhaps my most difficult problem. Lying awake for hours every night is harder to cope with than most other symptoms, it has persisted over time and it exacerbates other symptoms. Over time I discovered that if I stayed in bed, eyes closed and resting, long enough, I could usually get about seven hours of fragmented sleep. And when I got seven hours of sleep, I felt better the following day. I concluded that a good night was one in which I slept at least seven hours total; had refreshing sleep; and could lie awake resting peacefully, not agitated and frustrated. (A meditation practice and an eye pillow help tremendously. Even so, it took months to train myself to lie still while awaiting sleep.)
Good days and good nights are interdependent. After a good night, I'm more likely to have a good day. On days when I stay within my envelope, I'm more likely to have a restful rather than agitated night. Since I dread bad nights even more than bad days, this was a further incentive to discover my limits.
So then I asked, what do I have to do to have good days and good nights? After studying my journal and notes, I concluded that I must spend at least twelve hours a day in bed, resting, meditating, and sleeping; get at least seven hours of sleep; stay at home; restrict my daily activity to personal hygiene, climbing two flights of stairs in our three-story house, and walking about a mile; care for houseplants only when able to; work at the PC no more than an hour at a time; have no visits or long phone conversations; and do artwork.
This is my envelope. Staying inside it, I have the least fatigue and other symptoms and I feel as good as possible. That doesn't mean I don't exceed these limits. I do, and I pay for it.
Phase IV: Developing a feedback system
Having established criteria for good days and nights and having clarified what I need to do to achieve them, I then worked out my record-keeping system. I use a monthly planning calendar with two-inch square blocks for each day on which to indicate the good days and nights. I also note my activities and symptoms each day. Color coding with hi-liters enables me to see readily how I'm doing during the month. I find this kind of visible feedback motivating. I want to do what I have to do to show more violet (good) days and nights.
To see trends over the year, I graph my monthly percentages of good days and nights. On a calendar for the year, I put colored dots to show the days on which I experienced stress--visits, phone conversations, unusual activity, or other exertion. The correlation between clusters of dots on the calendar and the ups and downs of the percentages of good days on the graphs is very apparent. I also chart my sleep pattern daily. I needed to make this information visible to prove to myself the effects of mental and emotional exertion, as well as physical activity.
I also wanted concrete evidence of the effects of staying inside my envelope. Because limiting my life in this way is so very hard for me to do, I had to show myself that it was worth it.
Phase V: Accepting my envelope
Analysis of several years' notes showed me that mental and emotional exertion provoked symptoms as much as physical activity. In fact, I may suffer more symptoms following an hour's conversation than after walking in silence for an hour. It's not that I had never noticed the effects of being around people. It's that this is not a fact I wanted to admit.
For several years, while cutting back on physical activities, I could not accept and acknowledge my intolerance for interacting with people or the physical pain I have after mental exertion. I was not prepared to give up visits, especially with grandchildren, and phone conversations with family and friends. I didn't want to limit my work at the PC. Doing so for the past year, though, has shown me what a difference solitude, silence, and inactivity make in my well-being. Fortunately, my loved ones are supportive. Fortunately, too, and to my surprise, I have found how contented I can be in seclusion.
This is not a prescription for anyone else. It is simply what I have learned about what I need to do to feel better.
Results
So how am I doing? In 1996, a retrospective analysis showed I had 36% good days. In 1997, I aimed for over 50% good days and achieved that. My experience in 1998 has not been as good due to the stress associated with my Social Security Disability Insurance claim (which was finally granted almost three years after my initial application) and a major relocation from our home to a retirement community--a great change in living situation. Nevertheless, I have had three months this year of better than 70% good days, so I know what's possible.
My records for the past three years assure me that I am finally doing what I have to do to accommodate CFIDS. More importantly, during this period, I have had eight separate months with over 60% good days and I can account for the bad months. I know what I did or what happened that exacerbated my symptoms.
I've also learned that it is possible, by staying inside my envelope consistently for weeks at a time, not only to have no crashes, but to have exceptionally good days when I feel almost well. I've achieved more stability; I'm less victimized by the turmoil of the exacerbation-remission roller coaster.
