May 122014
 

 

…I hope you are not saying that CFS patients are not as ill as HIV patients. My HIV patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have HIV.  — Immunologist Nancy Klimas to the New York Times (emphasis added)

Imagine yourself with the Flu. You’re a day past the “sleep 20 hours in a fog” stage, but you’re still pretty sick. You can get up for a few hours at a time, make yourself a sandwich or take a shower, maybe drive to the coffee shop for a latte. But you never really forget that you’re sick — with everything you do, your head throbs, your body aches, your brain feels fuzzy, and you can feel your bed calling you back to horizontal. One minute you’re too warm, the next you’re too cold. Noises seem too loud, smells too strong, light too bright. You might read, watch some TV, take care of your child or talk to your spouse, but all the while your body and your brain put out a distracting thrum of competing messages: “I’m siiiiiick. I don’t feeeeeel wellllll. Go lie dowwwwwwn.” After a few hours, it’s time to give in and take another nap. Exhausted as you are, sometimes you feel too rotten to sleep.

Most of us have been there. If possible, we just drop out for a day or two and rest till it’s over. But now take those few days of Flu and stretch them out over 9 years. What balls would you drop? What would happen to your job, your family and friends, your hobbies — your life?

To quantify it, imagine that research found most people with Flu lost between 50% and 85% of their normal functioning. Imagine the 10 things most central to your life — say Job, Family, Friends, Faith, Hobbies, Cooking Meals, Cleaning House, Self-Care, Fitness, and Travel. Picture writing each one on a notecard, then putting those cards face down, shuffling them, and taking 5 or 8 of them away. What’s left? What would the your life look like without the things you took so firmly for granted? What if you rarely left the house? What would those changes do to your self-image and self-esteem?

Now imagine that there wasn’t much your doctors could do. In fact, what if many doctors didn’t “believe” in the Flu, or thought that, deep down, Flu was just a bodily expression of some psychological damage. What if most of the other people in your life felt the same? What if they told you things like “I would understand if it was Lupus or something, but come on, the Flu? You really need to snap out of this Flu thing.” What if, despite a million severely affected Flu sufferers in this country, the disease received fewer research funds each year than Male Pattern Baldness? Imagine so many public misperceptions about Flu that even government health authorities repeated discredited data on their websites. Imagine the lack of a Flu test meant it was almost impossible to get disability payments for Flu — even for the 25% or more of Flu sufferers who were too sick to ever leave their house.

Imagine that one of the top 3 causes of death for Flu was suicide. Imagine that every other patient in the Flu community understood the hopelessness that could lead someone to that dark point.

The Flu analogy is the best way I can think of to describe my past 9 years with Chronic Fatigue. I know it’s impossible to convey the reality of chronic disabling illness to someone who’s never been there, but today is International Chronic Fatigue Syndrome Awareness Day and I wanted to give it a try. Some people with CFS are well enough to work and others spend years at a time confined to their beds, but for me, the best comparison these days is that “a few hours at a time between rests” stage of Flu. My biggest issue is fatigue and the way my brain never seems to work the way it should. There’s pain, but I would gladly take on even more pain if it meant getting my mind back. I struggle with the most basic activities of daily life — the other day I crashed and had to rest because a bath was too exhausting – but I’m lucky to have heroic levels of support from my husband and my mother. I also have finally found a primary care doctor and a specialist who believe in me and are willing to keep trying treatments for as long as it takes. Even when the chances of actually getting better seem low, it’s huge at least to have doctors on your side. Not everyone with CFS has that luxury. Still, it’s hard to keep hope alive when everything goes downhill year after year. I feel useless sitting around the house all day. I try to practice mindfulness and live in the present moment, but on bad days I struggle with feelings that a life spent sitting around is a wasted life. I parent as best I can, try to maintain relationships, clean far too rarely, and read and write when I can. But mostly I watch the years tick by unused.

In coming weeks, I’ll follow up with a few of the medical and social basics of Chronic Fatigue Syndrome. Please read on, for your friends and extended family and coworkers and neighbors who are out there on their couches and in their beds, suffering in silence. Chronic Fatigue Syndrome is more than just the “yuppie flu.” It’s not in our heads. And it’s slowly killing a million people while society looks the other way.

Dec 012012
 

It is December, and WEverb is upon us for another year!

If you haven’t heard of WEverb, it’s an effort to reflect upon the past year and prepare for the new through daily creative prompts. Answers can be shared on blogs, through Instagram photos, or just privately in your own journals. You can find all of this year’s prompts right here.

