Tag Archives: fibromyalgia

Week 47: Let the fibro in

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They call it the “Fibro Fog.” It manifests in different levels of intensity for each person with fibromyalgia, but there’s a common denominator–when the fog hits, you become forgetful and disorganized, among other things. And for someone who was already disorganized to begin with, the fog makes me resemble a headless chicken, especially when I have children to feed and deadlines to meet.

I make jokes about it now. But late at night, the questions nudge through the wall of courage I put up every day and some of them manage to poke through. How do I raise my kids to be happy, self-confident human beings when I sometimes can’t help but ping pong between Mary Poppins and Godzilla? What happens when I become so out of it that I can’t even work anymore? What happens when I’m a grandma and the fog triggers dementia or Alzheimer’s disease? (I don’t even know if that can happen, but darkness has a way of letting in all kinds of fears, especially the irrational ones.)

To silence these impostors in my head, I work with my hands. I’ve discovered that making things with my hands is therapeutic for me. Right now, typing this helps me deal with the fog. It clears my head (as clear as it can get, at least), distracts me from aching limbs, drives away depression. My hands provide a portal to a world where I know what the next step is. When I restore a piece of forgotten furniture, or turn an old thingamajig into something useful again, I break away from the fog clawing at me. It is my natural medication: turning a broken, dusty bed into a bookshelf; filling a blank screen with words and stringing them into sentences and paragraphs that make sense; sitting at the piano and making some sort of music.

But sometimes, I get too bogged down, too fenced in by this fog that I can’t do anything to fight it. My kids don’t start school until two weeks from now, so yesterday, they couldn’t believe at first that I was letting them spend practically the whole day in front of screens. They bounced from tablets to the TV to computers, totally oblivious to the fact that I had no choice but to let them. And while they basked in digital euphoria, I just sat. It was time for the random. It was time to stop pushing against the onslaught and just let it come. (It was time to be a pathetic, melodramatic whiner.)

I would like to be able to say that because of that “grand” gesture of acceptance yesterday, the fog dissipated. Of course it didn’t. But it taught me to open my eyes and my mind some more. There are some days that fighting the good fight is the thing to do in order to survive. On those days, you do whatever you can to stay afloat. And there are other days when you have to recognize that you need to just sit back, rest, and trust that the world will continue to turn, and that you can get back on it when you’re ready.

Week 44: Meditate

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In late January, my sister-in-law L sent me a link to Faith Hunter’s 30-day Meditation Challenge on DoYouYoga.com. Until then, I had no idea who Faith Hunter was (turns out she’s a famous yoga teacher). Also, I thought my capacity for meditation was two seconds. Still, I went ahead and signed up because I felt like taking life by the horns that day.

The challenge began on the first day of February. For each day of February and a couple days of March, I receive via email a video featuring Faith Hunter walking me through 10 minutes of meditation. In some, she asks me to stretch my arms way up while working on my breathing; in other videos, she makes me cross my hands over my heart, close my eyes, and tell myself all things positive. Every video is focused on a specific goal: to teach me how to think positively, to be courageous, to know my worth, etc.

I could have begun this challenge with a better mindset. For starters, I crammed three videos in one day. I wasn’t able to begin on the first day of February, only got around to it on the third day because of all the noisy things in my life. Faith Hunter must have known this would happen. The day-2 video was on breathing meditation for stress relief; day 3 was on calming the mind. Yes, she definitely knew people would be procrastinating and cramming her videos.

For the first few days, I just went through the motions. It was me following meditation instructions from a video. But then, I was so surprised to realize later on that meditating was making me calmer and more present in the moment. Sure, I was still disorganized and tended to get into strange situations–for instance, today, I hurriedly dressed in the dark to begin my day only to discover hours later, in broad daylight, that I’d put on a thin white dress over a bright pink bra with black polka dots. I spent the morning looking like Julia Roberts before she became Pretty Woman. But anyway, I digress.

Meditation has been helping me, and I’m so bowled over by this discovery. I used to dismiss meditating as a hack job to brainwash people. But the breathing exercises have taught me how to breathe properly so even if sometimes I have a hard time catching my breath, I can talk myself through it and eventually find my rhythm again. And the brainwashing part? I’ve found it’s not really so bad if it brainwashes me to be braver, to be more positive, to be more chill.

Throughout every day, I often need to go off by myself even if just for a few minutes, just to be silent and still. But a couple of weeks after I began meditating, I realized that those periods when I was alone were still full of noise. Sure, I was quiet, but I had my phone in my hand and would lurk in Facebook. Or I would reread Stephen King and fill my mind with so many words and terror. Or I would eat chips to escape being referee in a fight downstairs about who gets to use the newer badminton racket.

Meditating makes everything outside and inside me quiet. I’m learning how to exhale stress, frustration, and anger. I’m learning to be right here, right now. And somehow, I’m learning to deal with the fibro pain like Batman deals with his fear: embrace it. Meditation. What a gift.

Week 42: Wait for the sun

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The uncool thing about this fibromyalgia is that, for me, at least, the depression it brings hits without warning sometimes. It creeps up on feet in socks, expertly, so that it doesn’t rustle even a hair on my head. Then it envelopes me, engulfs me until there’s nothing left for me to do but let it.

It’s difficult for people without fibromyalgia to understand this, coupled with all its other symptoms. Even I sometimes can’t get it. How can there be pain when I don’t even smoke, or join triathlons? How can I be depressed when there are two kids in the next room, talking to each other with minion voices? How can I be so out of breath when all I’m doing is sitting and reading a book about Snoopy?

Until some years ago, doctors thought fibromyalgia was a figment of a hypochondriac imagination. I remember about 15 years ago, I went from doctor to doctor to doctor and after 57 trillion tests, not one could tell me why I was so tired all the time. Someone suggested I take more calcium; his patronizing associate told me to eat more fruits and vegetables because they’re easier to process; another one said I should exercise more; but the wisest of them all said it was all in my head. He said I was just imagining the pain and the breathlessness.

Turns out, I wasn’t. Fibromyalgia is a chronic disorder that affects the nerves, causes a glitch in pain signals to the brain, lowers oxygen levels in red blood cells, causes over-all fatigue, depression, and a host of other symptoms. Intensity may vary from person to person but the bottom line is, everyone with fibromyalgia has to learn to live with it because medication mostly deals with only the symptoms.

I prefer to not use meds because I don’t like the side effects. And I’m grateful that my symptoms are not too intense that I have to rely on daily medication to function properly. Dropping the drugs has taught me to listen to my body more carefully. There’s always a sign when the pain is about to come: a twinge in the back, a hand that starts feeling heavy, a leg that becomes lazy. Then you brace yourself for the onslaught and try to distract yourself until the pain runs its course which, sometimes, takes days.

What always catches me off-guard, though, is the depression. It steals in at any time of the day, at any occasion. And it removes all logic. You tell yourself that there’s really no reason to feel down, but all words (even those said with the best of intentions) just bounce off a white wall; heard but unacknowledged. The grayness paints you into a corner and you’re too confused, too lost to crawl away even after the paint has chipped off.

And the thing to do, when that happens, is to wait for the sun to come out, because it always does. This is me waiting.