Summary and Conclusions
In summary, I have established my own criteria for assessing my days (and nights, because nights are so problematic for me) so that I could identify good ones. I clarified what I have to do to have good days and nights. In other words, I described my envelope. I developed a record-keeping system (calendars, graphs, and charts) that help motivate me to stay inside my envelope. As a result, I am feeling much better and I am living with CFIDS much better.
As I review my story, I ask "Why could I not see for so long and accept what I had to do?" I think it's because it was so hard to make feeling good my top priority. Believing I should just soldier on no matter how I suffered, I was not able to insist on what I needed to make me feel better. I was not willing to make the changes, to give up so much that was dear to me and central to my self-image. I wanted and was determined to continue my normal life when CFIDS was insistently demanding that I live differently.
To feel good, I have to be so unlike myself: self-indulgent, irresponsible, lazy. It seems clear to me now that living "normally" is not good for me, but I also know that I can live well with CFIDS in body, mind and spirit.
Living Within My Envelope: A How-To Story
By JoWynn Johns
[Note: The following article was written in November, 1998 and published in the March/April 1999 CFIDS Chronicle, the magazine of the CFIDS Association of America. The author is a graduate of the CFIDS Self-Help course. Before becoming disabled with CFIDS in 1993, she had developed a management consulting business following 25 years as a corporate executive.]
In a study of the "envelope theory" reported in The CFIDS Chronicle, Fall 1997, the researchers found that individualized treatment programs can help PWCs [People with CFIDS] achieve their optimal level of activity and manage their illness more effectively. "Living inside the envelope" sounds easy, but it hasn't been for me. Seven years I've had CFIDS and only now am I finally, mostly, living inside my envelope. It's been an arduous process of discovery and letting go.
Phase I: Keeping on with my life
When it comes to CFIDS, I am definitely a s-l-o-w learner. From early 1991 I was having increasing symptoms. Despite feeling awful, I continued my busy life. Convinced that exercise must be good for what ailed me, I was still working out five days a week. By mid-1992, though, it was getting harder and harder to carry on. I took more vacation time hoping that would help but without result. Neither daily meditation nor shiatsu massage helped, though the latter felt wonderful.
Phase II: All-out effort to get well
In January 1993, I finally collapsed, unable to stay upright. But did I stop "working"? Oh no; I simply transferred all my drive, determination, and ambition from earning a living to getting well. I tried everything that made sense to me, but made myself sicker in the process. For example, as soon as I had recovered a bit from that first crash, I resumed daily exercise, though I gave up running. I tried "power walking" an hour every day for several weeks until I collapsed again.
Thus began a pattern of exacerbation, forced rest, remission, return to activity, exacerbation, and so on. Between 1993 and 1997, I tried yoga, intensive meditation and visualization exercises, but experienced worse symptoms. I tried homeopathy with no result. I tried eating my main meal at noon and going to bed by 9:00 p.m. with no improvement in sleeping. I tried elimination diets; no change. I tried a macrobiotic diet, and had a bad exacerbation. Anti-depressants brought new and worse symptoms. Sleeping medications and melatonin magnified my sleep disorder.
The only thing that relieved my symptoms was bed-rest, but I couldn't believe I was sick enough to have to stay in bed. Over and over, as soon as I recovered somewhat, I tried to live a normal life. Little by little, though, I was being forced to reduce my activity further. I stopped house-cleaning. Then I stopped cooking. I stopped taking walks and I stopped shopping.
I became convinced that none of the strategies or treatments to which some people with CFIDS attributed their recovery would work for me. Gradually, I was shifting my focus from seeking to learn from others to paying more attention to myself and my own experience. And I stopped striving to recover. Instead, I began to pay more attention to myself and to listen to my body.
Phase III: Learning from my own body and experience
In February 1996 I broke two bones in my foot and was in a cast from my toes to my knee for seven weeks. The combination of heavy cast and lack of the strength immobilized me. Months later, when I was trying to make sense of my records, I realized that I had felt better during and for a few weeks after my immobilization than at any other time for over five years. That's when I decided I was going to find out, by carefully watching myself and keeping systematic records, what I had to do to feel better. Until then I had been recording my symptoms and noting when I felt worse. But in the fall of 1996 I decided to change the emphasis, vowing to identify the conditions associated with feeling better.