I probably won’t participate every day this year, and mostly because the year was such a bummer. There are only so many ways you can say “I was really sick, but at least my family makes me happy.”

But today’s prompt is to summarize the year in haiku, and I can’t resist a good haiku prompt. (If only because I personally started the haiku-prompt tradition.) Haiku is like the Instagram of poetry — easy to fake artistic depth.

Without further ado, the Chronic Fatigue Syndrome lament:

Time marches. Life waits. 
No answers. Doctors can’t fix 
What they don’t believe.

Are you participating in WEverb this year? (It’s never too late to join!)

Nov 202012
 

I’ve been disabled by illness for the last 8 years. One fifth of my life. Life slips away, day by day, as I struggle to get through basic tasks. Sure, I’ve managed a few endeavors like marriage and child, but I don’t feel especially successful at either one. Balls are dropped, to-do lists go untouched, and I care for my child with yet one more round of videos while we snuggle on the couch. Meanwhile, on Facebook and Instagram I watch the normal world pass by — the careers, the social lives, the gym trips, the fresh-cooked meals, the clean homes and hobbies and seasonal festivities.

Despite the frustrations, I struggle surprisingly little with the psychology of it all. I just assume that someday I’ll start feeling better and pick up my life again. This is temporary, a phase to be endured as best we can. I believe in the power — and the possibility — of reinvention at any age. Someday I will come out the other side, survey the landscape, and forge ahead on a new path.

The major (and majorly superficial) sticking point in all this optimism? Appearance. Between the effects of illness, the stay-at-home mom frumps, and the inevitable march of time, the past few years have been rough on my looks. I watch the gray hairs arrive, one by one, the wrinkles form beachheads around my eyes, the skin of my face start to sag. I realize that I went into this young and will come out of it old. Or “old” as we define it in America, anyway — plenty of years of living left, but what’s the point if you can’t enjoy them with dewy radiance and a 20-something physique?

I know it’s silly for a 40-year-old to be whining about being OMG, so old. Hopefully I’m not even to the halfway point of life. I’d be embarrassed to say any of this to my grandfather, who turns 90 this week. But as much as I’m prepared to reinvent myself whenever life moves on, I’m not reconciled to the idea of doing it as one of our society’s invisible people — an older woman.

My main comfort in facing the decades ahead is the memory of my grandmother. For her funeral last winter, my cousins put together a touching slideshow. There were a few scanned images from her early years — the glamorous WWII-era wedding photos with Grandpa, some shots with grown children in the 60s and 70s — but the great majority of photos were from the last few decades when cameras were everywhere and prints not yet lost to the years. Most of the shots were from Grandma’s retirement years, her 60s and beyond. And you know what? They showed a full life. Family and travels and love and just being together enjoying the company of the people you care about — that’s what survives when the career and the good health and the youthful splendor are gone. And that’s a good thing, because the togetherness and love are what matter in life anyway. It’s just so easy to forget that in a society that tells us you’re nothing unless you look cool and dress cool and have a cool job and a cool house.

As usual, I’ve got a lot of random thoughts and no nice conclusion to tie them all together. Will have to put that on my wish list for my reinvented future — writer who can write conclusions. But anyway, what about you? Any wise thoughts on aging and/or appearance?

Oct 022012
 

When Vera was around 9 months old, she had a couple of nighttime tantrums that almost broke me. Vera was sleeping peacefully, an hour or so after bedtime, when suddenly she started to cry and kick and scream. She wouldn’t take a bottle, fought my hugs, and kept throwing herself to the floor. Nothing I tried would soothe her. The screaming and fighting went on for 30 agonizing minutes, 40, 45, until Vera finally settled back into an exhausted sleep and Mama dissolved into tears.

The first time was just weird. After the second, I did what I always do with strange symptoms — turned to Dr. Google. Results suggested she might be experiencing night terrors, but most articles reported that night terrors don’t start before the preschool years. One even insisted they only happen to teenagers.

Three years and a few hundred bouts of night terrors later, let me assure you that night terrors can strike babies and toddlers! Here’s our hard-won knowledge for anyone else out there facing something similar:

What are night terrors? A night terror is a bit like sleepwalking — a person may walk, talk, and open her eyes but is actually sound asleep. In fact, it can be difficult to awaken someone in the middle of a night terror. The “terror” part is because people with night terrors enter fight or flight mode, screaming and crying, fighting imagined threats, and sometimes running away. Most people don’t remember anything about the night terror once it has passed.