I began by developing my own definition of a "good" day. A good day for me is one in which I have minimal fatigue, muscle aching, or IBS--my most frequent symptoms; have no other symptoms from my repertoire of twenty-some; do not over-eat, which I'm driven to do by the drained emptiness of fatigue attacks; take a walk; and do artwork.
I also decided to focus on "good nights" as well, since sleep disorder is perhaps my most difficult problem. Lying awake for hours every night is harder to cope with than most other symptoms, it has persisted over time and it exacerbates other symptoms. Over time I discovered that if I stayed in bed, eyes closed and resting, long enough, I could usually get about seven hours of fragmented sleep. And when I got seven hours of sleep, I felt better the following day. I concluded that a good night was one in which I slept at least seven hours total; had refreshing sleep; and could lie awake resting peacefully, not agitated and frustrated. (A meditation practice and an eye pillow help tremendously. Even so, it took months to train myself to lie still while awaiting sleep.)
Good days and good nights are interdependent. After a good night, I'm more likely to have a good day. On days when I stay within my envelope, I'm more likely to have a restful rather than agitated night. Since I dread bad nights even more than bad days, this was a further incentive to discover my limits.
So then I asked, what do I have to do to have good days and good nights? After studying my journal and notes, I concluded that I must spend at least twelve hours a day in bed, resting, meditating, and sleeping; get at least seven hours of sleep; stay at home; restrict my daily activity to personal hygiene, climbing two flights of stairs in our three-story house, and walking about a mile; care for houseplants only when able to; work at the PC no more than an hour at a time; have no visits or long phone conversations; and do artwork.
This is my envelope. Staying inside it, I have the least fatigue and other symptoms and I feel as good as possible. That doesn't mean I don't exceed these limits. I do, and I pay for it.
Phase IV: Developing a feedback system
Having established criteria for good days and nights and having clarified what I need to do to achieve them, I then worked out my record-keeping system. I use a monthly planning calendar with two-inch square blocks for each day on which to indicate the good days and nights. I also note my activities and symptoms each day. Color coding with hi-liters enables me to see readily how I'm doing during the month. I find this kind of visible feedback motivating. I want to do what I have to do to show more violet (good) days and nights.
To see trends over the year, I graph my monthly percentages of good days and nights. On a calendar for the year, I put colored dots to show the days on which I experienced stress--visits, phone conversations, unusual activity, or other exertion. The correlation between clusters of dots on the calendar and the ups and downs of the percentages of good days on the graphs is very apparent. I also chart my sleep pattern daily. I needed to make this information visible to prove to myself the effects of mental and emotional exertion, as well as physical activity.
I also wanted concrete evidence of the effects of staying inside my envelope. Because limiting my life in this way is so very hard for me to do, I had to show myself that it was worth it.
Phase V: Accepting my envelope
Analysis of several years' notes showed me that mental and emotional exertion provoked symptoms as much as physical activity. In fact, I may suffer more symptoms following an hour's conversation than after walking in silence for an hour. It's not that I had never noticed the effects of being around people. It's that this is not a fact I wanted to admit.
For several years, while cutting back on physical activities, I could not accept and acknowledge my intolerance for interacting with people or the physical pain I have after mental exertion. I was not prepared to give up visits, especially with grandchildren, and phone conversations with family and friends. I didn't want to limit my work at the PC. Doing so for the past year, though, has shown me what a difference solitude, silence, and inactivity make in my well-being. Fortunately, my loved ones are supportive. Fortunately, too, and to my surprise, I have found how contented I can be in seclusion.
This is not a prescription for anyone else. It is simply what I have learned about what I need to do to feel better.
Results
So how am I doing? In 1996, a retrospective analysis showed I had 36% good days. In 1997, I aimed for over 50% good days and achieved that. My experience in 1998 has not been as good due to the stress associated with my Social Security Disability Insurance claim (which was finally granted almost three years after my initial application) and a major relocation from our home to a retirement community--a great change in living situation. Nevertheless, I have had three months this year of better than 70% good days, so I know what's possible.
My records for the past three years assure me that I am finally doing what I have to do to accommodate CFIDS. More importantly, during this period, I have had eight separate months with over 60% good days and I can account for the bad months. I know what I did or what happened that exacerbated my symptoms.
I've also learned that it is possible, by staying inside my envelope consistently for weeks at a time, not only to have no crashes, but to have exceptionally good days when I feel almost well. I've achieved more stability; I'm less victimized by the turmoil of the exacerbation-remission roller coaster.
Summary and Conclusions
In summary, I have established my own criteria for assessing my days (and nights, because nights are so problematic for me) so that I could identify good ones. I clarified what I have to do to have good days and nights. In other words, I described my envelope. I developed a record-keeping system (calendars, graphs, and charts) that help motivate me to stay inside my envelope. As a result, I am feeling much better and I am living with CFIDS much better.
As I review my story, I ask "Why could I not see for so long and accept what I had to do?" I think it's because it was so hard to make feeling good my top priority. Believing I should just soldier on no matter how I suffered, I was not able to insist on what I needed to make me feel better. I was not willing to make the changes, to give up so much that was dear to me and central to my self-image. I wanted and was determined to continue my normal life when CFIDS was insistently demanding that I live differently.
To feel good, I have to be so unlike myself: self-indulgent, irresponsible, lazy. It seems clear to me now that living "normally" is not good for me, but I also know that I can live well with CFIDS in body, mind and spirit.
Monday, September 14, 2009
Ultram and Me
My cell phone rings. I roll over and peer, one-eyed, at my alarm clock. 3:45 am. The phone rings again, playing some dopey tune I programmed specially for someone, but I can’t remember who. I lift it with the one hand not entangled in my velvety sheets.
“Ice Dad,” says the screen, all innocent. As if Ice Dad has any business calling me from Portugal at 3:45 am. Someone must have died, I think. I answer it.
“Hello?” I hear nothing. “Hello? Dad?” Background noise. Won’t Dad be pleased to hear his pocket called me, to the tune of $1.75 a minute, with that fancy European inclusive plan of his. I hang up, setting the phone back on the nightstand in easy reach, in case he really wanted to talk to me.
I roll over on my back, looking at the levered city shadows on the ceiling, listening to the sounds of pre-pre-dawn on Sackett St. Someone rummages through the recycle bins for deposit-worthy items. They roll away trailing a squeaky cart. A truck rolls loudly by. A giggle erupts from the last patron at the sports bar around the corner. Someone must have hung out in front even well after it closed. After a week of sleeping in the woods in a tent, all these things sound peculiar to my ear.
I’ll probably have to use the bathroom, now, I think. I do my usual woken-in-the-middle-of-the-night scan of my body to see what it says. I’m dizzy and I itch all over, says my body.
But I. Feel. Wonnnnderful!
What?
Oh, the Ultram. After giving up the one drug which ever made a dent in my pain due to its annoying side effects, (namely nausea, constipation and – shall me just say high -ness), I gave it another try last night. A week of sleeping on the ground, followed by 10 hours in the car and going back to work today just about ground me into dust. I needed a drug. Something good.
What, you don’t have to pee? I say to my still half-slumbering corporal self. Oh, maybe that, says my body. Maybe in a minute… I’m not desperate. But, um, hey Niki wake up! Did I mention I don’t hurt anywhere? I. Feel. Wonnnn-
Yeah, yeah, I get it. Don’t get used to it.
But it is Heaven. I imagine all the vastness of the universe twinkling inside me, in the new space opened up in my body between the sinews, within the joints, inside each cell, at the ends of bones. I took that pill 8 hours ago and I still feel this way. That may be a good thing or a bad thing..
Hey, Hey Niki look at this! My body rolls over to a seldom used position for sleeping because it puts too much pressure on my left hip. Wow, I think, very good, that’s impressive. And check this out! Another position. I feel like I could stay here for hours.