That may sound simple, but the actual experience can be horrifying. Vera either cries loudly in her sleep or yells “NOOOOOOOOO.” Sometimes “STOP” or “I DON’T WANT IT,” but usually just “NOOOOOOO.” Sometimes she slides to the floor. Often she just cries and thrashes. If we pick her up for hugs, she arches away or physically fights us. She kicks a lot, and sometimes she nails us hard. As a parent, it’s indescribably difficult to see your little one in trauma but get kicked away when you try to soothe her.

Terminology confusion: Some argue that “sleep terrors” is a better term than “night terrors” because they happen at nap time too. Sleep doctors use “confusional arousal” for Vera-style episodes. I find that term much too mild — her episodes are definitely more “terror” than “confusion.” But true medical “night terrors,” which do strike mostly teenagers, are on a whole other level. Teens suffering true night terrors frequently injure themselves or others during fight-or-flight.

What causes night terrors? No one knows exactly. They’re described as a “neural storm” that happens when a person gets stuck between normal sleep and wake cycles and one part of the brain signals sleep while another signals wake. Night terrors usually happen in the first several hours of sleep, during Stage 4 (deep, non-dreaming) sleep. They are most likely to happen when a child is overtired or sick. Sudden loud noises or other disturbances during the wrong part of sleep (I’m looking at you, yappy dog) can jolt Vera into a night terror. A full bladder or wet diaper are other common triggers. The episodes can hit several times a night for several nights in a row, then disappear completely for weeks or months.

Nightmare or night terror? Nightmares happen during REM sleep and are most frequent in the morning toward the end of a night’s sleep. Kids often wake up afraid, and older kids sometimes remember and describe their dreams. Night terrors happen during deep, non-dream sleep and are most common in the first few hours of a night’s sleep. The child will usually go right back to sleep after a night terror and won’t remember it in the morning.

How to handle an episode? Articles will tell you everything from “talk to him reassuringly and hold him close till it passes” to “don’t talk to him or touch him under any circumstances.” The best advice is usually to watch and be sure your child is safe but otherwise to let the episode run its course without interfering. That is easier said than done, though — most parents are compelled to try and comfort a child who’s so obviously upset. When Vera was younger, we could sometimes pick her up and hug her out of it. With small grumbles, I can usually “shhhh” her and quietly reassure her that we’re there. Now that she’s older, we try a series of questions: “Do you want a blankie? Do you want a teddy? Drink of water? How about hugs?” The first several offers are usually met with “NOOOOOO,” but sometimes we break through to a sad little “yes.” If those tricks don’t work, we just have to walk away. It always stops eventually. In fact, her terrors rarely lasts more than 5 minutes. But those 5 minutes can be very long for a concerned parent with a tragic child.

Are there treatments? Nothing much. Sedative and sleep drugs may work in severe cases. Luckily, most kids outgrow the problem.

Other trivia: The worse place Vera has had night terrors? Small bed and breakfast wasn’t fun (the rooms down the hall woke to middle-of-the-night bloodcurdling screams), but the absolute worst was on an airplane. Twice. Loud, extended screaming and fighting mom and dad, all while scores of judge-y strangers watch? Check and check. (And I’m not the only one — this blogger’s child had a 45 minute episode on a flight.)

Scholars suspect night terrors are the real-life explanation behind some stories of demonic possession.

My biggest worry? That Vera is seeing the things described by night terrors sufferers at this site. Hoping it’s purely a neurological thing and not terrifying visions. Our poor baby!

Do you know anyone who suffers night terrors? Any wisdom to share?

Sep 252012
 

Vera watering the garden at school.

Vera has been in school for almost a month now. Big transitions like this are always strange — one day your life looks a certain way, and the next day life is entirely different. Vera has been with family at all times for over three years, and suddenly she’s out there living a separate and independent life each day.

Obviously, this has been a transition for all of us. Vera is learning to rely on her own resources without the safety net of family to back her up. I am learning to live with the lack of information, to piece together her activities from the cryptic sentence or two she shares at the end of the day. Luckily, we hit the jackpot with both school and teacher, so it feels reasonably safe sending her out into the great unknown each day.

Starting school is a big deal for any family, but it’s really really big for a stay-at-home mom. You go from having no time at all (at least with my kid; she was never one to entertain herself) to enjoying six hours a day to yourself. I thought this would be revolutionary. This was going to be my chance to whip our sad house into shape, change my health habits, start writing and blogging again, finally tackle my book….