I scratch at another itch on my left forearm. I gave this drug up as a daily thing for everything but the itching. I’d always been so high I’d basically forgotten about the itching. Maybe I’m actually allergic to it. Maybe I feel so good I don’t care.
My body is busy luxuriating in yet another position, not because it had to but because it wanted to try out another one.
You know you’re high, right?
Hell, Yeah! I. Feel. Wooonnnnn-
Go back to sleep.
And I do, and it’s dreamless.
“Ice Dad,” says the screen, all innocent. As if Ice Dad has any business calling me from Portugal at 3:45 am. Someone must have died, I think. I answer it.
“Hello?” I hear nothing. “Hello? Dad?” Background noise. Won’t Dad be pleased to hear his pocket called me, to the tune of $1.75 a minute, with that fancy European inclusive plan of his. I hang up, setting the phone back on the nightstand in easy reach, in case he really wanted to talk to me.
I roll over on my back, looking at the levered city shadows on the ceiling, listening to the sounds of pre-pre-dawn on Sackett St. Someone rummages through the recycle bins for deposit-worthy items. They roll away trailing a squeaky cart. A truck rolls loudly by. A giggle erupts from the last patron at the sports bar around the corner. Someone must have hung out in front even well after it closed. After a week of sleeping in the woods in a tent, all these things sound peculiar to my ear.
I’ll probably have to use the bathroom, now, I think. I do my usual woken-in-the-middle-of-the-night scan of my body to see what it says. I’m dizzy and I itch all over, says my body.
But I. Feel. Wonnnnderful!
What?
Oh, the Ultram. After giving up the one drug which ever made a dent in my pain due to its annoying side effects, (namely nausea, constipation and – shall me just say high -ness), I gave it another try last night. A week of sleeping on the ground, followed by 10 hours in the car and going back to work today just about ground me into dust. I needed a drug. Something good.
What, you don’t have to pee? I say to my still half-slumbering corporal self. Oh, maybe that, says my body. Maybe in a minute… I’m not desperate. But, um, hey Niki wake up! Did I mention I don’t hurt anywhere? I. Feel. Wonnnn-
Yeah, yeah, I get it. Don’t get used to it.
But it is Heaven. I imagine all the vastness of the universe twinkling inside me, in the new space opened up in my body between the sinews, within the joints, inside each cell, at the ends of bones. I took that pill 8 hours ago and I still feel this way. That may be a good thing or a bad thing..
Hey, Hey Niki look at this! My body rolls over to a seldom used position for sleeping because it puts too much pressure on my left hip. Wow, I think, very good, that’s impressive. And check this out! Another position. I feel like I could stay here for hours.
I scratch at another itch on my left forearm. I gave this drug up as a daily thing for everything but the itching. I’d always been so high I’d basically forgotten about the itching. Maybe I’m actually allergic to it. Maybe I feel so good I don’t care.
My body is busy luxuriating in yet another position, not because it had to but because it wanted to try out another one.
You know you’re high, right?
Hell, Yeah! I. Feel. Wooonnnnn-
Go back to sleep.
And I do, and it’s dreamless.
Tuesday, May 26, 2009
Believe it or not, Colin won tickets to the Mountain Jam festival this weekend!
Let me share my little bit of joy...
My partner, Colin turned 40 this month. He's been really bummed about it, being not where he wants to be in his career, and seeing growth in the belly and not so much on the top of the head, etc.
Colin loves a singer named Micheal Franti. This guy is a real activist with singing - he went to Iraq and all over the Middle East with his guitar, just singing peace and love, you know.
We saw Micheal was playing at the Jazz festival in New Orleans, a city that's very special to Colin. (he grew up in Pensacola, three hours away, and kicked back many a good cocktail there.) We bought plane tickets and made hotel reservations, hoping for a nice balm to colin's small mid-life, uh, downward correction.
Then the economy totally tanked. Colin has worked a total of maybe 7 days in 2009. His work went bye-bye with Citibank. With my illness, we have about 3/4 of one job between us.
We cancelled New Orleans, ate $150 each per ticket (which cost only $220 in the first place), and sat at home and made rice noodles instead of paying for a hotel.
Knowing Micheal travels, we checked out his touring schedule and saw that he's playing -not once, but twice!- at the Mountain jam Festival in Hunter Mountain, NY this weekend. We figured a trip to someplace drivable would be cheaper. And we could camp. We made a reservation for the campsite - and paid for it.
Still, as the festival approached we looked askance at the $89 one-day tickets. Should we cancel yet another musical adventure? Where is mortgage and rent going to come from June 1?
Then Colin twisted his ankle - badly - in his first "sports photography-related" injury (he was taking pics of an old-fashioned baseball game and tripped. Go figure.) Did we really want to drive up there, camp and have him hobble all over, to the cost of over 100 bucks each?
Then one day last week we were listening to the radio in the car - we always listen as far as we can on the way upstate, because we don't get much radio at our house - WDST out of woodstock would be giving away tickets all weekend!
So we made our calling plan. Saturday we couldn't be near a radio or wi-fi. But Sunday we called several times, only to get busy signals. We mastered the repetitive dialing technique on our cell phones - which also barely work up there - to dial at least once every 10 seconds - that's one call every 5 seconds between the two of us. We just had to get through.
On Monday we realized because we were listening to the radio on line, there was a delay, but we didn't know how long. So when we felt they were about to offer tickets, we started calling.
I got ring tone instead of a dial tone! Excitement! Then I heard the contest announced - the 8th caller would get free tix! Finally some guy came on the line and said, "you're number 2, keep trying!" Was it the DJ? I jumped up and down like a maniac. "Call! call!" I demanded of Colin, who of course already was.
We both continued pressing "end" and "send" on our phones as fast as we could. We dialed and dialed. It was like junior high, all over again. Except i think neither of us really had the guts to talk to a DJ in Jr. High. We both got busy signals. I began to suspect the whole contest was a sham.
Then i heard Colin saying, in matter-of-fact tones, "why, no, I haven't won anything from WDST in the past 30 days."
Did he win? did he? Then I see him hustling, as fast as his limpy leg will carry him, out the front door and onto the very edge of the deck. He's lost his Stage Manager Voice, as I call it. "Wait! Sorry, hold on, I'm up in Fleischmanns, I have bad reception!"
Oh, noooo! Was he caller #8, only to be doomed by the fact that the Verizon tower is behind the hill and in Spring the leaves are sooo beautiful, but their blooming hinders the already wimpy signal?
But the call stayed true. And Colin did a victory hop on the deck, screaming, "I've been trying to do this for at least 20 years! I won! I won! I won!"
And thus, my friends, your energy, spun with fate and a little determination on our part, has brought our household...not a good landlord, not the perfect job, not a miracle cure to my illness...but maybe the thing in the world which would actually cheer us most. FREE tickets to the Hunter Mountain Jam at Hunter Mountain this weekend.
And good things come in threes. Then we came home, and there was a new tree planted in front of our building in Brooklyn. A Japanese something-or-other. (Colin had called 311 and requested one months ago through the "Million trees NYC" Program, like, ages ago...) Really? A tree? In front of our slum building?
And ...we brought a bike home from upstate, (a donation from my dad, who happens to be about Colin's size,) and locked it up with a good, sturdy lock and hope to get it tuned up at Bespoke Bicycles in Ft. green within the week.
Thank you all for reading in. Sunday I'll be in my tie-dye stringy dress with a happy Colin and yodeling Micheal Franti. Should keep me from getting too caught up in being poor and old.
Bless!
Niki
Let me share my little bit of joy...
My partner, Colin turned 40 this month. He's been really bummed about it, being not where he wants to be in his career, and seeing growth in the belly and not so much on the top of the head, etc.
Colin loves a singer named Micheal Franti. This guy is a real activist with singing - he went to Iraq and all over the Middle East with his guitar, just singing peace and love, you know.
We saw Micheal was playing at the Jazz festival in New Orleans, a city that's very special to Colin. (he grew up in Pensacola, three hours away, and kicked back many a good cocktail there.) We bought plane tickets and made hotel reservations, hoping for a nice balm to colin's small mid-life, uh, downward correction.