Turns out, not so much. I thought childcare was the main thing holding me back, but in fact my health holds me back even more. I’ve had a small health crash lately, so most of my day is spent resting up to prepare for the hours between school pickup and Vera’s bedtime. I can’t sleep but am too tired to function normally. I’m basically useless. Half the time, I can’t summon the energy to even read. I lie in bed, poke my phone off and on, play ridiculous amounts of mindless games. Hours and hours to the day, and I can’t use any of them. It has been incredibly frustrating and a little depressing.

I pushed myself to exhaustion and beyond for 3 1/2 years, trying to keep going as wife and parent despite my illness. In the grand scheme of things, I know that one month isn’t enough time to recover. I’m trying to go easy on myself. But it’s still frustrating, at the end of the day, to look back and feel I have nothing to show for my existence.

No real point or conclusion to this post. Just wanted to give a little update on the state of things around here. Expect some useful household and baby tips and more travel updates in coming days.

Nov 012011
 

[While] we had a lot of feelings and observations and memories and dreams and (God knows) opinions we wanted to share, we all ended up just the tiniest bit resentful when we found the one fly in the ointment: that at some point we actually had to sit down and write. — Anne Lamott, Bird by Bird

Hello, my darlings. It’s been five months. And now I’m back.

Here’s how things work around here: Between my daily battle with fatigue and pain and my daily battle with a headstrong two-year-old, there’s little time and energy to live a life of my own. Things rarely get done without a deadline or other extremely pressing motivation. Like everything else that counts as optional, the blog falls by the wayside. Then I worry about the constant nagging stress of the unwritten post, and I wonder repeatedly whether it’s time to just quit.

But the combination of illness and baby has also reduced my real-world life to nearly nothing. Where I used to have a profession, and better yet one I was good at, now I just sit at home and try to fill the hours till Vera’s bedtime. Whenever I stop blogging, I feel like I’ve lost my voice in the world. Disappeared.

And so it goes: Slack off. Pick up. Quit altogether. Restart. Back and forth, ad nauseum.

Right now, at least, we’re forth. November is NaBloPoMo, the month wherein many bloggers make a commitment to posting every day. I still haven’t figured out the ultimate destiny for Two Wishes, but it seems an ideal time to burn through some of the 100+ compelling (to me, anyway!) topics in my “things to blog about” list. Hope you’ll stick around!

For that matter, between breaking my feed last fall and then my very long absence, I’m not even sure anyone is out there anymore…. If you’re there, please do leave a note in the comments and say hi.

Jun 022011
 

Despair, Inc - Mediocrity

(image from the glorious Despair, Inc.)

I grew up a perfectionist. And then, in my 20s, I got very, very sick.

If there’s one thing a person learns from serious or extended illness, it’s that sometimes you have to let perfection slide and go with whatever works. Illness reduces available time, energy, money, and just about anything else you can name. Once, I could create perfection by ignoring my natural limits and overextending till my goal was reached. Now, that’s really not an option. The only choice is to live within my new limits. Can’t clean your house often? Learn to live with dirt. Can’t post on the blog as much as you want? Learn to live with a light posting schedule. Have to cancel a big event that you’re not feeling up to? If you can’t force yourself, what can you do?

In the decade since my original illness, I’ve seen many other perfectionistic, Type-A women fall prey to disease. It happens so often that I’ve developed a theory: illness happens to Type As to force them to slow down and stop sweating the details. Maybe it happens because stressful lifestyles leave women prone to physical exhaustion that becomes illness. Or maybe it happens in a more touchy-feely, “life sending you a lesson you need to learn” sense. But one way or another, illness is often the teacher that sets perfectionists on the path toward a healthier approach.

As a newly minted “good enough”ist, my biggest comfort is the 80/20 Rule. According to this theory, 80% of the benefit in most fields comes from only 20% of the work you put in. After that, you receive smaller and smaller rewards as you put more and more effort into perfecting the details. Of course, 80% is only a “B.” There was a time in my life when Bs were not okay. But if you’re dealing with very limited resources, the 80/20 rule is pretty darn comforting. Who needs to waste so much more time on that last little margin? It’s not my own limitations, it’s economic efficiency!

Why bring this up now? My next couple of posts will be about a book called Good Enough is the New Perfect. The authors say that the title is a bit of a touchstone for dividing the perfectionists from the, uh, recovering perfectionists. Real perfectionists recoil at the idea of “good enough,” saying it’s the same as settling for mediocrity. But for me? These days, it’s basically my credo.

How do you feel about perfectionism versus “good enough”ism?