Then the economy totally tanked. Colin has worked a total of maybe 7 days in 2009. His work went bye-bye with Citibank. With my illness, we have about 3/4 of one job between us.
We cancelled New Orleans, ate $150 each per ticket (which cost only $220 in the first place), and sat at home and made rice noodles instead of paying for a hotel.
Knowing Micheal travels, we checked out his touring schedule and saw that he's playing -not once, but twice!- at the Mountain jam Festival in Hunter Mountain, NY this weekend. We figured a trip to someplace drivable would be cheaper. And we could camp. We made a reservation for the campsite - and paid for it.
Still, as the festival approached we looked askance at the $89 one-day tickets. Should we cancel yet another musical adventure? Where is mortgage and rent going to come from June 1?
Then Colin twisted his ankle - badly - in his first "sports photography-related" injury (he was taking pics of an old-fashioned baseball game and tripped. Go figure.) Did we really want to drive up there, camp and have him hobble all over, to the cost of over 100 bucks each?
Then one day last week we were listening to the radio in the car - we always listen as far as we can on the way upstate, because we don't get much radio at our house - WDST out of woodstock would be giving away tickets all weekend!
So we made our calling plan. Saturday we couldn't be near a radio or wi-fi. But Sunday we called several times, only to get busy signals. We mastered the repetitive dialing technique on our cell phones - which also barely work up there - to dial at least once every 10 seconds - that's one call every 5 seconds between the two of us. We just had to get through.
On Monday we realized because we were listening to the radio on line, there was a delay, but we didn't know how long. So when we felt they were about to offer tickets, we started calling.
I got ring tone instead of a dial tone! Excitement! Then I heard the contest announced - the 8th caller would get free tix! Finally some guy came on the line and said, "you're number 2, keep trying!" Was it the DJ? I jumped up and down like a maniac. "Call! call!" I demanded of Colin, who of course already was.
We both continued pressing "end" and "send" on our phones as fast as we could. We dialed and dialed. It was like junior high, all over again. Except i think neither of us really had the guts to talk to a DJ in Jr. High. We both got busy signals. I began to suspect the whole contest was a sham.
Then i heard Colin saying, in matter-of-fact tones, "why, no, I haven't won anything from WDST in the past 30 days."
Did he win? did he? Then I see him hustling, as fast as his limpy leg will carry him, out the front door and onto the very edge of the deck. He's lost his Stage Manager Voice, as I call it. "Wait! Sorry, hold on, I'm up in Fleischmanns, I have bad reception!"
Oh, noooo! Was he caller #8, only to be doomed by the fact that the Verizon tower is behind the hill and in Spring the leaves are sooo beautiful, but their blooming hinders the already wimpy signal?
But the call stayed true. And Colin did a victory hop on the deck, screaming, "I've been trying to do this for at least 20 years! I won! I won! I won!"
And thus, my friends, your energy, spun with fate and a little determination on our part, has brought our household...not a good landlord, not the perfect job, not a miracle cure to my illness...but maybe the thing in the world which would actually cheer us most. FREE tickets to the Hunter Mountain Jam at Hunter Mountain this weekend.
And good things come in threes. Then we came home, and there was a new tree planted in front of our building in Brooklyn. A Japanese something-or-other. (Colin had called 311 and requested one months ago through the "Million trees NYC" Program, like, ages ago...) Really? A tree? In front of our slum building?
And ...we brought a bike home from upstate, (a donation from my dad, who happens to be about Colin's size,) and locked it up with a good, sturdy lock and hope to get it tuned up at Bespoke Bicycles in Ft. green within the week.
Thank you all for reading in. Sunday I'll be in my tie-dye stringy dress with a happy Colin and yodeling Micheal Franti. Should keep me from getting too caught up in being poor and old.
Bless!
Niki
Monday, October 6, 2008
Aspen or Bust
I'm still tinkering with it, but here's what I've been doing instead of updating my blog - a little picture diary of our trip to Colorado. A bit o' mountain scenery to roll us into fall:
http://web.me.com/nikifun
Peace,
Niki
http://web.me.com/nikifun
Peace,
Niki
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